Back in the day, when Gage was happy, he sure loved his sister a lot. This is one of my favorite pictures of the kids. I think Quinn was around a year old. They were not only cute here, but they smelled good too!
I’m still looking back at good times during these not so good times.
I never thought I would hear the word BULLY and the name GAGE in the same sentence.
Help can’t come fast enough. I don’t care what anyone says about timing; and how long things take. It can’t come nearly fast enough.
Julian: “I just don’t know how we’re going to make it.”
Julia: “What do you mean, you just don’t know how we’re going to make it?”
Julian: “It’s all just too much. Work. This. With Gage. And now Quinn. Too much.”
Julia: “What a minute. This is not good. We can’t both be depressed at the same time.”
Julian: “I know.”
Julia: “BUT IT’S ONE OF THE RULES…we both can’t be depressed about our life at the same time.”
Julian: “I know.”
Julia: “Then stop. Because I called dibs on being depressed first this week.”
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…
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.
Quinn’s labs are showing that insane pesky high BUN at 92 that is so pesky, I have the good Doc saying pesky. A complete 20 point increase. Doc says it’s school and she isn’t getting enough water maybe, which I probably agree with, so we’ll move for water bottle in the classroom. Fine. We’ll retest in two weeks. Sadly that doesn’t change that she is staying dry even though she is my pro water drinker. A BUN of 92 is not acceptable.
Hard to shock me I guess, because the Doc used the T word with Quinn and I did not flinch once. Each and every time I talk to Dr. Kind we talk about how quickly Gage’s kidney function declined and how scared I am that will happen with Quinn and we won’t be ready. She asked about donors again to make sure we were thinking ahead. Why YES, we have been thinking ahead. About 7 years ahead, if truth be told. I think we have three people – 2 local – that will be tested for Quinn, if their status as WILLING and HEALTHY potential donors is still as it was about 20 or so months ago.
Quinn’s hemoglobin is just within safe but her hematocrit is low, so we are going to try that angle for EPO injections with insurance approval that will help with my cute girl’s energy level. Not sure insurance will pay at this point, but it is worth to check for her quality of life. Shots, then maybe, for Quinny.
So, if you are wondering how I distract myself from my son’s current death talk and clinical depression at age 9, pull up a chair and let’s talk about my nearly 7-year-old daughter’s impending kidney transplant!
(92 BUN, 1.8 Creat., 10.4 Hemoglobin, 30 Hematocrit)The person who set up Gage’s appointment said this to me, not realizing that isn’t the best option for a boy who is already behaviorally challenged and impulsive. Unless, say, she wants Cheetos in the fish tank in the waiting room. Cause he will do that you know.
We have an appointment for Gage at 1:00 tomorrow with a psychiatrist. I know that I want to meet with her without Gage in room, so I am not sure how that will work out, as Julian will be with me, but he wants to meet with the doctor as well.
When I called this morning to see about the two doctors at a new clinic for child and adolescent mood disorders the wait was over a month to get an appointment. I am pretty sure my voice cracked and quivered, so she did say a new doctor’s schedule was wide open. How new, I wondered to myself.
The transplant team* checked with the psychologist at Children’s (she knows us) and she recommended we call our behaviorist for psych recommendation. Already tried that. I think it is sad that I have to spend a week looking for a psychiatrist to see my child. It seems to me that there ought to be a better system when a parent calls (the team that sees him most) and a child is in emotional crisis – or any crisis that isn’t deem kidney clinic workable. A system so that someone on the kidney clinic team has a list (or hell, even one name) of doctors that have dealt with a child that has had medical intervention trauma.
There’s got to be a better way to treat the whole child. You know, to make it easier on the child (and their caregivers). Or maybe I am missing something, or went about this in a different way than most. I think sometimes the state of our healthcare system leaves everyone involved in treatment floundering. This was a perfect example.
I had to ask a doctor in ANOTHER STATE for advice. Then she asked her Chief of Psychiatry for help. Then he reached out to Emory CoP here, who got in touch with the Emory child clinic; and the Doctor-In-Charge gave me two names and two good phone numbers, including his assistant’s in case I had trouble with the urgency factor being recognized.
It just shouldn’t be this hard to help your child.
* I feel I must say that I love the transplant department for their care and concern, and this is not a complaint against anyone in the kidney clinic at all. They are a lovely group; they smile, the joke, they hug the kids too! Often, like during this type of thing, they show me great compassion. And they put up with a lot. And well, they save lives there, people! I just think the system could use some adjustments. I think we all just do things the same way some times because that’s the way they’ve always been done.
Dr. Wonderful forwarded me a note from the Chief of Psychiatry at her place with an email from the CoP at Emory with two names of ped psychiatrists I can call who will hopefully get us in quickly. If I am having trouble getting through I have a phone number of the CoP and the name of his assistant.
Some progress.
I still don’t know if they are on our HMO. Surely they are on it, right?
I still haven’t heard from Dr. Kind (local Quinn’s neph) and don’t yet have the names of ped psychiatrists from Gage’s therapist.
Incidentally, Gage told his therapist that he said that about the guillotine because he hates school and doesn’t want to go anymore.
I’m holding it together enough to keep things moving, no matter the lack of response so far. Am not holding it together in other ways. Like talking to Julian. Or Gage’s therapist. And my mom better not call right now, because I will completely lose it with her, and that wouldn’t help at this particular moment in time.
- Gage’s ped called and said they won’t prescribe anti-depressants. Says for me to get some psychiatrist’s names and run them by her. Alrighty.
- Haven’t heard from Dr. Wonderful since yesterday – assuming the Chief of Psychiatry there is waiting for CoP here to get back with him about ped people.
- Haven’t heard from Dr. Kind about her take on all this. Left a message for her Thursday (or was it Wednesday?).
- Left a message for the transplant team to let me know if they had any names of ped physiatrists affiliated with Children’s.
- Did get a lengthy report on all the negative things about my son, though (provided by his therapist).
- And on the way over to said therapist, Gage talked about a guillotine and about his own head being covered with a mask. “You know Mommy, the kind you have when they bring you up from the dungeon.” Calmly, I say, “I bet you feel so sad inside to think that…I bet Ms. Play Therapist would like to hear about that.” He said, as he might say, “I’m thirsty.”
- There’s the whole insurace thing. Must find someone on our HMO plan. Quickly.
Yeah.
I can’t seem to get anywhere fast with help. Am in tears through emails and calls to people.
Am I the only one that is glad the Olympics is over?
I had a great time watching all of it – and I mean all of it. I could tell I was obsessed when in the middle of the night I was watching sports I wouldn’t normally watch. And the going to bed at 3:00am or later was the norm for me, just a few days in.
But they were wonderful. Of course Michael Phelps and Dara Torres were awesome to watch. And that come-from-behind relay that the US pulled off so MP could have his eight? Had me screaming at the TV. But then there was the Marathoner from Kenya that took gold for his country for the first time and horrible story of bad sportsmanship from the Taekwondo fighter who kicked a referee when he was DQ’d. Or what about how the China gymnast controversy about their ages? The Australian diver who took gold from China, so unexpectedly won over China and overwhelmed at the thought. I can’t forget the heartbreaking hurdles event with Lolo. Oh, the American shot putter! Surprise! Loved watching it all, except that guy give back his medal on the wrestling mat in protest! Boo him.
So many stories. I was searching on the Internet for them because it was over and I couldn’t get my nightly fill last night. The pictures posted by Getty were amazing.
Just watching the Olympics made me feel proud to be American. But also to be human.
I sent Dr. Wonderful an email Friday morning about what is going on with Gage. I gave her the condensed version of what has happened over the last 60 days or so. Most of the email lead up to the fact that he was diagnosed with clinical depression and needed meds. The statements he’s made about wanting to die, well, that caught her off guard, as it has all of us.
She was very concerned, of course. She doesn’t want us to work with someone who isn’t experienced in anti-depressants for young children – a “generalist”- ruling out our pediatrician.
I am not thrilled about this. In fact, I am less than thrilled about this. It will slow us down and it will require another few appointments and an assessment and evaluation and a report and more time and I hate that about this new direction.
But I trust Dr. Wonderful. She wants meds for Gage to be worked out by a psyhcitrist and I can appreciate that, I guess. I have told her that for me, time is of the essence. I don’t want to wait weeks to get where we need to be. The place that we know we need to be.
So her Chief of Psychiatry, in another state, is reaching out to the Chief of Psychiatry at Emory. I’m hoping they can shave off the typical weeks it would be for us to get an appointment for Gage.
When I complained to Dr. Wonderful that I didn’t want to put Gage through another evaluation, she said she understood and that I could just take her recommendation for that. The problem is I respect her opinion too much to ignore it.
So, we’re two steps back, as they say. But to me it feels like way more than two steps.
