2 weeks notice

Since we were discharged from the hospital (December 9th) Kaylie has pretty much been sick the entire time with a few days break here and there. A week and a half ago we went and saw the pulmonologist while Kaylie was very sick. It was good timing because we have been dealing with this same type of cough for awhile and her medications did not seem to help. He decided to change up some of her meds in hopes of finding the solution. Kaylie finally cleared up on Friday of this week. Thank you. I pray it does not come back.

Since Kaylie has been out of the hospital we have struggled to maintain her weight. She continues to lose even when she takes in a good 1200 calories a day. During her 18/19 month well baby appt. her pediatrician brought up the word I have been dreading...the G-button. This would be a temporary feeding tube in her tummy that would help us feed her whenever we needed to. Once we no longer have a need for it we can remove it. Jason and I would still feed her 5 meals a day but on days when she is sick and doesn't eat we can supplement her with a night time feed. Jason and I have thought a lot about this. Three of our doctors were on board with this but the feeding therapists from Our Children's were very against it because to them it is a major step back. We understood their way of thinking but they did not listen to us long enough to hear that we were not abandoning the program and we were not doing this because she was not eating. The reason we would do this is because she continues to throw up and continues to lose weight. Their response..."Well its their child!" Thanks for the support.

After a lot of thought and a meeting with the surgeon we decided to do it. The procedure is supposed to be easy and recovery time is minimal. We just wanted to make sure it was the right thing to do. After another week of major weight lose we decided it was time. Our original date for surgery was this past Monday. It ended up having to be cancelled when Kaylie started with her major upper respiratory infection followed by a fever that lasted 2 nights. During this time is when we met with the pulmonologist. He talked us in to waiting until we got her healthy before we made the decision. He said he had not done everything he could do to make her healthy and he wanted us to let him have a chance to help her. He said let him get her healthy, weigh her, and then give it two weeks. He feels if she is healthy she will eat. Common sense! Considering we have an incredible amount of respect for this doctor we decided to adhere to his wishes. With the change in her breathing meds and the change in her antibiotic that we use for her immunity we are finally healthy. It took 7 weeks but we are there.

This past Friday we saw the GI doctor and she was weighed. Since her last appointment she has lost a good pound. The bad thing is that she was weighed an hour after eating and at 4pm so this is not the most accurate weight. Chances are she is 17lbs. 4 or 5 oz. Ouch!

Since she is healthy this will be the starting point. In the next two to three weeks we will weigh her and if she has not had significant weight gain we will go ahead with the procedure. I know it is surgery but I think it will be a huge relief off of all three of us. We saw how much energy she had while she was in the hospital. I would love to have that back.