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!