I am completely exhausted, but an update is needed.
I will start with the latest. Oakes has had a rough couple of days. He has been throwing these "Oakes fits", where he fights the vent, bears down, and his numbers go crazy and he ends up getting paralyzed. The fits have happened several times this week, and unfortunately they have been getting worse. I initially thought it was his airway, I thought there must be some kind of obstruction. But slowly over the last couple of days Oakes has been retaining more and more fluids. He is just a stay puft baby right now, and clearly he is miserable. When he retains fluid like this, the extra fluid in his system pushes on his diaphragm, which pushes on his lungs and makes breathing harder and very uncomfortable.
So, we had mentioned before that there was talk that Oakes might need kidney dialysis and it looks like the time has come. I am a little freaked out because it is dialysis. And it is his kidneys. I have kind of wrapped my head around the idea that Oakes is a Heart baby, and Lung baby, but not that he is a Kidney baby. And I am not going to just yet.
Here is the scoop. Oakes' kidneys are damaged, yes. They are not normal, but according to the Kidney doc that I spoke with late tonight, they are in great shape considering all that they have been through. Oakes' kidneys function at about 50%. And he could live with that. Kids don't normally go on dialysis until their function is 10-15%. Since transplant Oakes has been on diuretics pretty much non-stop. His Dr's are constantly adjusting his doses based on his weight and his urine output. And since transplant, we have never seen a huge improvement in their function. You may remember a catheter was placed for dialysis months ago, but was never used. So now, the thought is, the line is there, it can't hurt, it might help tremendously, lets try it. And so, we are going to try it.
Ultimately we want this to help his kidneys, keep Oakes more comfortable, as well as let his lungs and heart have a break too. I am going to look at this like a little kidney function vaca. The first day or two of dialysis may be uncomfortable, but not painful. He will likely have 6-8 hours of dialysis a day, then they will turn it off over night. We can still hold him, move him around, etc. Of course Oakes and all of his numbers will be watched carefully, and in a few weeks or months we may not need it anymore. That is the prayer at least.
Backing up more, last Friday Greg and I had a Care Conference with Oakes' team. It was the largest CC to date for us. In the past we have sat in a cozy room with 2-3 doctors, but this was a dozen people in a conference room. Overall it was a good conference, maybe the best one yet, but still these meetings are overwhelming to me. I left the meeting, walked straight to Oakes' room and just cried. I think for me it is the reality of the situation that just feels so heavy. Day in and day out, I can somehow handle everything But plop me down and talk big picture, and let me soak in just how many brainiacs are involved in Oakes' life and its just SO much.
In the meeting we learned that there was some concern about Oakes' kidneys, but you have the latest there. Oakes got a new broviac line placed last week. The procedure was successful, but it was complicated and the team is ultimately concerned that they are losing access to Oakes' veins. Several of his larger veins are either collapsed or clotted out. He could live to adulthood, and his vein system will compensate for the lost veins, but in an emergency situation, gaining access to a vein could be a disaster if they need to. But, they have the broviac now, it should last months, so that is not an issue we need to deal with now. We also talked about long term care for Oakes and feeding him. The team is in agreement that Oakes should soon get a GJ button. This will basically be a port where we can feed Oakes right into his intestines. It can go home with us, is low maintenance, safe, and we can work on teaching him to eat while he has it. Both of these issues should freak me out, but they don't. This is Oakes we are talking about after all! The last issue we discussed was Oakes' airway. The bottom line is that everyone is on board with moving forward with the biodegradable stents. I may have mentioned some of this earlier but they are not FDA approved, and are not available in the states. They have been successfully placed in children's tracheas in Europe for some time now, and even in kiddos much smaller than Oakes. The have not been used in the States at all, and they have never been used in Bronchial tubes, which is where Oakes needs them. Deep breath. So, Dr. E, and St. Louis Children's started filing paperwork on Monday. Children's has to go through a legal process, then they go through the FDA to get the stents. We have been advised that our insurance company will likely not pay for the stents. The stents will be custom made for Oakesie and they come from the Czech Republic. They take about a month to get, but we were told the process could take 6-8 weeks total. The surgeon that has been placing them in children in England is now in Austria. Dr. E & Children's are arranging to bring him to STL to place them in Oakes and teach our amazing team how to place them in other kiddos. On Friday when we had this conference, Oakes was looking great. We thought we would just go to the OR occasionally for dilation while we waited for these amazing stents to get here but things have changed now. The dialysis doesn't change anything as far as the stents go. And really, the best case is that while we are waiting for stents, Oakes' kidneys can heal a bit, which will get us home sooner. In the case that we need the stents sooner, we were told that someone might need to go to the Czech Republic and pick them up. Apparently the hospital can not do it because of the FDA, but it would be completely legal for us to go, buy them, and bring them back. We have already looked into cashing in some American Airline miles for a trip, but I have a feeling I will hear we will hear from several of you that you are ready to go on what I imagine to be a very James Bond stent retrieval mission for us! We will keep you posted on all of this.
Two exciting bits of info to share. One is that in the care conference when we were talking about the GJ button, I asked if we could at least try to feed Oakes, just offer him food, see what happens. I learned it's not that simple, but in my little Momma brain it sure is that simple. The team did agree that we could start doing speech therapy with Oakes. See if we can get those oral instincts to kick in. Elizabeth, our sweet speech therapist that worked with us when Oakes was born came by to see Oakes on Tuesday. I had brought in some breast milk (we still have a frozen stash) and we gave Oakes a taste. Elizabeth just dipped Oakes' fingers in the warm milk, he instantly brought his hands to his mouth and just smiled and squirmed and kicked around. He was HAPPY. I loved every second of it. Isla was with us, sitting in the crib just watching and giggling. She even helped to dip his fingers, it was the sweetest thing! The other bit of good news is that Greg and Isla and I are no longer under isolation, which means when we visit we don't have to wear gowns, gloves and masks!! I mean really, I'd wear it till Oakes is 65 years old, but man its going to be so nice to get rid of that junk. I am mostly excited that Oakesie will be able to see our faces and feel the skin on our hands when we touch him and not latex gloves. I couldn't keep my hands off of him this evening for that very reason.
I will post an update tomorrow as to how day #1 of dialysis goes. Thank you in advance for all of your love and prayers, deep breaths, and heart stings.
Here was Oakes over the weekend, cuter than ever!