After that first night everything settled down for the most part. There was no more fevers and no more seizures, and we were increasing her feeds and she was tolerating them. We even had a diagnosis: RSV with new onset of seizures. But that cough was still horrible. Sadie would cough and cough and cough, so hard she could not breath. We would have to suction her to get the secretions out of her throat. This pretty much was the only reason we were staying in the hospital, that and the fact that she wouldn't keep her oxygen above 92%. So we wait and wait and wait. Sadie was super sleepy, which was not that unusual because of her mitochondrial disease, but it's even worse when she is not feeling well. To tell you how sleepy she was, in a total of 72 hrs she was awake for approx 12 of those hours. Off and on, and when she was awake she didn't have much energy to move. She would just look around and then fall back to sleep. But the problem was when she slept her oxygen level dropped to mid 80's without oxygen on. So obviously she had to wear the oxygen all the time.
Then in the afternoon on Thursday she woke up and was wide awake, ready to go. As if she had not just slept, and seized, and had a high fevers. She was even practicing her exercises and lifting her head, she all of a sudden had energy.
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| My little unicorn! The nurses couldn't get an IV in a normal spot, so the forehead was our only choice. We then put a guard around it so she wouldn't pull it out. |
Well where did this baby come from? Her oxygen level stabilized, so we ditched the oxygen and took a bath, washed her hair (which was so gross from all the nasty glue from the EEG probes), got a massage, put some fresh clean clothes on, and got out of bed. She was so smiley and happy. I had my baby back and she was going to be OK.
I did not know how stressed I was about this whole admission, until Thursday night. As I put her to bed that night and kissed her good night and felt her heart like I always do, I began to cry. The first time I had cried through this whole admission. Why was I crying now? I guess they were tears of joy, tears of relief, and tears for what the future may hold. Two of her big things that are supposed to give her issues, just happened: respiratory issues and seizures. Sadie has never had these issues until now. Is this the beginning of something? Horrible thoughts started running through my mind. "I can not go there," I tell myself, "I've been positive this whole time I can not let this short, simple admission bring me down now". I began to pray for strength for me and for my beautiful, little girl.
Thursday night into Friday morning Sadie's oxygen level would fall into the high 80's to low 90's when she slept. That meant that she still needed oxygen while she slept. That was consistent through out the night. During rounds in the morning the Dr's came in and we decided to see how she did during the day. If her oxygen stayed above 92% while she was sleeping she would be released. If not we would stay another night and talk about going home with oxygen and having a sleep study done. So after the Dr's left her room, Sadie and I had a heart to heart conversation and I told her to take deep breaths while she slept so we could go home today and without oxygen.
Sadie listened! Bless her heart. She took 2 naps and kept her oxygen level at 93-94%. Perfect!! The Dr walked in around 5p and said we could go home that night. HOORAY!!!!
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