Urgent: Please Pray for Gavin, he’s crashing at his infusion

A few minutes before we arrived at Akron Children’s Hospital, Gavin sorta slumped over in the van.  I got him up to the infusion lab and they immediately got his vitals.

His BP was low and he’s lost another 4 lbs since last month.  He’s down to 110 lbs. 

He says he’s okay but just tired….

The problem is that he’s not okay because he’s really unsteady and lethargic.  I have no idea what we are going to do at this point.  Right now we are just waiting in his room for the doctor to get here. 

This is happening more and more often now.

Please keep Gavin in your thoughts.  I think we are going to get him to the ER…

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rjones22

so nerve racking

Heather Carlisle

Praying for you in this hard time.

Charlie Bolton

Hope he gets better. xx

Rosie Ozlem Ciotto

We used to IVIG him once a week in his doc’s office, usually entire thing took 4 hrs. Worth it! I am sending my motherly best wishes for Gavin…hugz baby!

Mary Franzen Costello

Subcutaneous at home weekly here too. Usually sat or sun afternoon with a movie and pizza.

Angela Cavallo Hager

This makes me so sad. Sending prayers that he gets better quickly and they can get him stabilized. 🙁

Michelle P

Thinking of you all and sending healing thoughts

Jessi Lynn Small

Unbelievable sadness flows through my veins for Gavin. Many prayers of health & Wellness for him

Kariman Shama

im so sorry. Im praying for Gavin’s healing and protection right now. Keep us posted please

Shirley Stavedahl

Praying for an answer and health for gavin

Sylvia Vann

Praying

Lisa Garcia

Hi Pam,
It’s Norma, I feel so sad that I can’t be there for you to console you, to be a shoulder to cry on, that I lost touch of our friendship. But I will be praying for Gavin, that he gets the medications that he needs to help him recover from this episode and he gets home soon for Christmas. Love you and your family. By the way I go by Lisa now because on the military they would always get my name wrong they would call me Norman thinking I was a man and they couldn’t say my last name so, I finally said ok just call me Lisa. So if you don’t mind I am going to call your mom and get your phone number from her.

Rebecca Nastasia

:'(

Denise Reynolds Laubacher

Okay, I see..

KimTodd Kennedy

My heart is with your family today.

Rebecca Bishop Curriden

Prayers for you and your family.

Leyane Schaefer Kolsto

Also, he will be able to wear the pump in a backpack and carry on with normal activities.

Katie Eirich Harris

Praying!!

Pandy Nicholas

I don’t know if it helps. I do my sons subcutaneous immunoglobulin infusions at home every Saturday morning. I’m amazed at how calm and relaxed he is. I hope everything goes ok xxxx

Leyane Schaefer Kolsto

A nurse came the first few times to demonstrate how to put everything together. It’s pretty involved and everything has to be sterile!

Leyane Schaefer Kolsto

We do SubQ infusions at home weekly. Taking a break at the moment, but it is pretty easy compared to the hospital setting. We do them in the evening before bed. Needles are tiny. Takes about 90 minutes to infuse. We choose to do it right before bed because taking a shower immediately afterwards seems to really help with the itching and the swelling at the infusion sites. Good luck to you!

Lost and Tired

Denise Reynolds Laubacher no. This is something we would do ourselves. It’s done subcutaneously, through a mini pump about the size of a pager. It has to be done every week and the needle is tiny. It works like an insulin pump. He would likely miss school on these days and it may need done more than once a week, depending on his dose.

Kelly Lanzarone

Praying!

Rachel Stein Rosner

My son has the same thing and we are pretty under control at the moment. PM me if you want to know what we do. Hugs to you and Gavin.

Kristine Lackner-All

Thoughts and prayers. I hope everything comes out okay.

Lisa Swanhart

Prayers already sent!!!

Denise Reynolds Laubacher

It’s a tough call Rob….can a home healthcare nurse do it at home?

Lost and Tired

Doing these at home is going to suck

Lost and Tired

Denise Reynolds Laubacher it is the trip. You’re absolutely correct. His body can’t control his blood volume and so he destabilizes….

Denise Reynolds Laubacher

I was going to say, maybe it’s the trip…I know one of my son’s would have a terribly hard time with that…

Pandy Nicholas

xx

Karen Denniston

praying..

Lost and Tired

Thanks everyone.

Lost and Tired

We’re in the ER now and he seems to be pulling out of it. His vitals are climbing but he still doesn’t look right. Unfortunately, because this is so incredibly rare, no one knows what to do because the treatment appears to be contraindicated, in regards to what his symptoms are.
Hopefully, we can still squeeze in his infusion today but I think we may have to start doing these at home. He just can’t handle the trips.

LaTonya Banks

Thoughts and prayers yur way!

Pamela Smith Gaskin

Praying for y’all… Hugs!!!!

Faith Shumak Dantowitz

Prayers!

Stephanie Roush Roberts

So sorry to hear this. Will keep you and family in thoughts and prayers.

Michelle Spradley

Praying

Kim Bailey

Praying for Gavin and asking healing angels to be with him

Alexia Herbowy Conrad

poor huny. Stay strong…and get well Gavin. Will keep you in our thoughts and prayers.

Mark N Kathleen Visscher

Praying.

Celeste Johnson

Sorry to hear. Praying for Gavin and your family.

Christa Janotha Smith

So very sorry…praying for healing and strength for all of you!

OnyxPanthyr

Sending prayers and good thoughts.

nicoleincos

Thinking of you all!

shawneerenee31

Prayers and Hugs for Gavin and your whole family.

mkosmicki1

Prayers and healing coming your way.  HUGZ for all of you. <3

HandbookMomma

Oh no Rob!! Prayers and healing vibes with answers headed your way!

JesGresh

so sorry to hear this praying for you & your family. stay strong.

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