Thursday, June 12, 2014

Jacob, G and I made it to Orlando today. Brie was supposed to come too, but she has her first job interview tomorrow!! I'm so excited for her. Good luck to my beautiful Brie!!

After a terrifying drive in the pouring rain down I-75, the Turnpike and the 408 (honey my windshield wiper motor needs to be evaluated, third gear should go faster) we found a spot in the parking garage and went to Peds Oncology Clinic. We usually park at the RMH and walk over to Arnold Palmer, but it was raining and the house had called to tell us they were full that morning. They were checking to see if the other Ronald McDonald House at Florida Hospital had any rooms. Clinic should have been quick and easy, but I forgot Jacob's numbing cream and the nurse had to request his labels three times for his blood tubes. Tick tock. Then Jacob and I argued about weather or not his port should be deaccessed after his MRI contrast. I'm happy to report I won. It is safer for sterile reasons for him to stay accessed until he receives his chemo tomorrow and a lot less work, supplies and waste. He's always left it accessed. I'm not sure what the deal was today, but we worked it out. After labs Jacob was scheduled to have his 3 hour brain and spine MRI. I thought it was cool that I was able to do pre registration via the phone yesterday. I was told I would only need to sign in today. Lies! Supposedly my intake was incomplete and we waited 30 minutes to be seen at registration. While waiting Jacob's appointment time of 3:30 passed. I went to MRI and told them we were waiting and filled out the mandatory questioner I fill out every three months. Then I answered the same insurance information questions & gave them the same HMO card I do every time we are there for registration. Nothing has changed. I'm not sure why this aggravates me, a lot, but it does. So much that I find myself being snappy with the registration person and the boys. I mean how dare they call me and register Jacob and then make us do it all over again the next day. Yea, I need to get over it. Today I was mad because it made us late. Then when we did get checked in it took forever because they had to double check the orders. The brain MRI orders came from Dr. RK and the spine from Dr. Smith. They told me things like that disrupt the insurance. While we were waiting an emergency patient came in for imaging and Jacob had to wait for them to have their scan. Maybe it was all meant to be for that person to get the care they needed at that moment. That's the way I want to think about it. All of these hours in the car and clinic are hard on the boys too. Jacob stays sleepy and bored and Gavin is climbing the walls. 

Jacob said his MRI wasn't bad. He watched one of the Pirates of the Caribbean movies during his scans and we left the hospital around 7:40 pm, only an hour later than expected, which in reality is really not long. We've waited up to 5 hours before even being seen. 8 hours at Shands one time. That was awful. MRI scans every 3-6 months for the last 15 years I'd love one to get the easy button and maybe there's been one and I just don't remember. Any who.   

While waiting I was happy to get a call that our normal RMH did have a room for us after all. So here we are, snuggled in and as I lay here & listen to the boys snoring I'm worrying about results and things to come. MRI review and chemo in the morning. 

Opening myself and asking for my boys to feel God's peace and understanding...please bring it on!!! 

PS - my daddy's internal echo yesterday showed a severe value leak and he's seeing a heart surgeon Tuesday, which also means his previously scheduled appointment to the hemotologist will have to be rescheduled. 

Praying praying!!! Keep on praying.

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