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.

Monday, July 12, 2010

Hospital Day 5 / Got Me Thinking

I'll start off by acknowledging that the 2nd phlebotomist to draw Tyler's blood did it in a matter of seconds with NO problems!! I graciously thanked her too!

Monday (Day 5)

Lung function (PFT) was down to 42 today. I was quite concerned about the decline but found out from my buddy Kevin that doctors have told him PFTs can actually vary by 2 to 4 percentage points. The doctors say Tyler sounds much better today, the wheezing and crackling have diminished. We're on contact precautions (MRSA and Pseudomonas) so we're confined to the room most of the day. He was, however, able to go play the Wii and play kickball with Physical Therapy upstairs. Thumbs up!!

Tomorrow we get our PICC line replaced. 

So today I'm ill and testy. It could have something to do with being a female so I'm justified!!! ☺

Things that got on my nerves today:

1. Blood draw at 5:30am. REALLY?? 5:30A.M!! Is that NECESSARY???

2. 6am Respiratory Therapist comes in our DARK room where we are SLEEPING! Tyler stirs long enough to do his albuterol and then drifts back to sleep. The guy then proceeds to wake me up to ask what time we went to bed.
           A few things to consider:
                a. I'm grown.
                b. Its none of your business.
                c. I don't answer to you.
                d. You wake me up again with a stupid question and the attitude is 
                    coming out to bite you. I'm just saying!
(By the way, I responded to him by firmly acknowledging that I put my child to bed at a proper time and that we are tired from waking up every hour by beeping IV and oxygen machines.)

Got Me Thinking.......

As Ty coughs more, I am beginning to see where it bothers other people around us. You can see the fear and concern on their faces that

1) something must be wrong with Ty since he's coughing so much
2) wondering if he's contagious.

We went to see Toy Story 3 and right before the movie started I began to wonder what I would do if he started coughing again. How unfair it would be to others to let him sit there and how sad it would be for him to miss the show and feel embarrassed at having to get up and leave every few minutes. I started getting anxious about Ty having a coughing fit and I had to mentally talk to myself about remaining calm and to cross that bridge as I come to it.

I also had that "Ah-Hah" moment that THIS is what all those other CF parents were talking about!!!

1 comment:

  1. Hey! I read your blog. And it's funny how we (CFers) can relate to things. Like the blood being drawn so freakin early & the horrible beeeeep of the IV machine. I hate those things as well! But not just that, but what you said about when he Coughs. I know that people look at me weird. But we can't help it...ya know!? But it does make me feel a little embarrased when i cough and cough and cough for like 15 mins straight. But anyways, I'm just thankful for others out there I can relate to, and help deal with this disease. But I hope things improve FAST! Being trapped in a hospital room isn't fun for a child. But it can be miserable for an adult too. But his health is most important. Talk to ya soon! ♥ ♥ ♥


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