WARNING: This is a very long post probably containing many typos and gramatical errors. Read at your own risk!
It’s taken me awhile to write this all out. How do you put into one post weeks, months, years of stress, anger, and worry. I’ve had my moments of feeling weak and the “why me’s?” But, overall I’ve held onto my faith and hope that in the end it will all be right…until today. I feel broken down and beaten. I’ve cried a million tears, cursed a hundred phrases, and questioned whether there really was a god and why he feels I can handle all of this. Surely, he doesn’t realize that I’ve reached my breaking point.
Some of you may or may not know about Emma’s ongoing struggles. Since birth she’s had numerous respiratory issues, reflux, feeding issues, failure to thrive, etc. Last July we began the process of tube weaning her. It was fairly uneventful. She lost weight but gained it back quickly. She began eating everything in site. She eats more than the other 2 kids at any given meal, constantly snacks and all in all is just a big eater. The problem? She’s LOST weight since last august. She also seems to have bouts of abdominal pain, and abdominal distention.
She’s had diarrhea off and on for no rhyme or reason, and her stools are always really foul and somewhat greasy/weird looking. Fast forward to about 6 months ago. She began to get weird rashes. Small areas, here and there quickly fading. We didn’t think much of it until last Tuesday when she woke up from head to toe in hives with huge welts. Poor baby was in so much pain. We took her to urgent care and they gave her a shot of steroids and sent us home to follow up with her pediatrician 2 days later at her well baby. The steroids seemed to work and by bedtime she was fine. The next morning, Wednesday she woke to an even worse state. I thought she couldn’t look worse, her eyes were swollen and squinted, Her cheeks were swollen, her feet swelled so bad with hives I couldn’t get her shoes on. Off to a different Emergency Room we went (our regular doctor area). The pediatrician asked the usual questions. Have there been any changes in soaps, detergents, or anything in the house? No. Any new foods? No, and her allergy panel was negative for all foods. She contacted a dermatologist and allergist. Of, course this was by phone and she can’t get in to see the dermatologist until March 24. They put her on Zyrtec (an allergy) med in the hopes that it would help. She’ll be on that until she gets to the dermatologist for a skin biopsy.
To date she’s been tested for celiac. Negative. Food allergies, Negative. Anemia: pretty severe (she is also very very pale and bruises easily). C. diff. Negative. She also had the normal cbc’s and all that. There are a few other tests which I can’t remember right now, but all her labs are pretty normal. Her electrolytes are off with sodium and potassium and one other is elevated, but they’re waiting on the rest of her labs to come back before delving into that one further. We’re also waiting on the results from her fecal fat (which could indicate an absorption issue), fecal elastace, and one other fecal test.
So, today she woke up with more hives but since there’s nothing we can do aside from what we’re doing we headed off to the pediatrician for all 3 kids well child physicals. Guess what? More bad news. Or should I start with the Good news?
The good news is lily is perfectly healthy, growing well, looks good. She may have a uti so she did have a urinalysis done. She does have some speech issues so she’s being referred for a hearing test and for speech therapy.
As for Caden, he passed his eye test with flying colors. His hearing test his left ear was fine, but there was a significant difference in his right ear and he failed on his right ear. So he’ll be referred to the hearing specialist as well. He’s grown just about an inch and a half in the last year but unfortunately has not gained ANY weight in the last (almost) year and a half. They’ve of course watched him closely over the time. It seems he teeters between 38-40 consistently. He eats fine (like any other toddler/young kid really. Some days picky, some days everything in sight. He’s also been off and on pediasure. He’s always been pretty skinny since he was a baby and I guess you just get used to seeing a rib cage. It was a blow to hear he had gained no weight. He also has a very significant chronic cough, most likely due to asthma, but it doesn’t respond well to flovent or albuterol. He’s being referred to an allergist as well. And because of his issues and Emma’s they are also doing a cystic fibrosis test on him, and a thyroid test.
Onto Emma, well, we finally found a doctor who seems as concerned as us (not that her others don’t) but her g.i. especially is very conservative in testing and plays wait and see a lot which is not ok, when you can literally watch your child fall apart. It hurt so bad when one of the first things she said about Emma is, “This is not a healthy child, she LOOKS sickly.” It wasn’t said in a mean way, but a rather concerned manner. I almost lost it in the office. While it was hard to hear it was also a small relief to have a doctor validate what we were thinking and feeling. She’s pale, her rib cage shows, her tummy’s only chubby when it’s distended because she hasn’t pooped (we’re talking in between her diarrhea. Her stomach goes flat for a few hours between stools). She just looks, well, sick. They took more blood and are also doing a cystic fibrosis test on her along with some other testing. At this point I really need to pull out a notebook and begin taking notes because I can’t keep track of everything with her. So now, we wait and see. She hasn’t really gained any weight. She has grown 3 inches though, YAY. Her speech is fine and her hearing wasn’t tested, but I’ll assume it’s fine, unless she gives us a reason to believe otherwise. This girl is SO tough though, she’s been poked about 8 different times in the past 3 days and still smiles. She does have quite a few more irritable moments, but what can you expect.
I came home and just bawled. I haven’t cried like that since the nicu days. Of course Sean is just as worried. Out of the blue tonight he started looking for video camera online and decided we need one. NOW. His reasoning “just in case”. It’s really hitting us hard and the not knowing is the worst. It’s hard to stay positive, and think positive, especially with everything hitting at once. I just want our lives back, I want us all to be healthy and happy and be able to move on. In the meantime, prayers and good thoughts would be greatly appreciated since we’re not holding up well on our own anymore.
If you’ve made it this far, thank you.