Thursday, July 15, 2010

Kjerstin got a new trach today. A smaller one. We put a cap on it & she is breathing normally. To do this, she has to be off oxygen. That is why we have had to wait. This is an important step. This allows her to learn to talk again. She is trying to talk today. Just noises, no words. She looked very intently at Jerimiah today and when he went over to see what it was, she reached over and put her arm on his shoulder and tried to talk to him. Dad got soooo excited!

She is coughing up phlegm still, but it is getting better. We had to change out her bed because she is moving her legs so much that she kept kicking the metal sides. We got her a bed that has plastic sides and we put velcro pads on them. I took her for a wheelchair ride and showed her around the pediatric unit. She liked the reclining wheelchair. After showing her around, she fell asleep in the wheelchair, so I just let her sleep. She even snored. She watched a lot of TV today and is wearing shorts and tshirts, as of today.

Tonight she hadn't absorbed her food from her afternoon feeding, so they are keeping an eye on her and if she hasn't digested/absorbed it by morning we are going to start some meds to help with this. They didn't seem to think this was a big issue.

Tomorrow is the team meeting and they will give us an idea of her goals, length of therapy and so on. They asked today if we would be open to transferring to a skilled nursing facility for mid-level therapy (if needed) after finishing her therapy here at Madonna. The facility would be in Omaha. Of course, we have no idea if this will even be needed.

It is still hard for me to leave her. I just still keep wondering.....why my sister? But Mom says God has a plan. This is really hard. One minute you have it all together and the next you just find yourself crying and not thinking straight. As a family, we are doing great. Mom & Dad are doing good, too. We actually laughed together at dinner. Yes, we all ate together, even Mom.

I have learned a few things from this so far.....

1) We have the best mother anyone could ask for. She has taught us so much and molded us into who we are. She taught us how to love. And even more she taught us how to have a caring forgiving heart. She taught us about helping others and sacrifice. She is the one who insisted that we remain a close family through the years. She annoyed us by making us go to each others games and functions, but boy we are glad we went now!

2) Being the oldest isn't always bad. I realized today that I have so many more and different memories from the other siblings. Things I can tell them about.

3) Jerimiah has Mom's heart! Even though he is a guy, he is very caring and has a tremendous ability to love. I knew he did, I'm just seeing that love demonstrated.

The staff here at Madonna is phenomenal! Mom feels very comfortable with them caring for Kjerstin. They listen to your concerns and make notes and take care of everything! The are always patient and they all think mom is so funny.

You know, they say that KJ has the personality to get through this, but she also has to have the support to do this. Mom is a huge part of that support. Mom is giving up her life and will continue to until Kjerstin is well. Mom will never give up. She will sacrifice it all. She won't let Kjerstin give up either. And that is part of what is going to help Kjerstin get better. Mom's undieing devotion. Kjerstin will soon understand the blessing of a loving mother.

Thank you for all of your prayers and support. It is hard to believe it has been almost 3 weeks. It seems like it was just yesterday when KJ was sitting on my couch. It's hard to believe this has happened and actually sometimes, I don't want to believe it! But as a friend told me, (Dr. Alberto Carro) I can't let the devil creep in. When things seem impossible, I remember those words. It's amazing how something so seemingly small, can have such a tremendous effect.

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