Today was a busy day! We got to see both IR for a tube change and genetics. I was so nervous about the appointments today that my diet up until dinner consisted of two cups of coffee, a little chocolate, two potato chips, and 2 waffle sticks. Yup, I don't really eat on days like this!
We made it up to Children's in good time. The parking structure was packed but they are doing construction on it again so the packed part was not surprising. My mom met me up there today.
Our first stop was IR to get her GJ tube changed out. They have to be changed every 3 months. She was excited at first for her hospital bands because we let her choose where she wanted them and she decided that today they were her bracelets. She loved holding the "stickers" too (labels). I love how she loves the little things about life!
They called us back to IR and different people came over to see us. When you are seen every 3 months they start to know you. We have been visiting the IR department since Jillian was 4 months old and when she had an NJ tube and PEG we never made it the 3 months without a problem so we were seen more frequently then.
I gowned up in the paper suit, hair net and led dress. She thought I looked funny. We went into the procedure room and she sat on the bed. She was not thrilled but did just fine. Then the radiologist came in and we got started. 3 month old GJ tubes look pretty yucky coming out. She cried but laid still for them. She is still at the point where I can district her from things. I think what she hates the most is being strapped to the table. It is pretty quick to change them out and we were headed back out of IR pretty quickly. I put the hair net on her as I was undressing and she thought that was pretty funny! Life is about taking advantage of the moment!
We then headed over to the lobby area so Jillian could look at the fish. Some people were handing out balloons and Jillian was really excited to get a star balloon (a mommy safe kind)
Then we walked over to the genetics office. Her weight and height are up a little however she always measures bigger on their stuff then anywhere else so I take their vitals with a grain of salt.
Our genetics counselor came in. She started talking about how with just state insurance there was not a lot more testing they could do that would be covered (state insurance does not cover a lot of genetics stuff) and then I told her that come the first of the year Jillian's primary insurance would be United Healthcare. You could see her expression change! She said that United is one of the BEST insurances for genetics stuff because they cover the most things. This is AMAZING news. One of the tests that genetics has talked about running for 9 months is a test that costs around $15,000! State insurance will pay about $1,000! Brent's old insurance made it clear that they would pay nothing for it, making the other $14,000 our responsibility. Now with the new insurance they are pretty sure that they will be able to get it covered. Until we submit for pre-approval we will not know for sure but they are very hopeful. They said that United understands how much money it can save them in the long run to run this test instead of hundreds of other "smaller" ones.
I am feeling relieved that we have a plan! It is going to take a while to do everything. Brent and I have to meet with a genetics counselor first (a 2 hour appointment) to talk about what we want to find out from this testing and then they submit for approval from the insurance company. That appointment is set for February. Then it will take around a month for insurance approval if all goes well. Next they will take blood from Brent and I. They already have Jillian's blood stored in the lab. Then they will run the testing on all three of our blood. This will take about 3 months to complete. After that we will meet with them again to talk about results. I am hopeful that we will have results by this by summer. There is no guarantee with this test, but there is hope.
We talked again about a muscle biopsy. That is still not off the table, however they would like to run this other test first because it is less invasive. (a muscle biopsy requires surgery, where this is a blood test) We might still end up that route at some point but not right now.
We talked a little about Jillian's odd symptoms. She has a strange rash that started on her face today. No one can explain these rashes and they go away strangely just like they come. Genetics got to see it today. We talked about Jillian's endurance and speech, and coordination issues. We talked about how her GI system seams to just stop working for periods of time and there seams to be no rhyme or reason (they thought the story of her randomly puking while checking out a Target a few weeks ago was funny) We talked about how we can't seam to make it 48 hours this fall without a neb. We talked about her reaction to the shot (they agreed too that her reaction is not normal nor ok) They said they are not sure if it is one thing or multiple things happening at the same time but they hope this test will shed some light on that.
I can't begin to explain how good it feels to have a plan. Good enough that I am less stressed and had a yummy meal at Cheesecake Factory and dessert!
I am seeing the pieces fall into place. This is one of those times were you can look back at the trials and see where God's hand was in all of it. It does not necessarily make you love the trails that you went through but they make a little more sense. I see why Brent needed to change jobs twice this fall and why God made him uncomfortable enough to make 2 job changes in 6 months. Without it we would not be where we are now with a chance at running a test that could help Jillian. This fall has been really rough, but like always, God had a plan all along.
Thank you SO much for all of the prayers today! They were felt. I TRULY appreciate them. I am so grateful for the people who stand around us on this journey and love us. The people who hug us when we cry and dance with us for happy news (it was awesome today watching the texts come in after I told some people about genetics, and how you could just tell that they were celebrating with us and loving us in every season) Thank you to everyone who had to deal with a crabby Amanda this morning and loved me anyhow. I don't have the energy or time to really stress about appointments like this until the 24 hours before the appointment, and even though stressing about it does not help, it still hits hard right before a big appointment and I am grateful for the people who love me though the stress. Thank you!
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| Jillian walking around Children's Hospital of Wisconsin in her Super Tubie shirt and Tutu! |
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