Thursday, January 26, 2012

No good news...

Anthony got the results of his blood work today while he was at dialysis. His creatine level was 9.9. Normal is 1. Needless to say we're a little disheartened. Anthony has truly felt better for the last few days. Yesterday he felt really good and was more like his old peppy self. 
So tonight we just laid low at home and ate some Chinese food. Anthony hasn't been very happy today, and everyone is just a little on edge. Lincoln didn't nap well today and wasn't totally happy this afternoon either. It's just been one of those days. 

Tuesday, January 24, 2012

Dialysis...Round 2

Anthony went for dialysis again today. This time he's at an outpatient facility. I've been at work the last two days since there's really no reason for me to stay home. He's just been here hanging out and resting. Today his dad drove him to Morganton for his treatment, then picked him up when it was over. The good news is that we expected it to last for 4 hours, but they only kept him for 2! The nurses said they always start at 2 hours and bump it up by half an hour each time until they reach 4 hours. That's quite a relief. He packed a bag of things to do: books, his Kindle, my iPod, snacks. Not sure how much of any of that actually got used but I'm pretty sure he said he read and played games on my iPod. They also drew blood again for testing today and we should have the results by Thursday. This will tell us what his levels were between the Saturday dialysis and today. Hopefully they're perfect!
So for now his dialysis schedule is Tuesday, Thursday, and Saturday at 11:30am. But today he got his schedule changed to the 7am time, and he has to be there at 6:30!! But then it's not the middle of the day, and depending on how he feels he could go into work after lunch. Even after 4 hours of dialysis he'd be done by 11-ish and have time to eat and get to work at 1. Just all depends on how he's feeling and what he thinks he can do. 
Tomorrow is Wednesday, January 25 and he's planning on going to work in the morning. He's going stir crazy in the house and I'm sure he'd feel a little more normal if he could get back in a routine. He's only going to work for half a day and they're only giving him 4 patients. He'll just have to remember to pack his medicines and to take his time. Not over do it. We'll see how it goes.
Over all he's doing well. He's tired, which is to be expected. Not only is it physically tiring with the dialysis but it's also emotionally draining to know you're sick and not really be able to do anything about it. He says the worst part right now is that the place near his shoulder where they put in the catheter is really sore and hurts a lot. He's been taking Tylenol for it but that doesn't seem to be helping very much. So he decided yesterday to try some ibuprofen as well and that helped. However, today at dialysis the nurses told him he can't have ibuprofen because if his kidneys can't filter it out he could overdose! So, Tylenol it is. He's resting a lot but still managing to help out when and where he can. He's playing with Lincoln, changing diapers, being the sweet husband he always is. He just has to move a little slower and sit down more often.
Thank you so much for your messages and comments. They are very dear to my heart. Know that each one of you reading this is special to us and we are so glad you care enough about us to keep up with what's going on.  I will try very hard to be diligent with this blog so you all will know where we are in the process and how we all are doing. Please don't stop praying.

Sunday, January 22, 2012

The first day of the rest of our lives...

Where do I even start? I know there are many of you out there who are wondering exactly what's been going on this week. I didn't post all over Facebook because Anthony is a pretty private person. Since this is our family blog and I'm not sure anyone really reads it anyway it's going to be documented here.

Wednesday, January 18 Anthony had an appointment with Dr. Todd Arensman, our family doctor. He had been feeling bad for a while. He was finishing up a 10 day dose of lots of antibiotic, Levaquin. He still didn't feel right and was really really tired. But he's been tired for a while, and who's not? He works 40+ hours a week, has a toddler, rides his bike, and his wife is pregnant. How could he not be tired? Anyway, he actually went to the doctor cause he thought it could be mono or an ulcer or something. He had been nauseous for a few days and hadn't slept well in a while even though he was tired. Todd just told him to come in for blood work and said he'd call him back with his results. 
Thursday, Jan 19 Anthony calls me at school, on the school phone. That's never good. It's like 10:40am and he says "Don't freak out, but Todd called me and my blood levels were so high that he wants me to go straight to the hospital and be admitted for more tests." I'm not gonna freak out! Thankfully, I have a wonderful 2nd grade team who took care of my kids because I just left. I had to go with Anthony. There was now way he was going to the hospital without me. Neither one of us were very concerned and he just wanted to get out of there. 
We sat in this tiny room at Frye Hospital waiting and waiting, and waiting. They drew blood, lots of blood. We sat and waited some more. They came for an ultrasound of his abdomen and a CT of his chest. I was allowed to sit in there while he had his ultrasound. I thought that was only fair. He has seen my insides plenty of times! We had an ultrasound tech who was training but she was very talkative. Probably more than she should have been. She found his spleen and liver pretty quickly and showed them to us. She tried to find his kidneys on both sides and she couldn't. That can't ever be good. She left the room to get a more experienced technician. This new tech found his right kidney pretty quickly, but it was rather small. At least to my untrained eye. This tech wasn't talking. He flipped over to look for his left kidney and the picture she found was very different. VERY different. In fact, I couldn't even see anything that looked like what she had just measured for the right kidney. She measured something, but it didn't look like anything to me. She started asking questions about why he was in the hospital...was it kidney related...had he been in an accident...had he been sick. She said she'd been doing this for a long time and neither one of his kidneys look normal.
They wheeled him to CT to wait for his scan and we're both very quiet. I tried to explain to Anthony what I had seen on the screen but we obviously didn't know what any of it meant. At this point I'm getting really nervous and I can tell Anthony's solid interior is cracking. He's starting to be extra jittery and wiggly. 
We go back upstairs to wait for new from the neferologist. Finally, Dr. Paul comes in and tells us that Anthony's test results are extremely high and that according to his tests Anthony was in acute kidney failure. Probably exacerbated by the high dose of antibiotics he'd been on. Good news is that means it's reversible and he needs to flush his system and his tests should come back with better results. Maybe dialysis a few times just to kick start his system and he'd be good. We were a little upset by this news, but felt very good that it was something with a pretty easy fix. Anthony asked a billion questions, of course. We both asked for the results of his ultrasound and his CT scan. Dr. Paul hadn't looked at them yet but he said he would go straight to look at them.
I know this is getting long, but here's the deal.
Dr. Paul comes back about 30-45 minutes later and Anthony's parents had come to visit and were there with Lincoln. Dr. Paul asks if he can speak freely and in front of everyone. We didn't think anything of it. He starts his talk with "I've been doing this a long time..." That's never good. He said Anthony's kidneys weren't functioning. Almost at all. After looking at the ultrasound pictures he said his left kidney is pretty much shrivled and useless. His right kidney is very small and not doing much. We have no idea how it happened. It isn't something that happened last week, or last month, or even last year. There had to be some kind of trauma, or something to cause it, but we can't figure it out. So Dr. Paul stands there telling us that Anthony is now in chronic kidney failure, it's not reversible, and he's going to need a kidney transplant.
Out of nowhere.
He just didn't feel good and was tired.
And now he needs a new kidney?!
This news was more overwhelming than I can say. We were all shocked and didn't really know what to say. It felt like a giant rock had just landed on my chest and I couldn't breathe. How could this happen? He's so active and healthy. This can't be right. 
We struggled through the evening and Anthony enjoyed his first night in a hospital. We sat for hours on Friday, the 20th waiting to hear what was going to happen. He had a porta-cath inserted into his heart above his clavicle for his dialysis. He then received his first dialysis treatment. 

The first of who knows how many.
Luckily a sweet church member was his dialysis nurse, Alice Lackey. She showed us the machine, what it does, how it works, and what the process is really doing. Needless to say this was not one of either of our finest moments. It's quite scary to see your love tied to all those tubes, wires, and machines. It's a very scary sight. And when you know he, too is scared it only makes it worse.
We didn't know what to expect. He was on dialysis for 2 hours and was going CRAZY by the end. He's not really one to sit still! Then the doctor comes in and tells him tomorrow's treatment will be 3 1/2 hours, and then the rest of them will be 4 hour treatments. WOW! After dialysis he had better color and felt a little better, enough to eat something. He hadn't eaten in at least 2 days. After that he was extremely light-headed, and very tired. He needed to rest. He's never a good sleeper but he actually said he slept well. However, he slept from about 8pm-4am and was wide awake! I had been coming home at night with Lincoln so we could all try to rest.
He had dialysis again on Saturday morning and felt a little feisty afterwards. He texted me about 4 times in 10 minutes telling me I needed to hurry up and bring him some KFC mashed potatoes!
Thankfully he was finally discharged on Saturday afternoon. He was scheduled for dialysis Tuesday, Thursday, and Saturday until further notice. He now has to decide what to do. He can continue on dialysis until a kidney becomes available. Or he can have a different kind of catheter inserted to his stomach to do dialysis at home...and still continue regular schedule and work and whatever he feels like he can do. 
This is all just an initial plan. We're believing in God for a miracle. His right kidney could get it's act together and come back to life. God can heal him. We believe that. 
Otherwise, he's on dialysis until something else happens.
What a ridiculous weekend. We've been overwhelmed, exhausted, and so much more. We've been visited, and prayed for, and hugged on. 
So today we've rested. Anthony really wanted to go to church. We made it to church and then lunch before he got really tired and just wanted to be home. No visitors today so we got to be lazy. Well, as lazy as you can be with Lincoln around. He's not working this week because of his tiredness and the dialysis schedule. He's hoping to go back a while on Friday and then see how it goes and how he feels after the few more dialysis treatments. If they don't make him crazy tired and light headed he feels like he can work next week. We shall see.
Thank you for all of your prayers. Please don't stop.

Tuesday, January 17, 2012

A big weekend

Saturday we spent the day cleaning...and cleaning lots! My friend Michelle's family came to pick up the bedroom suit from Baby Girl's room. It's very helpful to have that room cleaned out finally. Which meant we were able to put Pumpkin's crib together!
 And so it begins! Lincoln was determined to help. It was sweet for about 5 minutes...then it was realllly hard to manage! He couldn't stand all the little hardware pieces laying in the floor. And he kept calling the sides of the crib ladders and trying to climb them. Then he tried to ride his scooter up and over everything. He's CRAZY about speed bumps. Everything is a speed bump. He makes everything into a speed bump. He ended up getting popped because we kept telling him no over and over and over. I finally put on Mickey Mouse Clubhouse DVD in my bedroom and that kept him busy for about 5 minutes!

Anthony was very studious with the directions. But no matter, we ended up putting the back legs on with the holes pointed out instead of in! We had all 4 sides together before we tried to put the mattress support in and realized it wouldn't fit. You'd think with this being the SECOND crib we've assembled that we'd know what we were doing. I guess not! We also had a very intense debate about whether or not the stupid stickers (and there were lots of them!) should go towards the mattress or out towards the room. I said there was NO way that many stickers should show! Turns out I was right. Phew!

Finally fully assembled and dressed. We even had drama with the crib bumper. We bought a 6 piece set that included a valance, crib sheet, dust ruffle, bumper, diaper holder, and comforter. So I put it all in the washing machine. I read the instructions and they said machine wash gentle, tumble dry low. I made it through the gentle cycle but when I pulled the bumper out there were torn places on the top and what almost looked like burn marks all over the front. Several of the tabs looked like they were about to come off. Needless to say I was NOT happy. I nearly cried when I got it out! But no worries, Babies R Us really came through and I got a brand new questions asked.

We're doing a nature/tree theme in her room. The owls just happened to come with the tree! It's cute though, don't get me wrong...but I picked it for the tree on the comforter. 

Still unsure about the placement. We've got 2 more furniture pieces coming in. One of them is the changer/dresser with a hutch on top. So it's going to be a big piece. Not sure where the best place will be for that. Two windows as you can see, the wall to the left hosts a closet door, and the wall to the right behind the Appalachian Chair (thanks Anna) is the only long solid wall. It just also happens to be the wall that is shared with our room. And is directly where our headboard is located. When we had people over in that spare room and their headboard was adjacent to ours we could hear everything they said. And the one time we were in there painting and Lincoln was sleeping on our bed we woke him up while talking. Not sure that's a good arrangement. What if our tv is on? What if we're talking? I would hate for her to wake up every time we're in our room. We had contemplated putting the crib cadicornered between the two windows, but we feel like that just wastes a lot of space. So when we get the rest of the furniture assembled we'll figure it out. I'm sure we'll move it around like 87 times. ~ Note: That should be read: Anthony will move it around like 87 times!

Other thoughts/events

Lincoln blew us away this weekend. I know I just posted about his language development and how fabulous he is, but I can't help bragging just a little bit more. On Saturday we had what I would call a major breakthrough...Lincoln called himself Lincoln for the first time!! He's always said me, or baby. Baby's room, baby's truck, baby's house. But Saturday he actually called himself Lincoln. Hello self-awareness! What a sweet sound! No he can't say it correctly, but if you pay attention to what he ways you can hear it. Those L's sure are hard to pronounce for little people. It sounds more like Wincworn. But it's precious!
Also, while counting toys with Daddy on Sunday he counted to FIVE all by himself! No kidding! He just started counting...and he didn't stop. Neither Anthony  nor I had ever heard him go past 3. He's been counting to 3 for a while. Everything we do it seems like gets a count of 3. But out he came with 5! Who knew?!
And as if that wasn't enough to blow your mind... While I was getting him dressed on Monday morning he noticed I was wearing my ASU shirt. It spelled out Appalachian State. Like he always does he points to the As and says A. But for the first time he pointed to the H and said "ha." It took me 2 or 3 times before I figured out what he was doing. The fridge phonics really paid off!! "Every letter makes a sound H says ha!" Wowey zowey! This kid is amazing and wonderful and so much fun.
I'm beginning to get a little nervous about adding another one to the mix. I almost feel like I'm letting him down because I'm going to be taking so much attention away from him. He's gotten our all for so long now. What's it going to be like when he doesn't get it? When he has to share us? When he has to wait to play with me until I finish feeding Sissy? I love him to pieces and would spend all day every day with him, and it makes me sad to know that this baby will probably break his heart just a little. I'm hoping it goes smoothly.

We're closing in on 31 weeks now. I can't believe it's gone this fast! At the doctor's last week all was well. I'm up to 2 week appointments now. Hooray. I saw Val, the nurse midwife, and she still says she thinks the baby is "petite." She says I don't look 30 weeks pregnant and the fact that I've gained so much less this time than with Lincoln and that I'm just belly leads her to believe we've got a smaller bundle of joy this time.    I'm Ok with that! I've only gained 11 1/2 pounds this time. I looked back at my belly book for Lincoln and at 30 weeks I had already gained 28 pounds! What a big difference! I've not really done anything differently this time. I haven't even exercised like I did in the beginning with Lincoln. But I think chasing after a toddler and still working full time, and all the household duties combine to make a great workout. Who has time to sit and put their feet up like when I was pregnant before?! HA! 

Hello belly!

Well I think that was all of our weekend fun. I know I still haven't posted about Disney or Christmas. I haven't forgotten...I've just been putting it off! Maybe by the end of the week I can get Christmas together. I'll at least post a few pics of the sweet boy on Christmas morning with his Choo-Choo train! What a stinker he is. I sure do love that boy. And my husband is pretty great too ! :)

Friday, January 6, 2012

Just really quick...

While I'm thinking about it I want to write down a few of the wonderful things that Lincoln is doing! I'm so afraid I'll forget it all. With the pregnancy brain and the Mommy brain going I surely can remember nothing!

When we went to the doctor about 3 weeks ago Lincoln weighed in at 27 pounds. He's being weighed on the big boy scale now, he doesn't have to sit on the baby scale anymore. He's a pretty good eater, when he wants to be. I'd have to say that right now his favorite food is spaghetti. That boy can sure put it away! We ate at Olive Garden the other night and I think he had at least half a breadstick, half a bowl of my salad, and 1/4th of Anthony's bowl of spaghetti with meat sauce. He just kept asking for more. And yes, you read that right... Lincoln likes salad. But only Mommy's salad with dressing. He doesn't like it dry like daddy! He's still a big fan of macaroni but he loves his "eatmeal!" We'll pass by McDonald's and that's what we hear! Hillarious! He sometimes asks for nuggets, and he's really enjoying yogurt covered raisins right now. He still eats plenty of fruit: grapes, fruit cups, apple slices. He still loves yogurt and the squeezy pouches of food. If he sees those in the store it's almost an automatic. He wants it, and he wants it now!

Lincoln is so very polite. He says thank you every single time you give him something or do something to help him. He also asks for things very nicely by saying please. I LOVE this. So many children, much less 21 month olds, are rude and fussy and whiney. Not Lincoln. It's please, thank you, and a sweet smile!

Speaking of things he says...he's talking alllll the time! He's actually saying three word sentences now!
It seemed like really quickly we went from just naming things to everything having a descriptive adjective. So now instead of just truck it's 'big truck' or 'red truck' or 'Daddy's truck.' Not just choo choo, but 'choo choo train'  or 'big train' or 'baby's train.' You get big everything...and baby lots of stuff. Baby's fourwheeler (a battery operated ride on toy from Nana and Papaw for Christmas), baby's room, baby's train (a gift from Mom and Dad for Christmas). But quite suddenly, like right before he went to Disney World, HUGE post on that to follow, he started belting out 3 words at a time!
I need help!
Don't want that.
I need down.
I get up.
I got it.
I need more.
I need help is probably his favorite saying. He's gone from Mr. Independent to "I need help!" everything. He's realized when he asks for help, he doesn't have to figure things out on his own, we'll come to help him. So we've stopped "helping" so much to make him work it out for himself. But we hear that phrase a lot.

He's really started talking about people when they're not around. While we were in Disney and on the airplane he would see people that reminded him of his friends. Several times we heard EE, for Erin, or Anna. We also heard Nana and Papaw a few times. While we're at home, or even when we're out and about he'll just suddenly say "Nana's house." I'm guessing that means he wants to go see Nana! He'll talk about Papaw's truck, or Nana's car, or Grammy's car. He's realizing those people love him and spend time with him and he wants to see them too. It's very sweet! Just don't mention Nana's house until you're ready to walk OUT the door, or that's all you'll hear until you do! :)

This language is just amazing to us. He's not even two and we understand about 95% of everything he says. And so do other people. It's not just us being around him all the time. Many other people have visited with Anthony's grandmother's passing, or just people that Toni & Carroll see out and about regularly and they understand him, too. I think it's awesome. I feel like he's quite advanced in his language, especially for a boy. You always hear that girls talk faster and are more understandable than boys. Certainly not the case with us...he's been jabbering away about things we could understand for months and months. I'm completely convinced that our baby sign language had a huge role in this. It helped us form meaningful communication so early that he just learned how to talk to us. We never let him fuss and cry over what he wanted, he always had to say it or sign it to let us know what he needed. He still has some words that come out wrong so he uses the sign at the same time. 'More' is almost always signed and spoken, and so is 'outside'.

He knows almost every animal sound there is, now we're working on animal names. It's ok to see a cow and moo, but he needs to know that it's called a cow! I'm not sure if he has any idea what's going to happen come March. He obviously knows something's going on because that bedroom has now been cleaned out and painted. He loves to run around in there. It's is new favorite place to take his toys and play.  I wonder what it'll be like when all of Sissy's furniture gets here and it's not so open and fun anymore!? If he sees some cute shoes or a little dress we've bought he'll point and say Sissy. And if you ask him where Sissy is he'll point to my stomach. But I'm fairly certain that he has NO idea what any of that means. He loves babies and just wants to love on them and kiss them. Baby Zoey is always loved and hugged and kissed and petted when he's with her. He says "hug" and "hold me" when he sees her! I'm hoping that will continue when baby sis gets here. I'm afraid there will be some jealousy....

Love my crazy little man. He's so amazing. God is so good and we are truly blessed!