I feel like so often I focus on the difficult parts of our life rather than the wonderful, but I also realize that a lot of what I post about is the reality. Sometimes I think that people underestimate how difficult this life can be. I would NOT trade my daughter, nor the time we have had with her for anything in the world. Everything has its price. Post Traumatic Stress Disorder in parents of medically fragile children is very real. I deal with it daily. That combined with the PTSD I am already experiencing as a result of my own health issues being ignored by many health professionals is just a lot.
Nora spent most of February in and out of the hospital. We had an especially scary episode on Lydia's second birthday. I am not exaggerating in the least when I say we nearly lost our youngest girl. I woke up to her vent going off and found her blue, not breathing. I started to bag her and try to get her back. Our home care nurse, Cary came in just in time, and we worked together to keep her alive. I called the ambulance. We did an emergency trach change. It did nothing to change Nora's status. I ran upstairs to et Lydia, who after all of the commotion woke up for the day. I quick grabbed her some Cheerio's (the kid loves to eat) and ran back in to assist Cary. Mayzee, our usually overenergetic and enthusiastic dog, stayed out of the way of the crew. We grabbed the Emergency Bag, her travel vent and hopped into the back of the rig. The lights and sirens turned on and we sped down the road.
It only took minutes to get to the hospital. But suddenly it became apparent that Nora was fading. She became unresponsive, still was not breathing and her oxygen and pulse were so low I could not tell the difference between the two. I screamed at Nora to please not die. The ambulance crew looked at each other. They had no idea what to do. They wondered if the police could help. We were pulled over. I realized that if we didn't move we were going to lose her before we could figure out what to do. We kept bagging her, and I told them to drive fast.
We were brought to the trauma room. "Oh shit," I thought. You don't go to the trauma room unless things are really bad. We bagged her for at least another 30 minutes. There was never a question as to whether or not we were headed to Sioux Falls, just how long it would take for us to get there. Since all of this happened earlier in the morning, we were able to get to Sioux Falls before supper time. We were able to check into the Ronald McDonald house and we took Lydia with us. It was her birthday, after all and it's not fair to have her spend it away from her family. Having a two year old, especially one as busy as Lydia, in a busy hospital isn't ideal. But we made it work, and I don't regret it.
We've finally (I think) hit a sweet spot where we can take a little bit of a breath. I'm not under the mistaken impression that we will never go to the hospital again. That's far from realistic. But, it certainly would be nice to be out for a while. We hit a good streak where we kept her home for a long time. It would be nice to have another.
Meanwhile, we are still having a difficult time navigating life. Having the waiver in place so that I can get paid to care for Nora is an amazing blessing. I have also been picking up some shifts at the nursing home to help a little financially. There is no shortage of things to do. Cleaning takes effort, and time away from our two children who are two or younger. Nora has a lot of needs medically, and Lydia needs a lot of stimulation to keep her learning. We've discovered that Lydia is a very smart girl who learns very quickly and we have been having a difficult time challenging her. In addition, having our in-home nurse, Cary, has been an incredible blessing and we are so grateful to have some help. It allows us to make appointments, make work meetings, and get out of the house once in a while. Now that the weather is nicer and cold and flu season should soon be coming to an end, we should be able to get out for some outings as a family. Spring and Summer are great for that.
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