Some pictures!

This is how Daniel looked pretty much the WHOLE time daddy got to hold him today! (For the first time, by the way!) He LOVES being held, because he isn't in his bed! He keeps asking to go for walks. (We do the wagon, don't forget.) So when we are moved then we'll track down a wagon to stake claim on!

These are some balloons that Daniel just went ga-ga over! They are from his grandma Laura in Michigan. It came with a little Prince Charles Spaniel (I believe is what the tag said) stuffed animal. He was cute and we named him Stanford. Very fitting! We've had too many doctors and nurses to pick a favorite. We thought of Lucille (since we are in Lucille Packard Children's Hospital) but it is definately a boy dog! DOesn't look feminine in any way! Thanks g-ma Laura! He enjoyed hitting daddy with the balloons for a good 15 minutes! And good not to pick latex. It's a latex free hospital due to allergies.

Aunt Brenda, Uncle Moe, Darrin and Derek came up! Here is a picture...notice Daniel STILL in a bad mood as they were leaving!

Notice arms stretched HIGH above the heads! Maggie is our #1 person today! She took out the neck line and the left wrist line! Daniel got a sponge bath and was LOVING life!

A few other things I failed to mention about today (I think!) was that his potassium, phosphorus and magnesium are doing good. The levels are at or almost to where they need to be. So now they just wait until the kidney starts storing them and his levels go high...then they can cut back on substituting them into his blood. WAY happy day because no drip attached to PICC (pronounced PICK) line! So there are the pictures! Now you can erase those last images of Daniel in your head!
Kelle is doing good! Stopped by this morning only as I was too busy this afternoon. (Sorry Kelle!) She had a few nerves that were cut (common thing I guess) and she was in a LOT of pain during the night and today. But the pain management team came in, gave her some lanacaine (sp?) and she was instantly better! She'll have to take some every day for 2-3 months while those nerves heal, but she is happy with that becuase she can still go home tomorrow! YEAH! Remember, if you want to email her send it to herzogkj at hotmail dot com. (I had to type it like that because spammers pick up on it or something!)

Sunday Update

I didn't get to report this morning as we were a little 'late' (by our standards) the the hospital. Daniel didnt' fally asleep until 12:15am and we were there until he did. He was full of gas and liquids and just miserable! We slept in until 7:40 scurrying around and trying fast to get to his side because we knew he'd be awake! He looked a TON better this morning! He had not as big of an abdomen and 'man area'! :-) His legs are a lot more normal looking by his standards. He wouldn't eat breakfast or lunch, but drank water. The eating worried us a little, but then again, look what happened last time he ate! He was still uncomfortable, trying to boof and things, still produced nothing after the suppository last night. So (our poor nurse) I bugged her enough and told her I'd go bug the doctor, for a stool softner and an enema! He got both! YEAH! However he pushed out just a little poop, some gas and was comfortable for a while. So that was a relief! We read books, Kevin held him for a while (I'll put pictures on in a bit, when we get back to the House.) and even blew bubbles! He was his old self! It sure was great to see! Dinner came and we thougth he wouldn't eat....but he had.....Mac-n-cheese! He couldn't shovel it in fast enough! He LOVES that! So he did good for dinner. But now the gas is building up again. So the doctor's are currently working on a solution. The is getting the last of his 2 IV's in. The one in his neck and the one in the back of his hand. He will only have his PICC line in (that he has for the 3 months we are here for lab draws) his JB line (drains fluids but that is suppose to come out tomorrow) and his catheter (which will come out in 3-4 weeks!) So he will be A LOT easier to move....right now it's a 2 person job and feel a lot more comfortable! He has a brace thing on his left wrist so he can't bend it because of that IV. So overall, today was a good day. He is getting back to his old self! Joking, coloring, talking to us more and more.
Brenda, Moe, Darrin and Derek came up and brought us dinner and visited a while. It was right as he was waking up, so he was REALLY grumpy! I felt bad. It was great to see them, however. Especially the non-cafeteria food! I can't wait to get to the House and be able to make foods! His pain meds are getting less and less! He only had 1 dose of Tylenol with codine and 1 dose of just Tylenol. He did have a IV injection of the "A" drug I can't remember the name to! I haven't seen the way it was spelled, so I can't remember it! (My brains works weird!) Anyhow, so pain meds are decreasing which, to me, is a good sign! They are working on a room upstairs for us. There hasn't been one open up, so we are still staying put! I think that is about it! I left my book downstairs that I write notes in all day. I'll add pictures later and anything I left off! Thank you guys for all your thoughts, prayers, emails and messages. It is GREAT to hear from you and I wish I had time to respond to them all.

Forgot to share this

Thursday morning after Daniel's surgery, when he was suppose to TOTALLY knocked out, Kevin and I went up to the Oakland Temple. (The temple is a BEAUTIFUL place where we are married for eternity, sealed to our family members for eternity and do that kind of work for those who have passed on already.) Anyhow, while we were sitting in the chapel waiting for our session to start, the organist started playing a song. Keep in mind I was feeling guilty about being there and not with Daniel. I kept telling myself he'd be OK. These are the words to the first 2 verses. I know them, so when she started playing it, I just started crying!

Dearest children, God is near you,
Watching o’er you day and night,
And delights to own and bless you,
If you strive to do what’s right.
He will bless you, He will bless you,
If you put your trust in him.

Dearest children, holy angels
Watch your actions night and day,
And they keep a faithful record
Of the good and bad you say.
Cherish virtue! Cherish virtue!
God will bless the pure in heart.


I knew Daniel was going to be OK. Kevin and I had a great time in that gorgeous temple! Felt very comforted and at peace about things. We are grateful for the Holy Ghost comforting us!

Saturday Night Report

Today had it's ups and downs. First of all, I've gotten a few emails of people poking jabs at Kevin leaving for class during all this. Don't give him too much grief. He can't take a semester off, he is in a cohort which means he has all his classes scheduled for him until he is done. He goes thru with all the same people. You can't just jump in and out of it as you please. Once you are in, you are committed. He started 2 years ago, just as we found out about Daniel. And we weren't expecting tranplant so soon. Also, Daniel was suppose to be incubated this whole weekend, but he had other plans. And lastly, it's the first weekend of classes for the semester, he had to go to get books and things. He is missing 2 possibly 3 other weekends depending on when we get to go home. Daniel and I did just fine! Kevin is taking 2 1/2 weeks off of work right at the beginnign (not to mention the rest of the time we are here), the 2nd day of it being the 1st day of school. So he is being a GREAT support and daddy! :-)
So back to Daniel. It started out a good day. He got to eat lunch, pbj and chicken noodle soup (just the noodles). Dinner he had chicken strips, tator tots (his favorite) and a little bit of apple juice. He did really well until about 7:30. I'll come back to that. He had a few bladder spasms today, but his nurse kept this b??????/opium suppository (I cant' remember the "b" drug that's in it) and that helped a LOT! He came off, in the morning, his drip pain med. So he is now strictly IV or oral (or rectal) pain meds. So he was awake a lot more! We read books, he interacted like my old little Daniel. He made animal noises and train noises. He responded to things on TV. It was GREAT! I even got to hold him for 2 hours until dinner came. So that was wonderful. Then about 7:30 he started crying and saying 'owie'. Then it got louder and louder and louder. I got pretty iritated at the 1st year fellow we had covering him. (She completed her residence as a pediatrician, now has 3 years to specialize in nephrology.) I told her earlier that his belly was really swollen and he was filling up with gas. She came right out and said, "No. It's not gas. It's all the fluids we are pumping in him." I said, "How can it be when his shoulders are fine, legs and feet are OK (the are still a puffy, but not as bad) and he just started eating foods? Can you give him a lasix for the water retention then?" "No. He is peeing enough." and she left. I was upset. SO when he started screaming and writhing in pain, I was DONE! I told her it has to be gas. Something is OBVIOUSLY wrong and what can he have for it. She said mithicone (sp?)drops wont' work and ordered more sedation. Well, that didn't work! Not only is he groggy, but he is still screaming! Finally she left and I asked the nurse what she can do. She ordered a suppository (she listened to his bowels and didn't hear much movement) and have him some more Adivent (sp? or even incorrect drug) to help with swelling. He has parts of his body that are SO swollen! Let's put it this way, guys....you would feel his pain! Anyhow, the nurse then called the on call doctor (the one over the fellow who she should have been calling all along) and talked to her directly. His liquid levels in his blood where high (I failed to mention his BP was like 154/140 and when he'd calm down they were 120/112...those 2 numbers I knew HAD to be farther apart than that! Resting heart rate was 140!) So they are cutting his IV until midnight and giving him lasix every 3 hours. That will help him pee it out. That will help his BP come down and make him more comfortable. Maybe he'll fall asleep and Kevin and I can go back to the house and get some rest!
Kelle is doing really good! She is feeling better and got to take a shower today. (Sorry if you didn't want that shared Kelle! Let me knwo and I can delete it!) And for any of you who have EVER stayed in a hosptial or even not been able to shower for 3 days KNOWS how great that feels! She is looking great and still scheduled to leave on Monday! She is hoping to get out and walk tomorrow and come up to see Daniel. That would be great! All Daniel's nurses know about her, so I'd like them to meet her! Kevin's sister Brenda and her family are also coming up. They live a little over an hour south of here. Well, I'm off to see if Daniel is asleep yet!

Saturday Morning Report

Well, Daniel did pretty good last night, I guess. I asked the night nurses leave me a little note. He woke up 3 times for about 15 minutes, wanted mommy or daddy, but never got too upset we were there. We are not allowed to sleep in the PICU so that is the ONLY reason I am not here at the hospital. They have our cell phone numbers if things get too bad. He had some lasix injections which helps with peeing and water retention, so his legs and toes are looking a lot better this morning! The IV in his leg and one of them in his right arm is gone (now he just has his PICC..I was spelling it wrong....and one more IV) and then the one in his neck are still in. So those 3 plus the drain line, public catheter, On-Q (local anesthetic to kidney) means we only have 6 things sticking out of him! YEAH! We are down from 9. Plus they got rid of the row of tubes (it kindof looks like your sprinkler system valves if any of you know what that looks like). It was 1 IV with 5 different port enteries on it. Anyhow, he is getting more and more 'normal' looking. He has been completely taken off his pain meds drip. Now it's oral, rectal or IV. So he'll be more alert. No news on moving upstairs. We have to wait to see when there is an open room. His bladder spasms are still happening so he has an order for a drug (I can't remember the name of it yet!) that will spot them. We LOVE that drug! But he is looking better. He is able to drink and will have a liquid lunch! So I just snuck out to get some books for when he wakes up. I thought I'd report quickly.
I have also had many of you ask for Kelle's email account. I asked her and she said that would be fine to give it out. So if you'd like to email her directly I am sure she'd LOVE to hear from you! herzogkj at hotmail dot com (I was told if I type it the way you would into an address, sometimes they get picked up and put into spam. Hope that makes sense!) I haven't gone down to see her yet today, Daniel hasn't slept for very long. Gotta get back to him, though!

Rest of Friday report

I didn't read what I put earlier this morning, so if I repeat,SORRY! I am also tired and I am going to try to get to bed before 11 pm, so I am typing fast and will surely have typos! We had many ups and a few downs today. Daniel was a lot more alert today. Staying awake an hour or a little more at a time. So I would go the to library there at the hosptial while he slept and checked out books. then the next time he was awake we'd read them. He was just his old self talking about the book and making animal noises and things. IT WAS GREAT! He even wanted to watch Mickey Mouse (that's a boy!) and so I checked a movie out for him, too! He started having bladder spasms. Those are NOT fun! They hurt really bad....I know from experience! Anyhow, it wasn't fun when those happened. They only last about 30-60 seconds so by the time meds get administered they were over. But hten he slept well for a bit. About 7:30 pm he had about 4 in a 10 minute time, so a rectal suppository was given to help with the spasms and he rested well. His kidneys are still being 'stupid' as Dr. Talley called it. She said hopefully by Sunday evening they will realize they need to keep those things and not dump them. So, since he is so ahead of schedule, we'll pray for tomorrow! Then we can get rid of 2 of his drip lines! He is really swollen and puffy. (to be expected) It's from all the fluids they are giving him. His skin was getting really tight, so they have him a lasix in his IV. It helps him pee a lot! It helped. His upper half of his body (chest area) really went down in swelling. Lower, still really tight. So they are going to start a lasix drip on him tonight sometime. So hopefully tomorrow he'll feel better. (To my touch...it doesn't hurt him or anything) Anyhow, I got to hold him today at 4 pm for 2 hours. He snuggled right into my arm next to the chords and IVs and fell alseep! Then I started crying! The simple joys of life that we take for granted, like holding our kids! It was just a bit of heaven for me at that moment. It got interrupted though becuase a PIC line was put in. I had to leave for 1 1/2 hours. A PIC line runs from his upper arm and it's a tube that was fed into his heart. THey will use it to draw blood from him over the next few months. I LOVE it because they won't have to pick him now! YEAH! So I went off to see Kelle. She was doing good. She got an infection and had a slight fever this morning. They put her on some anti-biotics and she was doing better this evening when I went to see her. She was craving some Sprite so I went and got her some! I'll do anything for her! :-) (And when you read this Kelle...you remember that! The market across the road has some good things! You name it, it's yours!):-) OH! And Daniel is on a clear liquid diet, now! He DOWNED his sippy cup! I woudl too, if I hadn't had anything via mouth for about 72 hours! So tomorrow he gets breakfast!
Anyhow, we are going to be moved tomorrow. That is the plan, at least. He is going back up to 3 West (the name of the wing with heart and kidney transplant patients). He'll be in I-ICU ... Intermediate ICU so his nurse will have 2 patients to watch. So that makes me feel better knowing he'll still have a good eye on him!
Kevin flew to Reno this morning for class. He comes back tomorrow night about 6:30. So I am going to hit hte pillow BEFORE midnight! YEAH! It's gonna be a long day tomorrow.
I forgot to mention that Daniel hasn't had any blood clots, which is amazing! Apparently there are usually a few....but we aren't out of the woods yet. And also, his incisions look really good! It's the drain tube that grosses me out! UGH!

Friday morning report

We got to the PICU room about 8 am and Daniel was already awake. Of course he started crying when he saw us, but he got drugs and calmed right down! WE LOVE DRUGS! He still was awake for about an hour, which is the longest he's ever been awake. So that was good to see! His oxygen line thru his nose is gone, so that helps make him more comfortable. That always tickled my nose when I had one. Anyhow, his labs came back good. Potassium, phosphorus and magnessium are still be dumped from his body but they are putting it right back in. He will be getting a pick line later on today. That will stay in for a few months. They will put it up his arm into his heart. So they'll draw blood and administer meds right into that line. I will leave the room when they do that! He'll also be knocked out for it, though. Dr. Conception (surgeon) gave the go ahead for clear liquids! YEAH! He had a few ice chips and you could feel (I had my hand on his chest....one fo the few places I can touch him without tubes!) you could feel the relief when that hit his mouth! So that was gre at! We are on schedule for being moved up to a patient room this weekend sometime. Probably Sunday. That is good because Kevin will be back by then. He flies out soon to Reno for class and will be back tomorrow night. But the best news I just got.....I GET TO HOLD HIM! Later today they'll get it set up to where I can hold him, so that is why I am typing now, because I probably won't put him down until I leave tonight! I might ask for a catheter so I don't even have leave for the bathroom! :-) Anyhow, only 2 hours here and LOTS of great news!

WE HAVE PICTURES! and an update on Kelle, too!

We found a USB chord in the car! Don't know where it came from! But we are glad to have found it and it's one that fits the camera! Anyhow, here are some pictures of Daniel. The first one is when we were in 3 West (that is just patient rooms) and were waiting for surgery! Daddy and Daniel enjoyed a few naps together in the bed.

This picture is of Daniel in his FAVORITE spot! THE WAGON! They have wagons to pull kids around in and Daniel learned really quick that if he was in a wagon we were going for a walk and going for a walk meant no one would poke, pick or squeeze him! So he liked to be in the wagon. This picture is RIGHT before we went down to surgery! Aunt Brenda took it.



This in Daniel in PICU. He has tubes coming out of him EVERYWHERE! But they prepared us for that. He looked SO good! Coloring was amazing! The tubes in the mouth came out about 11 pm. Breathing tube, and tubes to stomach and lungs that helped drain. Daniel decided to pull them out! He rested better and was breathing on his own....so they left them out. Those came out about 24-36 hours a head of schedule! :-)



This is the scar from his left kidney being taken out. It's about 4 inches long. They glued it shut!



This is the scar from his right kidney out and new one going in. IT'S HUGE! I haven't even seen the end down under the pad yet. So we estimate it's about 8-9 inches long. The tube coming down with the red fluid in it is the draining tube. The curled up brown one taped to his tummy is the On-Q which is a local anesthetic being constantly admininistered to that area. The other one is just an IV port.



This is one from today! He has, as you can see on his left arm, a brace so he can't bend his arm and reach up to pull anything out (they learned he's quick EVEN sedated). But when we came in this morning, our nurse today let us take the right one off so he could hold and put his blankie to his mouth! We appreciated that! So did Daniel!

I found Kelle today! She is doing REALLY good! Her scar is abou 4 inches long. She will be released on Sunday. Her family is coming to get her. She is going to get to walk tomorrow and will come down and see Daniel....so she says. It's pretty good walk from the Stanford Hospital over here to the pediatric hospital. (They are connected.) She is already eating solids. But doing really well. She is an angel and I wish everyone could meet her. Whenever people hear she is a non-related donor they are amazed because apparently that doesn't happen very often for the live donors. But of our 5 donors, 4 of them were that way, so we feel very blessed to know a lot of incredible people who would volunteer to do something like this for Daniel.

Today Daniel's labs are really good! Creatinine is at 0.2! NOT 4.0, but 0.2! That is where they should be! Dr. Talley said earlier today (about 5 pm ) that his kidneys are already 'being stupid' and dumping the potassium and phosphorus, so they have started supplimenting those into his IVs. Let the fun begin! So hopefully they will soon realize that they are to keep them and we'll be good! We are very grateful and blessed to be here! The staff has been amazing and very good with Daniel! They keep saying how GREAT he is doing and we love to hear that!

'Twas the night OF the surgery and all thru PICU.....

Well, at about 8 in the morning we were told the time they would take Daniel was about 1:30. About 9 am we were told 2-3 pm. Keep in mind he couldn't have anything after midnight.....so try to hide a sipper cup from a kid who is constantly thirsty from his renal failure! There is a little play group that meets from 10-12 noon so we took him down there and then thought we'd lay down with him for a nap (you know how little sleep you get in the hosptial!) Kevin's sister came up and spent the day with us! It was GREAT to have her here! Thanks Brenda! OH! I forgot....last night they started him on the anti-rejection medicines so that his immune system would already be lower so the kidney won't start off with a fight against his body. Anyhow, we got back to the room and not even 1 minute later the nurse came in a said the Pre-Op guy was coming to get Daniel! We were so happy, but then again, the pit in the stomach started. So they wheeled him down to the pre-op room. About 15 minutes later we walked back to the doors just outside the operating rooms and the anesthesiologists gave him a dose of meds that made him get REALLY tired and relaxed, which was WONDERFUL because he was getting really nervous and anxious! He knew something was about to happen! So they took him away and that was really hard! Brenda, Kevin and I went to lunch and at this point we were especially grateful to have Brenda there because she was able to keep our minds off of Daniel a lot! I think if it was just Kevin and I we would have just talked all about him! So it was good to keep occupied and have time pass quicker! Surgery was to be about 6 hours with about 1 hour for the anesthesiologists. They have a BUNCH of tubes to put in him! (wait until you see the pictures!) After Brenda left we still had about 5 of the 7 hours to wait, so we went back to the Ronald McDonald house and did laundry and played a game. We then came back up to the hospial to wait. (The sent us with a pager so let us know when he had 45 minutes left of surgery...but we were never paged! So it's a good thing we went up!) Anyhow, we got up here about 7 pm thinking we should be paged any minute! I went over to PICU and actually found our room and our nurse (Daniel has a personal nurse at all times in there.) Anyhow, she said she just had gotten called from the operating room....so we had about 45 minutes! YEAH!
Dr. Conception, Dr Elihu (his assistant) and Dr. DuBois (the anest.) came out. Dr. Conception said that everything we REALLY good. Daniel did really good! He has a BEAUTIFUL big kidney! They gave him about 200 cc (mL) of blood, which is common. That equals about 6 3/4 oz or about 1/2 a pop can. Not too bad! He said as soon as he put the blood in that kidney poofed (his exact word!) right and started producing urine right away! That was great and what they wanted to see! He said his other kidneys that they took are were pretty ugly and we can go see them sometime next week if we'd like. Pathology has to get their hands on them first. So I think we are going to do that! Apparently we could even take them home, but NO Ryan, we aren't doing that! :-) But I will take pictures! He seemed really pleased that everything went so well! The anest. said that they did have to poke a couple times in the neck to get his jugular vein. But everything else went well. So we had to wait about 10 minutes to go see Daniel in PICU.
We walked in and he looked SO GOOD! Knocked out, of course, but when we started talked to him, he actually started moving and eyes were fluttering. Apparently he recongnized our voices they said! That was great! They ended up drugging him a few times while we were there so that he wouldn't hurt himself. He had a breathing tube and stomach tube going down his throat. We had to wait about an hour before his drugs from the drip that keeps him out constantly arrived. Dr. Wong (the on call nephrologist and our second favorite nephrologist....next to Dr Talley!) was there. She said everything was looking great! She got to play with his old kidneys and they were pretty bad! A lady came in a did an ultrasound on his new kidney! It is WONDERFUL to see a "REAL" looking kidney in there! I couldn't really see it at first because there was no urine in there! His old kidneys were about 2 inches in diameter (across) but this new one is 11/64 cm = 4.6 inches! Over twice the size! But the blood flow was great! The arteries were all looking good! (They take the artery out of Kelle and put it in Daniel, too!) Anyhow, we were just THRILLED at everything! Everyone just kept saying that everything was perfect! Just as they wanted it! We feel extremely blessed to have had everything go so good! Thank you to all your prayers on Daniel's behalf! He might get the breathing tube out tomorrow, come out of his 'sleep' and be back in his private room by Saturday! That is a great case scenario! So we'll see!
Here is our address at the Ronald McDonald House:

Amy, Kevin & Daniel Lords
c/o RMH
520 Sand HIll Road Room M309
Palo Alto CA 94304
(650) 470-6000 is the phone number and then you as for the room M309. I won't be there for proabaly another 1 1/2 weeks. They said Daniel could be released from the hosptial 1 week after he's out of PICU. So that would be actually while I am in Fallon! Kevin will be here. Anyhow, there you go! We are tired! It's almost midnight! We've had a great roller coaster of a day! Thanks, again, for all your prayers! We know they are what got Daniel and is getting Daniel thru this all so amazingly!

'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!