Latest report

Sorry there hasn't been anything to read. Not much health wise has been happening to Daniel! Which is GREAT! I'd rather have that than a bunch of stuff to write about him! We've had a few little bumps on his prograf levels, but I thought about it today and realized I was using the last of the bottle when the levels increased. That is where all the 'stuff' settles even thought I shake it, I believe it still effected his levels because it was more concentrated down there. I've made some adjustments on that! So hopefully we'll be OK from now on.
Daniel and I have been enjoying the beautiful 'winter' here! It's in the 60s which feels like 70s due to the humidity. It actually rained the other day! A LOT of rain. (Nevada doesn't get much and it rarely lasts all day!) Anyhow, we found a walking place called the Stanford Dish. It about killed me off! VERY hilly, but the view was incredible! We could see all over the bay! Here is Daniel giving kisses to his momma! AAAAAAWWWWWWW!


Here is one of Daniel talking to his brothers on the phone. I just thought it was too cute!

Tonight was scrapbooking here at the house! I am happy to say that I am done with the first 6 months of the twin's lives. And 3 months of Nathan. My goal is to have 6 months for each child so that I can give them as Christmas presents. Ryan is the only one that has anything! So I think the others will really enjoy them! I have cut back on my readying, so now I have time for that! I believe I am on my 11th book. So averaging a book a week has been a good pace! I am ready slow down! But I have sure enjoyed it!
So here is the rest of the week. Labs tomorrow morning with a Xenapax infusion (anti-rejection) tomorrow evening. Thursday we have labs in the morning and before dinner Kevin flies in! YEAH! Friday we will be spending the whole day at the hospital because of Daniel's biopsy! So we pray nothing happens then! The biopsy (and I think I have put it before) is where others have started spiralling down hill! Then Saturday we are taking it easy as Daniel needs to as immobile as a 2 year old can be! So there will be some more updates this week! Thanks for reading!

Thursday Reoort

Well, Daniel is doing just great! His Prograf level has been a little high, so we are adjusting meds to figure that one out. We go to labs again tomorrow along with his breathing treatment for pneumonia. (He doesn't have it, it's just the meds to prevent it.) Anyhow, today was clinicals and he had his biospy changed to next Friday. 78 days post transplant. They aren't too concerned that it's not 90 post transplant. They said he's been doing so good all along that they aren't worried. So that will mean 13+ hours in the hospital. It's all outpatient but we show up at 8:30 am for 3 hours of IV hydration and then the procedure will take only about 1 hour. Then we are back to the day hosptial where they watch for blood in the urine, keep him laying down (good luck!) and just make sure everything goes well. So we'll leave about 10-11 pm they said. They said that it's kindof tricky as they roll him to the side and hope all his bowels fall to the bed so the kidney is face up and there is only skin, cavity lining and then the kidney. They use ultrasound to do everything, but there are still the occassional oopsies of hitting a capillary (sp?) or whatever blood vessels run in the kidney. So that is why they watch for blood. Treat with antibiotic and they are good. Then 1 week after that we should get to go home! So I will actually wait and see before we determine what we will do as far as stay here for a few days until the family comes over for Thanksgiving or actually go home.

Tuesday Morning Report

Well, after finally getting to San Jose Sunday night (plane was delayed 2 hours...but I finished one book and started another!) and getting to bed at the wee early hours of Monday morning, Daniel had labs a few hours later. His creatinine came back at 0.6 (0.5 is his base) and his Prograf level was 14 (should have been 7-10....this effects the creatinine level.) So we had to lower his prograf and repeat labs Wednesday morning. I hope it had something to do with the time change and getting meds sooner than normal. So we will see tomorrow!
Daniel's biopsy is scheduled for Monday, Nov 17th. I kept saying it was 3 weeks away when it is actually 2 weeks away! YEAH! That means 3 weeks from now I could be leaving RMH! YEAH! It takes a week to get the report. They look for cell rejection in the kidney and the toxicity level of prograf in his kidney. Ironically enough, the prograf is a toxin to the kidney, so that is why they start his level up high and are weaning him down to a 'safe' range. Anyhow, that is our next big hurdle is to 'pass' that biopsy. I am a little nervous becuase my friend Leah and her son Layton had to postpone their trip home and spend a week in the hosptial because he got a staph infection during the biopsy! So we'll just add that to our prayers and pray Daniel will be fine!

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.