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!

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!