Ian hospitalized

Ian has been in the hospital (CHOC) since saturday. Initially it was because he ran a fever, and having had a BMT that means a 48-hour stay in the hospital, to make sure it's not an HLH flare-up.

But he has been worsening the past couple of days, and now has the beginnings of pneumonia in both of his lungs...i'm so worried...Ginger is so scared.

Head over to the blog to get updates...and please pray that he gets through this quickly...

transplant day -3

support the adams

tomorrow...

Ian goes into the hospital indefinitely to begin treatment in preparation for his bone marrow transplant. Read Ginger's write-up of their last appointment...here
A few pictures i took of Ian't last evening home...

reading a book with Dada

finding mama's eyes and mouth (quite accurately, as you see)

final family dinner

and last bath with the brother!

please pray for Ian's strength and health, and for the family in the coming weeks...

NEWS!

This from Ginger!
“I am so happy and blessed to say that we heard today that Caid is a MATCH for Ian as a bone marrow donor!!! Praise God for this answered prayer! This is the best news I have had in a long time! Thank you to everyone for praying for this! May I humbly ask for continued prayer on the remaining gene test that we are waiting on this week? We want a mutation identified so we can know about Henry. Love to all of you.”

Ian, Caid, Henry

waiting...

Still no word on HLA typing results for Caid. They said maybe tomorrow. Please say your prayers again tonight for Caid to be a match for Ian.   ~Ginger

support the adams 

thingz

Chad and i have been making lots of terrariums...it started out as his Valentine's day surprise project for me :) i was already kind of obsessed before that...but now i'm TRULY obsessed. Like, buying books and constantly looking for new materials. At this point we're just experimenting for possible wedding centerpieces and also because they're super fun to make. We'll see if what we're doing is working!

Still sick...still. Just, exhaustion, dizziness, nausea...it's been weeks now. It's certainly the epstein-barr...i just don't feel like going to the doctor and getting poked with needles and paying lab fees to have them just tell me what i already know. :[

We've all been enjoying time with the boys...Ian is doing a lot better as far as his ability to move around, so that's been wonderful. I was looking at some pictures and videos i took of him before they left for arizona for christmas, and he looks like a completely different baby...not swollen, not pale, and head just brimming with long blond waves. Sweet babe...

Caid went in for bloodwork yesterday to begin to determine his eligibility to be Ian's bone marrow donor.

i miss painting so much that it's kind of aching in me. i think--i think--i have a pretty rad idea for a figure series. And it's nagging me to get started...but where, how, etc...is a mystery to me.

Gift Of Life

A little time, a little money...I found a way to spare both in the hopes i can save someone's life. 
i wish i could be the match for Ian, but someone else might be!

visit marrow.org and just take one minute to see how every single person adds to the possibility of hope. what an AMAZING time we live in that this is an option we have!!

I'm inspired by my darling Ian, and sweet Gwen; and the pure gift of what a healthy life is.

 i joined...maybe in 30 days, or 30 years from now i help give that gift. 

Please consider for yourself!

latest from Ginger...

“Had a very nice weekend seeing Joey and Caid (and Henry) thanks to my mom and dad who both stayed a night with Ian in the hospital so we could spend some time together. We also got a visits from Grammy Wren & Colleen, Auntie Trisha & Micaela and Auntie Julie and Uncle Joel.

We never really made it out if ICU. After spending a few hours on the hematology/oncology floor, they decided that Ian was working a little harder at breathing than they were comfortable with, so we got moved back to ICU. They have planned to transfer us a couple of times since then, but it hasn’t happened yet. He had an assessment from a therapist for feeding on Friday that he didn’t really pass, so he was restricted to 1 ounce of baby food twice a day for practice and no liquids or solids. He was assessed again this morning, and continued to have a bit of trouble, so they will do a swallow study tomorrow to get a bit more information. The swallow study involves drinking barium and watching with an X-ray to make sure he doesn’t aspirate anything while swallowing. This is apparently a typical side effect from being intubated for such a long time and just being overall weak from being so sick, as Ian was.

Unfortunately, it looks like we will be here a bit longer than I had been thinking and hoping for as of last week. He is continuing to get stronger every day, we are working hard at playing to try to get strength, stamina and coordination back.”

latest from Ginger...

"Everything still okay; however, since coming off of the ECMO, Ian has had trouble maintaining his temperature and has had the low heartrate. Although his heart function has continued to improve, his heartrate stays low and that and the body temperature don't really make any sense to doctors or "fit" with other things going on. 
It cannot be attributed to any of the drugs that he is on and they have pretty much checked everything they can at this point. The doctors from the beginning could not really understand why he had respiratory failure, since his lungs were sick, but never looked bad enough in the chest x-rays to have needed life support like ECMO for the lungs.

I asked if the weird bloodwork -specifically the low hemoglobin (which is the red bloodcells that transport oxygen) could have explained his trouble saturating, but doctors have since given him many blood transfusions of hemoglobin and bloodwork has had normal counts for a while now. Yet he still needs a lot of support from the ventilator and didn't tolerate much weaning of the oxygen settings yesterday.

Doctors here are very honest in that they may not have any answers for this, since they have checked on almost every possible explanation. They plan today to check his adrenal function, since one number on his thyroid function was slightly low today, when it was previously normal. They said this often can happen with very sick kids, which is what Ian is, but would investigate it anyway just to see if it yields anything. At this point the Endocrinologist is the only specialist who hasn't been consulted on Ian's case.

Please pray for either a mysterious improvement or answers (less likely) for the doctors, so they can help him improve. The important thing is that he is still stable on the ventilator."

Ian's Progress

Ginger posted this about an hour ago...

Lots of progress since I last posted. Ian had an echocardiogram yesterday and the cardiologist was very pleased. His heart is functioning much better now. He also had an MRI and a spinal tap to look for any Central Nervous System evidence of HLH. The doctor said those may not show anything, since he has been on the treatment for several days now, but ordered them anyway in case they may be helpful. For the spinal tap, they gave extra sedation and pain medication for, so he didn't even wake up for it, which was a huge relief for me. We will hopefully have the results of those tomorrow morning. 
I was able to talk to the hematologist about some questions I had regarding the bone marrow transplant process. They are running the genetic test on Ian (which takes 3-4 weeks for results) to determine if they can find the mutation for HLH on the genes that they currently know about. This test is extremely expensive, which is why they are not running the test on the rest of our family. If they can identify the gene (best case scenario, as opposed to it coming back normal, which can mean that the mutation is on a gene that they haven't identified yet) then they can run a single gene test on Caid and Henry to see if they have the mutation or not. The best case scenario then would be that neither Caid or Henry have the mutation AND one of them is a bone marrow match. Siblings have the best chance of being a match, since they have the DNA from the same two people as Ian (parents!) as opposed to Joey or I, which only share half our DNA with Ian. However, if Caid or Henry have the mutation too, their bone marrow would be equally faulty and they would need a transplant too. Also, if Ian has the mutation on a gene that hasn't been identified, then it would not be identifiable on Caid or Henry which would leave us to a scary waiting game to find out if they have this same syndrome which could and would eventually be triggered by a virus. 

So, this is what we need prayer for:
1) Gene mutation for Ian's HLH identified
2) Caid and Henry don't have HLH
3) Caid or Henry are a match for Ian
4) Bone marrow transplant takes and is successful