Fair St. Louis was in Forest Park this year. Lucky for us, Sutton's room just happens to overlook pretty much the entire park, so we opted for family fireworks from the hospital. We didn't end up seeing much of the fireworks because (1) Cohen was, understandably, less than willing to sit still after a long car ride back from Michigan and (2) Sutton seemed to have some secretions he just couldn't get loose and cough up. Due to his history and the fact that he has recently had several surgeries on his neck, he has been labeled as a difficult intubation. He has a big green 'AIRWAY' sign hanging above his bed. We have been informed he is actually an easy intubation, however there is concern about further damage to his neck and esophagus if reintubation were necessary. In an effort to prevent such damage, ENT and anesthesia are paged at the first sign of concern so that they can be the ones to intervene, if necessary.
I say all that to help explain the past few nights. Up to this point, no calls to ENT or anesthesia for such concerns have been necessary. However, in the past 48 hours they have been called 3 times. He has been retracting (or pulling in when breathing - this happens when someone is needing to work much harder than is typically necessary to breathe) since extubation, but everything else was within normal limits. So, we have just been observant of whether he has been working harder, about the same or not working as hard to breathe.
On Friday evening it seemed as though he had some secretions stuck and was having difficulty moving them. His vital signs were showing that he was no longer compensating and was having increasing difficulty breathing. Page #1. He finally was able to clear the secretions and he got a breathing treatment. They also made some changes to the medication he has been getting to help decrease how frequently we are needing to suction him because it can make secretions much thicker and more difficult to cough up.
Saturday morning we encountered a similar issue. Plus he vomited a bunch of his tube feed. A little spit up can be a big problem in someone that cannot currently protect their airway. Page #2. He got another breathing treatment and no changes were made to his meds.
We took Cohen to a get together with some friends Saturday evening and then dropped him off nearby for the night. When we returned to the hospital there were a bunch of staff members at his bedside. That's never a good sign. He hadn't really done anything markedly suspicious at that point, but his nurse just felt like things weren't sitting quite right. His vitals were still within normal limits, but they were off for him. Page #3. Let me interject here to say that this is one of the many reasons we opted for COBRA so that we could keep him at Children's with the physicians that have been with him since birth. The care we have received during this visit and when he was in the NICU has been the best care with the most well functioning, genuinely kind and caring, knowledgeable body of health care team members I have probably ever seen. It takes much of the tension out of an already unnerving situation. Anyhow, the same interventions as incidents one and two were employed. The night was long and restless and by morning he had been put back on oxygen. No good. A little oxygen is no big deal in and of itself. However, he's been working extra hard to breathe for just over a week since extubation and an increased need for oxygen could also be a sign that he is tiring out. This could result in a need to be reintubated.
This morning, we had a long discussion with ENT about his slowly declining ability to compensate. A chest x-ray showed no major signs of aspiration, though many of the secretions we are suctioning very obviously have tube feeding in them. His feedings are currently being held to see if that will spark any improvement. If that seems to help he will be moved back towards goal feeds at a slower rate. The medication for his secretions was adjusted again in the hopes that thinning them out a bit will take some of the work out of clearing them. A respiratory viral test showed no signs of infection, so they ruled that out as the root cause of these problems. And then the elephant in the room: a trach is not off the table. Unfortunately, it has been removed from the (very far) back burner we had placed it on. It is not a decision we are needing to make right now, but if he doesn't start to improve then the topic may be brought to the forefront. Our ENT has worked very diligently with us over the past year to keep this from becoming a reality so she isn't going to rush into this as an option, but it has become an unwelcome topic of conversation again.
This was also disappointing because prior to these episodes starting we were simply med weaning. Once he made some progress there we were headed home. Now we are looking at a minimum of another week here. And, honestly, I don't want to take him home like this. I can't possibly provide the kind of safe care he needs 24 hours a day. He must never lay flat, even to sleep, and he has to be suctioned frequently around the clock. Not to mention he can't take anything by mouth and we have a 3 year old at home that is accustomed to sharing meals with and offering food to his little brother. These needs are only compounded by the fact that 3 weeks ago he was running around like a 'normal' one year old and now we are trying to contain him to a bed and make him follow rules. This has been a near impossible task. There was even a possibility of working with speech therapy tomorrow with some puréed foods to see if he could tolerate them. Not anymore. Now he isn't even getting the lousy tube feeds.
If you can't tell, this is all very frustrating. One minute we think we're on our way out the the door and then the door is slammed. Kedric and I have been encouraged with compliments of how well we have been handling the situation and the curve balls that have come our way. But, as I've heard many other parents with sick children say, we don't have any choice. If it were up to me this wouldn't be any part of our life. I think the struggle for me right now isn't each individual thing that goes wrong, because we can handle them one by one. It's the fact that the past year at our house has been relatively normal with a few very minor exceptions. Now it's not like that. Now he can't eat or drink. Now he can't sleep in his own bed on his belly like he prefers. Now we could end up going home with much more than a feeding tube. All of this with a new baby coming in November. Talk about stressful.
A little bit of good news in all of this is that the drug wean seems to be moving along without incident and Sutton has quickly regained some of his usual spunk. He also seems to be regaining some of his strength and muscle control. For these things we are very thankful!
Please don't misunderstand, I am so unbelievably grateful for the progress he's made up to this point and for our ability to have been pretty normal over the past year, but my optimism for the current situation seems to have reached its max. Hopefully a restful night will lend me some better perspective.
"Even the darkest night will end and the sun will rise."
These are far from the darkest nights we've encountered, especially related specifically to these last few weeks, but my patience, peace and perspective are wearing very thin. I want to go home. I want Sutton to be out of the hospital. I want to leave this very difficult chapter of our lives behind.
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