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.

Thursday, July 15, 2010

Hospital Days 6-8

Tuesday Day 6

Today Ty's PICC line was replaced. They actually came to our room and did the procedure in here. No gas was used, only meds thru the existing PICC line to put him to sleep. He was so funny and I hate I didn't catch it on camera. I desperately need a video recorder! I'll put it on my "tax return" list for 2011!! 

We found out today that Ty has the Rhino virus. Not only is he on contact precautions but now he's on droplet precautions as well. This means he can't leave the room to go upstairs to the recreation room. 

As the medicine started taking effect Tyler became incredibly entertaining. He would start this long, drawn out laugh and everyone in the room simply couldn't resist laughing with him. He kept trying to lift his head and his speech began to slur. The procedure took about 30 minutes. An IV was started in his hand in hopes of using his PICC line for blood draws on Wednesday. The vancomycin is hard on veins so I was kinda nervous about how long the IV would last. Also today, Ty was on oxygen long enough for the procedure but that's it! His saturation levels are maintaining on their own! 

Wednesday Day 7

Once again Ty has not needed oxygen!! Since we've been in the hospital I have literally napped throughout the day and slept all night. I don't know if I'm exhausted, depressed or what. We used Ty's PICC line for blood work today but the nurse says the IV may remain until Monday so that Ty doesn't have to be stuck for more blood work. I'm pretty unsure of this. There is no way his veins will withstand vancomycin 3x a day for the next 5 days. This also brings up new questions.... "Does this mean we're keeping the PICC line for another few weeks?", "Does this mean we'll still be here on Monday?". Today Ty laid around all day. He only got out of bed long enough to use the bathroom. His cough seems to be subsiding, although when he does cough it is still wet and productive.

Thursday Day 8

Today has been awesome!! We had a visit from Chaplain Bird, one of my co-workers. He brought cards and gifts for me and Tyler. Tyler LOVED everything and was super excited. Today was the 1st time that Ty was up, moving around and acting like his old self again. I am so blessed and thrilled that Ty has the ability to get better and return to his old self. So many of our CFers talk about how bad they long to be able to walk again without being out of breath. A trip to the bathroom becomes a 45 minute ordeal and being able to fix their hair becomes a favorite past time. I am making a conscious effort to be thankful for the things Ty is able to do. We take so many things for granted: walking, breathing, singing, bathing ourselves, running to the bathroom, coming and going as we please with nothing major holding us back.

I'm not a "social butterfly" but I have to admit that I thoroughly enjoyed Chaplain Bird's visit. I was so tickled to get cards from my co-workers and to see Ty's face light up with excitement over his gifts. His gifts were inexpensive but were priceless and meant the world to him. I had no clue that a small puzzle would bring him so much joy. I had no clue that a card signed by my co-workers would touch me as deeply as it did. I have signed so many cards over the years for others but I never fully appreciated its impact.

I've not slept at all today!! Tyler and I have played all day long. We've thrown a few balls around in the room, we've colored and played cards. Tomorrow Ty does PFT's again. I truly hope and pray that we've improved!! Judging by the day we've had, I think we'll do good!

Oh, I almost forgot! This morning our nurse came in and questioned Ty's IV lasting until Monday. We both agreed to take it out. When she went to take it out we found out that Ty had already pulled it out during his sleep!!!!  It was still halfway in his hand so the saline was dripping into his tissue instead of his vein. Luckily, the saline drip was extremely slow so there was only a little swelling. Ty said his hand was a little achy but otherwise okay. 

Its late... I've not had a nap today... I'm going to bed.  ☺  Sweet dreams!!

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