Thursday Clinicals

Well, Daniel had a lab draw on Monday which was so good he didn't require another one until Friday (tomorrow). He had labs this morning which were LONG for Kevin (3 1/2 hours!) but turned out good. (I am in Fallon.) Anyhow, we have a date for the biopsy of Monday, Nov 17th. We are very excited as we are definately going to have the results back before the family comes out for Thanksgiving, so if the results are good....we'll go home with them after Thanksgiving! YEAH! 4 weeks from today is Thanksgiving....so we could be moved out from the RMH by then!
More good news, Daniel was approved for Make-A-Wish! So now it's just the deciding part! We kicked around a pool since Daniel can't be in water except oceans. We thought about a camper trailer, all our boyz are too big for out pop tent trailer. We also thought about DisneyWorld, but 3 of the 6 boyz wouldn't remember that and it would be over in 1 week! (But I still dreams about it!) We have also thought about a nice playground set for the kids in the back yard. So, we'll see! I guess it takes about 6 months to get everything done, so by next summer!

Weekend Update

The local paper, Fallon Free Star, did another nice article on Daniel. Here is the link:
http://www.rgj.com/apps/pbcs.dll/article?AID=/200810170137/FALLON/810170330

Daniel's labs on Friday were good. His creatinine actually went down a little to 0.4. They want it to be in teh range of 0.3-0.5 so we are good. His prograf and cell-cept levels (the anti-rejection meds in his system) are also at good levels. So we were pretty happy about that. His white blood cell count was a little low so we had to adjust his cell-cept level for that. So hopefully that will work. We have labs Monday morning. Daniel has a little runny nose and cough which makes us nervous (signs of kidney rejection) so I think I will be getting him into the Doctor's office on monday so they can look at him. Sammy was diagnosed with tonsilitis the day after they left, so I am wondering if he caught that bug! I just hope he doesn't have to go into the hospital! Kevin flies in Monday and I fly home on Wednesday. But that is about all!

Thursday Update

Well, it's been a while since I've updated. Mostly because nothing medical has really happened. I had my sister, Lora, here and then my family came for my birthday. So here are some pictures of the visits.


Wednesday night (when my sister flew in) someone donated 10 Suite tickets to Disney on Ice. So OF COURSE!, we went! Layton is Daniel's little buddy here in the picture. We had a ton of fun and great seats!


Friday Lora, Daniel and I went down to Monterey to the Aquarium. Always fun and amazing place!


This is at the Oakland Temple. Daniel was SO excited to be with Sammy! Just thought this was a cute picture!


Then of course all the boyz had to get in the picture! OK! Mom made them! :-)


We took the kids up to San Francisco to Pier 39. HAD to see the sea lions! Alcatraz is in teh back ground of out picture.


Back at the RMH there is a game room with a PS2, PS3, Wii, XBox and something else....I can't remember. But either way, the boyz were in heaven!


Furry Friends came when the kids were here. There were about 5 dogs. You can see Bryce telling a dog to sit in 'dog language'. He LOVED it!


We also took the kids to Ardenwood Historic Park in Fremont, CA. They had all kinds of animals. Here they are at the bunnies. It's a beautiful quiet place amongst the big cities. Just a turn of the century area that is preserved to look at. Tankhouse, blacksmith shop, country kitchens, etc. It was fun and relaxing!


The RMH has scooters and bikes to check out. Here we got some scooters for the kids to ride.

Daniel's clinicals went well this morning. We are cutting back his magnessium. It causes diarrhea and gas pains for him. So I am happy about that! He had his 3rd Xenapax infusion yesterday....no side effects, so that is good! We have labs tomorrow morning and then we are done for the week! Daniel is 8 weeks post transplant. We are excited to talking about his biospy already. If that comes back good, we get to go home. Daniel's is scheduled for the 21st of Nov and it takes a week to get all the results back. So we are hoping to move it up to the 19th so we can have results before Thanksgiving. And then get to go home when everyone comes out here!

Tuesday Report

Well, I ended up staying awake until midnight and then waking up at 4 am to give Daniel a Bolus feeding. That means I take the things he should have been getting thru the NG tube and put them in manually....10 mLs at a time. Total night feeding of 740 mLs. So my fingers are alittle tender today from doing that 74 times! Oh well! We'll ahve to do it again tonight because Apria (the company that supplies them) doesn't have an adapter in stock in our local store, so we are getting one shipped over night. So I'll be doing it again tonight.

We have a really good day today! Did laundry, went to Wal-Mart, clean the room up a little. My sister, Lora from Ohio, is flying in tomorrow to spend the rest of the week with me! I haven't seen her in over 5 years! My family comes Saturday nigth, so she'll get to meet Nathan, Daniel and Sammy! I was pregnant with Nathan the last time I saw her! Anyhow, we walked down town and did a little shopping at the Farmer's Market across the street. There was a fall festival here at the RMH. Daniel had a BLAST! They had so many things for him to do and see! Furry Friends came (dogs), he got a stuffed animal fish and a balloon animal. He painted a 'baby pumpkin' and went to a little petting zoo and didn't want to ride the pony that was here. But those are the following pictures.

Monday's Report

Well, I started out with labs this morning which ended up good. His levels are all good. Prograf in it's range. Creatinine still at 0.5. His phosphorus is kindof high, so we are discontinuing the sodium phosphorus. We need to get more sodium in thru his mouth because his sodium is a little low. So MORE popcorn and chips! I wish I had that diet! :-)
Today while I was changing the tape on Daniel's NG Tube (that is the feeding tube taped to his face) he was screaming and fighting and we were just having a GREAT old time! Anyhow, he moved one way and the NG tube went the other! So we made a trek up to the doctor's office to get it put back in. I refuse to do it! I kindof told Amy (our dear nurse who is probably going to ask for me to be reassigned to someone else!) that I refused to do it if it meant I would take him to the ER! I was just having a bad day and later apologized when it was all over. But him and I both cried during the whole thing! I just really don't like the NG tube! And watching them shove that thing down his nose solidified it. YES! I know it doesn't really hurt him, but I hate doing things to him that cause him stress! Anyhow, then waited for 3 hours for him to pee in his urine bag....never happened so I took the bag off. I'll bag him before bedtime! So we came back, ate and played in the play room! He loves me now! Life is good! We are about to go have popcorn and grape Kool-aid. Our bedtime snack!
Footnote: Had a good bedtime snack. Came back....got Daniel all ready for bed....went to hook him up to the feeding tube machine....NEW NG TUBE DOESN'T FIT THE BAGS!!!! The same company sent me the tube and the bags! UGH! So I called the on call ped. nephrologist and she said to give the meds via the NG tube (I have a medicine syringe to stick those in) and then I have to make sure he gets liquids thru the night! I am so exhausted I am going to have to set an alarm because unless he wakes me up (which he does that often anyhow) I know I won't wake up on my own! So we will be getting ANOTHER NG tube put in tomorrow.....I am sure!

Today's Clinical

We had clinical this morning and we saw Dr. Alexander and Dr. Conception (surgeon). FIRST....Daniel only woke up ONE TIME last night and didn't cry out in the night from nightmares! YEAH!
Anyhow, I went in prepared to 'gently persuade' them to not do the MAG3 test on Daniel. I found out last night Daniel's creatinine is back down to 0.4! Perfect! And the urine is his kidney is going away according to the Monday ultrasound. Well, they said, we have 2 pieces of good news and one bad. I asked for the good first. They said they felt they didnt' need to have the MAG3 done because everything looks good! I was excited about that. Then next news was, '"We are going to give you the bad news first.....since you don't have a pediatric nephologist near you in Fallon, we can't let you go home today." I WAS GOING TO GET TO GO HOME! Daniel is doing very well, but they don't have someone to send him back too. It wasn't too disappointing. I planned on being here for the full time. I didn't even know that was an option. But we can go to church on Sunday! I am REALLY excited about! So all in all it was a good day. I found out our little friend here, Layton, has a sinus infection and is in the hospital. Those kind of 'stay home and get better' illnesses are gone for Daniel. Atleast for a couple years.

Pictures

Kevin, Daniel & I found a cute little park here in Palo Alto.

Rich area = nice parks!

Here are more pictures of when the kids came out. Here are the bumper boats. You can see Bryce chasing Ryan chasing Daddy and Nathan chasing Comptyn! They were all really wet! Not only where there squirt guns on the front of their boats, if you venture too far to the edge (check out the back ground) you get wet under that water squirting in! Daddy and Nathan did that!
Here is the commons area at the RMH. In the back ground you can get a little glimpse into the kitchen area. Not much, though. Anyhow, it was good to have them here! 10 more days until they come back! YEAH!
Daniel peeking thru a window in the play place in back! He has his cowboy hat on from the big birthday dinner thrown for all the September b-days!
They had an African Safari here at the RMH. Daniel got to pick out a stuffed animal....his is that HUGE tiger he is sitting on and then all the kids got a mommy and baby gorilla. It's kindof hard to see as the ground is a dark colored carpet. They had crafts and snacks for hte kids, too. Sarah does all these events and she does an amazign job!
We were in Longs Drugs and Daniel decided to try on a pair of glasses! It cracked me up! Looks like a little scientist!
At the birthday party they played Pin the Tail on the Piggy!
And here is Rosie the Pony. She was a soft and VERY gentle horse the kids got to pet. Once all the kids cleared out, Daniel warmed right up to her!
That's all for now!