Parker was born on June 30, 2010 at 39 weeks (c-section because her head was too small). We knew she had Microcephaly a couple of weeks before she was born. She was also diagnosed with Lissencephaly (smooth brain) a few hours after her birth. My world was turned upside down. They gave us no hope, no future, and our world was crushed. They said she may have multiple seizures, debilitating gross developmental delay, and most likely would not live long.
We were told all of these horrific things, but we were determined to prove them all wrong. At Parker's 2 week checkup I asked for a swallow study because she struggled so hard while feeding. We were admitted into the hospital as soon as we were done because it was "unsafe" for her to continue eating without a tube. An Nasal Gastric tube was placed, and I was trained on how to use it. We were then sent home to continue care there. A few days later Parker had her first seizure. Not just a small one either. A grandmal!!! She had her first EEG two days after that and they started her on seizure meds.
A month went by and her feeding did not improve, and she failed several more swallow studies. In August, they scheduled her for g-tube surgery. A month after that we were back for another surgery because with the new g-tube she was having reflux. They did a nissen fundo. Prior to this surgery she would spit up or throw up after every feed and it would drain into her lungs. In November 2010 we were admitted to Baylor's for 5 1/2 weeks to try and improve Parker's swallowing skills. She did improve!
It was during this time I decided to make a career change into the health care field. I knew it was my calling and I started school shortly there after to be come a patient care technician. Things began to look up, and we went almost a whole year without an actual admission to the hospital. We had plenty of scares and Dr. visits (at least one a week) and ER trips, but not actual hospitalizations.
Then in November of 2011 we ended up in the hospital for a week. She one day stopped tolerating her feeds. She would scream bloody murder until you stopped anything from going into her belly. They ran a bunch of tests and could never find anything. But, they thought putting her under and placing a GJ tube would help. This means her food could be administered directly into her small intestine, bypassing her stomach itself. It worked for about two months and then in January we were admitted again for the same thing. Again more tests and no answers. She went back to a g-tube and we switched formula. She's now on a very specialized diet and any little modification can upset the balance again. Also in November of 2011, we noticed her swallowing had gotten worse than ever before.
Her lungs were collapsing sometimes and we made appointments for ENT and pulmonary, but it would take months to get in. By the time we did get in , things had gotten much much worse. She was choking violently on her secretions almost daily. we tried medicine to decrease them. Even tried Botox injections into her saliva glands and her wearing oxygen at night. None of these things helped. I begged doctors from all over to help her. On April 2011 she was choking and would stop breathing at least once a day because she could not control her secretions.
In May we saw a new ENT doctor who scoped her and found her airway to be filled with saliva at all times. She was just gurgling past them. For safety and comfort levels Parker had a trach placed on July 5, 2012. She did great. We were there for two weeks. We were home for almost two weeks then on a Monday our life was turned upside down again!
Parker had been known to have seizures since early on, but they were always pretty controlled, maybe 5-10 a week. This Monday in particular she had seizures like we had never seen before. She had 26 of them. The following day she had 64. We called the neurologist and they upped one of her four seizure meds. The seizures continued. She was either sleeping or seizing. My mommy heart broke.
We were admitted that Thursday to try to figure out what was wrong. They found nothing!
NO INFECTIONS
NO EXPLANATIONS
They drastically changed her seizure meds and doses and we were sent home that following Sunday evening. Things continued to decline. She started having apnea spells (where she would stop breathing for periods of time) while awake for up to 20 minutes at a time. Green bile began leaking from her bum, and she started not tolerating her feeds very well. Based on everything multiple doctors suggested we had to choose for her to be placed on Hospice. We were being told her brain was just too small to control her body anymore. I though long and hard and decided that would be best.
She has been on hospice for 2 1/2 weeks now and she has progressively gotten worse. Her breathing is very erratic and irregular. We were told to choose between hospitalizing her to be placed on a vent that will sooner or later breath completely for her, or keep her at home and comfy knowing she will continue to decline. We chose to keep her in her loving, comfy home with us.
Ive only been in my job for 9 months. I work on a bone marrow transplant unit at a local hospital, and I love my job. But, because I have not been there a full year yet, I am not allowed to use my FLMA during this time when my daughter needs me the most. Between the cost of Parker and the other two teenagers in my family, life can be very expensive requiring me to keep my job!
Love,
Megan
Now this is where we come in:
I know none of us can afford to pay for Megan to stay home. But together we can share Parker's story and make donations to her chip in to the right to allow Megan to take some time off to spend with her daughter.
I can only imagine, counting the minutes waiting to get off work to go be with my terminally ill daughter. Parker needs her mommy!
Please share Parker's story, and help Parker have her mommy at home with her!
Love,
Jamie C.
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