Kate here - I apologize that our blog posts have been sporadic, but it has been incredibly hard to get to my computer here at CHOP.  The blog should be getting better, though, because we are flying back tomorrow!!!  Strange how going back to another hospital can make me feel like I am going “home.”  We have only been here ten days but it seems like a lifetime.  I can’t wait to blog about our experiences here – many times I felt more like I was on a different planet instead of just in a different state. 

 
Noah will be med-flighted back to the Children’s Hospital at Greenville Memorial in South Carolina tomorrow morning.  Pray for me as we fly.  I absolutely positively hate to fly.  I have flown hundreds of times, and I'm not really scared of crashing or anything - it is the actual physical feeling of even mild turbulence that I find terrifying beyond all reason.  This little Lear jet is so tiny that I can touch both sides by stretching out my arms, so it doesn't take much to make it bounce.  The flight here was very stressful for me.  It is an odd, physical terror that isn't related to trust or anything - I can't even handle going on a merry-go round or a ferris wheel for the same reason (honestly don't even like driving fast on a bumpy road or going fast in a boat).

Noah had surgery yesterday for his muscle biopsy and has a big ouchie going right across the top of his left thigh. They also placed yet another g-j tube while he was in the OR.  He was in surgery for about three hours.  He has been getting feedings through it with mixed results – no actual vomiting, but lots of pain and spitting up.  I expect to see some doctors in a few minutes as we are debating whether to keep going with the feeds or just go back to 100% TPN for now.  They also want to check out his broviac as it is slipping out just a bit.  I don’t think we ever updated on his infection.  It is a staph infection, and even though it is responding to antibiotics, it is a really nasty bug that has taken a LOT out of Noah.  He is only today back to what he weighed 2 weeks ago.  We are really going back not knowing much more than when we came, and Noah isn’t any “better.”  We have had a lot of tests done that couldn’t have been done in SC, and have sort of fine-tuned his list of symptoms a little more precisely.  In other words, I know a little more clearly where he stands right now, but don’t know why or what to do about it. 

 
I need to run.  Noah has been so distraught and uncomfortable that the doc ordered an extra dose of Benadryl to settle him a little.  I really can’t believe he sat still long enough for me to do this – I had just called Jeff to tell him I couldn’t blog tonight!

 
I know I don’t have to list what I am thankful for tonight, because if you have read this blog much at all, you know that not much could make me happier than knowing that I am going to see my sweet husband and wonderful children tomorrow when I get to the hospital.  Can’t wait for those hugs.

 
Love,

Kate

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Posted by Patty

Glad you are getting to go home. I know it will be good to be near the children again even if it is only for visits. I hope soon the test results will be given to you so you will be a bit more updated and know what you accomplished from the trip.

I hope when one of you has the time you could write one of those updates where you bring us up to date. I have been following your blog for a long time but an over all picture would be great. Like how much does Noah weigh now, what are his capabilities now and where does he stand with things.

God bless as always and you are always all in my prayers.

Patty and family

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Posted by Joy Kinard

Hooray!!!! I am so glad Noah is flying home to Greenville tomorrow (and you too, Kate!). I pray for a safe flight and thousands of kisses and hugs upon landing. God is good. All the time.

Welcome Home!
Joy

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Posted by Debbie in NNY (SHS)

Kate, glad you and Noah will be heading back "home". I'll be praying for a calm flight for you.

Hopefully all the tests will give you some results soon and a better course of treatment for Noah.

God blessings to you all!

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Posted by lahbluebonnet

Praying for your flight back (I don't like flying either due to discomfort) and for every need for you, Noah and Jeff and the kids back home.
Blessings,
Laurie

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Posted by Hallmark

Will be praying that the God of all comfort will surround you with His peace that is beyond our understanding, all through that flight. Also continuing to pray for Noah and for your family.

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Posted by ruby from ky

kate i am glad to hear that you and noah are going back to SC tomorrow. i pray you both will have a safe and comfortable flight. i hope the doctors can find a way to help noah soon. i think of him alot. i have a little grandson who is eighteen months old and i can't imagine what you are going though. god bless you,noah, and all your family ruby

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Posted by Cris

I'm rejoicing with you that you will soon all be together!

I'm thankful that Noah is back up to his weight of two weeks ago--will pray for more--wish I could give him some of mine!

Grace be with you all.

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Posted by abhagler

We will be praying for your flight tomorrow. You are in our thoughts as well. God BLess.

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Posted by Kathleen

Dear Kate, peace and joy. I am going to pray that you are aware of every bump and turn. The reason for my prayer is that will mean that your little guy is traveling easy, and you will have some time to focus on you, even if they are strange prayers, I think you know what I mean. Here's to blue skys and no air pockets. *U* Kathleen

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Posted by Anonymous

Kate,
I am praying for a turbulence-free ride home for you tomorrow, as well as wisdom for the doctors as they interpret the test results and try to figure out how best to treat Noah. God is our Great Physician, and He has fearfully & wonderfully made Noah!
May God richly bless you tonight and tomorrow!!
~Judy

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Posted by Anonymous

praying for an uneventful trip, and a sweet homecoming. Praying that the travel doesn't take too much out of Noah...or you!
Love and prayers
Monique

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Posted by InfertilityMom

Yeah home!!!

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Posted by Anonymous

Dear Kate,
We will certainly keep praying for answers!
We are still waiting for the "writing on the wall". It will come for Noah and your family - soon - but in God's time! Keep strong & trust in Him!
I will pray for the plane thing. I am that way, too. Ugh!

Hugs and Blessings from the Kiessling family from Fresno, California

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Posted by Anonymous

Dear Noah,
I hope you're alright from that long trip. I hope you are okay from the past weekend. I hope that you are not crying a lot and giving mom more time. I am really, really glad that you are back from your very long trip. I have prayed for you all this past week.

We are at the beach. I hope you get this letter.

Love, Heather

Dear Kate,
Heather asks about Noah every day and we missed being able to come and visit while you were gone.

We were able to come to Hilton Head with my mom this week so will be coming home on Sunday. It's hot, but it has been a fun time.

We are praying for you and all the little "guys".

Lynnette

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