Tired and Frustrated

This has been a tough week for the Up Family. Tuesday, Kelsey got a more permanent abdominal drain and it was not what we were expecting. They say they were going to have to tunnel it under the skin to reduce the risk of infection and it would also last longer. But what they didn't say was that this tube was that they tunneled under her skin was huge!! It was another surgical operation. They talk about giving Kelsey time to heal but they keep doing procedures on her little body making it hard for her to really heal. Her chest tube came out several day ago and they were hoping they would not have to put it back in but last night she had a lot of fluid in her lungs so the chest drain is back in also. Yet, another procedure.


They still don't know exactly why Kelsey has all this fluid. They know the liver it probably the biggest to blame yet that shouldn't cause fluid in her lungs so she must have some vascular or lymphatic issues also. They are trying different things to help but most of the things they are doing to keep her stable are also making her worst. She needs the vent but the longer she's on it the hard it's going to be harder to get her off. The vent also damages the lungs. She also need very strong diuretics but those are hard on the kidneys, so they could get bad at any moment. Kelsey also has a ton of gas in her belly so they are trying a different formula to see if they can cut down the gas but to do this they had to put her on TPN which is hard on the liver. Kelsey definitely doesn't need anything that makes her liver worst. They also needed the TPN because they stopped her feeding right before her surgery Tuesday. Luckily today they took her off TPN. All of these are necessary but they have side effects that aren't the greatest for Kelsey's situation.

Yesterday, Kelsey was 6 months old!!! Andy and I never imagined she would still be in the ICU 6 months later. It's getting harder and harder the long she's there. We are constantly reminded how sick our little girl is and the fact that we could lose her is always a possibility. We try not the think about it but it's always a reality. I know my little girl is a fighter and also know she has come a long way but she has so much more to go before she's out of the woods. All we can do is pray and trust God but that is getting harder and harder to do. When I'm sad I read God's word and all the notes and comments other have made to encourage us (thanks), listen to my favorite Christian music and Pray Pray Pray. I would love to say I always feel better but the reality is just because I want to feel better sometimes you just feel sad, and that's ok!!!! God still loves us more than ever. Our Sunday school class has a motto "struggle well" right now it's more struggle than well. I know God is there and has a plan and that this is just a season of our lives but we are ready for the next season.

Trying to struggle WELL

Patti