Yesterday, Colin was extubated successfully. One of the sedatives caused him to generate a lot of secretions, so his breathing sounded very juicy and uncomfortable. He moved his legs constantly and didn’t seem to settle. It was disconcerting to watch but the doctors were unable to give him anything stronger than Tylenol for fear of suppressing his respiration.
The experience of watching him in such discomfort generated unimaginable anxiety, perhaps because it was a very immediate phenomenon in front of us and there was little to nothing that we could do.
Most importantly, however, he was able to protect his airway and keep secretions from going down his throat. This was a critical milestone for him and means that he does not have to have a trach tube (yippee!).
Another concern was his urine output and content, which had dropped and was possibly indicative of a surgical problem related to the hypothalmus. This was being closely monitored and his urine output measured carefully.
Interestingly enough, over the course of the afternoon, Colin’s discomfort resolved because of two factors. First, the sedative wore off and he stopped secreting so much, making it easier for him to breathe. Second, the nurses discovered that his Foley catheter was somehow blocked, meaning that he was generating urine but not able to get it into the bag!
They noted that his bladder seemed distended and were unable to flush the catheter line. Three nurses hovered over him trying to figure out how to get the catheter to work, sorting through various bulbs, syringes and catheter kits to find the right equipment to clear the line.
Finally, they pulled it out and he promptly started dribbling. The resulting effluence relaxed Colin and he promptly fell into a comfortable sleep. No wonder he had been squirming!
Fortunately, this also means that his urine output was not as depressed as they had feared and there is no major problem related to his sodium/urine balance. They are still monitoring it, however, and ended up reinserting the catheter for close measurements.
Another piece of good news is the fact that the other half of Colin’s waste removal systems is in good working order. Although he hasn’t eaten since Monday (poor baby!), he did manage to poop several times during the day on Thursday.
Colin remained sleepy although began to awaken a bit more. He has been responsive, will listen to commands, and wanted Mom to snuggle with him on Thursday night. His arms are working pretty well, since he managed to stick his left hand down her shirt. Even though she was unable to provide the customary comfort (milk is accumulating gradually in the NICU fridge), it was still nice to be close.
Friday, Colin had the highly anticipated swallow study. This was performed in a room with a special X-ray machine that takes X-ray video of the patient swallowing a barium-infused mixture (freaky!). In Colin’s case, we started with apple juice.
Mom, heavily garbed in lead, fed him a tiny bit of a white concoction of apple juice and barium. Unfortunately, he was unable to swallow the mixture safely without some getting into his airway. His failure does not necessarily indicate a strong neurological deficit but may also be due to throat swelling from two days of intubation as well as overall lethergy from two days of sedatives.
For this reason, they will redo the test on Monday to see if he will do better as these known temporary effects wear off. We obviously hope that Colin is able to swallow and enjoy one of his favorite pastimes. He is now showing some desire to eat and looks jealously at food.
When the nutritionist comes and advises us about how much he should be receiving, we will put in a nasal gastric tube so he can be tube fed safely. Not nearly as enjoyable as what he’s used to but better than an empty and growling tummy!
In the meantime, Dad is bringing Aidan to New York so the whole family can be together. Aidan has held up well but is showing signs of stress from being separated from everybody. The Ronald McDonald House, where we now have a room, sponsors a day camp for kids (including siblings) that Aidan will be able to participate in next week. The activities are fun and he will have a great time staying there, where there are lots of kids and fun things to do.
We are happy that he enjoyed art camp but realize that this isn’t enough of a distraction. Perhaps more importantly, we do not want to rely on distractions to sustain him through this time. Our family is unable to live a “normal” life at the moment, but we can do some normal things. Also, cancer is a normal phenomenon for the families living at the Ronald McDonald House, which will help further demystify our experience.
This is true for Aidan but perhaps equally true for Mom and Dad. With a long road ahead of us, we look forward to the opportunity to stay there again when Colin receives chemo treatments. There are lots of kids there with shaved heads or no hair, and the policies are designed to support immuno-suppressed patients. We plunge into our new normal.