Over the last couple of days we have been dealing with some crabbiness and it has been a challenge to get Lucy on any sort of schedule with her eating and medications.
Tuesday morning her right chest tube was removed, so they held her feeding. Her left tube was still draining quite a bit and due to the collapsed lung the doctors are really cautious about removing it. They do not want to have to put it in again if fluid accumulates a day or two later. Her afternoon and evening feedings ended in vomiting so Lucy was put back on continuous feeds for the night at fourteen ML an hour. They wanted to settle her stomach before going back to bolus feeds. She was given a dose of pain medication and through Tuesday morning she was very lethargic. Two doses of her sedation medications were held so she would be more awake. By Wednesday she was really crabby. We weren't sure if it was because she was hungry or she needed more medication. We were able to get her to tolerate her forty two ML of formula (every three hours) all day, but she still cried a lot. Then on Thursday she got her blood tranfusion. For this procedure, she can't have food an hour before or after and the process is three hours long. It was another day of inconsistensy and lots of crying. By the end of the day I was at my witts end. Thank gosh for Mike. He was able to take over soothing duties for the evening visit. We have come to find out she likes a firm back patting....can you feel the burn in our forearms? They are on fire! Grandparents you may want to start flexing those muscles. Friday still had some crying, but we were able to hold a normal schedule and her crying did seem in line with feeds. She was able to get in some good naps after an entire night of being up. She also had some constipation in the morning which didn't help with her comfort.
A rare moment this week without tears.
The rumors swirling around the PSHU are that Lucy could go to the floor by Monday, which means there's a possibility we would be home for Mother's Day. We still have a lot to learn. I met with Angela to talk about what would happen when we move down there and going home. Angela is the Norwood Nurse (or at least that's what I'm calling her). She deals with all Norwood patients until they have their Glenn procedure. She informed me we will be best friends. I'm okay with that if we can call her at 2 am on a random week day because we can't get Lucy to settle down. Anyway, most patients are on Floor two for three days. Like I said in my last post, we'll be taking care of Lucy. She also suggested that our Grandparents come in during that time to help and observe and ask any questions. They will be involved in her care so it's important for them to be comfortable with feeds, medications and temperment. When we do come home, we will have a home nurse that visits twice a week for the first two weeks. We also have to attend the Norwood clinic once a week. It was comforting to know that we will see a nurse three times a week for the first couple weeks home. The one thing so many of the staff keep repeating is 'you are not alone, just because you leave the hospital doesn't mean our care stops'. I wonder if there has ever been a mom that has called everynight for the first month being home. I kid.
Lucy prays "please let me go home soon!"
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