Recap of the day:

6:00 am – Gage wakes up and is still in pain. Lots of pain. He can’t sit up, move or stand. I’ve slept beside him on the floor in the living room. I’m encouraged he slept through the night.

6:45 am – Move Gage to the couch for the morning (only will let Mommy move him).

7:00 am – Leave a message for the cath department about Gage’s pain.

8:00 am – Start sending emails postponing Gage’s party.

8:30 am – Mommy goes to work. Check on Gage. Work. Check on Gage. Work.

8:40 am – Call and speak with cath doc who agrees this amount of pain is extreme, says to call when Gage gets to dialysis.

9:00 am – 12:45 pm – Work and rearrange Gage’s party by rebooking Shag*gy and Sc00by, rebook the church, cancel the donut cake, send some emails to parents.

12:45 pm – Carry Gage to car, prop up. Leave for Quinn’s class Circus performance, where Quinn is an acrobat. Julian follows in his car then sits with Gage in my car while I attend circus.

1:20 pm – Carry Quinn to car with me because she is hysterical that I am leaving where Julian pries her out of my arms. Get in car and drive to dialysis.

1:45 pm – Arrive at CH and search for abandoned wagon to carry the hurting boy. Park in ER parking and reach out to a wonderful security guard who finds me a wagon so I can stay by the car.

2:00 pm – Reach the dialysis floor. Set him on scale – while he is sitting in a ball – for pre-dialysis weight with him crying. Start relaying the pain story. Nurse pages nephrology doctor.

2:30 pm – Nurse calls and makes my request for the cath doc to see Gage and talk with me. He states he will be there in an hour. No, an hour and a half.

2:00 pm – Nephrology doc examines Gage. No noticable reason for pain. He seems genuinely concerned.

2:00 pm something – Dialysis staff gives Gage a cake, balloon and present and sing happy birthday. It’s cute but I’m sad too when I see a sign that says "I celebrated my birthday at Children’s!" signed by everyone in the department.

3-4:00 pm – I state that no one is listening to me and that I am not being heard. I step around the corner away from Gage and lose it.   

4:00 pm – Nurse calls cath doc who now says there is "nothing I can do" until it has healed for 2 weeks. Doesn’t offer talk with me on phone.

4 -4:30 pm – I need to walk outside. Vent with a friend I’ve made over the last several weeks who comes with a boy on dialysis. She feels my pain.

4:35 pm – I confirm with nurse that cath doc is totally ignoring my request. Can’t reach department on phone. Nurse pages nephrology doc to examine Gage now that he is coming off the machine.

4:45 pm – I contact a patient advocate who arrives at 4:55 and tell her my story about the service we have received over the last couple of days. I reiterate my low expectations rule to her except when my son is in pain and feel I am not being heard. She starts conferring with the nursing staff asking them why there aren’t pain med orders for Gage. I wonder the same.  The nurses and advocate are talking while Gage vomits. He hands me new Sally, the Ugly Orange Kitty, so he doesn’t get throw up on her. I declare that this is from pain.

5:05 pm – Nephrology doc returns and is suprised that I’m so concerned about Gage’s pain, he explains that he didn’t understand that was my major concern eariler. I’m speechless. Almost. I explain that I’m confused because since 2:00 I have been talking about the pain Gage is experiencing. I cry a little and explain that I’m not being heard – I wonder outloud if I am not communicating myself properly. Nephrology doc is compassionate and wants to know if I want to admit Gage or if I want to try to manage pain at home with some perscrption drugs. I state that I need some help deciding that you know, because I’m not a doctor (but I play one in real life). He would lean towards us going home and offering a better place for rest with intervals of stronger drugs. I struggle with staying or going. Julian says come home. Leave with perscription.

5:45 pm – Gage is laying in the wagon and looks about 4 years old as his entire body is covered in blankets. Wheel Gage out of dialysis and into the elevator down, stop on a floor and pick up four people, two of which are holding bibles. They comment on the cake and I say his birthday is tomorrow and they smile at Gage. Gage smiles back. Upon exiting the elevator one says "can we pray for him?" "Sure" I say "his name is Gage" at which I wheel Gage out of the elevator. Oh, I think to myself…they want to pray for him now! They circle Gage. One puts his hand above Gage’s head and starts praying outloud about health and healing and G0d’s love and healing power and they quote bible passages about healing both physical healing and spiritual healing. The other three are chiming in with amens, in His name and more. I watch Gage the entire time and he as a calm as I have seen him in a long time. He looks at each person praying for him and starts to smile. I think to myself that it is very strange that Gage is not reacting with a typical grimace on his face and a get away from me attitude. As the pray-er goes into the 4th minute his finger tips are touching Gage’s forehead and head. Gage is still smiling into the 6th minute of the prayer, even when the pray-er’s hand is flat against Gage’s forehead and head and the prayer gets louder. They end the prayer and tell me to believe. Have faith. Live in G0d’s love and light. I explain that Gage is to recieve a kidney soon, hopefully from a friend of the family and they smile. They tell me about healing and I say "I believe." I think to myself that I wouldn’t have met them had we been admitted.

6:40 pm – Arrive home. Carry Gage in while he yells "Mommy, you are not holding me right! You are hurting me!" Settle him in with a muffin and pain killer.

8:00 pm – Realize Gage has no party and no present from us and feel sadness for what is his life right now. I leave the house to fill perscription, grab dinner, and buy iP0d Shuffle. Pick up card too.

9:30 pm – Return home, eat dinner, call Grandma, who at the end of the call asks how I am doing even though she knows the answer.

11:15 pm – Try to come up with a headline for this post. Think about titling it Momma Beary Pissed. I think I’m sort of clever. Realize I should just say what the whole day was. Pain for Gage. Pain for me.

11:30 pm – Post this entry then try to load some songs on Gage’s new iPod. Realize it’s going to be a long weekend. Yeah.

UPDATE: Gage and been getting a pain killer every 4 hours without fail. The morning after this memorable day I forced Gage to sit up and stand up. And now that he has he’s not so apprehensive and it’s better. Still slow, but better.

Gage had to have an unplanned surgery yesterday to put in a new catheter and he is in a lot of pain.

Because he’s having trouble sitting up, standing and moving, we have to postpone his party from tomorrow to a date when I can make sure Shag*gy and Sc00by can be there. I will send a note when I can reschedule, but hopefully it will be next weekend or at the very latest, the weekend after.

Thanks for understanding.

Julia

We knew Gage’s surgery today was no big deal (in the big pictures of things). They were to put a new catheter (different kind) in a a different location during the hour long procedure. We came in early and were ahead of schedule when they gave Gage the loopy medicine and wheeled him down to the O.R. doors.

Apparently there was a shift in schedule and it didn’t get communicated to the nursing station to STOP with the meds to relax Gage and that the surgery was moved later by 1 1/2 hours. So back upstairs we went. Gage looped up and no where to go. Cause it’s always fun to try to keep him sitting down when he wants to touch the two TV screens he sees. "I see two Toms and two Jerrys Mommy!"

Several people came in to apologize that this happened to Gage. It did seem like something that shouldn’t happen, you know, because they arrange surgeries and doctors and syncronized timing is WHAT THEY DO.

I told the charge nurse that I’d learned over the last several months during our hospital experience to keep my expectations low. I told her as much as we are here it’s just the best way to operate if we’re to survive this thing without ulcers and anti-anxiety meds. So while I was annoyed that he was given drugs then the procedure postponed it didn’t send me into an angry upset frenzy. Did I shed a tear? Yes, but that’s because of my fragile state of late and I was wondering if anything can go smoothly for the boy. I just don’t have the extra energy to expend in being angry unless it’s about the level of care he is receiving – a matter of life and death stuff. Or a matter of Gage’s direct quality of life.

So, the catheter is in a new location…his left chest (the boy is not happy about this). And just another little annoyance for your reading pleasure; a doctor came and told me it all went well and told me to stay on the floor I was on and wait for word to come for me to meet Gage in the room. Then the nurses came looking for me and asked me why I wasn’t up in our day surgery room. Um…little communication problem today among the staff?

We expect he’ll be at school tomorrow and feeling fine for his Scooby Party for his 8th Birthday on Saturday. It’s going to be a wild one.

A couple of weeks ago Gage’s school nurse called me to say that during tag someone pulled Gage’s catheter. He’d been crying and sat in the nurse’s office for about 30 minutes. She called me and I talked to Gage. He didn’t want to come home and shortly after our call the nurse called me to say she returned him back to class when he said he was ready.

Gage is a compliant dialysis patient and takes very good care of his catheter and the bandages. He keeps it dry, covered, and at all times the bandages must remain stuck to the body, with no edges curling up, or he will certainly tell you all about how the "doctor said…" and so on. So he’s been concerned since this incident. I assured him that the nurses would let us know when there was a problem.

Last Wednesday the radiology guy* came and saw Gage’s catheter and deemed it appropriate to be attached back to his skin. It was a simple plan; on Friday we would drug him at the beginning of dialysis, apply numbing cream to the area and POOF! Stitches could be done in under a few minutes. Gage would be none the wiser.

But this is Gage. And it’s never as planned! In fact, it’s always an adventure! Even for others who cross his path!

Apparently Mr. Radiology has never seen a child on as much sedation drugs as Gage and still be HAVING A CONVERSATION ABOUT SCHOOL. Mr. R pulls out the needle and Gage is not a willing participant. Mr. R declares "these drugs aren’t doing a thing!" and "no sense in traumatizing him" and another plan was sought.

So today we learn that on Gage’s day off of dialysis, this Thursday, we must take Gage to be put under general anesthesia for surgery to run a new line (since he’ll be put under) for his cath to pull it up a bit and sew it back into his skin.

My poor baby. He can’t get a break.

*I know I should know this, but I have no idea if this person is a doctor or a tech or what, we call him by his first name but he sews catheters back into the bodies of sick kids, so really I’m confused by his position.

Since the kids have been diagnosed we’ve always dealt with Gage and Quinn’s ARPKD together. Testing together (Gage’s labs were just more frequent) was a regular thing and that made things at least easier if there is such a thing.

Gage’s disease took a turn in the bad direction last May-June and you find us here, going through dialysis with him while we wait. We wait for a confirmed test here and there until we can secure a date for transplant. And let’s just not pretend okay? There’s a chance this donor might not be able to donate and then we’re back to square one with Potential Donor #2. Which would seriously blow.

When Gage’s disease went all bad on us and he started dialysis in September, Quinn’s creatinine was 0.8 – considered stable in our world. So we didn’t worry. In December when she had her annual testing (which is a miracle that I even scheduled at all since she is the "stable" one) we learned her creatinine is now 1.1. While that number might have shocked me a couple of years ago, honestly it didn’t faze me at all in the big picture. When Dr. Kind’s nurse (nephrology here) called to give me the results ("stable") she mentioned that it’s been almost 2 years since Quinn was seen by Dr. Kind and that we should schedule her soon.

Thursday’s appointment with Dr. Wonderful (Bama) lead to more discussions about Quinn. First her liver is larger than Gage’s by the touch. Which means a liver appointment. And we should be discussing new meds at the next appointment with Dr. Kind – EPO injections, vitamin D and/or bicitra. So I am in the process of getting a referral for the liver doc. And her nephrology appointment is for the end of February. We looked back at Gage’s numbers and they were similar at this age. In addition, her behavior hasn’t been the greatest. Is it how she feels physically? I’d attributed it to the huge change of routine in her world and less time with the Momma. Something she’s not taken to kindly to, thankyouverymuch.

I have to say I have been in denial that Quinn’s disease progressed at all. With all the drama around Gage I just assumed we could get through transplant with him before we needed any in-depth Quinn intervention. And I have to tell you; I am not handling this turn of events well.

I’m on the verge of tears a lot of the day. And I am crying the ugly kind of cry in the shower. And I’m sad. And as my friend Beth said right after she offered to come and kidnap me for a margarita (or three) is that I just have to catch my breath – that I always just need time to absorb the new agenda. I have to get used to thinking my Quinn’s disease could be following the same time line and path as her brother.

When I left for Bama yesterday Julian wasn’t with us. He’d been stuck in another state unable to get home in time to go to the appointment which bummed me out, a little because the extra hand would have been nice, but really because I’d been looking forward to our family day together, even though it was a medical journey. That’s when you know you haven’t seen your spouse in a long time – a 12 hour day of traveling to and from a Children’s Hospital sounds like a good way to catch up, connect.

But it was not to be. Grandma offered to go and hang with us but I was worried about her stressing out A) because of all the medical talk B) because the kids are wild, wild, wild on trips like these.

It was a good appointment. And I need to digest it a tad. I hadn’t expected to hear that Quinn is at about the same place as Gage was at this age and that we’re in need of some medical intervention for the girl.

* note new ugly orange kitty in the wagon on the elevator…and note new reverse ugly black kitty that showed up with UOK just for Quinn.

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.