PICU, Day #18 (pt 4) – Trudging forward

Today just sucked.  No other way to describe it.  Can’t even say it was a roller coaster type of day because it wasn’t.  It was just tough, emotional, and painful.

I found out that her night last night was absolutely horrible.  She was so angry and agitated from being weaned off the sedation meds that apparently she threw up a number of times, and her wrists became red from wrestling against the restraints.  The nurse decided against calling me last night because she did not feel I needed to see it, and truth is, Hannah does not recognize me as Mommy right now.  Maybe that is the reason I woke up at 1 am last night and could not fall back asleep until 4 am?

It is so obvious to me that Hannah is going through withdrawals from the narcotic sedation they have been given here.    I’m not the only one it is obvious too, but I can’t say who else agrees with me on here, but there are at 3 people in the medical field who also agree.  I also came to find out later this evening that seizure medications (she is on Keppra now) also may have a conflict with sedation meds.

ARGH!!!!!!!!!    In my heart, I truly believe she did fail extubation in part because she was still dealing with all the drugs in her system.  She was shaking horribly during the time they took the tube out (withdrawal type), and she just never really got a hold on being comfortable.

I thought about it, and when they first extubated her, her lungs were still junky, she still had pneumonia, and she lasted a good hour before the problems started (being reintubated 2-1/2 hours later).  This time, her lungs were clear, the pneumonia was mostly gone, and she did not even last 10 minutes before the breathing problems started.   During her first extubation, she was still a bit shaky and spastic, but it was not anywhere near as bad as it has been in the past week.  In my head, that tells me that the meds are a good part of the problem.    We know from her ear tube surgery a few weeks ago that she can undergo general anesthesia without any problems and that her airway is good.

Regardless of the reason she failed, meds and/or airway issues, she needs a trach.  That is a given.  The difference is that if it is sedation-related that we can revisit this in a few months to see if she still needs a trach.  If it is airway related, well then, it was time.  Since Hannah is a bottle-fed baby, and a messy one at that at times, we decided we need to go ahead with the gastric tube so we have an alternate feeding method to make sure she gets her calories.

Dr. Roy came by to visit again tonight.  We talked for a while, and he had scheduled that his partner do Hannah’s trach surgery tomorrow.  He is going to try and be involved in it, but with his schedule, just even offering to try is a wonderful gesture.   I found out after he left that the “catch” is whether they can get the pediatric surgical team to do the G-button at the same time tomorrow.

I’m frustrated, incredibly frustrated.  I shared my frustration with her attending (our third one in the PICU, and the first one who I feels actually listens to me).  She also believes that the ‘sedation nightmare’ issue may be involved with her failed extubation attempt.   That was the reason she was considering a bronchoscopy to be done in the OR — to see if the airway was damaged for whatever reason or if it was neuromuscular in nature.  Dr. Roy nixed that idea because regardless of the outcome, she is going to need a trach at this point to get her through this — whether it is permanent or temporary.   There is no reason to put her through anything she does not need if it does not help the outcome.

So, we will see what happens tomorrow…