I’ve been trying to get a post together talking about how things haven’t changed, which is a good thing. Maggie wasn’t getting any worse in this post I was going to put together. She was just staying the same holding on. Well……it didn’t last very long. We all know Maggie has been having fevers on and off, but pretty much on, most of the time for the past, probably 3 to 4 months. Well I didn’t think much of it when it jumped a little higher for a short time and then went back down to the lower fever. Then it jumped and stayed a little longer the next day and I started to get a little nervous, but I decided to just watch it. We then were woken up today by our nurse telling us that Maggie was at 104 and rising, and that was after tylenol had been given about 20 mins earlier. She also said that Maggie had a high heart rate.
We jumped up and started to find ways to get her fever down. We tried cold rags and she did not like that at all and she freaked if we even mentioned a bath. A bath just isn’t worth it for a kid that has a trach and doesn’t want to be in there. That could be an even bigger disaster so we settled on giving her a popsicle. After a bit the fever went up a little more and then started to come down. She kept her low grade fever which I was okay with. While looking for things to cool her down I emailed her doctor to see what she thought we should do. She emailed me back and told us to go in. She called the ER ahead of us and told them we were coming and explained Maggies complicated history the best she could. So we eventually headed there.
Once arriving at the ER we got right back and they started doing what they do and asking questions. At this time Maggies fever was low. She weighed 14 ½ pounds and was sucking a ring pop. We answered all of their questions and they seemed very overwhelmed with her complicated history. Not surprising they always do it seems. They were nice though and got right to getting an x-ray and a secretion culture. Maggies fever was starting to rise at this point. They contacted the doctor that told us to bring her in to see if she wanted anything specific tested for. We all agreed that we were not even going to attempt to get blood right then because nobody thought they would be able to get an IV in her. She is obviously dehydrated since her kidneys don’t work properly and she didn’t have any good places to draw from when they looked. So we were there for a couple of hours, probably our shortest stay in the ER ever. Then they said that they didn’t know what was wrong and that we could bring her home and wait for results from the culture which some would be ready by the evening. I wasn’t completely thrilled with this. I mean I didn’t want her to be admitted which we made clear when we got there, but I just want some more answers. By the time we left her fever was almost 103 and she was really tachycardic (fast heart rate). Even her respiratory rate was really fast and shallow. They were concerned but didn’t know what to do. So I asked them to talk with us and help set up a plan incase things got worse. So we did that and we agreed that we would have her admitted to the second floor but no other floors if she had to be admitted. They said they would help with that so we felt comfortable with the rest of our plan and headed home.
Once home Maggies fever continued to rise. She was very sleepy and just continued with a fast heart rate and respiratory rate. We were just counting down the time until we could call and get results. Oh and I’m sure everyone can guess what happened to her stomach because of this illness. Yep, that’s right it stopped. So after dinner (Maggie had a popsicle for dinner) we called to get results and she has RSV. For those that don’t know what this is, it’s a respiratory virus that is really serious and can turn into pneumonia. In a complex kid like Maggie it can be fatal. So its really scary. We are watching her very closely. We have a nurse so the hospital thought it would be best if we kept her home if we can handle it so that she doesn’t get something else on top of that to compromise her even more. One thing though, and we will bring her to the hospital. We are really nervous about this and are praying she doesn’t get pneumonia. Her lungs looked crappy in the x-ray today and are way under inflated as usual and this all puts her that much more at risk for a really bad outcome. Some of you are wondering if she got the RSV shots. The answer is no she didn’t. Someone either didn’t make the phone calls or the insurance wouldn’t cover it. We aren’t for sure at this point. So this all just stinks. Especially because we don’t bring Maggie anywhere. We don’t do much of anything so that she can stay as healthy as she can. It didn’t work.
We just want to thank everyone for all of the prayers!! We appreciate it so much! And everyone that has brought us dinner or taken our kids its been so nice! Also a lot of you have asked about Taveon and how he is doing. He is doing great!! His airway was really irritated from the breathing tube and he struggled with that for a couple of days but he is doing much better. We did receive results from his ph probe but I will go into that in another post. Thank you for everything.
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