Saturday, August 29, 2009

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. :)


Randi Jo :) said...

those pics of him smiling so big are tooooo cute haha I just crack up when he's like that. reminds me so much of you.

I just can't imagine there being a better mom for him. With your love of science and how sharp you are - you're THE mom for him going through this. truly. you both are warriors & it's an honor to be able to do this journey with you via blog land. Just wonderful.

thank God for you both! :) Love ya!

J said...

thanks for including the picture of him. the mountain of meds seemed dwarfed by his amazing smile. i am so glad that i found your site, it is an inspiration.

Bellismom said...

Just found you from Mcks blogfrog. What an amazing story you guys have. After reading your posts I remember now the thread you start on the blogfrog about your friends being jealous of the attention and how ANGRY I was. I couldn't even imagine how that felt for you. Praying for you and your sweet little Matthew!

Mae said...

Hi! I just found your blog and read through most of it. What a wonderful family you have!
And I am so very touched by your story, most amazingly so because I have a brother named Matthew who had a kidney transplant when he was 13; and that was 25 years ago. And while I was young (12) at the time, I remember a lot of doctor visits, hospitals visits, tons of medicine in the house, and even dialysis.
And I know it's nowhere near the same as having to deal with in a child so young.
But I wanted to let you know that I found your blog and have added your family to my prayers.

Santino's family said...

I love the photo journal. I can now invision what my fridge/counter space is going to look like. Our room is going to be taken over by his med equipment. It is all worth it. What is a little bit of space? The pics of Matthew are too cute. Thank you for sharing his big smile with us. It gives me hope and joy for my lil Tino.

Julia said...

Ah man, the memories are flooding back. I was just up on the 6th floor early (for me) this morning and the place it timeless. This month was three years ago Gage started dialysis while we waited for his transplant and I'd swear it was yesterday because you walk in and it's like them movie Ground Hog Day.

I love your photo story. That M is a cutie pie

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