The next morning, at 6:00 am, a neurosurgery resident came to check the back of Collin's head because of the agitation. I told him he could do so only if he could do it without waking Collin up. Luckily, he didn't wake him. I told him my gut wasn't telling me the agitation was from hydrocephalus this time because there were no other neurological signs, but maybe it should be checked anyway. He said he would discuss it with the neurosurgeon. Then at 6:50, the door to our room opened, and I heard something being pushed through the door and banged into the wall. Collin picked his head up, and I was furious. A lady pulled back the curtain, and started to push a cart into the room. I stood up and said, "What are you doing?!" She said she was the audiologist and was there to do a hearing evaluation. "At 7:00 in the morning?!!" She told me she wanted to do the eval while Collin was asleep. I said, "Well he's not now!!" Then I mumbled that I was glad I hadn't been getting dressed, because that was normally the time I am getting myself ready for the day; I think the lack of privacy at all hours of the day and night finally got to me. For the hearing eval that was done before the first round of chemo, we had to go all the way across the hospital to a connected building to the audiologist's office because they said there was too much noise in the room to do it at his bedside; now they were coming to the room to do this one. It didn't make sense to me. She explained that it was important to monitor his hearing between rounds of chemo; I told her I understood that perfectly, and that I was sorry to take my frustration out on her, but that we had had a rough few days with not much rest, and I was tired of Collin being woken up all the time. She sympathized, and apologized again. She did the hearing eval, and got the same results as the last eval; no problems with the left ear, but she couldn't get a good read on his right ear, which she felt was probably due to fluid in the ear.
Now that Collin was awake, the restlessness and agitation started up again in full force. He was given another dose of Ativan. I showed the video of him the night before to the nurse practitioner, and she realized that the agitation I had been seeing for the last few days was not normal. Then his oncologist observed it first hand, and she decided to have another MRI done to see if the agitation was due to any new tumor growth; if the MRI showed nothing, she would talk to the psychiatrist about starting another drug to help get him through Morphine withdrawal. She also had another X-Ray done of his belly to make sure he didn't have an obstruction or anything else that was preventing him from having a bowel movement, since he hadn't had one in a few days. The MRI was scheduled for 1:00 pm. All morning my Mom and I watched Collin cry and thrash in agony; I told her it was like he was trying to crawl out of his skin. Words can't describe how agonizing and heartbreaking it was to see him suffering like that, and I was angry that it had taken so long to convince everyone that it wasn't just frustration that I didn't want to deal with, but that rather something was really not right. I even (only half jokingly!) invited the nurse practitioner and doctors to spend the night with us so they could have a turn helping Collin get to sleep.
On Wednesday, the decision had been made to pull the feeding tube up into the stomach from the intestine and make it an NG tube. The goal was to normalize feeding a litle bit; he could have some continuous feeding overnight, but then during the day be given 3 bolus feeds, that would take about an hour each, more like a breakfast, lunch, and dinner schedule. That way he could be disconnected from the pump at times during the day, and he may also be hungry enough to try eating orally. We decided that while Collin was sedated for the MRI to have the whole tube changed, because an NG tube is usually a little wider to allow the bolus feedings to go more quickly. At least we could spare him the discomfort of changing the tube while he was awake.
After the MRI, the oncologist came in to tell us that it showed no new tumor growth, which was a relief. She said it did show some blood at the surgical site; it was impossible to tell if the blood was old or new without doing a CT scan, but either way the blood would eventually reabsorb. If the blood was new, she thought it may have been possible that the Heparin (a blood thinner) that had been used during the stem cell collection to keep the IVs from clogging may have caused a slight bleed. The X-Ray showed no problems with his stomach. She then started Collin on Risperdal, a psychotropic drug that can help with Morphine withdrawal.
That evening Collin had two poopy diapers; he fussed a lot and seemed uncomfortable, and it didn't seem like the stool softener he had been getting really helped much. He also had the first dose of Risperdal. I nursed him to sleep (over the last few days he suddenly became much better at latching on properly and nursing more normally!) and held him for a while; it was so nice to finally see him peaceful again after three days. While I was holding him, there was a thunder storm, and afterwards when I looked out the window, I saw a rainbow. When I put him in bed, he woke up and was agitated again; the nurse went to get a dose of Morphine, but by the time she returned, he was asleep again, so she held the dose. I was so incredibly tired and drained myself that I again just collapsed into bed.
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