Feel Good Inc.

It had been three weeks since I had been there for an appointment.  Last week I went for the bronchoscopy and the week before I was able to skip due to me doing so well.  Yesterday Gram and I headed to an appointment in NYC.  Getting around this time was much easier getting around.  I had no trouble remembering the way to go.  The week before I had been with Dad and he was taking me all over the hospital.  He had no trouble getting from one place to the next.  He was always good with directions.  I was getting better at where I needed to go, but it did help me to have a guide show me.  Lol  After going with him I had it down pat.  Grandma was still a little unsure, but I was confident.

We did our normal routine.  First we headed to get my x-ray which went quick this time. We then went over to do PFT’s.  The room had quite a bit of people and I knew it was going to be a wait.  We decided to pull out our lunches and eat some of it.  I was hungry anyway.  They called me in shortly after I finished my food.  First they weighed me.  My weight is up to 90 pounds.  I then did the PFT's.  This time the PFT’s were 82! I love how they are climbing.

We then headed to the appointment.  We were a little behind because of the wait for PFT’s.  I had to rush and get my blood work done.  The Cyclosporine levels have to be drawn eleven to twelve hours after I take my night dose.  We were a little past twelve hours so I wanted to get in there ASAP.  I told them my blood work was for levels and they called me in immediately.  After that we just waited in the waiting room for the actual appointment.

The appointment was again all good news.  The results from my ultrasound last week showed that the clot in my neck is gone.  This means no more Lovenox!  I am ecstatic about this.  My poor legs can’t take any more of that shot.  She looked at my x-ray and said it was improved from the last.  She saw more healing and everything was looking good and because it was healing so nice I can stop getting an x-ray done every time I come in.  I am young and she wants to limit my radiation exposure when possible.  She did tell me that if I come in and I feel sick at all to go and get one.  This includes anything like feeling short of breath or a sore throat.  She is happy with the increase in PFT’s and said that she couldn’t ask for me to be doing any better.  If she had a Christmas list of everything she wanted, I have met them at.  It feels so good to be told I am doing great health wise.  Hearing that will never get old.

Earlier today I went to Children's hospital to see my nurse Lisa.  I was not able to go into the hospital yet due to risk of infection so she came outside to me.  I went during her lunch and we were able to do some catching up while she ate.  I hadn't seen her since she went to Europe so it was really nice to catch up with her.  She was so excited to see me.  When I get the OK, I want to go in and see some more of the nurses on V10.  They took care of me when I was sick and I want them to know I think about them a lot.   They always see us at our worst.  They should get a chance to see us when we are healthy too.