Update

First of all, I’d like to thank you all who have text, messaged, & most importantly prayed for Jack. The whole experience of watching Jack fall into malnourishment has been so heartbreaking. And while some may question why it took so long to get Jack medical help, sadly, Jack didn’t want it. Although Jack is mentally disabled, he is still very much in control of his body & shows that control in violent acts if things do not go his way. While it may of looked like I was busy working or going out to eat, I was working behind the scenes trying to get Jack in-home help. I exhausted every in-home nursing care facility in our home country & surrounding ones. I had been begging his doctor for something for constipation for a long time outside of what you can purchase over-the-counter & got absolutely no where with that. When you have a person that flat-out refuses to go to the doctor, your hands are tied & that broke our hearts each & every day. We kept hoping & praying for a break in the bad cycle Jack had entered. This hospital stay has been rough! I have been the main one up here with Jack, the one making all of the medical decisions, the one that looks like a crazy Mama to the doctor team that rounds every morning (more on that below), and the one the sleeping on a horrific bed. The burdens I have had to bear alone have been so hard. I have cried myself to sleep every night only to wake up & cry more. But I never let Jack see me cry because that makes him upset.

In years past when Jack has been a patient at UNC, it was much more manageable for us. Visitors were allowed freely & that allowed me some respite time away from the room, and I also had support from the visitors when discussing health needs & concerns about Jack with the doctors. Now thanks to Covid, that hasn’t been possible. Lee is busy running the farm & business, but he’s also the second allowed visitor. He was able to come for several hours Wednesday to see Jack which Jack enjoyed. The charge nurse allowed my sister Jodie to come & relieve me for the night Wednesday. It was very much needed. I was able to get home & talk with Ava some, play with MY dog Teddy, dip strawberries, & play a literal secretary at my desk for about an hour. I enjoyed the normal-ness of my daily routine, but the house felt so very weird without Jack there. I can’t recall a time in the last 10 years that Jack wasn’t there. Sure, there were times he’s visited at Mama & Daddy’s or Aunt Vicki’s, but not for the whole night. It was sad. Of course I felt guilty for asking Jodie to stay & for leaving Jack, but I was about to have a breakdown from the stress. It was literally Monday-Wednesday nothing but doctors rounds, meetings with doctors in conference rooms, a palliative care meeting, on & on. On top of all that, it was the feeding of Jack that took hours, holding his cup, taking him to the bathroom, figuring out what he wanted to order from room service which was so complicated, and changing his clothes about 7 times in one day because he got a speck of water on them.

That takes me to my next point. As soon as we got to the hospital, labs were ran & the bombarding with the doctors started, but I’m glad we are here because that’s what Jack needed. Almost immediately, the doctors started talking about feeding tube placement either in the nose & possibly more permanently in his belly. A little back story, back in 2017 when Jack was admitted to UNC the last time, he had to get a nose feeding tube. He was admitted for being repeatedly violent & was malnourished at that time (both due to the trial he was on through UNC for prescription medical marijuana). The tube was to give him meds because he was so violent & kept having seizures. Jack remembers that particular incident very clearly & talks about it still to this day. He was traumatized. As the doctors kept talking about the tubes & harping on them, I felt boxed in a corner. No one wants Jack to be helped as much as possible than us, but if it’s not comfortable for Jack, then I’m not going to allow anyone to do anything that he’s not comfortable with. I kept telling the doctors that Jack would not have either, he strongly said no to the nose feeding tube when I talked to him about it Monday night & I didn’t even bring up the belly one. Jack doesn’t leave things alone. He picks strings on shirts & in a day, there won’t be a shirt. An ant bite looks like a gunshot wound in less than two hours. I had to change his clothes 7 times in one day due to a drop of water on them. This is something that we as his parents know he would not tolerate. Each time I told the same group of doctors no, I felt shamed even more each time. I then got called into the “principal’s office” by three doctors for a meeting. Basically they were telling me that Jack had to have a feeding tube. I came out of that meeting even more upset than I was originally & feeling like the worse kind of Mother. Yes, I realize a feeding tube would be the best option for Jack, I’ve said it many times in my blogs, but I know my child. I called Mama that night upset & told her they made me feel like I have Munchausen’s by Proxy.

The next day, I had another meeting with the Palliative Care team. These group made me feel very comfortable in our discussion & not judged at all. They work with patients & their families that have chronic diseases to manage care. During our meeting, I had to relive Jack’s whole story which included the violence on his part. That is always an upsetting part to discuss because I am so traumatized by his violence. After our discussion, I told the team I didn’t feel like Jack had been given a chance before jumping to such drastic measures like a feeding tube. I feel like Jack’s main issues causing the lack of food & liquid intake are the severe constipation. They agreed that we need to address that issue in a more aggressive measure other than what I was doing at home. They also put him on an appetite stimulant four times a day but it makes him so sleepy, he sleeps all day & all night which I addressed with the team today. I have never felt so bad as a parent before in my life, but I will say I am still confident with our decision. After giving prescription strength meds, Jack used the bathroom twice last night, which is a huge deal for him. It still seems crazy to me that the team jumped to one drastic measure before addressing the root cause or really listening to what I was saying & know about my child. They also began an appetite stimulant pretty quickly, but there is one problem with it, it makes him so sleepy. Jack came in fatigued, but with this, he sleeps all day & all night. At least someone is getting some rest! The nighttime routine on this particular floor is no different from daytime, they come in all the time, carry on laughing & talking in the halls, changing trash bags. Ugh, kill me now! It would be way more beneficial for me to be a man in this current situation given they can sleep through anything! The team keeps talking about how much Jack is sleeping. I’m like he’s being given this stimulant which is also an antihistamine four times a day, what do you expect? I mean I ain’t got a medical degree but that’s obvious!

Jack is enjoying his nurses & they have been super sweet to him & us. He’s been cooperative for the most part except for the second day, he was done! With the bribery of the money, that has helped. One of the worse parts of this stay has been sleeping in a bra. You never know who’s going to pop in, so I’ve got to be ready at all times. Our prayer needs at this time are for the stimulant to do its job, that we can get the timing right so Jack doesn’t sleep so much, he will start being thirsty again, can use the bathroom regularly & of course get to come home soon. Again, thank you all for the prayers, keep them coming. Apologizes for typos & such, I am very sleep deprived!

Author: dravetsyndromeblog

44 year old Mama of three kids, wife of a farmer, & business owner. View all posts by dravetsyndromeblog