It’s so hard to update Reagan’s status within a timely manner b/c so many things happen on a daily basis and we have to concentrate on absorbing the info and processing it…we’ve barely been able to discuss how all of this will look once we get home. So please forgive the re-cap from earlier in the week, but I know the updates have helped everyone to process along with us. And we are SO thankful for the outpouring of support.
On Monday Rob and I had a meeting scheduled with Reagan’s doctors. We sat in a conference room with a Neurologist, Geneticist, two Internist Dr.’s with Arnold Palmer and a Social Worker. They told us to prepare our questions, and we did…three pages worth.
I would have never imagined we’d be asking questions like these in regards to our daughter:
- Are there stem cell treatments available to regenerate the brain? (no)
- Will she be able to walk and talk? (unknown)
- Will she be able to learn her ABC’s? (she should be able to learn, but we will have to wait and see)
- Could the brain damage spread? (you can’t stop damage from happening, but it doesn’t spread per-say)
- Could a seizure cause more damage? Could her GA-1 cause more damage? (yes)
- Do you have any success stories? (everyone is different…we were provided with three or so positive stories)
- Has any research been done in cases like this? (no)
- Are there any clinical trials? (no)
- What if she has a seizure in the middle of the night? (the neurologist said most parents don’t sleep well at night we could get a seizure dog if we wanted)
- How intensive does therapy look? (Reagan will tell us what she can handle)
- How much will she regain? (unknown)
Rob and I have talked over and over about how the doctors know absolutely nothing about the brain…kids are walking and talking with MRIs that show they shouldn’t be doing any of those things. And then some kids aren’t doing much when their MRIs show minimal damage. It’s like there’s no rhyme or reason…the brain is just so complex, only God knows what’s going on inside of Reagan. We have so many questions and few answers. Our circumstances require absolute trust and reliance on God to fix Reagan. They require God to show up and be the Great Physician for Reagan. This happening to Reagan requires Rob and I to let go…we can not fix her, we can not fix our sadness, we can not fix anything…we HAVE to rely on God in order to get through.
Even though Monday started out with an intense board meeting with everyone following Reagan’s case, it progressed into the best day in the hospital thus far…I mentioned in a previous post that Reagan saw Bauer. She smiled, laughed a little and expressed some beautiful emotions as a result of seeing Bauer. And she’s continued to improve throughout the week…
The one thing we had a tough time getting under control was Reagan throwing up during every feeding while in the hospital for a week. The GI doctors wanted to do a PH test which meant another tube down her nose. The purpose of the test was to see if she had any reflux or if she was aspirating. The PH tube was put in on Monday evening and the Dr.’s wanted the test to last 24 hours, during which we were to write down every single thing she did. If she sneezed, if she fussed, what time the fussing started, when it stopped, if she burped, if she threw up, when she was sleeping, when she ate, when medications were administered. They wanted us to make all these notes in order to correlate our notes with what they were looking for on the test and we gave them three pages of stuff. The Dr. was impressed with how many notes we had taken and he told me, “You’re going to make my job hell with all these notes,” and I told him, “Good! What do you think we’ve been going through.” I’m happy to say my spiciness has only increased by being in the hospital…I may be small in stature, but I’m a big mamma bear and the Dr.’s began to see that they were going to need to defend their position and answer all of our questions to our satisfaction before they left our room.
With two tubes in Reagan’s nose, she was so uncomfortable that she barely slept…as of 12:30 a.m. on Tuesday morning, I had to go to the Ronald McDonald House (RHM) so that I could get some sleep…Rob came shortly after.
When we came back on Tuesday around 7 a.m., the nurse said that Reagan had a rough night sleeping. When the Dr. made his rounds he said, “I heard she had an Ok night…” and I immediately corrected him and said, “Her night sucked and so would yours if you had two tubes in your nose…”
The nurse said that during the night Reagan was actually calling for us, which is HUGE. She was saying “Ma” and “Da” and “A Ba” (Bauer). She continued to say Mom and Ma on Tuesday when she was upset. The speech/occupational therapists that came by said speech is the hardest thing to get back so they were very pleased with her progress. Literally everything Reagan does is a miracle.
Two of our Nemours team members came by on Tuesday and I told them about our walk around the lake and how even though we were so angry, that for that brief moment I felt near to God…being among the lowliest. They said that’s where miracles are performed…they are performed at the hospital and they are performed in dark times and places…that’s where light can shine the brightest, and I pray it continues to shine so bright…I pray that Reagan’s life has an impact. Rob and I have discussed that prior to Sunday, we felt like Reagan would never reach her full potential…however, our tune has changed as we’ve begun to accept the new call upon our lives. Maybe, just maybe…THIS is how Reagan will reach her fullest potential and reach the most people. We just pray that Reagan’s life has an impact on people and that God shines bright through her and us.
On Tuesday, even though Reagan was making improvements, I personally was not having a good day. We brought Bauer for about four hours and her reaction wasn’t the same. Bauer laid by her crib when she was in there sleeping (which wasn’t much) and he laid at the foot of the chair when we were holding her.
Reagan was so uncomfortable with the two things down her nose/throat and was very fussy. Rob and I had enough of watching her be be upset b/c of the tubes and we told the Dr. we wanted the PH tube out. The nurse let the Dr. know our wishes and he said he would be in our room within an hour. At an hour, fifteen minute mark, the Dr. wasn’t there and I told the nurse I would be coming out of our room every ten minutes to see if she heard from the Dr. and I’d be asking her to page the Dr. every 30 minutes until he arrived. That went on for about an hour and a half and he was finally in our room. The Dr. reiterated that it was a 24 hour study and wanted to keep the PH tube in her nose for the full amount of time, but we told him: “there’s nothing new you’ll learn in the next four hours that the last 20 haven’t told you. Take it out now.” So they took the tube out and she was much happier. The findings of the test were that she did have a little reflux but not much, and that was the main source of her discomfort. Medicine will be able to control the reflux and b/c of the PH test results being received Tuesday, her surgery to have a G-tube placed was able to happen on Wednesday.
Sigh…sometimes I just have to take a big huge deep breath to absorb everything that is coming out of my mouth. It takes a long time to digest what the Dr.’s say.
On the neurological front, the Neurologist that she will be seeing works with our Genetics Dr. regularly. They have a lot of the same patients so the communication btw the two is daily. The Neurologist also has experience with metabolic patients who have neurological issues. B/c that is so rare, we are blessed that he’s here in Orlando and that he already works closely with our genetics Dr.
In the next few weeks the neurologist wants to try a new medication (Topamax) to help with some of Reagan’s involuntary movements. While she is on a medication to control the movements, they still happen and I can only imagine how frustrating it is for her to want to do a specific thing, and not have control over it. You can see her mind working…the connections just aren’t clear. Prior to trying Topamax, the neurologist wants to exhaust the current medication for her movement disorder before trying a new one as to not add another drug right away.
The neurologist mentioned that Topamax has worked in three patients to either completely control involuntary movements, or it’s worked to control up to 90% of involuntary movements. Not sure if you noticed the number I threw out was THREE. As in the only literature that’s been published for this drug working in movement disorders has been in three out of three people in the entire country, none of them children…none of them metabolic. What we are dealing with in regards to Reagan is as rare as rare gets. And the courage and strength required to deal with this…it can only come from God. There’s no human strength that can handle what we are dealing with. Please don’t let this blog or us communicating all of this translate into our strength to handle this on our own…we are broken, but we have hope. And our hope grows every day with Reagan’s progress.
Reagan had her G-tube put in on Wednesday and she did really well with the surgery. It was so hard watching her be wheeled away on a stretcher while we were escorted to the waiting room.
The surgery went really well…she came out of anesthesia fine and has tolerated being fed…no throw up, yay! We will take any victory we can get and Reagan has continued to tolerate all of her feedings.
Bauer came on Thursday and Reagan seemed to enjoy his company. Not the huge smiles or little laugh that we got on Monday, but she seemed more at ease…familiarity is what she needs, and Bauer gives that to her in a way that only he can. I can’t tell you how many people have commented on how fantastic our dog is…and other patients and parents asked if Bauer could go in there room, which we declined for obvious reasons.
We received a delivery to our hospital room for things we will need at home such as Reagan’s feeding pump, feeding bags and a backpack to store it all in. We also got an IV pole that will go in her room. This is why we went home to grieve earlier in the week…that’s how her room will change and we knew it was coming. Her room will now have an IV pole. I don’t know what other things will fill our house as the days, weeks, months and years go on, but our first shipment of medical equipment arrived and it likely won’t be the last. My friend Sami said we need to decorate the IV pole…I have no idea how to do that, but I’m sure we’ll figure it out.
Friday was a pretty good day. Reagan actually made really great progress and the Dr.’s, therapists and visitors we had said she just looked awesome. REAGAN ATE PEAS! Peas are her favorite food and we gave her peas by mouth and she ate half the container. It was a little difficult for her at times…her mouth isn’t as organized as it was before, but it can come back, we can work on it…the lady said feeding is harder to get back than physical therapy…same with talking, and Reagan has said words, she’s laughed, and now she’s eaten PEAS!
Reagan is such an amazing girl, and her strength and will to succeed is evident in everything she does. I hope and pray that she can overcome all of this adversity. I pray her brain can figure out a way to re-wire itself so she can regain all of the skills she had. In just a weeks time, she’s come SO far. She smiles, she’s laughed a few times, she wants to play with her books and she’s turned the pages, she’s self soothing herself at night when she cries, she’s starting to make more sounds, her head is regaining strength…and we have been sitting in a hospital for 11 days with hardly any therapy for her to improve. The road is long…we will have to start with tummy time again, and work really hard to help her regain what she’s lost. Reagan is counting on us to help her and we are going to do everything we can for her. We can do it…we will do it, but it will not be easy.
After 12 total days in the hospital and receiving the most devastating news of our life, we came home. We are stumbling through being at home with a child that needs a lot more help than before…I’ve written a new post about our trip home. You can read it here.