The first day after surgery was truly better than expected. He had vomited quite a bit the night before, and though he was asking for food a drink, he really couldn't hold anything down. After they were able to get his pain under control, we just couldn't believe how well he tolerated the surgery. He did refuse to move his neck or body for that matter, but his spirits were up, and I'm sure some it was just pure relief that everything was working well. He even told the doctor he loved having the catheter in place, which was an absolute first for the physician. They like to remove the catheters as soon as possible to limit the risk of infection. Plus, getting it out forces the patient to move around a little more. I am certain Noah understood this perfectly, and would have rather risked infection than having to move his very sore neck and head. So, he won, and they kept it in for an extra 24 hours.
The nursing shifts at UCSF are 12 hours long each so you only have 2 nurses per day, which I think is very positive for the patient. At Oakland, the shifts are 8 hours each, so just when you're settling into the person, they change shifts. We were also very fortunate to have 2 male nurses. I never realized how important nurse gender was to Noah. He relates to the male nurses so much better, feels more comfortable with his body, and frankly is so much more cooperative with them. Our 2 nurses in the ICU were both kind of cool, hip, in their late 20's men, and they truly contributed to his sense of well being. It really was a different dynamic than a female nurse is for him, and I can't stress the value of having men in the nursing field. I am more and more appreciative all the time.
By Friday evening, which was about 48 hours after the surgery, we were transferred to a transitional unit where he would stay until we were released. It is here that things took a turn for the worse, and brought us back to "Roid Rage" all over again. From about Friday evening until Monday afternoon, the steroids they gave him to keep the swelling in the brain down, really started to affect him negatively. We had been through this before so it was not as frightening, but it was still very difficult to watch him suffer so greatly. He was totally paranoid about his IV lines and his port. He had IV lines in each arm crease, and they were also using his port to deliver meds and fluids. He really wasn't able to see that well which I am sure contributed to the problem, but if someone got within 5 feet of him, he'd scream "don't touch me, don't touch my IV, don't touch my port." He was super agitated, and very combative to the nurses. He refused to eat, drink, or even have his leg rubbed. He was miserable. They tried various meds to keep him a little calmer, but they sedated him too much, and that was unacceptable to him, so he refused the medication as well.
We felt very lucky to have the family support during this time. In addition to our parents who have been at our side since the beginiing, Adam's aunt came to stay with Eli and Simon for the week, and also brought her daughter who is Simon's age. They were so well taken care of and loved, we will never forget how much she helped us. She brought the kids to the hospital a few days in a row, and even brought friends as well. Unfortunately, Noah was either too sleepy or too agitated to engage, but I know how much it meant to Eli especially to be there, even it was for a few min. By Monday, the steroids had begun tapering off, and we could see he was returning back to normal. It was a very long 5 days, but we were starting to see the light at the end of the tunnel. The physical therapist came and was able to get him off the bed, albeit screaming and shouting at her, but he did it. And we know its this fighting spirit that has made him so strong throughout. By Tuesday, the doctor told us there was no medical reason he needed to be here anymore, but that he had to be able to walk on his own, and eat. As soon as he heard that, the light went on!! He said to send in the physical therapist, and he ordered a huge plate of food.
When she arrived he used all of his might and strength to pull himself out of that bed and walk a little down the hall. He made it about 20 feet to a a little step which was another ticket out of the hospital. He climbed that step with all his might, took a rest in a chair, and then headed back. She said it was sufficient, and I assured her we could manage him at home. She gave us the green light and we were out of there. Very happily I must say.
No comments:
Post a Comment