Wish we had better news, but Gabe will be here a while longer. Dr. Weiss, the pulmonologist, met with us and recommended Gabriel get a trach and be on a ventilator. She said the sleep study showed his CO2 levels were high, which puts him at a significant risk for a "sudden critical incident" Basically, since most of Gabe's diaphragm is a patch, he cannot control it as well. His diaphragm is not able to pull in, and push out air adequately. Therefore, he is not able to get rid of the CO2, or ventilate, as well as necessary. Dr. Weiss is concerned that the CO2 will build up and he will stop breathing. He could also be in danger if he gets a cold, etc. since he has very little reserve. She said his breathing will get better over time, but it will take about a year. Gabe would have to have the trach for that time frame. If he does get a trach, he could be here two more months. Other options include sending him to St. Mary's NICU, but they can't keep him there for a year. Also, he is at a greater risk for getting a cold or infection in the hospital. She also said we could decide to just take him home and monitor him closely. But if we did that, and something happened to him, we could not live with ourselves.
Dr. Weiss told us to talk about it, and said she would talk with Dr. Rouse. Dr. Rouse talked with us later. He didn't come out and say it, but we got the opinion that he did not agree with the trach decision. He suggested what we had discussed with each other: repeating the sleep study. Gabriel had been off CPAP for under 48 hours when he had his first sleep study, and might have still been adjusting to being on only oxygen. Hopefully, in the time since the first sleep study, he has gotten stronger and has learned to use his other muscles better. Dr. Rouse also said he would discuss this dilemma with his partners and get back with us. We are in a holding pattern for now. They probably won't get to his sleep study until Monday, and it will take a couple of days to get the results. We'll pray that the results are better this time and he can come home. But if the results are the same and he has to get a trach, we will consent. We have to do what's best for him. We just want to make sure the trach definitely is what he needs before we agree to it. We have to keep thinking about where he started and how much he has overcome. At least they found this before he went home. Just one more bump in the road.
Happy Birthday Gabriel!
14 years ago
7 comments:
Peggy,
I'm so sorry that the news today wasn't what we hoped. Perhaps with another week under his belt and a repeat study....we may have a better outcome, or at the very least, more knowledge to make the best decision for him and you guys. And I'm sure that Dr. Rouse will pool his resources and come up with the best plan for Gabriel....regardless. And when the time comes to go home, you're ready to walk out the door. Hope you have a good day tomorrow...and I'll see you guys on Saturday. --Nurse Laura
Sorry to hear about the "bump in the road," but Gabriel had to start being a stinker for you at SOME point -- after all, he's already 2.5 months old! This is just his first official act of defying his parents' wishes. :-)
Yes, it's a big short-term disappointment...but I'm confident that it will be nothing more than a blip on the radar screen when you look back at this giant miracle in the distant future.
Lots of prayers continuing for you and for Gabriel! I'll be praying that the doctors have wisdom and make the best decision for him.
As much as we wanted baby Gabe to come home today, I think the doctors are still waiting for the perfect time and have Gabe's best interest in mind! We have to remember that he still is our little fighter! Prayers are coming from everywhere!
Great job on updating the blog, Josh, I knew you had it in you!
Josh, Peggy, and kiddos - I know that this is not the news that was wanted, but you have such a great attitude. We came home from Riley the first time after four months and had to be life-flighted back up four days later from St. Mary's. It was very traumatic to go back because we felt that we had failed as parents. Hang in there. We are praying everyday. As you said, you have to understand where Gabe has come from! We have been there with our son, Bailey. Pulmonology talked about traching him and said that he would have to be on oxygen the first three years of his life but none of that happened. We got off of oxygen the second time around and he was never on oxygen again:) Hang in there! Mandy Patterson
Keep in mind, that no matter what happens with the trach, after Grandma leaves, you've got a pediatric nurse ready to help you whenever you may need it, night or day...although by the end of this, you guys will be such pros, you won't need any nurses!
Sorry to hear of this little bump in the road but thanking God that the Dr's are doing their best to keep your little baby boy safe and comfortable. I'll continue to pray for you and Gabe in this change of plans.
Argh! That so stinks that Gab doesn't get to come home. It all has to be God's Timing. That is so hard to wait on sometimes! He could be preventing something happening. You are right just remember what a fighter Gabe is and how far he's came! We'll be sending more and more prayers up for Gabe and all of you.
Did you get my package? I hope you like it!!
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