TrachKids.org

TrachKid Profile

My daughter Laneah was born at 37 weeks gestation. It was a normal pregnancy. I was working full time at a day care center where my six year old attended also. On Oct. 13th we dropped my son off at school and went to the ER upon my doctor’s request. After two hours there is was determined that I was in labor and that my daughter would be born that day. Around three o’clock Laneah was born and immediately taken to the NICU. After waiting forty –five long minutes we still had no word what was wrong with her. Finally a doctor came in and told us she was not breathing on her own. They had to place her on oxygen. We were also told that she had very poor muscle tone and seemed weak. We did not fully understand what this meant. We needed to make a decision about which hospital to transfer her to for more tests. What if boiled down to driving into DC everyday or downtown Baltimore. Still in a daze we prayed and felt good about our decision to send her to Johns Hopkins Hospital in Baltimore. This proved to be a wonderful decision. The next morning we walked into the NICU and became acclimated, with the procedures of the hospital and their plan of care. We began to notice other babies and families. She was in the NICU surrounded by 2 and 3 lb. babies who were fighting for their lives and we began to count OUR blessings.
Test after test and doctor after doctor tried to figure out why she had such low muscle tone. She couldn’t even swallow on her own. Days turned into weeks that were all sort of a blur. My days were spent dropping my son off at school, driving the hour to the hospital and staying with her all day, then leaving in time to go pick up my son from school. We tried to be there during the day for the tests and to talk to the doctors about what the daily plan was going to be. It turned out that their was no known cause for her low muscle tone in her limbs and neck However, major muscles like her heart were unaffected.  At about six weeks she almost died while my husband and I were on our way to the hospital. When the call came they told me to pull over. I was scared. She had aspirated and sucked fluid into her lungs. Since she wasn’t able to swallow she needed her mouth suctioned out regularly. Somehow this wasn’t done and she coded.
Shortly after this a meeting was requested with us and all five doctors present. Before the meeting I asked my husband what he thought the next step was . I wanted to prepare myself for what the doctors might tell us. It was then that we knew the next step would be a tracheotomy and Ventilator. We knew this was Heavenly Father preparing us. This was a hard thing to hear and deal with. I had so many questions and fears. I had seen others with trachs and knew how this might limit her life. The seriousness of her problems also began to hit me. However, because of Heavenly Father preparing me, I was able to go to that meeting relying on him to take care of HIS daughter. Our doctor even asked us, “How are you all this calm about this information?” We told them it was because we believed in God and because of our Faith in HIM. Another experience we had with her was when they were trying to intubate her before the trach was put in. They had to sedate her and put a breathing tube down her throat. They sent us out of the room because the procedure usually upsets parents. I think being away from her while this was being done upset me even more. I sat in the waiting room crying for her. I asked my husband “why doesn’t she just give up? It doesn’t seem worth it for her to go through all this. I felt certain if it was me I would have given up by now. At this moment of sheer frustration, my husband pointed out that she knew it was worth it. She knew more than us and she was fighting.
The surgeries for her trach and feeding tube placement went off just fine. Christmas was spent in a rehab hospital. After three months, she was finally coming home. Little did we know how much we would come to depend on Heavenly Father. In fact it was snowing on the day she came home. The nurse that had been set up to care for her overnight called me and cancelled. I was very worried. We had been trained at the hospital how to care for Laneah but actually doing it was overwhelming. However, Heavenly Father took care of her and by the time we got home we had help.
She hadn’t been home long before we were calling 911. She, from time to time, had problems breathing. She would turn pale and her alarms would go off, signaling that she had a mucus plug in her trach. If we couldn’t get it, or if it took to long she would need to be rushed to the hospital. There we would stay a few days and be sent home until the next time she became sick. We soon learned that when she got sick it meant a trip to the ER instead of the doctor. Now she is three and a half years old and still on a ventilator. We learned that the doctors still don’t know what is wrong with her. They classified her as Muscular Dystrophy/ Muscular Atrophy. However, it is an unknown form . She is still on a ventilator, feeding tube, and must be watched 24/7. She still cannot use most of her muscles, but she has more ability than doctors ever thought possible for her. Laneah’s life is full of the things three year olds enjoy. She loves playing games, listening to stories, coloring, going to school and primary, and singing primary songs. She touches everyone she meets, not because they feel sorry for her but because they can sense her special spirit. She is a very determined and happy child.

• Gender: Female
• Demographic Region: North America
• Siblings: One
• Medical Conditions: Ventilator Dependent, G-Tube, chronic respitory failure, Hypontia, Unknown form of Muscular Dystrophy

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20 weeks 1 day

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United States

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Maryland