This week started off pretty good. We brought Jake in to Children’s on Monday to have surgery to close the tracheal fistula (stoma/hole). It was the first time for surgery without the trach. The anesthesiologist came and talked to us, said he was going to do a fiber optic intubation instead of the typical laryngoscope. Surgery went just fine, intubation was fine. We stayed overnight in the hospital, all three of us. One of us slept with Jake in the big bed, the other on the oh so comfy chair bed. He was SUPER congested, it sounded like he had a chest cold in his throat. YUCK! He slept on and off, not very restfully but he did get a bit of sleep...we didn’t...two hours max. I had to go to work on Tuesday, no way around it so off I went, before his ENT (the surgeon) came by for rounds. Jake’s blood oxygenation levels dipped below the desired level once overnight so the residents were not sure how Dr. B would proceed. She when she did come by, she thought Jake looked fine and let him (and Andrea) go home. A BIG thanks to my mom for picking them up from the hospital!!!
Tuesday night he was still congested and after sleeping for about an hour he was wide awake. He stayed awake until about three when we went back to bed and he slept till morning. Drea and I didn’t get much more sleep than the previous night so Wednesday was a tough day! My mom came and stayed with us Wednesday night and she took care of his needs all night. We were able to get a solid nights sleep...finally.
He was still congested but nothing really new on Thursday. His nurse said that she noticed his chest retracting (caving in when he was breathing) once or twice...again, at this point nothing to really worry about. We settled in for the night, finished feeding him and had him ready for bed. He was drifting off to sleep when he started sounding more and more congested. We gave him an albuterol nebulizer treatment which helped for a few minutes. Then, all of a sudden, he started retracting, struggling to breath and looking really uncomfortable. Then, he threw up all over the place. The poor dogs got nailed! He started looking really strained/pained and he lost any/all color in his face. That’s when we 1) started another nebbie (nebulizer) treatment and 2) called 911. The paramedics - ambulance and fire truck - were at our house within 3 minutes. Jake got his first ambulance ride with Andrea in tow. My mom was on her way and picked me up...thank God...and off to NW Community we went.
They got him stabilized with a combination of an epinephrine nebbie and a steroid. He got the steroid AFTER they were able to get the IV started. For those of you not aware of this arthrogryposis bonus, AMC kids (probably adults too) are notoriously hard to stick. They have small, squiggily, hard to see and find veins. UGH! The two fantastic Peds ER nurses at NW got it in two tries. So now he’s stabilized and they told us they’d be transporting him to Children’s. Jake (and Drea) got his second ambulance ride from the burbs into the city. At this point he was doing much better and I think he actually had a little bit of fun getting a ride in the rig!
Fast forward to today. He’s been doing really well all day, even clearing some of the congestion by coughing just as he should. They decided that he should stay another night just to be safe and we are absolutely ok with that! My mom is heading down to relieve us for the night since we really haven’t slept much this week. It’s been exhausting but hopefully this will be the worst of it and Jake will be able to go home tomorrow without further troubles!
As usual, we need, want, and appreciate all the love, hugs, kisses, good thoughts, good vibes, and positive energy all of our family and friends send our way. We couldn’t make it through all of this without it!!!
13 Comments 
Gosh what a time the three of you have had in just a few days. I'm glad Jake is doing better. He is a tough little guy.
Steroids are not fun to be on but they really make it a lot easier to breath. I'm glad the ER nurses were able to find his vein in just two sticks.
I'll continue to keep the three of you in my thoughts and prayers.
Sharon
Steroids are not fun to be on but they really make it a lot easier to breath. I'm glad the ER nurses were able to find his vein in just two sticks.
I'll continue to keep the three of you in my thoughts and prayers.
Sharon
Saturday, August 22, 2009 - 11:01 AM
My prayers and positive energy are being sent to Jake and the mommies. This must have been so scary for all of you. Glad to hear Jake is doing better now and I hope this is nothing more than a little "speed bump" as Jake goes forward.
As I've said many times, Jake has such an amazing spirit...and so do you and Drea. I'll keep you in my preayers.
Love to all, hugs to you & Drea and kisses to Jake,
Judy
As I've said many times, Jake has such an amazing spirit...and so do you and Drea. I'll keep you in my preayers.
Love to all, hugs to you & Drea and kisses to Jake,
Judy
Saturday, August 22, 2009 - 11:20 AM
What a terrifying ordeal you guys went through. We are glad to hear that Jake has stabilized. Thank goodness you have Nurse Grandma, Mary Anne, nearby to help.
We continue to pray for Jake and keep all of you in our thoughts and prayers.
Love,
Bruce and Edna
We continue to pray for Jake and keep all of you in our thoughts and prayers.
Love,
Bruce and Edna
Saturday, August 22, 2009 - 12:33 PM
What a scare! So glad everything turned out well and hope all are catching up on lost sleep! You three are always in my prayers.
Love, Deb
Love, Deb
Saturday, August 22, 2009 - 02:37 PM
Wow. Poor little guy. My love and prayers to all of you.
Saturday, August 22, 2009 - 03:12 PM
Thanks for keeping us posted during this very trying time. Your mom is the very best. I am so glad she is there for you three. She is a wonderful mom and an excellent nurse. You two must have been exhausted and very anxious through all of this. I am so relieved that Jake is such a trooper. That little guy comes through so much and you two face each challenge with him with such courage and strength. As always I keep you in my prayers and thoughts and especially hope that you all will one day soon be on the other side of all these surgeries.
Saturday, August 22, 2009 - 07:38 PM
Hello Betsy, Drea and Jake, I forgot to add my name to the above comments. It is I Aunt Chris still sending my love.
Saturday, August 22, 2009 - 07:40 PM
thanks for all the updates. so glad jake is doing better. hope you are too. love mama barlo
Sunday, August 23, 2009 - 08:50 PM
My dear Betsy and Andrea and Jake, He will make it thru this You gals are my heroes. Jake is a hero too. My thoughts and prayers are always with you. luv bobbi
Monday, August 24, 2009 - 07:58 AM
God never gives you more than you can handle. Jake is with whom he was meant to be with. I love you both (and Grandma, too!). You're in my thoughts.
Monday, August 24, 2009 - 09:44 AM
I am so very glad that Jake and you all are doing fine. My prayers are forever with you.
Dolores
Dolores
Monday, August 24, 2009 - 12:14 PM
Betsy,
You are so positive, and it seems like Jake can really take anything too. Like mother like son. :)
You are so positive, and it seems like Jake can really take anything too. Like mother like son. :)
Tuesday, August 25, 2009 - 09:42 AM
Hi Guys
This is just a speed bump for Jake. He is such a tough little Guy. I know the Almighty is holding Jake tight to help him through all of this. He is also holding you two tight also to give you the strength to manage all of this. And for my sister she is a saint all by herself. I love all of you very much. Can't wait to see you in a few days. My prayers will still continue for all of you.
Love
Auntie Jo-Ann
This is just a speed bump for Jake. He is such a tough little Guy. I know the Almighty is holding Jake tight to help him through all of this. He is also holding you two tight also to give you the strength to manage all of this. And for my sister she is a saint all by herself. I love all of you very much. Can't wait to see you in a few days. My prayers will still continue for all of you.
Love
Auntie Jo-Ann
Wednesday, August 26, 2009 - 11:58 AM
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