So Much Pain

The past 24 hours have been really rough for Zachary.  He was moved out of the ICU yesterday once he was extubated and some of his lines were pulled.  But the breathing tube had caused lots of irritation in his airways, and they started filling with secretions that he just couldn't cough up.  The nurses had to stick suction catheters down his nose and throat to help clear the mucus, which as you could imagine, made Zachary very mad.   He also became much more swollen yesterday, but with an aggressive regiment of diuretics, he's shedding some of that fluid.

Zachary is starting to wake more, and when he does, he tells us that he's clearly in pain--both physical and emotional.  I knew ahead of time that his hospital stay would be very scary for him, given how he has acted around doctors and nurses since his last surgery.  If he wakes and is not in Mommy's arms, he immediately starts to whimper, and soon works his way up to the strongest cry he can muster (which isn't very strong.)  I want to scoop him up and comfort him, but the ordeal takes lots of coordination and care not to cause him more pain.  It generally involves the help of a nurse to get him into my lap, moving around his three chest tubes, central line, IV's, sats probe, oxygen tube, and heart rate monitor.

Last night and into morning was especially hard.  Zachy slept for a couple hours at a time, but when he woke it was awful.  He didn't want anyone to assess his vitals, change his diaper, administer meds, or reposition him.  He simply wanted me to hold him; he wanted to nurse and cuddle.  But soon into the night his nose was getting so stuffy that he had to breathe through his mouth and could not nurse or even suck his pacifier.  He was working so hard to breath that my heart was breaking right along with his.  In between each breath, he whimpered and moaned... clearly in pain, clearly full of anxiety.  All the while, his nurse was doing all she could to try to ease his pain, to help me catch a few hours of sleep.  But medicine will only do so much, and we were afraid to suction him any more because we found it caused his nose to bleed and create even more mucus.

This morning Zachy got so worked up that his sats dipped very low and he turned blue-- bluer than I had ever seen him.  His arm started shaking as if he were seizing, and it took a couple minutes with extra blow-by oxygen to get him to pink up and settle down.  My own heart skipped a few beats, but when he recovered  I asked if he wanted Mommy to hold him, and he shook his head "yes."  He calmed down and we decided to very carefully suction his nostrils.  The nurse pulled out lots of bloody boogers, and immediately Zachy could breathe more easily.  He kept yanking at his nasal cannula, so it was removed and we have been using blow-by oxygen to maintain his sats.  Finally he was breathing and calm enough to nurse, and has since settled into a deep and comfortable sleep.

In my discussions with the cardiologist and NP this morning, it was clear that we need to get his pain under control.  It's a fine line to walk with the morphine, especially since Zachy is having trouble with side effects.  We decided to try to bring him down even more on the morphine, stay on top of his Tylenol and oxycodone every four hours, and start up some ibuprofen as well.  He has tolerated breastfeeding, apple juice, and even some chocolate milk very well, so if his mood allows we may try a little yogurt when he wakes up.

Zachy's heart rate is still elevated, but in a normal sinus rhythm.  This could be due to pain, the recent "trauma" due to open-heart surgery, or it could mean that fluid around his lungs is building up and not draining as it should.  So this morning he will get a chest x-ray to check for effusions.

Our goal today is to ease his pain, let him rest, and get him to drink more, if not eat.  Originally my goal for him included a smile, or at least a half smile.  But I changed my mind.  I would simply be happy with fewer whimpers, happy to see him rest peacefully.