Hope for Maggie Agnew: 2/24/2011

Friday, February 25, 2011

2/24/2011

I'm Michelle's sister, Mindy, she asked me to update her blog for her since the family is so overwhelmed with everything. I'm going to do the best I can to update with what is going on. It won't be as thorough of an update as Michelle because I don't know all the medical terms.

Last night, Maggie had her "Star Raising" a Make-A-Wish Foundation. It was awesome and so many people that love and care for Maggie and her family were there supporting them. We all appreciate all the support their neighbors have been giving them. Michelle and Sean seriously have the best neighbors anyone could ever hope for especially in times like these. They are always the first to jump up and help. Thank you so much!! I know how much it means to Michelle, Sean and their family.

A little synopsis of what's happening, is that Maggie has poisonous gases in her body caused by bacteria. This is what she is living off of and she's in a lot of pain because of it. She is not able to eat anything as it would feed to her bacteria and increase the gases in her body. Sean and Michelle are doing their best trying to get out all the gas, but it's still not enough, her tummy just gets gets bigger from the gases building up. The only way to help with this is the medication that I believe Michelle has talked about previously, this medication will help with relieving the gases. She has started on this already and it hasn't really affected her like it should, her organs just can't handle it so basically her organs aren't exactly functioning. With this in mind, Michelle and Sean thought it best that they bring her to the hospital. Today, they will bringing Maggie up to the hospital where they will actually stop the medication since her body just can't handle it, then they will make her comfortable by putting her on morphine. This is an extremely hard time for their family. Things are really not looking good for sweet little Mags. She has touched so many lives of those that she has and hasn't met, I just hope that she can be an inspiration to us all, she's been an amazing strong little girl. She is and always will be our little Angel.

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About Maggie!

Maggie was born on 6/18/08 she was a healthy 7 lbs 7 oz 20 inches long. For the two days that we spent in the hospital I could tell something was not right with her. She was so noisey when she would eat and she would have such a hard time staying on. I kept telling people how weird I thought this was and I was a little concerned about it. Finally on the last day we were there and we were all ready to leave I told the nurse that I thought something was wrong with her and explained what I was seeing and hearing. She decided to take Maggie to the nursery to put her on the monitor and feed her. While she was feeding her Maggies oxygen levels droped into the fifties and she turned blue. Right then she decided that Maggie could not be sent home. So Maggie was sent to the NICU. She also had a heart murmur so when she got to the NICU they put her on monitors and also had an echo done on her heart. They only found one hole so they told us that when she was out of the hospital to make an appt with a cardiologist. The first night she was hooked up in the NICU Maggies oxygen levels dropped out while she was sleeping so they had to put oxygen on her. She was on oxygen for a few days and then they finally took it off. After 48 hours of being off of the oxygen she was sent home with oxygen and a monitor. After being home for about two days she continued to drop in her oxygen and turn blue often so we took her to her pediatrician who immediately sent us to primary childrens hospital. While up at primarys she was diagnosed with laryngomalacia. Which is the cartidge in her throat was very big and floppy (soft). She also had an upper GI done which there they found that she has really bad reflux so they put her on some medicine for that. They also did another echo of her heart and found that she actually has three holes in her heart. So they told us some things we could do for her throat and sent us home. So after being home for a while and having a lot of blue spells while she was eating we took her back to primarys per our doctors request. So that is where she was for about six days and they did her surgery where they doubled her throat size. Poor little girl. During that hospital stay she also turned blue while the nurses fed her. And that is her story and it keeps going on.