Friday, February 24, 2012


So week one of having two babies on Hemo is nearly done and I realize that most of you probably have no idea what that actually means! So I thought I'd try to explain it, at least briefly so you know what our life involves at the moment!

As you know, your kidneys both remove water and remove wastes from your blood. Without kidneys, toxins build up in your body and water builds up. When I was talking to my students about this, one girl asked if I thought my daughter felt bloated most of the time which was a pretty good question! So yeah without kidneys you just live constantly bloated! The beauty (and at the same time frustration) of peritoneal dialysis (their old home machines) was that they are on it most of the time- about 17 hours a day (pre hernia anyway- it was 21 hours after!). And so it ends up being closer to having a kidney because there isn't as much of a chance for water or waste to build up. Peritoneal dialysis (or PD, as we call it) slowly and gradually pulls using water in the abdomen and osmosis slowly pulling things out so it is a pretty gentle treatment.

Hemodialysis is a totally different approach. In hemodialysis, you build up water and toxins in between treatments- so if you go back to back, you have like 22 hours of build up and then if you have a day off, like Addie did yesterday, you have more like 46 hours off and then if you end up with two days off like we trailed with Addie last weekend, you actually have 60 hours of toxins and fluid build up. Then you go onto a machine. And what is so 'risky' regarding Hemodialysis is that you actually connect directly to your bloodstream and pull out a decent percent of your blood and cleanse it and then you just keep circulating your blood through this machine. So at any time during the approximately three hour treatment, you have a significant amount of your blood in a machine rather than in your body.

By directly filtering the blood, Hemo is fast! In three hours, you leave free of all those wastes and fluid build up and clean enough that you can go many hours before needing it again. So you are looking at like 15 hours total of dialysis a week instead of 120 hours a week on PD. So the sheer Math of it really favors Hemo! The problem is probably self evident from my description- blood is really better off staying IN your body! Particularly on a baby who just doesn't have that much blood. Having blood outside the body introduces risks of blood pressure swings (Addie's favorite Hemo trick- her blood pressure can vary from like 60/30 to 170/110 even with a single treatment!), blood loss (one time the machine backed up and about a 100mL (appr 3oz) of Addie's blood poured onto the floor), blood infection, seizures etcetera. So the risks are pretty enormous! It's also a very intense three hours because while they had a 6ft leash to their PD machines, you have about one foot to the machine for Hemo and that one foot is the catheter full of your blood circulating so not moving is pretty serious business. Because of Max's motor problems, he will lie still so that is less of a risk for him. For Addie, she absolutely will not lie down so she has to sit still and play with her toys without crawling or pulling up on the bed FOR THREE HOURS! And every fifteen minutes, they must get a blood pressure which sends Addie into a tizzy of baby rage. Needless to say, it is a very long three hours!!!
Despite her drama queen antics (which were, btw, particularly out of control on Monday as if she sensed Max was in the OR soaking up all our attention!) and the problems we've had with blood pressure and the one incident of blood loss and the one blood transfusion, Hemo has actually been pretty successful for Addie. With Max, we were more concerned because it's harder to predict whether he will struggle with seizures when his brain is compromised. Additionally, Max has his turning blue trick still and we are now starting to piece together that his neurological condition probably contributes to that as well. The doctors biggest concern is that he will clamp down and shut off his airway during Hemo. He does that with some regularity and is usually able to come back on his own and only sporadically (every couple of weeks) requires 'bagging' (basically CPR with medical equipment) to get him back to breathing. But the fear is that if he were to do it while having a significant blood volume outside of his body and in a machine that is not intended to deal with significant heart rate drops, it could make recovery much more difficult. We were told to be prepared for some serious drama to go down if that were happened and talked through all kinds of interventions from chest compressions to emergency intubation etcetera.

Thankfully two Hemo sessions in and this has not occurred. We are really relieved to see that his brain has coped really well with Hemo- his blood pressures have been nice and consistent and free of the swings Addie shows. He has shown no seizure like activity and seemed alert and stable during the treatments. So we feel better that Hemo doesn't seem too stressful for him at base case. The airway issue is more difficult because he could go 10 treatments without an episode and then clamp down on treatment 11 and drama unfold. So we will have to pray our way through each and every treatment and never become overconfident or stop being vigilant about that. And in 6 weeks when he is healed, we will very happily return to peritoneal dialysis for Max!

Also and it's early to tell but so far- we are loving life with the g tube and fundo. Max's horrible reflux cough has been gone and he seems so much happier. Of course he is getting some mighty nice meds so of course that's not necessarily all related to the reduced reflux but we are optimistic that Max will be happier and more comfortable and back to enjoying life in no time.

I mentioned on Facebook that now Addie will have surgery on Monday. She really needs a g tube as well- the direct feeding tube to her stomach. Partly because she still won't eat normally, although we're hopeful that will change in the months following transplant. But more significantly we want it for immune suppressant drugs. Addie is a spitter and even if we get her back to eating all her food on her own- our realistic goal- we don't want to risk her spitting out those life saving important medications or refusing to eat them. So now we will be able to give her those direct to her stomach. Our transplant surgeon here said 'you want my opinion? Leave it in until she gets married and I'm only half joking'! Older kids and teenagers are notoriously bad about taking their medications and can lose their transplants over it so there is an argument for continuing to give them via her g tube long term. We will just have to wait and see on that but for now anyway we will be using that. She is also having her old PD catheter that she is no longer using removed. Which is actually a pretty scary but exciting step because it means we are officially saying goodbye to PD for Addie. With our transplant planned for May, it seems best to leave her on Hemo until then. So Monday's surgery is really an important and therefore exciting step towards transplant. We are still dreading it because surgery sucks and it's hard with babies who don't understand why they left feeling great and came back feeling awful. But once we get through the other side of next week, we'll have made some great progress for both babies and be feeling very happy about that!

I don't know how long we'll be here. Addie should get released Tuesday or Wednesday. Not sure when they'll release Max. The ICU will surely grow weary of a healthy baby lying in there just in case he turns blue so I imagine if he's still doing well mid next week when Addie goes home, they might start talking about letting him come home to. We can't wait to be back at home all together!

Thanks so much for all the prayers and support. We have felt very loved and cared for this week and really appreciate all of you!

And pictures of each baby getting Hemo...

Addie waving at everyone who walks by during Hemo- the reddish brown lines from her bed to her machine are her blood going into the machine.

This is how Addie passes her time- playing with all her toys!

Addie really enjoys eating her blood pressure cuff- medical supplies make the best chew toys!

See, here is where my blood is!!! (and no she is not allowed to play with her blood lines! I just couldn't resist getting a picture of it telling her no, haha!)

Max's chillaxed approach to Hemo

Hemo with Max- notice the absence of crazy drama we'd feared!

You can see his blood lines coming from his chest in this picture...

Here's a close up of our handome little man- he is still a little loopy from the drugs but feeling pretty good!

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