Life with the oldest sister who loves theater and fashion, a boy who has Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius, but thinks fishing and electronics rule. The most amazing middle-child-sister-aspiring artist. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum who loves littlest pet shops, American girl dolls, playdates. And one yummy baby brother who has a coarctation and bicuspid valve and thinks super heroes are the best.

Friday, May 29, 2015

Biopsy day

Gator is having a big ol' biospy today. This  is a little different from his regular monthly biopsy. usually we can go through his neck and its pretty fast and usually easier to recover from. Today the plan is to go through the groin and they will be taking small bits of tissue from all around his heart. They will also be looking at his pulmonary arteries. I am hopeful that everything looks great and that we can still hear those magical "no rejection" words. There is always a caution that there can be a little rejection. We were the first case this morning, we made it to the hosptial at 5:55 with a check in time of 6:00 am. Alex was in great spirits and found a friend to play video games with. When we got through most of the check in and it was time to change he got a little pouty. Those hospital pajamas are "breezy". I forgot that detail and didn't bring his jacket with us. I  promised he only had to wear the shirt until we walked through the hospital. As soon as we made it to cath lab he wanted it OFF. He picked birthday cake air and I left him.... I get to hang until he is done. It's nice to sit here and see so many kind and familiar faces. 

Last week MayLee saw her Pulmonologist. We talked about all the advancements and classes he seen and been to in regards to NEHI. I am thankful he is doing so much to understand this very rare lung disorder. May charmed her way into the hearts of every nurse and doctor. She chatted their ears off and told stories. I wish I would have made a video because she really does talk and talk. In Doctor Uchidas words "we are doing beautifully with her". We need to do a follow up CT but considering baby on the way we decided to wait and talk again in two months. There are some new genetic tests that we can do, they might be pretty expensive and because they won't change anything by way of diagnosis or treatment we will probably opt to not have them done. These tests are elective and not part of a study, something that is only informative to our family and won't help other kids, so we will hold off for now. We got the OK to try and wean day time oxygen. I jumped right on that when we got home. I turned off her concentrator and checked her Sats to see her room air baseline... She is normally on 1 liter. We  need her Saturations to stay above 95. It was sort of a bummer to check her and have her dip to 88. I put her back on her O's and was able to get her to 1/2 liter... We have stayed there for a couple of days and I checked her yesterday and she was 92 so i had to bump her back to 3/4 liter. I guess this will be a pretty slow wean. 

We had an amazing Memorial day. The kids noticed the flag in our yard and asked why it was out there. It was a great way explain what Memorial day is and why it's important for our family. We are so thankful for those in the service who have blessed our life. We talked about 'Big Alex' and his help in keeping our country a safe and happy place to live. We also talked about Alex's donor and donor family. 

No comments: