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Sunday, August 12, 2012
I am having issues with my emotions today. A few days ago my grand daughter was admitted into the hospital with respiratory failure. This is doubly horrible for us because this a repeat performance from a couple of months ago and her little body had not healed from that episode.

Tomorrow we are having a family meeting with the doctors and the social worker. This is not going to be a good meeting and we know this. My heart continues to break. She is not even two years old yet.

She has been sick since before she was born. She became sick when my daughter was still pregnant with her. We were told that she would not make it through the pregnancy. When she did we rejoiced.

Then we were told to prepare her funeral because she would not make it through delivery. When she did we were so happy and so scared. Now she was here but how do you care for someone so small and so sick. Especially since my daughter was only 17 years old. She was just a child herself.

When she finally left the NICU, we felt better prepared, but no one is really prepared for a sick child are they. She cried a lot and feeder her was very difficult.

When she was but a few weeks old she had to have a shunt put in. This was to drain the water on her brain. This water was what was causing our little Sabrina so much pain. It helped her and we noticed a difference almost right away.

A month later, she was back in the hospital for a second surgery on her brain. The shunt that had done wonders, had malfunctioned. A new had to be put in.

We thought things were fine for a while but we noticed a routine, she would be home for a couple of months and then have to go back in because she had an infection, or a UTI or her shunt was not functioning properly.

When we left Texas, things began to get better, she was spending less time in the hospital but the doctors were all worried about her. She was not growing, and she was not eating enough. She was 12 pounds and over a year old. She had to have surgery to put in a feeding tube.

This surgery went very well and we expected no problems. What we did not know is that we were not informed. No one told us that she would have issues with excess fluid because she was no longer having to swallow. So the fluid collected in her lungs and she developed severe pnumonia.

That morning is one I will never forget. It was just before the end of the school year and it was time for everyone to get up and go to school. Beth wanted to take a shower and so I held little Sabrina. She was struggling to breath and her little lips were blue.

This child that means the world to me, looked right in my eyes and I felt like she saw me. She is legally blind. She only has the ability to see shadows and light from what we can tell. So her looking at me just before she passed out was really saddening to me. I did not panic, I had my daughter hurry up and get everything ready and my husband to get the carseat in.

My first reaction should have been to call the ambulance but we live just down the road from it and I knew that they would need all her stuff and so everything was thrown in the car and off they went.

She was transferred and intubated. A machine was breathing for her and she was sleeping. She was hospitalized for almost a month. they took it one step at a time, moving her from one machine to another until she was breathing on her own during the day and only using a bpap machine at night.

I found things out then, like she should have been using a suctioning machine, she should have had a medication to help dry up some of the fluids and we should have been monitoring her air flow more. She was already doing breathing treatments at least twice a day.

When she finally came home, we cuddled her and said thank you for letting us bring her home. We cried that she was able to lay in her big girl bed. She even got to start her therapy for her cerebral palsy again.

Then the other day, she had an appointment with her pulminologist who said her lungs were clear and that all the rasping sounds we heard were from a cold she had and that she would be fine.

She came home and slept for most of the day. Still making those sounds. So I went in and held her for a few minutes and she looked exactly the same as she had before. the lips were red instead of blue, she was struggling to breath and could not stay awake.

So we rushed her in again. And now I am back to the where I started at the beginning. I thought this would help. That writing this would somehow be cathartic. It was not. I am still saddened and pained by this. I will be back tomorrow hopefully with the news of our meeting and hopefully this will be better news.

1 comments:

onered911 said...

I'm so sorry you're having to go through all of this again and hopefully Sabrina will get better more quickly than she did before. **hugs**