We were finally able to take Caelyn home and she was doing great! We were adjusting well to the tube feedings and they seemed to be going good. After just two short weeks at home, Caelyn starting having increased work of breathing and she seemed like she was having a really hard time. I took her into her peditrician who hooked her up to a pulse oximeter machine and found out her oxygen saturation was only 88%. He recommended that we give her albuterol nebulizer treatments every 4 hours and come back in two days to see if things were improving. Well, I didn't think they were and when we went back it was confirmed that they weren't. Her oxygen saturation was still pretty low and she was having a really difficult time in breathing. Her peditrician recommended that we check back into Rainbow Babies.
They admitted her and right away her oxygen kept dipping into the low 80s. They put her on oxygen and I was so confused. I didnt understand what was going on. She was just fine 2 weeks ago. Why was this happening? We were on the 6th floor for about 3 days with Caelyn on oxygen trying to figure out what was going on.
At the end of the third day, some doctors from pulmonary came to talk with me. They said they felt it would be better if Caelyn went downstairs because they would be able to watch her closer down there and give her more one-on-one attention. I didn't know at the time, but by downstairs they meant the PICU. Man, that was scary having my baby in the PICU and no knowing what was going on or if she would be okay. We were in the PICU for two months. In the course of these two months, Caelyn went apneatic on multiple occasions and would constantly desaturate; sometimes all the way down to 13%. They finally came to me and said that they thought the best decision for Caelyn would be a tracheostomy and a gastric tube. I was shocked. I couldn't understand. Caelyn was just fine two weeks ago, and now they have no idea what is wrong with her, but they want to do life changing surgery?? We thought, prayed and debated for a long time but they were trying to rush us because they said that Caelyn really needed this to be okay. So we finally decided to go ahead with it and on September 30, 2010 Caelyn had her surgery. Our life was changed forever. Caelyn now requires 24/7 care and she cannot go anywhere with me, my husband, or her nurse.
I was so relieved to see her after surgery, but all I could do was cry. She looked so pitiful! I was also feeling sad about how her life was going to be from this point on. Then we had some lighter moments. Cory and I just had to chuckle at Caelyn because they had her on morphine. When she woke up her eyes would be spacy and she was would have this look on her face like she didn't have a care in the world. It was pretty comical. She recovered very well and she was off of the ventilator later that night. She did amazingly well with her recovery and her development seemed to improve by leaps and bounds. She hit a small bump in the road however when she got a sore around g-tube site which turned into MRSA. It was really painful for her, and we had hold off on her PT for a little while.
After a long 2 month wait we were finally able to out of the PICU and Caelyn headed upstairs to the 5th floor. We had to stay here for another couple of weeks while Cory and I both went through extensive training in how to care for Caelyn and all of her needs. While we were here Caelyn met some incredible therapists that helped her tremendously. Then the day finally came when we were able to go home. We were so happy, excited, anxious, and nervous all at the same time! This is when they set Caelyn up with home nursing. This has helped us so much! They watch Caelyn overnight so that we are able to sleep. I know it doesn't seem like much to them, but it makes a world of difference to me not to have to wake up with Caelyn 10 times a night and then take care of her all day long.
Over the next couple of months, Caelyn would be in and out of the hospital 3 times dues tracheaitis and bronchitis/pneumonia. She spent her first Halloween in Rainbow.
Caelyn is doing great now and is making great progress in therapy!