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Harper's arrival and journey into life

Latest journal entry

Posted 2019-10-25T12:36:10Z

Oct 24 - Brand new adventures that are just like old adventures!

Sometimes I have a hard time remembering what I’ve already posted. It all just seems to run together, even when I go back and skim through the previous posts. I could almost copy and paste and just change around dates and hospital names and it would all be caught up! We’ve visited two new hospitals since the last writing, unfortunately. Let’s back up and start from the beginning…

Jami has been getting up at 5am for months now to go out and run. She’s been training for another half marathon here in Dalton, the Red Carpet Half. I’m proud of her dedication through all the tiredness and other health issues she has to deal with to stay motivated for something like this! She had the thing licked and was poised to beat that 2 hour mark. The morning of she got up, got ready, and was about to get her water bottle and snack when she walked in to check on Harp. That’s when I heard my name on the monitor. For some reason, I knew it was bad. I could tell in the voice this wasn’t a throw up, or dirty diaper, or whatever. I get in there and she’s stuck in another seizure. Did our checks, and I think I actually left a bruise on her little arm where I pinched her once trying to see if she was there or not. She wasn’t. I had about 3 seconds in my mind where all the questions of worry filled it, like why did this happen again so soon? What kind of damage could this be doing? How long has she been in it? Why is the new meds not working? Then I shut it all out, clicked into objective mode. We both worked quickly to get the emergency suppository meds in her, call 911, gather all her equipment, get the house opened up and lights on, etc. It’s like we. had. just. done. this. Police were already out front putting up cones for the race that would pass by our house. The race that Jami was about to abandon. Man I felt so bad for her. Logistically there just wasn’t anything we could do with Harp going to the ER and all the other kids home and the race about to start, not to mention the worry she would have out on the course. Had this happened 10 minutes later, she would have been at the race, no phone, no way of knowing, and had a great race. Her running partner for her morning runs finished 1:57, so I know Jami would have been right with her and beat that 2 hour mark. I wished that’s how it would have played out, but it didn't. It would have been a mess, but I could have figured it out and been ok. But she wasn’t about to leave with all this going on. Family comes first for her, even when it means giving up something you’ve worked months to prepare for.

The ambulance got there and she was starting to come out of it, but stats still all over the place. They took her to the local hospital here this time, our first trip for Harp! It was quite interesting. The people were really nice and all, but it’s clear they do not normally deal with peds. The RRT had a terrible time trying to draw a blood gas, and poor Harp had to suffer through multiple attempts. He was explaining to me at one point about suctioning a trach and how to do it and being sure not to do it too often, even though we’ve be dealing with this thing for 2 years now. I also pulled out some of our own equipment for it because they don’t have the right size stuff for kids in there. They seemed pretty shocked that we knew answers to every question they threw at us, down to trach size and style to meds and dosages to knowing exact times of events through all of this. I kept trying to tell them this isn’t new for us and almost felt like I was trying to calm them down haha. But overall they were really nice and the Dr came in and made a few calls to our normal doctors in Chatt and figured out a plan for a med increase and felt like we could go home. It was probably only a 6-8 hour stay I think, plus only 4 minutes from the house made it feel like a quick trip. Once home she went through her normal 2 day recovery and was right as rain again. At least for a minute.

We had planned a big family trip to Pigeon Forge and Dollywood for a while now with my parents and my sister and her family. Good time to get away, good weather, just a nice break we thought. Well, didn’t quite work out that way. Rewind a bit to the day we had the seizure. At some point Harper threw up. We really didn’t think much about it since it had been happening and everything else going on, whatever. Skip ahead a few days and she started getting sick, like really sick. We go to the Dr and turns out she has aspiration pneumonia. She apparently inhaled some of the liquid from when she threw up and it settled in her chest. So we start another antibiotic and fight that, hoping it clears before vacation. For the most part it did. Once we left for the cabin we felt pretty good about our chances of having a clean few days. Do you remember when I said back up top that we visited two new hospitals? So, she starts throwing up again. Food. Great. Looks like the J tube has come out of place again. We spend an excessive amount of time back and forth on the phone with Hospice oncall and finally get orders to go to the nearest hospital with flouro, which is in Knoxville. So the kids go with mom and dad to the park and Jami and I head to the big city with Harp. I will say this hospital is the most efficient hospital I’ve ever been in. We didn’t wait 5 minutes between anything while we were there. It was awesome. Unfortunately, the flouro showed that it was still in place and not causing the food vomiting. Shoot, what now? We go back to the cabin and load her up and head to Dollywood. Jami got to ride a ride with the kids who were so excited, and we got to push Harp around to see all the lights and pumpkins that were out. Everyone loads up and goes back to the cabin for the night to try again the next day. Only it was much of a repeat of the same day for us. Harp still throwing up, can’t figure out why, so we are at the cabin most of the day back and forth waiting on calls from the doctor on what to do. Eventually we made our own plan, backed her way off on feed rates and started monitoring her meds. Jami suspected that antibiotic was causing problems, because she would throw up not long after getting meds. I don’t know why that would have an impact on food coming up, but we shuffled meds around doing our own DOE and it seemed to work. We went back to Dollywood again that evening, looking at lights, and I got to ride two small rides with Hayd and Jeremiah, but they were so excited. The lines for the adult rides were almost nothing, like 5 minutes or less, and Jami and I wanted to jump in and ride but we’d had no time with the kids so we spent it all with them. After that, everything seemed to level out. Harp was doing better, even though vacation was now over and we were heading home. Since then she’s continued to do pretty decent, with only a couple of throw up in the past week. Still don’t understand what’s going on there, and we may never. It’s just hard to help her when we can’t figure out what to do. So, after the most exhausting vacation ever we are back to our ‘normal’ life now and doing well. I probably missed a few things in there but they aren’t worth going back to fill in at this point! What’s next for us? Not really sure. Probably finishing up some halloween costumes for the kids and trying to do things like normal people for once, haha.

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