Tales of the Toot

'Cuz special needs kids need special mamas!

12/8/08 Updates December 6, 2008

Filed under: AHUS,Atypical HUS,kidney failure in children — christycross77 @ 1:39 pm

It’s been a looong week. David was gone Monday till late yesterday (Friday) back home to work and boy did we miss him. He is back with us until Sunday afternoon and then has to go back home to work 4 days. I got a great night’s rest last night, after putting Daddy on duty!

We have been on the regular pediatric floor since Tuesday and let me tell you it is an adjustment! We cannot say enough wonderful things about the ICU staff here at Medical City Children’s Hospital and maybe we are just spoiled to them. We’ve had a few issues since being on this floor but I think they are worked out now. Some of the staff doesn’t seem to understand how serious it is that Aiden’s central line lumens have 5000:1 Heparin in them…translation…DO NOT FLUSH THE LINES!! Always pull back and waste your Heparin before you do anything else. I have been standing over Aiden like a mean guard dog to keep him safe but I think they get the point now. We also had a issue with his dialysis catheter the first night we were here. My little monkey apparently stepped on it pulling it loose from one of the connectors that hooks him up to his peritoneal dialysis machine. Poor little toot looked at me and threw his hands up like “what happened” …and there he sat in his crib with dialysis fluid just pouring out onto the bed and his supposedly sterile line wide open…It was almost comical. I called for the nurses and they freaked out. They knew NOTHING about his pd catheter, the machine or even WHO to call or where to find hemostats to clamp this line so at least it’s not OPEN to whatever germ wants to crawl in there! I took it upon myself to call down to the PICU and explained to the charge nurse what happened and he was here PRONTO and had the PICU dr. on standby in case we needed him. Thanks Sean! You rock! Again, this was the first night on this unit so it did not leave me with a lot of confidence as to who was taking care of my little toot. You can imagine what happened next, lots of apologizing and it wont happen again stuff…….it took me a few days to get over this but everything looks good with Aiden’s catheter and we are infection free at this point so I’m thankful for that. Debbie and the rest of the dialysis staff have started training me on the dialysis machine and made sure from then on that I had the supplies I needed should that happen again. And the pedi manager has made an effort to give us more seasoned nurses to care for Aiden. There are some really good nurses on this floor so I’m not trying to bash them or the hospital but geez! Okay, enough hospital drama and on to the actual updates..

Aiden had plasma apharesis 5 times this week and has now met the 10 treatment benchmark where we expect to have seen improvement, but sadly there has been none. Our hope was the plasma apharesis would work and we wouldn’t have to have dialysis. But as it stands now we are doing dialysis every night for 12 hours. Even though the apharesis does not seem to be working, current research says that we should continue doing it until our more specific test results come back. These are the tests we are waiting on from University of Iowa. Dr. Quan found out this week that the earliest we can expect the results is the 2 month mark, possibly as long as 3 months. It is his plan to continue to give Aiden apharesis while we wait.

At this point we don’t know how many times per week we will be doing pharesis. I guess it’s kind of hard to guage without signs of progress. We did apharesis 5 times this week and are bumping down to 4 times next week. I’m unsure after that.

Sometime early-mid next week we will be transferred to Children’s Medical Center of Dallas www.childrens.com (currently we are at Medical City Children’s) . They are the government approved training hospital for home dialysis in this area. They will train me on peritoneal dialysis, the machine that does it, etc for 2 weeks to prepare us to manage Aiden’s dialysis from home. Aiden will continue his apharesis there. After my training is complete we won’t need to be at the hospital except for apharesis as long as Aiden remains stable but will still need pharesis. The question then will be how often do we do apharesis? If they think we will continue to need it 3-4 times per week then we will probably stay somewhere like the Ronald McDonald house and just check in to the hospital as a day-patient on the days we need pharesis. If it is less than that then we will come home and just drive back and forth to Dallas.

Dr. Quan and David and I, don’t want Aiden to be in a “hospital” environment any more than we have to. We would love to be somewhere more home-like, especially for Christmas. My only concern there is Aiden’s blood count. At this point his H/H (hemoglobin & hematocrit) are dropping every few days and he is having to get blood transfusions. The nurse is on her way in here now to start one for today.

I’m hoping that the weekend is good! We aren’t doing apharesis again until Monday, so once we get past this four-hour transfusion Aiden won’t be hooked up to anything except dialysis at night! So he can have lots of playtime! 🙂

He continues to be such a trooper and for the most part stays in a good mood and just goes with the flow. He is awesome!

Thanks to everyone who have sent us messages, food, gifts, etc. We appreciate it and it brightens our day to hear from y’all. Thanks so much to Melissa for letting me borrow her laptop! It’s much easier to update from here rather than the Blackberry.

Please keep us in your prayers. I will update as often as I can.

Love y’all,
Christy, David & Toot

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