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!