Do you ever ask yourself why things happen the way they do? Why did God pick you to have the life you have? Is you destiny chosen for you or do you make it? Are we able to change our destiny? No one can answer these questions. I am so tired lately. Worn out and can not sleep at night My back hurts so badly these day and worrying about things keeps me awake till late. Then, something happen unexpectly to help but.... I still can not sleep. What is up with that? My Gosh. Sleep its required to survive isnt it? I dont think I have slept over 5 hours a night in years. Sleep what is that. A nap ? I have not napped since I was an infant.
The last few months so many babies/kids with SMA have earned their wings. Type 1s and 2s. You just want to know why? Why so many kids? Did they not know how to help these kids or was it just their time. Why so many? Twelve I was told by another Mom. TWELVE.....**Sigh** Twelve children with this awful disease. Twelve families dealing with the loss of their loved ones. Why are so many of these doctors still so ignorant on caring for these kids correctly? I know from our experiences how arrogant and ignorant some of the professionals are that are in the PICUs in our state. Why do they not want to learn? Is there a way to make it a law that doctors take a course in Spinal Muscular Atrophy? Some body please tell me how to do this.
In our area we have two good hospitals but we can NOT take Lizzy there because they still "do not get it". We have had her intubated here once and flown to another hospital in the area. Then, because the doctor would not do what was neccesary to help Elizabeth we had to life-flight her to Madison with DR.Schroth. Madison come and got her. The doctor here said Elizabeth was just progressing . She was NOT !! She was sick and just needed a little help.
Here is our first experience with a hospital in Chicago when we came close to losing Elizbeth because of ignorance accompanied with arrogance. From Lizzy's archives on her SMA web-site.
"When we landed they had an ambulance there waiting. They still refused to let us do a treatment. When we got to Christ Hospital ER we told them what Elizabeth had what her treatments were and please..... call Dr.Schroth. The ER Doctor refused saying she was not on staff. Well, after us sticking to our guns threatening lawsuit several times and Christen almost attacking the ER doctor they finally listened to us and called up to Madison. The respiratory therapist let me do Elizabeth's Cough asst,chest pt , suction and put Elizabeth on bipap. Elizabeth was stable and they said they wanted her to keep her in for observation. Her heart rate was 145-150 and her ox level was 98-100. We were in ER 7 hours. So, she was taken upstairs and she had good color. I gave her a cough and another respiratory therapist was watching and then I was started to do chest pt then suctioning her out and the respiratory therapist changed Elizabeth Bipap mask to one that covered her whole mouth ( I was freaking asking why?)and Elizabeth started coughing on secretions and the respiratory therapist stuck a nose suction catherator down her throat and the sections were so bad she choked and went into Respiratory Arrest. I kept calling her saying "Elizabeth its not your time please come back to your Nina and you have lots to do yet" She had her lung collapse during that time. The doctors and nurses tried to get me out of her room and I said if you think you can move me go head and try!!" I do not know how many times I called her then she looked right at me through the bars at the end of her crib and her ox levels starting going up. She never did totally lose her heart rate totally. I was praying so hard then the color started coming back to her little face but her lips were so white. I think I was about to have heart failure."
If they would of let ME give her a full treatment on the plane this NEVER would of happened or when we landed. That is just one of the two times Elizabeth was taking to the hospital because for respiratory issues . Both times she ended up in Madison,WI after terrible ordeals with the hospitals here.
We have our own power supply now Pure sine wave inverter and marine battery and we had approval on every flight since then to use it if we had to.
Elizabeth wears bipap when flying because of the recycled dry air on a plane. Just a few things we learned. We learned to fly with bipap from DR.Schroth and the battery back up from other parents. You would think with the Family Care Guides DR. Wang and DR.Schroth help write that things would change for the better.
I hate SMA but I have learned to live with it.
Enough said.
"We believe in miracles because we live with one"
http://www.our-sma-angels.com/
2 comments:
I hear you. And this is the third time/blog that I'm going to vent: Very frustrating and disappointing that family and friends of my husband's on Facebook would not take the time to vote for SMA! Only 2 out of 100+ friends/family voted despite pleas from us (actually, from me.) My husband said I was setting my self up for disappointment. I guess I just have high expectations of people. I'd like to think that if the circumstances were different, that I would do everything I could if the life of a friend's child depended on it. That's all I have to say. Have a very nice weekend!
I voted Maria :)
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