It is Friday evening, and simply put, this has been a really tough week. Oakes has remained paralyzed all week. Each time they have lifted the paralytic it has been so upsetting to see him struggle, get mad and work so very hard to move air. After about twenty minutes he has been reparalyzed each time. That is, until this morning. He has been unparalyzed since about 8:30 am and is doing great. As you read on you understand how welcomed this has been.
On Monday, Oakes went to the OR for a balloon dilation with Dr. H. Everything went as planned but as I mentioned then, he needed to be paralyzed that night in order to breath. Good news about the OR but so heartbreaking to have him paralyzed.
On Tuesday we learned that Oakes has a hypoactive thyroid. They do not know why, but this could be effecting his left heart, and possibly his kidney function as well. He was started on meds that day to help his thyroid.
On Wednesday afternoon, Greg and I sat in a Care Conference with Dr. Oren, Dr. Huddelston, Dr. Michelson and Nicky, one of our nurses. Over the past week we have been visited by all of these doctors individually who kind of gave us the 'talk before the talk' so we weren't expecting any surprises in our meeting. However earlier that day some blood work and an ultrasound had been done on Oakes' kidneys and the results came back right before our meeting. Basically Oakes' kidneys have taken quite a hit in the last 2 months. They show scaring, the anatomy of the kidneys is not normal and the Kidney specialist that we spoke with said it was clear that the kidneys need more blood flow. We were told that it is likely that Oakes will need dialysis in the near future and possibly will need a kidney transplant.
This news seemed to be too much. How could Oakes, who has already pulled through so much get through this too? Greg and I were tearful, Nicky was tearful, and the doctors were definitely upset too. We were told that the longer Oakes stays in the ICU, the lower the chances are that he will get out. And with this news, the odds of getting him home are getting smaller and smaller.
As you can imagine, Greg and I have felt crushed, overwhelmed, and just so sad for our sweet boy.
Then, as he has done before, Oakes started surprising everyone. On Thursday he peed over 300ml plus extra fluid drained from his abdomen. When I got in this morning I could not believe how great he looked. No more puffy baby, just super, adorable, cute baby Oakes. Then at 8:30am his paralytic was turned off, and he was able to hold his ground all day. He got agitated a few times, but was able to calm down and his numbers stabilized. The doctors and nurses were tip-toeing around his room because EVERYONE wanted him to have a good day. And he did. Dr. Michelson even commented that Oakes has not looked this good in 2 months, and I agree. About mid-day I started talking to Dr. Oren about the kidney issue, just wanting to understand better and he quickly and excitedly shared that the amount of pee that Oakes produced in the last 24 hours changes everything. He said that all of that pee shows that his kidneys are doing much better than they had thought. He said that the kidney doctors will continue to follow Oakes, but his kidney function is not a huge concern right now, like it was days ago! I could have peed in my own pants I was so happy to hear this. Prayers for PEE answered.
So it is 8pm and I am propped up in bed typing this. I feel like I ran a marathon this week but I know this update is overdue.
This week we will pray for more pee, constant pee, unending pee. We will continue to pray for healing; healing lungs, healing heart, healing kidneys, healing thyroid. We will pray for peace for our entire family, as we are all a bit pooped. And we will pray for that special girl down the hall who received new lungs and is battling her own amazing fight right now. I can almost see the vortex in her room, but hope that we can all add to it. I have been in touch with several of our CICU friends this week and I have to ask that everyone continue to pray for these friends that have lost their sweet children; Sweet Elizabeth, Ronan, Noah and Gus.
Hug & Tugs, Becky
Booties knit by Oakes' night nurse Emma, she left them in his crib Sunday night and we found them Maonday morning.....Thank you, Emma!
...and our sweet but Mighty Oakes!