WELCOME!
Intro: Our little super-hero, Brock Jacob Morrow, born November 26, 2013, was diagnosed with late onset (not delivery related) Bacterial Meningitis at 12 days old. Brock is fighting high bacteria counts, low glucose counts, and has sustained considerable brain damage that makes the future appear very bleak. We beg your prayers and petitions on his behalf.
Medication Wean
Brad Morrow , 10:17 pm, 3/27/2014
As of about 5 minutes ago, we have officially begun to wean Brock off of one of his anti-seizure medications. This is a huge step, and for sure wasn't something his doctors suggested or just happened to agree to. Please be praying for us- as it means no date nights due to the increased risk of seizures, more stress, etc. and for Brock and his body as it adjusts. Phenobarbital, the medication we are weaning off of, has terrible side effects for Brock's development and is also a narcotic so weaning has to be done very carefully and slowly.
Thanks for being Brock's prayer warriors!
Another two week update...
Taryn Morrow , 9:58 pm, 3/25/2014
It’s been one of those weeks! Sunday evening, Brock was perfect. Went to bed normal, but we heard him moving around a lot more during the night. He wasn’t crying, but just seemed to not be able to really get comfortable. We left the house around 7:40 Monday morning for a feeding appointment- and he wasn’t really interested in eating during the appointment even though it had been several hours. It makes it difficult to evaluate a skill when you flat out refuse to demonstrate it…and Brock really, really struggled when he was eating (difficulty pacing, eyes red, coughing, etc.). So, they want to see him more often for the next few weeks to hopefully get some of that figured out.
But it was downhill from the appointment in all areas- he wasn’t wanting to eat, was incredibly irritable, and around 5 (of course, as soon as the doctor’s office closed) Brock began screaming and was inconsolable. He would cry until he would cause himself to cough, which would result in him throwing up, and then falling asleep for 10-15 minutes before starting the cycle all over again. It didn’t take long for Brad and me to decide it was definitely worth taking him in to get checked out. We went ahead and drove straight to Children’s- and stood in line with the other hundreds of people. Seriously - I don’t know if it was just because of the ice storm the first time we took him in or what, but this was the first time I’ve ever had to really “wait”. As a parent with a child who was sick and obviously in pain, this was so incredibly difficult to just sit and wait for your name to be called while hearing conversations of people who had already been waiting one hour plus! Brock was taken back for vitals, and we were almost immediately put into a room.
Several hours later, (and one very sleepy mom), doctors all came to the same conclusion that it was most likely a virus of some sort, but wanted to keep him for observation to ensure it wasn’t a virus plus something more serious- specifically pressure in the brain. He did have a CT scan, and the third and fourth ventricles in his brain are larger- but comparing a CT scan with an MRI gets complicated, so we will have another MRI at the end of the month before our neurosurgery follow up next month.
The pediatrician that we had in the hospital (once we were actually admitted) is good friends with our neurologist and gave him a page, so we were able to visit with him in person while we were there. He had some very good news for us. Brock’s EEG from two weeks ago came back….COMPLETELY NORMAL!! While this doesn’t mean that Brock hasn’t or won’t have seizures, it is a likely indicator that he isn’t having them on a regular basis. When we first began seizure medications, he was having about 20 seizures PER HOUR, so the fact that he had zero over an hour and while having both awake time, and sleep time, is a very good thing. Even better, the neurologist is going to let us take him off of phenobarbital! This is our least favorite medication because one of the biggest side effects is extreme drowsiness which typically accompanies severe developmental delays. In all the craziness of another hospital stay, this was very welcomed news.
After about 15 hours on fluids, Brock was back to his more normal smiling self, and we were allowed to go home after about 40 hours. He has been batting at his head a lot and still been fussier than usual, so we are hoping he is still getting over whatever he had- but we have been led to believe that a shunt is in the very near future for our little guy. While this should be a very “routine” brain surgery- if that is even a real thing, it does involve signing those scary consent papers, and the shunt doesn’t exactly have a great track record for avoiding failure the first year. With summer coming up, that’s a very scary thing for me. I’m worried about being home alone this summer while Brad is at camp. I stress about the idea of needing to take Brock in and not having him there also. I worry about Brock needing a shunt while Brad is gone at camp where cell service is practically non-existent.
We’ve learned time and time again that we have so many people that we can call on- and we would not survive without that network. The network of people who stop their lives to help us by bringing us meals, helping us do yard work, watching/playing with our kids, sending an encouraging card or text message. They help remind me that there is such a larger picture than the medicine bottles and syringes and EOB’s that seem to overtake my life.
Other exciting news for our family includes the purchase of another vehicle that will fit car seats. Both times we have landed in the hospital, transportation has been an issue since only one of our cars can fit any car seats. Now, Brad and I both can take 1, 2, or all 3 of the kids somewhere…and it’s such a blessing! Brad can take the girls to school, and I can be first at the doctor’s office. Win, win.
We've got an MRI coming up, a visit with neurology towards the end of April, and the dreaded revisit with neurosurgery. Please be praying for that situation. I have a good feeling the shunt is in our very near future and if that is what he needs, so be it. He bats at his head constantly and his scalp is full of scabs. I fear that he is in pain every time he cries and I cannot console him. At the same time, signing consent papers for brain surgery is not high on my to do list, and neither is another hospital stay, or meeting our medical deductible with one scan for the rest of his life...more than anything, if this is the route he needs- than I need peace. I need to be able to sleep at the end of the day and be thankful for that day instead of worrying about what tomorrow will bring.
Until next time,
Taryn
Family Photos
Taryn Morrow , Mar 13th at 11:24 pm
Van Reet Photography donated a photo session for our family, and she was able to capture some excellent images of our little family. If you are in the DFW area, or plan on visiting, hook up with her! (see the pictures and you will know why!) Also, I have five coupons for discounted services from her, so get in touch with us and I will get you the coupon! If five of you book sessions, it'll get us another free photo session...eeek!! To see more pictures, go to http://vanreetphoto.com/morrow-family-grapevine-family-photographer.
Step by Step
Taryn Morrow , Mar 13th at 10:56 pm
I apologize that updates are few and far between. We have been in such a time of transition and new things- therapies, spring cleaning, busy schedules and at the end of the day, it’s all Brad and I can to just fill each other in, if that. We so appreciate the fact that so many of you still come to the site on a regular basis to check on our sweet little boy- who is growing up so very quickly before our eyes.
We made our first trip as a family- back to Baytown (where we lived before Grapevine) to visit with one of the teens in our youth group who was just diagnosed with lymphoma. It was the most stressful trip I have ever taken in my life- filled with fears that didn’t happen, and fears that did. We survived though, and with some of those fears conquered, I am eager to do it again. We traveled through horrible weather, almost had to sleep in our car because all hotels were booked, ran out of one of his medications, had an allergic reaction to the suspension the new pharmacy used, but we survived. We were able to find a compounding pharmacy and get his meds in three hours, and were put in touch with an incredibly sweet couple who opened their home for us in Corsicana when no hotel had a room. For anyone who has ever been in a situation like ours, it is easy to let fear control where you go and what you do. We don’t want to live our life that way, but I can’t just jump off yet either. Baby steps have become a crucial part of our life.
Brock was an awesome travel buddy, but a big part of that most likely has to do with the fact that the seizure medications he is on make him very sleepy. We really feel that Brock is on way more medication than his body needs, so we have been in contact with his neurologist. While this is very “non-textbook”, they have agreed to consider weaning Brock off medication- one at a time. The first step in the process is getting an EEG. Brock had that done on Tuesday. These particular test-days are terrible for our family as they are very high stress and rule-oriented. The rules of this particular test included needing to be sleep deprived, alone, and hungry for the appointment- which caused tears for everyone. Brock was able to give them exactly what they needed though- sleep time, awake time, and he even looked right at the lamp for the strobe light portion of the test. We will hopefully hear back from neurology by the end of this week- but if not, early next week. It is our prayer that it reveals he did not have any clinical or subclinical seizures and we can begin weaning him off of one of the three seizure medications he is on.
He really is doing so well- he smiles, coos, and can now roll over from back to tummy and tummy to back! He loves music, and is fascinated by his hands. He hates the swing and tummy time. We are eager for the sun to stay so we can get out and about and enjoy the outdoors as a family. I have no doubt that this summer will be incredibly difficult as the kids and I stay home and daddy goes to camp alone…but I pray and beg that this is only a season for us. Please continue to lift up Brock’s health to the Father in prayer- we would be ever so grateful.
I am so worn out physically, mentally, emotionally, and spiritually. I run on empty. So, this weekend, Brad and I are leaving everyone for a night to ourselves- Thank God for Grandparents. There is still so much anxiety involved with leaving Brock, even when he is doing so well. There are instructions to write, meds to prepare, and forget even attempting to clean the house. Please pray that this time away can be refreshing for us as a couple and individually.
Baby steps forward equal bigger steps over time.
Until next time,
Taryn
Video Updates
Brad Morrow , Feb 23rd at 4:36 pm
Here are two videos from this past week to help you see why we are doing some major celebrating!!
http://youtu.be/JebKwQAdWKc (Brock Rolling Over)
http://youtu.be/cdxQa4n6bYM (Brock Talking)
A Super Update for Super Brock
Brad Morrow , Feb 22nd at 2:11 pm
Super Brock is doing fantastically! The last couple of weeks it has become more apparent that the medication levels in his bloodstream have lessened and he is awake more often. He smiles. He coos. He absolutely melts my heart in a way that I cannot ever describe. Being told in the hospital never to expect these things have made them so much more meaningful to me. I don’t take them for granted. While these things don’t mean he is necessarily healed and won’t have challenges ahead, I will celebrate them now for exactly what they are to me. A miracle. God continues to work in big ways through all of this- in the things Brock has done since leaving the hospital, in the people that we have met, through the prayers of you all. For that, I am so thankful.
We were finally able to get therapy evaluations completed- so Brock now has a speech, OT, and PT therapist following him- along with his neurologist, neurosurgeon, and urologist. Add pediatrician visits, chiropractic care, lymphatic massage therapy, and anything else we can get our hands on…and it makes quite a juggling act that we are slowly getting better at balancing. The problem is when one ball drops, they all come crashing down and it takes several days to get it all back where it should be.
We have had our first accidental skip of meds…which was not followed by a seizure, thank goodness! It is still incredibly nerve racking to think of getting out of our routine, but hopefully that will come soon too! The weather has been wonderful, and we all have enjoyed spending lots of time outside in our backyard. Cold and flu season will be over soon and we are looking forward to getting out and about much more often!
We've Been Busy!
Brad Morrow , Feb 17th at 10:40 pm
Super Brock has been busy! We will update soon with a thorough post, but for now...pictures!!
Brad Morrow , Jan 30th at 11:02 am
So many of you have mentioned wanting to view the video of Brock and not being friends with us on facebook, etc. so Brad's dad was able to help us make a link to post it on here! Click on the 'Click here' to watch Brock cooing and smiling!
Brock had his 2 month check-up this week and the doctor said all of his reflexes are exactly where they should be! Praise God!
Brad Morrow , Jan 28th at 3:22 pm
(click on the picture to see the entire thing)
Taryn Morrow , 12:07 am, 1/28/2014
Wow. I know they say time flies when you are having fun; but I am here to argue time flies when you are incredibly busy! It’s hard to believe that we have already been home for three weeks. The hospital feels like yesterday and like forever ago at the same time. Three weeks and we still have a lot to figure out; schedules and routines are still to be made.
We had two visits back to Children’s this past week, one for Brock’s repeat hearing test, and the other for a consult with the neurosurgery department after his MRI last Monday. He passed his hearing test with flying colors, although because he had to sleep through the procedure, he was very upset with me on the way up there and waiting for our appointment time. We had been told that we would receive results over the phone after our MRI on Monday, but we received a call on Tuesday asking us to come into the neurosurgeon office on Thursday.
It was definitely a difficult few days as we began talking about what a consult with neurosurgery COULD mean. I felt like I was going to hyperventilate when I walked into the hospital on Wednesday for his hearing appointment thinking about the possibility of living back in the hospital for any amount of time. The neurosurgeon decided that the surgery could be put off until he shows us he really needs a shunt (which would mean the size of the ventricles are putting pressure on his brain). She does firmly believe that the surgery will be needed at some point. We were instructed to see our pediatrician every 2 weeks to measure his head circumference and discuss his behavior, and then to repeat the MRI scan in three months. The results were more than we could have asked for- more time with our little boy at home. More time to pray over our sweet boy with a full head of hair that God would choose to show himself as the ultimate healer.
A typical day at our house involves rolling out of bed in survival mode, followed by cereal, Brock’s meds (7 different meds in the morning, a handful of vitamins and meds throughout the day, and three more at night), a few phone calls, play time (or appointment), lunch time, scanning and filing bills, more phone calls or another appointment, dinner, bath, and bedtime. Add feeding Brock every two hours and that’s about it! It sounds so easy and efficient typed out that way, but I constantly feel like I am riding a bike while balancing plates on my head. We have a lot of crashes to say the least. Another thing…they kinda shove you out of the hospital to navigate a lot of this new, unknown territory by yourself. We are STILL working to set up physical, occupational, and speech therapy. That means feeding is still very, very difficult most days and we are still going at it alone. It also means that he is using the equivalent of what a preemie nipple looks like, and I have no clue how to get any more nipples and they are designed to use for a one time use. We’ve been rewashing and reusing for three weeks now. It means we wash 12 syringes a day- but probably need to order 100 more on amazon- or wherever you order syringes. Again, stuff to figure out. I spend a lot of time reading and researching things about brain development, chiropractic care, and essential oils. (Maybe I should google where to get more syringes or bottle nipples) I will try anything to avoid a brain surgery that would affect Brock for the rest of his life- it would mean a yearly visit with a neurosurgeon and a rapid sequence MRI. It would mean hitting at least our medical deductible every year for the rest of his life! That is something I pray we can avoid.
We are slowly entering back into society- but with extreme caution. I had a friend give us an amazing starter set of essential oils and we have been using them like crazy to help boost our immune systems, help with allergies, etc. We currently put frankincense oil on Brock every 2 hours- on the top of his skull and the bottoms of his feet. There is a lot of testimonial evidence that this has helped with seizure activity. This every two hour “ritual” has become such a blessing to me. I cannot do it without thinking about the fact that the oil was a gift to Jesus. ::Let that sink in:: It is my biggest prayer that Brock’s life will be a testament to the faithfulness of God and His healing power.
Today, I cried tears over my sweet baby boy, who no longer looks like a newborn, and who was coo-ing the daylights out of me. While he may struggle meeting many milestones that are ahead of him, he made eye contact, smiled, and cooed at Bradley and I many times today- and for that, I celebrate! In our world of constant ups and downs, this is certainly a very large up! I wish you all could see the video I posted on facebook- this site doesn’t have a place to post videos. If you are friends with us on facebook, I promise it will make you smile.
He is my living miracle. Thank you for following our journey- for praying for him- for praying for us. May you be blessed through his story.
Taryn
Brad Morrow , Jan 22nd at 10:42 pm
Brock's prayer warriors- we have an appointment at 9:30 am tomorrow with a neurosurgeon at Children's to discuss the results of his MRI. We were originally told we would receive results over the phone and then got a call asking us to come in, so we suspect they want to revisit the shunt idea. Please be on your knees that this isn't the case! And if it is their recommendation, we have time to get things in order, get a second opinion, find the perfect surgeon, and maybe get another MRI to verify that it is really needed right now. We are working hard with a chiropractor to allow the ventricles to begin draining again and would like to have some time to see if this will work before performing a surgery that will affect him for the rest of his life. I hyperventilated just walking into the hospital today for his audiology appointment- which he passed with flying colors! Please also pray for peace for Brad and I for whatever bumps are ahead. We have had several rough nights lately and I assume tonight will be no different...but prayers for a good nights rest and health are also appreciated.
Please be in prayer for Brock's big day...we will let you know the results as soon as we do!
Brad Morrow , Jan 14th at 8:41 pm
Brock’s 5 S’s: Swaddling, Side/Stomach Position, Shushing Sounds, Swinging, Sucking
Taryn’s 5 S’s: Starbucks, Sleep, Sweatpants, Showers, Solo Time
Brock's got a full schedule of appointments next week- please be praying for his repeat hearing test, as well as the MRI to check on the hydrocephalus.
We should have news to share on Wednesday...
~Taryn
"Too Tired to Come Up with a Catchy Title"
Brad Morrow , Jan 11th at 11:04 pm
Today’s accomplishments included getting a medical binder in order and updated for Brock, watching infant massage techniques for babies (since massage therapy isn’t covered by insurance), as well as lots of snuggles and even some outdoor time for all of us. It’s been a long time since I’ve spent any time outside unless walking the sky bridge or in a parking garage count. It was a beautiful day! We said goodbye to my sister, so Brad and I are officially on our own now. Unfortunately, the kids and I (Taryn) won’t be heading to church in the morning because we just aren’t comfortable with the risk of exposing any of us to something during this outbreak season.
While getting us all up and ready for church on time might typically have been considered somewhat of a “chore”, I would do anything to be able to stand and worship with my church family tomorrow- the people who have carried us spiritually the last month, who have delivered meals and groceries, who have cried with us about the brokenness of this world, who have seen us at rock bottom and loved us anyway. They have been and continue to be the Church- the hands and feet of Christ when we needed that so desperately.
Our bedtime routine still takes about half a century and while my sister was here, we were pretty much 1 on 1 for bedtime. Since she left, that wasn’t the case tonight and it won’t be the case next weekend when Brad is gone at Winterfest with the youth group. I'm not sure if I'll survive the 4 hour bedtime routine that tonight was by myself. Please be praying that bedtime can become an enjoyable routine for us all again. I feel very much like a walking zombie come bedtime- and an irritated one at that. Seriously, for all of you parents with three-plus kids- I salute you. For those of you (thinking of certain folks in particular) who are still clinically sane and have three kids within 3.5 years of age... you deserve some sort of shiny medal!
It is very apparent that Brynlee is still trying to process everything that happened. She says things like, “I’m so glad Brock didn’t go to heaven…”, while Brielle seems to just still be responding to us being separated- mostly by being extra clingy. Prayers are appreciated on their behalf...I don't like thinking about the fears they have had to attempt to process away from us and are so thankful for those who had to answer some tough questions for us while we were away.
Another prayer request would just be for Brad and I. We have not had the chance to really talk about anything more than Brock and immediate needs/logistics since all of this happened. That’s all there is time or energy for these days. So much of our day is still spent on auto-pilot, and we are aware of the need to find time for ourselves- both individually and as a couple. Please pray that we find time and ways to make that happen for us.
We love you all so much!
Brad Morrow , Jan 11th at 12:04 am
This was shared with me tonight. I feel like it's very fitting while we mourn over what we anticipated life would look like for us- and for Brock. Regardless of what the rest of Brock's life looks like, the present is filled with doctor check-ups, MRI scans, repeated hearing tests, and therapy appointments.
WELCOME TO HOLLAND
by
Emily Perl Kingsley
c1987 by Emily Perl Kingsley. All rights reserved.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Brad Morrow , Jan 10th at 4:00 pm
It was inevitable- the whole part where we have to pay for the past 4 weeks. The first bill came today and the emotions that I thought would follow as I opened the envelope were not even present. The reason opening the bill was not accompanied by sheer panic, and wondering, “how in the world are we going to pay this?” is because you all have significantly alleviated that stress for us. We have been gifted enough to cover our in-network out-of-pocket limit for this past hospital stay- which happened to cover two years. I am blown away at the ways God has provided through the generosity of people who know us and people we have never met. Brock’s medication for this month was $148.16. He will likely need those medications and yearly (or more often) checkups for the rest of his life. It is overwhelming…but so are the ways we have already been blessed.
God is so good. He cares for us. We love him so. He answers prayers.
~Brad and Taryn
Brad Morrow , Jan 9th at 9:15 pm
Today there were tears. Happy tears. Tears of answered prayers. Brock had his first pediatrician visit today since leaving the hospital. We have nothing against the pediatrician we are using for the girls, but wanted someone who came recommended, had some experience with brain injuries and would help us be proactive instead of simply reacting once we see delays. The pediatrician, who we had never met previously, walked into the room and said, “God’s got big plans for your little dude!” He listened to our story, our concerns, and was extremely helpful in giving us tips and resources. It was also brought to our attention that Brock had a severe tongue tie. Not a single speech therapist, lactation consultant, or doctor looked into his mouth the entire time we discussed his feeding issues at the hospital. So incredibly thankful for a doctor who is not willing to let brain damage be the answer to every issue he has. While cutting the tie did not solve every problem, it has helped. We left the appointment with several more people to contact and invite on this journey with us. We go back in two weeks for his two month visit…hard to believe!
There were happy tears Monday when we got the green light to leave the hospital. The ventricles had gotten slightly larger, but they were still not putting pressure on his brain, so neurosurgery will continue to monitor his hydrocephalus by having us come in for an outpatient MRI every two weeks. We’ve been full speed since leaving the hospital. Playing catch up with hugs, kisses, and the not so fun things like dishes and laundry…all while trying to have discussions with insurance, pharmacies, hospital financial groups, etc. Oh, and Brad’s back at this thing called work. It’s everything we were waiting for- “going home”…but it’s plain exhausting! No one is sleeping through the night these days- Brynlee wants to snuggle and doesn’t want to be alone, Brielle is cutting teeth and seems to be confused with the idea that you sleep when it’s dark outside, and Brock is doing the normal eat every 2.5 hour thing. We spent an hour or so rearranging things today so now we have a “sleep” room and a “play” room. Praying it means we all sleep a little better henceforth.
For the most part, things have gone smoothly. A few things have been anything but a smooth transition despite our best attempts to have all our ducks in a row well ahead of time. Our first panic attack happened just hours after leaving the hospital when going through all of Brock’s medication that Brad had picked up the day before at the pharmacy. It didn’t take long to realize we didn’t have all of Brock’s medication for his nightly meds. We tried calling the pharmacy, but no one answered. After a drive to Walgreens, a 20 minute wait in line with 10 other people (most who were sick), we discovered that they didn’t and wouldn’t have the medication because they have to send it out and wait several days for it to come in. They had failed to mention this when Brad picked up “everything” the day before. Tears were shed (not like the happy ones today)- and people behind the counter and in line quickly took pity on our situation. I contacted the hospital, but their pharmacy had closed also. With nowhere else to turn, and without an “if/then” practice situation to fall back on, we called the 10th floor and explained to the charge nurse what had happened, and she started calling also. I drove to the only drug store that CVS had mentioned that compounded medication in town, and explained our situation. Their compounder had already left, but they quickly got her on the phone and assured us I would leave with medication for Brock as long as they had it in stock. While waiting for his medication, I noticed customer after customer walk in and get asked personal questions. Not personal questions about their insurance, but questions about their life- their kids, their dog, their Christmas activities. THIS is the kind of pharmacy that I want to use for the next 18 years if need be. I left with medication in hand, and happy, thankful tears.
We’ve spent hours at this point verifying that each doctor that we have a follow up appointment with is in network, as well as checking pharmacy deductibles and generic/preferred medication options. We’ve researched therapy groups in town, and are waiting to hear back from them. We have an evaluation with ECI coming up, but we’ve been told he will likely not qualify since the evaluation is mostly based on performance (not scans) and since he is eating by mouth and tracking, he is not showing developmental delays. The frustrating thing for me as a parent is that I don’t want to wait for him to “fail” before he gets help. I want to be proactive as possible, and the pediatricians we had at the hospital as well as the neurologists all reiterated that what we can do for him the first few years will make a lifelong difference.
People from church are providing meals Monday, Wednesday, and Friday which has been a huge blessing. On top of everything being delicious, it’s more time to sort through all of this stuff, spend time with each other, and get a routine established. A friend of ours contacted a cleaning company (www.maids.com) when we first got put in the hospital, and they are doing three months of free cleaning for us on top of the first seasonal deep clean. They did the initial clean just before Christmas and came again Tuesday, which was wonderful. They do an amazing job! Not sure what they charge for a cleaning, but we will soon find out because I plan on finding a way to continue their services. My sister is also currently staying with us and helping, which has been a complete life saver. She is babysitter, errand runner, anything we need her to be, and I am so thankful it worked for her to be able to do this. All of our dirty laundry was picked up yesterday by a sweet family from church. She even said she’d wash our underoos. We’ve had people offer to stay at our house to watch kids, to help at night so we can get a better nights rest, and help with yard work. Others have dropped off food, toys, or called to check in. We seriously cannot thank each of you enough. We could not do this without you. I feel like we are barely surviving WITH you and your help. Please don’t stop.
Please continue praying for the therapists and doctors that will join us in Brock’s medical journey. Pray that we stay healthy despite everything going around, our lack of sleep, and our occasional outing in public. Thank you so much for continuing to follow our story. We have certainly not passed all of Brock’s medical hurdles.
With love,
The Morrows
Brad Morrow , Jan 6th at 1:38 pm
We get to take our little super hero home today!!
~ Brad and Taryn
Brad Morrow , Jan 6th at 12:16 am
Brock’s MRI is scheduled for tomorrow morning. It is very exciting to think that we could be getting released from the hospital in less than 12 hours. On the other hand, tomorrow could take a different route…but I am not even letting my mind go there currently. All of Brock’s medication has been called into an outside pharmacy and is currently waiting for us to pick up. We have names and numbers of people we could potentially need to contact. We’ve been over many if/then scenarios. Our pediatrician has encouraged us to be extremely cautious, but to live and enjoy life- to go to church, to not change our schedules as to never get Brock out in public. However, it is flu and RSV season and either are guaranteed to land us back here.
So, with all that said…if you see us in public, don’t be surprised. Know that we are trying to live and enjoy life- we’ve been reminded of just how quickly things can change. We aren’t guaranteed tomorrow. At the same time, we have a baby whose immune system would be weak anyway, but is now even more compromised due to 28 days of antibiotics to fight a terrible infection. When you see us, please don’t try to touch Brock; please don’t come near if you’ve had fever, or even a runny nose. I have become extremely aware of the fact that a small runny nose for an adult could easily be RSV that sends a baby like Brock into the ER with breathing complications. We have to be extra careful to keep Brock well; to keep all of us well. This is very much a first for us. We are learning about how to go about all of this in a non-“mama-bear”/”papa-bear” way. Please know the last thing we ever intend to do is hurt anyone’s feelings. We know you want to see Brock, and to hold him…we wish that you could, but it’s simply not safe for him to be passed around, kissed on, and snuggled extra tightly at this juncture. Those days will come. In the meantime, love on him from a distance- that shows us how much you love us, really.
What we need to see in the MRI scan tomorrow is that the fluid is not putting any excess pressure on his brain. The ventricles could potentially be the same size, although that would likely bring us back much sooner for another out-patient MRI. Ideally, (best case scenario) the CSF (cerebral spinal fluid) will have begun draining the way it’s supposed to- down the spinal cord. As long as the ventricles remain larger than normal, the VP shunt is still a future possibility. We have made friends here, and today was spent saying goodbye to many amazing nurses that have loved on Brock and blessed us on this journey. I pray we made an impact on them, just like their love and attention to Brock has impacted us. It is certainly easy to see how this is so much more than a job to many of them. They rejoice with us- and are rooting for great results from his scan.
Please pray for results that mean we can leave the hospital…or better yet, never need to have a follow-up with neurosurgery. We are very eager to feel like a family of five again- to eat dinner together, laugh together, dance together, and pray together. I look forward to conversations with Brynlee about how God answered her prayers to bring baby Brock home. It’s really neat to hear about things she has prayed for while we have been here in the hospital. Even at such a young age, this has shaped how she prays. She prays more than anyone else I know…literally- for pretty much any reason you could think of. She prays in the car, alone in her bed, mid-conversation, before meals, DURING meals, on the playground, etc. I hope that desire to talk to God is never quenched. We have so much to learn from her.
I haven’t expounded here what exactly the specific treatment will be if the results of the MRI do NOT show what we are hoping to see. For our sanity, we’d almost rather not know- as if NOT KNOWING will make it less likely. But we have to focus on positive outcomes being this close to the “end”. I wonder what the extent of Moses’ sadness/anger was when he learned that he would not be allowed to lead the Israelites into the Promises Land, being able to see it but only sitting on the edge of it. I bet I would feel a lot like he did; the difference being that we’ve been wandering through this exhausting hospital journey for exactly 4 weeks, whereas the Israelites wandered the wilderness for 40 years. That being said, we’re told to prepare for what could very realistically be a 40(+) year situation with Brock’s health. If that’s what the future holds, then I pray we use this time of questioning and “wilderness” as a conduit lifelong spiritual growth. I suppose it would be more accurate to say, I pray GOD uses this time and experience in such a way that we may better learn what it means to be made in God’s image and how we reflect His glory in a way that makes his Kingdom grow. I don’t know how that would happen, but we know at least two things to be true: 1) God loves us deeply, 2) despite whatever situation we find ourselves in, God can make something good come out of it. We simply cannot say it enough times in enough ways… THANK YOU for being here for us. 2013 was the hardest year of our lives dealing with this hospital visit, but it was also the best- BECAUSE OF YOU! (Or rather, God working THROUGH you.) Allow Brock to be in your prayers come about 8:00am.
Grace and Peace~
Brad and Taryn
Brad Morrow , Jan 5th at 1:02 pm
No man is complete unless he is conducting grace, like electricity, between God and another person.
~John Piper
My 2014 New Years resolution....to be a conduit of GRACE. Grace in my marriage, in parenting, and in relationships. Grace to myself, my spouse, my children, my friends...and even doctors and insurance companies.
~Taryn
Brad Morrow , Jan 3rd at 6:19 pm
“When sorrows like sea billows roll…
Whatever my lot, You have taught me to say,
It is well, it is well with my soul.”
Our neurologist stopped by again today just to say hi, and our few questions almost immediately brought the words, “I hate to continue to be the one who bears bad news…”. He reiterated the fact that Brock will have to show us what he can do- whether he will walk or talk; none are guaranteed. “It doesn’t take much to be a baby” and “despite the fact that he looks great, it doesn’t change the fact that his brain has suffered a huge attack” were other phrases from our conversation. I want the doctors to be wrong. I need them to be wrong. I struggle to think of life without what has always been normal. Toting our family to youth camp up in the mountains is not really a possibility when it would take well over a 30 minute drive to get to a hospital. What I would give to not have to explain to Brynlee and Brielle why their brother is “different”; to not have to consider who would care for Brock if something were to happen to both of us; to not think about the stares of people that are sure to ensue if the neurologists are right about his prognosis and not meeting milestones. Will I be able to attend Sunday school classes? Will I ever be able to work outside the home? What will summers look like? Selfish questions. Honest questions. I dread feeling out of place, and needing to constantly give explanations. None of that is my current reality. While I in no way want to limit Brock, I certainly don’t want my expectations so high that I feel like he has failed. I want his best to always be good enough for me. I want to live life like this didn’t happen, to take him places and see him experience the world, and to do that as a family. I want to still have date nights and anniversary getaways. It’s overwhelming how much will change because of one tiny germ that wreaked havoc on Brock’s body.
I look at our family Christmas picture this year and I weep at what was so perfect. I desperately wish that this was someone else’s story (or at least, NOT OURS- I wouldn’t wish this pain of uncertainty on anyone else), and that I could just have a supporting role. We have been so blessed by those of you following and praying. Please don’t stop… we need those prayers.
Obviously it doesn't seem that all is "well with our souls" at the moment, but we pray that God leads our hearts to that place whether or not it comes down to the worst case scenarios.
"Though Satan should buffet, though trials should come,
Let this blest assurance control,
That Christ has regarded my helpless estate,
And hath shed His own blood for my soul."
~Brad and Taryn
Brad Morrow , Jan 3rd at 8:43 am
This video was taken of Brock when he was in the ICU (and still intubated)...it's an amazing reminder of the power of prayer. Three weeks ago we were looking at the possibility of a very different outcome, and today, we are being prepped to go home on Monday! Please continue praying that Brock stays healthy and all scans show we are cleared to go home!
http://mgmorrow.com/brock/index_BrockVideo-MP4auto_140203.html
Thank you Aunt Chandra for capturing these moments and creating this video!
Brad Morrow , Jan 2nd at 11:22 pm
Things have been slow around our room the last few days…and it’s a very welcomed change. We are down to vital checks every 12 hours, weight/head circumference checks at noon, meds at 9 am, 3 pm, and 9 pm, and visits from PT (physical therapy), OT (occupational therapy), and speech therapy. Our pediatrician has been wonderful at trying to make our last week here as “normal” as possible. We are no longer bothered by nurses once we get his 9 PM meds down, and we have a green light to let him sleep from 12-6 am without waking him for feedings. Better yet, the last two nights he has actually slept almost that entire 6 hours! He continues to gain weight (at the pace of a turtle), but slow and steady wins the race. Dr. Gore (overseeing his care) sees no need to fortify breastmilk at this point to add extra calories, so we are working with speech therapy and a lactation consultant to try and establish a better nursing relationship.
Yesterday, they drew blood to check a few levels, one being his CRP (c-reactive protein) which rises due to inflammation. Since we were not able to get CSF fluid from the lumbar puncture, the doctors are looking for any indication that the infection has been treated…and his CRP number being much lower (.3 compared to 11) was definitely something to celebrate! Neurosurgery is watching his head circumference measurements closely, and we will either have a sonogram or MRI done before we are able to leave the hospital. Because the sections of his skull are overlapping in a couple of places at this point (due to enlarging because of the original swelling and shrinking due to the dead cells), the doctors are afraid they will not be able to place the sonogram probe correctly to see what they need to see…but an MRI would likely keep us here longer because he would need to be sedated/monitored for 24 hours afterwards. Another possibility would be a rapid sequence MRI, but it takes extreme coordination/planning since you are trying to take pictures of a baby being very still on their own (SLEEPING). If you’ve ever spent any time in a hospital at all, you understand they operate on their own clock and getting a just fed, newly diapered, SLEEPING baby down to radiology and straight into a room is practically unheard of. Please, please be praying that the CSF fluid is draining, the ventricles are no longer larger than normal, and we can officially forget we ever heard the diagnosis hydrocephalus (and the possibility of brain surgery).
We’ve tried every option on the cafeteria menu, and the Starbuck’s in the hospital closed…so we are officially ready to break out of here.
~Brad and Taryn
Brad Morrow , Dec 31st 2013 at 11:07 pm
We trust an UNKNOWN future to a KNOWN God.
~Brad and Taryn
Brad Morrow , Dec 30th 2013 at 8:44 pm
The consensus from the doctors is that instead of risking the Ventriculoperotoneal Shunt going through potentially infected tissue to relieve the "pressure" of fluid buildup, it is safer in his case to just leave him on antibiotics for another week and hope (pray) that pressure buildup does not become an issue.
So I put up some of his MRI pictures (I hope I'm not breaking the law or anything- although, I guess we did pay for them) for any of you interested nerdy types. Follow the PHOTOS tab at the top. I put a little caption by each one briefly explaining it. I'll go ahead and give you my professional radiologist report on each one (I won't charge you $500, either!)
The more RECENT (third round, today- 12/30) scans are on the LEFT, and the older scans (second round- 12/16) are on the RIGHT.
1- *EDIT*- I've since deleted this picture from the album, realizing that it doesn't really help anybody to see that scan. It's really just the hydrocephalus that I'm trying to explain today, anyway. So you won't find this particular scan-slice in the album. In addition- we're not all that interested in other diagnosis opinions, and I'm afraid we'd get a bunch of "Well my friend's nephew's cousin's brain was damaged in the same spot and..." etc. Hope you all understand. Ok, continuing... You can see on the left how bright the bottom left area of the brain is. That area is associated with vision, though it's impossible to tell in what way that will clinically affect him. He can obviously SEE and follows things with his eyes. Like his hearing though, I guess that could potentially get worse. The scan on the left shows the a smaller area, but you can see the areas that are left comparatively darker than the rest of the brain- those are the permanently damaged cells. Those cells (as I mentioned in the "Back-Flip" post, could end up basically dissolving out and be replaced by C.S. fluid... or just stay there, hard to tell.
1-3- These are the pictures that show the obvious Hydrocephalus (water in the brain). The earlier scans on the right side show all of the very bright distressed cells, which have since become NOT inflamed, and/or died and dissolved and gave way for the ventricles (which are typically MUCH smaller) to collect more and more cerebral spinal fluid to replace the space once occupied by brain cells. The... fortunate(?) thing in Brock's case is that his skull has room to move and grow with increased pressure (as with any infant). We just have to make sure that the pressure doesn't get TOO HIGH because that could result in further damage. We will have to keep a close eye on his head circumference and, mainly, his behavior, to stay on top of potential issues. The doctors agreed that this is a better route of treatment than the Ventriculoperotoneal Shunt as of RIGHT NOW. We are praying it doesn't ever necessitate that surgery, but it's at least a possibility.
4- This last picture is just showing again the bright, inflamed tissue on the right with the more average sized-ventricle, and then the less inflamed tissue on the left with the larger than normal space of cerebral spinal fluid.
If any of you are attorneys who happen to think it's not good for me to put these pictures up, would you go ahead and notify me? :-) Thanks.
Our Neurologist that Brock will be seeing for the rest of his life enlightened us a bit as to the "long-term" plan as far as medications go. He's on Phenobarbital, Keppra, and Topamax. He will continue taking each of those meds following the same dosage that he has been on here at the hospital. Brock will eventually gain weight and the dosage will effectively be smaller as they won't change his dosage to continue to match his size. He said that when he has another seizure (not "if", but "when") then we'll discuss in what ways his medication/dosage may need to change. He fully expects that Brock will continue to have seizures long into the future. That would be a harsh and scary reality. He reiterated that seizures are a symptom of the brain damage, and that many of his patients who have damage that is not even visible on an MRI have to take seizure medications constantly. Brock, who has a considerable degree of VISIBLE damage, will likely continue to have seizures as an ongoing symptom.
He sure seems tired at the moment, nice and cute and baby-like. It's hard to believe ANYTHING is wrong when you look at him. He has had trouble with spitting up a lot today for a couple of feeds- this can be a bad sign, we're really hoping it's not one though.
We recognize that nothing is for CERTAIN it seems- and we simply ask that you pray for our peace, patience, comfort, wisdom, and understanding through all of the uncertainty. When I think of the beginnings of the respective faith journeys of Abraham, Isaac, Jacob (Brock's middle name), Joseph, or even the New Testament guys like Peter or especially Paul- all of them seem to have started out in an overwhelming state of uncertainty. Some of them seemed to be uncertain for a considerable amount of time in their ministry (if not most)- perhaps surprised at every turn. I think of Paul who, even in the midst of great adversity (beaten, stoned, whipped, etc), found comfort in knowing the Kingdom was SOMEHOW advancing through God's use of Paul's love for Him. I think of John the Baptist whose task was to "make straight the way of the Lord"- to make the mountains low and raise of the valleys. I wish I could do that for Brock in a very physical sense: make his mountainous hurdles disappear and let all that he faces be flat ground. Taryn and I both feel fairly helpless in this regard, and know that God alone can make the mountains move from in front of him and jump into the sea- and we pray earnestly that, whatever that means, that may happen.
We both feel pretty overwhelmed right now, especially with the beeps and alarms going off every couple minutes (stupid wires...). I know, out of principle, that God is near- pray with us that we experience in more and more real ways how His presence will manifest in this chaos.
“Come to me, all you who are struggling hard and carrying heavy loads, and I will give you rest."- Matthew 11:28 (CEB)
Brad Morrow , Dec 30th 2013 at 4:16 pm
It's probably no surprise that my favorite roller coaster (to date) is the SUPERMAN at Six Flags... the one does the back flip around the giant superman statue. Perhaps it's appropriate that we call him "SuperBrock", because he's taken us on quite a ride the past couple days. Well, buckle up. The rollercoaster is getting ready to plummet again.
We were HOPING that the news we would get today would all be good, and we did receive some good news. For one thing, the MRI results seem to show that MOST of the areas that were effected from the meningitis were mostly just inflamed tissue that has gone back down, leaving only small areas of actual damage (which we already knew about; we just didn’t know how much was inflamed cells as opposed to damaged cells). The areas of tissue damage (without getting too technical) are several little pea-sized areas at the front of the brain, and a penny-sized area at the back right, which is an area related to vision. So it is good news that the actual damaged areas are MUCH smaller than what they could have been. That’s certainly something to rejoice about. From there on we get not-so-good news:
First of all, even the attending anesthesiologist (who does more spinal taps than anyone in the hospital) was unable to obtain cerebral-spinal fluid after several spinal tap attempts. The neurologist guessed it’s for the same reason that existed before: areas of inflammation around the meninges are still restricting fluid down to that small space where the puncture is attempted. This is a major downer because the infectious disease doctors have been wanting to see the change in cell-counts in his CSF for what seems like MONTHS (ok, so 3 weeks). We are still waiting to talk with them today, but this could mean that they will go ahead and keep him on the Ampicillin (antibiotic he’s been on for 22 days now) for …another few days? Week? Two weeks? There ARE other ways to get spinal fluid, like attempting a puncture higher up, but then we’re talking a major increase in risks because we’re dealing closer to the brain stem (scary). I’ll add an update when we know more about that.
Second of all, the MRI revealed one of the three things I mentioned that they didn’t want to see, which is, a buildup of fluid (cerebral-spine fluid). This is probably related to the reason they can’t get spinal fluid from the lumbar puncture site: most likely there’s an area of inflammation that, in addition to not letting spinal fluid down his spine, is causing a buildup of fluid in the ventricles in the brain (like a highway pileup). The initial MRI showed us that the brain tissue was so inflamed that these ventricles in the brain (on an MRI slice you would see them as spaces of black in the middle of the brain in the shape of mirroring V’s) were very thin, like they were being pinched by the encroaching brain tissue. Well, now the brain tissue swelling seems to be going down. In addition to that, it’s likely that his actual brain is SMALLER due to the infection… like some tissue has simply “melted away,” as one of the neurosurgeons put it. Due to these things, the ventricles in the brain that hold (and drain) spinal fluid, are now significantly LARGER than normal. This is called “Hydrocephalus”- water in the brain. So, this is due to either 1) inflamed meninges not allowing the fluid to drain down properly, OR 2) the spinal fluid is simply taking up the space that the brain tissue has receded from (as it is designed to do).
When the neurologist, which is different from a neurosurgeon (you got it WRONG Grey’s Anatomy!) came in to show us the MRI results from today, he said that the neurosurgeons might recommend performing a “Ventriculoperitoneal (VP) Shunt” today- which is essentially a straw/catheter that they poke through the skull and brain tissue into the pockets of excess fluid to drain it to the appropriate pressure levels, and then gets pushed down to skin level and stays the rest of his life. This is necessary for many individuals who are at risk for constantly increasing brain pressure, which, left unchecked, leads to brain damage. As it turns out, they might NOT be doing that since they can’t PROVE (without the benefit of seeing cerebral spinal fluid that they’d get from a successful spinal tap) that the infection is totally gone. The last thing they would do is go THROUGH a potentially infected area and into the ventricles in the brain… that would be bad. Neurosurgery seems to be leaning towards just monitoring his head circumference and general demeanor (feeding habits, irritability, etc) to determine if the pressure in his brain is getting too high. They said that at the MOMENT, there’s no reason to rush into a surgery that he MIGHT NOT need and that would affect him the rest of his life, especially if it seems that pressure in his skull is not dangerously high. Here's a link that explains very easily what a VP Shunt is and how it works, etc- if you want to read it: http://www.healthline.com/health/ventriculoperitoneal-shunt?toptoctest=expand
So here’s the basics:
- No increased damage (currently) to the brain tissue beyond what we already knew about. In fact, MOST of the affected tissue was simply inflamed and not permanently damaged.
- No brain abscesses were evident (according to initial reports)
- The Lumbar Puncture failed (again, even by the best of the best)- probably due to a “dry” area caused by the number of punctures he’s had, or the inflamed meninges tissue in that area not allowing fluid to go past a certain point.
- We are still waiting on the team to consult with the Infectious Disease team to determine what the course of action is going to be at this point.
- It’s looking like Brock will NOT be going home this week (as of 3:39pm, anyway).
Aye-yai-yai… I told you to buckle up, right? Taryn was able to sleep a bit at home last night which is good, because I’m not sure she’ll want to leave the Hospital now. Staying up with him and not letting him take a bottle because he had to fast for 8 hours before the MRI was difficult, as you can imagine, but not as bad as it could have been. When we learned he wouldn’t be allowed to nurse or take a bottle last night I told Taryn she should go home and rest since there wasn’t any point in BOTH of us not sleeping. He is now considerably gassy, poor guy, and not feeding as well as he was earlier due to the sedation and everything. It’s also very difficult for Taryn or I to hold him very comfortably because he has to have respiratory, oxygen, heart rate, and blood pressure hook-ups for at least 24 hours after the sedation this morning. Hopefully that won’t make tonight unnecessarily difficult; although, it probably will because none of the leads stay on very well and alarms start going off every 3 minutes interrupting every conversation, ugh. So there’s a bucket of things to pray for if you’re prayer list is getting short.
Sorry this post isn’t as theological or poetic (or short) as previous ones… We are still processing all this information and still living in a currently unknown future, so we haven’t quite had time to really think through what this means. Hopefully the Infectious Disease Doctors will be by soon and, whether good news or bad news, we’ll at least know what the plan is going forward.
We continue to thank you for your tremendous love and support of Taryn and I and our girls. Laurie Frantz and Hollee Ford even stayed up here a few nights over the past couple weeks so that Taryn and I could stay together in our own bed at home, which is an exceptional gift during this time. Our sweet dog Zoe was even being spoiled at Jake Randall’s house- thank you guys! Also, my youth group went above and beyond for my family this Christmas. I had plans for a White Elephant Christmas party at the Holts' house, and when this whole thing happened, the Holts and the youth group decided to make sure that Christmas for our family didn't go down the drain with us not being able to go out and shop for each other. They bombarded Brynlee, Brielle, Brock, Taryn, and even me with presents that brought huge smiles to each one of us- even with all that's happened. Man, they sure are incredible- love them! We love you all so much, and couldn't imagine going through this with anyone other than all of YOU. God bless you. You have richly blessed us with your friendship during this time.
Grace and Peace~ Brad and Taryn
Brad Morrow , Dec 30th 2013 at 1:20 am
This evening, Brock spiked a fever right after shift change. While this would be alarming regardless, it was more so because the last time his vitals had been checked was 8 hours previous. The day nurse had forgotten to take his vitals at 4 pm, so we are unsure how long he had the fever before it was addressed, doctors were notified, blood drawn, tests run, etc. Please pray with us that Brock was simply being cuddled a little too tightly and that his body has not caught anything else or this fever is not an indication of something we will see on his MRI/MRV scans tomorrow (like a pocket of infection in his brain). Our floor has now been opened to accept any cases due to shortages of beds, so we now have a number of flu/RSV cases on our floor. This increases the risk of us or another nurse/doctor exposing Brock simply by accident, so we are doing our best to stay in our room and be extra diligent about hand washing and nurse watching (making sure they gown/glove/mask up, washing stethoscopes, etc). Brock will not be allowed to eat anything after 2 am because of the anesthesia, so please be praying he sleeps soundly and gets an early spot for the scan. Mondays are always catch up day, but we have been told infants are typically booked after trauma, but before other older patients. We are hopeful that the MRI will show a decrease in the amount of swelling, but even more so that there are not any pockets of infection that would require additional weeks of antibiotics. If the scans are good, and the glucose and white blood cell counts from his lumbar puncture are in the correct ranges considering what he has been through, we will be looking at going home this week!!
"This is the day that the Lord has made; let us rejoice and be glad in it."
~Brad and Taryn
Brad Morrow , Dec 27th 2013 at 3:08 pm
Meningitis, as you're aware, has a long list of issues that tend to follow in its wake. One of those is hearing loss. In addition to the meningitis damage on the rest of the brain, both inner ears were also affected/damaged by the resulting inflammation. It is standard to have a hearing test done with meningitis cases, and particularly in his, with the inner-ear damage.
So Audiology came today to perform this test, which includes some tiny ear-buds that go make a range of "audible" tones and volumes, and probes that stick to a couple spots on his head to monitor brain activity when the tone is produced. Obviously babies can't raise their hand and say, "I heard that" so they have to rely on brain activity.
She said she had to "work fast" once she started which I took to mean, "Don't ask questions or bother me until I'm done." She did say she would share results as soon as it was completed.
The test took about 30 minutes, and when she was done she said. "HE ACED IT!"
He will have to have a follow-up procedure in 4 weeks here at the out-patient clinic where they will repeat the test, and then every 3-6 months until he is one year removed from the infection because he is still "at risk" until that point.
They want him to gain little more weight than he is right now, so pray he is able to do that. Also pray that the subsequent hearing tests in the weeks and months to come will be "ACED" as well!
One of the resident doctors came by this morning and said they are very pleased with how Brock is progressing and that Neurology and Infectious Disease both want a MRI/MRV and a spinal tap on Monday or Tuesday. Hopefully they can do these together, as he will need anesthesia for both. The attending physician came in later and reiterated that he is doing great, and HOPES the results on Monday/Tuesday show good cerebral-spinal-fluid glucose levels, no worsening clots, no abscesses around/in the brain, and no lingering pockets of fluid around the brain. IF all these good things show up... THEY WILL DISCHARGE HIM EARLY NEXT WEEK!!!
Please pray that the doctors see what they really want to see so that we can finally go home, show Brock all his Christmas presents, and be together as a family eating meals, praying, and singing and dancing together again soon! If any of the above signs are not present, we'll be talking perhaps an additional 1-2 weeks on the antibiotics. Monday would mark the 21 STANDARD days of antibiotic treatment- so that's the reason for seeing how he has responded up to this point. Thank you all for your prayers, love, support, and visits- they mean so much!
"Let me HEAR joy and celebration again..." Psalm 51:8
Blessings
Brad and Taryn
Brad Morrow , Dec 26th 2013 at 3:36 pm
Brad and I cannot say THANK YOU enough for everyone who went out of their way to make yesterday as special for us as possible considering the circumstances. Thank you for each thought sent our way, each prayer that had Brock's name, each gift under the tree; we are so incredibly blessed!
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Brad Morrow , Dec 25th 2013 at 11:13 am
Merry Christmas from SUPER BROCK to you!
The doctors have begun their discussions with the infectious disease team, and as of right now, we are being told the doctors want both an MRI and another lumbar puncture (LP) to help them decide how many more days on antibiotics Brock needs before leaving the hospital. This will likely take place on Friday or Monday. In order to get the best possible images for the MRI, Brock will need to be sedated. Please be praying for the entire procedure- there are always risks when putting anyone under general anesthesia. Pray that the clot has SHRUNK, or better yet, DISAPPEARED. Pray that we will see a DECREASE in the amount of white on the scan (areas of his brain that are dead/inflamed). Pray we don't need additional weeks of antibiotics and can begin talking about getting Brock HOME!
I'm spending Christmas incredibly thankful for the progress our sweet SUPER BROCK has made over the last two weeks, and for the ways that you all have reached out to BLESS us in this journey.
~Taryn
Brad Morrow , Dec 24th 2013 at 11:49 am
Brad and I got to spend a few hours at Great Wolf Lodge yesterday afternoon and evening with the girls loving on them and hanging out with family. I came back up for the night shift at the hospital, Brad stayed there with the girls, and we are about to do a switcheroo. As fun as it is to be with the girls, it’s impossible to get the fact that we aren’t all together off my mind. Christmas has always been about being with family, and it’s the worst feeling to not be able to make that happen this year for all of us.
A few prayer requests for those of you following our story this holiday season:
Brynlee and Brielle are doing an amazing job, but it is easy to see how hard it is for them. Brynlee will beg us to stay and play with certain toys she has picked out when we tell her it’s time for us to leave, and Brielle just becomes inconsolable. It’s a lose-lose for us; we can’t be two places at once. Whenever the four of us are together, it’s very difficult for me not to constantly be reminded that part of our family is missing. Please pray we all stay healthy and our immune systems stay strong despite the changes in sleep, diet, and daily schedule.
Brock is not meeting the weight gain that the doctors want to see, so we are no longer allowed to breastfeed. The doctors want to be able to know exactly how much he is eating and how often so they can decide any additional changes that need to happen in his diet. Please, please, please be praying that he starts gaining the weight that they want to see and we can begin establishing nursing again. Without getting into a ton of details, pumping is tremendously time consuming and difficult for me emotionally, as well as something I don’t think I can commit to long term. It’s a selfish thing to pray for, maybe, but the weight gain has to happen for us to be able to leave the hospital.
Thank you so much for taking time to laugh and cry with us through this journey...
Blessings,
Brad and Taryn Morrow
Brad Morrow , Dec 23rd 2013 at 10:42 pm
...Just in time for Christmas pictures!
~Brad and Taryn Morrow
Brad Morrow , Dec 23rd 2013 at 12:49 am
“The sun comes up, it’s a new day dawning
It’s time to sing Your song again
Whatever may pass, and whatever lies before me
Let me be singing when the evening comes…”
Today has been an incredible day where we have seen huge improvements with our sweet son. Since moving out of ICU and onto the 10th floor, he has still been sleeping about 22 hours of the day. While that is definitely not typical of a baby his age, it is something we had been told was normal after such a traumatic injury. Today, however, he was awake almost 5 hours (and there is still plenty more hours to party tonight). During his awake periods, he is beginning to exhibit much more typical newborn behaviors. His doctors are impressed with his milk intake (he is eating about 3 oz. a feeding), and they are now allowing us to wait for him to show hunger signs before feedings (as long as we don’t go over four hours). He has been a champ and taken all of his medications by mouth with no issues, so they have agreed that the feeding tube can come out tomorrow! Side note: “With no issues” just means that he hasn’t thrown them up or spit them out to the point where they have to get more medication…it’s still close to a 10 minutes process and far from “no big deal”. Regardless, this is a huge step and we are very, very excited about having one less tube!
Thank you so much for your continued prayers!
~Brad and Taryn Morrow
Brad Morrow , Dec 21st 2013 at 4:01 pm
I typically think of myself as the main hero in my imagination. But I think I'm perfectly content to be this little boy's "sidekick."
~Brad
STRENGTH TO STAND - FAITH TO FIGHT
Brad Morrow , Dec 21st 2013 at 3:40 pm
There is so much that I feel like was laid on my heart for this time. Weeks and months before Brock’s arrival, and before his illness, I look back and see God preparing me for this story- OUR story: events and experiences that meant a lot to me then, but are everything to me now. They have become my strength and my hope when doctors give a grim diagnosis.
In high school, my youth group traveled to Missouri every summer to help at Camp Barnabas- a camp for special needs children (http://www.campbarnabas.org/). I fell in love my first summer with a little boy named Louis. He had down syndrome, a crazy obsession with rubber snakes, and at 7 yrs of age was still completely non- verbal. My week at camp was spent experiencing life with him, and helping him do things any other child would do while at summer camp- s’mores by the bonfire, swimming during free time, riding the zip line, etc. I went to camp to bless others, but walked away incredibly blessed by their energy and love for life, and for the One who made them in His image. Camp Barnabas was one of my first thoughts I had after we received the results from Brock’s initial MRI. I remember asking the neurologist, “We are talking about a child who will have significant setbacks, but we are talking about taking a baby home, right?” Although the implications are still far from realized about what life for Brock or for us will look like, we know we are blessed to be (Lord-willing) taking him home at the end of this. We’ve seen and met families in this journey who have not had the same outcome and would trade with us in a heartbeat.
When I was pregnant with Brock, I came across a necklace on a website that had the saying “Her faith is stronger than her fear”. I posted the phrase on the wall in our bedroom as we prepared for Brock’s arrival. I remember reading it over and over again as I labored at home and brought Brock into this world. A few days ago, a good friend mentioned it to me again, not knowing that the phrase already carried significant meaning to me. Satan cannot have a foothold here…and I cannot let the fear of the future dictate my decisions or my ability to believe God can still choose to heal him completely and will be present with us even if that’s not the case. “As for me and my house; we will serve the Lord.” (Joshua 24:15)
“You hold my every moment... You calm my raging seas... You walk with me through fire... And heal all my disease... I trust in you, I trust in you
I believe You’re my healer... I believe You are all I need... I believe... And I believe You’re my portion... I believe You’re more than enough for me... Jesus You’re all I need
Nothing is impossible for you…You hold my world in your hands.”
I heard this song for the first time at the Women of Faith conference this year. Never in my life did I imagine that three months later this song would become a prayer from me begging God to spare the life of my son- to provide healing when doctors have little hope for complete recovery and when I have no words. It played several times during the 12 hours it took to bring Brock into this world, and it has played hundreds of times since in this little room that has become our home away from home.
Regardless of feeling like God may have been preparing me in some ways for this, I still feel weak. It’s very much like being thrown into water and not knowing how to swim. Medical words get thrown around and I go under then struggle back up gasping for air. The realities of Brock’s diagnosis are beginning to surface- both in my mind and in the conversations we have on a daily basis with the team of doctors that are following us. This week, feeding was a huge concern and we were definitely told to prepare for Brock to need the feeding tube when we left the hospital. However, the swallow study showed he was doing a good job protecting his airway, and we were cleared by speech therapy to continue practice feeding by mouth. Brock is learning to nurse again, and is taking to a bottle very well also. The past 24 hours, Brock has taken all feeds by mouth, and we haven’t had to use the feeding tube at all! We still put his seizure meds through the tube, so it cannot come out until he can prove that he can swallow the meds (which taste horribly we’ve been told). Hopefully that’s something we can accomplish this next week. Brock has been set back physically with the physical position that he was placed in while we were in ICU. His legs can no longer extend completely straight, so we are working hard with physical therapy to make that happen.
Praying that we can continue to take steps forward in faith, strength and peace, and that Brock continues to amaze the doctors. And may the God who continually counts our tears receive honor and glory through this struggle. “Therefore, I will boast all the more gladly in my weaknesses so that Christ’s power may rest on me.”
~Taryn
Brad Morrow , Dec 19th 2013 at 7:18 pm
Brad Morrow , Dec 19th 2013 at 7:09 pm
I never expected to be in the hospital with my 3 week old, to hear the words “permanent brain damage” in relation to my child, or to have the excitement of our first Christmas as a family of 5 disappear as I fight to simply survive this emotional and physical roller coaster. As I reflect on the Christmas story, I suspect Mary had several of those same feelings. She never expected to be visited by an angel, to be told she was going to have a baby, and to deliver that baby in a stable with nowhere but a manger to lay him in. “May it be as you have said” has not been my response. I still wish this was not my story. But the more that I accept it, the more that I am blessed by it. I am blessed when I see how many of you are following Brock’s story and lifting him up to the Father in prayer, when I go home to find it has been cleaned and repairs have been made, to find wrapped gifts under the tree, and medical bills being paid before they’ve even been received.
We were told two days ago to expect Brock to have significant delays and issues with feeding by mouth- that he may never nurse again and we might go home with a feeding tube. The swallow study done yesterday showed that Brock is definitely out of practice with his suck/swallow/breathe pattern and he fatigues quickly, but that he was not at high risk for aspirating. They moved his feeding tube from his duodenum to the top of his stomach, and he is now getting 78 ml of milk every 3 hours instead of having the continuous feeds. At each feeding time, we have 15 minutes to let him eat by mouth- letting him take no more than 7 sucks before tilting the bottle down to make him rest for about 10 seconds. Whatever he has not eaten at the end of 15 minutes is then put into his feeding tube, but not before checking the placement of the tube with a stethoscope- which Brad and I have both been taught how to do. We have also learned how to give his anti-seizure medication through his tube, but we are hopeful he will soon be able to take it orally, that he will complete his feeds orally, and we get rid of that little yellow tube!
Last night, Brock began running fever, and today it was confirmed that he has a small cold. Please pray his body can fight this quickly! His normal cuddly self is rather irritable, and he isn’t allowed to be swaddled while he is running a temperature, so it results in crying baby and sleepy mommy and daddy.
Brad and I have been able to break away from the hospital scene a few times. Last Sunday, we went to watch the girls’ Christmas program at church, and today, I was able to go to their preschool Christmas parties (see pictures above). It’s great to have family and friends who are willing to sit with Brock so that we can be involved with the things the girls are doing. Both girls even got to come up for a very short visit today. It was so great to be all together…to not feel like I was choosing one child over the other.
It doesn’t take long in a hospital to realize that this building is full of people who imagined their life another way.
In the midst of this, we are blessed, God is good, and we are certainly not alone (http://russellfrantz.com/2013/12/19/solidarity/).
~Brad and Taryn Morrow
Brad Morrow , Dec 19th 2013 at 6:55 pm
Looks like we will be ringing in the New Year here, hopefully being released from the hospital sometime the first week of January...
Children's Medical Center of Dallas, 1935 Medical District Drive
Floor C-10; room 259
~Brad and Taryn Morrow
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Brad Morrow , Dec 18th 2013 at 1:00 pm
At 1:30pm today Brock will undergo a swallow study to determine if we will be able to continue trying to feed him by mouth or not. If he is aspirating (breathing fluid due to him not closing off his breathing tube while swallowing) then we won't be able to try bottle feeding for a while. If he passes, then they'll move the feeding tube up to the bottom of his stomach. The tube currently goes past his stomach and into his intestine (less risk of reflux that way). They will add barium dye to some breast milk and track the fluid with a series of X-rays and the hope is that he is able to keep from breathing any of it. Prayers that he does well, please. http://www.webmd.com/digestive-disorders/upper-gastrointestinal-ugi-series
We should have results as soon as the study is over.
Brad Morrow , Dec 17th 2013 at 6:22 pm
You know that story in Luke 7 where a woman (“a sinner” it says, presumably Mary, according to John 12) was in the house of a Pharisee, and she washed Jesus’ feet with her tears and dried them with her hair? It’s always painted as a beautiful portrait, almost poetic. In my imagination, though, it’s always been sort of… unflattering. My mental image thinks of a 5 year old boy whose mother just told him to wash his own feet after stomping barefoot through the mud: SORT OF clean, but not REALLY- hints of mud still showing through cracks and crevices. “How could she have cried enough to REALLY get all that dust and grime off his feet? And even if she did, how can you dry something with hair?” Not to detract anything from the real point of the narrative, but it’s the story that’s been on my mind this afternoon.
I have certainly wept extensively over my own brokenness throughout my life, and though I’m 100 times more emotional than I ever was before having kids, I typically never cry much at one time. Perhaps that’s my struggle with the Luke 7 story, I’ve never been able to imagine enough tears at one time to adequately clean two feet.
I think I have a better understanding now of how that might work. Holding our little boy today, we weep not over our own spiritual brokenness as Mary did, but over our son’s physical brokenness. Just as there was nothing Mary could do for her own spiritual state, there is nothing we can do to reverse time for Brock. I know countless parents have felt this way. Perhaps that makes all the difference: it’s not too difficult to hold back tears for yourself, it’s a different matter when it’s your own child.
The past two days he has had speech therapy come in and work with Taryn on helping him nurse and take a bottle. He still has the feeding tube in, and he’s taking only breast-milk. He has failed both of those tests because he has been making sounds that typically denote aspirating, meaning his suck-swallow-breathe reflexes/muscles are out of practice (due to the breathing and feeding tube). The speech therapists believe that the risk for pneumonia is too high to try for any extended amount of time (lest fluid be going into his lungs if he’s not drinking the right way). The neurologist consulted the MRI and there’s a high likelihood that a portion of his brain that controls those reflexes were affected in the initial stroke, meaning he could have to totally re-learn something that was completely instinctual before the meningitis. Several therapists and doctors have already mentioned the chance of him going home with a feeding tube (3+ weeks from now) if he hasn’t mastered that basic skill. And they don’t just mean for a few weeks or months, but potentially years- as if he might NEVER learn how to swallow, etc.
It’s incredibly difficult to see how well he has done with most of the acute symptoms and setbacks from the meningitis, but to see what could potentially be his future in the long-run with these other hurdles is so painful. God deserves all praise for the progress he has made so far- but MAN it’s so hard to take time to express our overwhelming thankfulness for that when it seems like the real burden is still ahead of him. Please don’t stop the positive comments, and please don’t stop the prayers on his behalf. I have to admit, though, it’s easy to get frustrated when a comment makes it seem like all the pain and struggle is behind us as if we’re totally on the other side now- which is hardly the case. I know that’s nit-picky, but that’s just raw, illogical emotion flowing out- still angry and sad that our little boy ever got this in the first place, still hurting for the innumerable hurdles still ahead.
It’s that sadness and hurt that arises as I hold Brock up on my chest, tears from Taryn and me pouring out all over his hair. Forget washing feet with those tears, you could adequately shampoo and bathe a whole person with them. Another foot-washing ceremony comes to mind from John 14 where Jesus is now the servant. Shortly after Peter refused to allow Jesus to do this and Jesus exclaims that he must be washed in order to “have a place” with him, he insists that Jesus bathe his entire body- as if to exclaim, “I want to be COMPLETELY yours! Get rid of everything imperfect inside me and replace it with yourself!” There’s so much more depth to this story- but suffice it to say that I feel like Peter right now, begging God to bathe Brock’s body completely in mercy and save him from the potentially long-lasting effects of this illness, begging him to bathe my family in peace and my daughters with sympathy and understanding.
Brock’s middle name is Jacob, as I laid out in a previous post. Well mine is his descendent, David. I don’t know what level of prophetic wisdom my own mother had in that decision, but those cheesy, over-simplified little Facebook “which [Bible] character are you?” quizzes typically denote that I am in fact, most like David. I’m no poet, but perhaps like me, David also wrote down his prayers for grace and mercy and guidance as a mere therapeutic tool. Perhaps that others may grow closer to God at the expense of his own shortcomings and brokenness. Who knows? However, I have always seen in David an honesty that I feel compelled to emulate. David’s life was a rollercoaster of triumph, defeat, ecstasy, agony, anger, and contentment. We’ve gone through all of those emotions in this rollercoaster. As tempting as it is to shout out fits of anger, resentment, or abandonment (which God is undoubtedly big enough and loving enough to handle), we still know God is somehow present through it all. And while we pray diligently for peace and mercy (as we hope you are, too), even through the anger and frustration (perhaps especially BECAUSE of that) we also sing:
“Come thou fount of every blessing
Tune my heart to sing thy grace
Streams of mercy never ceasing
Call for songs of loudest praise
Teach me some melodious sonnet
Sung by flaming tongues above
Praise His name, I’m fixed upon it
Name of thy redeeming love.”
Grace and Peace
Brad and Taryn
Brad Morrow , Dec 16th 2013 at 2:47 pm
As far as Hospital food goes, it’s not too bad here! I just had a grilled cheese sandwich with tomato soup (one of my comfort foods that ISN’T Blue Bell), and I wasn’t let down. Of course, I guess it’s difficult to mess either of those up too bad. From the cafeteria to ESPECIALLY Brock’s nurses and therapists, we are being taken care of very well.
Brock just met this week’s neurology doctor, Dr. Castro. She was impressed with how he is doing considering the damage he sustained. She said he is responding appropriately, even if he is a bit week. He has some very obvious swelling along the middle/top part of his skull that tapers off quickly when you get to the soft spots- but she said that should go down as the swelling continues to decrease.
As far as therapy, he’ll start seeing physical, occupational, and speech/eating therapists pretty much right off the bat. Pray he gets the VERY BEST ONES that do JUST THE RIGHT THING. Thanks.
It looks like we’ll be moving off of the ICU into a regular room! This is very exciting (though we’ll tremendously miss the care and nurses of the ICU floor- they’ve been incredible blessings to us) because we’ll get to be together much more as a family, and Brielle will get to see him in person. YAY! Our girls are staying with good friends of ours (Brynlee’s best friend’s house) and they are loving on them like their own- as I know any of you would as well. It’s comforting to know they’re being taken care of so well so we can focus on this little guy.
It’s been encouraging to see all the notes from people who have said that Brock’s story has strengthened their prayer life or their faith altogether. Praise be to God, it’s a testament to His power. Of course, I think we would probably still trade those silver linings for the chance to have NEVER even gone through this nightmare, or the rollercoaster that is to come. I hope that is a normal, and that you take it with a grain of salt for where we currently are in this ordeal. We know that the Kingdom is paramount, and that despite our feelings, the Spirit works. We praise God for this.
God has done amazing things for Brock’s health. Please CONTINUE to pray that that CONTINUES to happen, and that the next people Brock “astonishes” will be all of the therapists that will be working with him in the years to come.
Speaking of the Kingdom, we would like to ask each of you to consider doing a SMALL thing which would make a HUGE IMPACT for an organization that is dear to our hearts (if you happen to have time in the next 2.5 hours- by 5pm this evening). When Taryn and I were in Lubbock, while I was working for Broadway Church of Christ’s campus ministry, Christ in Action, we got to know Chad and Jaime Wheeler who are the ministers of Carpenter’s Church which is supported by Broadway. Carpenter’s Church changes lives for the homeless population of Lubbock, TX- and being ministered by Chad and Jaime shows them (and us all!!) a glimpse of what it means for your life to be utterly CONSUMED by the Kingdom of God. Chad and Jaime live out the sermon on the Mount with humility and passion. If they are in first place (if everyone who has visited this page votes for them- they’ll be in first) then they’ll receive $10,000 to continue the amazing works that they do for the folks they work with. Go this link and find them fifth from the top on the right hand column and follow the instructions to vote for them. http://www.citybankonline.com/community-rewards/community-rewards.html
Of course, if you feel called to vote for any of the other organizations, I’m sure they’re all considerably deserving.
Also, should any of you be going through a rough time of darkness in your own life right now or know of someone, I’d encourage you to check out this sermon by Wes Crawford, my church history and homiletics professor from our LCU days who is currently preaching at the Glenwood Church of Christ in Tyler, TX. May it be a blessing to you or someone you know: http://www.wes-crawford.com/2013/12/a-season-of-advent-from-darkness-to.html
May Your Kingdom come and Your Will be done, on earth as it is in heaven.
Love you all~ Brad and Taryn
Brad Morrow , Dec 15th 2013 at 10:21 pm
God is good!
~Brad and Taryn Morrow
Brad Morrow , Dec 15th 2013 at 3:21 pm
When we get to about 6pm, it will have been about a week to the hour that we noticed the original symptoms of an illness I’ve only heard a couple times in my lifetime. In this first week, we’ve experienced incredible outpourings of love and support for our family. I know that thousands upon thousands of prayers have gone up and continue to intercede for us. Let me give you an update on those prayers since the original diagnosis:
On Wednesday he started having clinical seizures which made them start seizing medication and by Thursday he was having seizures every 20 minutes even on two seizing meds. We asked you for prayers that these seizures would slow down… AND THE NEXT DAY THEY STOPPED! Prayer works.
On Thursday they tried to do a spinal tap which failed multiple times. We asked for prayers Thursday that they would eventually get a spinal tap to work, and on Friday they decided they DON’T EVEN NEED TO TRY! Prayer works.
The neurologists said he was probably still having sub-clinical seizures so they would need to do an EEG on Saturday (12/14) to look at his brain activity. They said the best case scenario would be that he was having less sub-clinical seizures. We asked you to pray with us that he was having less, and the EEG yesterday showed HE HAD ZERO! Prayer works.
Yesterday you helped us pray that he would start breathing well enough on his own for them to talk about weaning him off the breathing tube sometime this week. After these prayers, THEY SAID HE WAS WELL ENOUGH TO TAKE IT OUT TODAY! And they did! He is in mommy’s arms as I type this message. Prayer works.
The doctors have been proven wrong over and over again, saying they’re “astonished” at some of his results. The neurologists have said that the acute symptoms that they are treating are responding very well, but that doesn’t denote how well the prognosis for long-term development will be as he tries to achieve typical infant/childhood benchmarks/milestones. We are asking that you continue kneeling with your prayer groups on his behalf, that he begins meeting the milestones of infancy as close to a normal timeline as possible. Pray that we get connected to just the right therapists to help him in just the way that is needed. Pray that his time left in the Hospital (apparently another 3-4 weeks) is uneventful. Pray that God continues to “astonish” these doctors and all who witness.
"Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen." (Ephesians 3:20-21)
Grace and Peace~
Brad and Taryn Morrow
Brad Morrow , Dec 13th 2013 at 6:06 pm
Cause when
I'm weak, You make me strong
When I'm blind, You shine Your light on me
Cause I'll never get by living on my own ability
…
So I'll stand on Your truth, and I'll fight with Your strength
Until You bring the victory, by the power of Christ in me.
-Casting Crowns
We braced ourselves today. Radiology came to take him to his next MRI/MRV so they could look and see how much worse his brain damage has gotten because of the inflammation and infection. The small stroke areas he had in addition to the meninges caused some initial clots (as already mentioned) which can cause cascading issues. For the MRV they injected a dye to trace the blood vessels in the brain to see if blood is getting around the clots. Apparently, this imaging test is the very upper limits of modern technology and physics. Pretty interested how they do that. Anyway… The neurology doctors came in before they had even looked at the images, and started looking at them on the computer. Taryn was on the lower floors visiting with a friend and the Dr. said “how about we call mom and get her up here.”
Fast forward: At the end of the conversation the boss neurologist explained that he was honestly trying to finish work early so he could get out the door before Brock’s imaging results came in so that he wouldn’t have to come in and explain the difficult news that his brain damage and clot damage has gotten worse.
Rewind: We waited in silence for a while during the time the neurologists examined and compared the images from today’s MRI/V and the one from Tuesday. Taryn came in and he began showing us the results. He went through the radiologists’ report, which is basically nuclear physics mixed with some form of Martian. He said that with cases as bad as Brock’s, the brain experiences more and more damage as the infection goes on, inflaming further and deeper areas of the brain; reiterating that Group B Strep Meningitis is his least favorite condition because of how aggressive it is.
Then he said, “Given all of that, I’m actually pretty ASTONISHED.” Explaining that he would have placed money down on seeing more damage and more clots, and was surprised to find that the MRI results are basically the same (i.e.- the damage has not really gotten worse, like he expected.)
In a world where a good “victory” is something like winning the lottery or getting a promotion or an A on an exam, I am perfectly happy with news like “things aren’t any worse than they were before.” That’s currently the standard of what we consider “good news.”
So we rejoice in the good news that there is no additional bad news. Thank the Father with us that this MRI revealed no additional damage, and pray that the MRI that they’ll do in two weeks or so (unless they feel like they need one sooner due to worsening physical behavior/symptoms) reveals the same or even some sort of miraculous reversal.
They did show us that, as expected with meningitis, he’ll need hearing tests at some point because of the evidence of inflation around the inner-ear tissues.
The committee of doctors working with him decided they DIDN’T want to wait “several more days” to retry the spinal tap, and decided that they would attempt it again today. The Infectious Disease doctors are the ones who are most vocal about the desire to see his spinal fluid. After some conversations with the neurological doctors, they decided that they would give US the choice to put it off another day. There seems to be some argument among the doctors about the spinal tap: the ones who have TRIED the puncture insist they are hitting the right spot but that there is no fluid there, whereas the ones who have NOT tried insist that the previous doctors are simply not putting the needle in the right spot. We opted to keep today on a positive note with the good news that there’s no additional damage, and not potentially end the day with disappointed doctors and parents who still can’t see the spinal fluid (and confirm for a fact that the antibiotics are doing their job killing the bacteria). The attending physician (boss lady) will try the LP tomorrow.
“To reach out with Your hands
To learn through Your eyes
To love with the love of a savior
To feel with Your heart
And to think with Your mind
I'd give my last breath for Your glory.” – Casting Crowns
I would give MY last breath to never see Brock’s last breath. Oh the LOVE of The Father to send His Son! And the SUFFERING of The Father to witness his death! I begin to understand more and more every hour.
Father, may Brock’s cup pass from him. I don’t think I’m ready to say the next part. My HEAD gets it, but as many “you’re so strong” comments as we’ve received, that is not yet where our HEARTS are. As I noticed a good friend of mine is praying, I also pray for faithfulness through this endeavor. Not only for me, but for all. We brace ourselves for the likelihood of bad news, and we brace ourselves for the hopeful arrival good news; and we yearn for the day...
The infant will play near the cobra’s den,
and the young child will put its hand into the viper’s
nest.
They will neither harm nor destroy
on all my holy mountain,
for the earth will be filled with the knowledge of the Lord
as the waters cover the sea. (Isaiah 11)
Grace and Peace~
Brad and Taryn
www.GrapevineChurch.com
Taryn finally gets approval to hold her angel
Brad Morrow , Dec 12th 2013 at 11:06 pm
For a brief moment, EVERYTHING is right with the world!!
Brad Morrow , Dec 12th 2013 at 8:34 pm
HE OPENED HIS EYES TODAY! They’re as beautiful as I remember (5 days ago seems
like an ETERNITY!) More on this at the end…
As I type this, my loving congregation at Grapevine church of Christ (www.GrapevineChurch.com) is holding a prayer vigil for Brock and my family. Knowing that there is a an entire group of people who have taken time to meet together and pray as a community makes me so proud to consider myself a part of that family. And knowing that people are constantly praying around the clock gives me strength and hope. As a side note, the link above now has a link to donate online, which also has links to Facebook this site. Sub-side-note: I'm taking down the CaringBridge site soon because of the donation confusion.
First of all, Brock’s night nurse is a beast! (in a very good sense). She won’t be back on rotation until another four days, but she definitely deserves a shout-out. I wish we could clone her for every rotation. (Nothing against the other nurses, she has just seemed exceptionally on top of everything, nonstop). I hope she gets good rest this weekend.
Here’s today’s update on Brock’s… “progress?” “Regress?”: Overnight he had 2-3 clinical seizures. They took the EEG off this morning (machine that monitors non-clinical seizures in brain activity). The glue from the leads is pretty rough on his skin, and they didn’t want him to develop sores from them. Besides, they decided that they’re only going to focus on the clinical (visible) seizures that he is having, and work on getting those under control. They’ll tape the EEG back on Saturday for an hour and monitor it closely. He has been having clinical seizures every 20 minutes or so. They seem to come in clusters: 2 or 3 within 5-10 minutes, none for 15-20 minutes, then another cluster. The neurologists have decided to put him on a third seizure medication called TOPAMAX (topiramate). I think it’s actually an oral medication? They’ll be starting that regimen at 9:00pm (12/12/13). The neurologists are getting more and more concerned at the consistency of the seizures; seizures being a sign of damage. They were pretty certain that after they put him on the initial dose, that they’ll be increasing it before too long. They also put in an order for another MRI (tissue) and MRV (blood vessels) for tomorrow. They said the BEST case scenario would be simply that they clots in his brain are not worse or more numerous, and that damage to brain tissue has not increased. I’ll update everyone with those results tomorrow if we happen to get results before the neurologists leave on Saturday.
They also insisted on another spinal tap to see what the CSF (cerebral spinal fluid) looks like and take numbers on csf glucose and white blood cell count, and obviously see where the bacteria levels are. Depending on what the cultures look like from the fluid could potentially alter treatment; I didn’t ask how, exactly. Unfortunately, the Fellow Physician who attempted today had the same difficulty the two doctors yesterday did, and could not draw any fluid. They were both very confident that they were hitting the correct spot, and guessed that because of the clots in his brain and so much inflammation of tissue in other areas, the CSF can’t get down through those constricted spaces to where the lumbar puncture is done. Of course, you can’t really go up the vertebrae (higher) to a different spot in attempt to just get past the inflamed areas, because you risk nerve damage to the brain stem which travels down through the vertebrae for a ways. They’re going to try again in several DAYS (ugh) to give his body time to potentially become less swollen and let them inflammation from the muscles around those vertebrae wear off.
The difficult news to hear from the neurologists was that if they can’t ultimately get to the CSF fluid to determine what the bacteria levels are doing, then Brock is looking at an ADDITIONAL 2 weeks in the hospital on antibiotics, because they’d rather be safe than sorry. That would put the total hospital time around 5 weeks or more. We could really go without that.
NOW, for the sort of COOL thing: WE’VE SEEN HIM OPEN HIS BEAUTIFUL EYES! Because of the fluid buildup around his body that makes him so puffy, he hasn’t been able to open his eyes. With the puffiness going down slightly, his eyes have opened a few times today! It’s a beautiful sight, and it makes me melt inside. He is not tracking anything with his eyes (following faces or light), he just kind of stares straight out or into some corner, before he yawns and decides to close them again. I like to pretend he is trying to find my face and look at his daddy. Perhaps it’s better he not look and see my sadness, though. I don’t know. It almost makes it HARDER on me that his eyes are open, if you know what I mean. They say that windows are the windows into the soul. Why? I have no idea. But I think that in today’s culture (uh-oh, youth minister coming out) personal face-to-face contact is getting more and more difficult as our brains are being conditioned exceedingly every day to pay more attention to the lights of a computer or tablet screen than the lights of another human’s eyes. We noticed this in an exercise between all the ministers and elders when we “coupled up” and looked each other straight in the eyes for the duration of a prayer. We all found it to be an incredibly difficult practice. Anyway, there’s something… I don’t know… HUMAN… ALIVE… about eyes. Something that shows vulnerability. I imagine this is why it’s common practice to CLOSE someone’s eyes before a funeral or viewing: because you can almost be TRICKED into believing there’s still some consciousness existing there when obviously there’s not. So when Brock has his eyes open, it’s as if he is showing his vulnerability… calling out (if he could) for more help, to be rescued from what is plaguing him. So on one hand it is so wonderful to see his eyes again, ad on the other hand, it is heart-wrenching. His eyes are powerful, they pierce me to the core. They give me great hope, and also bring up such pain- more than Superman's Laser-Beams! The little guy has gotten in a couple yawns today- super adorable. He is moving a lot more as his body gets more and more rid of the paralysis agents from the previous MRI and the other sedation medications that keep him fairly still. Of course, he has another MRI tomorrow that they’ll use paralysis for again so he’ll be groggy again for a while afterward.
We continue to be reminded of God’s goodness through His children. Through the prayers of a friend, the bestowment of physical blessings of food or gift cards, the hugs of new and old friends, and the hard work of many on our behalf, we see the Father’s own eyes clearly, and see that they are gazing intently upon us with concern, love, and care- “as a hen longs to gather her chicks under her wings.” We love you.
Grace and Peace for you
Brad and Taryn Morrow
Brad Morrow , Dec 12th 2013 at 3:27 pm
Things change. My entire life I have welcomed change, it is my personality. It’s part of life. It’s much nicer when you have some manner of choice over such matters, though. But things change.
Perspective. It can change very slowly over time, or it can change immediately like an earthquake. For me, it’s always been one of those things that changes very slowly. For instance, my perspective on many theological issues changed very gradually throughout my life (and will continue to, I’m sure) with education, conversations, both positive and negative experiences, etc. I have never experienced anything in my life that caused me to change my perspective abruptly. I can no longer claim that.
Our little boy, Brock Jacob Morrow, was born November 26, full term at 8lb 5oz. His two older sisters (Brynlee, 3.5 and Brielle, 19months) were also born 8+ pounds and incredibly healthy… but they were totally bald (in a beautiful way, of course)! Brock was born with a full head of brown hair! Brynlee and Brielle were in love with him before he was born, but our family’s love for our only son is, as anyone’s would be, mountainous! Even sweet little Brielle, though she speaks only a few words, and is usually very rough with toys (being 1.5), would go up to Brock in his little bassinet and gently rub his tummy saying “sshhhh…..ssshhhh….sshhhh.” Brynlee is always ready to lend a helping hand. Such angels. Our church family, Grapevine church of Christ, threw Taryn an incredible baby shower that left him wanting for nothing, and had a superhero flare about it! Our first 12 days with Brock after he was born were completely magical. Life couldn’t be more perfect. Our house was filled with hugs, kisses, laughter, warm fires, s’mores, and cuddles in the rocking chair. All through Thanksgiving, we were all overwhelmingly THANKFUL for our perfect birth, and our perfect baby boy. His middle-name-sake, Jacob, is my favorite Bible character. Such depth and meaning to His life! “Israel” he was renamed, after his mysterious, inexplicable night of “wrestling” with God. “God Strives”- Israel means. Jacob was blessed and a new identity was given to him because he REFUSED TO LET GO OF GOD. (Read this story at the end of Genesis 32.)
Then the earthquake hit. Things changed, very quickly. Our current life is filled with wires, sounds of beeping machines, tubes, papers to sign, and an intense amount of worry and heartache. The five of us came home Sunday evening, December 8th, after helping our church family wrap gifts for the Grapevine Santa Cops. We noticed his color was not as pink as normal, so we took his temperature to find that it was incredibly high, high enough to consider the ER. After weighing the option of going to the ER or waiting to see a pediatrician and pay simply a co-pay in the morning, we decided the ER was needed. Taryn took Brock to the Grapevine ER and I stayed home with the girls asleep in bed praying and waiting for an update. Within an hour, the ER Doctors suggested transferring him immediately to a Children’s Hospital. I suggested that Children’s Medical Center in Dallas was the best option because if we were dealing with anything having to do with his kidneys, which we knew before he was born were larger than normal, then Dr. Linda Baker, his pediatric urologist who works there, could have quick access to him. He was put on antibiotics before being transferred, and we walked straight into a room at CMC. (The girls were being watched at our house as they slept by our sweet friend, Hannah Holt). The CMC doctors felt like they needed to do a spinal tap ASAP, but didn’t feel comfortable doing it until his heart rate dropped down. It was hovering between 200 and 240… way too high. His breaths were also extremely fast. They brought in the Medical Emergency Team (doctors from several different fields) to determine how to proceed. The ICU doctor said he needed to go up to ICU, feeling like it was a high probability that he had meningitis of some kind. He was given morphine to see if that helped his body calm down… it didn’t do much. He was transferred up to ICU, put on a sedative, and his heart rate went down just enough to do a spinal tap (or “lumbar puncture.”) At the time they were still thinking there was a greater possibility of a UTI than anything else, but seeing the spinal fluid slightly cloudy made them lean heavily towards meningitis. The cultures came back positive for Group B Strep Meningitis. It’s a bacterial meningitis with an incredibly aggressive attack on the fluid surrounding the brain. This was a confusing diagnosis to hear, since Taryn’s Group B Strep test at 36 weeks came back negative, and he was only in the birth canal for 5-10 minutes (Taryn pushed him out through a single mighty push during the second or third contraction after her water broke)- which makes it exceedingly unlikely that he contracted it during birth. In addition, a newborn would exhibit symptoms much earlier if that were the case. It is highly more likely that he got the bacteria afterward, and that’s why he didn’t exhibit any symptoms until 12 days after birth. This bacteria lives in many places, on a lot of people’s skin, it’s a very prevalent bacteria, that he probably got somewhere where it easily entered through his nose or mouth, and got into his system then easily penetrated his incredibly thin, newborn, blood/brain barrier.
So the neurologist at CMC put in an order on Monday for an MRI to see what kind of hit his brain has taken because of the bacteria that has been feeding on the glucose in the brain/spinal fluid which his brain needs to use in order to function properly. His MRI was done on Tuesday and the neurologists (after ensuring there is really nothing we could have altered about his birth plan or pre-birth care that would have changed our current situation) filled us in late Tuesday afternoon what the results were. This was a very difficult consultation to bear. They explained how bad bacterial meningitis is on the brain (to prepare us, I suppose) then showed us the images. Most of the outside of his brain (on both sides) is damaged or at least inflamed (bilateral damage). There is also damage and inflammation of the brain cells in the cerebellum. In addition, a significant area on one side at the back of the brain that relates typically to vision is obviously irregular. They said to expect seizures to happen, but hope that they don’t. Seizures are to be expected with the amount of damage his brain has already sustained. Seizures can be dangerous to the brain if they last a prolonged amount of time (they would like them to resolve themselves as quickly as possible, but will intervene with medication (ATIVAR sp?) if they feel like a seizure might not resolve itself within 10-15 minutes. Seizures aren’t a CAUSE of brain damage, but more of an INDICATOR and RESULT of brain damage.
While Taryn was holding him in her arms in the rocking chair, he began having a seizure. I would prefer not to type out details of what that is like, I’ll spare both myself and you. Many reading this may have seen such things; it takes an awesome toll on you emotionally to see a 2 week old going through one, and the toll is intense when the two week old is your own little boy who is supposed to be a little superhero who grows up chasing his sisters and running around the house with a tiny towel around his shoulders as his cape.
They stopped that seizure with the ATIVAN, and began a constant drip of anti-seizing medication called PHENOBARBITAL. They also put nodules all over his head so an EEG could monitor SUB-CLINICAL seizures (seizures that are invisible to the naked eye; no physical changes involved). After monitoring those graphs, the epileptologists reading them determined he is having both clinical and sub-clinical seizures. They started him on an ADDITIONAL anti-seizing medication called KEPPRA (sp?). They kept upping the dose to the maximum amount they are comfortable doing so for his age/weight. As of late Wednesday he was still having both kinds of seizures, with clinical seizures happening almost every hour and one or two subclinical seizures happening between each of those. This is concerning for the neurologists, and obviously for us as well. They are CURRENTLY able to stop the seizures from going too long with the ATIVAR, but really hope they don’t get to a point where they CAN’T stop them with medication.
The neurologists said to expect major setbacks in development and to start preparing ourselves for essentially every kind of therapy in existence even before discharge. Also, Taryn and I will go through CPR training, etc. They said to expect to meet “whatever your out of pocket max is on your insurance plan for this year, and look into a top-notch plan for next year as you’ll meet your limit again very quickly next year.”
Tuesday’s (12/10/13) MRI also revealed, as mentioned, that damage is on both sides, which makes recovery VERY DIFFICULT. Newborn brains have great plasticity and can make new connections quickly when a part of the brain is having difficulty. But when there is BILATERAL (both sides) damage, this is far less likely to happen (perhaps, impossible), making brain recovery very hard. There’s no way to tell from the images how much of the affected cells are DEAD (there are some dead cells in every affected area for sure) and how much of those areas are simply INFLAMED, which means it is starved for oxygen, but not yet dead, and could POTENTIALLY recover. What makes THAT also unlikely is the fact that he has clots in a couple key areas of the brain’s blood vessels that allow used blood to drain to make room for oxygenated cells to get to the rest of the brain cells that desperately need it. It’s like asking someone to who just finished running a marathon, to immediately run ANOTHER marathon with no break or nutrients in between. This is what can lead inflamed brain cells to deteriorate and die, which then causes ITS neighbors to become inflamed and potentially begin a cascading domino effect.
The neurologists want to do another MRI soon to see what changes have happened as far as brain damage or clots (ideally it’s just “the same” and not “getting worse”). However, they also want to keep looking at his seizures that keep happening (more often at nighttime) by keeping the EEG nodes on his head, which can’t go through the MRI machine.
All the doctors (main attending doctor, neurologists, Infectious Disease doctors, etc) also really want to get more spinal fluid from another spinal tap to see what progress the antibiotics are having on the bacteria, and also see what the glucose level in the brain fluid is. Glucose is the energy of the brain cells and low glucose counts are a very bad thing. We want to see high glucose and low (or no) bacteria. So they tried to do another spinal tap on Wednesday evening (12/11), but after two different doctors each tried 4+ times with multiple needles, they had no luck drawing any spinal fluid. This REALLY stinks because doing labs on his current spinal fluid levels could potentially change course of treatment, which we need to happen if it will help at all. They will try again tomorrow. Difficulty could be due to how swollen he is all over his body because of the amount of fluids they are putting in him (for hydration and nutrients, obviously, but also to help keep blood pressure medication up). Oh, and he has been on BP medication twice, and as of late night 12/11/13, was still on it. He was able to get off of it for a while, but they felt it was appropriate to put him back on after a while. If his blood pressure gets too low then that also becomes a major issue (Priority one, actually) because too low BP means organs aren’t getting the amount of new blood they need to survive, and he could go into organ failure, otherwise.
Perspective. Last week, money and health insurance was of great concern for us since open enrollment ends on 12/15/13 for the 2014 year. This week, every conversation about how much this is going to cost us personally and our insurance just seems so trivial when we’re looking at a little superhero who is attached to 2 tubes, 3 IVs, and about 18 wires. Honestly, we really don’t care if we end up homeless and in a cardboard box for the rest of our lives, as long as Brock Jacob Morrow gets to come be in that box with us for as many years as we are. Perspective. Being a minister, the church is a source of hope in the Kingdom To Come and (surprise surprise) often a great source of stress. Ask any minister or elder; this occupation follows you home, it can’t be left in an office or explained on a time-sheet. At this point in our lives though, we would be in dust and ashes without our church family. I now understand why even atheists are beginning to start their own “churches”. I simply don’t want to think about where we would be without the spiritual support of our elders and church family at Grapevine. In addition, my childhood home church where my parents attend in Leander continues to send love and prayers our way. Our previous congregation in Baytown, Lakewood church of Christ, continues to show support and love through our journey. How can anyone walk down this road without the body of Christ reaching out with the hands and feet of Jesus Christ when we need it most? The Church is truly the masterpiece of the Creator. It is nothing but beautiful. It is nothing short of miraculous. I don’t care what it looks like from the outside (or inside), the Church is the Bride of Christ, and He makes it beautiful as he prepares to present Her to Himself. This is profoundly obvious to Taryn and I right now.
With that said, the pain and brokenness of the world is ever before our eyes. All we can pray for is that the Messiah come soon and ultimately and finally do away with pride, do away with every injustice of evil, do away with Sin, conquer death completely, and send Bacterial Meningitis into the depths of the Abyss where it came from and where it belongs.
We are surviving off of your prayers. The adrenaline is gone. Our own physical and emotional strength is exhausted. We get through the day on Autopilot. Every once in a while I read a post of someone praying for us, or someone offering to assist in some way, and for a brief moment the gravity and pain of the situation also shows its grief from the top layer to my inmost being. This is a good thing. It reminds me that, as we are made in the Imago Dei (image of God), God is deeply hurt and suffering with us in this time. Only, he is strong enough to carry us through it regardless of outcomes. May we depend on him. We are not “His strongest soldiers, bearing this burden as a hiker strolls along carrying the weight of his pack- we are crawling, and sometimes (no… often) feel like we cannot move another knee across the gravel. Nevertheless, change continues to happen, and time goes on, dragging us along with it. We are staying in the hotel that our INCREDIBLE elders have furnished for us at night, not because we want to leave Brock for a single second. But the Doctors demanded we get away to replenish energy as, once he gets out of the ICU (crossing fingers) he will no longer have the one on one nurses’ attention and will need extra monitoring- we need to try to conserve energy for that phase in the process, as much as it goes against every fiber within our being to sit on the 4 foot wide couch in his room. It just stinks. We are hurt. I am mad at the injustice and brokenness that inhabits this world, lingering on until the completion and renewal of all creation. Lord Jesus, come soon, not only for my son’s sake, but for the sake of all.
I can’t begin to say thank you enough to every individual that has already held us in their arms from near and from far. Those we know well, and those who are strangers, you are beautiful to us, and for that, the Creator who knit you together is all the more beautiful as well. Immanuel is difficult to feel in difficult times, but we are reminded of His abiding presence through your affection. We ask you help us pray that our little boy do his very best to live up to his namesake and REFUSE TO LET GO!!! We need him to hang on, as we know God is refusing to let go of us, though it’s impossible to see how He is doing so. We are barely hanging on, but pray that as we refuse to let go of God as Jacob did, that a blessing may come forth, even if that means we are crippled forever. We know the blessing that is hidden at this time may be revealed in a way that furthers the Kingdom, though I dread what that means, just as Jesus dreaded in His humanity what awaited Him as he prayed the Will of God triumph over his own emotions. This brings new light to God “loving the world that he gave His only Son.” Wow… unimaginable. God is great. When I am nothing, God is great. Is there anger and questioning in my soul? Certainly. Perhaps in time, though, our hearts will follow the divine truth that our heads are convinced of: God is good.
Things change. God does not.
Sorry this was so long. I must try to sleep now. We love you with an unending love and gratitude.
Grace and Peace cover you, and beg it covers us too~
Brad and Taryn Morrow
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Brad Morrow , Dec 12th 2013 at 3:05 pm
Super Brock needs rescuing