Things are very intense around here regarding Mr. Gavin. For the past four months or so he has been becoming increasingly symptomatic of his autonomic dysfunction including small twitches that have now become full blown tremors, respiratory issues that revolve around crazy big drops in O2 saturations and also sleep issues -- just to name a few.
As most of you know Gavin tends to be a very fatigued and a sleepy guy. It is not strange for him to sleep 20 hours a day -- His body thrives on this kind of sleep. Well as part of the autonomic dysfunction Gavin is also having periods of insomnia. He is so tired but just can't get to sleep.
It's been 48 hours.
48 hours.
Adam and I are so tired. We were "nurseless" this weekend and therefore we were getting up to make sure Gavin was safe anytime he would start to cry, which was practically all night. I have been begging and pleading with the doc to try to figure something out for him but it seems like they just can't figure anything out. Gavin can only have IV medication -- which is making things difficult. He is also now running a fever. 101.3. Not high, but to high for still being on two antibiotics. His fluid from his belly is rotten which means things are headed in a bad direction. Just praying that we can hold off on a hospitalization until November.
I'm just to stressed right now.





21 comments:
I'm so sorry - I'm praying that the doctors can figure out the best medicines for Gavin to bring him comfort and relief - I check everyday to see how Gavin is doing - he is such a beautiful little boy and it breaks my heart just knowing that he is going through so much (as is your whole family!)
Just know that I'm praying for you all!
Kathy in Texas
I'm off to church so you can bet I will be saying many prayers that the Drs find something to help Gavin sleep and for you to be able to rest as well.
Sheila
Oh I hope you all get some sleep. I'm glad you posted because I've been thinking of you guys over the past couple of days.
Wishing for some sleep for everyone & some reduction in symptoms for Gavin.
I'm so sorry. I'll pray for Gavin (and you) to be able to sleep. I know how exhaustion makes everything so much harder.
Truly, I wish I had something of value to say, but I don't. I just didn't want you to think your words were falling on deaf ears.
Holding sweet Gavin and you and your family in my prayers. I wish I could do more :(
Praying for rest for you and your family. Be blessed and be safe in Him! ~Debbie Heisey
So sorry to hear this. I am still praying for Gavin!
praying for you karen. so sorry to hear what a stressful time this is... and you're moving on top of everything. praying you all receive some rest soon.
I am so sorry for you. I wish I had better words to say, I honestly do. I can't begin to imagine being awake that long with a sick child. I am glad you posted. We're all here for you guys.
Still praying as always for you all.
Tina in Saskatchewan
Dear Dr. Jesus,
PLEASE give this family some rest.
Thank you,
Amen.
Prayers for all of you. God bless your little fighter! Please call or email me - I will take a shift so that you and Adam can get some rest.
Joy
Praying for Gavin and his family.
Still praying for Gavin.
Oh my goodness, how rough! I pray pray pray that he gets some sleep and you guys can too. Hope he gets better soon.
Oh my gosh Karen that sounds so stressful and exhausting. I'm so sorry you and Adam and Gavin have had such a tough weekend. We will pray harder for him and pray he gets some much needed rest, very soon. Gavin and the whole family are always in our thoughts and prayers, and most especially will be today. God bless you all!!
Our thoughts and Prayers are with you Always. I storm heaven for some answers for all of You:(
Much Love to All
Praying for your little guy.
I'm still here too. Hang in there, mom.
I am so sorry.. praying for peace and relaxation fo ryou all..
Lifting you and your family up in prayers.
Take care,
Amy
www.crumbsonmyfloor.com
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