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

and

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!!!

My blog...

is officially underway.  Wow!  I have much respect for everyone's pages now.  Designing these things are a lot of work when you have no clue what you're doing!  Well, there's no time like the present so shall we begin??

Tyler has had pneumonia since November 2009.  He woke me up screaming around midnight one night.  I thought he was just having a bad dream.  I went into his room and he was laying on his side.  He wouldn't move.  I assumed his stomach was hurting because he has so many tummy issues, but he assured me it was his side.  He was in so much pain and I didn't know what to do so I told him I would take him to CMC-Charlotte.  The ER was unbelievably easy and hassle free.  The ER doc immediately diagnosed pneumonia and put in a page to the on-call CF doctor.  To both of our surprise, we weren't admitted and was instead instructed to follow up with the CF clinic on Monday.  We did oral antibiotics for the next two weeks and was told our next appointment would be in 3 months.  I politely asked how we could be sure that the pneumonia would be gone in 2 weeks without a follow-up. So to ease my mind we were given orders to get another x-ray and bring them with us in 2 weeks.  The x-rays revealed that the pneumonia was even worse.  We went in to get our 1st PICC line and did home IVs (5) times a day for the next 3 weeks.

A month later we were back in the ER with the same symptoms once again.  This time Ty had strep throat and  again pneumonia.  Once again we followed up with the CF clinic on Monday.  During our visit  the doctor was heavily considering that we go into the hospital for a tune-up.  He said he would check on a few things and be right back.  When he came back he acted like everything was perfect, that Tyler was where he needed to be and he would see us in 3 months.  We were shocked.  Disbelief.  Did that just happen? Within 2 days Ty was once again screaming with side pain.  I called the doctors office and we were told to follow up with our Pediatrician.  You want me to do what???  Needless to say, the pediatrician's office repeatedly said we had to call the CF clinic back since it was pneumonia (and CF) related.  I finally had hem talk to Dr. Thevaos (we love you!!) and he agreed to see us. 

That was my final straw so we moved our care to the CF clinic in Chapel Hill, NC.  So far we have been totally blown away with the care that we've received.  We found out things we never knew, namely that Ty has polyps in his nose and that he cultured things I have never heard of.  We were given another PICC line and really high doses of antibiotics (Vancomycin, Ceftazidime and Septra) to combat the pneumonia, MRSA and pseudomonas.  Ty kept getting sick on his stomach and wouldn't eat, so we moved him home where we're doing 7 IV's a day, 8 breathing treatments and 60 minutes of chest therapy.  We go back to Chapel Hill on Thursday.

PFTs went from 62% to 59% (pre IVs), to 78% and 83% (during IV's).  Let's pray for even higher numbers on Thursday!