Q & A: The Medical Edition!
You guys had some awesome questions! I answered every one of them, but it's too long to put into one post. I have them all answered in a Word document and will cut and paste them into several different posts over the next few days. Plus, this way I can string you along as you eagerly await the next post! :) This first one is all about Abby's medical care. If you have other questions after reading these, send them my way and I'll try my best to answer them!
Have you had genetic testing?
Yes! We’ve had lots! I had an amnio done while I was in the hospital during one of my reductions (might as well put all that fluid to good use!). It came back fine. They tested Abby’s blood shortly after birth for the same things and it was also clear. They have sent more blood to a special lab in Atlanta that does extensive testing. This test will show the presence of CCMS and other very rare syndromes. When we get results back from that, they will send more blood away to test for a specific syndrome that could be attached to the CCMS called Carbohydrate Deficient Glycoprotein Syndrome. It’s an equally rare syndrome, if not more-so! Some studies I’ve read don’t even list the specific form they are considering for Abby because it is so rare—like maybe one or two cases. That’s about as much as I understand about it. After that, I get a bit blurry-eyed at the explanation of what is done.
Do you know what caused CCMS?
Ummmm… I think I need to invite our geneticist, Dr. Greene, to be a guest blogger on here. It’s some mutation of some gene and it can be passed down from parent to child. (Of course, Matt and I do not have CCMS, so this was not the case for us.) Thankfully, it is nothing that I did or didn’t do during my pregnancy. If Abby’s tests show that she has Carbohydrate Deficient Glycoprotein Syndrome, that will be our answer to the cause for the CCMS. That is about as specific as I can be. I do know that Boston Children’s Hospital is doing a research study to try to understand exactly why this occurs and which gene it is. I’m sure there is a much better explanation. Let’s just say I didn’t do too well on the genetics unit in 9th grade biology.
What is Abby’s prognosis?
If you’ve done any research at all on CCMS, you know that the odds aren’t great. However, Abby is proving every day that she doesn’t care too much for statistics and has decided to beat the odds! We will take her as she is and love her unconditionally. We won’t know the extent of the developmental delays until she gets a little older, but we are doing everything we can to aid in her development. We truly don’t know what is in store for Abby because there haven’t been enough cases to really tell us. However, we are extremely encouraged that Piper (another girl with CCMS) has symptoms similar to Abby’s and is 3 years old! We do know that infection is her biggest threat...and you thought I was a germaphobe before!!
Could future children also have CCMS?
Yes, the percentages for additional children having the same syndrome are pretty high. It’s amazing that the syndrome is extremely rare in the world, but then extremely common within families! I don't think we'll be testing out those statistics!
Why is Abby’s neck hyper extended in some of the pictures?
Right after she got her trach, they put a rolled-up towel under her neck to keep everything still and easily accessible. While they did have the towel under her for a while, it is usually only there for trach changes now. I think that some of the pictures may have just given the appearance of her neck being hyper extended.
What size and brand is Abby's trach?
Abby has a 3.0 Shiley trach. It's the smallest that Shiley makes. Since a smaller trach has to be on hand in case of an emergency when they couldn't get the 3.0 back in, they would use a 2.5 in another brand.
Will Abby be facing surgeries in the near future?
Aside from the trach surgery Abby has already had, she will be getting a g-tube (gastrostomy feeding tube) placed in her stomach sometime this week. This will replace the NG tube you see through her nose in the pictures. Abby also has a cleft soft palate that will need to be fixed. The surgery is typically done between 9-12 months, but the timing of the surgery will depend on how Abby’s respiratory status is. We may have to hold the surgery off a bit until she is more stable. Abby will also need multiple surgeries on her spine and ribs, but those will not be until she is a little older. Let’s just say that she will be well-acquainted with hospital recovery rooms!
Is the trach temporary or permanent?
At this time, Abby has a temporary trach. I use “temporary” loosely because she could have it for many years! However, a permanent trach could be put in if the doctors decide that her airway will never be secure otherwise. We are hoping that her jaw will eventually grow enough to allow her tongue to move forward and not block her airway.
What were the results of Abby’s Upper GI?
The test came back fine! There was a little reflux, but nothing out of the ordinary. They changed her calorie mixture from a human milk protein to a formula-based protein and she is tolerating that much better. We think that the spitting up was related to that. (Clarification: Abby is on breast milk, but they add a powdered mixture to it to increase the amount of calories she receives so that she can grow!)
How long do you expect to be at the hospital?
After Abby gets her g-tube placed, she will need to recover and grow a bit more. This will probably be several weeks. Hopefully at the beginning of December, we will be transferred to a pediatric hospital where they will do Abby’s trach rehab and our classes. We have to be trained on trach care (there is A LOT to learn) and have to pass tests on each piece. Matt and I will both be trained, along with possibly a few other family members to have as back-ups. We expect to be at the pediatric hospital another month. Therefore, we will be at RMH until after the New Year.
How often do you get to see Abby?
The NICU is open 24 hours a day. When I was still in-patient (and Abby was very, very sick), I was pretty much glued to her bedside. Now that we are at RMH, I walk to the hospital after breakfast so that I can be there in time for rounds. I am always there by 9 a.m. and do not usually leave until between 4:30-5. After dinner at RMH, I go back to the hospital at 7:30 after shift-change and stay until 9:30 or so. Thankfully, there is a 24 hour shuttle from the hospital that will take me back to RMH so that I don’t have to walk at night!
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Monday, November 15, 2010 11:46 AM, EST
This is the first of a new series, “Monday Mornings With Matt.” There are 3 ways that you can tell it is Matt really writing.
1. Spelling is bad.
2. Different point of view on things.
3. I like to list things, my brain works that way so my writing comes out that way.
Without further ado here is the first installment of Monday Mornings With Matt (or MMM for short, said as if you just ate a bite of juicy steak.)
The Little Things
I have noticed that it is the little things through all this that have become very special. Let me give you a few examples. A hug from a two year old on her birthday and having her rub your shoulder like she is comforting you is special. A hug from a teenager who is looking outside of their own little world, which is rare, because they want to comfort you. My son running up to me after 12 hours of not seeing me and yelling I missed you. Seeing my wife smile at Abby. Abby opening her brown eyes and looking up at me. A nurse who offers a chair. A smile form the security guards, who are starting to call you my name. The people at the hospital knowing your name. Quick phone calls from Julie. Texts from Julie. Meals provided by volunteers. Cards from friends and family. People who tell me they love me. People who tell me they are praying for us. Short visits from church family members in my office. People who just let me talk without interruption. Notes from people saying that they miss me. All four of us, Julie, Caleb, Abby, and me together.
Little things that mean so much. Our God is bigger and He uses the little things. Thank you to you all.
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Monday, November 15, 2010 5:18 PM, EST
Q & A Part 2
Why would Abby need blood?
She has had lots of blood taken from her over the last 3 weeks through her arterial line (which she no longer has) and none replaced. She also had a surgery that involved trauma and blood loss, so her little body couldn’t quite keep up with all of it. Her numbers weren’t really low—just borderline anemic. If she hadn’t been otherwise symptomatic, they would have left her alone. I’m actually kind of glad they didn’t try to wait it out because there has been a huge improvement since the transfusion! Plus, she needs to be healthy for her pending g-tube surgery.
Do you enjoy visitors at the hospital?
We do love to visit with people, but the stress of our situation doesn’t allow us to be overly entertaining or wonderful company! We are kind of taking visitors on a day-by-day basis according to how things are going that day. In addition, only people who have gotten a flu shot can visit Abby. This is a NICU rule and one that we strictly follow. We also need to be very careful about people visiting her who have been/are sick. This includes a slight cough or sniffle. If Abby catches a cold, it could turn into something very, very serious. Her respiratory system is not strong enough to fight an infection. If you would like to visit, please contact us directly. Often, we don’t have a lot of notice for Abby’s procedures. We normally touch base with people in the morning to see if that day will still be a good day to visit. I’m sorry if we seem to have a lot of rules about visitors. We know you’ll understand that we are trying to protect Abby while also allowing ourselves space to process and just “be.”
How much time do you spend with Caleb?
Caleb is in preschool during the week on Tuesdays and Thursdays. We want him to continue this for consistency, so he stays with my sister for the most part. Matt brings Caleb up on Thursdays and he stays for the weekend. Naturally, this is all very subject to change—and pretty much has, for one reason or another, every weekend! We love our boy so much and want to be with him as much as possible! Learning to spread your love between two kids is hard enough without one of them being seriously ill!
Does Caleb stay at RMH when you’re at the hospital?
Things are a bit trickier when Caleb is here. Often, one of us will stay at RMH in the morning with Caleb while the other goes to the hospital to hear the doctors round on Abby. Then we all meet up at the hospital for a while and we take turns with Caleb in the waiting room. When he is healthy, he goes in for short visits as well. Unfortunately, he’s had a cough that has stuck around for a while and we do not want to take any risks with Abby. We also often have family members come up on weekends and they also take turns hanging out with Caleb while we are at the hospital. That has been a huge help, because then we can go see Abby together. We have been trying to find a balance of being with Abby while also spending time with Caleb, so we make sure that we carve out some time when both of us are able to be with him at the same time.
Can we send things to RMH?
While we love getting mail here, Caleb especially, please be careful about what is sent. We have open mailboxes and have had at least one instance of something being taken out of it. (We left something in there that had been donated so that Caleb would have mail to get when he came, and it was gone when he went to get it.) :( This saddened me to no end, but there are definitely people with varying backgrounds here. If it is something that you really want us to receive, it would probably be best to send it to our house (my sister gets our accumulated mail at the post office a couple of times a week) or give it to a family member. We do love getting cards in our mailbox though!!