Saturday morning we found out, after 25 days in the hospital, that we could go home. As excited as I was to go home (I hadn't left the hospital since admission eithe) was as anxious as I felt too. Our son has different needs than he did when we walked through the door and, he wasn't remarkably better. He was still vomiting and actually threw up minutes before we were leaving. The doctor still allowed us to go. I really think that the renal doctors were considering our mental well being when sending us home. They are awesome people!
The minute we stepped in the door and Jimmy showed Landon his favorite toy, his race track, he lit up and looked like the Landon that we've known for 14 months. His aunts, uncles, cousin and grandpap came to visit and he happily crawled around, smiled and listened as he and Jillian were read books. Going home really was the best medicine!
The home nurse came to show Jimmy and I how to use the feeding tube equipment. Between the equipment and all of the medicine we were feeling a bit overwhelmed. Landon is taking 6 different medicines currently which include Cystagon (for the Cystinosis), Prevacid (to reduce the acid and protect his belly, a couple of suplements, and Enrythromicin (for the delayed gastric emptying. He gets, what are called, bulson feeds 4 times throughout the day which involves a larger quantitiy of formula given over 1- 1 1/2 hours and then recieves continuous feeds over night. Unforutunately his feeding tube will only hold half a night's worth of formula and he has to take his Cystagon every 6 hours so a full night sleep is not going be in the picture for this mommy. I guess I will have to learn to nap when Landon does during the day!
The night involved Landon screaming bloody murder several times, nasty diaper rash from intermittent diarahea, a vomiting episode- although not much considering his mommy mixed up the units on the feeding machine and gave him a large quanitity of formula too quickly and a disconnected tube that shot out formula. So all in all, not a great night! However, today was a new day and it went MUCH smoother. We have the feedings and meds scheduled throughout the day and it all seems manageable.
I have to brag that we are a pretty good team! I know that we will have good days and bad days, but my bet is that most of them will be pertty good!
It will take a little time to get used to being back home and the new routine, but you guys are doing great and just being there will definitely speed his recovery and your return to the new normal. (hugs)
ReplyDeleteI honestly admire your perseverance!!
ReplyDeleteCongrats on being home!! What a relief I bet, to be sleeping in your own bed, surrounded by your own things... using your own washroom! I am sure you'll get into your new routine in no time, and things like formula shooting out a tube will be a distant memory. You are doing an amazing job!
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