Friday Update

Kevin said today started out pretty good. Daniel ate a pretty good breakfast after he told him the yogurt was ice cream! They went for a lot of walks, picked up all Daniel's new meds at the pharmacy...$159 for a months worth. Hopefully we'll be cheaper here in NV! The not so good news (which is still not too bad, but we were hoping to avoid) was that Daniel got the NG tube. He'll need supplimental feedings of pediasure during the night so he is well hydrated thru the night. Blood pressure falls during the night and we can't risk damaging this new kidney! Kevin said it wasn't fun! Tried the left nostril....blood came out. (nurse is asking doctor about that one) Got it in the right and he started shaking (tramatic) and then threw up. Poor Kevin is about done! I am really praying they release them tomorrow. If they don't I am going to fly back early. (Sunday evening) Kevin's sister, Brenda and her boys are going up to see him tomorrow, so that will help boost his spirits. Other than that, Kevin said Daniel had been doing great! Joking, teasing, talking, etc. Dr. Conception said that the reason Daniel istn' putting weight on his right side is because it requires using those muscles and it will be tender and sore for about another week in a half or so. Good thing I am taking back a stroller with me! :-)

Thursday Update

Called Kevin this morning and he said Daniel's drip line was taken off last night about 11 pm. That means he is getting enough foods and most importantly, liquids to the kidney! So they are tweeking a few of the meds and then they will release him! Saturday....Sunday at the VERY latest! YEAH! We are thrilled and count this as another miracle! He was suppose to be in the hosptial 2-3 after surgery. He will be released 10 days after surgery! Now if that isn't an answer to all the prayers and fasting, I don't know what is! We have been so amazed at all blessings Heavenly Father has bestowed on Little Daniel!
Daniel finally got the On-Q ball of local anesthectics off! So that means he has his PICC line and his catheter! YEAH! So he and Kevin have gone for a few walks today. Daniel is trying to stand more. He puts all his weight on his left leg. So we are wondering if his right feels uncomfortable because of the LARGE incision on that side. Kevin's goign to ask the doctor's next time they come around. Daniel's been sitting up in the chair playing with toys and coloring! During his nap, his blood pressure fell to 88. (They want that systolic number to be 110-140....that is an adult BP and taht is what the kidney is used to.) Anyhow, they put him on a little saline drip because he didnt' drink anything while he was sleeping....obviously. So I have a feeling we might come home with a NG tube to do feedings during the night to keep liquids in him. We'll see.
But all in all, Daniel is doing great! We will be putting some Germ-X by the front door for those who visit. We are also asking anyone who has even a 'simple' cold to please stay away from Daniel. I met a boy at the Ronald McDonald House that had a liver transplant last August. He got a cold that developed into pneumonia. He spent 6 weeks in the hospital! "Simple" things to you and I will be life threatening to Daniel. He just can't fight common illnesses. So we are nervous about that, but will continue to pray for his health!
I am off to play a game with Sammy!

Wednesday Update

Well, I flew home bright and early this morning to spend time with my kids and take care of my home based business this weekend. Good flight! QUICK! So the update if from Kevin's phone conversations. The biggest news being, they got to leave the room adn go for a walk! YEAH! Let the wagon rides begin! Kevin said Daniel was just thrilled to be out! Daniel has been wanting to stand more and more. Still not walk, but stand. His legs are still really weak from not walking for over a week. But he stood for about 1 1/2 minutes today! he still has the On-Q tube in. Tomorrow morning it's coming out, we've been promised. (We heard that yesterday, too, though! I'll believe it when I DON'T see it! Har! Har! Har!....It's late and I am really tired...stupid jokes come out then! Sorry!) Anyhow, the dietician came in and talked to Kevin about Daniel's eating habits. She isnt' concerned at all about what he eats. he is getting the caloric intake. The nephologist is concerned about him going all night without a drink. The kidneys need to stay REALLY hydrated. Anyhow, I told kevin to tell him we'd get up in the night and give him drinks if we had to, if we could avoid the feeding tube. So we'll see about that one! They weighed him today and he has gained 1 1/2 pounds! That is INCREDIBLE for him! Especially since 2 days ago was his last weigh in....so 1 1/2 pounds in 2 days if AMAZING considering he doesn't eat what he's use to and things. We are excited! the kidneys are keeping the nutrients and he's starting to grow. The post transplant team nurse came in and talked to Kevin. She said Daniel can't play in any more lakes. Nothing that is standing water. Apparently the gross bacteria and things are in HUGE concentration and if he gets even a little bit of water in mouth (and spits it out) those germs would surely wreck havic on the kidney. So only oceans and rivers that the water is moving. No personal pools and only pools that we knwo are cleaned on a regular bases. I was raelly bummed about hearing that. We play out at Lake Lahontan ALL the time! So no more of that! But Kevin said they had a good day. He sat up more, almost at 90 degrees, so he could color and do a puzzle and things. So that is great! Daniel will be released probably on Saturday, Sunday at the latest. We are grateful because taht would be a 1 1/2 week stay after transplant and we were told 2-3 weeks, probably closer to 3. So hopefully no surprises pop up! So that is all that was reported to me! Thanks for reading and caring about our great little guy!

Tuesday Update

I don't have much news to report on Daniel today, which I guess is good! He fell asleep last nigth at 11 pm. I stayed with him. He woke up twice asking for mommy. Then fell right back to sleep. Had some gas pains at 4:20 am, passed them within 20 minutes, but was awake for 1 1/2 hours. So mommy and him watch "Hairspray" on TV. (cute show, by the way) and mom started another one "August Rush" (EXCELLENT movie!). So i've been awake for while! Daddy came up and held Daniel while I ran and did laundry and showered at the RM House. Ran some errands (buy some snacks and food for Kevin while he's here and a few toys for Daniel...he can't play with ones here unless they are wiped clean of all germs. I am not taking chances) So when I got back Daniel was eating lunch. He had sat up for about 45 minutes. His poor little neck and legs are kindof weak from not using the muscles, so he is slowly working his way up the strength again. Anyhow, I held him for a while. He fell asleep, mommy did, too but for just a few minutes because then a nurse came in to show us how to flush his PICC line EVERYDAY! Nobody told us we'd be doing that! I don't think I am liking this PICC line much anymore! Monday and Thursday we have to change the head on it, too! UGH! Oh well! If we can give him shots (which we don't have to do anymore!) then we can clean and flush a PICC line!
Dr. Talley came by to see Daniel. She had her picture taken with him and daddy. It's at the bottom of the email. Daniel ate really well today, played (on a lap of course) and was just himself! It's SO good to see that. Little pain meds. I believe only 2 doses of Tylenol. All over the counter stuff now! YEAH! OH! I forgot! HE POOPED! It's amazing how excited you get over a poopie diaper! Passing a lot of gas still, but his belly is really looking good. Belly button is just a little weird! So we are happy about that. They glued his incisions shut and his left side started peeling off and catching on things. That was painful! So it got cut! Daniel is meeting his goal of 1 liter a day liquid intake. He'll have to meet 1.5 liters when he leaves. Piece of cake! We will need to watch food intake, probably keep a food log. He MIGHT be able to avoid a feeding tube, but that is really rare. They want to make sure he catches up on calories. So maybe one just at night becuase Daniel does eat so well otherwise. So today went well. MIGHT be able to go for a walk tomorrow in the wagon. Kevin will be loning it for the next few days. I fly out tomorrow mornign to go home and see the kids and do my home based business. Monday I'll fly back, Tuesday Kevin flies home for about 2 weeks. They are looking at the end of the week to be released from the hospital. Which, once again, puts Daniel ahead of schedule! So I would have them picking me up from the airport! YEAH! OK...I think that is about all. If I remember something, I'll add it later! OH! My girlfriend from high school (there were 5 of us that hung out together), Nerissa and her husband Eric came by to visit. They are moving from Milpitas to Fremont in a few weeks. Anyhwo, it was SO good to see Nerissa and meet Eric! We have a great visit! At least I think we did. Thanks guys for coming by!
Here is Dr. Talley! We love her and will miss her! (We have a new 'team' now....post-transplant team.)
OK...I can't get her picture on there...I'll have to do it later!

Monday Update

WE HAVE BEEN MOVED! YEAH! As you can imagine we are thrilled to be in a room up in 3 West. That means someone can sleep here with Daniel every night. That was the hardest thing about being in PICU. That and the fact that it wasn't 'family' friendly up there. Here we have a couch like bench, recliner chair, plasma TV with on-demand movies! We can go for walks! (We'll have to track down a wagon tomorrow!) So we are doing great! But I'll back up and start from the beginning of the day.
Remember Dr. Usha and how she said Daniel didn't have gas? WELL...when Dr. Conception (surgeon) came around this morning I talked to him about it and he said, "Well, let's just do an x-ray and see what it is." Needless to say, mother's instincts beat out 8 years of medical training! It was gas! He's been on a stool softener for a while and moving a lot so it's been a lot better for him. He didnt' complain at all today about it.
Daniel got out his JP tube which was the GROSS drain tube. I happened to leave to use the bathroom and came back when it was done! Good timing on my part! I did that on the 2 IV lines yesterday, too! Didn't plan any of them! Glad dad is here! :-) So all that is left is his On-Q line (which is like angel hair pasta small...it is the local anesthetic to the new kidney area) and it is suppose to come out tomorrow! YEAH! We'll have a PICC line and catheter! And those we'll leave the hosptial with!
Daniel's swelling is WAY down! He got another lasix in the morning and so he looks like his old self....ALL over his body! ;-) He ate a really good lunch and dinner. Breakfast they brought he was too keen on, but I got to order pancakes and sausage for tomorrow morning, so he should eat well! He was held all but probably 1 hour of the day and as of right now it's been 13 hours we have been here! So it's great to hold him!
Here is a picture of Daniel eating french fries dipped in ketchup! Something he had to stop doing about 3 weeks ago because of the potassium contend! He was SO happy to eat them! And it's so great LET him eat those things! No more food restrictions! YEAH!

Some pictures!

This is how Daniel looked pretty much the WHOLE time daddy got to hold him today! (For the first time, by the way!) He LOVES being held, because he isn't in his bed! He keeps asking to go for walks. (We do the wagon, don't forget.) So when we are moved then we'll track down a wagon to stake claim on!

These are some balloons that Daniel just went ga-ga over! They are from his grandma Laura in Michigan. It came with a little Prince Charles Spaniel (I believe is what the tag said) stuffed animal. He was cute and we named him Stanford. Very fitting! We've had too many doctors and nurses to pick a favorite. We thought of Lucille (since we are in Lucille Packard Children's Hospital) but it is definately a boy dog! DOesn't look feminine in any way! Thanks g-ma Laura! He enjoyed hitting daddy with the balloons for a good 15 minutes! And good not to pick latex. It's a latex free hospital due to allergies.

Aunt Brenda, Uncle Moe, Darrin and Derek came up! Here is a picture...notice Daniel STILL in a bad mood as they were leaving!

Notice arms stretched HIGH above the heads! Maggie is our #1 person today! She took out the neck line and the left wrist line! Daniel got a sponge bath and was LOVING life!

A few other things I failed to mention about today (I think!) was that his potassium, phosphorus and magnesium are doing good. The levels are at or almost to where they need to be. So now they just wait until the kidney starts storing them and his levels go high...then they can cut back on substituting them into his blood. WAY happy day because no drip attached to PICC (pronounced PICK) line! So there are the pictures! Now you can erase those last images of Daniel in your head!
Kelle is doing good! Stopped by this morning only as I was too busy this afternoon. (Sorry Kelle!) She had a few nerves that were cut (common thing I guess) and she was in a LOT of pain during the night and today. But the pain management team came in, gave her some lanacaine (sp?) and she was instantly better! She'll have to take some every day for 2-3 months while those nerves heal, but she is happy with that becuase she can still go home tomorrow! YEAH! Remember, if you want to email her send it to herzogkj at hotmail dot com. (I had to type it like that because spammers pick up on it or something!)

Sunday Update

I didn't get to report this morning as we were a little 'late' (by our standards) the the hospital. Daniel didnt' fally asleep until 12:15am and we were there until he did. He was full of gas and liquids and just miserable! We slept in until 7:40 scurrying around and trying fast to get to his side because we knew he'd be awake! He looked a TON better this morning! He had not as big of an abdomen and 'man area'! :-) His legs are a lot more normal looking by his standards. He wouldn't eat breakfast or lunch, but drank water. The eating worried us a little, but then again, look what happened last time he ate! He was still uncomfortable, trying to boof and things, still produced nothing after the suppository last night. So (our poor nurse) I bugged her enough and told her I'd go bug the doctor, for a stool softner and an enema! He got both! YEAH! However he pushed out just a little poop, some gas and was comfortable for a while. So that was a relief! We read books, Kevin held him for a while (I'll put pictures on in a bit, when we get back to the House.) and even blew bubbles! He was his old self! It sure was great to see! Dinner came and we thougth he wouldn't eat....but he had.....Mac-n-cheese! He couldn't shovel it in fast enough! He LOVES that! So he did good for dinner. But now the gas is building up again. So the doctor's are currently working on a solution. The is getting the last of his 2 IV's in. The one in his neck and the one in the back of his hand. He will only have his PICC line in (that he has for the 3 months we are here for lab draws) his JB line (drains fluids but that is suppose to come out tomorrow) and his catheter (which will come out in 3-4 weeks!) So he will be A LOT easier to move....right now it's a 2 person job and feel a lot more comfortable! He has a brace thing on his left wrist so he can't bend it because of that IV. So overall, today was a good day. He is getting back to his old self! Joking, coloring, talking to us more and more.
Brenda, Moe, Darrin and Derek came up and brought us dinner and visited a while. It was right as he was waking up, so he was REALLY grumpy! I felt bad. It was great to see them, however. Especially the non-cafeteria food! I can't wait to get to the House and be able to make foods! His pain meds are getting less and less! He only had 1 dose of Tylenol with codine and 1 dose of just Tylenol. He did have a IV injection of the "A" drug I can't remember the name to! I haven't seen the way it was spelled, so I can't remember it! (My brains works weird!) Anyhow, so pain meds are decreasing which, to me, is a good sign! They are working on a room upstairs for us. There hasn't been one open up, so we are still staying put! I think that is about it! I left my book downstairs that I write notes in all day. I'll add pictures later and anything I left off! Thank you guys for all your thoughts, prayers, emails and messages. It is GREAT to hear from you and I wish I had time to respond to them all.