This is a marathon not a sprint!

As I sit in PICU and reflect on the stress, tears and crazy organization mode I’ve been through in the last two weeks I realize that was my way of dealing with the unknown and lack of control. The scariest moment as a parent, is when you hand your daughter over to the medical team, while completely competent, they’ll never be you. That happened around 12:15 today, around 12:45 we talked with Dr. Brown and as suspected her airway was severely restricted, she was stable and he was ready to do the laryngotracheal reconstruction surgery or LTR. At 3 pm we met with him post surgery, everything looked good she would have drainage tubes at the site as well as being heavily sedated to keep her from moving and allow her to heal. For those of you that like the medical part, they used a 3mm tube at the beginning (same size that was used at birth) and a 4.5mm tube currently. Just before dinner she woke up slightly, long enough for me to sing to her, caress her head and wear my momma’s here hat. The plan is to recheck her on Friday and potentially remove the intubation tube. So we wait.  ...

What Causes Noisy Breathing?

Bet you never really thought about noisy breathers, other than if they were interrupting you or in your personal space. We first learned about Strider (noisy breathing) and Subglottic Stenosis after having 29wk g/g twins in Dec 2011. One of them had a hoarse cry and noisy breathing. You can learn more on noisy breathing here. After a visit with an ENT we decided to see if she outgrew it. All was well until July 2013 when we found ourselves at http://www.mottchildren.org hospital. After a one week stay we were discharged with a diagnosis of Asthma and possible BPD and follow-ups that included an ENT and swallow study. After a swallow study that showed aspiration we visited with the ENT where he did a scope to check her airway.  As reference an adult’s airway is the size of a quarter, a child’s the size of a dime, he believed hers is the size of a coffee straw.  When we get a cold we build up mucous in that area that further restricts our breathing. Since we are heading into fall it was important to find out what was going on as quickly as possible. Tomorrow we will find out. They will do a sedated scope to see what the restriction looks like and if it is restricted they are recommending a laryngotracheal reconstruction, using cartilage from  her thyroid. This is the best description of the procedure (I haven’t watched the video, some things are better left to mom’s imagination) http://www.chop.edu/service/airway-disorders/conditions-we-treat/subglottic-stenosis.html As you can imagine tons of questions and lots of worry. The advantage of using the thyroid cartilage vs. rib is one...