I was so focused on getting through surgery that I don't think I really ever gave much thought to life in recovery. It is much worse that I could have ever expected. I am confident that as a family we can get through anything-including this difficult time. However, that does not make these times easy.
Kalyn came through surgery well. She had some really bad lung issues from disuse prior to surgery. Her right lung was plugged with mucus and she was not even using it prior to surgery. Her room air oxygen levels prior to surgery were 84-85%. With oxygen she came up to 91-92. Thankfully they were able to suction her out really well and inflate the lung during the 7 hours of surgery. This helped to expand those airways that had collapsed from her lack of deep breathing and being blocked by that mucus plug. She was oxygenating well throughout surgery. Everything was a success on her spine. Dr. Birknes was very pleased. As we were very pleased with him. I jokingly told him that he is on the Christmas card list this year. I am really ready to frame a picture of him and put it up in the family room. I feel like he took care of us as a family and I am more appreciative than I could ever express to him.
The post-op period however is very hard to deal with. I have had a very hard first day after surgery. Kalyn once again was not breathing very well and didn't seem to have the strength to cough. Thankfully, Jeff left work early and came to be with us. I had reached my breaking point. Her levels were down again and she was not coughing with very much force. She complained that her vest was hurting her tummy and we figured out that it was too tight for her to breathe in deeply. The vest was placed while she was lying down. Kalyn has very poor upper body tone-related to her Down Syndrome. It fit perfectly while lying. But when she sat up she did not have the strength to stay straight and it was constricting her as she slouched some. She did not sleep more than 2 hours last night and was also very tired today. Thanks to the great nurse today and the PICU MD and respiratory therapist who suctioned her out this morning and started a regimen of deep breathing and coughing. It appears to have worked. That along with the slight loosening of her vest by Dr. Birknes. She is now off of the oxygen and is keeping her levels around 93-94.
I am at home tonight writing this. I broke down today and had to leave to take a nap at my uncle's house while Kalyn rested. I have been having problems with anxiety when I leave her. My heart beats fast, I feel faint, and I feel like I can't get enough air. But, I am also exhausted. I haven't been sleeping well as I wake up with her every noise and my dreams are not pleasant when I do manage to nod off for a little while. Jeff has stayed with Kalyn tonight and I have come home for a short break. I took a hot bath and soaked in the tub while the jets relaxed my muscles. And now I am lying in my bed with Alexis. I will get her on the bus in the morning and then head back over to Norfolk. I miss my baby. But I am no good to her when I am so beaten down and weak.
Tomorrow we will start full force with rehabing our girl. She is very weak from disuse. She can barely lift her arm to her nose. So we will just have to do it for her and make her help more and more until she regains that strength. I just had no clue that she would be this weak. We let her rest and did some passive exercises today. Tomorrow the TV will be turned off and she will be more active. Mom is coming to help. Its time to get better.
Even with this strong resolve, I am frightened. I am frightened that I cannot provide the care that my daughter needs. She and I have always been a team. I push her and she pushes back. I don't know what to do when she doesn't fight with me. I have to find a way to get through to her. And also a way to maintain my mental resolve when I run into these stumbling blocks and obstacles to recovery. This will not be easy. I knew that. I just didn't realize that it would be so difficult. But I can do difficult-I have never had a problem with that.
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