Baby Ortyl: An unexpected turn of events for Oakes

Hello everyone.

Just a quick update on Oakes. Unfortunately he has been struggling, has found himself back in the CICU, paralyzed, sedated and in a bit of trouble.

Last week, on Monday I had called his 7West nurse around 7:30 am and got a good report on him. Then around 9am as I was pulling into the SLCH parking garage his nurse called to tell me that he had been transferred back to the CICU. Apparently he started working a bit harder to breath, he was retracting, he had a bit of a fever and his we requiring a little more oxygen. At the time this seemed silly to me. Since we have been in 7West he has had little "spells", but really, going back to the CI? I was sure I could talk some sense into someone. When I walked into the unit several nurses shook there heads when they saw me, as to say "WHAT are you doing here?!" and I quickly heard that as they were rolling him down the hall he was waving and all smiles. Sure enough, when I got to his room - our old room oddly enough, he was awake, pink, happy, smiling, just looking great. I thought for sure we would be back in 7West that night. We were supposed to spend Monday bouncing around on lower floors. Oakes had been scheduled to have an echo, and profusion scan, and another test that I can't remember right now, but we were 2 weeks from our discharge date and these test were going to be done before we were going to be sent home. Someone called these our 50,000 mile check-up and I did not want to miss that check-up!

When I found Dr. Oren he had already talked to Dr. Egthasady and a trip to the OR for a bronch, biopsy and lavage had already been scheduled for the following day. When Oren saw Oakes that morning he said his retracting was significant and he was an ugly shade of gray. When I heard this I agreed, OR in the morning, no 7West tonight. I convinced myself that as we were all thinking about getting Oakes home, this OR trip would be good. No one has seen Oakes' airways since December and we were due for a biopsy to check for rejection.

Tuesday OR tip seemed to be uneventful. Oakes' airways were small, but not too small. Dr. E thought they looked better that he expected. He ballooned both sides with a 4mm balloon. He started with a 2.5mm and worked his way up. Oakes' trachea looked stenosed so he ballooned that as well. He biopsied both lungs and then did a wash of the lungs too - all part of the plan. However, we found out pretty quickly that evening that the biopsy on Oakes' right lung actually left a hole in his lung and his lung was pooling with blood, and air was escaping into the space between his lung and chest cavity. Not good. Not good at all.

That tiny hole is his right lung has been creating all kinds of unwanted issues. Oakes remained paralyzed over night and on Tuesday when the paralytic was turned off, Oakes woke up mad, coughed once and filled his trach with fresh red blood. I can only imagine that having your lung full of blood is what it feels like to be drowning. Oakes was awake and freaking out, he was not moving air, again turning an ugly color far from pink, his nurse called for a doctor and respiratory therapist and they had him paralyzed in minutes with the vent breathing for him. He remains paralyzed still with no real plans to lift the paralytic anytime soon. This week also included a rash and soaring temperatures again, the diagnosis of three bugs growing from his trach cultures all treatable with antibiotics, some time on the arctic sun, an ice bath, and emergency bedside bronch, a dozen chest X-rays, a CT scan of his chest and abdomen, having a chest tube placed to allow the blood and air to drain from his chest cavity (over 100ml of blood had drained by Thursday), a blood transfusion, Oakes got platelets several times, his has been getting insulin and had consults with the infectious disease team as well as the kidney and liver doctors. This week was the opposite of boring.

So the biopsy left a hole in Oakes' right lung. A complication that can happen. It is on the consent form that we have signed over and over before. The complications are these: the blood thinner and steroids that Oakes is on daily prevents him from healing quickly. Not to mention he is Oakes, he does nothing quickly. So the hole is just there and there is blood in his lung. The vent is now on crazy high settings to compensate for the fact that Oakes is 1. Paralyzed and 2. has a hole in his lung. And this has created a pneumothorax outside of Oakes lung. A pocket of air that has collected that is actually putting pressure on Oakes lung, collapsing it and and inhibiting its ability to function properly. The vent settings are so high in fact that it is safe to say they are damaging the left lung. And the pressures in his lungs are now causing injury to his heart. It is not working properly so he is not circulating blood properly. His kidneys are not getting enough oxygen and so they are lagging big time and the doctors, up until today have been worried about his liver.

Yesterday was bad. I had a gut wrenching conversation with Dr. Gazit about what a bad place we are in. How Oakes organs won't be able to tolerate this much longer and we need to start weaning the vent. I just cried all day. And for the first time since Oakes birth I felt truly mad. Mad at the doctors, mad at the world, mad that one more thing was going wrong. And mad, when I envisioned weeks of the desktop calender just flipping by as we were taking these huge steps backwards. F-bomb.

I woke up today feeling a little better. Oakes had had a stable night. No middle of the night calls. No crazy reports from his nurse. My plan was to go in and love on Oakes as much as I could. When times have gotten hard, I have always felt better when I have made sure I have spent quality time with Oakes. So I marched in and requested to hold my one year old, paralyzed, 25 pound handsome beast of a son. I was told he wasn't stable enough and that I could not hold him. But that didn't slow me down. Oakes got a foot massage, I wiped him down, I changed his socks and bib. I played with his hair for a long time while I talked to him, then I put the side of his crib down and leaned into the crib so that my arms were around him. I wasn't holding him but we were as close as we were going to get without disturbing him, and that was fine with me. While I loved on him, his heart rate dropped ten points, so I know it was quality time for him too.

The update from Gazit toward the middle of the day was that Oakes is still very sick. He still is requiring lots of support, but they were able to wean the vent a tiny amount so that his lungs aren't taking such a beating. He has been peeing a bit more, so his kidney are responding. Test results came back that said his liver is uninjured, and they have started feeds which he is tolerating. Gazit thought that Oakes had plateaued after days of moving in the wrong direction, and said that the weans on the vent might indicate that he has improved a smidge. And we will take a smidge. I recognize a smidge. A smidge tells me that Oakes is in there, doing his thing, slowly but steadily. Thank goodness. The other important piece of information that I have to mention is that per the biopsy, Oakes' lungs are not rejecting. Deep breath.

So as this new weeks starts, please think about your friend Oakes. Please send him some healing thoughts, some love and heart strings. Please envision that little hole in his lung healing up perfectly, all unwanted fluid and air leaving his body, and the positive domino effect taking place with his lungs, then heart, then kidneys and liver. Envision lots of pee flowing. Envision him feeling comfortable, taking deep breaths on his own, not being scared or mad, waking up from the paralytic happy and refreshed. Envions us bored beyond belief and being bumped off of the floor. This change of course is going to add months to our stay, but we are hopeful that we will be back on track very soon.

I will keep you all posted as the week unfolds.
Much love to you,
Becky

ps: If you are on Facebook, you can sometimes get quick updates on Oakes through the Mighty Oakes Heart Foundation Page before the more detailed posts show up here.