Tuesday, October 27, 2009

October 27, 2009

Overall Gabe had a good night last night and a good day today. He had his usual fidgety moments, but Nurse "J" last night, and Nurse "S," today, know him well, and were able to calm him down. We have found that quite often a "simple" repositioning is all that is needed to get Gabe back into his happy place. He is a big boy now and is not happy laying in the same position all day. If it wasn't for that darn ET tube and those darn chest tubes we could pick G up and bounce him around the room. This is what he really needs. Gabe is a true boy and prefers constant movement. Last week just purchased a crib vibrator (yes they actually sell such an item), and we have all been doing the happy-dance ever since. Now us and the nurses don't have to take turns whacking Gabe's bed, we just push and button and G instantly calms to the soothing vibrations of his new crib gadget. That thing is by far the best $30 we have ever spent!

Jesse made it to the hospital in time for rounds this morning. There had been some talk of trying CPAP again, but Dr "R" doesn't feel G is quite ready for that yet, and would rather spend the next few days weaning the Versed, picking back up with the very slow Hydracortisone wean, and continuing to chip away at the vent settings. Gabe is down pretty low on his vent settings now, but they did have to go up a bit today because his CO2 levels have been slowly rising over the last couple of days. We have already noticed that G seems less twitchy. Maybe it's all in our minds or maybe the Versed really is the culprit? Either way it's nice to see Gabe's eyes track better and move together. Another topic of discussion this morning was G's nutrition. Becuase his body has never handled fluid volume well (it causes him to puff) they have never been able to give him enough calories. The result of this is Gabe is not really growing. His measurements are not much different from those taken at birth. Hopefully Gabe can start tolerating more calories and we can start improving his nutrition. This is a concern, but really in the whole scheme of things, not the most pressing issue at hand. We can always put him on his big sisters diet of dairy products, strawberries, and Pirates Booty and get him fattened up in no time once everything else is working properly.

For the last couple days Gabe's right chest tube hasn't been putting anything out. An ultra sound yesterday showed there were no fluid pockets on the right side. I knew better than to get too excited about this information. I crossed my fingers and hoped the right side had finally dried up, then alas, last night it started draining. Bummer! The left side has been producing a lot, but didn't put any out last night. Then today they switched again and the right stopped and the left started up again. Who knows what the heck is going on with those pleural effusions??? I just want them to go away!

Noonan Syndrome update: the results are back from the genetics testing for Noonan's Syndrome and..."no mutation detected" are the results. However only "approximately 50% of Noonan syndrome cases are due to mutations in the PTPN11 gene" and "these negative results neither confirm nor rule out the diagnosis of Noonan syndrome. Mutations in other genes related to Noonan syndrome can not be ruled out." Ok??? Wow! That was really helpful. Our take on this whole Noonan Syndrome thing is "whatever!" If he has it, he has it, and if he doesn't, he doesn't. It is not going to change the course of his treatment, it is not going to change how much we love him, so really Noonan syndrome or no Noonan's syndrome..."whatever!"

Kayla went to bed early tonight, the daily chores are done, so I think I'll go park my butt on the coach next to my husband and enjoy a couple scoops of pumpkin ice cream.


cmacdon72 said...

Oh Shan & Jesse, First off glad Jesse is home safely! Secondly, love the vibrating machine…Thank god someone though about babies like Gabe, Thirdly.... I hope you relaxed last night with your hubby you truly deserve every moment.. Love you both..

TheSweetOne said...

You're right. Having an NS diagnosis right now doesn't change anything in terms of his treatment. The hurdles you are facing now won't change just by knowing where any DNA change happened. There's lots of time to work out the genetic details some other day. It's not like his DNA is going anywhere. Hang in there!