not quite a hippie...but different.

Well, finally, on Thursday, we had  a great day.  Wednesday was looking up, Ridge made it a little over 24 hours without getting blood.  But that night, he had to get a transfusion.  Thursday, he stayed at his post transfusion hemoglobin level of around 13.4 all day long.  This morning, and this afternoon, he was still around that-- 13.2, actually.  

So we begin tapering the steroid dose tomorrow. The last phase of the taper will be oral steroids, and those are easy to go home on. So word on the street is we'll be home Sunday or Monday, if nothing weird happens.

Thank the Lord!  We are ready to be home.  I'm getting used to being at the hospital, and that's just not normal!

Ridge has been having some heart rate issues- he's been running too low.  I've watched him as he's napping this time and things have been much more normal. Weird.  Thankful for that!  He had an EKG this morning, no results yet. Consensus is, until we see EKG results, that it is either related to some sort of interaction of the meds he's on or it could be a positional issue with his central line.  Interesting to note, we de-accessed the port today, so maybe it had something to do with that. I just thought of that. Weird.  As a matter of fact, that is very strange coincidence.....hmmmm....We are going to reaccess it in a bit, so we'll see what happens then.  If it is an issue with his central line, we may have to do nothing, or we may have to pull it out a bit, or we may have to get it replaced. I'm trying to find images of a Broviac Catheter, which is what Ridge's central line is, but I don't want to post pictures of someone else's kid so you can google it yourself if you want.  Anyway, it wouldn't be a small feat to repare/replace this.  He had it replaced once before, but the surgeons took out the one he had, put a new one in the other side of his chest...this time, we don't HAVE another side of his chest to work with, bc the port is there. So we'd take this one out and put a new one in the same place. But I'm wasting time typing about it, because THAT is not happening, bc we are sure things are fine.  So pray that we are right about that :)

I have been sporadically typing this, and my brain is kind of elsewhere now.  But Ridge is much better.  That's the jist of it all.  He is starving bc of all the steroids he is on, and he is eating very well. He is moving on up past the baby food and to the table food, and we are figuring out what kind of milk he's gonna get...I'm still feeding him some, but he isn't very nice about it and he has six teeth and he's not as appreciative and friendly as one should be to their source of nutrition.  So I'm still giving him bottles of breastmilk but we are figuring something else out to give alongside it.  He has had some problems with pediasure, I am pretty sure bc it contains dairy.  So our other options have been: try whole milk, try toddler formula, then try toddler soy formula.  Well, trying dairy is tough because it upsets his stomach and no one gets any sleep at night.  So whole milk and toddler formula are not what we really want to try.  Soy formula is definitely an option, but formula is kind of expensive and Sawyer never had any and I would rather not give Ridge any if I don't have to (not knocking ya if you use it, do whatever you want-- this is just my preference).  SO....since he is old enough to drink things other than formula or breastmilk, we've made a decision.  A decision that is a bit unconventional and a decision that really wasn't given as an option in our dr. consults.  But it won't hurt him, so we're doing it anyway.  I have a friend, a couple years younger than me, who reads this blog, and who is a nurse pracitioner....and who is quite the momma.  You can read about her cutie pies here.  Anyway, after reading her blog all this time we've been in the hospital, I was exposed to the idea of....goat milk.  I know, it's not THAT far fetched, but some of you are probably gagging.  I just feel better about giving my kid an actual mammal's milk than something synthetic, if we can.  Goat milk is comparable in some ways to breastmilk, and it is easier to digest than cow's milk, and while I didn't taste it, BDawg did, and he said it just tastes kind of like milk.  Ridge didn't need any transition- I didn't have to mix part goat milk part breastmilk or anything...he just took it and loved it.  And slept better that night.  So we're rolling with it.  He's had no stomach aches so far from it, and we did buy the kind fortified with folic acid, bc goat milk IS lacking in that department.  It's not so weird that you can't buy it at Wal-Mart.  So while it is maybe a tad unconventional, I feel much better giving that to my one year old than giving him toddler formula.  Maybe that's just me, but that's how I feel, and I like being able to make those decisions.  If he doesn't grow soon, maybe we will revisit the idea of a more "complete nutrition" like pediasure...but I don't think it's gonna be an issue.  He loves to eat. He's gonna grow.  And the boy likes goat milk.  It's not as cheap as cow milk, but not too pricey, IMO, considering we buy organic cow milk anyway.  I figure it will cost us about $1-$2 per day.  But I might be wrong.  We will see!

So there's something for you to think about. :)

Thanks so much for all the prayers. No doubt we've needed them, and no doubt we've felt them.  I know they have been in abundance, and we ask you to pray as we begin tapering the steroids that Ridge would respond well and not become dependent upon them.  We are ready for this bleed to be totally behind us, and to have some good breaks between this one and the next one-- how about...like...a PERMANENT break from bleeds...that's what we want.  No more vaccinations for this baby, that's for sure!  With every day, I feel a little bit more like a hippie, or something earthy....breastfeeding him still, giving him goat milk, no vaccines, homeschooling Sawyer (possibly/probably/we don't know), yeah yeah yeah.  And it feels good.