Monday News

Well, today didn’t go exactly as we planned. It started with a LATE night! Daniel didn’t nap yesterday, so he fell asleep at 8 and woke up raring to go at 9:30! We were awake until 1 am! Got some scrapbooking done, though! Then we had to get up for labs this morning and clinicals. At clinicals we learned his creatinine was 0.7, which was up from the last draw. SO…..off we were sent to the Day Hospital (outpatient part of the hospital) for a 6 hour hydration session, an ultrasound and another blood draw after it all. I was tired, hungry, Daniel was grumpy all morning and not eating or drinking….needless to say I cried! I was NOT happy about this! We weren’t prepared meaning we had 2 diapers, no extra water, no books, toys or anything to do! We made it though! They had most of that stuff up there. Anyhow, Daniel still has urine in the kidneys….about the same amount. Apparently what was explained to me was that when the creatinine elevates, yet his fluid intake is good, there is a fear for rejection. The new kidney will start to atrophy and that shortens the life of the kidney. If the creatinine level didn’t come down, we would be admitted to the hospital immediately and pumped with fluids and a biopsy would be done. And after waiting 2 hours (so we were gone for 11 hours total today from the time we left the RMH) we got the result for level and it went down to 0.5! YEAH! We were released and just regular labs on Wednesday. So grateful for that and know Heavenly Father was, once again, watching out for Daniel. Kevin has changed his flight to fly in tomorrow night, instead of Wednesday, so I am grateful to be able to see him for more than 1 hour at the airport while we pass Daniel off! I need to get my camera hooked up to finish pictures and also to put some on from yesterday.
Sunday they brought Rosie the Pony in! I forgot about my allergies and just congested right up! She was SO soft and cute! Daniel loved her too, by the way! :-) Anyhow, this mother/daughter organization came did a BIG party for all the birthdays this month. It was amazing! The theme was barn animals/cowboys. Ronnie was one of the girls that attached to Daniel. She was really sweet and nice! Anyhow, there were 3 different crafts, Pin the Tail on the Pig, cowboy hats, barnyard animal balls for the kids plus dinner and dessert! It was amazing! We spent probably 3 hours there! Now you can see why Daniel never napped!
It's been a while since I've written, but nothing much happened last week. Hung out, keep Daniel entertained, scrapbooked, finished ANOTHER book (that is book #4) and walked a lot!
Today we have nothing scheduled by walking (we are going to walk to IKEA....it's about 2 1/2 miles I believe...but tomorrow is weigh in!) and get ready to pick up daddy this evening at the airport! YEAH! I fly home tomorrow to see the kids and take care of my Alison's Pantry business. I welcome the reprieve. I am tired and can't wait to feel a little 'normal'! :-)

The Family Has Left California :-(

I meant to get this out yesterday, but Daniel thru a HUGE tantrum in the computer room and we left. So here it is:
Well, we had a fun and SHORT visit with the family this weekend! They got here about 6 pm on Sunday night and we ate dinner and hung out a little bit here at the RMH. Then they all went back to their hotel. Monday morning we had lab draws and they met us up there. All the girls at the lab wanted to meet the kids anyhow, so that was good. Then we walked over to the clinicals where the ladies over there wanted to meet the kids. We came back to the RMH ate some breakfast and then played in the back yard a while. Brenda got there and we visited a while before lunch and then we left for the Malibu Grand Prix park and after FINALLY finding the place, we started the fun! The kids have never played miniture golf before. It was awfully warm for Sept in CA (we've been having a lot of those days lately....makes it hard to walk....low 80s with humidity feels like high 90s!) Anyhow below are some pictures! ENJOY!



Comptyn striking his pose up in the tree house at the RMH!


Nathan and his cute face! How can you NOT love my kids?!?!?! :-)

Watch out! Bryce has got a MEAN swing! He didn't understand that less is more in miniature golf!

OK....my camera battery just died! I'll upload more pictures tomorrow!

As for today's activities we started out in clinicals. Labs yesterday were good. We need to get more potassium in him....dairy, fruits, veggies, potatoes, etc. So we walked to this little Farmer's Market we foudn that we LOVE! Clinicals went well. They are going to see if we can ween Daniel off of the NG tube at night and see how he does. So we are going back down to 560 mLs over 8 hours instead of 700 over 10 hours. So we'll see how that goes. Hopefully he'll wake up and want to drink during the night to keep the kidney hydrated. Daniel wakes me up so much during the night at this point, I will just stick a cup in his face each time! We get to decrease his phosphorus at night by 30%. So that is a good sign!
My sister, Lora, called today and she is going to fly out to see my from Ohio on Oct 15th thru the 19th. I am really excited to see her! It's been 5 years! The family will be coming the night before she flies out, too, so she'll gett to meet Nathan, Daniel and Sammy all for the first time! We will have fun! Then Kevin and the kids will stay from the 18th thru the 22nd. So I am excited to be together again as a family!
Tomorrow morning we have labs and then nothing! We are hearing the weather is suppose to cool off some, so we are going to go for a walk to find some parks to play at around here! Our friend Layton and his mother Leah are going to join us! Until tomorrow!

Saturday report

We started out with a good night's rest! YEAH! Daniel slept well, which I was grateful for! We got up for lab draws and then had to call the on-call ped. nephrologist. She wanted us to wait around the hospital for the results (takes about an hour) and then she wanted to see Daniel. It was Dr. Garro who is actually a fellow (she's a pediatrician studying to specialize in nephrology.) Anyhow, about 1 1/2 hours later, Dnaiel was REALLy tired of the train we were watching and so I called her to tell her we were going to a walk and to have her call my cell phone when she gets results. She was checking with lab even as we spoke. They never received the blood! I gave her my cell phone and she was going to investigate. They did find it, eventually and we met up with her. She called later with the results. Daniel's creatinine levels went down to 0.5. So taht was great! 0.4 is where they'd like them. We'll see on Monday how they do. But his Prograf level (the anti-rejection med in his body) was at 8.6 and it should be betweeen 10 and 13. It's never dove this low. I dont' know....but we are increasing prograf a little this weekend and then we are redrawing blood Monday morning.
Other than that, it was a relaxing day. Did some laundry, Daniel took a nap while I read (started my 3rd book since I've been here!) and then went grocery shopping for some food for whne the family comes TOMORROW! YEAH! Probably won't post anything until Tuesday....so signing off until then!

Friday's update

We started out the day with a lab draw...which I'll report on that later. The following is the article in the paper that was today. Nice article!

http://news.rgj.com/apps/pbcs.dll/article?AID=/20080919/FALLON/809190330/1029

Brenda and the boys came up and we went for a walk around Stanford campus. It is a really beautiful campus! We walked around the old part and saw amazingly detailed buildings! Then we ate lunch at a cafeteria we found up there. Then we came back. Daniel and I went off to do a few things when Amy (our nurse)called and said Daniel's creatinine level was at 0.7! NOT GOOD! So we had to go up to the hospital and get another renal ultrasound done to see what was going on. One the way up he threw up all over in the back seat. Mostly water. Sometimes (I was told) when the creatinine levels jump too fast, it can cause them nausea.) Anyhow,urine was still in the kidney, lots in the bladder! We had to wait until he peed to do another ultrasound....that happened quickly, thank goodness! We got a call later in the evening from Dr. Alexander saying things looked pretty good. Sometimes when they take the catheter and the stint that runs up thru the ureter, there is a little bit of irritation to the ureter and can cause urine to stay in the kidneys when it should be draining. They were happy to see that his urine did come out a little from the kidneys. Bladder is draining nicely. I also remembered that Daniel didn't drink that much in the night...only 800 mLs compared to a normal 1100-1300. So that could also be a little bit of the problem. SO! TOnight we increase liquids thru the NG tube and redo labs tomorrow morning. So we'll see what happens! Other than that, we had a great day! Good to have company here! Thanks Brenda, Darrin and Derek for coming to visit! I'll have to post Sunday since the lab isn't open on Saturdays! Maybe I'll grab a computer at the hospital. Off to give meds and clean a room!

Thursday's report

Not much today. Started with a clinical appointment. Daniel has gained 1 pound since Monday....and to watch him eat, it doesn't surprise me! And so overall we are up 2 pounds since coming here! We are backing off the Pediasure to 1 can a night in his NG tube, the rest will be water. He didn't sleep well last night as he had bladder spasms every 1 to 1 1/2 hours. Hopefully those will stop soon!
We had an ultrasound to look at the bladder and kidney after the catheter had been out a while. Everything looked good from my 'professional' opinion. I wasn't too happy with the sonographer. Actually his trainer, he was an intern. We step into the room and Daniel starts crying instantly. All rooms with white tables are not a good things for him. Anyhow, I laid on the table with Daniel on me so I can hold him better. The guy is on one side and Michelle is on the other side. She kept telling Daniel (rather rudely I might add) "we aren't hurting you!" or "Watch TV, I put Elmo in." She tried to show him her picture of her 2 kids....ones about 5 and the other 3. Anyhow, she'd cup her hands around her mouth to tell Thomas things at the computer. Finally I said, "You should just move. He's going to keep screaming." She didn't but eventually did. But not until after I feel this VERY warm spreading feeling running up to my belly button and down below my knees. Keep in mind Daniel is poly-uric which means he pees a LOT! And we had exhibit 'A' spread all over my lap! I said, "I think he just peed! Did you take his diaper off?" Usually they give me a towel to put under him. Michelle then patted my on the knee and said, "Welcome to motherhood, dear. You have many more ahead of you." That was the straw that broke the camels back! (Notice I am getting crabbier and crabbier thru out my updates? Sleep deprevation!) Anyhow, I turned to her and said, "I have 6 boys and have never been peed one! Plus I have been a mother longer than you!" She was pretty nice to me after that, but only out of fear, I think!
Anyhow, after that we went and ate some lunch. We then went to some thrift stores because Daniel's belly has gotten to big for his britches! They say some of it is from his new big kidney! But we can't button up his pants! So we found a few sweatpants for him and a couple shirts. (Of course mom found a few shirts, too! 60% off already marked $4 and $5 sweaters I couldn't resist!) Anyhow, his PICC line is kindof bulky so I needed some larger sleeved shirts for him, too! I have to do laundry every 3 days! We found some pads for the bed. Now that he is in a diaper he will start leaking out his diapers again. Last night he didn't because I was up so often I just changed his diaper, too! But that was pretty much our day! He is in the play room right now and sounds like a monkey! So he must be having fun! Tomorrow we have a morning lab draw and Brenda is coming up! Saturday I will get ready for my family coming on SUNDAY! YEAH!

GREAT NEWS!

We are catheter FREE! I was informed yesterday nothing but liquids 3 hours before. Well, when I get to the hospital they told me it should have been 6 hours! So needless to say, he did it without sedation. But he was more mad at the fact they were holding him down then the actual removal of the cath. I went out to the waiting room (I couldn't be in there!) and picked up my book. I read 6 lines in the book and she came in with Daniel. So in less than 2 minutes it was over! Anyhow, we came back to the RM House for ice cream and Daniel did the cutest ever jig! I think he was just excited he was free!
Last night at BINGO Daniel won 3 times! We are now the proud owner of a Shrek Chia Pet. I bet you are all excited! No, we will no be Ebaying it! So don't even look! Daniel was REALLY excited to pick it out! His 2nd prize he picked out Dora the Explorer 10 games in 1 box. His brothers will have fun with that. And the 3rd prize we gave to a little boy sitting behind us. He was sad he kept losing. But it was fun! Daniel (and mom) had a good time.
Today we did a 'Build-a-Book'. They are from Klutz. They are packages of a blank book, glue, foam shapes, paper, etc to make any kind of book you want! We did a "These are a few of my Favorite things...." book. It is really cute and a lot of fun! I am just amazed at all the fun things they have around here to do for the kids. There are 10 tickets to the Stanford/San Jose Football game this Saturday. 2 weekends ago there were 49er tickets! I am waiting for the Great America ones!
That is about all the news! Thanks for checking! Tomorrow are clinicals, but I already found out tonight his labs came back great! One thing I did find out was that Daniel is really prone to cancer...mostly skin and lymphonic (sp?) That makes sense seeing as he has a lower immune system. So I will have some questions tomorrow about things to do (besides obvious sun screen) to help curb those cancers.....if any.

Tuesday Report

Well, it's now 6:15 pm and we still have a catheter in! Dr Conception had an emergency surgery....someone's transplant went a little wrong...new artery that was attached came UNattached. So bleeding internally trumps our catheter removal! And understandably so! I was still concerned about the pains Daniel had been having. So I called our nurse who called Dr. Wong (WE LOVE Dr. Wong....she is Dr Talley's 'trainer'.) Anyhow, she met with us and was wonderful! I finally felt 'heard' and she asked what she could do to make me feel more comfortable. So we had an ultrasound. Everything is where it should be. The stint hasn't moved and we have a small amount of urine in the kidneys, which is common. Anyhow, so now we have a 2 pm appointment for tomorrow. Bad thing, he isn't under general anesthetics this time. Just a sedative and so he'll be a just groggy. So we will NOW be happy tomorrow night!
We did a lot of walking today. started to walk around Stanford campus....BEAUTIFUL! We got into the old buildings and then got the phone call for the ultrasound. So we will finish our tour tomorrow! So we are off to play BINGO! YEAH!

Monday Post

Well, it actually started last night about 10 pm. Daniel started about 3 pm complaining periodically saying "Ouwee! Ouwee!" and grabbing the front of his diaper. Well they got progressively more frequent and worse as the evening wore one. We got up to the room about 9:30 and I was totalling up his liquid intake and output. Noticing that in 7 hours he only peed 100 mLs....I knew something was wrong! Usually he can do a good 1000 mLs. His input/output are usually only about 100 mLs off from each other each day. Last night it was about 700. He then had about 3 of these 'attaches' in about a 30 minute period. I finally called the on-call pediatric nephrologist, which happened to be Dr. Talley. She had never heard of anything like this so she called Dr. Sutherland. I got the call back to meet him at the hospital in 15 minutes. So off we went! He said that the stent that holds the catheter in place (it's right where the new urether and the bladder were attached so to avoid undue pressure on the new seam.) Anyhow, the stent could have moved or gotten blocked. So he was going to call the surgeon and then get some things to slush the catheter line. Daniel ended up peeing just as Dr Sutherland came down the hall with everything! I feel bad, but he was happy for that outcome. We got to bed about 11:30.
So this morning as we were getting up for his clinicals, he had 5 attaches in less than 1 hour. Only peed 475 mLs that night, when normally he did over 1000. So I was glad to go the clinicals. We get there and there is 1 doctor for 6 (SIX!) 8:30 appointments. Needless to say we were there until 11 am! anyhow, he had 4 more attachs there in the office and the Dr there said it was bladder spasms. I kept asking why the urine output is so low, she said she couldn't explain that. I suggested an ultrasound or x-ray or something....so said no. (there was more involved in all this....this is just the outcome) Anyhow, I left VERY frustrated and angry. He only has them when he moves a lot, so I decided to just keep him still today, the catheter comes out tomorrow! YEAH! I'll talk to the surgeon. Dr Sutherland said last night that sometimes the stent can shift and maybe it's poking the bladder and maybe mucus has built up and caused an partial blockage. So anyhow, today was LONG and hard, but we are almost done! But input/output is still 2300 in and only 1100 out! I hate to think where the rest of that urine is!
But we went for walks today, played with the train set (surprise! surprise!) and read some books and colored! Had to do laundry because he has diarrhea, too and messed ALL over the stroller! I cut off the straps becuase there was NO way I was goign to be able to clean the mess out of those! :-) Dinner was brought in from a DELICIOUS restaurant here in town! Ate WAY too much brussel sprouts, pork loin and this amazing coleslaw salad! I think I'll owe money this week...for those of you that know my weekly weigh in thing!
Have a really nice friend here that I was able to sit and visit with for over an hour! Her son had a kidney transplant about 6 weeks before Daniel. So it's nice to talk and compare 'notes' with someone going thru this stuff, too!
Anyhow, 15 hours until catheter is out! 4 days until Brenda and boys come visit and then 6 days until MY BOYZ come and visit! YEAH!

Some Pictures and a little update

Well, things haven't changed a whole lot since the last blog. That is why I haven't updated. Daniel's lab draw yesterday morning (Saturday) was really good! All his levels were right where they should be or steadily climbing to where they want them. So that was great news! I have some pictures of the things we have been doing so I thought I'd share!

Here are Daniel's old kidneys! That is Kevin's hand next to them. The left set has a darker piece. That is his left kidney. So there were pretty small! The ureter is the little tubes coming down from everything. Pathology had already cut them up and things to study, but it's still amazing to see them!

This is where Daniel and I spend a LOT of time! By the Thomas the Train set! I have gotten a TON of reading done here and will be glad on Tuesday when the catheter comes out and I can sit in the comfy chairs about 10 feet away! But for now I have to watch the urine bag so it doesn't get caught on corners!

This is Daniel one night hooked up to his feeding and talking to Daddy on the phone! So relaxed and acting so big! He loves to tell daddy about his day!

Since Daniel and I can't go to church for 6 weeks after surgery (or any other enclosed area like a movie theater....because of germs) we decided to go up to teh Oakland Temple! So we spent about 3 hours there today. We toured an amazing sculpture exhibit and saw a few other things. Daniel had fun just walking around and around and around!

However, seeing all the families coming and going to church (there is a chapel there on the temple grounds) made me pretty homesick! I guess I acutally miss the chaotic Sunday's we have! :-) Tomorrow morning is our clinical with Tuesday the catheter getting removed, Wednesday is an ultrasound of the bladder with the catheter gone (checking to see if it's alright)...plus another blood draw, Thursday is another clinical and Friday Brenda and her boys are going to come back up. OH! They came up on Saturday and we went to the park and walked around! It was really nice! Then next Sunday .....one week....the family comes to visit! YEAH! Can't wait!

HOLY COW! I'm behind!

Sorry for the delay in reports. Now that I am back and away from the hospital, I don't have as easy access to the computers. There is a nice computer lab here at the RMH, but I seem to be out when it's open. I'll have to make sure I'm here. Well, Monday I flew back to California. Daniel was mad at me and wouldn't look at me. He wouldn't even come to me. But, he saw an airplane and shouted "PLANE!" and that was it! Kevin filled me in that evening on all the new meds, feeding tubes, labs and clinicals we had to be to. (Clinicals are just the doctor's appts to go over labs and check Daniel out. We see the nurse, doctors and sometimes surgeon.) Anyhow, my head was spinning a little, but it was all written down! Kevin did a good job! Tuesday morning we got up for the first of supposedly 2 weeks of daily labs and headed back up to the hospital. We then went to his clinicals. Daniel's creatinine level was increased to 0.5 and they want it at 0.2 or 0.3. So luckily it went down to 0.4 for Tuesday and this morning it's back at 0.3. So we are VERY happy for that! Also, we are going to twice a week labs! YEAH! So he is responding very well to the meds and things, so we are VERY happy about that! Mostly because we can sleep in now! :-) Labs were at 7:30 or 7:45 am! UGH! Just need to be up by 8 am now for meds! Our day consists of labs and sometimes clinicals. Then we go for a LONG walk...about 1 hour because we have to wait until 9 am before Daniel can eat after his Prograf (one of his anti-rejection meds) Anyhow, then we come back for breakfast then we go play with the THomas the Train set in the lobby here. We spend a LOT of time there! When I remember to bring down my camera, I'll download some pictures. Anyhow, then we usually do lunch here, mostly just Daniel because we just at 2 hours earlier! Anyhow, run to Wal-Mart, Target or Safeway (grocery store). Fridges are small...so we have to stock frequently..then we go for more walks, sit and read books in the library, sometimes we go up to the room and watch a video. But all in all we just hang out together. I've gotten permission to go to a park during the week (if we can). We just have to make sure we clean his hands really good afterwards. So hopefully we'll branch outside out little block here and explore the CA coast! My updates probably will only be twice a week. So I'd just keep checking and I'll update when there is some news! At this point we are waiting for our 3 month biopsy of the kidney and if that looks good we'll be able to go home! Nov 22nd is when it's scheduled, but they are going to move it up a few days (it takes a week to process) and maybe we can go hoem together as a family! YEAH! Thanks to everyone who has sent emails, cards or packages for Daniel! The sure does love opening them! Tomorrow we get to sleep in! Saturday are labs with clinicals being Monday. So probably Monday evening will be the next entry!

Saturday Report

All I have to say is Daniel is now an OUTPATIENT! YEAH! They were released about 5:30 pm and Kevin said Daniel's eyes just lit up when he said, "Daniel, wanna load 'em up?" (We tell our kids to load 'em up when we want them to get in the van.) So Kevin will be taking care of Daniel, uninterrupted, by himself until I get there Monday afternoon. I could tell they were both doing better! Dr. Wong outlined the meds for Kevin really well. I think that was better than pharmacy just handing him all these new meds and saying good luck! I talked to Kelle today and she is doing really good.

Daniel's article in the newspaper

I forgot to put yesterday's article from the paper in the blog. The picture of the little girl isn't shown in the newspaper, it's just Daniel's picture. But they did a nice job on the article. I like the Fallon Free Star. It's a very upbeat and positive paper!

http://renotahoemoms.com/apps/pbcs.dll/article?AID=/20080905/FALLON/809050352/1029

Friday Update

Kevin said today started out pretty good. Daniel ate a pretty good breakfast after he told him the yogurt was ice cream! They went for a lot of walks, picked up all Daniel's new meds at the pharmacy...$159 for a months worth. Hopefully we'll be cheaper here in NV! The not so good news (which is still not too bad, but we were hoping to avoid) was that Daniel got the NG tube. He'll need supplimental feedings of pediasure during the night so he is well hydrated thru the night. Blood pressure falls during the night and we can't risk damaging this new kidney! Kevin said it wasn't fun! Tried the left nostril....blood came out. (nurse is asking doctor about that one) Got it in the right and he started shaking (tramatic) and then threw up. Poor Kevin is about done! I am really praying they release them tomorrow. If they don't I am going to fly back early. (Sunday evening) Kevin's sister, Brenda and her boys are going up to see him tomorrow, so that will help boost his spirits. Other than that, Kevin said Daniel had been doing great! Joking, teasing, talking, etc. Dr. Conception said that the reason Daniel istn' putting weight on his right side is because it requires using those muscles and it will be tender and sore for about another week in a half or so. Good thing I am taking back a stroller with me! :-)

Thursday Update

Called Kevin this morning and he said Daniel's drip line was taken off last night about 11 pm. That means he is getting enough foods and most importantly, liquids to the kidney! So they are tweeking a few of the meds and then they will release him! Saturday....Sunday at the VERY latest! YEAH! We are thrilled and count this as another miracle! He was suppose to be in the hosptial 2-3 after surgery. He will be released 10 days after surgery! Now if that isn't an answer to all the prayers and fasting, I don't know what is! We have been so amazed at all blessings Heavenly Father has bestowed on Little Daniel!
Daniel finally got the On-Q ball of local anesthectics off! So that means he has his PICC line and his catheter! YEAH! So he and Kevin have gone for a few walks today. Daniel is trying to stand more. He puts all his weight on his left leg. So we are wondering if his right feels uncomfortable because of the LARGE incision on that side. Kevin's goign to ask the doctor's next time they come around. Daniel's been sitting up in the chair playing with toys and coloring! During his nap, his blood pressure fell to 88. (They want that systolic number to be 110-140....that is an adult BP and taht is what the kidney is used to.) Anyhow, they put him on a little saline drip because he didnt' drink anything while he was sleeping....obviously. So I have a feeling we might come home with a NG tube to do feedings during the night to keep liquids in him. We'll see.
But all in all, Daniel is doing great! We will be putting some Germ-X by the front door for those who visit. We are also asking anyone who has even a 'simple' cold to please stay away from Daniel. I met a boy at the Ronald McDonald House that had a liver transplant last August. He got a cold that developed into pneumonia. He spent 6 weeks in the hospital! "Simple" things to you and I will be life threatening to Daniel. He just can't fight common illnesses. So we are nervous about that, but will continue to pray for his health!
I am off to play a game with Sammy!

Wednesday Update

Well, I flew home bright and early this morning to spend time with my kids and take care of my home based business this weekend. Good flight! QUICK! So the update if from Kevin's phone conversations. The biggest news being, they got to leave the room adn go for a walk! YEAH! Let the wagon rides begin! Kevin said Daniel was just thrilled to be out! Daniel has been wanting to stand more and more. Still not walk, but stand. His legs are still really weak from not walking for over a week. But he stood for about 1 1/2 minutes today! he still has the On-Q tube in. Tomorrow morning it's coming out, we've been promised. (We heard that yesterday, too, though! I'll believe it when I DON'T see it! Har! Har! Har!....It's late and I am really tired...stupid jokes come out then! Sorry!) Anyhow, the dietician came in and talked to Kevin about Daniel's eating habits. She isnt' concerned at all about what he eats. he is getting the caloric intake. The nephologist is concerned about him going all night without a drink. The kidneys need to stay REALLY hydrated. Anyhow, I told kevin to tell him we'd get up in the night and give him drinks if we had to, if we could avoid the feeding tube. So we'll see about that one! They weighed him today and he has gained 1 1/2 pounds! That is INCREDIBLE for him! Especially since 2 days ago was his last weigh in....so 1 1/2 pounds in 2 days if AMAZING considering he doesn't eat what he's use to and things. We are excited! the kidneys are keeping the nutrients and he's starting to grow. The post transplant team nurse came in and talked to Kevin. She said Daniel can't play in any more lakes. Nothing that is standing water. Apparently the gross bacteria and things are in HUGE concentration and if he gets even a little bit of water in mouth (and spits it out) those germs would surely wreck havic on the kidney. So only oceans and rivers that the water is moving. No personal pools and only pools that we knwo are cleaned on a regular bases. I was raelly bummed about hearing that. We play out at Lake Lahontan ALL the time! So no more of that! But Kevin said they had a good day. He sat up more, almost at 90 degrees, so he could color and do a puzzle and things. So that is great! Daniel will be released probably on Saturday, Sunday at the latest. We are grateful because taht would be a 1 1/2 week stay after transplant and we were told 2-3 weeks, probably closer to 3. So hopefully no surprises pop up! So that is all that was reported to me! Thanks for reading and caring about our great little guy!

Tuesday Update

I don't have much news to report on Daniel today, which I guess is good! He fell asleep last nigth at 11 pm. I stayed with him. He woke up twice asking for mommy. Then fell right back to sleep. Had some gas pains at 4:20 am, passed them within 20 minutes, but was awake for 1 1/2 hours. So mommy and him watch "Hairspray" on TV. (cute show, by the way) and mom started another one "August Rush" (EXCELLENT movie!). So i've been awake for while! Daddy came up and held Daniel while I ran and did laundry and showered at the RM House. Ran some errands (buy some snacks and food for Kevin while he's here and a few toys for Daniel...he can't play with ones here unless they are wiped clean of all germs. I am not taking chances) So when I got back Daniel was eating lunch. He had sat up for about 45 minutes. His poor little neck and legs are kindof weak from not using the muscles, so he is slowly working his way up the strength again. Anyhow, I held him for a while. He fell asleep, mommy did, too but for just a few minutes because then a nurse came in to show us how to flush his PICC line EVERYDAY! Nobody told us we'd be doing that! I don't think I am liking this PICC line much anymore! Monday and Thursday we have to change the head on it, too! UGH! Oh well! If we can give him shots (which we don't have to do anymore!) then we can clean and flush a PICC line!
Dr. Talley came by to see Daniel. She had her picture taken with him and daddy. It's at the bottom of the email. Daniel ate really well today, played (on a lap of course) and was just himself! It's SO good to see that. Little pain meds. I believe only 2 doses of Tylenol. All over the counter stuff now! YEAH! OH! I forgot! HE POOPED! It's amazing how excited you get over a poopie diaper! Passing a lot of gas still, but his belly is really looking good. Belly button is just a little weird! So we are happy about that. They glued his incisions shut and his left side started peeling off and catching on things. That was painful! So it got cut! Daniel is meeting his goal of 1 liter a day liquid intake. He'll have to meet 1.5 liters when he leaves. Piece of cake! We will need to watch food intake, probably keep a food log. He MIGHT be able to avoid a feeding tube, but that is really rare. They want to make sure he catches up on calories. So maybe one just at night becuase Daniel does eat so well otherwise. So today went well. MIGHT be able to go for a walk tomorrow in the wagon. Kevin will be loning it for the next few days. I fly out tomorrow mornign to go home and see the kids and do my home based business. Monday I'll fly back, Tuesday Kevin flies home for about 2 weeks. They are looking at the end of the week to be released from the hospital. Which, once again, puts Daniel ahead of schedule! So I would have them picking me up from the airport! YEAH! OK...I think that is about all. If I remember something, I'll add it later! OH! My girlfriend from high school (there were 5 of us that hung out together), Nerissa and her husband Eric came by to visit. They are moving from Milpitas to Fremont in a few weeks. Anyhwo, it was SO good to see Nerissa and meet Eric! We have a great visit! At least I think we did. Thanks guys for coming by!
Here is Dr. Talley! We love her and will miss her! (We have a new 'team' now....post-transplant team.)
OK...I can't get her picture on there...I'll have to do it later!

Monday Update

WE HAVE BEEN MOVED! YEAH! As you can imagine we are thrilled to be in a room up in 3 West. That means someone can sleep here with Daniel every night. That was the hardest thing about being in PICU. That and the fact that it wasn't 'family' friendly up there. Here we have a couch like bench, recliner chair, plasma TV with on-demand movies! We can go for walks! (We'll have to track down a wagon tomorrow!) So we are doing great! But I'll back up and start from the beginning of the day.
Remember Dr. Usha and how she said Daniel didn't have gas? WELL...when Dr. Conception (surgeon) came around this morning I talked to him about it and he said, "Well, let's just do an x-ray and see what it is." Needless to say, mother's instincts beat out 8 years of medical training! It was gas! He's been on a stool softener for a while and moving a lot so it's been a lot better for him. He didnt' complain at all today about it.
Daniel got out his JP tube which was the GROSS drain tube. I happened to leave to use the bathroom and came back when it was done! Good timing on my part! I did that on the 2 IV lines yesterday, too! Didn't plan any of them! Glad dad is here! :-) So all that is left is his On-Q line (which is like angel hair pasta small...it is the local anesthetic to the new kidney area) and it is suppose to come out tomorrow! YEAH! We'll have a PICC line and catheter! And those we'll leave the hosptial with!
Daniel's swelling is WAY down! He got another lasix in the morning and so he looks like his old self....ALL over his body! ;-) He ate a really good lunch and dinner. Breakfast they brought he was too keen on, but I got to order pancakes and sausage for tomorrow morning, so he should eat well! He was held all but probably 1 hour of the day and as of right now it's been 13 hours we have been here! So it's great to hold him!
Here is a picture of Daniel eating french fries dipped in ketchup! Something he had to stop doing about 3 weeks ago because of the potassium contend! He was SO happy to eat them! And it's so great LET him eat those things! No more food restrictions! YEAH!