I know that there are times when our updates pop into everyones email accounts, and as they are being opened our friends and family reach for a tissue and unconsciously hold their breath and brace themselves as they begin to read. If that is you, put down the tissue and exhale, I have nothing but good news. In fact I have such hopeful news, great news AMAZING news, news that we have all been praying for!
So in Greg's last update he shared the issue that Oakes may be in heart failure. I know that I shared this several weeks ago, it has been on our radar for some time. We have been hoping and praying that this would not really be an issue that we would come face to face with. And personally, I have just not really allowed myself to think about this too much. I have learned to not fully process information like this until it is staring us in the face. I just don't have the energy or emotion for false alarms. It is still to early to say that this was a false alarm, BUT…Oakes has made some significant headway this week and the preliminary belief is that his heart is not in as much distress as we thought it might be.
Over the weekend, our friend Dr. Doctor started to wean Oakes vent. Dr. Doctor like to be aggressive, and we all know that Oakes is slow and steady so I was nervous, anticipating him to "crash", to see him go into distress, need to be paralyzed, etc. On Monday Dr. Doctor had a frank conversation with me about the heart issue. He went into all kinds of details that I won't share, but at the end of the conversation he concluded that we know that Oakes will need a valve replacement sooner than later. The donor valve that he was given in his last Open Heart is shot, but if this was true heart failure, if his ventricles were too stressed, to sick and beyond repair, we would be at the end of the road. The only fix would be a transplant and no one would agree to give Oakes one, because of how severely he rejected his lungs. The assumption would be that he would reject a heart just as severely at that would surely be too much to put him through. So the plan for the week was wean the vent, hope that he could breath on his own, and watch the drain in his abdomen. If it dried up they would assume that his heart was working better, well enough to get more blood to the kidneys to improve their function and effectively remove the need to drain fluid from his abdomen.
I came home feeling sick after this conversation. How could this possibly be the end of the road? No way. Again, I couldn't even begin to process this and I am glad I didn't. This week has been so fantastic. Yesterday, Oakes' vent was weaned completely! There was no crashing, no distress, no alarms, no paralytic, no struggling for Oakes, no disappointment or deeps sighs from his team. Oakes is breathing on his own for the first time since transplant. 105 days if you are counting! Definitely not good news, great news. Amazing news, miraculous news. Please, help yourself, stand up and do the happy dance! The Oakes is breathing dance, grab the tissues after all, take a few deep breaths for yourself and keep reading.
I have to go on about this great news. Can I dwell for a minute? Last week I shared that pesky Compliment #5 was gone. I mentioned that that was AMAZING, and it is. We can add that to the list of miracles. Since transplant I have been asking for prayers, for deep breaths, for heart strings, for all of the loving and healing that I could find for my baby, and I believe that these prayers have been answered. Compliment #5 is gone, Oakes vent has been weaned, his drain is drying and Oakes is breathing! I honestly didn't really believe this day would come. I have hoped and prayed, like all of you, but day in and day out of going up to the hospital, I just didn't know how Oakes would pull though but it looks like he is.
So yesterday, Oakes vent was weaned and he is doing well. His numbers look great, when you listen to his airways with a stethoscope they sound great. He isn't retracting, and he isn't so tired and wiped out just from breathing. Yesterday he was awake for most of the day. He was kicking his legs and flailing his arms for much of the day. He was smiling. He continues to respond to voices and touch, he has started making this clicking noise with his lips, and I am convinced that he is blowing kisses. His eyes have even improved quite a bit, they are not completely back to where they were, but much improved. In the beginning of the week his Physical Therapist, Rebecca, delightfully said, "Ok, Becky, it is time that you bring in all of Oakes toys, we need to really start working with him!" She caught me a bit off guard and explained, "I think he might be a little bored" So the next day I hauled in an entire wagon of developmental toys for our guy. My guess is that at nearly 8 months old, Oakes is where a 3 months old would be, but I am over the moon to think that my current goal can shift from breathing, to rolling over. A huge, much awaited, and warmly welcomed shift. I love you, normal baby stuff!
Moving forward we do have a few hurdles to get over, and we know that nothing goes as planned in the ICU. Even thought Oakes is breathing on his own, he is still getting pressure support from the vent. So he is initiating his breaths, his lungs are doing the bulk of the work but the vent is adding pressure to his breaths to assist in keeping his airways open. This is called Peep. Currently he is on a peep of 10. We want to get him to a peep of 8. Two weeks ago he was on a peep of 15, and hopefully we can come down to 8 over the weekend. After that he will be switched from Heliox (a blend of Helium and Oxygen) to blended Oxygen and room air, then down to room air. He is currently finishing up his antibiotic treatment from last weeks fever. We are praying that once the antibiotics are gone, the fever stays away and that is the end of that. Currently the drain in Oakes abdomen is not draining much at all. Dr. Doctor and Oakes' team believe this is an indicator that his kidney function has improved because his heart function has improved. So, next week the drain will be removed and we anticipate that his abdomen does not expand.
Yesterday afternoon, Dr. Doctor came into Oakes' room with a strern face and said, "Well (big pause), Oakes has exceeded my expectations." His delivery was dry as it usually is, and at "Well", I had already begun to prepare for a crappy conversation. As you already know, it was far from a crappy conversation. He shared with me how well he thought Oakes was doing, and the above steps that we now need to take. Then followed that with, "If we can navigate these next steps, then we are looking at going home." It makes me teary now just thinking about it, I was definitely teary then. I had to take my mask off and repeat what he had said. Coming home!?!!? I thought breathing was amazing news! Dr. Doctor had a big smile on his face and he seems so hopeful and happy for us, for Oakes, for everyone involved. And he seemed proud to share the news with me. At rounds later, I heard all of this again. Dr. Sweet, a Pulminiologist and the head of the transplant team, was on rounds and agreed that that was definitely the direction that we were heading in. They were even discussing ordering a home vent for us to get the ball rolling. They were discussing how Oakes white blood cells were up, that the B cells that we eliminated during chemo were back and healthy and the fact that Oakes will need to be given some immunizations before we go, specifically an RSV treatment. All of this was new to me, but again a welcomed shift.
So Oakes is on the road to coming home. He will likely come home on a vent, and with his trach. That valve that is not working will definitely need to be replaced sooner than later. But if he remains stable and strong they will push that surgery off as far as they can. They want him to grow, to gain weight, and to thrive. Leaving the trachea will allow us to assist him in cleaning his airway and keeping him healthy through cold, flu and RSV season. Not to mention it will be very helpful in the upcoming surgery. The surgery will be another open heart, which will require going on bypass. He has done this before, as you know, but putting his fragile little lungs on bypass now would be awful scary, no one thinks that would be a good idea. So, Dr. Doctor thinks we can get Oakes home in about 6-8 weeks, just about time for Christmas, then we would likely return in the Spring for surgery.
On Thursdays there are little conferences that happen on the floor about all of the patients. All of the team members come together and weight in on what is happening that week. Yesterday, because of the good news, and the gathering happening on the floor we had lots of happy visitors. Lots of faces that we don't usually see came by to say hi, and take a peek at the smiling, happy, breathing Oakes. Oakes was happy to have visitors, he was full of smiles, little clicking blowing kisses sounds, and non-stop moving. In fact, when Dr. Doctor left the room, I turned to Oakes with tears in my eyes and that little toot had his hands in the air over his head, looking right at me, as if he were saying, "Yes!" Mostly when we have had bad times, when things have been hard, or when we have been faced with a decision about Oakes care, Greg and I have had conversations about "what Oakes is telling us". We have discussed this with his team, we all have talked about, "If we listen to Oakes, we think he is saying…" I don't know that I have thought to ask myself this when times have been kinda good, or even great, like they seem to be now. But I think Oakes is telling us that he knew he could do it. He is telling us that he is going to be just fine. He's telling us that he is not finished, that there is a lot more to come. And I think he is telling us he is happy, he can't wait to grow, and breath and thrive and be a baby at home with his family. And I really believe that he is thankful. Thankful for the love, the support, the encouragement, each and every breath and heart sting, and SO thankful for the chance to teach us all and be a part of his life.
I look forward to more updates with more good news.
We are anticipating a pretty boring and great weekend, and we hope that your is equally as great.
We love you all, and we are thankful for each and every one of Oakes friends.
PS: A special welcome to all of your Elleinadspir.com blog readers. We are grateful to have made the list, to have met you all, and as you have read, we have so very much to be thankful for.
Thumbs up from Oakes!