Last night, I had a sore throat...the kind of sore throat that says, "You are officially doomed for a lovely cold." I was so frustrated, I but knew that I really needed lots of Vitamin C and some real sleep. Billy escorted me downstairs, and a security guard walked me to the Ronald McDonald House where I promptly fell soundly asleep.
This morning, the sore throat is not gone, but I have had thousands of milligrams of Vitamin C and am hoping that this will pass without developing into something ugly. Getting sick right now would be really bad timing.
So I arrived at the hospital with a cup of hot tea and found that Will had had a pretty difficult night. The secretions from the trach are causing him a fair amount of grief, and at one point, he just could not clear them from his airway. The respiratory therapist on duty last night was wonderful and stayed and worked with Will til things were more stable.
Overall, Will has had a better day and is slowly coming back to life, but the pain medication issues have been a challenge. They switched him to Dilaudid yesterday, still a narcotic but longer lasting than what he had been on. However, upon administering it in his IV, he complained of about ten seconds where his whole body felt like it was burning. Then he broke out in hives which lasted about 45 minutes. They then switched his med again, to an oral liquid med, but again he had hives. So the pain team was once again called.
The doctor in charge of his pain meds basically stated that unless Will's reaction was anaphylactic, then we should not list the reactions as allergic. They are frequent side effects that can be treated with an additional drug. My only concern is that if his body is utilizing energy to deal with a reaction, then that is energy that he doesn't have elsewhere. Since his body doesn't make sufficient energy on a good day, do we really want to present him with an additional challenge? Ah, the joys of specialists who see only their specialty.
So, we did give Will the pain med in a pill form, hoping that the reaction may have had to do with an additive in the liquid. So far, he is doing well. He is struggling with belly pain, but that could be his gut waking up. (Anesthesia slows the gastric tract way down.)
So, tonight, I am being once again sent to the RMH to sleep in the hope of not becoming truly ill. Billy is doing an amazing job helping Will with his trach and in general care. No 14 year old boy wants his mama to help him to go the bathroom.
In general, Will is doing better. There are still plenty of challenges that need to be addressed before we can leave the ICU...things like actually eating. He is still on tpn which is basically nutrition that they administer through his port. There is also the pain management issues as his pain is an ever moving target. Also, as the fluids from surgery leave his body, and his pain lessens, we will need to watch his blood pressure to ensure that it remains stable.
Becky R brought us an amazing dinner, but we hardly got to see her as she arrived as the pain team and the orthopedic walked in.
So, that is our day in a nutshell. Each day should get a little easier...Tomorrow we will hopefully conquer some food issues, which include learning how to swallow food down the right hole. The trach changes the pressures when you swallow, and his palette now has a different shape, so that affects eating and drinking. Today he conquered drinking which was huge. (Think about how you drink through a broken straw. That is somewhat the way he is having to function...)