Another week of ups and down. Day by day, we have been a bit bored. But since the last update we have not made much progress, and Oakes' team is still shrugging their shoulders a bit wondering what is happening with our guy.
Oakes was awake through the weekend, and looking good. On Sunday night he started struggling and was re-paralyzed. For the most part, while he was paralyzed he was just cruising along, but he had a few episodes where he woke up a bit and started fighting the vent, his numbers went haywire, and he would get more sedatives and more paralytic. The nurses and doctors could tell by listening to him breath that his airways were obstructed so yesterday he went to the OR with Dr. Huddleston (probably the last time before Dr. H leaves Children's....boohoo!) to have his airways dilated again. This was trip number four. Everything went just fine, Oakes was stable, the procedure went as planned, but Dr. H said that Oakes' airways were not very obstructed. He only ballooned the right side. When returning from the OR Oakes' numbers were beautiful. He slowly woke up, opened his eyes, got his thumb to his mouth and had a pretty uneventful night until about 5am this morning when he had one of his fits and needed to be re-paralyzed.
The big question from yesterday is, "If Oakes' airways didn't need the dilatation, then what is going on, why does he need to be paralyzed to breath?" One thought is that he is having some kind of spasm in his airways that is causing his airways to collapse, much like someone with asthma. But we don't know why he is having these spasms or what triggers them. If this is the case his team is considering putting stents in his airways. Typical stents would be a big mess, Oakes would out grow them quickly and they can end up damaging the airway long term because they would need to be surgically removed. Not a good plan. So they are looking into using stents that are bio-degradable that are clinically designed to be used in an adult's heart. These could last for about 3 months, which would be huge if Oakes could breath, and grow and thrive for 3 whole, uninterrupted months. Dr. Molter, Oakes' ENT, and the Surgeon that did his slide-tracheoplasty when he was just 12 days old will come and look at Oakes' airway. Dr. Molter and Oakes' nurses will have to agitate Oakes to induce one of his fits once Dr. Molter has a tiny camera in Oakes' airway to see exactly what is happening. This will happen possibly tomorrow or the weekend.
Everyone's attention is on this airway issue and what can be done about it. If the biodegradable stents are not an option, then we are looking at no real good options. As things stand now, Oakes cannot remain paralyzed long term. And going to the OR once a week is not a long term option either. So, we are praying for more optiosn, more creative ideas, 3+ months of uninterrupted breathing, living, and thriving. We are praying for more time, healing, miracles and just all of the good stuff that we can pull into our vortex. We are also saying prayers of thanks. Thanks for all of the good stuff that is already in our vortex, thanks for the time we have been given, the miracles received, the healing that has occurred and all of the amazing options and blessings that we have already had.
Other than the medical stuff, Oakes has had a good week. We have read lots of books. He has been rocking out to Coldplay and has listened to several Baby Einstein DVD's. Isla visited over the weekend, I have held him and we have been brainstorming Halloween costume ideas. Not to mention, the Cardinals have had a great week, which everyone on the floor is excited about! Oakes' buddy, and fellow "Superman" Wyatt (a 6 year old who got lungs 32 days ago) went home this week, and we celebrated that as well as several other kids that we have watched make the exciting walk down to 7West. There is nothing more exciting that can happen on this floor that someone taking that little step towards home!
Love to all of our friends!
Oakes, our QT Pie, last weekend when he was moving around...
And we brought Oakes' alligator for a blessing too. Thank you Harry for taking care of the little gator, he had the best seat in the place!
Getting ready to head to the OR yesterday. Warrior faux halk all done up and appropriate "Go Cards" message on Oakes' NIRS sticker.
We sent Oakes to the OR with a silly but special message for Dr. Huddleston...."Thank for the good times, Chuck! I love you and will miss you, Oakes PS: Go Cards!" It's comforting that Oakes and Dr. Huddleston are on a nickname basis. Dr. H leaves next week so this could be their last time in the OR together. When Dr. H came up to tell us about the dilation he had a huge grin on his face and this card sticking out of his coat, he seemed to appreciate it. We LOVE you, Dr. Charles Huddleston and will miss you so very much!
Feet propped, tucked in with a special blanket and ready for the Cards game!