Day 98 - A Break!

Today is day 98 of Joshua's life and hospital stay. We have just 7 days until Christmas! And Joshua may actually be home for it!!! He now weighs 12 pounds 11 ounces. He has his nose tube out again today and is doing well. He's had one stool and lots of gas!! I truly believe that he may be healing himself (well with God's help of course!!) and that he may not need another surgery. Boy that would be so wonderful!! But we won't know for a few more weeks, so we'll be patient and keep praying!

So the exciting news is that they've decided to send us home for a break!! We will get to have our baby home for a few weeks and then we'll go back for the surgery if it's necessary. He will be coming home with a central line in his chest for his intravenous foods and medicines. Steve and I will be responsible for the care of that, except for the dressing change on the line. We will be hanging the feeds everyday, flushing the line and adding all vitamins and medicines to the bag of fluids. I began training today. Everything has to sterile because the line goes straight to his heart. So it's a little scary, but I think we'll be extra careful and everything should be fine. They told us they felt very confident that he would be fine under our care. They felt that because we have always been so active in his care and always at the hospital with him, that we would be able to notice any problems and that we would be able to handle all the procedures. Apparently, they don't always feel that way about the parents they have to deal with, so I'm just glad that they feel this way about us.

So everyday, we will have to add the ingredients to his bag of food (using real syringes with needles...aaahh!!), then using sterile procedures we'll flush the line with normal saline and then hook up the new food. Then we'll have to know how to program the pumps to run it. Luckily his pumps will be portable and we'll be able to pack everything up into a backpack so we can go outside if we want or just walk around our house. I'm so excited to show him the outside world. They told me even if it's cold, I can bundle him up and take him out. They're also going to try to work out a 2 hour window during the day when he's off the line, so he can be completely untied from any cords and we can use that time to bathe him or whatever we want. I didn't realize he would be so portable. I had imagined that he would be confined to the area around his bed like he is at the hospital! I'm so glad to know we'll be able to take him around the house and outside!!

We will be under the care of home nurses but they won't be there everyday. They said the first 3 days at home, they will be there to watch me hook everything up to make sure I'm comfortable with it. Then they will come at least once a week to draw blood for labs, change the dressing and assess him. Then we will also be going into the hospital once a week for a "clinic" visit where we will meet with our doctors and nurses to go over how the previous week was and to make plans for the next week. Plus we're never more than a phone call away from his surgeon and the home care people. His surgeon is the one who really got this going. I'm so glad he's all for this. We trust him, so we know this has been really thought out and he is certain that Joshua will be fine.

So hopefully, if all goes well, he'll be home right before Christmas. If not, then at least within a day or two of it, and we'll wait to have our celebration for when he is home. I have matching jammies from Disney for them to wear overnight and for the Christmas morning and then matching sweaters to wear during the day!! I'm so excited!!

These pictures show Joshua with his mohawk!! I washed his hair last night before he went to bed and brushed it up and it stayed last night and today!! I thought it was so cute!!

I have my next lesson tomorrow and then I'll keep practicing next week. Hopefully we'll be out of here in time for Christmas!!! I can't wait to get my baby home!!