I am the mom of a 10 year old son with Cystic Fibrosis (Ty) and an 11 year old son without CF (Bran). This is my journey as I balance Ty's needs while giving Bran the love and attention he deserves.

Sunday, July 11, 2010

Hospital Days 1-4

Thursday (Day 1)
We were admitted after our clinic visit. We went up on Vancomycin from 440mg to 600mg. So far the red man syndrome has not come back and we're not even doing benadryl! Thumbs up!  We've added intravenous tobramycin and he is on oxygen while he sleeps.

Friday (Day 2)
Today we had Ty's hearing tested. He's never been tested so we needed to get a baseline on him, especially since he is on both the intravenous and inhaled tobramycin. The test came back normal, his hearing is fine! I think it only took about 15 minutes and we received the results immediately. Ty's oxygen levels kept dropping so he remained on O2 until lunchtime. After that he maintained levels of 96/97 on his own. Today Ty had to have blood draws because of the change in dosage levels for the vancomycin and the addition of the intravenous tobramycin.

Saturday (Day 3)
Tyler was quiet all day today. He hardly spoke a word to anyone. Bran, Me-maw and Papa came to visit so Bran and Ty played on the laptops all day. It was pretty odd to not hear Ty talk and shocking not to see that infamous attitude of his for an entire day. ☺ Oxygen levels stayed low all day so we kept the O2 running. We had another blood draw to monitor kidney levels.

Sunday (Day 4)
This morning we were awoken to the nurse freaking out over Ty's PICC line. Undoubtedly he had completely wrapped himself up in the cords and had pulled his PICC line out a little bit. I think she drenched and scrubbed his arm in alcohol for fear of infection. I got kinda tickled at her because she panicked but it was comforting to see that she cared and took extra precautions to try and 'save' the PICC line. The doctor was paged and an x-ray was done to see where the line was. The line is no longer "central" but it is still okay to use to administer the IVs. The IV dosages remain constant, however the concentration has been changed to accomodate the misplaced line.  Tomorrow a team will come in and will either push the line back up or will thread a new line inside the existing line.  I had no clue they could do that so it will be interesting to see! O2 levels are still low so we're still wearing the O2 nose piece. 

Today the doctor asked if Tyler ever talked to me about his CF, how it makes him feel, his fears, if anything worries or bothers him, etc.  I've asked Ty about his feelings but he didn't voice much. Our conversations usually come up when I prepare him for a scheduled procedure or when we need to talk about compliance with his medicine and treatments. The doctor is going to have one of the psychologists come and talk to him to make sure there are no unmet needs.

Another blood draw a few minutes ago. When the lady stuck him I could tell she wasn't good at what she does. She stuck him and went WAY into the vein. I could see the tip of the needle trying to stick out of the skin on the other side. She then proceeded to move the needle around in the vein while Tyler cried in pain. She did this 2 times. Her time and opportunity is up. She'll not stick him again. The next one better get it right or this Mama is going to get mean.

1 comment:

  1. You and your family are definitely in my prayers. And, I would definitely make a stand against that nurse!


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