After we were discharged from the hospital, we were brought an oxygen concentrator by home health. Luckily, the oxygen concentrator has 50 foot long tubing, so that Elsie wasn't confined to a 2 foot radius while hooked up to the oxygen. She was able to go almost everywhere in our house. It was still fairly annoying, because the tube connectors would get caught on things, and she'd get stuck. And we all tripped over the tubes once or twice. But whatever we have to do to help her breathe, we do, so we dealt with it.
We had a follow up appointment with our pediatrician on Thursday, and he checked her oxygen sats to see how she was doing. She was still showing up in the mid 80s, even with her oxygen on, so I'm pretty sure that the reading was off. He wrote us an order for a pulse oximeter, so that we could monitor her sats at home and try to wean her off the oxygen. When the pulse ox arrived, her sats were in the low 90s, and have been getting better every day. By Friday, she went the whole afternoon without 02. We put it back on when she went to sleep that night, because it's typical to de-sat while you're sleeping. And she has been fine without any supplemental oxygen since then. I'm so relieved that she was able to get off the oxygen so quickly, even though it didn't seem very quick to me at the time.
Here's a few more tidbits about our hospital stay that I want to write down before I forget. The nurses all thought Elsie was completely adorable, because I would ask her if she wanted a drink or some food, and her response would either be "Yes please," or "No thank you" in her cute little voice. Even when she wasn't feeling well, she was still polite. Also, there were several times when I would ask her what she needed, and she would say "I need you, mommy". I slept next to her in the hospital bed each night, and she would frequently reach out to touch my arm to make sure I was there. Isn't that the best feeling in the world, to be just what your child wants?
We had several fantastic nurses and techs who took great care of us. One of the nurses was a girl I knew from high school! Ashley Hatch is her name. I'm so thankful to live close to a great facility like Primary Children's, where I know that Elsie will receive the best possible care. The hospital food wasn't so bad, and the facilities in the Ronald McDonald family room, where I took a shower, were awesome. Wish I would have known about that place sooner. In conclusion, they took great care of us, but we're ever so happy to be home.
I would like to make note that throughout her illness and hospital stay, Elsie was able to eat and drink enough by mouth to stay hydrated, and did not need any additional fluids given to her through her gtube or through an I.V. I'm so extremely proud of the progress she has made, and I knew that she would be ok with her oral intake, even if she got sick. Now if we can get her to chunk up a bit more, then we can get her gtube permanently removed. I can't wait for that day!