Hi family….I’m emailing you all the latest with Oakesie, but will copy blog so others can get an update here.
As some of you know, Oakes has been having “fits” the last few days or “episodes”, as the hospital staff calls them. These episodes are occurring as Oakes is waking up from his paralytic medicine. Eventually, as he wakens, he starts to fuss and his face will turn red and his numbers will degrade (oxygen levels go down, heart rate goes up, blood pressure goes up). They typically have to give him more paralytic and suction his throat/airway and he calms down, usually, after a few minutes.
This is not good since the doctors want to get him off the ventilator asap and want to see how he does with his new lungs. Well, these episodes have slowed this process down obviously. After several days of this, they have started to call these episodes “bronchial spasms”. These bronchial spasms are similar to what you’d see in patients with asthma, but they know it’s not asthma since the donor did not have asthma. Apparently, Dr. Huddleston and others have seen this in infant lung transplant patients before (remember, no one has done more in the world than Dr. H). The problem is, they don’t know WHY it is happening which, of course, is disconcerting to us. So they are in the process of eliminating reasons why these spasms are occurring.
There are many reasons they could be occurring – some type of allergy (which we think caused his rash earlier in the week), some type of rejection of the organ, possibly something restricting the airway in the bronchial tubes or maybe some inflammation where the new bronchial tubes were sewn to the old bronchial tubes. The allergy reason seems odd since he had most of these medicines after previous surgeries.
Step one – bronchial exam tomorrow morning to see if there is anything restricting him. For tonight, they plan to keep him completely paralyzed since they’re not sure what might be wrong. Dr. Huddleston stopped by about 7:30pm and filled me in on all of this, which was helpful because this has been confusing, at best, for Becky and I to understand fully. There have been so many medication changes and tweaks to his ventilator and different theories that we sort of lost track as to what the core issue was and how they were treating it.
Dr. H thinks we’ll just have to ride it out a bit while we figure out what might be causing the issues. In the meantime, his five-day plasmapheresis treatment is over. When they tested him today, they saw that his antibody levels are about “normal” for a baby his age, which is awesome. However, the next week is critical to see how his body produces antibodies. The hope is that it will produce a normal or only slightly higher than normal amount. If his body produces a significant amount of antibodies in an attempt to combat the lungs, we’ll have another issue to deal with.
That’s the quick update. Love you all.
Greg, Becky, Isla P & Mighty Oakes
The Mighty Oakes Heart Foundation