Updates to catch up on!

Sorry it's been a few days since I've updated. When I got back to California, I just hung out with Kevin while I had him here. He flew out yesterday, so now I have time while Daniel is napping. I flew in late Sunday night so early Monday morning we had a blood draw for Daniel. His labs came back that his white blood cell count was low so they switched his anti-biotic med from Septra to Macrodantine. He has to have a breathing treatment with that, too. Anyhow, we had a VCUG and ultrasound scheduled for Tuesday morning followed up with a doctor's appointment at urology. Because we were switching the medicine and you have to be on an anti-biotic before having teh VCUG (they shoot dye up into his bladder via a catheter and then fill his bladder up. watching on an x-ray machine we see if the dye goes up into the kidney....relux and we dont' want that....or if it all comes out the way it came in!) Anyhow, we had to have the ultrasound first and then wait for hte lab results. Urine was still in the kidney, so then we just had to pray it wasn't from reflux. That it was just from the kidney not draining well. Anyhow, we DO NOT have reflux! It was such a wonderful relief to see the dye stay in the baldder! Needless to say poor Daniel's little ureter was scratched up from the catheter and he had a REALLY bad 24 hours hours. He held his urine for 11 hours! FInally I put him in the bath tub and put cold water on him! He was bopping around for 1 1/2 hours crying because he had to pee but when he let a little out, it hurt him so bad! Hard to explain that if he endured 15 seconds of pain, it would be over for a while! Well, he peed on his tub toy trains and thought that was great! (Although crying the whole time!) So he finally fell asleep and we went thru it again from 1 - 2:30 am! So asked him if he wanted to get in the bath tub and he said, "pee on trains?" So we did and he slept until I had to wake him up at 7:00 for labs this morning! He even had a little urine in his diaper htis morning. So we had our lab draws and the xenapax (pronounced zenapacks) infustion this morning. That went pretty good. We then had the breathing treatment of pentamidine (an anti-biotic to help prevent pneumonia.) That was NOT fun! I had to hold Daniel while the lady held his head and the breathing mask to over his mouth. It only took about 60 seconds but it was a LONG 60 seconds! So we are done for the day! We are hoping the white blood cell count continues to increase. I don't want to do shots! OH! Since the VCUG came out good, we are now going to have to do the MAG 3 which is a nuclear radiology test where they put a radioactive dye into his blood and it goes throughout his body. It makes it's way to the kidneys where they then give him a lassix (makes you pee....gets rid of fluid in your body) adn watch to make sure the kidneys are draining well. I don't look forward to that at all because the machine he is suppose to sit in (after they put an IV in his hand....so he won't be happy to start with!) is so big, I can just reach thru to hold his hand. He had it done at 8 months old and did INCREDIBLE! I don't think I'll be that lucky, but we'll see! I need to upload some pictures so I'll see if I have some time for that! Dnaiel is still napping! Thanks for checking us out!

Nathan-ism

This weekend was our church's General Conference. For those of you not familiar with this weekend it happens twice a year in April and October. It is where the leaders of our church in Salt Lake City, UT (mainly our Prophet, his counselors and the Twelve Apostles) give talks and we hear the Mormon Tabernacle sing. There are 4 sessions over Saturday and Sunday we watched. During the Saturday morning session, President Monson (our prophet and president of the church) asked us as memebers to pray for the countries whose doors were not opened to the church. There are some countries who have not allowed proselyting missionaries from our church to enter. Anyhow, so last night at family prayer, it was Nathan's turn. I reminded him what President Monson had asked us to do....pray for the countries who aren't allowing the church to be taught there. So Nathan starts out....."Dear Heavenly Father. Please bless the countries..." at this point he looks up at me and said, "What's wrong with the countries?" It was cute! He also prayed that if we ever go fishing and we catch a mermaid that we will throw it back and not eat it. Can you tell we watched Little Mermaid this weekend?

Weekend Update

Friday Daniel had a urology appointment. Dr. Kennedy said that they need to do a VCUG. That is where they shoot dye up into Daniel's bladder and with an x-ray machine watch it and see where the dye goes. The urine in the kidney is hopefully there becuase it's just not draining. We do not want to see the dye going up into the kidneys because that means he still has the reflux. So they are suppose to schedule that sometime for Monday or Tuesday. He wasn't concerned about the elevated creatinine level because it's probably just because the urine is in there.
Kevin is having fun keeping up with Daniel. He is just a ball of energy! We were warned of it, but didn't think it would make that much of a difference! Boy were we wrong! I fly back in a few hours and Kevin will fly back on Tuesday. So we'll see each other a little bit. I'll let you know about the VCUG when it happens this week!

Latest Update

Sorry it's been while! I am actually back in Fallon. Kevin flew over Tuesday night and I flew back here Wednesday. Daniel's labs were good from Wednesday. His creatinine went up to 0.6, but they aren't too concerned. At his clinicals on Thursday he was given the green light to come only once a week! YEAH! We are pretty excited about that. Another sign that they feel he is doing really good. I am not too sure about whether or not he is going to have labs still twice a week. I assume he will as they are still watching closely for Epstein Bar Virus and CMV (I can't remember what that stood for!) Anyhow, that is about all the news as reported by Kevin!

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!