Dr. Demain felt that Alana was having sinus issues. Yes, she was a baby and sinus cavities are not formed and yes it’s unlikely that a sinus infection started in her when she was 3 months old but she had signs that lead him to think that. She had developed saddle bags across the bridge of her nose. She had dark circles under her eyes. Labs were done and she was having elevated white counts and CRP levels (C-reactive protein is a measure of inflammation on the body). His theory was that the cough was being caused by drainage dripping down the back of her throat and causing irritation. If we could clear the infection then she should be fine. This was going to be done by starting her on antibiotics above the normal amoxicillin (which we learn she’s allergic to) or z-packs. She had a series of x-rays done to see if the bitty sinuses she did have were compacted. I need to back up though; one of the things that I’ve failed to mention is that by 6 months of age Alana has had so many ear infections that I’ve truly lost count. That tied into Dr. Demains thoughts as well. If she was so blocked up then the ear infections could be a direct relation to her whole head issue. So onward and upward again. He starts her on stronger antibiotics, a 6 week course of Clindamycin. After that we will redo her sinus x-ray and hope that the coughing will stop.
Okay, alright, no worries…the coughing hasn’t stopped. I think she’s even managed to get another ear infection on top of all this. She’s continuing to have multiple things going on here. She’s falling further and further off the growth charts and she’s having rashes on her truck and legs. Her feet have started to peel so bad that she cannot walk; the skin is cracked and bloody. Her teeth have started to come in and they don’t look right. They are tan looking and pitted. We take her to the dentist and they ask if I used a lot of antibiotics while pregnant (no) or if she was a preemie (no, remember the “overcooked” comment). Again, now what the duck chuck is going on. We were seeing either Dr. Demain or her primary pediatrician every week. From her primary we were getting “Kids are sick all the time” or “We see children like this all the time in the office and they outgrow it” finally what became one of my favorites, “If you hear hoofs in the distance you think horse’s not zebra’s”.
All the while we are trying different antibiotics and different approaches. We’ve moved onto drugs like Ceftin, Biaxin, Sulfatrim, Predinsolone, Prevacid, Nasonex, and Albuterol. In a time period from January 2005-January 2006 she was on 17 different or repeat courses. Now tell me, where in the bloody hell was I?? Why didn’t I take more notice that my baby, my 16 monthish daughter, was on more drugs than most geriatric patients?? Yes I understand that again, nothing I can do, can’t go back, shouldn’t beat myself up over things that I didn’t know. The fact still remains that I trusted the doctors and they didn’t come through like they should have. My bad.
Now after 6 months of straight antibiotics things actually get worse. Alana was running a fever for a few days, nothing that unusual, but this time she was different. May of 2005 now and she seemed to be having a hard time breathing. We took her back to the primary and for the first time there is something very clear going on. She has gotten her first pneumonia. We were admitted straight from the primary’s office and she was given more antibiotics, more steroids, and albuterol. She tested negative for RSV, and other bacterial infections. She did however test positive that she had already HAD Epstein-Barr virus. Not that she had it then, but that she’d already had it and gotten rid of it. Now at the time the doctors chalked it up to a mistake with the lab. There was no way that an 18 month old had already contracted and gotten over EBV. Another thing that they take note of with Alana is that she’s again got an elevated CRP level. Normal range is below 12 (normally) and her’s is 30.
We do our time in the hospital and now both Larry and I are asking more questions. More detailed ones. How in the world could she have gotten pneumonia when she’s been on antibiotics for 6 months? How and why is this going on? We leave the hospital and are home for 2 days. She’s running a really high fever again and we rush her back to the doctors. She’s now got “otitis media with perforation”. I don’t know who cried more that day, me or her.
We spend the next months battling infections. Her skin, her ears, her body. We try more drugs. More time. More everything that we are told. The infection in her lungs doesn’t really go away now. She’s always coughing and she’s breathing faster with each little ear infection. She’s constantly miserable and we can seem to do nothing that will help her.
By January of 2006 we go and see an ENT on our own. He looks at her history, she’s at 30 or so ear infections and there’s been some mention that maybe her adenoids are large and causing blockage. That if they are removed, then possibly her sinus cavities can drain and stop the backing up of her face. The ENT we see is great. He feels that PE tubes would have benefited her awhile ago. He also believes that he can look at her adenoids while he’s in doing her ears and if they seem enlarged then he will remove them. We agree and in the middle of January she undergoes her first surgery.
I cried. I admit it. I was a wreck when they took her. She didn’t care. She was in la-la land with the help of some versed. I think when you are waiting for them to come and let you know that everything is A-OK time stands still. It’s so strange. That surgery was the first procedure that she truly had and it was the one I cried the most at. It had been such a long road and when they even hinted that she might be better after this. No more cough, no more ear infections. No more antibiotics. There was hope that this would end.
She pulled through like a champ. They adenoids did need to come out and they were large. Dr. P put the tubes in place and came out and told us how wonderful she had done. We waited to see her. And we waited. We saw kids who went in after her come out and go home and yet we waited. Finally after an hour or more they came and got us. It seemed that Alana didn’t want to wake up. She was quite fine in la-la land and was not to be disturbed. Well this wasn’t good enough for a nurse there. She got the bright idea to wake her up. Mentioning something like, “Oh sometimes they just need a little help waking up…”. Famous last words! Needless to say after Alana screaming her little head off for 45 minutes they decided that she was well enough to go home. Yea thanks lady. We had to listen to that screaming for another 4 hours. Again, looking back this showed us something with Alana that would come in handy in the future. If only I hadn’t been such a slow learner on that one though.
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