Frustration, but progress

So our movement forward suffered a frustrating setback. First of all Dr. Carter is testing for a Carnatine deficiency, which means all Carnitine needed to be out of Jasz’ system. So Dr. Carter told us to stop giving it to him, “for at LEAST 2 days before the test.” Well my interpretation was AT LEAST therefore, more is probably better. So I took him off of the supplement that day. Thinking I would go in Monday and he would have been off of it almost a week. The other frustration, which ended up being a comedy of errors, was that she wanted to run some urine tests. Do you have any idea how hard it is to collect a urine sample from a baby? They give you this bag with a hole cut out in it and the hole is surrounded by an adhesive. For boys you stick their little penis in the bag and stick the bag to their skin and hope and pray that when they squirm, scoot and crawl around, they don’t tear the bag off or lift up the adhesive so that the diaper absorbs it.
Well, Dr. Carter had told me to put the bag on the night before we were going to take him in, put the sample in the bottle they would give us and put it in the fridge. I decided to “collect” the sample during the naptime figuring he is active enough that a whole night was just asking for trouble. Well so was a naptime as the bag didn’t stick right and ALL of the sample went into the diaper and the bag was unusable.

So, on the day of the test I take him in. I immediately ask for a new bag. They called us back and they placed it on him…hoping they would have more success. Then they made me wait and wait. Finally they came and told me that they didn’t know what one of the tests were that she had requested. So they had a call in to Dr. Carter’s office and they recommended that I go home and they would call me. Ok so no go…argghhh!!

Well, meanwhile the bag is still attached. Eventually he peed, but a lot of the sample went into the diaper. But I brought in what I had immediately. They told me it was only enough for one of the tests she wanted. I figured that’s ok we’re half way there. They gave me a new bag and said they still had not talked with the Dr. So we went home.

Later that day they called me. They said that one of the tests he had to be fasting four hours prior to taking it. So we worked out a time when there would be 2 phlebotomists there and it would 4 hours since Jasz had eaten. She also told me that she had to throw away the hard earned sample as it had to be collected fresh and flash frozen on site. Since she hadn’t paid attention to that the sample was no longer useful.

Tuesday we go in at the appointed time and it instantly becomes clear that neither staff member is comfortable working with a baby. We put a pee bag on him and brought him in the back. I held my poor screaming child on my lap while the one tech tried her hand and torturing my child. Our poor boy held so still, as though he had already learned how to have his blood drawn (too young for that lesson in my book). She stuck the needle in and then grinded around in there for a few minutes and got nothing. They bandaged the arm up and the second tech tried the other arm. She pretty much did the same thing. They bandaged that arm. Both looked at me and said “what do you want to do now?...we don’t want to try again.” Well they shouldn’t have “tried” in the first place. They knew he was a baby and they scheduled it with me….they should have told me then they didn’t work with children instead of experimenting with my son!!! They then suggested I go to their other office as the tech who drew his blood the first time was working there that day. Then they looked at the clock and realized they would be closed by the time I got there. So they suggested I come back on Thursday at the same time and try again. They removed his pee bag and gave me a new one.

After thinking about it for an hour I realized, “hey I wasn’t happy with the first lady either. It took her three tries to get a vein!” So I called Dr. Carter and told her I needed a place that dealt with children. I found out that meant a trip to SB. I did my homework and found out the right person to go to and that meant I had to go in the afternoon. It also meant it would have to be delayed because I couldn’t fit it in my schedule this week.

Meanwhile, he is off of his supplement and it is making small issues. One he was becoming fatigued quicker. Also, now it could have been a coincidence, but he from Thursday night on was having night waking and inconsolable crying, which he had not had in months. Prior to the Carnitine he was having inconsolable crying bouts about every 4-6 weeks. We hadn’t had one since May. It suddenly started again. Now someone pointed out it could have been growing pains. And who really knows he wouldn’t tell me what was bothering him so really it’s anyone’s guess. But I can’t help but think it is at least a little related.

After a lovely weekend visiting with friends I took Jasz down to SB. Before getting in the car I strapped on the pee bag. When I got into the hospital lab, I immediately checked the bag. We had the biggest sample yet, but a lot had ended up in the diaper. They told me it was not enough and they put another one on him. This phlebotomist was GREAT!! Her name is April and she works in the Cottage Hospital Lab…worth the trip if you’re dealing with little ones. She got his vein on the first try. Now his poor little vein petered out so she did end up having to use his other arm too. But again on the first try. He was such a brave boy and Jasz actually stopped crying half way into the draw. Like he’s an old hand at this now. But by the end we still had no pee. So, he and I went to the Cafeteria and had a mother son lunch together. I made sure he drank a whole cup of soy milk and we played and ate. Went back to the lab and no pee. April was about to send me home and then she says, “you know what why don’t you hold him, turn on the sink faucet and let him play in the water. The sound of it sometimes helps.” So we tried it. He was super happy to be playing in the water and after a few minutes we checked the bag. It was full enough and not one drop had spilled into the diaper. Yeah for camp tricks!!

Now we wait. It will be at least two weeks (so as of now about one week left) before we have results. Because of this I rescheduled our next round of Dr.’s appointments. But we are still progressing in therapy. We have noticed he really holds his right foot out at an angle. Trina’s impression is that he’s comfortable that was and he probably feels more stable. But he was doing that with both feet and now it’s only one…so it likely will self correct over time and as he gets stronger. He didn’t go backwards in terms of skills he learned using his muscles being off the carnitine, it did by the end of 2 weeks really affect his stamina and he is still trying to get that back. He is also back to scooting more than crawling where he had been readily crawling….he’s sometimes resistant to that. That could just be him asserting himself though. So, we are now in the waiting and you will know when I know more.