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Thursday, 23 December 2010

Sivana's kidney update

Have I mentioned yet how tired I am of doctor's appointments?  We have had so many of them (particularly since September) that I established a bit of a cross-referencing system to ensure dates and times are entered correctly in the calendar (both on the computer and the one on the wall).  Given the delicate art of balancing when Duane is home, when I need to nurse Sivana, when Isabel has to be picked up from school, nap times, etc... it is critical that we not make any errors with these appointments.

I applied this approach when Pediatric Nephrology left a message to say that Sivana's appointment was going to be on December 15th at 1:00 pm.  Great, it would mean finding a babysitter but we would make it work given the importance of checking up on Sivana's kidney issue.  The message asked that I call back to confirm which I did, repeating the time and date specified.

Eventually a letter was sent and once again I double checked the date and time on the calendar.  All was good.  We lined up my dad to babysit and the timing would be great... the toddlers would be napping, and given the two hour anticipated duration of this appointment, I could go straight to Izzy's school afterwards to pick her up, rather than drive all the way back to the farm and then back into the city to get her.  Not too shabby!

Lunch was rushed but eventually I got out the door.  Off we go to Children's Hospital where Children's Renal Clinic is found.  I know this hospital like the back of my hand given the ample time spent there with Isabel!  Renal clinic is in the same unit as Urology (which is where Anika was taken just last month) and a half wall away from Neurology (which is where Isabel goes).  Parking was a nightmare and finally I rush to the receptionist.  At this point, Sivana has woken up and is crying.

"Sivana Vaags to see the Nephrologist."


"Sivana Vaags... for the renal clinic at 1:00 pm?"

"I'm sorry dear, but we don't have a Sivana scheduled for today."

"You have to be kidding me... trust me, I KNOW that it is supposed to be today... I had a message, a letter, too!  Is there any way you could fit us in?"

"Renal clinic is not even open today.  Oh, but we do have Sivana scheduled for tomorrow at one o'clock."

And because this is more work than I can put into words, tears start flowing down my cheeks.  I had an appointment scheduled for that time but as is the duty of a mother, I dialed my husband on the cell phone, asked him to contact my specialist to cancel (with hopefully no penalty fees for the short notice) and put taking care of myself to the side...


Well, I did sign up for this when I decided to have five children!  I just had no clue we would spend this much time seeing doctors and specialists!

Anyways, where was I?  Oh yes, the idiot standing at reception crying because despite her best efforts to cross reference this sort of data... I failed to do it right.  I of course apologize for the tears confessing that I really don't know why they are flowing like this.  The women are great and are probably an open sob away from wrapping their arms around me to comfort me!  Sivana is wailing so I make my way to a chair to try and nurse her.  The ladies paged the clinician nurse who was still around and before I knew it, there he was standing before me!

The poor guy had his jacket on and everything!  Now I don't know if he was leaving for the day or coming in but given that there was not supposed to be renal clinic that afternoon, my guess is he was trying to leave.  But bless his heart, he weighed and measured Sivana, printed off the requisition for more blood work and showed me how to tape a urine-collecting-bag to her (poor little girl didn't make a peep while we are sticking this bag to her nether-regions!).  He was fantastic.  Sure enough, we WERE there for nearly two hours afterall!

Sivana's blood work distressed her a great deal.  She very seldom gets upset about anything but holding her arm down while the woman stuck her with a needle (and dug around for a while), my poor sweet baby was nearly beside herself.  She started choking and I still couldn't do anything as the woman was still drawing blood (and showing no support or concern whatsoever).

When it was all done, it literally took about five minutes to calm Sivana down.  And even when the sobbing stopped, she would look into my eyes with big tears and "talk" to me as if to say "What the heck was that all about mom?  Did you see what that lady did to me?  And what was with you helping her??"  This of course comes out as "Waaa!  Owwww.... owww Waaa!"  But a mother knows what her children are saying... well okay, that's what I would have been saying if the tables had been turned!

The next day, I arrive to the real appointment and greet the ladies at reception again with a smile... "Hey look, I am here for the right time this time!  And I promise, I won't cry today."

They chuckle and before I know it, I am in a room with Sivana talking with the nephrologist about the blood work and ultrasound results.

Sivana has four cysts in her right kidney now... that is her good kidney.  Blood work came back pretty normal so she is satisfied with kidney function at this time but we will repeat the blood work and urine sample in three months with a follow up appointment in six months.  Ultrasound will be done again in a year's time.  Sivana will be following up with her nephrologist every six months for the next few years.

She asked if polycystic kidney disease runs in the family.  As far as I know, it does not.  She said it is not likely that it is polycistic kidney disease, but given that cysts are starting to form on the healthy kidney, she cannot rule it out completely.  If you do a quick google on that disease, you will see that it is less than ideal... the inevitable end result is kidney failure leaving the patient on either dialysis or needing a kidney transplant.  So we are hoping (and praying) that Sivana's condition will remain the simple multicystic dysplastic kidney.

And so I type this as Ethan and Anika continue to chime over the baby monitor in their room... apparently they are in need of water... again.  Sivana is sleeping beautifully (as always) and the evening is quiet with the promise of relaxing somewhat.  No research tonight, no cleaning up, no administrative poop... I think I will simply put my feet up and give thanks to God almighty for the health He has blessed me with all these years... I cannot believe what a gift (and rarity) it is!  And if only I could send some of it my children's way!

I send prayers out to find you this winter's night to keep you warm with the sentiments of this mother's heart.  May my love spill forth to find you, to comfort you, to hold you safe in prayer.  May your own bodies be healed, cared for, nurtured.  And may you think of our little Sivana tonight as she fills our home with her sunshine and gentle nature... our blessed baby girl... Sivana Grace.  Amen.

1 comment:

Tania said...

Hey Rita,

I work at Children's Hospital Foundation these days and am at the Hospital Monday to Friday. I have the whole Dr. Goodbear room on the 3rd floor of old children's as my office. If you ever need a place to go while you're here or just a comforting hug. My door is always open to you. My number here is 787-8588.