Thursday, January 18, 2007

Returning is Harder Than Staying

Abby here. Wow is it good to be home. Ellie is doing great. She is not back at 100% but she is on her way there. She seems to have a bit of a cold, but we don't know if it is from the intubation during her surgery or something that she picked up the in the hospital. There are so many bugs that live in hospitals that you feel like it is almost inevitable that you will catch something. But for now she seems to be doing well.

For the eight months that Ellie was in the hospital people we would meet would comment that they thought it was amazing that Gib and I were able to do what we were doing. That we were able to still be smiling after having been there so long. We were always amazed at those comments because hospital life didn't seem that bad and we had gotten used to it and just did what needed to be done.

Now that I have been home with Ellie I have a new perspective on the situation, going back was very hard. It is the lack of control that gets you. For instance, if it was time to give Ellie a bottle, I have to go find some one, who then has to find some one else, to get me a bottle. Then, I have to go wait for my turn at the microwave to warm up the cup of water that I use to warm Ellie's bottle. So half and hour later I am ready to feed her, but a doctor, Administrator or a nurse stops by to talk to me or to look at Ellie. They leave and we are back to the microwave. Throughout this whole process I am carrying Ellie because there I can't just leave her in the room. So what at home would take about 5 min, takes about 45min in the hospital. That and the administration of her meds and TPN is another thing we have no control over when we are in the hospital.

It was also very hard to watch Ellie be afraid of nurses and doctors. When we were here the first time, Ellie loved all the nurses and never greeted any of the doctors with tears. But this visit was another story. She was clingy and very apprehensive of anyone new that came into the room. For the first few days she and I had to take naps together because she didn't want to be left alone in bed. It wasn't until the last day that she was okay with the nurses. But anyone in a white lab coat still got a good scream.

I am more worn out from these past five days than I was from a month in the last visit. It also gave me a very good lesson on how much control I have over Ellie's health. There are some things I can control. Colds, stomach bugs, hydration, and feeds. But, I have no control over freak things like whether her intestines turn inside out or not. It was a speed bump that they told us about, but no one thought that it would require another surgery to fix. This visit made me realize that we will be back at Children's more than we think and for things that we have control over and things we do not. We may be what the nurses referrer to as "Frequent Fliers."

The good news is that everyone was very impressed by her progress as Gib mentioned. She has gained over two pounds in just over a month and is taking decent sized bottles. She is walking and talking more and generally had everyone "saying wow she looks so Big!" So, it sounds like Gib and I are doing something right here at home. So we will just keep plugging away, stressing about Ins and Outs, changing diapers, dressings and feeding bags and having a great time playing with our girl.

Oh yeah and she now says "Ga" and that means Gus. While we were in the hospital you could ask her were Gus was and she would say "Ga" and look down and all around the floor for him. They had some quality reunion time this morning which included Gus trying to share his beloved Kong with his sister. It was a sight that the doctors and nurses at children's would have cringed to see. Don't worry I was quick with the antibacterial wipes.
Hey, look who joined team Ellie!


Anonymous said...

His sister????? The thought of her looking at the floor for her buddy made me a little teary, and then the sister thing made me laugh. He is a good dog. You are great parents. She is a spectacular child.

mini and brother said...

Congratulations on being back home. I'm so glad Ellie is growing and gaining weight. Two pounds in one month is awesome. I'm glad to hear about being approved for the night nurse. You guys are an example to all of us with our 'special' kids. When I make Scott's Elecare I always think

Emily Phillips said...

Ellie's two lower teeth are so cute, she really makes me laugh when I see photos of her teeth. She is so very cute. I am sure Gus is really happy to have his play-mate back!