This much I know.

The reason I know this is because I do it a lot in the care of my kids and they do it a lot. We wait for results of tests, we wait in waiting rooms, we wait for doctors and nurses to get back with us. We wait for kidneys to fail. We wait. We wait. It completely sucks. And this time is no different.

We saw the psychiatrist today and gave her the back story. She only met Gage briefly because, well, he has a very long back story. She only met Julian briefly because is wasn’t necessarily one of the days where Gage is compliant. He wasn’t mean while being non-compliant, but he was all over the place. And one of the things you can’t do with Gage on one of these days, is leave him to his own devices.

The receptionist had mentioned there were “toys” in the waiting room when I set up the appointment. Now you know where I am going with this, right? Because a few stuff animals on a sad, worn out shelf, in a large, open waiting room does not equal “toys.” So Gage was unimpressed with the “toys” but he did love the hallways that led to nowhere and he loved the scary basement, and he loved all the nooks and crannies in the place. In fairness to them, they said it is a new* office.

Gage will have to wait for medication for his clinical depression – if that is what she thinks he has when she is done with her evaluation. Who knows how long. When I spoke to Dr. Kind last night I told her this would happen. I told her I didn’t think I would walk out today with a prescription for my boy. “A month, at the very least!” I said. She was shocked. I said you know, I am sure it will be at least a couple of weeks for his evaluation and then reporting, then the back and forth. “Really?” she says. This much I know.

Gage has to wait. For almost every little bit or big bit of treatment. While I know in my reasonable type of person brain that this doctor is doing her job it’s still frustrating for my non reasonable type of person brain. I explained my frustration about this because I sincerely just want my son to be able to cope a little bit better. Oh, and I did mention I’d like to take the edge off of his death wish.

When I told the good doc how “I knew it! I knew it would take so long! It’s just never easy!” I can’t be sure, but I think she kinda gave me a verbal slap…asking/telling me that she was sure I didn’t want her to “do harm” because as a doctor, safety is her priority. She also said that it only took a day to get in for an appointment. While that is true, the wait was 4-6 weeks for the two doctors that were referred to me for this appointment. And well, the only reason we got in the next day was because she was NEW and doesn’t have any patients yet. So I don’t think that counts. I did tell her that it took me a week to find her and I had to go through a doctor in another state for a name. Blah, Blah, Blah.

I said, “I deserve the right to be frustrated, don’t I?” She had to agree. I have to say I did think it was funny that she told me I could have gone through the Children’s Hospital (transplant team) psychologist and that might have helped us get there quicker. HAHAHAHAHA! I know the two entities are closely tied in function and proximity, but that person just referred me to my own behaviorist! She didn’t even know about the Child Mood and Disorder Center.

She was nice enough, however slow this process will take. Gage talked with her; well he answered her anyway.

So, the plan, before she will consider medication is…

• Appointment with Julian for his take
• 2 Appointments with Gage
• Talk with Dr. Kind
• Talk with Special Ed teacher
• Talk with Play Therapist
• Talk with Transplant Team

Now, you know this is going to be some back and forth between this crowd of people. This is not a process that will happen quickly. I am saying that I think we have a 5-8 week for meds, and that’s IF she thinks he needs them.

So, we’ll just wait. And even though I just wrote all of this to get it out of my system…guess what?! It still sucks! That much I still know!

* “New” wouldn’t necessarily be the word I would use to describe this office. It’s in an old mental hospital. And it looks every bit like an old mental hospital. Like horror-movie, strapped-a-person-down-in-the beds, mental hospital.

Every year we make a trip to Alabama where Dr. Wonderful resides. It’s a rainy, icy day here in the South so that should make it interesting.

We look forward to these appointments (which is so wrong) because we always learn something new about the disease. And well, she’s interesting and she’s a doctor, but also a mother and mixed in there she’s a researcher. She’s a wonderful mixture of a medical provider and we love her.

Luke is now supposed to have his transplant this Tuesday. That is now the scheduled day for Gage’s liver biopsy and endoscopy. There’s no comparison really. Gage will be out the next day and Luke will be spending Christmas in the hospital. But after 5 years of knowing Luke’s family, Gage is in the hospital on the same day as Luke’s transplant. It feels strange.

Wishing and praying and chanting all good kidney things come your way Luke.

(Update: Luke was just diagnoses TODAY with an ear infection. Kirsten is unsure how this will all play out with Tuesday’s re-re-rescheduled transplant. They are however remaining hopeful that they "will just get on with everything.")

Julian is very nervous about Gage’s biopsy. I am not nervous. I don’t have the energy or time to be nervous. And I do believe that the kids pick up on when we are anxious. So, deep breath Julian. Do not act nervous around the boy about this procedure; even if you are scared to the core. In fact, be careful of the energy you put out there – the boy is smart and WILL pick up on it because he just will. He can pick up on every vulnerability we have and you know it is just to mess with us. Because that is what he does. He messes with us.

I had no idea what kind of weekend Quinn would have when we started out on an innocent camping trip. Leaving school a tad early with excited kids was a great way to enjoy the day and set up camp early. It helped immensely to set up camp and eat dinner before the thunderstorms hit. But it was all still good.

At the end of the week Quinn had been coughing a lot. The nurse at her school had called on Thursday and said her lungs sounded clear and asked if I was giving her cough medicine (um, why yes I am…thanks for asking). Friday was a better day for her and she was thrilled to go camping. Turns out the lovely side of allergies is sometimes an ear infection. Forget that she spent all weekend IN THE WOODS where the pollen had a straight line from point A to the point in her nose. Did she say a word? Not until Sunday morning when she said "my ear hurts" did we know. "Raging" was the word of the day Monday when discussing her ear infection in her pediatrician’s office. "In both ears."

And last month when I addressed the balance problem – complements of OMA – I was tempting fate. I was laughing in the face of the Picture Gods. Taunting them like there was no tomorrow. It turns out that an already injured tooth, a slippery slide, and slow responses of the hands when falling onto your face mixed in with a hearty dose of OMA, can cause teeth to be knocked loose. To the point of having to be pulled. Out. With. No. Novocaine. I know you are thinking "what kind of holistic mother is she? That she would promote a drug-free tooth pulling experience?" But it was the doctor’s choice. He intelligently had me step out of the room, applied topical anesthetic, and pulled. Took all of about 2 minutes. With some kind of "pliers" Quinn said. And Quinn? No tears. She just said "it hurt a little bit" and happily picked out her TWO treats out of the treasure chest while I regrouped. She is cute with a toothless grin. That she will probably have for at least a couple of years. She’s resilent and has a high tolerence for pain that is for sure.

If it weren’t for the kidney disease, medicine, OMA, balance issues, orthodics, and a brother who branded her with the end of campfire stick on the back of her hand, Quinn would have it made.

Gage and Quinn had labs last week. The easy kind. The kind where we are in and out in 15 minutes. Even if they both throw a fit and scream during the Drawing of Blood at this lab it would still be better than our 2 hour adventure of the Drawing of Blood at the local Children’s Hospital. It’s really all perspective isn’t it?

Both nephrologists said "stable" in their notes back to me. For those charting along with me at home: Gage – BUN 58, Creatinine 2.5, Quinn – BUN 35, Creatinine 0.8. Their liver numbers had been seriously high but now are just high. And that is good. Stable even. See? It is all the perspective in which we look at the situation.

For the first time in a long time Gage doesn’t need labs for 6 whole weeks. Quinn 8 weeks. I think that’s good.

So the meds are working. All 17 of them. I hate these meds. I love these meds. They are doing what they are supposed to.

How about an update on a behavioral front just because it’s fun. Gage is doing better in his new class. We get a daily report from his teachers and therapists about his behavior and participation. Check mark: Good. Line: Needs Improvement. Long ago we stopped with the X: Bad, because it was playing into the attention part of his problem. His notes from his new teacher usually say he needs "re-direction" or "reminders." There’s been no aggression or flat out disrespect since he’s been moved out of the other classroom. Not bad.

Yesterday she sent a note home asking that we talk to Gage about not "making noises" in class. She said she has a couple of kids that hum already and that his "da, da, da, da, da" was driving her crazy. When asked to stop, he didn’t. Yeah, I know what that’s like. Welcome to my world. I will say this though: he’s not tripping deaf children in the hallway. That’s something.

We’re back and we’re better for the visit with Dr. Wonderful. The news is that there isn’t any earth-shattering news. Nonetheless, when we leave her office we always feel like we know more. Like we can be better parents. Like she heard us. Like we have input.

Highlights:

Dr. W added a med to Quinn’s regime to help her excessive urination problem. We’re hoping to see a change in the output soon. It would be nice for her not to wake up pee-soaked. She’s at 6 total meds per day, most 2 times per day.

Dr. W changed some med dosages, added another liquid to Gage’s regime bringing his total to 10 meds, most 2 per day and that lovely shot once per week. Tuesday is our “special” injection day – Happy Valentine’s Day, Gage. When Julian smelled the new med he said “this isn’t so bad” and after I encouraged him to taste it as I do for all liquid meds I’m asking the boy to take, his face contorted in a “this is nasty crap” shape (Gage thought it was funny) and he became a tad more compassionate about encouraging Gage to take the med. I’m happy to report that after a week of the smells-okay-tastes-like-crap medicine, Grandma has come up with the perfect method. It includes us mixing the med with a tad of lemonade, then as we turn to put the lemonade in back to the fridge, we say “now don’t drink that before I’m back!” and Walla…med is gone from it’s Dixie cup. Gotta love a Grandma who can make that happen.

Dr. W would like us to consider having a more meticulous genetic test on one of the kids. The thinking is that it might allow us to find the kids’ particular gene mutation and that might help us find other people that are affected (by writing medical journal articles about them?) with this particular kind of syndrome – the one that includes ARPKD, Ocularmotor Apraxia and various other symptoms affiliated with another kidney disease – that I happen to be too lazy to look up the spelling for at this particular moment. This would cost a considerable amount of out-of-pocket cash and wouldn’t change the course of treatment, so we’re thinking it over. I admit it would be nice to know if they could identify a mutation…but then what?

Dr. W isn’t so anxious to put a timeline on transplant for Gage. She keeps reiterating that there is no way to predict. She’s on to us – no matter how many times we ask her, no matter how we phrase it a million different ways, or beat around the bush, she won’t commit. So, we wait. It could indeed be 12-18 months as Dr. Matter of Fact suggests, or it could be later. No way to know, no matter how many ways I ask the question.

Here’s the dance card from Dr. Wonderful from this visit. She loves to draw out what she is trying to explain to us common folk and we love her for it. It’s a strange dance, the one between Dr. Wonderful and us. Thank the Goddess she’s the one leading. That’s all I can say about that.

Alabama isn’t our home state. But it’s home to Dr. Wonderful and we love her. We make the trek to see her and we’re on our way tomorrow. And we’re happy to do it. Thrilled even, because we know at the end of the day we’ll have some answers. They might not be ones we like, but we’ll have them.

Dr. Wonderful is a compassionate, smart, well-respected doctor in her field of nephrology. We can’t imagine navigating the unknown world of our kid’s disease without her and we wouldn’t want to try.

So, I’ll update more in a couple of days. And um…let me know if you need anything at Cracker Barrel. We love to stop there on the way home for a break and to wreck havoc, dispense evening meds, eat breakfast (for dinner) and buy a treat for the kids. Almost like we’re on a short vacation. Ya know, besides all that talk about kidney transplants.

We got the call from Dr. Matter of Fact regarding the test results. Not only was it like hearing a bad heavy metal band while sober, it was heartbreaking.

While Quinn’s results reveal that she is stable, Gage’s revealed he’s in active failure. His labs show that the kidney failure is causing significant problems in many areas. We’re changing some meds – an increase in Procrit shots, either in frequency or dose, and a couple of meds are to be increased. His kidneys are actually shrinking, because of the scar tissue, and it is indicative of being closer to transplant.

Dr. Matter of Fact said she thought transplant would be in 12-18 months. That was not something I thought I’d hear yesterday when I woke up and went to the Governor’s office for a meeting about the Medicaid we depend on as our secondary insurance – which we will probably lose. The Doc also said to call her at home if I have any additional questions. Yeah, safe to say I have more questions. But not ones she can answer.

Last year I discussed The Urine Factor, here. Go ahead, I’ll wait.

Dr. Wonderful had prescribed a couple of drugs to help. It was something we were going to try. Because she is the world’s most sensitive doctor, she was concerned about Gage’s quality of life. And ours too. With Gage starting kindergarten last fall we were worried about his day at school and um the 4 accidents he’d have on an average day.

He started two drugs in July 2004 and after tweaking we had good results. He was urinating less frequently and wasn’t waking up soaked in the morning. We’d gone from changing his pull up at 11pm and 2am to one change between 11pm-2am. He was doing well at school. He was still having accidents, but not so many, and with the help of teachers prompting him to go during the day things were good. Tolerable. Stable.

Because one of the drugs can restrict blood flow, it can damage the kidneys. I mean, it can damage the already cystic kidneys. Yeah. Fun. So with the recent decrease in kidney function as a warning sign, the drugs were decreased. We saw almost immediate problems again with accidents during the day and soakings in the morning. More pee. More laundry. More monitoring his trips to the bathroom. More being the urine police. This should make the second first week of kindergarten fun.

Last week after a desperate “things are not so good” email to Dr. Wonderful (me thinks she wishes I only had her fax number) she ordered labs to see where kidney function is at after the med decrease. He’s at 1.9 creatinine and 77 BUN. So, we wait. Sigh. Adjust the meds. Sigh. Redraw blood for labs. Ugh. Wait.  Deep breath. Exhale.

Repeat.

Just heard from Dr. Wonderful, who, has moved along from "bears watching" last month, to "worriesome" this month. So…the dreaded decrease of meds that have been helping Gage pee less frequently. And with school starting. Not good. But neither is decreasing kidney function.

For those of you charting along with me in your own Excel spreadsheet – last lab creatinine 2.1, up from 1.9 last month, and .08 when he was diagnosed, just 3 years ago.