This summer has been completely crazy. Mostly good, mind you, but crazy!
This summer has brought us to the hospital more than we had thought it would. The current plan has us on the first 2 starting doses of Rituxan, in addition to her Remicade & SoluMedrol. So, we did her Remicade July 6. Since then, we have gone back up to the hospital twice- once for her new Rituxan, and once for Remicade. The Rituxan was the one they messed up our time for. Last week was her Remicade and Pulminary Function Test. Because we're just a mess right now with this stuff, when the PFT was scheduled, no one thought about how the Remicade needs to be monitored & ramped up every 15 minutes, so they had to disconnect her for the test. We really didn't mind hanging out, but the poor nurses had to stay an extra hour for us. Had I realized, I'd have come in an hour earlier! I guess it wouldn't have mattered much. We had an hour wait for a chair, and it took 4 pokes for a vein that worked right. Not a great way to spend the afternoon for her. Again, the stress and anxiety that the poor kid feels is just unacceptable. After the previous week's huge black bruise, even she is looking forward to the port. I'm thrilled that she's happy with the decision, but I'm a little pissed off that we have to even consider this, & even worse, that it is a relief.
She takes things in such stride that she seems to be at peace with all of this. I hope so! She is so amazing! We have talked in depth about the PFT. I had requested it because of her asthma acting up around the time that her Remicade stops working, which is usually when we're lowering the steroids. This has me wondering if the steroids are carrying her, if the Remicade isn't working because the systemic effects are starting to show, or if it's just a crazy coincidence. I don't really believe in coincidences in general. She knows that this was a hugely important test, and she did her best. My proudest moment? Instead of crying when they suggested closing the door of the test box, she said no and asked why. Usually she panics & gets upset. This was HUGE to me! Perhaps it's because the tester was amazing!!! She was a fast friend, and she had Emily feeling very comfortable. I was very thankful to have someone that obviously works well with children.
Where are we at with this right now? Well, next Friday we go back to the hospital for her Rituxan infusion. We have to be there at 8 A.M. That means I have to be up about 4 A.M. to get us there on time. That'll be interesting. I told them not to expect much out of me that day, like coherent thought. The following week on Thursday we are to drive back up for a surgical consult. Hopefully, two or three weeks later (I've lost track now) when we go back for her Remicade, they will place the port. We have been told that it takes an hour or so, but they set it up so that it's ready for infusion that day. This will work well because they say it may be tender for 2-3 weeks, but because Rituxan won't be for another 12 weeks, we shouldn't need to access her until the following month for Remicade. I think. We've talked about IViG if her immune system gets too low, but I'm still not really sure how that will work yet. We've discussed several possibilities. For now, I'm just trying to get the day after off... just in case.
Unfortunately, the doctor won't be in for our next appointment. We were slated to see her this past week, but we were out of the infusion room a lot for the PFT. I faxed in a note along with the report, asking them to please call me to discuss the results. I'm not sure that they'll be able to do that, but here's hoping. For anyone that may know how to read this, please feel free to translate! In my heart, I feel there are problems, but they can be helped if we get started quickly. I can deal with anything as long as I know what we're up against and I can be pro-active. One of my favorite mom's (THANK YOU for all that you do... especially just being you & loving me like ya' do!) told me that from what she knows, it's definitely off because the graph should be more parallel. I know she at least has asthma. I'm just not sure if it's her asthma or the start of pulminary hypertension. I'm praying for asthma. Asthma would be lovely in comparison.
*My 13 yr old is an old lady that turns purple* My 13 yr old daughter has Mixed Connective Tissue Disease, (Lupus) which means multiple overlapping autoimmune diseases. She has Dermatomyositis, & Juvenile Arthritis. Yup, arthritis. She turns purple when her hands and feet get cold, which can happen from A/C. She was first diagnosed at age 6. My 11 yr old son has Psoriatic Arthritis. All of these are Autoimmune Arthritis. We share so you can learn!
Monday, August 8, 2011
PFT down & a surgical consult coming
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