A long journey to home

What a journey we have had. Jack has had a little bit of everything over the course of a 10 day period, plus the months that lead up to his hospital admission. Things rapidly changed with Jack once he was discharged from UNC last Saturday. He landed right back in the hospital via ambulance at Moore County ER because of labored breathing & being extremely lethargic. I knew he had pneumonia & he had just that. His stats were very low, oxygen down in the 60’s at one time, blood pressure numbers as low as 55/30. Illnesses hit Dravet individuals like a ton of bricks. As complex & fragile as Dravet is to treat, often, the Dravet patient bounces back quickly which is what has happened in Jack’s case-thank goodness. Coming into the hospital the first time to help treat the dehydration, malnutrition, & to get home health started, nearly caused me to have a mental breakdown. The doctors were very bleak in their assessment of Jack after I refused the G-tube. They basically put him on two appetite stimulants, finally treated the severe constipation with prescription strength medication, & sent us home with hospice care. The team didn’t believe me when I told them how stopped up Jack was & that he needed cleaning out which I felt was the whole underlying issue. After he did get cleaned out, that’s when Jack started showing signs of pneumonia but no one knew. He was too sick to stay awake, too sick to eat, too sick to do anything. I blamed it on an illness & the new meds, doctors blamed it on the new medications solely. After finally getting Jack stable after his second hospital admission in the same day, he got hungry! He has eat! One of his favorite joys has been ordering off the menu for hospital room service & pressing the nurse call button! The doctors are all baffled at how they missed the pneumonia. Since this is a teaching hospital, I said this was a teachable moment for the team-LISTEN TO THE PARENTS!

On Sunday evening, Lee came up to relieve me from that horrific bed & multiple middle of the night disturbances. It was much needed, but Jack had had enough the following day. He started yanking everything out, throwing things, trying to fight, acting a fool. I pleaded with y’all to pray for calming for Jack, but I also had a heart to heart with him when I returned from my mini vacation from home. I told Jack that he was very sick. If he did not let the doctors & nurses treat him, he was going to die, that many people had died from pneumonia & he might be one of those. It was a hard talk to have, but it was needed. Jack started to cry a little & complied with every single request since. What happened next was something very scary for us. Jack’s hemoglobin was dropping, at the lowest it got down to 6.7. That is when the team decided his levels were not improving & blood was needed. Jack handled it all like a champ, even after his fourth IV start in a week. The doctors think that several factors played a role in the low hemoglobin. One, lack of nutrition. Secondly, the infection of pneumonia. Thirdly, maybe one of his seizure meds. Those three things together created a disaster. I’ve realized why giving blood is ever so important now. I recently tried to give but couldn’t because my hemoglobin was too low, I will be doing whatever it takes now to get my number up & continue to give back. A big thank you to all that give!

The good news is, Jack is doing so much better. One of the things that happened to Jack over the last few weeks, the tone of his voice got down so low we could barely understand him. His voice is much stronger now. Jack made a quick turnaround from all he had going on. If all goes as planned, he will be discharged yet again tomorrow. He is still weak from the pneumonia itself, but no longer needs oxygen support, blood pressure has finally stabilized, & the original reason for coming in eating & lack of nutrition have been addressed. We are now equipped to handle his constipation needs at home with daily treatment & we have a backup plan if a lack of appetite rears its ugly head again. There is one problem with bringing him home, there are going to have to be follow up doctor appointments to check his hemoglobin & lungs. Y’all continue to pray for Jack’s compliance with his medical issues & continue to pray that the violence he tends to show will be removed from his body. Your prayers helped get us through this most difficult time. Lee will be so glad when we return, I don’t think he realized how much work it takes to be me & he also really misses my ice cold feet when I do make it to bed. Poor Teddy must think I have abandoned him. I missed out on taking Ava to get her permit & hanging out with her. I’ve had enough of Nickelodeon tv for a lifetime, that’s the only channel Jack has watched. We’ve had excellent care this go-round. Through all my complaining about the staff making tons of racket in the halls at 3am, knocking on the door an average of every 20 minutes, & having to tell everyone to come back because Jack was asleep at 6:45am (don’t poke the bear), the staff did an awesome job of making sure Jack got the help he needed. My complaints were purely for venting & comedic purposes only, no one ever saw me show out! There have been many to do exactly what I’ve done with Jack for longer stays, but the main issue I had was the isolation. The rules change daily on who can come in due to Covid. I couldn’t really go anywhere because I didn’t want to upset Jack by not being in the room, the staff certainly didn’t have time to sit with him. The isolation was the worse part of it all outside of Jack cutting up & being sick. The hospital ain’t no place to rest & during Covid times, it ain’t no place for visitors. I’m looking forward to getting back home & being busy doing my thing. And really looking forward to getting back to a good cold Pepsi (they don’t sell them here) & my pickled corn & pickled quail eggs!

Author: dravetsyndromeblog

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