Medicine update - I called the clinic and told them I could not give her that medicine. The doctor I spoke with said that it was the only antibiotic they could give her, and he agreed it is disgusting, but that they had a big meeting about her and all determined that she had to have the very strongest antibiotic, and there was no other option. I don't think so! I asked him if they had it in IV form, I mean, she has that annoying central line, we might as well take advantage of it!! He sounded a little annoyed, but said he would call our normal onc and ask. He called me back a few minutes later and said he had ordered the IV form and it would be delivered sometime that day. Yay! I love Dr. Druzgal, she makes things as easy as possible for us! I couldn't do that to her 3x a day, I just knew there had to be another way. So now we are giving it to her through her IV, much easier.
Jade is still very sick, but so far we have all managed to stay away from it. I had to go to the doctor today, (I think we have seen 6 doctors this week!) because I'm having some weird heart palpitations. I called my ob/gyn and the nurse had me take my HR during one of the "episodes". When I called her back she said I needed to see someone today, preferrably a family doctor, since it really wasn't an "emergency", but if I couldn't find one I would have to go to the ER. I was NOT going to the ER for "heart flutterings", I would be last on the list there! So I found a doc on our insurance. He is referring me to a cardiologist and I just have to go pick up a monitor to stick on my chest over the weekend so they can see if anything is going on. It kind of feels like my heart keeps fluttering and my HR goes up, and I get a little short of breath. Surely it's nothing major, it doesn't hurt at all, but I just want to be safe since I'm pregnant and all. Maybe just stress.
We are having a REALLY hard time getting Brinley to take her meds. They prescribed a really strong antibiotic for this pnemonia thing, and it is DISGUSTING! It smells like poop, and David tasted it last night, and said it tastes like poop too (don't ask me when he's eaten poop, but if you know David and the kind of kid he was.....lol). So she absolutely REFUSES to swallow it. We're supposed to give it to her 3x a day, 5ml's. That is a lot. I can't make her eat something that tastes so disgusting, she almost throws up every time. I've tried masking it in juice, soda, raspberry syrup, etc, but it's too much medicine to mask the taste. She catches on every time. Last night, between the 3 medicines we had to shove down her throat, her shirt was soaked from spitting it out and we finally gave up on the antibiotic. The septra (the other antibiotic she has to take) we had to redose about 3 times before we could get her to swallow it. I called the clinic and left an msg for someone to give her something else, but they haven't called back. Lets hope there is something else she can take, because there is NO WAY you can make a 2 year old eat something like that. I feel so bad shoving gross stuff down her throat and making her almost throw up every time. We ARE accepting advice on this one......we'll try anything......
As for the other kiddos, Taylor is still sick w/fever and Jade, who was not so bad, woke up last night with 103 fever, and has been running a fever all day. So this a very yucky virus that stays for a long time. We're still trying to keep it away from Brinley, and so far no fever since the hospital. Let's hope it stays that way.
I talked to the clinic this morning and they said they would talk to Dr. Druzgal about the "pnemonia spot" and see how she wanted to treat it. I've explained several times, to several people that she had NO symptoms until she went into the RTU and threw up during her sedation. When she called back she said "well, we know why the x-ray was showing the spot in her lungs, apparantly she threw up yesterday during her LP, that's what is causing all of her symptoms." Oh, thanks. I've been saying that was weird all along, but I guess no one listens to me. Anyways, they are going to treat it with antibiotics at home and watch the fever and stuff. Im thinking there is still a chance that she ALSO caught the virus from Taylor (they said Jade has it too, but she doesn't really have the symptoms Tay has, so she must have not gotten it as bad). So I will just be watching her today, but they said the ANC jump is a good thing, it means her body is reacting properly to fight this off. That is good news, so I'm sure she will be fine.
I just got home from the ER and it's late, but I wanted to update, so this will be short and sweet b/c I am quite tired. Her fever went up and stayed up for a couple hours, so the onc wanted us to bring her in to check her blood. I told the doctor that the cough started right after the sedation for the LP today, and that she had thrown up during the procedure. She had absolutely no symptoms before that, and from the moment she woke up, she was hacking up all kinds of gunk. He wanted to x-ray her lungs to make sure none of the fluid got in there when she threw up, and they saw a spot on pnemonia in her lungs. So they are concerned, but our onc (he's the best) let us come home to sleep and we will follow up tomorrow and see what they want to do. I couldn't believe it because it came on so sudden today, but the ER doc said that this type of pnemonia is symptom free until it shows up suddenly, and one of the signs is a very high white blood count. That is in a normal kid, so chemo kids are different because their counts are so wacky, but her WB count did go up a lot. In fact, her ANC is now 5000, this morning it was 2100. So I am nervous, but I think they will get it under control easily. We'll know more tomorrow. Please pray that it will go away quickly.
Can you say - FREEDOM??!! We've been doing the freedom dance all day, because Brinley's ANC is up to 2100!!! Which means........we can do whatever the heck we want to this week! Yeah, baby! We are really happy. That is quite a jump for her in one week! They said she has no restrictions this week, so we are feeling free as birds~~
The LP (lumbar puncture) went fine, she didn't do great with the sedation again. We talked to the anesthesiologist ahead of time about what happened last week, and he said he would watch her very carefully. Afterwards, he said she threw up during the procedure, and vitals weren't great again, he thinks it is because of some congestion she has. But he said just to tell them every time she gets sedated, and that way things go smoother because they were prepared for it. He said it helped for him to be prepared for her vitals to drop. They kept her a little longer after she woke up because he Heartrate was a little low periodically. By the time we left, she was fine. She has one more LP next week, then she shouldn't have to get one for quite a while.
Now for the bad news, Tay and Jade went to the doc today and both have a virus: sore throat, fever, stuffy nose, cough. It's not strep, so no antibiotics will help. I kind of wish it was, because they wouldn't be contagous after 24 hrs of having the medicine. In this case, they are contageous the whole time they have it, up to 10 days. Yikes. Now Brinley is running a fever, 100.7. So we may actually get to go the ER if it continues. She's had a yucky sounding cough ever since the sedation, so I have the feeling we are too late to keep her from catching it. We are still keeping the girls in their rooms all day, but we'll see, we may be back at Hotel Hospital.
We are very happy, though, and feel like we are finding a new normal, getting used to things. It will be nice to take Brinley around this week, and hopefully this whole month. She'll be happier too. Have a happy day, Y'all. (Kathy, that's for you!)
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