Happy Belated Memorial Day! We had a very busy weekend but all-in-all, it was a nice one. However, it did end up being a long weekend. I will start from the beginning.
Friday was lazy. Matt, Jack and I just hung out at the house and did nothing important. It was nice to take it easy after a week of work. There’s nothing to report there.
Saturday was another laid back day. I ran errands while Jack and Matt stayed at home and enjoyed each other’s company. By the evening, Matt was planning on going to a friends house to hang out and chat on the back deck. I chose to stay home with Jack and take it easy. He’s still not the easiest to travel with and I didn’t want him to be out too late. I knew Matt wanted to go and hang out with this friends and shoot the proverbial shit, so I stayed and introduced Jack to vanilla Elecare. Elecare is a prescribed formula that Jack requires due to his resected bowel and quite honestly, it tastes terrible. Jack is not a fan of the taste, so we have not ‘practiced’ drinking by mouth as much as we should. When I had ran my errands earlier, I picked up some vanilla flavored Elecare and given some to Jack as an extra feeding. He gobbled down one ounce (quite impressive for a CDHer with an oral aversion). Now I will have to research some bottles and try out a couple models to see what he will drink from the best. I was also happy to have the vanilla Elecare since we were out of the unflavored formula and would need some for his overnight tube feeds.
After Jack’s successful attempt at drinking formula by mouth, he hit the hay and I wasn’t far behind.
Sunday morning came at about 7am when Jack woke up. He was wet so Matt changed his diaper and we hung out for about an hour while Jack told us stories which evidently included plenty of jokes and humorous anecdotes. About one hour of story time and Jack was back to sleep. Before I knew it, I was waking up rather hurriedly after taking a one eyed glance at a clock that read 1:30pm. Jack had slept through a bolus feeding and we needed to get in gear to make up for the missed calories. Once the feeds and medications were caught up, it was time to plan and get the family ready to go to Matt’s dad’s house. He was having family over to celebrate Memorial Day and enjoy some delicious food. Though it was very hot, Jack enjoyed himself and entertained everyone else with his laughs, his orthotic helmet and his constant kicking feet. We returned home at about 10:30 pm to go to sleep and start all over on Monday.
Monday would be busy for us since we were entertaining Matt’s mom and stepdad, his siblings and their significant others and my parents. We started early with the preparations while Jack’s nurse watched him. His first feed of the day resulting in a little vomit which we cleaned up but didn’t think too far into it. He had spit up a little recently and the High Risk Clinic ensured us that his nissen may be loosening and could allow for some formula to come up. We went about our day. Matt and I finished all our chores and preparations for company and people began to show up. The fun ensued and great food was eaten. While I was outside playing cornhole, Jack as inside with his two aunts and grandma, enjoying his last bolus feed for the day. I was urgently called in to tend to Jack since we was gagging and spitting up. Fortunately, this episode didn’t last too long and we enjoyed the rest of our night was planned. The hang-up started later Moday night when Jack’s ostomy bag fell off. This is nothing out of the ordinary except that this was the second bag replacement that day. this meant red, inflammed skin under the ostomy bag wafer which needed some extra attention. Matt and I changed the bag with the help of MawMaw’s ‘Jack distraction’ and sent him off to bed. That bag change would be the start of many.
Early on Tuesday morning, Jack bag fell off again. At the discovery of this messy project, we also realized that Jack had thrown up in the middle of the night. Since he sleeps on his side, it must have rolled out of his mouth and didn’t bother him enough to fuss. Scary! At this point, Jack’s nurse was at the house and she and I changed the ostomy bag for the third time in 24 hours. Jack’s skin was starting to get really red and he was having some suspected damage to his stoma. Now, as a result of laying him down to change the ostomy bag, he was starting to retch and vomit again. His nurse stopped his bolus feeds and opened his gastric tube port to let out some pressure quicker than the Farrell bag was allowing. By 11am, Jack had vomited at every attempt to feed, so per recommendation from High Risk Clinic Jack is not back on continuous feeds for 24 hours to see how he handles formula.
At the same time that Jack was put onto continuous feeds, I ran out to by some more Elecare, this time it was unflavored. My suspicions is that the vanilla was too sweet for his resected bowel and he needed the unflavored formula for the bolus feeds. With the continuous feeds and unflavored Elecare, he is on hour 14 and is handling it great. The evening was going great until Jack’s ostomy bag fell off, AGAIN. So, the summary of our Tuesday: vomits on vanilla Elecare, handles continuous feeds great, 5 ostomy bags in 36 hours, a sick day from work for both Matt and I and I’m still a little scared to sleep.
Tomorrow will be better. On a more positive note, Jack’s takedown surgery is scheduled for June 7 at 7:45am.