Totally unrelated to the post, but I think he's ridiculously cute.We have had a lonnnnggggg week. Nolan hasn't been napping well. Or sleeping well at night. It is raining incessantly, and the long list of laboratory tests was looming large in my mind. So I decided to get it over with and started the testing marathon yesterday.
I stopped by a local satellite lab to see about the testing requirements. The GI doc didn't say if the blood work had to be after a fast or not. I also wasn't sure about the whole stool sample collection deal. The thing stressing me out the most was the urinalysis, because Nolan is unable to voluntarily void. Getting a "clean catch" is quite the ordeal.
They sent me to the main lab at the hospital to pick up the stool sample supplies. There was a long list of forbidden food for the occult blood test card. For three days prior to the test, Nolan wasn't supposed to have eaten any bananas, grapes, melon, etc. Not a problem, since he isn't eating most things. I took the bags of collection materials home and managed to get sufficient material by the end of the day.
Nolan woke up at 2:30am today. And didn't go back to sleep until 6:00am. My patience is shot. And I have to get a urine sample. I gave him some water (which was allowed prior to the blood work) and waited. And waited. And waited. NOTHING. I gave up and we went to the lab to get the blood drawn. They drew about 7 or 8 tubes, and that was with consolidating the tests as much as possible. I certainly hope we get some answers with all of this testing!
Then we tried to get some urine again. I had two boys in the laboratory bathroom, two boxes of apple juice, and waterproof pads spread on the floor. I begged, I pleaded. No dice- it just wasn't going to happen. After an hour and a half in the laboratory bathroom, we gave up and went home. I did finally get a sample using a urine collection bag, but these are easily contaminated and are not considered a "clean catch." Whatever- hopefully nothing will grow and we'll be done with the whole mess. Because Nolan is a PUV boy, he may be quite delayed with obtaining toilet training milestones. I'm not worried about it, but goodness gracious it can make urine samples difficult! At least we didn't have to resort to a catheter.
Now we just have the excruciatingly long wait for lab results. We should get them at the follow up appointment at the end of August. I'm not a terribly patient person, so waiting is a challenge for me. Especially when my kid's health is on the line.
6 comments:
Oy, Leah -- you need a week at a luxurious spa. (Not that I've ever been to one, but aspects of it sound lovely. Not sure about being painted with mud, though.) I certainly hope all this results in something definitive and fixable.
ouch ouch......what difficult times these are. I tried also at my hand at the clean catch for her urine samples. it is tough.You need a break.
Leah, check this out:
http://www.silkawear.com/
They are exactly like pilot caps, but they have mesh sides and are designed especially for pediatric CI and HA users. There was a post about them on cicircle. I don't know if this would help with Nolan's aid removal propensities, but I thought I'd mention it.
Julia- thanks for the link! We've really been struggling with his hearing aids lately. Sometimes he's good with them, and other times he throws them an impressive distance. VERY frustrating! We're really noticing some difficulties with low-frequency discrimination (where he hits 60dB- the word Nemo would be pronounced "me-oh" by him), so I'm getting a little stressed with his aid-tossing behavior. Not that I let him know that I'm getting distressed, of course. KIDS!
I'm just taken back in time (both in years and in days) when I read your posts. I mean, Ethan has always been small like Nolan, I think he was still at 20 lbs well into his 2nd year. He had the upper GI, the scope, the Ph probe, etc. But we didn't find a GI doc that was nearly as thorough as yours, not even close. I eventually took him to a metabolic clinic to get all the other labs done and that has been what has ultimately led us on the path of healing his gut and getting him to eat.
When we removed casein and gluten from his diet and followed the results of the IgG tests, that's when he started to develop an interest in food and now I can't keep him out of the kitchen. He's still really low weight and thin, he wears a 2T around his waist and he's nearly 4 years old. But the fact that he is interested in a variety of foods and eats like a horse is all due to the diet changes. No medication worked for him like this diet has. So if all else fails (God forbid), you've always got that to try!
I know how exhausted you are...Ethan has been getting up at 11 p.m. and staying up for the remainder of the night and the entire next day. I'm losing my mind over here! Hang in there.
What I try doing when prisha is not responding to her name is I tell her i called her no. of times and since she did not respond, I shall also not respond when she calls me . It really works. Now I tell her i called you 5 times or 2 times etc.She is now more responsive. Try it maybe it works.
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