All, it’s been a couple weeks since our last update. As you know the last update was gut-wrenching, but this one will have a bit more of an optimistic tone. Last we talked, we were told that Oakes required a double-lung transplant in order to survive longer term.
There have been a few key updates since then (apologies if some of this is a bit repetitive):
1. Lung transplant list. Oakes is officially on the lung transplant list as of last Friday. It typically takes two to three months for a baby Oakes’ age to find donor lungs. The process for this, as we have learned, is pretty crazy. Apparently, there will be several offers to St. Louis Children’s Hospital (SLCH) as donor lungs become available, but they will not be accepted for various reasons after intensely reviewing medical records and other pictures/videos available of the donor. As an FYI, donor lungs become available when another baby has been declared brain dead and the donor’s parents are willing to donate their baby’s organs – an amazing scenario that is hard to even contemplate in our position. Once an offer is accepted by SLCH, it gets pretty tense and exciting. Apparently, whichever cardiothoracic surgeon is not on duty (either Dr. Huddleston or Dr. Eghtesady) will fly to the donor’s home city, with a small team of assistants, and thoroughly examine the donor. Assuming that goes okay, the SLCH surgeon will perform the harvesting of the lungs and situate them in a Coleman cooler. They’ll immediately return to St. Louis and the operation will follow closely after their arrival. We’ll be notified relatively early in that process, but if we get the call, it’ll be very urgent that we get to the hospital. There is the chance that, at any time, the organs can be rejected due to mishandling or other reasons (makes sense why SLCH handles the organs the entire time; I love this type of focus!).
2. Pre-transplant possibilities. Dr. Huddleston has continued to leave open the very, very slight possibility of an attempt at a surgical fix before we proceed to the lung transplant, which is clearly the last resort because of the poor mortality rate post-op. It sounds to us that he may not know for many more days, or possibly even weeks, if he’ll elect to go down this path. Most of this decision will be dictated by how Oakes recovers from his cath procedure a couple weeks back, how he handles extubation and what the future echocardiograms show.
3. Extubation. Speaking of extubation, we had a HUGE day this past Tuesday as Oakes was extubated (taken off the ventilator). They had been very slowly weaning him off the machine the last couple weeks. It was challenging because Oakes had a couple bad days including catching a bacteria from the ventilator tube itself (another reason they try to get them off the machine asap), but ultimately he gave them enough confidence to extubate. We were definitely holding our breath during extubation. They slowly peeled the tape off Oakes, which hurt the little man quite a bit and once they had the tape off, they literally yanked the tube right out of his throat and mouth. He fussed quite a bit and they quickly put an oxygen mask on him, which he of course hated as well. But his numbers (oxygen levels, blood pressure, carbon dioxide output, heart rate, etc.) were excellent! That was the key. Once we got him to calm down, things were better. Now just because he was off the ventilator didn’t mean that he was off oxygen entirely. They have to continue to give him help for a while before they try to wean him off oxygen entirely, so they had this ugly mask that covered just his nose and was wrapped several times all over his head. That only lasted about 36 hours because this morning at 5am he decided he had had enough and threw a big fit. So they pulled the mask off and replaced it with a cannula breathing tube (the tube you’ve seen that has two little prongs going up each nostril). They said once he got that in, he relaxed big time and went right to sleep. Becky and I have both got to hold Oakes the last two days which has been awesome! Without the mask and ventilator tube, you can see his cute little face again!
4. Fundraising. As part of SLCH’s comprehensive patient and family support for organ transplants, they have a staff member who advises families on fundraising efforts. I honestly never thought about this, but it makes sense. I guess there have always been worries about use of funds from fundraising, so SLCH works with a couple organizations that specialize in this type of fundraising. Essentially, they have a contact person from the organization who oversees any fundraising efforts and controls the funds. They deposit those funds into an account specifically set up for Oakes and they establish a trustee from within the organization who controls payouts and they strictly only payout to support fees directly related to Oakes transplant and transplant recovery. I have no idea if we’ll get around to doing this (I’m sure we’ll need help if we do this because we don’t have the cycles right now) and I’m not sure what we’d even do if we decided to try something, but we’ll keep you posted.
5. Stable. The good news the last few days is that Oakes is stable. So far, in true Oakes fashion, he is impressing everyone with his recovery. He has done better than his doctors have expected up until now. They credit the infamous catheter procedure that occurred on June 9th, two weeks ago today, when we almost lost him. Apparently the ballooning of his pulmonary veins worked much better than they anticipated. Now this doesn’t mean that those veins will stay open – history tells us that these veins almost always narrow again and need either future rounds of cath procedures to balloon them up, some stents to try to help for a time or a full lung transplant.
6. Appendix. It seems like months ago, but Becky has recovered nicely from her appendectomy she had in the wee morning hours of June 12th. She had a follow up doctor visit yesterday which went well and he confirmed things are well. She’s a great example of toughness for the Oakes man!
7. CICU friends. We have made friends with a young couple in the CICU – Dave and Chrissy – who have a little girl, Elizabeth, in the CICU. Dave and Chrissy, two months ago, had twin baby girls. One was perfect and one had a hole in her heart and was missing a lung. Last night, Elizabeth became the third member of St. Louis Children’s Hospital to get an artificial lung transplant. The surgery went well and she is recovering and will soon go on the lung transplant herself. So yes, Oakes has a girlfriend already….
8. Thank you. I know I’ll miss some key folks, but we are long overdue to thank these groups:
a. The extended Fox Family. Becky’s family – her sisters, brothers, parents, step-parents, aunts-uncles, etc. – have been an amazing help. I cannot count how many times they have traveled from all over the country to help us for days or weeks at a time. In fact tomorrow will mark the first day since June 8th that we haven’t had at least one of them staying at our house while visiting from out of town!
b. Ellen Moriarty and Cindy Fitzgerald. These two friends established a Care Calendar TWICE to have folks sign up and bring us meals and snacks and goodies and groceries or whatever else we needed for several weeks. This was incredibly helpful and so sweet of them and everyone who helped out.
c. Ortyl Family. My sister and parents have also helped whenever we have needed them. We’re fortunate to have my parents in St. Louis to help on a moment’s notice.
d. The SLCH staff. They have been like family to us and have provided the best care possible for Oakesie.
e. Everyone else. We have read every single email and text that all of you have sent and each one is super special for us and means the world, we mean that. We have not been good, especially after the last 2-3 updates of replying to all of your email notes so we apologize for that, but trust us, they are being read and we feel all of the love and we can assure you that Oakes is too!
Thank you all for your thoughts and prayers. I thought I’d attach a picture from today as well – this was Oakes right before I got to hold him this afternoon. It is awesome that he is awake, alert, comfortable and not yelling at his papa to take the tube out of his mouth! We will continue to keep you posted as best we can.
Greg, Becky, Isla P. and Mighty Oakes