And...we're back! :(

Dr Miller

Well, it seems to be that the only time I have to update my blog is when I am sitting at Seattle Children's Hospital watching my precious baby girl sleep.  Yep, we're back... in the hospital again.  I really should know by now that when we make a "quick trip" to the ER I might as well pack a toothbrush and pair of pajamas just in case.
We had such a fun weekend last weekend.  We went to stay at our good friends house with two other families for the 4th of July.  There were 6 adults and 7 kids.  We were outnumbered and we had so much fun.  On our way home on Saturday we stopped by Lake Kachees and threw rocks in the water for a few hours.  It was such a great weekend.
Then at 3am on Sunday morning McKinley woke up uncomfortable.  Her pain got increasingly worse and at 4:30am she started throwing up.  She had a fever and was complaining of severe abdominal pain. We called our pediatrician and he recommended we take her to the ER.  So, off we went. After 5hrs in the ER they diagnosed her with a UTI and sent her home with some antibiotics.  But the pain wouldn't go away.  By 7pm that night she was in excruciating pain and had a 106.3 temp.  Talk about being freaked out! We stripped her down, jumped in the car and rushed to the hospital, getting puked on the whole way there. The ER Dr's sprung into action once they saw us and that began some of the most difficult days we've seen McKinley have.  The Dr's decided that she had a kidney infection which for McKinley, with only having one kidney and the one she does have is multicystic dysplastic, this was really not good.  I was doing ok until I heard a Dr describe her as critically ill and decided to have the Risk nurse from the ICU check on her for 3 nights straight.  That might have been the beginning of my breaking point.  For days her fever would spike to 105 and we would pack her in ice.  She was on a constant regime of Tylenol and Oxycodone to try to control her fevers and her pain.  Her IV's wouldn't stay in but her IV antibiotics were crucial so she would get poked over and over again for hours, and for some reason always at like, 2 in the morning.  Her veins are all pretty much worthless right now, they've all been poked too much.
Being in the hospital with an almost 3 year old is way different from being in the hospital with a 6 month old, or even a 2 year old.  She is so aware of what is going on around her. She is very cautious around the Dr's, or anyone wearing blue gloves and tends to not tell them how she really feels because she's afraid they're going to hurt her if she does.  She communicates so well how she is feeling and what hurts, and it breaks your heart when you can't fix it.
We were admitted Sunday night (Monday morning) and not until today (Friday) have we begun to see the light at the end of the tunnel.  She hasn't had a fever for 36 hours and her pain seems to be subsiding.
What is still unknown is how much damage has this done to her kidney. How likely is this to happen again?  Is this the beginning of her kidney failing and are we going to be looking at a transplant sooner than we had hoped?  All of these questions scare me, and probably can't totally be answered by the Dr's.  We have had such an incredible past year, to the point where I had almost forgotten McKinley was sick at all.  I don't like being reminded that she is sick.
As always our INCREDIBLE friends and family have stepped up to care for us while we have unexpectedly checked into hotel Children's.  Katie has organized meals, Jenn had brought us food and shampoo (this was a crucial need for me by day 4!), Alison & Matt brought the most awesome goody bag of treats, Kristin and Sue have brought us amazing meals, Cerissa & Beau, Jenn & Stephen, Mike & Sue, Nana & Papa, Heather and Tony's coworkers have sent flowers, stuffed animals, books, tutus and the most incredibly awesome balloons we have ever seen!  McKinley's room has gone from being depressing and decorated with IV poles and monitors to being overwhelmed with color and cheer.  Every single gift she has received has brightened her mood and brought a smile to her face, which is priceless to her mommy and daddy.
As of this morning the Dr's are talking about discharging her tomorrow!  If she can keep her temp down and her vitals good then we should be out of here, just one day shy of a week!  She most likely will come home on a permanent antibiotic and have some more testing done to see if/what we can do to prevent this from happening again in the future.  For her health and all of our sanity we cannot have this happen again!
As always, thank you all for your kind words on Facebook, by text message or voice mail and above all else, your prayers!  McKinley is once again astounding us all by bouncing back from something that was very, very scary.  I truly believe a lot of the credit is due to all of you, who stop everything to care for her and her family, and pray!  That and her incredible strong will and feisty spirit...

Potty training a bowel management baby, and my opinion on diapers

Ugh

Yep, I just posted that picture.  I just admitted to the world that that is what my bathroom looks like right now.  What we are going through in our house right now is called potty training, potty training to the 100th degree.  Potty training twins, one that is a boy who is terrified of pooping (nuff said) and one that is an adorable little girl who may or may not control her bowel function.  Meaning, we sit on the potty for hours (literally) multiple times a day.  Today it's been two, 1 1/2 hour sessions, and it's only 2pm.  So we have books, milk, snacks, iphones, stuffed animals, and whatever else will entertain a 2 year old while she sits, for hours on end, on the potty.  I'm really thinking I need a bathroom remodel with a more serene decor...but I'll have to discuss that with Tony later.
So first, an update on McKinley.  Her kidney is doing great.  We had a scare a couple of months ago where her levels jumped drastically, but little did we know that she was coming down with that terrible stomach bug that everyone has had, plus a small growth spurt and was probably a little dehydrated so it's now more under control.  Her levels are deteriorating a little bit, but the Dr's are reminding me that that will continue to happen as she grows.  As she grows, her kidney will likely not be able to keep up meaning her levels will deteriorate.  However, that doesn't stop me from praying for a miracle!
What we're struggling with now is TERRIBLE diaper rash.  The worst I've ever seen.  Multiple open, bloody wounds, need I say more?  She can't sit, walk, sleep...it's not a good situation.  We're desperately trying to get her bowl movements under control so that she can stool once per day as opposed to all day long.  Literally, all day long. (Like how I didn't say poop in that last sentence?  I'm trying to be more "adult" sounding :))  We just started a new medication regimen that seems to be making a bit of a difference so we're hoping that will help get it all under control.  Fingers are crossed and prayers are appreciated!
That brings me to my next topic.  Diapers.  Whether you care or not, here is MY opinion. :)  For newborns, Pampers or Luv's.  Which is funny because one is expensive and one is pretty cheap.  But from my experience, they're pretty much the same.  Both are soft but not necessarily very absorbent.  So they are comfy for tiny babies that you change often or that are going to blow out of any diaper no matter what it is.  But by the time your child is 3-6 months in my opinion, it's Huggies all the way!  The diapers are a little stiffer but those suckers hold in even the worst of over watered kidney diseased babies pees!  I haven't yet found anything better.  Maybe Kirkland Signature diapers from Costco, they're pretty comparable.  Target's brand Up and Up diapers aren't too bad either.  Don't buy the Babies R Us brand.  They're excitingly cheap, but worthless.  For overnight diapers, no surprise here, Huggies Overnights!  They don't keep McKinley dry all night; but they definitely keep her dryer than any other overnight diaper we've tried.  And for what it's worth, the Carter's crib sheets that we bought when she was born have lasted through daily washes (again, not exaggerating, probably over 300 washes each since we have a couple sets).  So those were a great purchase!  And if you have a baby with a feeding tube, or one that you don't want to get out of their crib (not totally sure this works for that but I've heard it from other parent's and it kind of makes sense), have them sleep in the Halo Sleep Sacks.  McKinley is just now growing out of the XL sack so I just ordered the ones that have feet sewn into them.  We'll see how they work.  For the feeding tube it's great because they zip from top to bottom so you can run the tube through the bottom so it doesn't twist and rub as much.  For not getting out of the crib, they can't lift their leg and swing it over the top so it seems like it would work.  McKinley's still in her crib at least and she's pretty resourceful :)
So there's my opinion on diapers, crib sheets and sleep wear.  I'm pretty opinionated so that felt good.  And I'm totally open to any one's suggestions for diaper rash care, nighttime absorbency, feeding tube management...I sometimes feel like I've tried it all but I still find new things out every once and a while, and I'll try anything!  Comment on this blog if you have an ideas/suggestion.  Until next time....