'Twas the night before transplant and all thru the hospital....

We'll it's been a LONG day! It actually started last night when we checked in. By the way, we got a call from the Ronald McDonald house about 10 minutes before we left Fallon saying they had a room for us. So for that we are grateful! That houseis AMAZING and I would highly suggest dropping money into their containers every time you see them! Anyhow, we got unpacked there and called admitting. Daniel's room was being cleaned so we had to wait about an hour before we could go up to the room. So Daniel and daddy found a wagon and went for a few walks. (I forgot my USB chord for my camera at home, so you don't have any pictures! SORRY!) Anyhow, that night (Monday) was a LONG, LATE night! It took over an hour to get the IV started in him. Keep in mind it's 9 pm before we get up there, so it's already Daniel's bedtime at that point. So we had an hour of screaming trying to get the IV in...so that tuckered him out more! They started some saline on him that night. Since he is getting an adult kidney, it will be use to adult blood pressure, so they are saturating his body and making his blood pressure a little higher so the kidney will just jump right in and not wonder why it has to slow down all of the sudden. Dr. Talley also stopped by and she explained some things that happened today.
So today started with a 6 am blood draw which, of course, he was WIDE awake after that! He has been pumped with fluids today and is (in 35 minutes) on a strictly IV 'feed', as surgery is tomorrow. Our social worker came by and showed us the PICU. He'll have his own personal nurse. That makes me feel good! I also found out the the first 24 hours are 'easy' it's the next 24 hours that gets all the problems as the kidney wakes up and starts dumping everything from his body....potassium, phosphorus, etc. So Dr Talley (and her little team) will be with him all nigth putting back into him what he is peeing out. (We LOVE Dr Talley...I wish you could all meet her!) Anyhow, he has started his anti-rejection medicines tonight and will get another dose at 5 am and 8 am. That way the meds are already in there and the kidney won't work so hard to get rid of it right off the bat. Surgery is scheduled for 1:30 pm. Kelle goes in at 10 to be harvested and then Daniel will be taken down to receive it. They will be taking both kidneys out of him, so they will first take out the left kidney (about a 2-3" scar) and then (we found out differently than we thought at first) they will cut from about 2" to the right of his belly button and cut about 5" up to his ribs. There they will move all this intestines and things, remove the old kidney and put the 'new' one in! So it will be protected! YEAH! I was dreading having to tell his brothers no more rough housing with Daniel! He has a kidney in the front!
At any rate we've met with more people today that will be involved that I ever imagined! We feel so fortunate to be here! Everyone has been INCREDIBLE! Kevin's sister, Brenda, will be coming up for the day, we are grateful to have some company! Surgery will take about 6 hours....give or take and problems.....like not producing urine, then they'll have to go figure out why. Anyhow, I'll update when he is done....so probably late tomorrow night.
OH! Something we found out. Little Daniel has made a name for himself here at Stanford among the nephrologists. One of the doctor's came in and asked where his feeding tube is. We were very grateful to have avoided that and know it was an answer to our prayers. This doctor then said, "Then this must be the little guy Dr. Alexander was talking about!" Dr. Alexander is the head nephologists here, so he has been discussing a lot of patients and apparently Daniel is the only one who has ever been able to avoid the feed tube! We now realize how extremely blessed we were in that case.
Thanks again for all your prayers, and fasting and thoughts! We know Daniel is in amazing hands and Heavenly Father is watching out for him! Maybe I'll find a USB chord, too and get some pictures on here! If not, I'll catch ya all up next week when I fly home. So from here on out, I won't email you every time I update the blog. Maybe on just "BIG" things! I did find out we could be out of here in as little as 2 weeks! YEAH! I was happy to hear that!

Another blood draw!

We just had another blood draw. And the results:

Creatinine (the indicator of kidney function) DROPPED 0.3! We were told about 1 1/2 years ago that the creatinine will never changed unless it increased. Once there is kidney failure, we will have that number increase or remain the same every time. So we chalk that up to all the prayers on Daniel's behalf! Thanks for helping with that miracle! His kidney function went from 11.89% to 12.86% YEAH!!

BUN (the indicator of Nitrogen in his system and dehydration) went up from 93 to 103. When it was 126 He was hosptialized. I fear that will happen. It also is an indicator of kidney function and filtration.

Potassium (which is in EVERY food out there!) went down from 4.6 to 3.9! YEAH!

Phosphorus is high, but he takes a binder to help eliminate that. So I wonder if they'll increase that dosage.

So.....we'll see what they tell us! We leave for the hospital one week from today! Tears of Joy were shed today instead of sadness over the creatinine level. Thank you for ALL the prayers, thoughts and fasting....putting his name in the temples and everything! It is working! THANK YOU!

Today's news.....better than yesterday!

Well, our amazing social worker at Stanford got right on the phone with Ronald McDonald House when she read my email to her. She said they are going thru a bunch of staff changes over there and so communication isn't the best right now. She explained our situtaion (how far away we live, how long we'd need to stay there, etc.) and we are now on "high priority" and will probably be in a hotel for 1 week....2 at the most! So that is great! I will probably be staying up at the hospital with Daniel anyhow until he released (3-4 weeks after surgery), so that is great!
Labs....I just got an email from our nephrology nurse. Daniel is to have NO potassium (that was one of his REALLY high levels) and keep him "very, very, very hydrated" with repeat labs on Monday. So that was a relief!
Thank you to all of you who have said a prayer or put Daniel's name in the temple. I am not exaggerating when I say our name is in about 10 different temples! Know that we appreciate it all! We know that this is just minor compared to some things people go thru! And for that we are grateful! We feel calm and comforted knowing that things will be OK....no matter what the outcome! Heavenly Father is watching over Daniel and our family. Thank you, again!

Today not a good day to report on!

Well, Ronald McDonald house called and they have no openings for us. So we are on the waiting list for when something opens up. Yet we will have to find something until then.
Also, Daniel's labs came back REALLY bad today. I KNOW I will be getting a phone call from Dr Talley over this one! His creatinine has increased 0.1 for 2 weeks in a row (normally took a month to do). Today's draw (keep in mind we didn't do a draw last week) was up 0.5! That is a weekly increase of 0.25. Needless to say, I shed a few tears and I am packing some things in fear they will call and tell us to get him to a hospital or something! Some of his other levels aren't good, either. Anyhow, that puts his kidney funciton at 11.89% and 10% he needs to be on dialysis. So we'll see what transpires the next few days! thanks for your prayers! 12 days until we are admitted to the hospital. Hopefully we can hold off until then!

Change of Date

Well, as many of you know, yesterday's blood draw didn't go as hoped. It rose again. So we have a new surgery date! Kelle is amazing and is fine with moving it up! I just worry about ruining any of their schedules! But, Wednesday, August 27th is the new day. We have to be there on the 25th, Kelle on the 26th and school starts on the 26th! So mom is going to miss the kid's first day, but it's just a mom thing! Not a kid thing! They could care less, I'm sure! So that gives us about 3 1/2 weeks to get ready! Thanks for all your prayers and thoughts!

We need your prayers!

We got some not so good news this past Friday when we were in Utah at a wedding. Daniel's levels didn't come back good again. They are still rising. They rose in 6 days what normally would rise in a month! His kidneys are shutting down quick. They have worked hard the last 2 1/2 years and they are tired! We need them to last 7 more weeks until his surgery. Wednesday we go to have another blood draw and we really need the level to stay the same or drop a little. Otherwise we will have to move the transplant up. His doctors are trying to avoid dialysis because he'd have to have surgery to do the peritoneal dialysis and that requires a catheter to be surgically placed in his abdomen. Well, according to what I've read, you can't use it for 2-3 weeks....cutting it a little close to surgery and making it a almost a waste to do. He has been activated on the deceased donor list from inactive status to active status. So, if for some reason a kidney comes available and we need one before Kelle could donate, we could. But we don't have to take if we don't want to. But anyhow, what we are asking for is just a little prayer to go up for Daniel that his level will be good on Wednesday. He got a priesthood blessing today from grandpa Lords.....so hopefully we have a enough faith and it's Heavenly Father's will!

Also, I've copied the link to the front page article the Fallon Free Star did on Daniel and Kelle last week. It's a nice article and pretty accurate!
http://news.rgj.com/apps/pbcs.dll/article?AID=/20080725/FALLON/807250312/1029

Thanks everyone! I'll email on Wednesday when we find out his results. We need another little miracle! I hope there isn't a quota, because we are probably pretty close to filling ours! :-)

Kelle Herzog....Our Angel Donor

Below are some pictures that the freelance photographer took for an article in tomorrow's local newspaper. The couple of Daniel laying on the ground and Daniel & Sammy were inside the office. The other ones were outside with Kelle. She is our donor for Daniel. She is an amazing women who lives here in Fallon. We met for the first time and she volunteered. In fact, I don't even think Daniel was awake at the time. I think he was napping. Anyhow, she is a really neat lady that I wish you could all meet! Enjoy the pictures! And 54 days! But who is counting?!