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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so nerve racking
Praying for you in this hard time.
Hope he gets better. xx
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!
Subcutaneous at home weekly here too. Usually sat or sun afternoon with a movie and pizza.
This makes me so sad. Sending prayers that he gets better quickly and they can get him stabilized. 🙁
Thinking of you all and sending healing thoughts
Unbelievable sadness flows through my veins for Gavin. Many prayers of health & Wellness for him
im so sorry. Im praying for Gavin’s healing and protection right now. Keep us posted please
Praying for an answer and health for gavin
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.
Okay, I see..
My heart is with your family today.
Prayers for you and your family.
Also, he will be able to wear the pump in a backpack and carry on with normal activities.
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
A nurse came the first few times to demonstrate how to put everything together. It’s pretty involved and everything has to be sterile!
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!
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.
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.
Thoughts and prayers. I hope everything comes out okay.
Prayers already sent!!!
It’s a tough call Rob….can a home healthcare nurse do it at home?
Doing these at home is going to suck
Denise Reynolds Laubacher it is the trip. You’re absolutely correct. His body can’t control his blood volume and so he destabilizes….
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…
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.
Thoughts and prayers yur way!
Praying for y’all… Hugs!!!!
So sorry to hear this. Will keep you and family in thoughts and prayers.
Praying for Gavin and asking healing angels to be with him
poor huny. Stay strong…and get well Gavin. Will keep you in our thoughts and prayers.
Sorry to hear. Praying for Gavin and your family.
So very sorry…praying for healing and strength for all of you!
Sending prayers and good thoughts.
Thinking of you all!
Prayers and Hugs for Gavin and your whole family.
Prayers and healing coming your way. HUGZ for all of you. <3
Oh no Rob!! Prayers and healing vibes with answers headed your way!
so sorry to hear this praying for you & your family. stay strong.