Day by Day

A mama blogs the journey to transplant and beyond...

Monday, October 23, 2006

Once a Week


Whew. Everything went smoothly today.

This morning we got ready to go to the hospital and left the RMH by nine o'clock, give or take a couple of minutes. We arrived at the hospital and went through admissions to receive lab slips for the blood draw and then miraculously there were no people waiting to have their blood drawn. Sometimes it can get swamped, especially when all of the transplant kids come through in the morning before they take their Prograf.

We got his blood drawn quickly, no digging around for a good vein, they got it on the first try. And that's the way his veins will draw as long as they have a week in between draws. His little veins cannot support daily blood draws - we would run out of spots. That's why the PICC line was so important in the beginning, but it came with it's pitfalls. It's a double-edged sword, that PICC line.

We arrive at clinic a full half and a hour before our scheduled 10 am appointment. I figure this will give the nurse enough time to round up a team to place an IV, but I figured wrong. Also, they won't order the medicine until they have a line placed, so after we place the line we had to wait until the medicine came before we could actually begin the infusion.

The IV nurse came in and was eyeing his chubby little arms and his feet, but right away I mentioned how we had success on the first try with the IV in his temple. She wanted to do an arm or foot, but I convinced her otherwise and she placed the IV on the first try. It went beautifully except for the fact that Joaquin is a sweaty little beast and the sticky dressing that holds the IV in place did not want to stick, they even wrapped some bandage around it. I ended up having to actually hold it in place, which wasn't so bad because Joaquin was a little worn out from his screaming fit while they were placing the IV, and so he relaxed on my lap and watched some TLC with me. The infusion only lasts 15 minutes, but since they placed the IV in his head, they ran it at half the amount of time - so it ended up lasting about 30 minutes instead. Which was fine by me, I was just grateful that they had placed the IV so quickly - I just wanted to do the infusion and get out of there.

So even though we arrived at the day hospital at 9:30am, the infusion didn't actually start until around 11:30am and we weren't completely finished (because after the infusion is complete, they want to "monitor" him for another 30 minutes) until about 12:30pm. And you know what? I didn't even raise a stink when they were lagging and made us wait a long time. I think even though my hospital tolerance has gone down, my patience has gone up... Just a little. I'm still going to keep them on their toes - in a good way, of course.

After we finished the infusion we went straight over to transplant clinic, as is the usually norm for Mondays. We were running late and I had even received an "urgent" call from one of the receptionists wondering if we were coming to clinic today that scared me because I thought it was Amy calling to say that something was horribly wrong with Joaquin's lab results. I stressed all the way over to clinic with butterflies in my tummy and everything. I think the main reason why I was stressed is because I'm a little more responsible for making sure he receives the full 2 liters of fluid every day and now that we're not doing 24 constant hydration. I need to make sure that throughout the day he received the other 1 liter of fluids that weren't given overnight. But I had been doing a good job with it, so there was really no reason to worry, but I still did. Especially with all the rejections and threatened rejection going on around me. I need to remind myself on a daily basis that every child is different.

We saw the nurse Amy and Dr Alexander even made a guest appearance and had nothing but praise for Joaquin. And of course Joaquin hammed it up for Dr Alexander - giving him his cutest faces and his funniest noises. Amy still hadn't received the lab results, but I expressed my concerns and worries that I had been having and she seemed reassured that everything would be alright. She said she would call me later in the day with the results.

Around 4:30 and 5:00pm I still hadn't received work from her. I'm taking it as a good thing because if things were not right we would get a phone call immediately. Anyway, she called with the news that his creatinine looked wonderful - 0.24 - and his Prograf was not back yet but since we're going down to just once weekly blood draws it wasn't urgent that the doctor call us tonight so we could expect to hear from her tomorrow morning. I think I was finally able to breath after that.

I'm not sure when our next clinic appointment is - whether or not we see them on Thursday or Monday. It's a nice feeling to look forward to another week filled with doing thing we want to and just getting ourselves back to normal.

Joaquin's throwing a bath toy out of the tub cause it's what he likes to do best.














2 Comments:

Anonymous Anonymous said...

Yay!!! Glad today went well & that lil cub is enjoying splashing in the tub!!!!!!:)
Much Love,
Meghan

11:07 AM  
Anonymous Anonymous said...

I *love* these photos - Joaquin is such a doll!
I'm happy to hear that things are going so well; what a tough guy!
xoxox
Kate

7:18 AM  

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