One of the oral meds he's taking is Nystatin, which is supposed to help prevent thrush forming in his mouth since he's on such strong antibiotics. He's getting Gentamicin through today, which will complete a week of that IV treatment. His Vancomycin will run another week, and as long as he seems to be healing without any recurrence of the infection, Dr. Bradley is hopeful we can go home without the PICC line or anything. But the nurses and I were wondering if his mouth is sore because of these strong IV meds, and that's why he's become adverse to his other oral meds and bottles. Of course the side effects of all these drugs raise huge questions in my mind as to the long-term effects, but when I spoke briefly with some of the cardiologists about them, it seems we really don't have a choice. The pertinent problem right now is the infection, and even if the antibiotics were causing other problems, or will cause them in the long run, we need to use them...
So I gradually introduced some breastmilk in a bottle with one of his favorite nipples from home, and throughout the day, he did accept small amounts from the bottle. He's continued to have good diapers--sorry for all the gory details but it's part of the hospital world, yes they weigh every single one here--as far as urine output, but hasn't had a bowel movement since Sunday. :-( I feel if he can take some formula to supplement the milk I'm making it will help him be able to go to the bathroom. In addition, he'd lost a little weight when they weighed him for admission to the recovery floor, and he's already on the small side.
He was quite happy all day, but not wanting to sleep at ALL. By midafternoon he'd slept only about 45 mins and I thought, well, maybe that would help him have a good long night of rest. When the doctors came to his room for their daily rounds, they said they would do their best to make it as much like he was healing at home as possible. For this I am VERY thankful.. the staff here are so kind and thoughtful for the most part, but this floor is notorious for interrupted sleep at night.
Even though I explained to his night nurse that I really felt like it was important to let him sleep and that I would come get her whenever he woke up to eat, she said I had to wake him up at 11pm to give him meds. So we got vitals then, but she still felt it necessary to shake me awake at 4am after I'd already been up with him several times to remind me it was time for vitals again. I told her I would come get her--as previously discussed--when he woke up, and tried to go back to sleep myself...only to have him wake up at 4:30...grrrr. His IV machine also beeps at high volume whenever it finishes a dose of the medicine, then has to run a flush, then beeps loudly again for the nurse to change it back to the regular heparin flush that keeps his PICC line open.
When I discussed all this with the drs., they said we could do no vitals after 8pm, yay!, take him off the constant monitoring system, and just do spot checks of his BP and saturations. Great news- because trying to untangle him from all those leads and get him out of the bed every time he needs to eat is quite a production. He's still attached to the IV and the drain, but that's a breeze compared to the rest of the wires! Also they said by the time he goes home he may be able to get off all his lasix. He has been on this since birth, so I would be thrilled to reduce the number of meds he has to have on a long-term basis.
So late afternoon he started to get really fussy, then he made a dirty diaper--hooray! He fussed most of the evening, and still had not slept more than 45 mins all day. He seemed very uncomfortable and was crying whenever we moved him, pulling at his incision and grunting when he breathed. I asked the nurse to go ahead and give him some pain meds, and thought surely he would be worn out enough for us both to get a good night's sleep.