Oh, that’s right we were just chatting about our week from HELL in June. Well, since then things did get a lot better. Grandpa did well in rehab and got to go home just in time for 4th of July. That was steak night at his assisted living center so he was really excited to be home in time for that. He has been doing really well since.
We opted not to do the Botox in Casey’s salivary gland. We rescheduled the appointment all together, but when we do go later this month we will not be doing the salivary glands. We talked with Casey’s ENT and while he said some kids do really well with it, the biggest risk is the kids that don’t. Unlike medications she takes that we can just stop taking, once Botox is injected there is not undoing it if things go bad. We would have to just deal with the bad until it wears off. The bad with this particular injection would lead to airway issues and we just don’t feel like that is a risk we are comfortable taking.
Casey’s neuro started her on a new seizure med during our hell week. Casey did not do well with it and after a couple of weeks we ended up taking her back off. Luckily since we can get her the stomach medicine she needs now, the seizures seem to be better controlled so the extra medicine may not have been totally necessary.
Once we finally got the medicine out of Casey’s system she seemed to do a lot better. She had a great weekend for the 4th. We didn’t have night nursing the entire weekend so we were too tired to do much, but we did manage to get out in the pool some, she watched some movies in her bean bag chair and we even went to see some friends. The friends we went to visit are just down the road and just gott home with their new little baby girl. Casey did great meeting the new baby and hanging out for a little while. We really thought that over that weekend things were looking much better.
On Monday the 7th Casey had a horrible day. When we took her to bed that night we told her that she had to get some rest so she would feel better for her fun day on Tuesday. She went right to sleep and had a great night.
On Tuesday she woke up in a great mood and seemed to feel much better. My grandpa invited her to come over to his place because the miniature horses that she loves so much were coming by for a visit. Casey loves to visit Great Grandpa and she loves horses, so she was pretty excited. As soon as her little friend, Mercy- the smaller horse, saw her I am not sure if Casey or Mercy were more excited. Mercy gave Casey lots of kisses on both of her cheeks. Then she wanted Casey to pet her and to snuggle. Casey had her hands on her elephant that was on her lap. Mercy tried to move Ellie out of the way so that Casey could pet Mercy. It was really cute. Casey had a great time. After she stayed to visit with Great Grandpa a little bit and meet some of his friends. She went home and spent some time in the pool that afternoon. It was a great day.
On Wednesday we noticed her ear was smelly. She has chronic ear infections so we didn’t think too much about it. She was moody and whiny all day, but we thought it was just an ear infection coming on and all would be fine. When music therapy came to the house Casey cooperated some, but not much. That night when we put her to bed we told her that Thursday was a busy day with dance camp starting, lunch out after, and then water therapy. She went right to sleep and had an okay night – not great, but okay.
Thursday she was grumpy, but we got her ready and took her to dance camp. There was a crowded table and we pulled her up to work on the craft with the other kids. She started getting worked up and just continued to get worse. We ended up leaving about 40 minutes after getting there. She cried the whole way home and was a mess. We decided not to go out to lunch, but instead to go home and let her rest a little before therapy. Then with therapy since her ear was stinky, and now starting to drain some, we opted to do land therapy instead of the pool. She whined and complained the entire way there, all through therapy and the entire way home. We started the ear drops and usually once we start the drops she starts getting better right away and is much better if not totally better by about 12 hours.
That night I picked her up to snuggle, like normal, and every 10 minutes or so she would just scream out in pain. We could not figure out what was hurting her, but something had her really upset. Tylenol wasn’t helping and we ended up giving her morphine. Even with the morphine she was still really worked up. After we got her to bed she calmed down some and ended up having a pretty good night.
Friday she was grumpy but we decided to try dance camp again. They moved the craft to the end of class since we thought maybe she was having some sensory overload issues. She doesn’t do well in crowded environments. That was not the case. She lasted less than 10 minutes on Friday. I waited in the hall while her nurse went in with her. I could hear her yelling and screaming from the hall. We loaded back up and went on home.
One of my really good friends came by with her 2 daughters and we went out so the girls could swim after lunch. Casey was resting on the couch and did not want to go outside at all. After a little while her nurse came and told me Casey was doing a lot better and that she wanted to come out and join everyone- great! Since she had an ear infection I just sat on the side of the pool and let her put her feet in. She was much happier than she had been in days. In the sun her nurse noticed that the fluid draining from Casey’s ear no longer looked like ear goo, but rather it looked like blood. So we move her to the chair and the nurse grabs the otoscope. Sure enough, Casey’s ear drum had burst. This is new. She gets ear infections a lot, especially in the left ear that has the cholesteotoma and never have we seen it burst and bleed. It looked awful inside her ear. We called the ENT and they told us that it is not a big deal. They actually said it is good, when it burst the pressure is relieved and so she should feel a lot better now. She did seem to feel better so we were happy with that assessment. The rest of Friday and Friday night went okay.
On Saturday after getting her out of bed she was doing some of the pain crying again and her heart rate was going up. We decided to play it safe and kept her home from her last day of dance camp. We made the right call. As the day went on she got more and more agitated. She started spiking fevers, she was crying, screaming, it was a horrible day! The night was not any better. With morphine and tylenol we could not get her heart rate to come down. Casey ended up needing oxygen since breathing with everything else was too much work for her. We could not seem to get her fever down either. Then Sunday morning she had a really loose stool early in the morning and it was beyond stinky.
She had a second loose stinky stool less than an hour later and spiked another 102 fever. We called the on call since none of these things are typical with her ear infections. They called in hydrocodone as well as an antibiotic, but we had to wait until the pharmacy opened at 10 to pick anything up. By the time the medicine was ready I think we had changed 4-5 runny diapers. Each one was stinkier and nastier than the one before. We know antibiotics can cause runny stools, so we called the on call back and said we were going to pick up both medicines, but we wanted to wait on the antibiotic since we added the new symptom to the list. The hydrocodone helped get Casey’s fever down and has kept it down since. Casey was still on oxygen and her heart rate was still up, but much better than it had been.
By the time we took Casey to bed I think we had counted 10 stinky diapers. Usually she is a 1 poop kind of girl. Tim accurately described the scent as the smell of a heavily used port-a-potty on a very hot day. He nailed it, the entire house wreaked!!! We burned a lot of candles. By 11:00 last night however, Casey seemed to be doing much better. Her nurse was able to turn off the oxygen and Casey kept her heart rate down without needing extra pain medication. She had a huge stinky diaper around 3, but went right back to sleep. She had another stinky diaper around 6:30 this morning and that one set off the morning. By this morning 9 she was back on oxygen and had been loaded up with pain medication again.
We took her to see her pediatrician before lunch. She confirmed that yes, the right ear was infected, had ruptured, and looked awful. The left ear also appears to have an infection. Then she looked in Casey’s throat and said that Casey also has strep throat. I have no idea how she got strep. She hasn’t been around anyone sick. Ugh! When we asked about the stinky diapers she agreed that it was not a typical symptom of these things, but we are dealing with Casey that doesn’t really like to follow the rules. When we told her how bad they smell she had us get a sample to test for cdiff. Casey had cdiff a LONG time ago, but I do remember those being some stinky diapers- and lots of them. Shortly after we got home she gave me enough to collect the sample. Hopefully we will get those answers later today or early tomorrow. She goes to see her ear doctor later this week too; she is not going to like him checking her ears this time around. We really hope that the burst right ear does not develop into a cholesteotoma like the left ear.
I feel bad that Casey missed so many of the fun things she has planned last week. Hopefully we can get her better this week and maybe plan some fun stuff for next week. She has been fever free since yesterday morning, and we started the antibiotic today. Poor kid just can’t seem to catch a break lately. She is resting now and looks exhausted and pitiful. She hasn’t been screaming from pain since Saturday, so that is MUCH better. Those cries/screams just about kill me (and Tim). I hate when she feels so crummy. This is her first time with a double ear infection, first time with a burst ear drum, and first time with strep. Lots of first right now. Hopefully we can move them out quickly!