So much has happened today…

2 conference calls with clients

3 calls regarding client work

2 calls with doctor who treated Gage

2 calls with nurse at hospital about discharge, regarding paperwork needed to get him back in school

2 calls with school about his return and separately, updating his IEP – meeting scheduled today for that.

1 call to ped to get Quinn in this afternoon.

1 call to my BFF for Q duty.

1 call to my mom to relieve BFF while I pick up Gage.

2 calls to Julian out of town

But Gage is home and doc has released him to return to school.

1 PB&J (gober) sandwich and half a jar from a spoon.

1 happy-to-be-home boy

1 happy sister

1 happy dog

28 blog posts in my head about all of this

1 blog post about parents who are about excluding rather than including, unlike Gage’s BFF Laura’s mom, who not only allows her daughter to have a friendship with my son, but often encourages it.

More later.

I had two good visits with Gage; one yesterday and one today. This is what we know:

- He was interactive with me. Both days we did nothing that we wouldn’t do with him living on the outside; we read a book, did a small puzzle, played a card game, played with a magnet board and read a couple of cards and notes together.

- He is on “One-to-One” orders right now and has been since he arrived on Wednesday. He said he can’t leave the unit or go to the gym or outside because of the order. The order includes 24 hours a day. So someone watches him sleep, too. He found it hard to sleep while someone was staring at him. The weekend person said she is going to give the doctor a good report for the weekend. He’s been compliant, participating and calm.

- Gage looked shaky yesterday but today I didn’t notice any of it. He also SAT with me FOR A WHOLE HOUR, which might not mean much to you folks with kids not living in a mental hospital, but for me? Pretty shocking. I know we were playing , but usually he’d rather take apart a chair than interact for an hour doing anything.

- I am so relieved that he is safe. Those first two days were rough for him, but on the outside? Unbearable. Parents shouldn’t have to hold their child and keep them in a “safe room” and watch them for 24+ hours. I mean we would have but I’m glad I don’t have the memory of it, even if I know it occurred. I’m so thankful there was a place for him. I understand it is the only place in Atlanta.

- I am not sure what Gage remembers from the episode. So far I know he remembers the safe room. Not sure he has a concrete memory of the spiraling out of control, and I hope he doesn’t.

- I get to see him tomorrow for an hour as well so I asked him if he wanted me to bring anything special. He mentioned a specific coloring book of his. He also enjoyed the notes and pictures I brought. His BFF, Laura sent a note and picture and as I left he and his STALKER were going to hang it up in his room.

- Things are very calm in the house without him here. I hope when he comes back some of that calmness remains. We’ve been in the war so long, I forgot what calmness felt like. I so badly want this to be a new beginning for him; a stepping stone to a better life for himself. And one that involves a better life for the other three in the family.

We will know more tomorrow when his doc is back on duty. We might get an idea of when he will be coming home. In the meantime I need to have an IEP meeting with the school so we can talk about reentry. The social worker told me Friday that the average stay is 5-7 days for stabilization. Wednesday will be one week.

If we are going to focus on anything it would be that Gage is out of crisis.

Friday I was able to see Gage. The hospital called me to come in to see a social worker along with Gage late in the day. I met with the social worker first because I needed to address some items that were bugging us about the first day and a half stay for Gage.

1. When we called Thursday night to check on Gage and confirm they gave him his transplant meds no one could really tell us what time they were given. We spoke to 5 people trying to get an answer. There is a difference between the time a med is ORDERED vs. the time a med is GIVEN. And no one could answer that question. Not comforting. Yesterday, I met one of the few people that dispense meds at 9 and 9 and she knew the meds, doses and importance.

2. A month ago I started notebooks that each morning I write a message in to each of the kids. I started it for Gage so I can give him a message about the things I love about him. So each night I write a note and each morning he says, “I saw your note.” And that’s it. One night I forgot to write it and he really did miss it. The second I walked downstairs he said, “Mommy, you didn’t write in my book!” So I know the notes each morning meant a lot to him. So when Gage was checked in we had a quick meeting with the head nurse and he gave us all the details about contact, visiting, phone and fax. I asked him specifically if I could fax Gage notes each morning and he said yes. But I sent two and he didn’t get them when I checked today. Annoying. I know it seems like a little thing, but I want Gage to know that the notes are important to me and it’s important he know that each morning I am still thinking about him even though he is out of sight. I want him to know I am thinking about him.

3. It was annoying that the social worker hadn’t read the file or met Gage. She hadn’t even talked live to anyone before hand to get any back history. I don’t know about you but I’m guessing if you are going to talk to a patient and their parent about how he came to be there and how it is that he can get home, then you had better read the file. But that’s just me.

When I saw Gage in the hallway it wasn’t very dramatic. I immediately put my arm around him, kissed his forehead, noticed two bruises (guessing they got there during the hours of raging) and told him how happy I was to see him. He looked zoned out a bit, but he was up 31 hours straight the day before and so he’d taken an hour nap before I got there.  Or it’s the med and his body’s adjustment. When I was leaving he got upset (presumably because he wasn’t coming with me) and went to his bedroom, where he was crying under his weighted blanket.

He didn’t really participate in the social worker meeting (and I didn’t think he would, so my expectations were low) but we both did tell him that our goal was for him to come home and that in order to do that he needed to participate and learn some coping skills to help him deal with his anger. I told him that I bet he could learn a lot there if he tried and I encouraged him to do so. I told him that I loved him and that I wanted him home.

He said he hated it there. Yeah, figured that sweetie. But then I realize too, that maybe home won’t look so horrible. We have to be better than a mental hospital, right? Yeah, that’s what we think, too.

I held it completely together while I was with him but when I was leaving I was crying. Such is the life of leaving your child behind to deal with their problems in a setting you hope will help. Still though, with the leaving. Suckage.

We can call him and talk to him each night between 8-8:30. Since I saw him I wanted Julian to talk to him so he called and Gage answered yes, no, then said, “I have another call, I have to go. Bye.” Julian called me and asked him if I was calling him. No. I guess they only have 2 phones that work (whatever) but 40 kids, who all probably get calls. Julian called back and the nurse explained that she told Gage that other people needed to make calls. She did tell Julian that Gage had a great evening, was compliant and even participated in group. Stunned.

In a little while I get to go see him. I have a couple of card games to bring, this morning’s note and my love. That is all because they will not let me bring anything else. Nothing that could be a weapon or something that a kid could harm themselves with and so, nothing else.

I am so thankful that Quinn got to spend the night at a friend’s house, so she could just be normal in the midst of all of this with Gage. She watched movies, played and this morning I understand she had pancakes and bacon. My lovely friend Sue is keeping her until after I see Gage today and then we are headed to see one of Quinn’s favorite people; our goddaughter Tess.

I am largely numb today, feeling like our family life is out of control yet I’m keeping it all in check because that’s what moms do. I had the privilege of going through stacks of medical bills/statements and the total owed is nearing $70,000. I know Medicare will pick up most of it, it’s that other $10-$15k I’m worried about but also know it will work out, as we always have to believe.

I’m at work catching up and distracting myself until it is time to go see my boy. The boy with so many challenges that I see it makes me wonder how he is viewing himself and the situation. It is a sad, scary time for all of us as we contemplate the immediate future and the distant one, too.

But that is not new to us. I just always thought it would be his physical health in question. I never imagined that his mental health would be in question. This is exactly what I was talking about when I said it is never-ending. It honestly never ends. But deep down we have to believe it can only get better. Right? Right.

In list form because then I don’t really have to be coherent. I know you understand.

- When I woke up I realized Gage wasn’t in the house and I started to cry then Quinn said, “Mommy!” and I said, “Good morning Quinn!” all excited because she had a performance at school this morning and she deserves for me to be happy about her waking up to perform. Which was extremely adorable, by the way.

- Many people in our Village are offering their love, support and prayers. Along with food and help and wow, again, after having just called on all of that for Quinn’s transplant you still want to help and I’m overwhelmed with love and warmth. Your love surrounds us like a blanket.

- Already working on next steps for Gage’s IEP stuff. One thing I know, until we have a meeting about the recent incidents and without the team having more information (which I am not willing to share here yet)  it is way too early to speculate on where Gage will go to school when we returns. I believe that with proper meds, an adjusted IEP, therapy support increased and more understanding about what is truly going on with Gage, that our school can serve him. But there will obviously be changes to his IEP. But speculation? Not good.

- What do we need? Prayers, love, support, understanding.

- Quinn hurt her foot last night and I thought it was broken, then I thought it wasn’t. Then I was going to take her to the hospital but she had a performance this morning at school and so we said, if you can go to school, great. If it’s too hard to walk, we will take you to for an xray.  She can walk on it, it just “hurts real bad.” But still.

- I have a meeting with the social worker and Gage tomorrow at 2:30. Apparently it was a rough night for him. A safe room, with one-on-one care, which he desperately needed. Today was better, even without sedation, but still bouts of anger/lashing out. However a new med is being started this afternoon, so I’m anxious to hear if that helps him in the short term.

- Julian and I are doing okay. I am joking when he’s upset, he’s joking when I’m upset and so it balances out. We did have one fight about a fax of all things. It lasted about 20 seconds when HE REALIZED I WAS RIGHT. Yeah, he’s great like that.

- I am without a doubt running on pure reserves. Reserves I guess that I’ve stored up since Quinn’s kidney transplant 3 1/2 months ago. Is that enough time to store reserves? Hell no. Which means I’m in negative reserves.

- I spoke with Dawn earlier and it was good because I can make really inappropriate jokes about my son and she can handle it. Not so with Grandma, I’m sure.

- Wow am I glad for my work. Honestly. I’m not just saying that because some clients read my blog either. It makes my life seem normal when I can do my normal things.

- We’ve cried a lot in the last 24 hours. A lot. Some from sadness, some from relief, some for each other, some for our family, but all for Gage. Wanting so deserpately to help him have some peace and happiness. Like the kind of happiness from cereal boxes which sadly always eludes him, no matter how much we try. Sure, he can be happy about a thing or an activity. But true blue happiness? Not seen that for a while. Too long if you ask me. But I’m just his mom.

- The good thing about him being in treatment is that the doc gets to see the worst. One thing his other med doc didn’t. She is very conservative and didn’t always want to act on what we told her about Gage. But this doc? He’s treated kids like Gage and that gives me great comfort.

- Must go, because really, I’m taking my girl to the hospital for an x-ray. BECAUSE MY LIFE IS CRAZY.

All typos and crappy writing must be forgiven today.

If you follow me on twitter and facebook you already know what has happened. For those that don’t, we’ve had to commit Gage to a psych hospital today that serves children.

This has been the hardest day of my life. He’d had, including today, 6 episodes of rage/anger (post below) recently and they’d been escalating. Last night and today at school and well, it was so clear that he needed more help than we’ve been giving him with a team of psychiatrist/psychologists and support and love. We needed more and he needed more.

It was a horrible day that involved us watching our child escalate into a manic-like state that shook us to the core. We are not surprised it has come to this, but we are heartbroken for our son. We watched four people restrain him and we watched him weep while swinging his arms and body to try to leave the little in-take room. The last time I saw him they had him in a safe therapy hold on the floor and the last thing I said was “I love you Gage.” The 2nd to last thing I said was, “If you will calm down we can ease up on the hold, baby.”  The absolute hardest thing I’ve ever done was to drive away from that hospital.

They sedated him after many phone calls and pager calls to the transplant team pharmacologist to make sure of what meds would be safe for his kidney. When we left (4 hours later) they said he was resting. When Julian returned tonight with a bag and his weighted blanket and transplant meds, we heard he was in a “safe room” where he was on one-on-0ne care and very agitated. This very nearly broke my heart, but then I think, I still have a little girl, the sacrificial child a lot of times because of Gage’s highly demanding special needs and my heart has to hold on the breaking for later.

If he can calm down and participate in the semi-real world again, he has a packed day of group and indiv therapy, therapy games, fun activities too. He is in his own room and throughout the night they have checks every 15 min. There are motion sensors at night so he is very, very safe. There are currently 11 kids on the wing between the ages of 4-12.

We cannot see him until Monday (and wed) for visiting time, but we can call him every night and we can call the nurses throughout the day to check on him. We’re comforted that Sally the Cat is with him and providing some comfort to him because I know he is scared. Julian will probably get a short visit with him tomorrow night (exception) because Julian is going out of town on Friday (through wed). Julian is still going out of town because that is a part of this life – moving on. And at $6250 a week for the hospital (not sure what insurance covers, if any) we need to make sure we are both working.

How’s Quinn you ask? Well, she is unfazed as of today, but when I told her that he was having a lot of trouble with his emotions; something in his brain and were trying to help him she said, “Yeah, he gets mad a lot” and then she said, “When he comes back do you think he will like me again?” Which is also heartbreaking in itself.

Obviously, we are terrified, scared and sad for Gage. But we are also relieved. Relieved that this might help him. We’ve already spoken to the doctor and after review of the files and talking with us they are working on his meds. We’re in constant talk with his other doctors so everyone knows everything.

The in-take psychologist started off on a not-so-great start with me because she saw Gage and Julian in the other room (Julian had him in a hold to control him) and she kind of judgmentally said, “I need to teach you all how to therapy hold.” I calmly said that is fine, but she needed to leave her tone and attitude outside of the room we were in and she needed to realize that we were in crisis, having never seen our son in this state and that she needed to be a little more gentle with her instructions with parents, thankyouverymuch.

We had a long in-take interview with her after Gage was in what I assume was some kind of padded room (seriously, see the madness in that!) waiting to see what sedative drugs are safe for him to take. I have to say, as parents, in between bouts of tears between both of us, we did okay. We were able to give her a history, talk about triggers (or lack thereof) and rationally discuss his many issues, diagnoses, possible diagnoses, cycles of sadness and rages. She commented that we were very informed parents.

We know this is the right treatment for right now because we have to believe or we would crumble into a heaping bowl of crazy ourselves.

What about Julian? My husband of nearly 16 years, for which my life would be bleak without? Him? He’s an amazing father and husband and I’m lucky to face this mess of our life with his heart, tears, humor and love.

We are asking for all prayers and good thoughts to God and Jesus and Buddha and the Easter Bunny, the Light and the Universe, or any Higher Power you like for extra love, peace and protection for Gage.

As a parent to sick kids I think an important, even vital part of our relationship as caregiver/patient is for them to see me advocate for them .

There aren’t many times when I’ve lost my temper, but if I do it’s usually for a good reason (at least it is to me and my kids). I can think back to the time that Gage was in so much pain he couldn’t stand, sit, or move his neck (catheter #2) and the surgeons nor his dialysis doctor were addressing my concerns about his pain, the time Quinnlin had 3 ultrasounds for the same test for her transplant evaluation and the last one resulted in her missing a day of school and me a day of work. There are also the many times that our time isn’t counted as valued. An example is when the clinic won’t/can’t order infusion meds until the IV is actually IN the arm – when it makes sense to order the med when we check in instead of the hour or sometimes later than an hour, as such was the case last Thrusday.

I’m fine with the kids seeing me upset when it’s appropriate, in fact, I think it’s a learning tool for them for when they are their own advocates. It’s just the truth, but health care people just don’t see what we see and they can’t know how it feels from our perspective – whatever it is.

If I’m to teach them the regular things about caring for themselves by being an advocate – even an upset one – is part of the package. I want them to grow up to take care of their kidneys, handle their meds, listen to their bodies (hence the E.R. visits when the kids ask to go) and to be inquisitive about what is happening with treatments and tests. The only way I know how to do that is by example.

So today, when I call the patient advocate, I don’t really have to. But I have to. It’s my responsibility to my kids and for other kids. They deserve the best care AND the best customer service that the health care community can offer. Would I rather not? Of course, I have other things to do, just like every other parent on a Monday, but I want to be able to tell Quinn that I am trying to make the impact of her treatment less of an impact on her already impacted life. When we go in next month I want it to be different for her and I want her to know that I did that and she can, too.

The problem with this is that you always feel like you are complaining, which can be quite the reputation to have when you work with people every week. I strive to show respect for the people and frustration for the process. There’s a distinct different. The people who are ordering the meds or putting the IVs in aren’t the ones that make the policies, they are just the facilitators. It’s the hospital policies that are usually in question, or the “way we’ve always done” mentality.

All I want to do is just to change some of the way they’ve always done it and when Gage and Quinn are older I hope they will do the same.

You start physical therapy at age 4 months of age. A therapist comes twice a week to your home to help you build your muscles to sit, crawl, walk, run and jump. You also see an OT therapist to build the muscles in your hands and work on your hand-eye coordination. At 8 months of age you see a vision therapist weekly to help you with your depth perception and your body-world coordination.

You spend hours every day working on therapy goals. Each toy you play with is therapy-based with physical goals in mind during the purchase. You spend weeks working on pulling up on the edge of the couch. You spend hours being tricked into bending over to build muscles needed for standing and walking without assistance. You spend weeks bending down to pick up rings and loop them over something taller than you.

Somewhere around 14 months of age your physical therapist brings over a walker. The silver, metal walker with 4 wheels that surrounds you in the back and you grip on the sides. It takes you a few weeks to figure out that it will not hurt you and in fact will delight you because you will find freedom in its glide.

You happily use the walker because you are mobile and you are standing so you can look your peers in your eyes. You put up with people staring at you using the walker but you don’t care. In fact, you kind of like the attention. You use the walker for months. Or for more than a year.

Your parents spend each day playing tricks on you so you stand unassisted. You reach up for something, realize you are standing and in a split second you go down to the safety of your bottom. Even one hand on something gives you stability, so for months you cruise holding onto whatever is hand height. Your OT still works on your hand gripping. Because that is vitally important in holding on when you swing.

You are 2 1/2 when you start to walk. You are three when you can walk outside the home (very nearly) safely. You are 4 when you can walk down a curb without hitting your face on the ground. You are 6 when you can jump with both feet in the air at the same time. This takes an incredible amount of skill. Years of therapy for you to learn to do it efficiently.

Maybe when you are 4 you start getting on swings. Your therapist and your parents tell you about 1,000 times over the course of the next 3-4 years to pump your legs, move them back and forth and that the back and forth movement have to happen at a particular time. So as they push you they yell out enthusiastically for you to move them back when you are on the upswing and out straight when you go the other way. But it takes years for you to understand what propels your body on a swing. But you still try.

Sometimes when the stars line up it works. We might start you out by giving you a push on the swing but then by chance your legs are in the right position and you move back and forth. You are so surprised when this happens and you scream, “I’m doing it! I’m swinging!” You don’t go very high, but that is okay because you really aren’t sure of the position and strength of the rest of your body so you don’t mind at all when you don’t swing as high as your friends or kids you see on the playground.

Then one day, nearly 8 years after you were born and 5  years after you start walking profiecently you are playing on a playground and then it happens. Your body is aligned correctly, the swing the right height, the weather isn’t too hot or too cold and you have enough energy to swing, swing, swing.

And that is the Anatomy of Swinging.

Quinn has always known she had “bad kidneys.” Ever since ever we’ve been talking about how one day she’d need a kidney transplant, how she has to take a lot of medicine and how little kidney function would/does impact her day-to-day life.

We always spoken to her on her level, trying to let her be a little girl without the weight of failing kidneys on her shoulders, but also hoping she would gain an appreciation for a new kidney when the time came. I think we have always been realistic of the kid’s understanding…that probably goes to our trying to give them some normalcy to it all and not have too many highs or lows emotionally when dealing with their challenges. We’re trying always to make them feel normal, within our world of abnormal.

So Quinn, has always known things about her are different. Most of the time she’s fine with being different but every once in a while she’ll say something about how her friend are able to do this or do that.

Last Friday we had a snow day and a neighbor girl came over to play. Age-wise she’s smack dab in between the kids and can play with either, which speaks to her ability to do a lot of things well – she’s flexible to be interested in Quinn’s likes and yet also Gage’s likes, which are completely different likes. She’s a charmer of a girl and both the kids enjoy spending time with her.

While I was home (no driving on ice for this southern girl) watching Quinn and this girl interact I was a little awestruck. I just all of a sudden noticed how much she was engaged in the play. She’s really playing fast now. By fast I mean she is keeping up with the play – whatever it is – which wasn’t her typical speed. She just moved (moves) slower than other kids her age (and sometimes kids younger than her) because she has special needs. Of the developmental kind.

Kidney failure is a slow-moving disease for which sometimes the symptoms creep up on you unnoticed. Not like debilitating itchiness or back pain, or lack of restful sleep, but like concentration and patience and follow-through. She did do most things, but just slower. Play, school, chores. She always needed help to keep up or we needed to slow down…last to finish everything.

I’m not the only one who has noticed. Her special ed teacher said he noticed something similar. That she was just doing better after the holiday break. Even her writing has improved; from wonky to straight letters, straight across the page with no lines. It’s like 3 months after transplant the light bulb just turned on, or at least the brain cells are getting enough blood with a working kidney and her body is getting rid of toxins instead of hoarding.

A new kidney means kidney function, which takes care of her body. And to those around her that want her off of dialysis and alive, it is amazing. But kidney function to the little girl? Energy to play, brain cells to learn, and the ability to use those things to build friendships and memories.

That’s what kidney function means to Quinny B.

Gage ended up going to the hospital last night for “inside chest pains” that he’d never experienced. We thought it might be indigestion and were hoping to let it pass at home, but Gage was nearly hysterical, begging to go to the hospital.

Gage (almost) never asks to go to the hospital and so, in my part of the relationship between advocate and child/patient, I have to hear him and react when his health is involved. And especially when he is in pain, crying regarding an unknown source.

Even though he was crying, holding his chest in pain, I probably would have waited a bit to take him. But he asked. And that was the deal breaker.

Turns out he has a pulled sternum muscle and he was very wired it being midnight and so Julian has to get on to him about his behavior. Typical Gage, he walked in the house saying he was faking it because that was his way of getting back at Julian. There was only one flaw in that statement: he would have never asked to go to the hospital. His way of not wanting to deal with being human enough to feel pain – which is the greater issue/problem.

Someone emailed me during the ordeal (thanks to twitter and FB) to see if I was okay and I said yes. The answer was yes because this is just part of it. And by “it” I mean raising these kids, and their issues, oh crap, their issues. If we freaked out every single time there was a “crisis” we would not be able make it through each day intact.

Note to parents with kids with failing kidneys: Do not continue reading if you are not having a strong parental day (Really, leave this site now). And go visit or Awkward Family Photos or Go Fug Yourself.

It’s no secret that Quinn was nearing dialysis before her transplant evaluation. Her kidney function leveled down at a steady pace slowly for a couple of years and then over the period of 4 months dropped at an alarming rate. If I had to guess, she would have probably had a catheter placed within a month that she had her transplant. If I, and a very few people involved in her care (doc local, doc out of towner, one coordinator and one case manager) hadn’t pushed for a preemptive transplant, she would likely be on dialysis until we could arrange testing (3 months for 1 person at a time) and surgery.

The same people had all seen firsthand the effects of quickly failing kidneys of a 7 year old child. We’d all (except for our case manager) witnessed Gage’s decline and I assume we all shared some silent guilt that he got that bad – without dialysis he would have died in a matter of weeks – before transplant evaluation, because by the time we got in for that he had very little function. His body was being poisoned from the inside out. He was in terrible shape.

I’m astounded (still) that some people in the health care field don’t think much about a child having to go on dialysis while waiting for a kidney, even when there are willing donors, and in some cases, like ours, multiple willing, potential donors. Some even have the power to change things, but don’t. It’s a sign they’ve lost touch with the impact on the child and the family. I know that dialysis kept my son alive and I am grateful for that option or he would have died. Don’t misunderstand that fact. I have gratefulness everyday for a machine that kept my son alive until Jody could donate her kidney to him.

But living on dialysis, while it is living, isn’t much of a life. What is life like for a child on hemodialysis (preformed at the hospital) 3 days a week?

For some kids, like teenagers, it begins at somewhere around 5:00am. They drive themselves or a friend or family member brings them to arrive at the hospital by 6:15am. Dialysis takes roughly 3 hours, a little more for some, depending on several factors. They come to the early shift usually so they can get to school around 9:30 or 10 and have a semi-normal school day. Unless they are so sick they can’t attend school and they are home schooled or served by their county’s homebound program, which is 5 hours a week of instruction. Many times they are too tired to participate in activities. So sometimes social activities are limited. Some kids, who have little family around them and their parent/caregiver, are driven to and from dialysis by strangers in cabs or on vans.

Kids who come in for the 10 or 10:30 shift are often little bitty ones – the under age 5 group. They don’t have school schedules to contend with so that is the schedule that is given – the middle of the typical dialysis day. There is rarely a choice of a time slot because machines are limited and help 3 kids per day of dialysis per machine. Kids in elementary, like Gage, come in around 2:15 which means they leave school early. For people like us, who are lucky to live near the hospital it’s easy, Gage missed the last 1-2 hours of school. Now, they want you be be there at 2:15 to be ready to get on the machine (takes 15-25 min) around 2:30 because the machine is going to run 3 hours (at least) so that is already pushing you to 5:40pm. But wait! If the machine you are supposed to be on still has a kid on it, you wait. Remember there are 2 other kids on the machine during the day. If they or their driver run late or if there is a complication with their health that slows things down, then well, you don’t get back in the area for prep until later and then 15 minutes for set up so you are pushing 3 or 3:30. Which means you aren’t off the machine until 6:30, or later. You are at the mercy of the time you can get on the machine.

What is being on the machine like for a kid? Well, if you are a teenager on the early shift, you sleep, or you listen to music and do homework, you read or you text, or you watch TV (each chair has a TV with DVD). If you are a little bitty one, you are in a metal crib, your parent or caregiver stands next to you to distract you from wanting to get out of the metal cage you are in. If you are a kid in elementary school or middle school you do your homework, watch TV, play video games. That is unless you feel nauseous enough to vomit for up to the 3 hours. You might feel fine, tired, drained or you might have a massive headache. It all depends on the rate they are running blood out of your body, cleaning it and putting it back into your body, which varies for each child.

That process can mess with your body and each body is different. So you spend a lot of time watching the docs and nurses fine-tuning the settings for the best dialysis arrangement. Except when they need to adjust it, which is more than it is not. They weigh you at the beginning and end of each session and record it. They record the settings on the machines. You are also hooked up to an automatic BP cuff for intervals of blood pressure checks. You come to hate The Cuff. If you are little and can’t be reasoned with to wear it and keep your arm still for the time you are on the machine that the cuff is monitoring your blood pressure, you come cry at sight of The Cuff.

If you are a lucky kid you won’t get an infection at your catheter site or an infection that starts there and moves to your blood. You can’t get the site wet so there are no showers, no swimming and a sterile environment even for something as simple as a bandage replacement – that means masks and gloves for anyone near the site uncovered or with an open edge on the bandage. Catheters have tubes that are hanging out of the body and well, accidents happen when you are a kid. Gage’s unfortunate accident was something as simple as a game of tag at school. Another child accidentally pulled the catheter and it moved just enough to create concern of it coming out (which would create tons of blood loss) with a simple tug of a shirt removal or hug and it had to be replaced. Many kids suffer infections, catheter replacements and hospital stays during their course of dialysis. In fact, all the kids I know from dialysis have.

If you are the parent you are kind of in the way. The nurses are up a lot going from kid to kid because they are recording numbers from the machine, the machine is beeping and they have to make it stop, and the BP machine is beeping and then there are the chairs for the guests. They don’t make them comfortable, you know. It sends a message that they don’t really want you back there. Unless you have a baby and it’s awake and crying to be let out of the metal crib. Then you have to be there standing (remember, it’s like a cage, and it’s high up, so there aren’t really any chairs that high, so if you have a little bitty one, then you are standing most of the time). If you have a little bitty one, you are praying they nap.

Part of our hospital’s routine was to provide a meal when the child leaves. So we order off a sheet and by the time we leave  the food is there, but that’s okay because you can’t eat on dialysis and the kids I’ve seen are pretty hungry. So for as long as you are on dialysis, at least three meals a week are served on cardboard trays, on your way out the door. Carried by the child if they can hold it and in Gage’s case, his backpack and Sally, Ugly Orange Kitty. Often times you just want to get home because your kid is cranky from not having had a break (unless you call the drive from school to the hospital a “break”) so it doesn’t take much persuading for your kid to agree to eat in the car. Off of the cardboard tray they’ve carried themselves. In the back seat of your car as you drive, usually in the dark, on the way home (not too long before bedtime actually). Unless you have to drop off or pick up a prescription.

You are getting off during traffic if you are on the last shift. Most kid’s dialysis centers are in Children’s Hopsitals in cities, so often times the commute time is made harder because of traffic in the city. But most of the time, your child is eating, so they are distracted, unless they aren’t feeling well and they are throwing up into one of those kidney shaped (HAHAHAHA really) vomit holders and you are leaning over handing them napkins and towels. Sometimes they have a headache so bad they aren’t talking.

So what does your child miss?

Everything connected with time. Time to build friendships and more importantly to learn how to build friendships if you are a kid Gage’s age. For a baby, you miss critical time to develop your little body and brain. You don’t hit milestones on time. For important pre and teen years, puberty is messed up. For all kids, growth is an issue, so your body is smaller than your peers. You don’t really have time see your friends because of dialysis and all your appointments. Probably some tutoring to try to stay ahead (or just catch up) educationally if you are school-aged. Therapy appointments if you are an itty bitty one. You are on a restricted diet so going to parties and out to eat becomes an issue (if you want to stay healthy, but if you are a teenager…it’s hard not to eat what your friends are and it’s a constant struggle within yourself.). Many of these issues mess with your self-esteem too, by the way. Not for all kids, but for kids like Gage, who were probably going to have issues anyway this just compounds the problems.

School is a challenge. Not for all kids I’m sure, but a lot. It could be from having to have so much time out of school or it could be because you can’t concentrate when you are in kidney failure, as one teenager told me was her issue. I’ve never forgotten the conversation as a teenager explained she would raise her hand in class and by the time she was called on she would forget what she was going to say.

Dialysis. It kept Gage alive and I would help him through all of that and more to survive it. But still. There’s an impact.

Obviously, as the caregiver, if you try to work and care for a kid on dialysis, it’s hard. Because you either have to work for yourself or you have to have a hellofan understanding boss. You can’t make money usually (I couldn’t figure out the perfect way, except for being able to send some emails) when you are at dialysis with your kid, which you desperately need to pay for life and for the self-employed,  insurance premiums, but what can you do. You hope that government assistance helps you enough. There’s the costs associated with being at the hospital. Parking, food (as a parent you skip lunch on dialysis days to get other things done during that precious time), and gas for transportation. Then there’s the dinner thing. At least three days a week if you are on the late shift like we were you don’t get to eat dinner together as a family (Gage usually went to bed close to when we got home). Siblings also miss out on your time if you are the caregiver parent. And what if you are single? You have to depend on family or great friends to care for your other children while you are out with your kid on dialysis. Because sick kids are first priority. Siblings are 2nd tier for the time being and they have to cope with that fact.

If you are married or a couple with a child on dialysis? You talk a lot about kidney failure and about what happened on dialysis. In a case like ours we were constantly talking about where we were in the donor testing process either for us or our (finally approved) non-related donor, Jody. That doesn’t leave much room for romance, you know? Because nothing says romance like cleaning up throw up or talking about what else your kid has missed during his time out for dialysis. Or talking about how you cope with the emotional effects of having a sick kid. Each day you play catch up.

Time for yourself as the caregiver? It’s great when you can steal a few moments for a movie, a hobby, a phone call. Even a bath or pedicure. But that doesn’t happen very often. And it’s made harder because when you are the caregiver it’s hard to let other people go with the child because no one knows them like you. For the few (literally few) times that someone took Gage (out of 78 times he had dialysis treatment) I worried about him, or it felt like I had to cover nearly every aspect of the visit and the potential mishaps they could encounter. It just felt easier going myself. If I wasn’t there, I worried constantly of what could be going wrong and how only I would know the exact way to help Gage cope (I know this isn’t the most rational thing, but you know what, I was his primary medical caregiver and that’s how I felt.).

If you are like me the one constant thing you think about is how to make your kid feel normal. But really, that’s impossible to do, even if you are as creative as me. There’s no way to make this feel normal. But you have to act like it’s normal or your head will explode.

The other constant things you think about are your financial stability, your kid’s education, their development, your job, your other child/ren, when will your kid get a kidney, your relationships and what you are ignoring in them and just about everything else because it all feels so out of control.

It is excruciating to watch your child go through dialysis. Heartbreaking to watch your child suffer the domino toppling impact of a progressive disease and poor health. It changes the very nature of the interaction of a family. Of a parent and child, a sibling with her brother, a husband and wife and their supporting loved ones. It changes everything that should have been, including the child they should have been.

So when people make decisions that prolong the process, donor centers have long testing times and the systems in place fight against a family for their kid to get a kidney, what they are really saying is….just put the kid on dialysis.

These pictures are from Gage’s first dialysis session on Friday, September 22, 2006.

Scared boy, worried parents.

All trying to hold themselves together and make this feel normal. Short session of dialysis for this first day with a regular session starting the following Monday and another 77 times.