Often times when I am joking about the ridiculousness of my life Dawn tells me (sarcastically, cause she’s good like that) I should just do a gratitude list, she says that activity will help me look at the world differently, peacefully even. Well, Dawn, this one’s for you.

I’m glad that a kid didn’t throw up their anti-rejection meds today.

I’m glad I didn’t have to hold both my kids down for lab draws today.

I’m stoked that neither one of my kids said they wanted to kill themselves or die.

The school hasn’t called me in over two weeks because one of my children were doing something unbelievably bad.

I didn’t say kidney failure the whole weekend relating to any kidneys in our house.

Children’s Hospital is billing Medicare for $50,000 in medical expenses not paid by our insurance for Quinn.

Gage’s twice-a-week tutor (who came out of retirement) is picking up Gage from school today and has agreed to go to his IEP annual meeting with us on Friday.

Gage only has 3 appointments for mental health, one for medical health, and two for tutoring this week. Quinn only has two!

I’m going to take a couple of days off from the blog. I’ve been faced with some disturbing news about what I’ve been sharing about our family online and I need to process what I think about it. Honestly, I’m a bit shocked and hurt and I need to figure out the best way for me to deal with the news.

When I come back I hope to have a direction…keep the blog public? Make certain posts private? Remove the blog all together and just keep a journal? Screw it all and keep going as is? I’m torn because I think our story is an important one to tell, yet I don’t want sharing our story to cause more problems for my kids. Don’t they have enough? I’d rather they didn’t also have to worry about parents taking the information, talking about it negatively with their kids, who then will use the information against the kids. I’d rather parents not use the information to isolate my kids. I know, demanding, right? It’d be great if they used the information as a teaching moment of tolerance and acceptance, compassion and understanding. To teach themselves and their children.

I write my blog for me. It’s comforting to know there are witnesses to the good stuff and the bad stuff and writing here as been a safe place to land. It’s been good therapy for me and I’d like to continue it. I just need to figure out the format.

On my best days I think that sharing our story will teach someone tolerance for (all) kids with differences. Sometimes I think another parent might relate. If I share what is going on then as my friend Lori puts it, I will “Own My Message.” Because people will spin the story – most likely wrong – and speculate and if I want them to have the story right, then I had better well provide what I want out there in the world.

Never did I think my words here – always truthful and for my kids – would hurt them. Apparently a failing kidney (or 2) garners support but emotional problems will get you whispers, gossip and shunning.

If you don’t read it here or hear from me directly you don’t know if it’s accurate. If you’ve got questions, call me, email me or comment here. If you are around someone who is gossiping, send them to me. If you have negative things to say about my kids, or if you are worried about your kids being around my kids, talk to me. If you want to speculate, gossip and teach your kids to do the same, shut the hell up.

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.

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.

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.

Most days I can suck it up and get through it but today for some reason many things related to caring for Gage and Quinn are annoying me greatly. It’s the stuff that is connected to them being sick kids. Here is a list, but in no particular of the level of annoyance.

- Pharmacies. I’ve made no less than 7 calls about the SAME prescription. The doctor says she called it in. The pharmacy says she didn’t. Of course, she is OUT today.

- Pharmacies, Chapter 2. We have some 20+ medications to refill. They are mostly on different days (no matter how hard we try to get them on the same refill days, it never works) and have different number of refills left. So please, person, don’t get snippy with me when I’ve let a refill slip to ZERO, help me get a new one.

- BCBS is making me use Precision mail order pharmacy. I’ve not had a good experience there, I’m sure someone has, but I would not be that person. One of the drugs that Quinn needs is a liquid (she’s too little to take the first mg pill they offer) and instead of the 3 month supply of pills I can get (making the times I have to talk with them lower) we have to order it monthly about 5-7 days ahead, if we would, you know, to make it easier on them.

- Lab draws – Quinn still needs labs twice a week. She only needs to go to be seen in clinic every two weeks so on the off week we go to a local lab with standing orders. But she wants to go to another lab close by (same company) because A) We’ve seen some roaches. B) There is one woman there who very possibly HATES her job more than anyone I know and Quinn has noticed that. Last week she said, “She is not a happy person.” But the company (lab to lab for THE SAME COMPANY) doesn’t share standing orders. So I had to get another form and scan it and email it to the transplant team (I swear Kerrie, you ROCK!) to fill it out AGAIN, meanwhile we missed labs yesterday and today making them once this week. Bad mom.

-Traveling with sick kids. We will be going out of town and Quinn needs those labs but BCBS wanted me to pay out of pocket for the labs (4x, $400-600/pop) and then appeal that they will not pay for regular labs out of town. So I called our very capable (no longer on our case) case manager who just called me with the authorization code to do them and have them billed. She, too, saw the ridiculousness in the situation because you know, it’s to MONITOR A FRESHLY TRANSPLANTED kidney they recently paid $175,000 to do. But whatever. Amber ROCKS as well and after several calls, new forms from the transplant team, 3 calls to the lab 20 miles away from said vacation location we are set. I think.

- Traveling with sick kids, 2 – trying to make sure we will have all drugs in our possession when we leave. Yeah. Not going to happen. FedEx anyone? That will not go well. I can for sure predict that I will be spending some time out of town tracking back a package, pleading with the customer service person that there are kidney-saving drugs on board a truck somewhere.

- Filing for services. Period. Too much paperwork, wait times are unbelievable. Medicaid and Medicare. Which I need to do, but I swear I cannot focus on it until next year.

- Management of a lot of people – the people who manage the kids for school and health, well, there are a lot of people. They manage their education and their kidney function. But you know what? They don’t just do that on their own. I manage them. When I’m working out a situation (like refills, testing, etc.) rarely do I get to talk to the person that handles it. There’s a lot of people in between me and the managers. It gets old.

- Forcing stuff – Quinn is having FITS about one of her meds. She takes pills with ease, and has since before she was 4, but nasty tasting liquids? Lately it’s been a battle. Taking this med is non-negotiable. That doesn’t always bring out the patient, child-adoring mother in me. While we’re talking about non-negotiables let’s talk lab draws. She is tired of labs draws. Twice a week, 3 sometimes. There are screams and they are loud. Throw in an IV infusion to the mix and there is a lot of forcing and holding down the child on my part. I want to be patient, but again? The patient, child-adoring mother doesn’t always have an hour to cajole, in fact, we never do. And that really sucks for her. And when I let myself think about how that sucks for her, I cry.

The relentlessness of the above list makes me sad. Because it never ends. Literally. Never. Ends. Next month I’ll be annoyed about the same things but hopefully not all at once. The thing about it is, I would do anything for the kids to be well and well-adjusted but there are so many strikes against them that it feels like we are always pulling ourselves uphill.

But I guess that is another post entirely.

Squeamish Advisory Alert

Friday, August 14 – Around 4pm Gage points out a bug/spider/something bite that is irritated. It’s about an inch and a half to two inches around, has a clear center point (white headish). I call the ped at 8ish and tell her that at 4pm I circled it with a pen and it hasn’t changed in width but maybe has in height. She said she would just watch it but seeing as how Gage is immuosuppressed, she confirmed that I should call the transplant team.

Saturday, August 15 – We don’t notice a change. Gage didn’t either. So he and Julian went camping overnight (in the city with scouts) and returned Sunday morning.

Sunday, August 16 – By late afternoon it’s changed at lot. I don’t know what it looked at in the morning because I was not there, but apparently none of us checked on it – or it didn’t bother Gage enough for him to notice. Around dinner we started taking about calling the doctor again. During the afternoon I was sleeping off a kidney stone attack that nearly landed me in the ER myself, but luckily it subsided. I slept off some serious drugs from 5-8. By 8pm it had rings around it, like a target about 6 inches wide at its widest area. I called the nephrology team about it but by the time she called back, Gage was on the way to the ER with Julian. Julian insisted (didn’t have to very hard) on taking Gage to the ER (first time ever) because we both feared a kidney stone attack. The ER put warm compresses on it. They tried to drain it. The perscribed an antibiotic. Julian and Gage were on the merry way and home around 12:30am. Gage went straight to bed.

Monday, August 17 – We woke Gage up for school like any other morning. The bite was better (no ring anymore) but still inflamed. Not particularly tender and not hard. Not bright red, but light red. Not much change throughout the day into the evening.

Tuesday, August 18 - It looked worse. At school I guess Gage picked at it and they covered it with a band-aid. By the end of school he was holding his arm up saying it hurt. Tuesday night Julian had dinner with a client and while he was gone I checked the thing and it was worse. So I called the ped again (happened to be the same one from Friday) and recounted the entire story and we agreed that I would take him into the ped office in the morning, or if it looked worse I would take him to the ER. He didn’t have any other symptoms (although honestly, his prednisone can mask a fever, but can’t mask you feeling bad – and Gage was acting like normal Gage).

Wednesday, August 19 - Before I woke him I knew I would take him to the ER. I just wanted someone who’d seen some nasty bites/infections to see it. Interestingly enough, the ER is strangely quiet at 8:00am on a weekday. We were seen within minutes of arriving and within 15 minutes of that the doctor was taking admittance.

- 10am – I start felling a twinge of kidney stone pain. They start the first round of IV antibiotics.

-11am – I am feeling a lot of pain, but am on a conference call for work (client in office with Julian).

-12-3pm – It’s all kind of a blur. They admit Gage, move him to a holding room. Then move him to floor 5, we settle in. During this time I call my urology office to see if I can swing by for a pain shot – I EXPLAIN MY SON IS IN THE ER AND BEING ADMITTED TO THE HOSPITAL – and they say no. There are no doctors available to approve it and the “supervisor” said I since I had a follow-up appointment anyway Thursday (today) I could discuss my pain medication needs. I cried, I sobbed. “I can’t believe you aren’t helping me! You have 5 doctors and none of them are available? I was there on MONDAY, so you can confirm I have a kidney stone that I am trying to pass! Yeah! Thanks for all your help! So helpful you have been!”

Some time during this period my mother joins in the fun that is watching her daughter wither around in agony while comforting her grandson, during the admissions process. You know I am the favorite child, right? Cause I know how to show them a great time. And my parents get to do extra stuff for me! Each and every person that entered the rooms (we had 4 total) got a quick, “Hi, I’m his mom, I’m passing a kidney stone, that is why I look like this!”

During that time I also said things like this:

“I know, it IS worse than labor!”

“I know, I called my doctor, he isn’t in.”

“I know, they are supposed to blast it on Friday.”

“Yeah, I know, I do have pain meds, but I’m throwing up so they aren’t going to help until the pain subsides.”

“My doctor’s office WON’T GIVE ME A SHOT for some sorry-ass reason.”

“No, I won’t go to the ER cause you are admitting my son to the hospital.”

“Gage, get down from that cabinet! And put the bed back down to a bed position!”

By 5pm we’d seen 10 docs and residents and fellows and everyone had a good look at the nasty infection. Some believe MRSA…Staph…Spider…No spider…Cut/infection…so they are growing or not growing cultures.

Thursday, August 20 - There’s a lot of discussion of lancing the thing. To let the surgeons come take a look to see if they think it will help. The newbie doctor takes a look then is going to talk to the head guy. I step into the hall, because when the newbie doctor said “Bedside” surgery to lance it I kind of contorted my face. “Um, no, you can’t take a knife to him at the side of the bed with some meds to make him tired. One, it doesn’t work. Two, he has some unresolved issues around some medical stuff that are adding to his emotional problems and I won’t let you try to cut it in front of him. If you want to do that we need to put him under. You could even do it like they did his biospy…what was that drug? Started with a P. But no, the rest do NOT work – Gage could put a lego set together doped up on that stuff.”

By the time both docs returned a couple of hours later (The cutie docs must have had some flirting to do!) Gage had noticed it started to drain. Gage was open to trying to squeeze it and the docs said sure, but let’s all get some gloves on…and so the doc and Gage, together, squeezed out the worst kind of infection yucko stuff I’ve ever seen. And there was a lot of it. It was fascinating and disgusting. More than once Gage, smiling, said, “Daddy would be throwing up right now!” and “Daddy would not like this.”

It is not done draining. And it’s still quite red. It’s not as hard or as tender as it was but we are certainly not on the road to healing yet. He’s had three IV treatments. You see, they have to measure the amounts in his body because the drug leaves through the kidneys on the way out. So there’s a balance of infection fighting – kidney protecting going on here. We could be here a few more days. I know I am not holding my breath.

And I’m not holding it because at 5:30am tomorrow I arrive at my doctor’s office for the blasting of the two remaining kidney stones. The procedure starts at 7 and I’m told I can be back here with Gage around 11.

I  had a quick little pity party with Julian where I said, this was ridiculous, it was tooooo much to handle, it’s so overwhelming, it’s so much to deal with, blah, blah.

I considered NOT doing the procedure with them because of the IGNORING MY PAIN FACTOR, but I like my doctor and he was on vacation, and I shouldn’t fire him without telling him why. Plus, I only have a few week window to get these out before Quinnlin is on this very wing recovering and I will not be taken down again during one of my kid’s transplant recoveries by a kidney stone.

How insane is it that I just wrote that sentence? And how is it that IT IS COMPLETELY TRUE. This really is from the I Can’t Make This Shit Up file, isn’t it? Is it me? Or are we the family you look at and think to yourself, “Well……at least we aren’t them!”

Really, we’re that family, right?

Come on, you can tell me.

Later, I will post a couple of cute pictures of Gage and Quinnlin, when Gage actually let his sister touch him, by letting her sit in his bed, NEXT TO HIM, IN THE SAME BREATHING SPACE AS HIMSELF, THE LORD OF ALL THINGS SHE DOES, even though he protested at first, saying:

“You are going to get your own bed here in a month, geeeeeeez!”

For some reason I have a lot going on right now. Client is in town tomorrow during the day, spider bite management, kidney stone management, Walk for PKD work, regular (hopefully paid) work, Quinn’s pre-transplant schedule, bathroom quick fix remodel, house organization, yada, yada.

Gage’s spider bite is causing greater concern. I’ve been twittering about it but basically he went to the ER Sunday night after watching it over the weekend and a discussion with two doctors on Friday night. It spread from a two inch area to a five (yes 5″) inch area. The ER doc tried to drain it (and NO, it didn’t work) and started Gage on antibiotics. But tonight it looks worse – crater-like. In case you wonder if that is GROSS, wonder no more, it IS GROSS. This morning he thought it was cool to gross me out but now? Not hardly. The second he heard me talking to the doc about dead skin, and injections and IVs he kinda got over how cool it was. His arm hurts too, which is interesting because he’s not using that arm for anything (it’s on the forearm). I have to say though, it BITES that every little thing is not a little thing with our kids.

I demand that you, right now this very second, appreciate the fact that your life doesn’t suck like mine.

Really. Take a moment.

My kidney stone/s are acting up again. Procedure is scheduled for Friday. Thursday they will do a check to see if it is still there so let’s all do a collective good thought for a good hearty, painless, passing, shall we say.

Gage had a decent day today at school. Monday through Thursday does his homework for up to about 25 minutes after school (sometimes it is just undone work for the day, but really, have you EVER heard of teachers offering to do this?) and he (new) special ed teacher (who is his old regular teacher) was done her girl came in and said, excitedly “Can you test me on my spelling words, mom?”and I look at Gage’s teacher with envy. And then I rolled my eyes.

Why? Why can’t my kids want to be tested on their spelling words? I told her “I know, I have done something very, very wrong and I am being punished.” She laughed because she knows. I laughed because I am right!

And that my friends is how I cope. I make insanely ridiculous jokes about my kids and my life. That and many times during any given day I only think of the next few hours at a time. Literally.

Like right now I am planning the next 3 hours when our family will be awake. Like a finely-tuned machine.

And you are crazy if you believe that. Yes, believe the three hour thing, but no, do not believe the finely-tuned machine.

Not for one minute.

I realize that a lot of different kinds of people have to make up the world to make it interesting. To make it work. I really do.

But I seriously do not get some people who are always in an attack mode. How miserable it must be to live that way – to always think you have to do that in order to solidify your own importance. The really sad part about living this way is that you miss out on a lot. I would think you miss out on developing relationships that can be worthwhile, you miss out on good connections and possible good times.

Life really is too short, don’t you think? On the other hand, there are just some people who have to live that way because they’ve done it so long. It becomes a part of who they are and it’s just sad. But it is the reality of living in a world where our differences are as important as the reasons we are alike. It takes a lot of people to make the world go around and I recognize the fact that the world even might need people who are always on the defensive.

But I wouldn’t want to live that way.

Heavier than usual. I can’t fathom doing an entire post that includes paragraphs. All I can muster and have time for is a list. A list that will demonstrate what is heavy to me today.

- I’m dealing with the afterglow of Quinn’s transplant scheduled. This is also known as extreme panic.

- Gage being so shut down is as sad to me as it was a YEAR AGO when he started talking about the day he almost died. He hasn’t been right since.

- On Monday I had to tell Julian it was MY turn to be depressed about our life. So I told him to shut up. Loving, right?

- Am working through issues with my nephew, who lives with us.

- Yesterday I told Dawn that I know I make it look easy. This is sometimes to convince myself so that I think it’s easy.

- I registered the kids for school and I cried something like 4 times while I was there. You might say to yourself, Really? I did. I bet you thought that was only for parents of kindergartners. Nope. That is apparently also for mothers of 2nd and 4th graders, who have a life-threatening condition with learning problems. It could have started in the morning with me watching this story and thinking about my kids as adults and needing more kidneys.

- Work is slow and has me completely freaked out that during Quinn’s recovery I’m going to have some billable work but won’t be able to work. The work pays the insurance. Insurance that will be paying thousands of dollars soon.

- Quinn was approved to have a matched funds fund raising account with a non-profit. They match up to $10,000 and it goes towards medical costs and medication in the future.

- If I had time and money I might seek therapy myself but the blog helps with that, so thank seriously the person that invented the internet. That was Gore, right?

- I had one of my best friends from high school send me a private message on FB and she was so sweet because she wants to do something that helps. And yes, I will take her up on that.

- I’m feeling the pressure to get the scrapbooks up-to-date, so anyone that wants to come over and crop some 1000 pictures and slap them into books would be welcomed.

- We have the workings of a new sideline business that we’re starting. I know, crazy, right? But really, it’s been a good distraction.

- The house is a mess. And I need to get some organizing done. Sometime in the next 7 weeks.

- Kids need their labs done. And I need to reorder meds. And Quinn needs her shot. Where are you when I need you Leslie? Tennessee! That’s not right.

- Since it’s school time it’s time to dig out last year’s IEPs for the kids and schedule some meetings about this year. Cause looking at those and working with those are always a pleasure.

- Thank God that the Walk for PKD was moved to November 15. But there is still the pressure to firm up sponsors and logistics before Quinn’s transplant. I know, please don’t tell me or think that this is something I will give up, because I won’t. Remember? I don’t want to give up things I want to do for things that I have to do.

- And if that’s not enough, I need to have the last two kidney stones blown up out of my kidneys. I get to pick a Friday before transplant for that to happen. I have 7 weeks. I want it done because well, we don’t need a repeat stone attack while Quinn is in the hospital. And my deductibles have all been met.

So, that’s all I can think of now. How’s your Thursday?