Friends and family – we hope you are enjoying a fantastic start to a long holiday weekend with your families. It has been about six weeks since my last update. Oakes was doing very well and was on the verge of possibly coming home. In fact, I actually said in my email that “barring any setbacks” we might have him home in a few weeks. Well, we had a setback and we need your prayers and thoughts as much as ever right now.
Shortly after my email, he had some trouble breathing and had to be moved from 7 West back to the CICU. They discovered his airways were a bit narrowed so they scheduled a bronchial exam where they ballooned his airways. While they were down his throat with the scope, they decided to take a biopsy of his right lung since it was about due for the every-three-months biopsy of his new, transplanted lungs. Unfortunately, during the procedure, Oakes’ fragile little lung was punctured. This created some issues with air building up between his lung and his ribcage, blood in his lungs and, obviously, even more difficulty breathing, particularly whenever he was aggravated. In the early days of May, Oakes seemingly was doing awesome – he was happy, smiling, laughing, reacting super excited when he heard the words “Isla” or “mama”. Even though we knew his right, lower lobe of his lung (the area which had been punctured in April) was partially collapsed, we assumed during those wonderful couple of weeks in May that the punctured lung was just a minor blip and that we were almost back on track to go to 7 West and get a step closer to home. We were going so far as adding electrical outlets and re-arranging our first floor to make room for Oakes’ “bedroom”. He wouldn’t be able to go upstairs with all of his equipment (vent, feeding tube, medicine pump, etc.), so we were adapting our living arrangements to accommodate our mighty little guy.
Things turned poorly about a week ago. Oakes had a couple of fits last weekend in which he was inconsolable. I was there for one of the fits and tried all my tricks and just could not get him to calm down and he was vigorously fighting the vent, causing severe breathing issues. In both cases he had to receive a “shot” of paralytic so that we could get him under control and “in synch” with the vent. This became more frequent early in the week and so the staff has been running a number of tests to try to understand better what was going on, which brings us to today.
We received news today that Oakes’ lower right lung is completely collapsed and looks to be irreparable (my words, not the doctors’). It was described as just a deflated mass of lung tissue. It was so deflated or “consolidated,” as Dr. Duncan described it, that his diaphragm had moved into the now empty space. The doctors are trying several things this weekend in an attempt to re-inflate the lung, but at this point, Oakes has virtually no reserve air capacity to withstand anything other than a paralyzed state. For instance, he has an infection in his left lung right now, so with a phlegmy left lung and a deflated right lung, he can’t really breathe without significant help and being paralyzed. If he were to get upset with a collapsed lung, he’d quickly de-sat into a bad place as well. So we have to get this lung fixed asap.
The doctors are targeting Tuesday to see how Oakes will respond to the various treatment efforts over the weekend. If his lung doesn’t respond, we won’t be left with good options. It hasn’t completely sunk in yet for me and Becky that we are all of a sudden at this point. We keep shaking our heads and asking how this can be; it is completely surreal to us. So we are praying like crazy that Mighty Oakes has yet another rally in him. How much can one kiddo take? Doesn’t he deserve a break or two here? We’ve been in similar desperate situations before and have seen him rally, so hopefully that is what happens here. We just would feel comforted to know that our loving friends and family know where we are and are praying and thinking good thoughts for our little turkey this weekend.
In the meantime, we have had incredible progress with Mighty Oakes Heart Foundation – getting more and more publicity, having incredibly touching tributes made to Oakes, having friends raising money – lots of money – through various marathons and other events. And we’ve been fortunate to help a few families now. I’ll save all those details for another day, but just know that things are going great with the foundation.
Have a fun weekend with your family and love to you all. A couple classic pictures of Oakes are attached. Isla loves climbing in his crib and laying with him….but really, who doesn’t?!
Greg, Becky, Isla P. & Mighty Oakes