We have GREAT news, good news and then a little not so good news....
Great news...I have about a 45 minute long play session with my little man...He wanted to play Dinosaurs. I was so happy to see life back in his eyes even if for a fleeting moment.
Good news....It is NOT Shingles.
Bad news....They are not sure where or why he got the Herpes SO bad. At this point though I dont care.
We did have two bad episodes of the explosive poo this morning. In away though that is good. They got to see first hand not only how bad the bleeding has been but also the other not so fun stuff that has been going on now for almost six days.
We will not be sent home now until he can eat and drink freely through his mouth. they dont want to send us home any sooner in case there is an infection.
He has been on the Anti-viral via IV now for over 12 hours. We had hoped that would stop the spread of more herpes, that has remained to be seen. He know has them forming on the skin around his mouth and nose. so whether those are brand new...or were there yesterday and just not as bad...we will have too see.
here is my question. Today was his Pre-k graduation. His Best Friend Meilani and her mama would like to come and see him. the hospital has ok'd it...but his mouth is very scary looking. I am thinking maybe mama should come and maybe wait to bring Mei. What are your thoughts? my mama bear is saying have her wait...I dont want it to upset her. Gieger has said he really want to see her though...What would you do?
Our Pastor came and saw us this morning. He hung around to pray and just sit with me. Grandpa came and sat with him so I could go don and get food.
Thank you for all of your kind words, thoughts and Prayers. No one wants to go through this..but sometimes you cant get around it...So, it is nice to know That I am not alone.
I will keep you guys updated as things move...We are not going anywhere for now...Which I am thankful for. I dont want to think what today would have brought had we not gotten in last night. I was pretty terrified when I posted yesterday. All I wanted was for someone that could help to listen to me....noone saw what I was seeing, he had not bled infront of his doc the way he was with me at home...getting someone attention on the matter was just frustrating.
You all are in my heart and I hope Tuesday and the riest of the week treats you well..
More soon
Libby
It is Herpangina...Spelling is probably extremely wrong. It is something he could have picked up andwhere...You can carry it can never know...Or like Gieger have an outbreak like the one he is having. The first Doctor we saw today told me she has never seen it as bad as he has it. The Floor attending Pedia doc...has only seen it this bad three times. So, we have a better diagnoses now.
I am staying strong and resting while he is sleeping. It hurts to be doozing off and hear him startle from a dead sleep, screaming....I am hoping totday is the last day I have him in that much pain. They are able to keep him comfy for the most part...
Mei's mama is going to come up alone tonight, just so he sees they are thinking and praying for him...We will hold off on having Mei come, I dont want her to have any memory of her best friend sick in a hospital bed...That is not something I think a four year old shud have to carry around....The family has been praying together for Gieger's speedy recovery..We had a chuckie cheese playdate scheduled and we are just keeping their spirits up talking about that with them. Mei's mom is mom is dear to my heart and knowing she is coming up to show Gieger they love him is very warming for us..
When I say that I ''Dont care'' I say it in more of a relief tone...Just knowing it is not Shingles for sure was just a big weight taken off my shoulders...Because kids this little ''Shouldnt'' be able to get it...and to this extreme. So I was not saying I dont care what it is I am just glad it is not that...I/we now have a huge task of finding out what caused this flare up to be SO bad...but wwe may never know. It could be that his immune system was so shot from the tummy bug he had nothing left to beat the Herpes...and we do have a history of ORal herpes I have found out in our family. My little sister had a case when she was younger that was not as bad but close to it. She had them spread to her hands because she sucked her thumb.
Glad he's exactly where he needs to be, and getting what he needs.
Personally, I'd let them get together once he's home :)
Good luck!
Glad things are at least starting to improve possibly and that you have a diagnosis.
With having Mei's mama come, maybe Mei and Gieger could talk on the phone for a minute. Let them connect, but yeah, not so scary for her.
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I hope and pray that they can get whatever this is under control quickly and soon.
Personally I would be pretty hesitant having visitors other than family and very close friends if I were in the same situation when the doctors don't quite have things under control. I would also be concerned about this family being able to keep your child's medical issues private and not turning into school or town gossip.
However, if you trust this mom then you could definitely use the real life support. And maybe that outweighs anything else if she's a trustworthy and good friend.
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I have a fun idea for the kids to see each other....why not buy each a hand puppet and fun mask? That way they can still interact without passing any contagious germs (if any) and little Mei won't have to see how bad her buddy looks. Then again, some kids are just immune and no matter how bad another looks they still just see the same kid:) Glad you are at least getting somewhere with all this, but good luck on getting your child to eat/drink, prayers are being said for your family:)
I'm very glad to read this update, Libby. Praying for you to find the strength and direction you need, for the doctors to gain clarity and answers, and for your little man's health and speedy recovery.
Please don't let Mei see your son at this point. I get how badly they would like to see each other, but I seriously doubt the experience will be good for either one of them.
My oldest son, he was 5 at the time, wanted very badly to see his Daddy when he came out of his 1st surgery. We let him. We probably shouldn't have. He still talks about it to this day and it was 2 1/2 years ago. It was very traumatic.
I am SO glad to hear Gieger is getting the care he needs and deserves!! I will continue to keep you and your family in my prayers!
Poor guy... nothing to say but I hope the little man feels better ASAP! Make sure you're getting enough rest too. HUGS!!
With respect to young friends seeing a friend in pain/disfigured, etc. we found some kids were very sensitive and others very resilient. When my son suffered a severe traumatic brain injury when he was 10 we left it up to the parents to make the call on whether their kid would likely be upset by a visit.Taking a photo to show the parent, or to show the friend in order to better prepare them was often helpful and gave either the parent or child a chance to ask questions freely and not in front of my son.
It was often surprising which kids found the devastating nature of his injury and change unbearable and those who rolled with it. My then 2 year old nieces were amazing and participated in his therapy while some of his 10 year old friends could never really see him again.
Stay tough in the hospital and stand your ground, listen to your gut and do your best to make them listen to you. They will try to make you think you're crazy - or will make it clear they think you're crazy - but you're not. Doctors aren't smarter than you, they just studied something different in college than you did - and what they studied required a lot of memorization and way too little problem solving. In our experience over the last 12 years doctors aren't always good with things that push them outside their comfort zone - like a herpes out break that they've never or seldom seen.
Hang in there and grab sleep when you can and help when it's offered.
Thanks for the updates. Your family has been in my prayers. I hope you see real improvement in coming days.
So glad that he is feeling better! I am happy that things are getting done around there and you are staying as long as necessary.
Wonderful that you two were able to play together and that you saw a little happiness come out of it.
I would tell his friend's mom that it might be a little shocking and leave it to the mom to decide whether she thinks she should come or not, and if you have a feeling that she shouldnt then go with your gut and encourage them to wait just awhile longer.
Stay strong, and tell that boy to keep getting better! Hugs all around.
Keep us updated when you can, been thinking about you guys! <3
Oh Libby, I am so happy that you are finally getting answers and that Geiger is getting some relief. I will keep you all in my prayers and thoughts.
God Bless
Thanks for the update! I've been wondering how he is doing.
I know your lil man is probably wanting to see his friend, but I think you are right about waiting, it might be hard on her to see her friend in pain.
We'll keep on praying!
Thanks so much for the update. I hope he improve very quickly. Gieger and the whole family are in my prayers.
Thanks for updating us. Will continue to pray for you all.
I will send you a private message
