So I’m finally sitting down to finish this post, and by finish I mean wipe it and start over yet again. It originally started out about how great Harper was doing! We had a really good run there for a while. That was back in late Jan/early Feb when I started writing that. Then we had some crazy stuff go on, including the first broken arm for the boys and a front tooth extraction for the other one. The arm is healing nicely, although it was misdiagnosed at the hospital and turned out later to be much worse than they initially thought. It was some special kind of break that is often missed and leads to lots of problems down the road. Thankfully the specialist caught it and was able to fix it. He still has a rod in his arm that will come out in another couple of weeks. We had to cut the cast off early because he was trying to scratch the inside of it with a pencil and the eraser and metal part came off inside the cast. Of course it did...sigh. So he’s gone through two splints, two casts, and is almost at the end of the road. It’s been his right hand so he was worried he couldn’t write or eat, but he did well. He became very panicked when he realized that was the hand he used to eat and asked if he was going to starve haha. The other one had an infection growing under the tooth where he fell and smacked his face on the urinal at school and busted everything up. It didn’t kill the tooth, but the only way to clear the infection was to pull it, so now he had a big hole in the front of his teeth for the next year or so. It’s going to be a long road with these two boys and how rough they are.
But back to Harper. She has her waves of good and bad, and we recently went through a pretty rough bad patch. We spent 5 days in the hospital last week, only to return two more times to the ER after getting out. She also had two more seizures shortly before that hospital stay. They were both localized focal seizures like the ones in the fall. We had to use the emergency meds both times and call the EMT’s out. One of them I took a ride in the ambulance with her to Erlanger to be checked out. Unfortunately, that wasn’t even the beginning of our long stay. We came back home with new medicine orders. A couple of days later she went out on us, just couldn’t wake her up or rouse her. Changing clothes, bath, cold rags, nothing would wake her up more than just a couple of seconds. She didn’t even wake up when she threw up a bunch of food. That’s when we took her in for evaluation. There were several issues going on from what we found. The throwing up was from the feeding tube, again. It was barely in place and food was backing up into her stomach. The sleepiness was from the double increase in medicines for the seizures. The low oxygen was just a side effect from all of this going on and another possible respiratory infection at the same time. They put her to sleep and put in a longer feeding tube that goes really deep into the intestines. We have gone through a medicine transition to get off the meds that were making her fall asleep to a new one on the market. It’s apparently super expensive and insurance won’t pay for it if you haven’t failed all the other seizure drugs first, which we have, so thankfully they covered it. This week has been a mental crunch trying to remember all these medicines and transitional doses and taper schedules. Even written down it’s confusing because the bottles don’t match what they told us to do which also doesn’t match what the discharge papers said to do. Nothing matches anything. Then you have 3 different nurses that have to be in tune to what’s going on. Anyway, I spent four wonderful nights sleeping on the hospital couch with Harp. I was probably getting up every 20 minutes to suction her through the night, which wasn’t so bad considering nobody can sleep on those couches. The cafeteria food was a solid mediocre, which I’ll take without complaining because I’ve had some really bad hospital food before. Harp and I spent our valentine’s day there in room 325. Seems like every time we make plans (jami had a surprise date planned) something goes wrong. At least we were starting to see some signs of improvement at that point and only had two more days before we were released. Of course with hospital stays also come IVs. They got the first one in on the first try! That’s only happened one other time. Unfortunately, she pulled it out. It took 10 more tries to get the next one in. The last 5 were done when she was asleep on the gas and they still couldn’t get it in. Her poor arms and hands and feet had big bruises all over them. In our final ER visit last week the girl was able to get the second try in place, so much better, but overall that’s 13 attempts in a week. I feel so bad holding her down while they do it because she’s really strong now and you really have to hold firm to keep her still. It’s one of those things you just have to do, though. Hopefully there won’t be any more for a long time.
So, why were we back again? She wasn’t having any wet diapers for two days and putting out lots of clear green liquid from her G port. Gastro oncall says bring her to the ER for evaluation, and after some x rays they find she has a blockage in the intestines. Apparently when we went back on feeds with that new longer tube her body couldn’t make the adjustment. So they got her cleared out, we tapered on with the foods and liquids, and all was good. Until it wasn’t. Two days later, same exact thing. We got back. Copy paste. Only this time, there was no blockage. They looked at everything. I ended up trading with Jami and coming back home while they continued to work, but eventually they were sent home with no answers. That’s frustrating, but what can you do? We hit her hard with all of her laxative and softener meds and lots of fluids. Eventually, maybe a good day later, she just perked up. She was awake, smiling at us, liquid output had slowed, and feeds were going well. No idea. The last two days or so she’s been right as rain! She is having a massive increase in saliva, which we are unsure about. She’s on medicine to control it, but it’s pouring, like for real pouring. She goes through HME’s quicker than an hour. The suction machine is pulling probably 200mL every few hours. She threw up once that must have been half a cup worth of just clear saliva. I immediately plugged her up to a ferral bag at that point and another 150 mL came out. It’s insane, but she wasn’t upset or anything. Didn’t cry a bit during any of it. So we are left trying to get this under control. All in all, I’ll take this over anything else we’ve dealt with recently. I would love to hear her voice again. She’s not been able to wear her Passy valve with all this going on in a couple of weeks. I put it on her for a bit Saturday, but she’s not quite ready to go back to wearing it all day again. For now we just enjoy those sweet smiles that have come back to us and thank God for continuing to see her through all the ups and downs.
Tomorrow will be another busy day as we get fitted for new hand braces. We’ve already been fitted for a new stander and wheelchair earlier this year that should be ready in a month or so. She’s getting bigger and needing all new equipment now. She’s also getting heavier and the living situation in this rental is becoming more difficult with time, especially bath time. Our new house can’t get done quick enough but with this insane amount of rain this year we are way behind schedule. I hope it all works out and gets completed and we stay under budget. A good buddy at work told me “Hope is not a strategy” haha! I guess sometimes it’s the best I can do. Thank you all for your continued prayers. She, and we, need every bit of it.