Madison Maylynn mom
Princess in Training!
- Joined
- Mar 20, 2015
A little background on my little wish child. She is 3 years old. Madison was born with Down Syndrome. When we was born she had a hard time breathing so within an hour she was airlifted to Mayo Clinic in Rochester. She spent 4 weeks in the NICU. They got her breathing issue under control but because she had that issue, she was having a hard time eating so she ended up have a g-tube placed. After that, she was in and out of the hospital with recurrent pneumonia, sleep apnea, and reflux that resulted in her getting a Nissan done (this is where they take part of your stomach and tie it around the bottom of your esophagus. This had to be done twice since the first one ended up producing a hernia above the tie off.) She was able to get the g-tube removed at about 6 months of age. By this time she had had about 20-30 surgeries and been put under anesthesia to have different procedures done.
By Saturday, January 4, 2014 we thought we were in the clear because she had gone 6 months without having to be hospitalized or being sick. But that was not the case. We were having Christmas for my dad's family, and Madison just wasn't feeling like herself, so I decided to take her home. When Madison and I got home, I checked her forehead and she was burning up so I rushed her to the emergency room. When we got there, they diagnosed her with pneumonia and we were told to check in with her doctor on Monday. So I made an appointment with our family doctor on Monday morning. I took her in and while the doctor was checking her out, they decided to do a nebulizer treatment on her. While during this treatment, she passed out so our doctor decided that we were to go to the emergency room and that we would be transferred to Rochester because something wasn't right.
We arrived in Rochester at about 8:30pm. We got settled in and the doctors came in to check on Madison. I had finally got her down to sleep and I was getting ready for bed when the doctor came in (about 10:00pm) He informed me that her blood test came back irregular and that on the physical exam, her liver seems enlarge which meant either she had an infection or she could possibly have leukemia. I cried myself to sleep that night. The next morning, I called my husband and told him the possibilities. By 10:00 that morning, we got the confirmation that Madison indeed had ALL leukemia. We started treatment right away and spent the next month in the hospital. Since then we have been in and out of the hospital with infections, being sick and just getting treatment.
Then in March, we found out we were pregnant and had a little girl, Maylynn, in December 2014!
Just recently, Madison spent a week and a half in the hospital in February because she came down with PCP pneumonia. This is a bad pneumonia that you get when your immune system is suppressed. Madison has and still is taking medication that is suppose to help prevent this pneumonia but that didn't happen. So she did the 21 day treatment and then a month to the date after she was diagnosed with PCP, she came down with regular pneumonia but was not hospitalized for this one!
By Saturday, January 4, 2014 we thought we were in the clear because she had gone 6 months without having to be hospitalized or being sick. But that was not the case. We were having Christmas for my dad's family, and Madison just wasn't feeling like herself, so I decided to take her home. When Madison and I got home, I checked her forehead and she was burning up so I rushed her to the emergency room. When we got there, they diagnosed her with pneumonia and we were told to check in with her doctor on Monday. So I made an appointment with our family doctor on Monday morning. I took her in and while the doctor was checking her out, they decided to do a nebulizer treatment on her. While during this treatment, she passed out so our doctor decided that we were to go to the emergency room and that we would be transferred to Rochester because something wasn't right.
We arrived in Rochester at about 8:30pm. We got settled in and the doctors came in to check on Madison. I had finally got her down to sleep and I was getting ready for bed when the doctor came in (about 10:00pm) He informed me that her blood test came back irregular and that on the physical exam, her liver seems enlarge which meant either she had an infection or she could possibly have leukemia. I cried myself to sleep that night. The next morning, I called my husband and told him the possibilities. By 10:00 that morning, we got the confirmation that Madison indeed had ALL leukemia. We started treatment right away and spent the next month in the hospital. Since then we have been in and out of the hospital with infections, being sick and just getting treatment.
Then in March, we found out we were pregnant and had a little girl, Maylynn, in December 2014!
Just recently, Madison spent a week and a half in the hospital in February because she came down with PCP pneumonia. This is a bad pneumonia that you get when your immune system is suppressed. Madison has and still is taking medication that is suppose to help prevent this pneumonia but that didn't happen. So she did the 21 day treatment and then a month to the date after she was diagnosed with PCP, she came down with regular pneumonia but was not hospitalized for this one!
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