Wednesday, February 29, 2012

Something new

Anthony is feeling good. He's been on his bike twice in the past two weeks and is planning on riding again in the beautiful weather on Thursday. He's got energy, he's a little more feisty, he wants to play with Lincoln when he comes home now instead of just sitting on the couch to rest. It's exciting that he's feeling like his old self again. He can't quit talking about how much better he feels. And Monday he went back to Dr. Bast in Lenoir and had the catheter for hemodialysis that was in his heart removed. One less thing to be hanging out of his body, and one less thing for Lincoln to fall into on accident. He showed it to me and it's literally a hole in his chest! They stitched it up on the inside somewhere, but didn't do anything else. He's not even covered in gauze, just Opcite...this clear plasticy sticky stuff. Weird. But last night he took his first REAL shower since January 20th! That was one long month! 
So the new thing is manual dialysis at home. Instead of using the machine every night he has the option to drain and fill several times throughout the day. So he decided to try it this weekend so we could spend a few nights without the buzzing and humming of the machine. It's the same basic idea: he fills up first thing in the morning, dwells for several hours and then drains himself. He refills again and dwells for several hours and drains again. He's supposed to get a total of 5 exchanges a day. That includes being full overnight. But it also means not being hooked up to anything, anytime! And no sleeping beside that machine. He can get up at night time if and when he needs to. It has less waste because he's using less supplies than he uses with the machine. The only downside is that he's gotta figure out how to do an exchange during lunch at work. He'll have to take a bag of solution with him and keep it warm. It's supposed to be body temperature when it's put in. He's not figured out yet how to keep it warm and store it at work. We timed it this weekend...from completely drained to completely filled takes right at 20 minutes. He only gets an hour for lunch, if he's lucky. So he'll have to eat at work, or use those puppy dog eyes and get someone to bring food back for him! 
He really liked this process this weekend. He said that he can tell it makes him feel better than the machine even did. It's more convenient because he can drain and fill when it's most convenient for him, as long as he gets enough exchanges for the day. It's also very nice that the night time is calm and quiet. He placed his order on 2 weeks from now we'll get another giant shipment of medical boxes to fill up the garage. We're reveling in today, because they just came to pick up a huge bunch of boxes that he didn't need. The basement is sooo empty! It won't be for long, but it's a nice feeling for the time being. 

In other news I went to the doctor yesterday. We are 37 weeks tomorrow!!!! I was 50% thinned out and 1 cm dilated. Last week I was only 20% thinned. I guess the contractions I've been having all weekend and yesterday are doing something. I don't think this little one is going to make a late appearance like her sweet brother did. I'm OK with that. The end of this pregnancy has been very different than Lincoln's. He didn't cause any problems or make any trouble. She's very squeezy and I've got contractions quite often, she's in a different position than Lincoln and just feels uncomfortable. I'm pretty ready to get this show on the road. Not to mention it would be just fine to go ahead and be at home. Anna is on call for the whole month of thankfully she'll be available no matter when Sweet Girl decides to make her appearance. Nana is on Lincoln duty and will swoop in to take care of little man. Erin said she'd move in with us if we needed her to, depending on Anthony's health and how much he can help. So I feel like I've got all my bases covered for now. Although, I just realized that I've packed a bag for me and Sissy...but not for Lincoln. He'll need clothes, shoes, diapers, pajamas and such for his Camp Nana time. Silly me. I'll have to get that together tomorrow. Then we'll be ready.
Her room is almost finished. I ordered her tree, but it's coming from Israel so it's not quite here yet. I can't wait to have that up. It'll feel more complete then. I'll take more pictures when that gets put on the wall. are a few pics from Disney, since I never did get around to that post!!

Disney is so fabulous for small people! It's so nice there are so many things that even tiny people can ride without the height requirement. This is Lincoln and me in front of  Nemo's The Seas. Very cute ride.

This kid loves Mickey Mouse!! He was so patient and waited in line at the Character Spot to see all of his favorite friends. He just kept saying "hug, Mimey Mouse!" Sooo sweet! Then he just had to touch him and hug him and kiss him. He was sad that we had to leave!

Rainforest Cafe is adjacent to Animal Kingdom so we hit that up for lunch on New Year's Eve. So cute!

Daddy and Lincoln riding the little Dinosaurs at Animal Kingdom. Lincoln loved it!! In fact he cried and cried and cried when it was over. We finally got him to talk to us instead of screaming to let us know he wanted to ride again. So he got to ride it again!
Next time we go we'll have two! What an amazing thought! I'm SURE it'll be a while before we take the both of them to Disney!

Sunday, February 19, 2012

One Week On PD

So Saturday night marked one full week that Anthony has been doing peritoneal dialysis at home. Here's kind of how our week went.
Saturday, Feb. 11: This terrible machine is the WORST sound we've ever heard! Every time it came on it seemed to rattle the room. We spent most of our night lying away wishing it would stop making so much noise. It had several problems and sounded a VERY loud alarm twice. It was very frustrating, nothing like that had ever happened while Anthony was at the clinic last week. It literally felt like we had a newborn at home again. We slept about 45-50 minutes while he was "dwelling" and then we laid awake listening to the cycle for about 20-25 minutes. Miserable...that's what it was.
Sunday, Feb. 12: VERY similar to Saturday night. The only difference is that there was only one alarm. Still a terrible awful noise.
Monday, Feb. 13: Anthony got very upset while setting up his whole system. It wouldn't make it past step 1. He tried several different things to make it work and then go so mad he just wanted to quit. He called the 1-800 number on the machine and together they realized the door latch wasn't noticing that the door was closed, so it wouldn't cause the suction and it wouldn't even get started. I have to say this was THE best night! Because the machine was broken Anthony didn't do a treatment so we slept like angels! Who knew it made so much difference to have quiet!
Tuesday, Feb. 14: Happy Valentine's Day...we got a new dialysis machine! But this one is sooo much quieter and much better. It's really just a low hum instead of a fierce rattle. We didn't sleep wonderful, but we did manage to sleep during his dwell time and make the exchanges more tolerable.
Wednesday, Feb. 15: I actually slept through the first exchange. Very promising!
Thursday, Feb. 16: Pretty much like last night...getting used to the new sounds.
Friday, Feb. 17: I slept through the first two exchanges..then the alarm went off. Something about the drain line. Anthony got it fixed and we settled back in.
Saturday, Feb. 18: Not a good night...the alarm went off twice. The machine wasn't recognizing his second bag of solution and so it wouldn't stop making noise even during the quiet dwell time. It was very frustrating and Anthony eventually bypassed the last exchanged and got it to drain just so he could unhook it and turn it off. It gets so hard to handle something new when it's not working quite the way it's supposed to. Or the way it's always worked before. It makes it even harder to realize this is something we're into for a while.

Overall this is working. Anthony went to work all week last week on a regular schedule. His work is fabulous and they are really protecting him, so they kept his schedule rather light. Tuesday was his first day back and he was very tired when he got home...just from being up and around and working for so many hours after being home and tied to a machine for over a week. Friday he came home and was in a very good mood, wasn't tired and felt good. He's generally feeling better. And after that first night of no treatment he could tell he wasn't feeling as well, his joints and bones ached again. This truly is helping and is making him feel better physically and is helping him sleep better and not be so tired. If only we could finally settle into a routine with this machine and get it figured out to an art so that it doesn't keep Anthony awake, or doesn't alarm.
We still have good days and bad days. Both physical and emotional. But we're hanging in there, sticking together, and continuing to pray.

Thursday, February 16, 2012

35 Weeks and Counting!

I CANNOT believe how fast this pregnancy has gone! It's amazing to think back to Lincoln's and remember that we were counting our lives by how many weeks pregnant we were. Everything was measured in baby time. Now we have to stop and think about how far along we are...funny how life changes. We've been so busy with everything else going on that I haven't posted about me or the baby or really even Lincoln lately. So I thought I'd take a little time tonight to remember a few things.

Last doctor's visit: Feb. 9 with Dr. Miletich (my favorite!)
Weight gained: 0 lbs
Total weight gain: 17 1/2 lbs
This is fabulous! At this stage with Lincoln I was pushing +35 pounds!
Belly measurement: 33 weeks
Heartbeat: 150s
Position: She may or may not be head down. She was head up during our fun 3-D ultrasound 2 weeks before and I'm not totally sure she's turned yet. Dr. Miletich felt like she was probably head down now, I'm not convinced.
Estimated size: 4-4.5 pounds, about the size of a pineapple
Next appointment: February 22 with Dr. Harraghy - Now I'm down to check-ups each week.

We had a very interesting day yesterday. I was at school, of course, when I started feeling some very uncomfortable pains quite low on the belly. It didn't really matter if I sat or stood, it was uncomfortable and made me unhappy. As we went in from recess I began to feel like it just wasn't right. She might have moved down, but shouldn't be pushing on me like that. Then I realized that it wasn't really a constant pain, but it went from uncomfortable to realllly uncomfortable and then kind of waved back to uncomfortable. It wasn't regular or timed but they were unhappy feelings. I walked down the hallway to talk to some who is pregnant at goes to my doctor, and one who is a new mommy. I thought maybe Abby might have another number for our office since they were on lunch and no one was answering the phone. Lauren started just talking to me and asking me questions and then started timing the really unhappy part of the feelings. It was about every 5 minutes. Abby finally got a hold of the pager number for the doctor and Dr. Harraghy called me back. I described what was going on as best I could. She told me to go home if possible, drink as much water as I could hold, take a nice warm bath and put my feet up. My principal walked in the room just as the doctor was telling me these things and was very concerned. Thankfully we arranged for Lauren to drive me home, everyone was being overly cautious!
So Lauren drives me home and gets me settled. She looks at me and do you have your bags packed and ready if you have to go to the doctor or the hospital today. My  mouth hit the floor! Well no! Of course's not time for that yet! We've still got 5 more weeks! Sweet Lauren starts talking to me about what kind of things we might need to stick in a bag, just in case. So we wandered around Sweet Girl's room gathering tiny clothes, looking for blankets, pacis, socks and such. When I realize that our little pacis, all the socks we have, and the little onesies with foldover hands are all still in the building packed away in Lincoln's stuff. Not only that, but so are all the other things I had meant to get out and start getting ready. Not one receiving blanket has been washed, and I've only washed 3 or 4 newborn outfits...nothing else! Lauren just smiled and said it would be fine and we started putting things in a bag. We managed to throw a few things in a bag for me, too. How stressful and hectic! Totally unprepared!
Thankfully, by the time Lauren and I had packed a few things and I had run my tub full of water I was feeling better. I had already drank a full 24 oz Tervis Tumbler and had filled it again. All was well with the world. I soaked in the tub, got out and finished a book on the couch, drank more water than anyone really should, and then pottied alot for the rest of the day! But it was really nice to put my feet up and be home by myself for a little while. I'm never here when no one else is home. It was quite nice!
So now we're just hoping and praying that she decides to stay in a little longer. I mean, I wouldn't mind her coming a week or two early to separate their birthdays a little, but 5 weeks is a little too early! We're not quite ready for her to be here yet! 
We did get her nursery furniture finished. Erin was in town this week and came to help Anthony carry heavy things upstairs and put the last piece of furniture together. We moved it all around and finally came up with an arrangement I think I can live with. If not, we'll move it again! That's all she's got so far though. A crib with bedding, and two dressers. No decorations to speak of, no sweet lamp, no cute mobile...but I'm hoping to get some of that soon to finish it off. I've also got her big tree on order, so I can't WAIT to get that on the wall when it comes in! :)

Although this is not the most flattering I am at 35 weeks today!

Saturday, February 11, 2012

Holy Boxes Batman!

So Thursday we got a big medical supply shipment. They delivered replacement tubing, lines, dialysis solution, masks, hand soap, sanitizer, face masks, gauze, syringes...the list goes on. We cleaned off some of the basement shelving to prepare. This is kind of what I was expecting:

This is what we actually got!!!!!!!!!

I mean really! 

 (Doesn't Anthony put it in perspective?!)

Where do other people put this stuff!? What if we didn't have a basement? What if we had to put this in our house somewhere? And he has to order every month...and get a monthly supply each time. So because of the timing of his order he actually has to order again next week and get more boxes in 2 weeks!! Wow!

When I got home and saw it my eyes must've been as big as saucers. "We'll find a better place to put it. We'll organize it more. It won't have to sit right here forever. Some of this is going to go back, I won't use all this stuff," Anthony greeted me at the car. And this is just what's downstairs.

This is our set up in the bedroom:

This is on Anthony's side of the bed, obviously. The machine on top is what he'll be hooked up to. You can see some of the tubing and lines that Anthony will use hooked up. His first bag of Dextrose solution is laying on top of the machine, and the second bag is hanging on the side.  There is also a drain line that runs the length of the bedroom and into the toilet. He'll do this overnight tonight, Saturday, for the first time. It takes about 10-15 minutes just to get the machine primed and ready. Now all he'll have to do is hook himself up when he goes to bed. He got a shorter tube for his stomach so he doesn't have quite so much tubing hanging around. It's now a 6 inch connector that he's wearing. He seems to like it better.

Anthony will dialyze for 8 hours tonight. He'll have 5 exchanges over the course of those nine hours. He'll have about an hour of 'dwell' time each exchange. So basically here's how it works. An "exchange" is a full cycle. The machine fills up his peritoneal cavity with about 1400 mL of the Dextrose solution. He will then 'dwell' for about an hour and 15 minutes. In other words, it'll hang out in there doing its thing and cleaning out the toxins for 75 minutes. The machine will then automatically drain the toxin-filled solution from his abdomen and it will be carried to the toilet through the drain line. That's one full exchange. Once he's drained it will automatically fill him up again. This cycle process will continue all night until all five exchanges have taken place. He's trying to time it so that he can get up and unhook and clean everything up and out of the floor before Lincoln gets up. There's no way he will understand why he can't play with the tubing or pull it out of the floor. 

He's less tired with the peritoneal dialysis. It's a different process and doesn't involve his blood like hemo dialysis. He already feels better. He said he can tell a difference with his bones and joints in particular. He felt like an old man at 33 with hip and knee trouble. Once he started dialysis he noticed a quick change there. The other very noticeable positive so far has been the sleeping. He's definitely sleeping better, longer, and having less trouble falling asleep. For someone who hasn't slept well in his whole life, or at least as long as I've known him, that makes your world different. 

We're both hoping and praying that the noises the machine makes won't be significant and we'll be able to sleep well through them. I know it'll just be something to get used noises on vacation. I'm sure it won't take long for us to get used to it so that we don't really hear it at all. 

On a more fun note..Lincoln found this precious costume in his closet last week and just HAD to put it on! He was soo soo cute "swimming" around the house. Could this be a sneak peak of Halloween?!

Monday, February 6, 2012

Hello Peritoneal Dialysis

Today was a pretty big day. Anthony had his outpatient surgery for his new catheter for peritoneal dialysis, which he will soon begin performing at home. This means he won't have to go sit at the dialysis clinic 3 days a week for 4 hours at a time. It's freeing, really. And after being there with him for a while today after the surgery, I'm glad he's getting out of there! Those people look like they're packing for a trip! They've got pillows, blankets, sleeping bags (really!), and everyone has a giant bag of stuff. Not to mention he's the youngest kid on the block! And some of them are really old and kinda stinky. I'm totally OK with him not going back in there...
Anyway, the surgery was successful and only took about 45 minutes. He's got a stitch in his belly button, an incision where they actually inserted the catheter and performed the operation, and an exit for the tubing from his peritoneal cavity. All that being said, he's got this funny looking tubing that's almost 2 feet long kinda dangling out from near his belly button. Kinda strange. After the procedure we went straight to the dialysis center to begin training. This was not a huge success.
Really...they want someone who was just totally unconscious and under general anesthesia to listen, watch, learn, and understand a totally new procedure that they can't relate to anything they've ever known?! GET real! He could barely hold his eyes open, he said it felt like his arms and legs weighed 50 pounds each. Not to mention he's doped up on percocet and is in quite a bit of pain. Is that the best time to "train" someone on how to use this super expensive and very intricate equipment?! I think not. 
We made it through the hook up process, I got to stay and watch. Wow. That's a lot to remember. Thankfully, he will be doing that every day this week at the clinic so he should know it backwards and forwards in a few days. I'll explain more about how it works later. Quite fascinating. He was hooked up for 3 1/2 hours today. The rest of the week it will be longer and he'll eventually be released so he can do it here at home while he sleeps, not while sitting at the clinic in a chair. 
The machine is on a cart with all of his supplies so he'll be able to roll around the house if need be. Ultimately he'll be doing this while sleeping. A little interesting thinking about all that tubing in the bed. The machine isn't very loud but does make noises when an exchange is happening...while pumping fluid in, or pumping fluid out. Just something we'll have to get used to...9 hours a night, every night.
He's doing great. Sore, tired, and wiped out from anesthesia. But overall he's feeling good. He's hoping the soreness wears off quite soon. He doesn't want to take the pain meds they gave him, pretty strong stuff. Hopefully he'll be down to just aleve or ibuprofen in a day or two. 
All is well, just hoping he can sleep with the pain and new sensations he's bound to be feeling. Me too, for that matter. 

Thursday, February 2, 2012

Surgical Consult

Tuesday morning at dialysis Anthony got to see Dr. Paul. Doctors only visit the clinic on a rotating schedule on Mondays and Tuesdays. Dr. Paul said the radiologist who took Anthony's X-rays at the hospital now thinks that his kidney failure is congenital. Meaning, he thinks it's been going on for much longer than we had ever imagined. He is basing this theory on Anthony's loss of bone density. According to the x-rays he's lost a LOT of bone density and that it had to have been happening for quite some time, we just didn't know. They are saying this has been caused by Anthony's parathyroid that is excreting hormones that eat his bones. Now he has to take another pill in the evening to suppress the parathyroid from kicking out all that hormone so his bones can regrow and he can begin to recover. The doctor even said that his foot pain, for those who know, that has not allowed him to run for years may be reversed! Meaning: he may be able to run again once his bones are restored! Now that was super news to Anthony's ears! 
Tuesday afternoon we went up to Lenoir for a surgical consult with Dr. Bast for Anthony's stomach catheter. This is so he will be able to do dialysis at home instead of sitting in the chair 4 hours, three times a week. This catheter will be in his abdomen, with tubing in his peritoneal cavity. It is different than dialysis at the center because it doesn't deal with his blood at all. This will put fluid into his peritoneal cavity and as it cycles at night, the lining of the cavity will allow for the toxins to be kept in the fluid so it can be drained out and discarded. From what we understand, this will be an overnight process. About 8 hours a night. Every night. There will be a dialysis unit that sits beside his bed and is plugged into him. Then there will be tubing that carries toxins out that runs to the toilet. 
Hopefully this will still allow him to sleep easily. He's not a terribly good sleeper anyway, but since starting dialysis his insomnia has already improved. Of course we had tons of questions. The catheter in his jugular that runs into his heart will be kept for several weeks. The surgeon said there are several reasons: they need to be sure the peritoneal dialysis (PD) is working and will do blood testing to check; we have to be sure it's something Anthony wants to do. If he hates it, he'll need to use the catheter into his heart again. He just had the stitches removed from that but it is still uncomfortable and is what's causing most of his pain and trouble. He's hoping it won't have to stay the full 3 weeks after the PD catheter is placed. 
We asked about taking a shower. He can't get it wet still, so he's showering with the hand-held kind so he keeps it dry. The surgeon said this PD catheter will need to be kept dry for 6 WEEKS!! That's a realllly long time without a nice hot shower! How do you take a shower/bath without getting your stomach wet?! Dr. Paul at the hospital had said probably about 10 days, then Dr. Bast said 6 weeks. Yikes! I doubt Anthony waits that long. He said total knee patients weren't even that restricted so he figured he'd probably be Ok too. I was concerned about New Baby Girl and whether Anthony will be able to get out of bed to help when she gets here. I wondered how long it would take for him to unhook/hook-up if I needed an extra set of hands. Dr. Bast said the unhooking process is pretty quick and easy, then he'll be able to stay unhooked for a short period of time before becoming uncomfortable. The hook-up process will take longer, he has to clean it all again and use "clean technique" with gloves and such. He said that could take as long as 30 minutes each time. Ant's not sure it'll take that long. He has done wound care as a therapist for years now...and he is very comfortable with the process of keeping things clean.
So for now, Anthony has an official "pre-op" appointment Friday morning to fill out paperwork and such. He is scheduled to have the outpatient surgery at Caldwell Memorial Hospital on Monday, February 6. We don't know the time yet, but we are sure it will be early. He will go straight from the surgical procedure to his dialysis center. There they will begin his training process. Next week he has to go to the dialysis center all day, every day for training. We think he's going to have to do the PD there at the center with them until they're comfortable and feel sure he can do the whole process himself. Needless to say he will not be working next week.
He worked a full day Monday and Wednesday of this week. Yesterday he had a really good day and came home feeling like his old self. He was peppy, energetic, and feeling good. So for now, his last day of hemodialysis, with the blood, is Saturday. Beginning Monday he will use his PD catheter to begin PD at the dialysis center and be trained all week. After that he should just be able to do PD at home every night and have a regular, normal schedule. He should be able to go back to work full time, providing he feels well enough. No more missing two days of work and half a Saturday. Hopefully this will allow us all to feel like things are getting back to "normal."
He has requested the information and materials for a kidney transplant. There is a wait time while the proper channels are followed and then there will be a huge packet of information in the mail that will need to be filled out. After that Anthony will have several full evaluations to ensure that he is a good candidate to receive a donor kidney. Once he's been through the blood testing, tissue testing, psychological evaluation, financial evaluation, and all the information they need is gathered we'll know what kind of kidney we're looking for. This will enable his friends/family who are interested to be evaluated as potential donors. They will also have to undergo thorough testing of the blood, tissue, psyche, and finances. We'll keep you updated as that process continues.
For now, the only way to answer most of your questions is: "We're doing Ok." Every day is different, every dialysis is different, and we're living together day to day. We're not making long-range plans, other than the birth of our child in 7 weeks. (YIKES!) We have to live in the moment, take each day as it comes, and help each other. Please continue to pray for us. Not just Anthony, but our whole family. This is a strain on everyone for many different reasons and we all appreciate your prayers. We certainly feel them, and I definitely need them! Thanks for your love, support, and help. We appreciate all you have done for us so far and can only be humbled in our thanks for your help.