Gracie Facie

Grace was discharged from Children’s Hospital last night and was very happy to sleep in her own bed, but happier not to wake up with a blood draw from her arm.  Her dialysis is going fine and she’s feeling much better now that some of her lab values have returned to normal.  If it gets to be too long between dialysis sessions, she begins to feel pretty sleepy and nauseous.  She’s had almost all of her dialysis sessions during the day for our training, but now we need to switch her to nighttime treatments.  The supplies needed for this are extensive, so Todd and I have much organizing to do, and we’ll do our best to keep Grace’s room from looking like a hospital. 

So things seem to be returning to normal, or an altered version of what used to be normal at least.  Grace’s spirits were pretty low after a few days in the hospital, but she seems much happier now that she’s home. 

Grace’s doctors plan on the next few months being a normalizing period where she can get into a daily routine and become as healthy as she can be.  It won’t be long before we can begin typing/cross-matching people for kidney donation.  Many people have asked about that, and the first requirement is to have a matching blood type.  Grace is O+ and so am I.  It’s a very common type, so finding a match that way shouldn’t be too difficult.  The next step is to see how many of the 6 HLA markers match (kids recieve 3 from each parent), and the last step is to do tissue compatibility/cross-matching.  All this test involves is to mix Grace’s blood with the possible donor’s blood and watch for a reaction.  This is all a few months away, but I hope I’ve answered at least a few questions. 

Thank you to everyone who has helped with caring for our girls while we were consumed with everything.  Thank you also for all the gifts, calls, prayers, etc. we have gotten from so many of you. 

Angie

So Grace is being admitted to Children’s Hospital of WI today to begin dialysis.  Her Nephrologist says she really, really needs it but wanted to try and give her catheter more time to heal.  It’s still a bit leaky around the incision site, so that’s why she’ll be admitted for treatment.  Usually she would get the peritoneal dialysis for 10-12 hours/night at home.  This is where a large volume of fluid is put into her belly, allowed to sit for a while to absorb the waste, and then drained out.  That cycle will eventually happen 4x’s/night.  However, because her catheter site isn’t yet fully sealed up, she will get a low volume of fluid cycling 24 hours/day and watched very closely in the hospital because infection is a big risk at this time. 

Due to the whole H1N1 thing, visitors are limited at the hospital.  I have to pick a list of only 4 people other than Todd and myself that will be allowed to see her for the duration of her stay.  I’ll try and get my hands on a computer with internet access and keep everyone updatedm but if not,  I may or may not get to see my emails, but I’ll keep my phone with me.  Todd and a few other family members will be switching off staying with her while we juggle our other daughters, work, and dialysis training next week. 

Thanks again for everyone’s overwhelming support.  I think the twins will have much fun next week with all the friends and family who are going to spend time with them.  It will hopefully be an adventure in their eyes.  I’m sure Grace will be pretty bored and the hospital food is kind of icky.  Please feel free to call her – I’m sure it will break up the time and keep her mind off of other things. 

Love, Angie

Hi Everybody,

This post will be brief because I have to run off to my last Psych nursing clinical….finally.   Anyway, Grace had her peritoneal dialysis catheter placed yesterday and is feeling ok at home.  It’s difficult to convince her that meds will help with the pain, but when she accepts them she does feel better.  Christmas came early for her and we broke down and got a Nintendo DS and 2 games for her (even though I said she would never have a video game) – but it keeps her mind off of things for a while. 

As for her renal failure, it’s progressing rapidly.  When your kidneys are really bad, you loose a lot of your body’s protein through your urine and this causes fluid imbalances.  The protein is necessary in your blood to keep the fluid in the blood where it belongs.  However, in Grace’s case the protein is being dumped instead of retained in her blood, so she is accumulating a lot of fluid in her belly.  The dialysis nurse today attached a drainage bag to the end of her catheter/tube in hopes that the excess  fluid drains through it instead of around it.  Too much belly pressure and leakage will not allow her abdominal catheter site to heal and we’ll need to temporarily do hemodialysis (thru a port in her arm).  HOPEFULLY, the draining of her belly will do the trick.   

Thanks again for everyone’s thoughts, prayers, wishes, and help.  It is a big, big comfort to me knowing that we are not alone and everyone is so willing to do so much.  I’ll keep everyone posted, but it seems that one way or another Grace will be on dialysis by Thanksgiving week.  Ugh.

Love, Angie

Last Sunday, Grace was admitted to Children’s Hospital of WI with H1N1.  Most people with the illness don’t warrant a hospital stay, but due to the delicate state of her kidneys, her body was unable to tolerate it on its own.  Most people don’t realize that the kidneys regulate much of the balance in the body and without them things go haywire.  After 4 days, her vital signs were once again stable, although we still need to monitor her pretty closely at home and her medications are now numerous. 

Her kidneys, however, are done and she will need to be on dialysis within about 2 weeks.  Her surgery to place the peritoneal catheter (tube put into her belly) is scheduled for Monday and she will most likely begin peritoneal dialysis the week of Thanksgiving.  We chose this type instead of hemodialysis (port in the arm) because we can do it at home while Gracie sleeps.  Her nephrologist did change her opinion about waiting on a transplant recently.  She suggests we get the dialysis going because in and of itself it’s a huge undertaking, but soon we can begin the process of donor matching.

The thing I have to be surprisingly thankful for is that I was just told that my sister, Cici, currently serving in Iraq, is now in Kuwait waiting to get on a plane to come HOME to her family in DC   This was completely unexpected because she was scheduled to be there for a few more months.   She will be home in a matter of a few days.  If anything could make me feel happy at this time – this was the one thing that could do it. 

Thank you from the bottom of my heart to ALL of our family, friends, neighbors, co-workers, tachers, and classmates who have offered to help in so many ways - some have even offered a kidney   Just knowing that we have so many people who care so much about our family is getting us (me especially) through this awful thing.  Grace knows she is loved and I’m so very thankful for that. 

I will continue to try and think of ways for people to help – there have been so many offers from so many different directions it is incredible to me and I am overwhelmed by it (in a good way).  Thankyou so so so much.

Love,  Angie