Quick Update-1/28/15

Its been almost three weeks since I have updated everyone, so I figure it was about time to do so.

We started at home infusions about two weeks ago. Jordan now has SubQ infusions done at home, once a week. He is on Hizentra, 50 grams (50 ml is the dose rate). First two infusions, we have had a nurse come from Walgreens Infusion Services. She trained me on the first week, last week I did everything by myself in front of her, I will do the same this week, and then Jordan and I will be on our own from here on out. Its been a hard routine to get use to, Jordan doesn't like being poked at every week, and there are three sites I have to poke in his stomach. Infusion takes a little over an hour, and we premedicate him with Benadryl and Tylenol about 45 mins before the infusion. After the infusion is done, he takes a good 4 hour nap afterwards, which has been hard on his sleep schedule.

I figure it will take some time getting use to, as it did last year when he and I were doing his PICC line dressing changes every week. As you guys know, that was a stressful routine also to get use to, started off that it would take us almost an hour to do, by the time we had it removed, Jordan and I had it down to a 20 min window of changing his dressing change. So my hopes are that this new routine of doing SubQ infusions at home will be the same situation. Just patience and time to get use to it. I am hoping eventually I can get him to muster up the courage to do these pokes himself, as this is something he will be doing for the rest of his life...and well, I can't exactly go with him to college to do it myself! 

Also got to see our favorite nurse last week, its been three months since we have seen her. Between Jordan doing chemo throughout the month of October and November, then the traveling to Chapel Hill and the holidays, plus switching insurance companies in December, we had to wait before we could see her again. She has been our nurse for almost a year now and we adore her. She came by to draw blood and take vitals, we are on orders right now to do a CBC every other week, as we start the process of weaning Jordan off of steroids. Also Jordan has to have his IGG levels checked to make sure the infusions we are doing at home, are working, and that he is getting the correct amount of the IVIG. Last week's counts, I will post below, they dipped a little from the January 7th appointment in Chapel Hill, but his Neutrophils look good, so the hematologist team aren't worried. But those of us that have been dealing with this disease for years, any dip, worries us. But, thankfully, for the meantime, his counts are in normal range, so we take that as a blessing right now.

Other than that, everything is going good here. Jordan just started his second semester of his freshman year, which means four new classes, which he was excited about. He passed his first semester classes with two A's and two B's, which makes me so proud; especially since the 504 team wanted Jordan to drop two of his classes, and only take a half day of school the first semester (because he had missed so much school due to low platelets). But, like I told them, he will do the work, he will bust his ass to get caught up, and guess what, I was right. :) 

Jordan is doing great, a little worn down more so than usual, but thats from the infusions, which takes a few weeks before his system gets use to it, and builds up the antibodies that he needs again. So we just let him sleep as much as he feels he needs. Right now he has swimmers ear (took him to the doctor this morning, since he was complaining of an earache-only him would get swimmers ear in the middle of winter-LOL), so he is upstairs sleeping, and back to school tomorrow he will go. 

Hopefully we have a quiet year, opposed to last year. Nothing ever surprises me with Jordan though, he keeps me on my toes medically and emotionally. But like someone once told me when I was complaining on how overwhelmed I always am with Jordan. God wouldn't have entrusted Jordan into my hands if he didn't think I couldn't handle it. Special boy for a special mom. :) Who knew almost 15 years ago, becoming a teen mom, again, for the second time, he would make me grow up so fast. Unfortunately he has had do to the same. But I wouldn't ever trade the fact that I am his mom.

We did receive upsetting news in the ES community, online last week. We lost two wonderful women that had been having complications in the hospital for quite some time. It was heartbreaking and gave me a heavy heart, as this was a reminder that tomorrow is never promised, especially with this disease. They both were wonderful for me when Jordan was first diagnosed with Evans Syndrome in 2013, always willing to message me and answer all and any questions I may have had when pertaining to Jordan. So to them, Shannon and Stefanie...fly high our ES angels, and may you now rest in peace.

Here are Jordan's current counts (they are also on the side for those reading this on a computer).

Platelets: 218,000

Hemoglobin: 13.6

Again, his platelets are in normal range (145-450), his hemoglobin is border-lined low (anything above 14 is normal), so not too concerned (yet); as always we keep an eye for any low blood counts. 

We will do another CBC on February 4th, I will update after that on his counts. As always thoughts and prayers.