December 30 - January 6 for a UTI
Home a week.
January 13 - January 19 - inconsolable crying, not sleeping, not playing at all and wouldn't allow you to put her down for more than 5 minutes before a meltdown ensued. Determined she was having bad reflux and it was causing her pain.
Home 3 days.
January 22 - January 26 for fever which was determined to be viral, very aggitated and not sleeping.
We are now home for three days and things are better. Maci is playing more and more each day and enjoying herself. There have been a few times where she cries out like something hurts but they are much shorter lasting. I think my baby is finally returning to being herself.
She will be having an upper GI done to take a look at things and see if anything has changed from her last one done while she was still in the NICU.
Today, 1/29, Rick and I attended the Transplant Education class. This is the FIRST of many steps in the transplant process. We also met with a couple of other people that we are required to speak with. The education class was FULL of information. The next step is to find out if insurance will require any additional testing for Maci and if so.....get it done. I am going to give them a call tomorrow to find out a little more detail. It was AMAZING to begin this process! Maci was the only baby/child in the class today. Y'all, there are SO MANY PEOPLE waiting on a kidney! There are so many waiting on other organs. It is heartbreaking to know that you life depends on someone else's death in some cases depending on the organ you need. REGISTER TO BE AN ORGAN DONOR, please!
Maci went with us to the transplant class and was SUCH a good girl. She slept a little and relaxed, kicking her feet up.
Maci currently has Medicare because she is in renal (kidney) failure. She will qualify for Medicare for 36 months (3 years) after her transplant. After 3 years, she will no longer qualify for Medicare coverage.
Medicare covers 80% of the transplant medications and the patient/family picks up the remaining 20% unless there is a secondary insurance that will cover the remaining 20%.
Monthly transplant / anti rejection meds per month $1970.05!
Yes, you read that correctly, nearly TWO THOUSAND DOLLARS PER MONTH, PER MONTH! The 20% alone, per month, $394.01.
There is currently a bill sitting in congress that would extend Medicare coverage. It was introduced in 2011.....and it still sits. I typed my letter to my Senators and House of Representatives today, pleading for them to do something about this....pass this bill!! I will post a seperate blog with my letter. Please feel free to copy/paste for your own and send your own signed copy.
It should NOT be this difficult of a fight for my kid! It has been a battle since day one! I shouldn't have to worry about the insurance coverage I may or may NOT have in 3 years and how I will possibly pay for the medications that keep my daughter from rejecting her kidney. ONE missed day of these meds can potentially put someone into rejection. (They told us that in class today.) ONE day without meds and Maci could be looking at life on dialysis again. The irony, should she have to go back on dialysis, Medicare will begin covering her again and will pay for everything involving dialysis. **blank look**
Life on dialysis for her.....she can't talk to tell us what it is like but as a parent it is horrible. The LAST thing I want for her is dialysis again because of insurance crap. So, us getting Maci a kidney doesn't end our worries. It doesn't end a life of stress. It only ends dialysis. We trade one beast for another but at least the new beast will make life better and easier for Maci.
Tuesday, February 5th is National Pancake Day. IHOP restaurants are raising money for Children's Miracle Network Hospitals and the benefiting hospital of the Mid South is Le Bonheur Children's Hospital. You can now begin purchasing a "Miracle Balloon" for $1 or a larger one for $5 at any Mid South IHOP through February 5th.
The Maci Moo Kidney Krew will DEFINITELY represent on Tuesday, February 5th at the Southaven IHOP on Goodman Road at 5pm. I encourage you to join us. You can get a free short stack of buttermilk pancakes or if you'd like to pay for something different from the menu.....well you can do that too. If you just want to stop in, say hello, purchase one or two or three or four...or more $1 Miracle Balloons to benefit LeBonheur that would be awesome too. Rick and I went last year for National Pancake Day, leaving the hospital and our little girl early to attend. I was overwhelmingly blessed by those who came to have dinner with us. One big blessing and change for this year, Maci will be with us! It is never to early to begin trying to teach her to PAY IT FORWARD!
No comments:
Post a Comment