Chase update

Chase is doing well and is now almost 2 months old. He is requiring a lot of maintenance, but I am really enjoying caring for him. There was supposed to be a home nurse coming every other day, but we've only seen her once! I kind of prefer to do it myself anyway.

He still has his ostomy bag which is simply a pain. The ostomy bag holds all of his waste. He "goes" out of his belly right now until his intestine is reconnected. We will both be glad when it is gone! He is on his TPN (Total Parenteral Nutrition. A substance that is given intravenously and which supplies 99.9% of a person’s nutritional needs. This supplies nutrition until the he can begin to tolerate food by mouth) for 22 hours a day. I cherish the 2 hours that he is off, when he is "cordless". I can hold him more freely and take his out with out having to lug along his big TPN case. We don't know yet how much longer he will need to be on, but he is taking a little bit of milk by mouth every three hours. He is on a prescription formula and will need to remain on that until his first birthday.

He is scheduled for 2 more surgeries in the next few months.

These are his needed supplies...

I have to replace his dressing on his tube every other day, I change his ostomy bag about every 4 hours, feed him by mouth every 3 hours, give him his vitamins through his tube every 22 hours and take off TPN every 22 hours. I keep this info written down, otherwise I get it all mixed up!

Chase is home (for now)

While one of our routine visits to the hospital we were caught off guard when the nurses asked us if we wanted to take Chase home today! We were pleasantly surprised. I have been fighting and fighting with the doctors and nurses trying to convince them to release him. The only reason he was still needing to stay in the hospital was because of the TPN. When I found out that I was capable of doing those treatments at home, I felt there was no reason for him to remain in the hospital. The nurses told me they were shocked to hear me say that because most parents don't want to deal with home treatments so they prefer to keep there babies in the hospital until they are well. That breaks my heart.

Sean Young put up this banner in our apartment with some balloons to welcome our little guy home. Thanks, "Uncle" Sean, we love you.

Chase comes home soon!

Here are the pictures of Chase after the surgery on Friday to place the broviac tube through his chest (the broviac tube is a little like a feeding tube). He did really well and never even needed the pain meds. They took the picc line out of his head yesterday and has an awkward bald spot form where they shaved his head to put in the picc line. The poor kid has holes all over in his body…his head, chest and stomach. :) He comes home this week and we can’t wait! He will require a lot of maintenance, but at least we’ll have a family Christmas at home instead of in the hospital. He will need to be connected to the TPN machine for 20 hours a day (TPN is the “stuff” that goes through his broviac tube and gives him all his needed nutrients). He will have to go back to the hospital in January for 2 more surgeries and will then need to stay for about 2 additional weeks, but then (hopefully) we’ll be done with all this craziness! Thanks again for all you’ve done for us. We love you all and you’ll never know what your service and prayers mean to us.