Over the weekend very little happened which was incredibly frustrating. Certainly I understand it was a holiday weekend, but a hospital is a 24/7/365 atmosphere and if a physician is not prepared to work in such an environment then he or she should not have gone into the field they did. It is crazy to me that we had to wait until Nicholas's pediatrician was back Monday to start getting answers. It's also incredibly unfair to the patient. The longer he was in the hospital, the longer he was away from his family and the greater chance that he could be exposed to something, making him even more sick than he was.
They reduced his feeds to 30 ml/hour for a full 24 hours. This was to ensure that he received full nutrition without causing him the pain that the feeds seemed to cause. He tolerated this, though we didn't really care for the solution and his pediatrician agreed. They were treating the symptoms rather than determining the true cause of the problem.
Monday morning, the PA who works directly with the neurosurgeon we see came in and looked at Nicholas. They decided to turn his shunt from a pressure of 50 to a pressure of 60. This should lessen the drain of CSF from his brain and hopefully help to relieve some of the belly pain causing feed intolerance. Monday was the worst day. When I got to the hospital after work, I was told that Nicholas had moved from needing Tylenol every six hours to needing it every four hours. At around 8 p.m. as I was packing up Zachary and Emily to leave (I stayed long enough to meet the night nurse and then had to take the other kids home), Nicholas started crying and became inconsolable. His heart rate was skyrocketing and it was clear he was in pain. I got the nurse and a decision was made to give him a suppository since he hadn't had a bowel movement all day and also to give him 1 ml of ibuprofen. I was very worried because I've always been told that you shouldn't give an infant under six months of age ibuprofen but the nurse reassured me that it was such a small amount it shouldn't affect him at all. After the suppository (which worked fantastically) and the ibuprofen, Nicholas calmed back down and went back to sleep. It was only then that I felt comfortable leaving.
Tuesday, the pediatrician told Mike that we would have answers today. The neurosurgeon rounded on Nicholas's floor and saw Nicholas. He determined that he was going to back out of the care of Nicholas since the shunt appeared to be working correctly. Since the neurosurgeon's place of expertise is the brain and the placement of the shunt, it was appropriate for him to give up the lead role in Nicholas's care once he determined that his area of expertise was working properly. I was still incredibly angry and frustrated and ended up leaving work to go to the hospital early in the hopes of meeting with some of the physicians. I was prepared to go full mama bear. The pediatrician ordered a STAT belly ultrasound since the hard spot on Nicholas's belly hadn't been looked at since Friday when he had the ultrasound and CT scan. Nicholas's nurse from his pediatrician's office came up to the room to meet with us, and listen to my complaints. Ultrasound came up and then we waited for the results. Nicholas's nurse called the room to let us know the pediatrician was currently seeing an outpatient patient in clinic, but they would be up shortly. She called again about an hour later to let us know that he had been held up, but was on his way now. He was going to stop by radiology for the ultrasound results and also consult in the general surgeon who had placed Nicholas's g-tube and done the nissen but he was on his way to talk to me.
The ultrasound revealed that the spot was virtually unchanged but confirmed that it was, in fact, a pocket of cerebral spinal fluid in between the layers of the skin. The pediatrician told me that the surgeon had promised to stop by and talk to me before he left for the day. He asked the nurse to call the surgeon if he hadn't appeared by shift change at 7 p.m. The nurse assured me that she would call as soon as the pediatrician left and not make me wait until 7. As the pediatrician walked out of the room, he ran into the surgeon and the surgeon's resident, so all three came in and a 45 minute discussion ensued where I got all of my questions (and some I didn't think of) answered.
The surgeon assured me that the pocked of fluid was nothing to be worried about and that it was causing Nicholas absolutely no pain or discomfort. He told me it was like a room with one door and when Nicholas was upset or pushing for some other reason, the fluid all rushed into the room and none could get out because the door was occupied. He proved to me that there was no pain by pressing on the site to remove the fluid from the pocket. Nicholas didn't even whimper. He said that he didn't recommend surgery for the spot at this time because fluid has a funny way of being able to get around stitches. He said that Nicholas basically felt like he had the worst hangover he would ever experience because of the pressure change. He said he would be grouchy and irritable and likely not wanting to eat because he felt terrible. Pressure changes did this, and should he ever need the pressure changed again, we should expect it. I verified this information later with my employee who has hydrocephalus and a shunt and she agreed. She said whenever she's had pressure changes she has felt horrible for about a week. After speaking with the surgeon, I felt much better about not going forward with surgery and also with the ultimate outcome of this situation.
It was decided that we would try to reduce Nicholas's feeds from continuous to being fed over a period of two hours and off two hours. The pediatrician didn't want to send Nicholas home on continuous feeds if we didn't have to. Wednesday, they reduced him to feeding over two hours and Nicholas tolerated it like a champ. He also went the entire day without taking Tylenol once. I got a call from Mike in the early afternoon and he told me that their goal was to get Nicholas discharged home by 8 p.m. I was ecstatic. If he tolerated all of his feeds before then, they felt comfortable discharging him. When I got there he had just finished a feed, so his next feed would start at around 4:30 p.m. If he could tolerate that, he would go home. As 6:30 p.m. rolled around, the nurse came in with the discharge paperwork. I was packing the room as they unhooked him from the feed and by 7 p.m. we were saying goodbye to the nursing staff and heading towards the parking lot.
We have since moved his feeds from over 2 hours to over 1 hour. Before the shunt adjustement, he was eating over 30 minutes every four hours, so we're hoping to move the feeds back to that schedule soon. He has a follow up with his pediatrician tomorrow but is back to the happy and sweet baby that we have known until the shunt adjustment. He's talking and cooing again, smiling, kicking... Basically doing all the baby things he's supposed to be doing. And it's much nicer to be spending our time at home (or at Zach's taekwondo studio) rather than at the hospital.
If Nicholas has taught me anything, it's to expect the unexpected and to roll with the punches.
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