SMA SUCKS! By Jasmine Wormer
Its takes away your childs ability to move. I was never going to see my daughter twirl around saying, "Look at me mommy!" I knew I was never going to go prom shopping with her too. I wanted so badly to dress her up in little pooffy dresses, or cute little onesie outfits, but couldn't because it was so difficult to get the clothes over her head, or have a onesie outfit on her because it would be pulling ad bending her GTube in every which way.
Delylah has spent a total of 3 and a half months in the hospital since she was diagnosed on October 23rd. Her first 2 visits were very minor. That was when she was DX, and then when she got her GTube placed. Her third and 4th visit were more angry. Her first visit to the PICU, she had pneumonia, and we ended up staying through out christmas. Were were in the hospital for over a month, and we had to go home on bipap. She was on BiPap anywhere from 18-20 hours through out the whole day. It took us almost 3 months to get her off of continuous bipap, and get her down to where she only used it when she slept.
Then again on March 7th she was rushed to the hospital with Strep Pneumonia. She was intubated for a month at this point. We spent the first few weeks fighting with the doctors because they still are so new to SMA. They tried to extubate her before she was ready, and she failed. Needless to say thy did not follow the proper protocol to her care. The next time went much smoother. They listened to me and she was extubated beautifully. We still had to spend another few weeks in the hospital so that we could get her to a safe place to take her home. Of course just like last time, she declined a little but we got her back up, just in time for her birthday party. Her birthday party was a huge success. it was almost as if she didnt have her breathing problems!
Fast forward to Wed, Jun 5th, She woke up at 1130 ish, and I did her breathing treatments like I always do, and I brought her into the living room with me. We were singing and dancing and having a good time. I set her down next to me, and I made a phone call to order more tubing for her BiPap. When I got off the phone, I turned and looked at her, and she was blue. I then ran to get the pulse ox, suction, and stethoscope. I couldn't feel a pulse and the pulse OX wasn't picking one up.I started to suction her out, and used the stethoscope to listen. I could hear a faint heartbeat, but no breath sounds. at that point I had a friend calling 911, and I started to bag her. I still was getting no air movement, and that was when I started CPR. I did CPR for, I have no clue how long, it just seemed like forever. All I could do was call out the numbers through the tears to keep me focused. Running through my check list out loud was all I could do to keep going as best I could. As I was calling out, I heard my friend say, "They are lost, and can't find your house." --- Let me side track for a second here, The city of Vancouver has been doing some construction along my street. Now, I live on a dead end road, where as before, there was access to my house from 2 different streets. When Delylah was diagnosed, I had sent out nasty emails about how unbelievably pissed I was because they had completely blocked me into my house. I was assured by multiple people that it wouldn't happen again, and that they were going to have weekly meetings about how to properly treat the situation if it was to occur, --and this would have been one of them. Part of the problem for why they couldn't find my house is that, the streets aren't clearly marked. There is equipment, and dirt, and trucks blocking everything, so my friend, who was on the phone, had to go down, and flag them down. The Paramedics tried roughly 15-20 minutes to stabilize her, as well as made attempts to intubate her, being unsuccessful they had to rush us to the nearest hospital. It took another 20 minutes after our arrival before she was finally intubated. While this is going on, I had to have someone call my husband so that he can leave work early, and this happens every time. Whenever she is in the hospital, whether it is due to an illness, or what have you, we end up living in the hospital. My husband ends up taking days off work, and this time is no different. This week he's taken off Wed, Thurs, and Friday, as its it's too hard, and too stressful, for him to try and work while being worried about Delylah. In this case it's not pneumonia, or a lung collapse we are worried about, but brain damage. We still do not know the extent of how bad she is. She is still currently unresponsive, and has had seizures. Her eyes are open, but it is just a blank stare. I really wish I had my daughter back. She may have been unable to move but she still had the biggest heart, and personality. Her smile could light up the room, and you could see it just walking in. Now it's all gone. We are just waiting. Waiting for more information, and to be honest what we are getting isn't unicorns and rainbows. I may never get my Dely back.
DonationsSee top donations
- Dustin Ritsema
- Major Coleman
- Cheryl Diane Brown
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
Contact us with your questions and we’ll answer, day or night. Learn more