Prayers needed

[bacpacker]

You are all still in my prayers. Glad he is making progress. More to come along the way.

[Katrina]

New update today from niece Thank you all for keeping him in your prayers.

• At transplant clinic this morning, the doctors said the MRI came back "normal" with nothing to be concerned about - Yay! ... the facial asymmetry/droop is still a mystery tho, so they suggested we see neurology at Dartmouth (to save another trip to Boston) ... so we'll be working on getting a referral for that
• We're weaning/tapering his steroids and they're putting in a new prescription for a different drug to help with his chronic GVHD (the skin/muscle tightness, especially in his feet and hands) ... the drug is called Rox-somethingerother (I don't remember the exact name) ... they said they've had good results with this medication, but it can take a while to start seeing results, like 6-8 weeks just to *start* seeing any kind of results ... they also said that because it's not as commonly prescribed as steroids, it might take longer for insurance to get the prescription filled (one reason we started the steroids asap) ... the reason for switching is because, while the steroids have helped his GVH is the past, we don't want to keep him on steroids for too long ... he'll be on the new medication until it's no longer needed (assuming it works for him) ...

• they're also going to talk to their GVH Dermatologist about a special "steroid shampoo" for his scalp because they are noticing the skin tightness around his hairline, and his hair loss (looks like he has a "receding" hairline already) ... they said that sometimes the GVHD can affect the hair follicles, causing very coarse hair, and even baldness, so they are going to look into a treatment for that as well
• during our previous visit to Boston (2 weeks ago) he also saw PT - she recommended that we see an orthopedic doctor, to get custom braces for his feet, because his toes are so tightly curled ... so we'll be working on getting a referral for that too.
• his next Boston appt will be to check labs (as usual) and see how the chronic GVHD is doing ... that appt is scheduled for May 8th!

[Katrina]

I want to let you all know My Grand nephew is in hospital. Niece posted this this morning
"Pneumonia and GVH of the gut - very serious - his heart stopped for several minutes but he's "back" and "stable" for now ... please send positive vibes"
They've intubated and sedated him. Will post more when I hear Thank you in advance for your prayers.
UPDATE:
Niece just posted a vid. He is not getting enough oxygen and he has a blood infection, possibly septicemia. They are still working on him, they may have to transfer him to Boston Children's

[Katrina]

Update: So, this is what they're saying he has, and hoping it's not the "HUS" type ...
pediatrics.aappublications.org
Streptococcus pneumoniae–Associated Hemolytic Uremic Syndrome: Classification and the Emergence of Serotype 19A
Streptococcus pneumoniae –associated… She has gone on to say the doctor is worried , he may not survive this. Thank you all for your prayers and support. I will keep updating as I hear from my niece.

[Katrina]

I am sorry to report my grand nephew has passed. Thank yo all for your prayers

[eagle326]

So sorry to hear Katrina. Thoughts and prayers for you and his parents and all other family members. I really thought he was winning the battle. Cannot imagine out living my children let alone losing them to this.
May all of you stay strong and know that we are all here to help in anyway we can.

Eagle


Run Low Drive On

[Katrina]

Thank you eagle it is very much appreciated.

[bacpacker]

Oh Katrina I am so sorry to hear this. I too thought he was on a major upswing. He had gone thru so much.

My Prayers are with you all you guys.

[Katrina]

BP, Thank you. I know they appreciate everyone that was pulling for him. I believe the infection in his blood was just too much for him to combat. I talked to my sister (the grandmom) and she is still trying to get thru to her daughter. She's not sure if they've turned their phones off or the people calling them are clogging up the lines.Thank you guys again.

[Katrina]

We're back from the Memorial/Celebration of my grand nephews life. My niece and nephew want to say thank you to all of you for your support and prayers during that time. It really meant a lot to them. The urn she had done was just so beautiful. A friend of hers painted the resin urn and it looked wonderful. My niece sent a picture of the finished urn to the company that made it, they were very impressed, so her friend has gotten a couple of commissions from the company to paint other urns for them. Another friend had pieces of jewelry made from some of his ashes for all three of them as well. We met so many of the people from their little town.They were all very nice and friendly and very supportive. Nephews boss, shut the hardware store down for the few hours of the Celebration, so he and nephews co workers could be there. I'm so glad there are towns still out there that rally behind one another.
My poor sister on the way up from VA got hit by some jerk in NY, so she now has to have the car fixed. Seems the idiot was too impatient and tried to pass them and a couple of semis while it was raining really hard, she said they were all creeping along when that jerk tried to pass them.. He side swiped them, took out part of her left front wheel well, caromed off one of the semis and rolled himself a few times and landed in the median. I'm just glad they weren't hurt but it took a few hours to be able to continue on their way. We were really worried when she hadn't shown up to the place we were staying in. She was about a couple of hours ahead of DH and I and she expected to be to the hotel before us. Just what my sister needed. The officers and the semi drivers all said the same thing in the police report, that jerk caused the accident. Just hope her insurance company takes care of the repairs and won't give her too much trouble as the accident happened out of state.