And it doesn’t seem to be a train. The last two days Cutler’s WBC has dropped from 11k to 4k yesterday (without neupogen) and then to only 3k today (without neupogen). Dr Weinthal was very pleased with the 3k as he expected it to drop to 1500 to 2k. He is now talking about what we can do to get Cutler home despite his slow progress on the bottle. Melanie talked to him this morning, but this is what I understand so far…
Option 1 is to get a pump at the house and to run the tpn during the evenings, pretty much like we do here. His only concern with this is the chance for infection as we would still be using the lines he has running straight to his vein.
Option 2 is to have a feeding tube put into his belly where we would just inject the nutrients. The negatives to this is that he would have to go under general anesthesia, but any potential infection would not spread throughout the bloodstream immediately as it would be going only to the stomach.
From what Melanie has explained to me about her discuss with the doctor is that they would probably prefer the feeding tube as it would also help stimulate hunger because it is going straight to his stomach. Will see how I interpret the conversation tomorrow when I get to speak to him and then we will make a decision together.
Now on to the time frame and again this is all speculation, but it sounds like that at the latest he will be home by next Friday. And this all depends on the route we take, whether we go tpn or feeding tube. I believe if we go tpn, he could be home sooner, but we can’t make our decision solely on this. Let’s hope that Cutler will take the decision out of our hands and just start feeding from the bottle. The occupational therapist is now working with him daily, so you never know. He has definitely surprised us before.
Because it is so hard to find any new poses of Cutler for photos in this small room, I decided to take a quick video of him playing while laying in his crib. It’s funny how he talks so much, until he realizes the camera is on.
Team Fricke 
Thanks for the update. I just love to watch the videos. I will continue to pray for Cutler to drink from the bottle. God is listening and will help guide you with this dilema.Love and miss you all.
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We’re so happy to hear the great news. God is always listening and working for us!
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This is wonderful news! I know you will be so happy to have Cutler at home with you. It sounds like there is just this one last detail to be worked out. Therapy can work wonders—we continue praying for Cutler and all of Team Fricke each and every day.
Love,
Aunt Linda & John
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Come on CUTLER!!!!! Drink from the bottle like a good little nephew!
He is so adorable it makes me smile everytime I see his videos!
GOD is listening to all of us so let’s all pray HARDER and LOUDER 🙂
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Love the title to this post..there is a light and so glad. We will continue to pray for Cutler to drink from the bottle and develop this skill again. We had our son on ‘home tpn’ thru the night, several times. It went fine, for short term. Maybe the doctor is thinking, longer term therefore the -g-tube process. I know you have enough to sort thru, so just know we are praying the answer in how to proceed, will be clear and offer Cutler the most success…hugs and prayers,
In Him,
Hand in Hand Ministry at FC
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Cutler, you are a little doll! So happy that there will soon be that “light at the end of the tunnel” and you will have your family together again!
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We’ve been thinking about you so much and have been unable to follow your updates lately. Trust all is going smoothly. Easter Blessings!
Judy and Don Dhsen
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