Home sweet home
We are finally home. Hayden was released late Friday afternoon after they gave him a large dose of prednisoLONE through his IV. Thank you Dr. Reeder at Dean for suggesting that! Friday started out good, he was breathing well, even slept through the night, waking up only for his nuk. By 5:30 he was done sleeping so I fed him, and made him go back to bed. He played for a bit and then fell back asleep for an hour or so.
Saturday was different. He was so ansy, almost hyper from the prednisone. My parents were down to bring Abby back home so I had a little help with him most of the day. Rick found that the “Johny Jumper” really lets him exert the energy the prednisone (steroids) give him.
Last night was just a blur, Rick and I were up with him most of the night. He started coughing, which is good for crupe, but that made him wake up every couple minutes. Once he even coughed up a large amount of flem. We did end up calling UW hemotoligist to get advise. With the cool mist vaporizer and him sitting upright in his carrier we all got through the night.
Uncle Dan and Aunt Lori brought Abby to church this morning while Rick went back to work to do more taxes. The end of tax season is near!!!!!! I can’t wait to have him around more. Either can Abby.
Hayden is napping now but sounds like a little pug, or chihuahua with his breathing. (sorry Tugboat and Cassie). I will continue to monitor him to make sure his fever doesn’t go above 100. Then we go in. He has decreased his eating, but not enough to worry yet. After all he is 20lbs at almost 8 months old.
I now know how to draw Hayden’s blood for his labs through his hickman. I passed my exam with the nurse before we left UW Friday. It is a bit scarey doing this, but so is the daily flushes and dressing changes. Just as long as I keep everything sterile, we will be in good shape.
I am going to see if Gma can stay with Hayden again on Monday since he isn’t out of the woods. Abby can go to daycare, since I know she misses it. This week we will start our interviews with MN hospital Fairview to see what their protocol is with WAS transplants. Both Rick and I have been reading throught the material for the transplants, but will need to consult their transplant doctor as well.
April 7th, 2008 at 11:50 am
Kami - we just learned of Hayden having WAS from your mom. We want you to know that he and your whole family will be in our prayers. I haven’t had a chance to read through the site yet but will as I know nothing about this. We saw Abby walking in your parents backyard and couldn’t believe how tall she was. It looked like her and Grandpa were having a good time! We will keep in touch and follow Haysen’s progress. Like I mentioned to your mom if there is anything either George and/or I can do to help in anyway please don’t hesitate to ask.