Jo had a great night with no issues. He continues to breath effectively with minimal support and looks great. He is on minimal medication and yesterday the idea that he may be discharged from PICU was discussed. The idea that he is no longer in critical need is so exciting but equally scary. There is nowhere in the hospital that could match the amazing care Jo is currently receiving. Obviously we now know every nurse and Dr. so there is huge level of comfort with his current level of care.
Off course he would remain in PICU if we follow the plan for a tracheotomy tomorrow at 1300. I say "if" because we are leaning towards delaying this procedure. It is a big step and although it is reversible Jo's condition has improved so much the past 3 days we are not sure it is absolutely needed. We spoke with the surgeon about it and he suggested we don't do anything unless we are completely sold on the idea. After reviewing Jo, he was clear that delaying the process a week is no risk to Jo's current condition. In fact if we were to wait and something occurred that indicated he needed the trach obviously we are in the right place to change plans.
The risks associated by not doing the procedure are fairly clear. There is the potential that Jo can not sufficiently secret fluids from his breathing canal and cause pneumonia. He is young and strong and a bout with pneumonia is not life threatening, however getting sick multiple times will eventually weaken his lungs and heart. The trach allows us to more easily clear the airway from fluids and thereby reduces the risk for pneumonia. The second risk is just the failure of the muscles along his airway. The trach is below the tongue and does not require strong next support to keep the airway clear. In effect Jo sounds like someone sleeping with sleep apnea at times. His cough is strong, he lifts his head of the bed, and all of the muscular support seems intact currently.
All of Friday and throughout the weekend Jo has had less and less trouble breathing. He rarely labors to breath, and is on minimal oxygen. In fact in one instance his nasal O2 tube fell out and no one noticed for about 15 minutes, he did perfectly fine! Today will tell us the best route for Jo.
Aside from breathing Jo has also shown some nuero function over the past few days. He doesn't like the cold stethoscope and moves when it touches his chest. If you moves his arms for therapy he actively resists at times. I tickled his feet and each one moved in response. He has progressed from producing tears, to actual weeping and crying when he is uncomfortable, Jo is trying so hard to get out of the fog. It made us cry to see him cry, but it was also uplifting to see something so typical! The most exciting thing is to see him squint his eyes, together. It seems like he is trying to blink!
We need prayers and positive thoughts for Jo to open his eyes and strength for us as parents to make the right decision on the tracheotomy. We are very close to our next miracle, Jo is fighting and God is with him, we can feel it!
Jojobinks mommy and daddy are here and your friends and family are thinking of you constantly. We know you are battling to come back to us. We know how strong you are, we know God will push your through the fog when the time is right. You have an amazing group of angels praying for you everyday. The world needs your smile, your laugh, your beautiful eyes, and we need your hugs. Keep fighting Jo, the lord is with you reaching his hand to lift you up. You were a miracle from day one, a priceless gift to the world and us. One miracle at a time my baby boy. We love you to the moon and back sweet angel, mommy and daddy are here. You got this!