So test results came back from blood drawn on Monday and they, unfortunately, were more of the same. Some antibodies were gone, some elevated and some new ones. We were so hopeful that the results would have been more dramatic after all of the chemo and meds this past week or more, but not the case. Again, not great news, but not bad news either.
When I got here this morning I was told the test results and also informed that the team wanted to get a biopsy of Oakes' lungs to see if the rejection is at all under control. We have been told several times that clinically, they believe that Oakes is doing better. He just looks better, he has tolerated the vent being weaned, been tolerating feeds, peeing more, etc, so hopefully this biopsy will reaffirm that clinical opinion that everyone seems to have.
The biopsy will happen here in the room very shortly. I am praying that tolerates the procedure and bounces right back. When Oakes had a biopsy a week post transplant it was the day that he was over doses and then really struggled to stabilize. He is much stronger now, and his lungs have had almost 3 weeks to heal, but there is still a little uneasy feeling in my stomach.
I just had a little chat with my man and explained what is about to happen. I explained that he will be sedated and paralysed for the procedure, but once it is completed he will start to get milk again (feeds stopped at 8am - in case he is at all food motivated like his sister). I explained that I will be here in the room with him, and even though I suspect that is comforting I suggested that he go far away to his happy place. I asked him on an itty-bitty cellular kind of level if he would please halt the full antibody attack on these new beautiful lungs and healthy veins and welcome them to his adorable little body. I assured him that everyone will be praying for him, sending him deep breaths and tugging on their heartstings. And can you guess what Oakesie just did...he smiled in his sleep! I love you Oakesie!
Will post an update as soon as everything wraps up! XO, Becky
9pm update: The procedure went well. Oakes is resting and stable. Oakes was sedated and paralyzed for the scope as planned. His numbers looked good throughout the procedure. I just got off of the phone with his night nurse and he is still sedated and not moving. During the scope his doc got several nice sized tissue samples. Results should be back in about 24 hours. Before the procedure I spoke to his Pulmonolgist for awhile. I asked if he could clarify why they decided to the the scope today. He shared with me that they are trying to better understand what is happening with Oakes. Like mentioned, clinically he looks good, but his blood work keeps showing antibodies. He suspects that the antibodies that are present are good ones, or ones that are not attacking the new lungs. The lung biopsy will let them look at the cellular structure of the new lungs to see if they look more healthy compared to the biopsy done about 3 weeks ago. So these will be more definitive results to tell us if the rejection in being controlled.
A few other things: Earlier today Oakes Pulmonologist shared with me that rejection of some sort is expected in lung transplant patients. With Oakes, because his antibodies levels were so high pre-transplant they knew he would reject, they just didn't know how soon or how severe. All of this had been shared with us pre-transplant. So today, he explained that first we want Oakes to tolerate his new lungs on an antibody level. Then later, we hope that he will accept them. As he was talking I thought, Oakes and lungs aside, what wisdom, what a great life lesson....to be more tolerant and accepting.
Secondly, I ran into Dominic's father today. I mentioned Dominic months ago. At least I think I did. In either case, Oakes and Dominic were roommates in 7W before we came home the last time. Dominic is almost two, and had a lung transplant about 11 months ago after being diagnosed with pulmonary vein stenosis, exactly like Oakes. Dominic has 2 siblings and a loving mother that live in Michigan. Dominic and dad have been here on and off since his transplant. Anyway, they were supposed to go home on the same day that we brought Oakes home (nearly a month ago), but they have been here ever since. Dominic has been in the PICU (Pediatric ICU) since leaving 7W. His dad shared with me that for the first time ever, Dominic has been receiving pheresis. He is on his second treatment in the last two weeks after his team saw promising pheresis results from " a little lung transplant baby in the CICU". It took seconds for Dominic's dad and I to put the pieces together, but that baby was our Oakes! It was SO touching to think that the knowledge gathered from Oakes positive results on pheresis is now benefiting another child here, especially our little buddy, Dominick. And according to his dad, his numbers are all improved and he is responding very well to pheresis. Deep breaths and heartstings to little Dominic and his family!
My heart is warm. My body is exhausted, I am going to crawl into bed and will do this all again tomorrow.
Love to all of you, Becky
Loved Oakes in my arms! (Thank you Yvonne & Sarah, you made my day!)
Tissue samples labeled and on their way to the lab.
Those tiny red flecks are the tissue samples. They were about the size of pin point- itty bitty!