a day in the life

It's been a long time coming, but I'm finally getting to it. A day in the life of Matthew, photo journal style. Now some changes have been made since I took these pics a month ago - like no longer on procrit/epogen, he is on Aranesp that he gets once a week at diaylsis.) These include diaylsis and the common what we do when the g-tube has been pulled out too. If you have any questions about these pictures, please do not hesitate to ask. Whether you have a kidney baby, or know a kidney adult it would be a wonderful opportunity to share tricks of the trade. I will do this for my kidney donation steps too. Beware - you will see a jug of pee in the future (just not me actually peeing into it...I do have some privacy issues!). Also, you will never see pics of any of my children in situations that I am needed to hold their hand and soothe them. So no pictures of getting the actual shot of procrit, no pictures of the g-tube being pulled out or me shoving in a new replacement, and no pictures of bandage change. Trust me, those times are deeply burned into my memory and I have NO need for Matthew to ever see them anyway. I hope you learn a little something about kidney function and what life is like without. If nothing else, I hope you see what a remarkable son I have and all the trials he faces - with such sweet smiles and giggles. :) On to the show:

Daily Medicines




The meds on the counter basically help to control electolyte imbalances that your kidneys do naturally: sodium, iron, calcium, parathryoid levels, potassium and phosphorus. He has one or two meds for each of those electrolytes. The meds in the frig are for high blood pressure, kidneys also control that function in your body too. The jug next to the meds is his formula. We make a new 32 oz batch every night at 10pm; we add kayexlate and shake. The kayexlate binds the potassium and settles to the bottom. In the morning we pour off the formula, leaving the brown sludge you see pictured. Too much potassium can cause someone to go into cardiac failure. Matthew hoards pottasium! He's not allowed any. I have noticed muscle cramps and spasms because of this - we now had baby applesauce through his g-tube four days a week, both days of the weekend since he gets dialysis on Friday and Monday and then Tuesday and Thursday too. This keep his potassium level right around 4.7 - 5.1, perfect!

Here's what his formula is comprised of (I didn't take a pic of the kayexlate, but you saw the "final" product anwyay. :)


Here are the "special meds" he doesn't get these every day. Which is good - we have enough problems with the heparin he gets...stupid bloody noses!! And like I said before, no more procrit...we have "moved up" to stronger meds - Aranesp (a protein made from human plasma).



OK, so how do we get these meds into him you ask - his g-tube of course. LOVE the g-tube. No more iron stains, no more half doses due to spit up, and no more forcing a tiny baby down and making him swallow these VILE things! So, here's the package and the tube itself. You can see the two ports; the med port with the small medicine syringe and the feed port where I do his bolus and night time feeds. Also attaching what the temporary "replacment" looks like for after he pulls out his own g-tube - not that he EVER does that right...umph!





I think I've got a lot of pics up right now, so I'm going to just move on to dialysis...but know there are a LOT more. I have tegaderms (breathable bandages), swabs and catheters for cultures of urine, the feed pump (which I belive you can see him hooked up to that on his caringbride site, the 2nd page of pics...I really need to update those...) Also his therapy, but I don't have Crystal's permission to put her pic up here, I'll ask her next week if she would mind. :)

So why don't you travel 64 miles with me from our door to Egleston's door. We are across the street from Emory University Hospital smack in between the city of Decatur and Atlanta, though it is given an Atlanta address. We head down four stories into the parking deck, parking on the very bottom level so we don't have to fight for a spot or be followed by parking vultures (which just makes me go slower people!). Up into the elevator to another elevator further in the heart of the hospital. The butterfly elevators. :) Now up 6 floors to the transplant wing and greet our family. I will not be publishing pics that I have taken with nurses/dieticians/child life workers, because again I only had their permission for his transplant journey book that I am making - not my blog. These pictures were taken on his first birthday, thus why I have my camera at dialysis in the first place. :) Oh and the one pic of his hospital crib, if you look closely you can see his little arm hanging out...he was napping. :)






Again, these nowhere near show you the amount of crap he puts up with every day. It's a small glimpse into a BIG life he is going to live. And because of all the crap he puts up with daily - he IS going to live! I'm so proud of my little fighter. Matthew is my hero. :)

Five for Friday by Mama M

Here we go, my friends! I was super excited that last week's Five Question Friday was "off the hizzay" and that I learned a hip new word from Keely! Thanks! (P.S. Isn't that a cute button?!! Again, muchos gracias to Michelle!)

So, the rules? Copy and paste the five questions below to your blog post, answer them, grab the MckLinky Blog Hop code and link up! I'd also love it if you'd link back to me...not a requirement, just a request!

And, we're off!!


1. What is your favorite Holiday and why? (Thanks, Keely! Yup, same Keely as above!!)
Christmas! The meaning, the season, the smells, the presents. :) Actually my favorite part is finding that PERFECT gift for someone, something unexpected that they have no clue they are getting and then watching their face. Priceless. My hubby and I married two days after Christmas. It's just a magical time of year. :)

2. Who has been the most influential person in your life?
I would have said one of my grandparents, because up until last year they were. Now, it's Matthew. My son has shaped my life in such a way that I will never be the same. Don't get me wrong, my first born changed my life and has only brought a richness to it that he can, but Matthew has allowed me to actually be a better person. More compassionate, more Christ-like, more determined. He's fixed my flaws and helped me to forgive other people for those same flaws. He's brought me closer to God and to my family in a way I've never expected to in this life. He's shined up my soul. People often say they are proud that I didn't give in and terminate him. I say I didn't save his life, he has saved mine!

3. If you could give up one household chore forever, what would it be?
Only one?? Dishes, I can't stand dirty dishes. Once the food is in my belly, I find it absolutely disgusting on the plate. Even my own families forks and spoons repulse me after the leftovers are placed in the fridge. I will NEVER touch a fork by the tines, only the handle. Just heebie-jeebies me out! And if we are without a dishwasher for some reason and must wash things by hand - well...we'll just get fat and eat Mickey-Dees for a week. I'm not washing by hand. I was born and raised in the last couple of decades of the 1900's for a reason. God programmed me to hate dirty dish water!

4. What is the BEST practical joke you have ever been a part of, on the giving OR receiving end? (Thanks to Meghan, for that one!!)
It wasn't really a practical joke, but it was fun regardless. My oldest son William had just been born 7 weeks earlier and it would be our first Easter as a family. With him so young and my husband having used leave from the coast guard for his birth, we didn't think we'd be able to make it home to GA. (we were in NC at the time) But he was given Good Friday off and then decided to take the following Monday to allow us a 4 day weekend. So we called our parents and told them how much we would miss everyone, but we would call when everyone was sitting down for Easter lunch together and say hi. We showed up at my husband's grandparents first. Many on that side hadn't been able to come up to meet William yet, so it was a double surprise. Ian was talking to his grandmother on the phone asking what she was serving, then we walked through the door saying it sure smelled good. Lots of happy screams ensued. :) Then we surprised my mother, I told her we had sent a special surprise for Easter and I had gotten confirmation that it had arrived - could she look on her porch? We put William wrapped in a blanket and set on a pillow in front of the door in a huge box (we left the lid off). My mother as on the phone with me saying how it looked like someone had opened the box and she was mad. Then William raised his little arm in a stretch and she started screaming! We have it all on tape. It's hysterical. You can hear her screaming from inside the house with the doors shut! It was great!

5. Where (or how) did you meet your spouse?
We actually went to the same high school, but never met. (I was too cool for him) :P A mutual friend of ours asked him to come sit with us for lunch in the student center at college a couple years after graduation. We hit it off immediately. Our mutual friend was my maid of honor 4.5 years later. :)

Pick me, pick me!

No, I'm not entering a spelling bee contest (I'd loose miserably!), I'm getting the paperwork in to be my son's donor. Unfortunately grandma's glucose levels were just too high...even with the cheating. Yes, we were trying to cheat. :P It just wasn't meant to be. But honestly, all along since we were told Matthew would need a transplant to save his life back when he was three days old...I knew somewhere deep inside that it would be me. Hoped it would be me. I really want to help my boy out!
Now that the time has come for me to start the tests and procedures, I'm both anxious and excited. I can't wait to get things started! I've been waiting for 14 months after all! I don't fear pain, needles, stitches, procedures or tests. I just want my baby to feel good for the first time ever!
Yet with all of this bouncing on the couch (think Tom Cruise) over here...I think I am remaining guarded and cautious now. My mother is in perfect health, yet she's been passed over. My own health...eh... I have migraines, IBS, severe PMS and arthritis in my wrists. I've had kidney stones in my past and monster of a kidney infection before. I'm nervous my kidneys aren't good enough. Well, one is...but I'm scared the one that would be left in me isn't. I'm not afraid of kidney failure or dialysis for myself. It wouldn't be fun, but if a baby can do it...come on right! ;) Though babies are exceedingly less whiny than adults; I've seen this first hand! My biggest fear is to go through everything, only to show up at an ultrasound to see I have a surprise in my kidney - a stone. Now I haven't had one in 9 years! I've become more aware of my diet and my water intake. But my dad has had about 26 kidney stones total, my brother is on...number 5 o 6? My dad's grandmother died due to complications of not passing a stone. Odds aren't in my favor...
But it doesn't matter. I'm going to try. I'm going to do everything I can to help my baby feel better for the first time. My donor packet is on it's way today to Emory. I am praying for a speedy process. Luckily if I am the donor, they will fit surgery to my wishes...my wishes are for this to have been over with yesterday! So, it is full steam ahead...you up for a ride with me? Hang on...it might get bumpy!

Five question Friday from Mama M

I know, I know - bad blogger friend. I missed the McLinky cut off, but I'm still doing it. Had to wait til naptime though. Yesterday = bad! But today promises to be better. :) So, here's my five.


1. What is your biggest Pet Peeve? (Thanks, Meghan!)
People talking with food in their mouth. It's just disgusting. Really, you have something SO important you can't take the 6 seconds it takes to swallow your food before you share with us?

2. With no worries about finances, childcare, or travel time...where would you most want to vacation?
I always said I would want to travel to all of the different Disneys out there. We are huge Disney nuts over here. I want to experience the magic at all the parks and pick a favorite.


3. If your house was in the path of a tornado and you had time to grab 3 things before the house was totally destroyed (children, husband, pets are already out) what 3 items would you grab? (Thanks, A.!)
Ha - that was almost last night with the weather we were having! I am going to put a disclaimer out and say I would grab all of Matthew's meds (there are about 12, so that would put me over my limit - but I'm counting that as a freebie since his life kind of depends on those) ;)
OK - my three things: William's blanket (it's his security), Matthew's singing seashorse (help's him to sleep in "strange places", and the necklace that contains my grandmother's wedding ring set.


4. If you could live anywhere in the world, where would you live? (Thanks, Keely!)
Actually, I'm quite happy with where I am. If I wanted to get picky, I would move over a county into Cherokee instead of Bartow. But I do love north GA. It's perfect. I would like a summer house in Greece if we are getting technical...just for the good food and friendly people. :)

5. What is your family's favorite homecooked meal?
My husband raves about my pot roast and my mexican lasagna. They are pretty good...if I were at all a modest person. :P

Back to the drawing board

OK, so it looks like grandma will not be able to donate. She didn't pass her glucose tolerance test. It would not have been any harm towards Matthew, but the transplant team will not take a kidney from someone that may be pre-diabetic. Diabetes is usually the number one route to dialysis in adults. She is attempting to re-take the test again tomorrow. We are not optimistic, but it will make her feel better. The pass level for the 2hr test is 140 at the end or lower, she was at 162. I told her not to worry about it, Matthew will get his kidney. Whether it comes from her, me or an angel with a signed donor card...I don't know...but it WILL happen! And that is what is important.
Of course she wants what is best for her child (me). No mom wants their child to go into surgery...especially the same day their grandchild goes into surgery! She wants to make this as easy as possible for me. She knows that if I'm recovery from surgery, I can't help Matthew recover from surgery as much as I will want to. And she also knows that I will put myself at risk and do more than I should just to be with him. Yes, I'm aware of the cardinal rule - take care of mom so she can take care of the kids. But I don't follow it. (I better check to make sure no one at Emory is reading this...)
But through this journey of my possible organ donation to my son, I will chronicle the highs and lows. The pain and the praise. The heartfelt and headache! I want to use this opportunity to share with others the ins and outs of organ donation with others that have a natural curiosity or who may someday consider being a donor to a friend or family member. I hope to shed light on the experience and take away the mystery of it all. I will be brutally honest with facts and my opinions of them.
I have also (with the aid of some bloggy friends) put labels in the left hand column of the screen. Everything I share in regards to the transplant of course will be labeled under "transplant surgery". I have all of Matthew's recipient story on his caringbridge site and will update that as I always have with his side of the journey. I hope you are able to join us for both in prayer and praise as we get little Matthew moving on to the fast track of good health!

Five for Friday (Mama M)

1. What is the most embarrassing thing your Mother-in-law has ever said to you? (Thanks Meghan, for the fun question!)
My MIL has been on a "on again, off again" kicks of writing a romance novel. She has asked me what my husband and I "like"! Seriously...you want to know how I sex up your son?? Yeah, I think I'd rather talk about hemorrhoids! EEEWWW.

2. What would you say is your favorite thing about YOU?
I guess I would say my sense of humor...that is what most people compliment me about. I can turn any situation a little lighter by making people smile and/or laugh. (I'm the Chandler Bing of my friends!)

3. Speaking of "loos", toilet paper roll...under or over?
Honestly - no preference. I place it over since that is the "proper" way and it has been ingrained into my brain to be "proper" Hello...born and raised in the South! I just don't get the hang up though...it's paper...for you butt...does it REALLY matter if it is over or under in the grand scheme of things?

4. What is your most memorable childhood family vacation?
We would go to Disney World every year. My parents also sacrificed to do this for us. It's too hard to pick ONE time; I have warm fuzzies from the all. :)

5. If you could choose one super power, what would it be?
I would love to control time. Speed up chores, slow down playtime; speed up traffic, slow down family dinner. :) Yeah, that would be awesome!

Are you KIDDING me??

* OK - little parental warning - harsh and unladylike language will be in this post; can't help it...I'm pissed *

I just found out something about a friend. She is jealous of me. No, I take that back - she's jealous of Matthew! Well, he is waited on hand and foot, surrounded by toys and adoring family members and has someone to wipe his tiny hiney daily...that is a pretty sweet existence if you ask me! BUT he also is dependent on a machine to live both nightly (feed pump) and weekly (dialysis), has rickets so severe his bones look more like swiss cheese and has a blood pressure issue that is not going away with the two meds he is currently on. Yeah - I'm sure we all envy that!

No, that is not what this person envies...it's the attention. What attention?? The movie script that was thrown at us yesterday or the photo shoot for People magazine where they offered us a million dollars for a spread? Yeah, no special attention here lady. When he is out (and that's a big when because he rarely is out) in public, people don't give him any more attention than they would any other baby. Yes, he's a smiley little guy and people smile back...that's it. I don't flaunt his condition with arrows pointed to every different artificial opening and tube into my son! When I am surrounded by my friends in the privacy of my house or their house, I do show them Matthew's "robo-baby" parts. It helps them to become more comfortable around him. I don't want people to shy away from him for fear of breaking him. He's already "broke" actually. ;) People are uncomfortable around things they don't understand or don't have knowledge of...I don't want those I love and those that love him to be uncomfortable in anyway around him. Babies can sense that.

This friend is envious that when Matthew is around people that are aware of his condition, people want to see how he is doing. She is jealous of the fact that people are praying for him to get better. That family and friends gush over a milestone when he reaches it, no matter how delayed it was. Seriously - when this boy starts walking - the WORLD will hear the screams of joy from our house! I am VERY proud of my son. For defying the odds and beating the statistics. For LIVING. For going through Hell and coming out with smiles. He is a gift from God and has changed my life dramatically...for the best!

That doesn't mean he is any better than your child, than my oldest son, that you or me...he's different. All of our children change our lives when they are born. I don't treat him any differently than I have my first son. Actually he gets less time - less story time, less cuddle time, less one on one time - because I have two kids. William knows Matthew is special, but he also knows he is special too!

Now for you to have the nerve to say you don't want to be around when Matthew is around because your child doesn't get any attention...then I say F**k Off! I don't need you and your negativity around anyway. How dare you! How dare you be SO selfish that a sick baby threatens your share of the spotlight. And you think that when he gets his transplant, all will be well again between us? When he gets "better"? It won't. I'll be even more proud of him and I'll have another person to boast over too - his grandmother that is giving him the gift of her kidney.

I wish with every fiber of my being. With my heart and soul. To take away all of this pain and utter crap my child goes through every day of his life. I would gladly be beaten, whipped, broken and left for dead to trade places with him. That is exactly how I feel sometimes at the end of a bad day. The bad days when he has spent 4 hrs in surgery. The bad months when he is in need of three surgeries within 20 days of each other. When he cries at the sight of the hospital doors because he doesn't want to be messed with any more. It KILLS me. You want this? No you don't. You have no clue what you are talking about. And I'm not cruel enough to wish it on you.

Your shades of green jealousy are turning your soul black. I'll pray for you.

Siblings

One of my dear friends just found out she is pregnant. I'm SO excited for her! Her son, who I haven't seen in almost two years and MISS, is such a sweetheart and I know he'll make an awesome big brother. Her happy news made me flash back to the first few months of bringing my baby number two home. Man, I really do miss those baby snuggles. Just WHO said my babies were to grow up SO fast?!?

Anyway, I remember when I first found out I was pregnant. I was much more nervous about this pregnancy than the first. Not about the actual pregnancy or delivery - I'd already lived through(and oddly enough) enjoyed both of those before. No, I was nervous about bringing another one HOME. I already had one there after all. I was used to that, comfortable, in a routine and loving it. Now I was going to change everything. Did we think through this enough honey...oh well...no turning back now!

And then a three months later life as we knew it was turned upside down. But I've already told that story.

So here's the story of us getting home and all things NON hospital. Just happy memories of our first few weeks at home together as a family. In Matthew's first 4 months at home - I think he was actually home only a month of it. Our first REAL time together was for one week in the beginning of August. I remember it so clearly, despite the sleep deficiency induced fog. I remember waking up for the 5am feedings and snuggling on the couch with a sweet smelling baby. After Matthew would fall asleep on my chest for an hour, the big brother William came out and took his position laying on my legs and hip. We would all stay like that for half and hour of just snuggling...holding the two things that are the most precious to me and letting time stand still for just awhile. It is now a tradition that we carry out one year later after naptime. Because I paid attention to advice from my other mommy friends that told me to get them to nap at the same time. ;) When my children wake up, they are at their snuggliest and I take FULL advantage of it!

With all of the craziness and uncertainty of those first few months, I was blissful in the normal, day to day things. William is such an amazing big brother. Whenever Matthew cries because of a dirty diaper, a dropped lovey, or the fact mommy is bringing out that $!@% blood pressure machine again - William is right there. Patting his little brother's head say "it's ok Matthew". He looks forward to and ask for every opportunity to hold his brother. (Which was much easier when little brother was just a ball of baby that laid still - now it's a wrestling match). When William walks into the room, Matthew's face lights up. William's "job" is to make Matthew laugh, Matthew's "job" is to quit breathing because he is laughing so hard. Man, I love these boys!

I had heard SO many horror stories of bringing the second child home. I am happy to report that I do not have those same horror stories - I have MANY different ones. ;) But you have those stories whether you have one child or five...bad days happen. Luckily the good outweigh the bad - ten fold!

small diversion

I know - I know - photo story of Matthew. I'm on "couch rest" however. Not even at dialysis with Matthew today. I'm home with strep throat! I know! Who gets that when they are older than 10? ME! Put until I'm 48 hrs on antibiotics, that are doing a number on my stomach mine you, I'm laying low. Photo story to come. :) Until then I'm doing a Five for Friday from Mama M. :) (and I don't know how to link to her site, but visit this: http://fivecrookedhalos.blogspot.com/) She's quite funny. :)

1. What was your favorite wedding gift? Or, if you aren't married, what was your "favorite" gift you gave?
My living room set. Yes, the entire thing - couch, love seat, coffee table, end tables and a lamp! VERY helpful for two broke "kids" furnishing their own place for the first time. BUT, I did get our queen headboard and rails at a community yard sale for only $4! I'm just that good. ;)

2. Speaking of weddings, where did you honeymoon, or where would you like to honeymoon?
We went to Disney World and Sea World! And had a BLAST! Actually, my favorite wedding gift is involved here, but I had already read the questions and knew I would put this story here. My husband's parents paid for us to have backstage tours. It made our honeymoon unique and special. Learning, seeing and doing things we had never done before. Quite cool!

3. If you had to choose (you know, if anyone would actually be that cruel)...shoes or chocolate?
I would never give up chocolate! I might could for three weeks, but when that 4th week rolls around - my hormones take over. I MUST have chocolate. As for shoes - I despise shoe shopping. I have one foot that is shorter than the other. One is a size 7 (my left) and the other is a 6. VERY annoying! I usually just get a size 6.5 and call it even. But when sandal season rolls around, I often end up being two pairs...so I can get an exact fit and no blisters. I live for BOGO free sales on shoes!

4. Besides your kiddos and husband (if you have those), what are you most proud about in your life?
I didn't give up on Matthew. After being told THREE times to abort - there is NO way he'll make it. Well he did. And he is about to have his kidney transplant in the next few months. What do you think now docs??

5. And, (since it's raining here...I'm just glad it's not snowing) what is your favorite thing to do on a rainy day?
Man, that's a movie day! If it is a warm rain, I let my three year old put on his Lightening McQueen rain boots and go splash. Gotta have some fun right!

Feel free to play along if you want too. Have a great weekend. Wash your hands!!

Back to work

Man, have I been spoiled. My husband has been home for two months and took full advantage of it. He went to dialysis on Mondays so I didn't have to pull double duty. Sometimes he even went on Friday too if I didn't sleep well or had arranged a playdate for William. We were able to all eat together as a family at 5:30pm. I was able to go to the grocery store at normal hours, run errands as needed and had someone else to walk to dog during the day. I thoroughly enjoyed it. But it's all over now. :(
I'm NOT saying I don't enjoy doing the mommy things, I do...but it was nice having a break - sharing the load. I think it is apparent that my job is more than just mom. Mom in and of itself is a lot. Throw in twice a week dialysis runs (that last anywhere from 8 -9 hrs start to finish), physical therapy on Wednesdays, daily blood pressure checks (which he enjoys so much let me tell you), administering meds on a strict schedule and bolus feeds with a 2 oz syringe directly into my son's stomach every three hours...this ain't your average mommy day. On top of that, I have to do all the "normal" mommy things for my three year old. We don't get out of the house much. My errands are now run after 8pm, but at least the grocery store isn't crowded. ;) Now I'm not saying this in a my life is harder than your life or please pity me - I'm just saying: MAN I MISS MY HUBBY! :)
I have taken pictures (on request on my sister Audrey) of all the aspects of Matthew's day. She wanted to better understand what I was saying when I was talking about things. I am going to share a picture commentary of a "day in the life of Matthew" either tomorrow or Friday. As you can see by all that above stuff that is written, I don't have much free time during the day. Matthew is napping and William is playing cars (what else is new?). But I have to go to the computer downstairs in the office to download photos instead of the laptop on the coffee table...so it takes time getting down there. I promise by this weekend at the latest.
I hope that by doing this, it makes my son seem less fragile actually. When you see all of these tubes and ports and catheters - it really freaks people out. Myself included when he first got them! I just want to familiarize people with a new way of life. Maybe help someone else to understand or empathize with other special/medical needs children. They will not break (they are actually stronger than any other children I have met!). They are not different, at least no more than any child is from any other child. They just have a unique way of doing things. Their just extra special.