August 15, 2012

Tomorrow is the big day! We pulled our travel trailer down to the hospital parking lot.  Upon arrival, while Scott got our trailer stabilized & electricity hooked up (we were going to need air conditioning), Nolan and I headed to the hospital for chest x-rays & lab work. It took a little coaxing to get Nolan to leave Dad & go into the hospital with me. I explained to him that the x-rays were just pictures of his heart & even did hand gestures & poses showing him how the technician would have him stand for the "pictures". I finally convinced him by bribing him with bubble gum and a movie after his tests were all done.   

The wait for the x-rays was a bit long, but we managed.  And Nolan and the technician hit it off and he was very cooperative.  I had explained to Nolan that I might have to stand behind the wall when the pictures were taken, but instead-I was able to wear a very heavy protective apron and stay with Nolan the whole time.  After the pictures were taken, Nolan got a toy and sticker and was sent on his way. 

This is where it gets tricky.  I'd done an excellent job explaining to Nolan about the x-rays, but I had intentionally NOT told Nolan about the blood work.  Given his past history with shots at the pediatrician's office, I didn't want to deal with any extra defiance on his part about NOT going to get blood work.  I was afraid-ok-just plain chicken-to let Nolan know that a needle would be involved in the next test.  We checked in at the lab and waited some more.  When his name was called, we walked in to the tiny cubicle and I sat him on my lap.  The lab tech was very good with Nolan, but this kid picked up pretty quick when the vials were laid on the tray-table.  (The kids have gone with me to my own blood tests numerous times).   

I'm not sure how many parents have experienced this, but Nolan turned in my lap to look at me, and the look said it all.  I was a traitor.  I was the worst mother in the world.  How could I let this happen?  How could I, the person he trusted the most, allow this person to stick him with a needle?  So what did Nolan do, held there tightly in my lap.  He stuck his tongue out at me.  Ok...the tongue.  I can handle that.  Then he pouted, "I don't want to".  Then his lips quivered.   

The tech gently told Nolan she was only going to "feel with her fingers" as she took his right arm to feel for a vein.  She told Nolan she was putting a "rubber band around his arm". No such luck.  So she took his right arm for the same procedure-still assuring Nolan that she was only checking his veins with her fingers and tried to amuse him by showing him how her fingers "bounced off his vein".  The kid wasn't amused.  In fact, there was no smile at all.  The tech whispered to me that she was going to get someone to hold his arm.  When she left, Nolan turned in my lap to burying his head in my chest and then the waterworks came.  First from Nolan, with pleading words I cannot recall.  Then from me, with the best encouraging words I could muster. Aagghhh...I thought.  I can't let him see me crying.  I'm the mom, I'm supposed to be strong for him-I know this blood work stuff isn't a big deal-I've been doing it all my life.  If he sees me cry, he think something is wrong with this test-that it's really bad. 

The techs returned to the room, and I stealthily tried to wipe away my tears so Nolan would not see.  The techs both did their best to soothe Nolan and he cried softly in my arms as the one tech held his arm and the other tech got the butterfly needle ready.  I whispered to Nolan that he needed to keep his arm as still as a statue and it would be over quick, and to my little man's credit-he continued to sob but held his arm completely still and the tech got the vein the first try-thank goodness.  When they were done and putting the cotton ball and tape on Nolan, I quickly grabbed my tissue to wipe my eyes and I was grateful I had chosen to not wear makeup this morning.

 After I set Nolan down and we were headed back out to the trailer, he did not want to hold my hand.  He did not want to look at me or acknowledge me.  I was being snubbed by a four year old.  I couldn't blame him.  As we were walking down the hall to the exit, Nolan's cardiologist was standing in a doorway talking to someone.  As we came closer, I heard him apologize to the person, but that he had to say "Hi" to a friend.  He stooped down to give Nolan a high-five-their usual greeting, and even Dr. Manohar was partially snubbed.  "We just came from the lab" I explained to Dr. Manohar who nodded, told Nolan he'd see him later, as Nolan kept on walking by.

I'm happy to report that not too much longer I was once again "the best mommy in the world".  We had a pleasant rest of the day with a visit from Nolan's Sunday school teachers and a special pizza party with close family and friends.  And now it is time to sign off.  We have to register at 6:30am and the surgery is currently scheduled for 8:30 am.  I'll try to update tomorrow evening.

Thursday, August 9, 2012

"...Be strong and courageous.  Do not be terrified...  For the Lord your God will be with you wherever you go."  Joshua 1:9

I used the above verse in Nolan's book and we keep reiterating it along with several others to our little guy.

We are one week away from surgery day. Today after Nolan's pre-op cardiologist appointment, the four of us took a tour of the hospital. Sara-the child-life specialist was wonderful with Nolan and he warmed up to her right away. She had a story to share with Nolan on her i-pad, and then Nolan showed her the book that we had made for him. She even read it to both kids and then Nolan showed her his "special stone". 

During the tour, Nolan seemed to take things in stride. We visited the Lobby where we'll check-in, the area where he'd change in to his "hospital pajamas" and wait before the surgery, the room where Nolan would recover and finally the playroom (best part).  

He was able to meet a few of the nurses on staff and even had the surgeon-Dr. Nasirov wave to us (as he was on a phone call). When Sara asked Nolan if he was doing ok with having surgery next week, Nolan gave a nonchalant response to the effect of, "yeah-it's ok".

Of course away from Sara, in the parking lot walking to the car, he changed his tune and told me, "but I'm not going".

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As of now, Nolan is scheduled for surgery at 8:30am on Thursday-August 16th. We will be headed down to the hospital on Wednesday morning with the trailer and for some pre-op lab work and chest x-rays. After surgery, Nolan will be recovering in the pediatric intensive care unit. Today we learned that Sutter has a ward designated specifically for pediatric cardiac patients. In this ward, the children have their own private room :)  We were also told, that unless the hospital gets full and needs to move beds around, Nolan will remain in the same room until he leaves the hospital.

Visitors other than immediate family members will be allowed after a few days of recovery.  The first 24-48 hours, the staff has requested that we limit the number of visitors in Nolan's room.  You are welcome to visit us, but please don't be offended if you can't see Nolan right away.  Scott and I will likely play tag with our time with Nolan, as we rest and refresh ourselves in the trailer in the hospital parking lot.

I plan to update the blog daily (probably in the mornings/or evenings) during our stay.  I'll try to send updates-but if for some reason I forget-just go directly to the blog to see if I've updated.  I'll plan to title the blogs with the current date of the blog so it will be easy to see if you've already read that update :)

The date is set

Our family had a nice few days camping with friends and then packed up camp this morning, came home, cleaned up & headed straight to Sacramento.  We had our pre-op appointment today with Dr. Nasirov and his PA-Nichole.  Leah & Nolan colored while we talked and discussed the timing of the surgery, the necessity of the surgery, the entry point into the heart for the surgery, how heart caths are rarely used anymore & how fare the techonolgy has come on the echocardiograms....etc..etc. 

I wonder how often Dr. Nasirov (Teimoor-as he asks to be called) gets asked these specfic questions from parents of heart kids :) 

The date is set for August 16th.  The surgery will take place at Sutter Memorial & Dr. Reddy (the surgeon who performed Nolan's 1st surgery) will be involved in his second surgery as well.  Nolan should be in the hospital-all things going as planned-for 7 to10 days, with a 6 to 8 week recovery period after surgery.  This just means no lifting heavy things (for Nolan of course), pushing/touching of his chest/playing rough, etc.

Our current concern remains the same as to how Nolan will handle all of this.  He still insists he is NOT going!  We told him that we'd be visiting the surgeon today & he knew we had come to "talk" to the surgeon only.  And although he sat on Scott's lap the whole time and colored during the entire conversation, he must have been so engrossed in his art that he wasn't listening :)

In the meantime, before we left for the surgeon's office I had given Nolan a red stone (Jasper) to use as  a "worry stone" and help him to pray to God when he was scared or concerned about anything.    The "stone" is part of a book I wrote for Nolan (about Nolan) and was illustrated by Leah.  I've not given the book to him yet as I "built" it through Costco to be a "hard-cover book" and it should arrive next week.  But in the book -Nolan receives a red stone from his parents and as he tours the hospital before surgery, he gets scared & holds his stone and reminds himself that he is "Super Nolan".  Along the tour-after holding his stone and building up his courage with his "Super Nolan" statements-pieces of armour suddenly appear on Nolan and in the end-after the tour and as he's going in for surgery-he's in a full suit of God's armour.


"Finally, be strong in the Lord and in his mighty power. Put on the full armor of God, so that you can take your stand .... Therefore put on the full armor of God, so that when the day ... comes, you may be able to stand your ground, .... Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, and with your feet fitted with the readiness that comes from the gospel of peace. In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows .... Take the helmet of salvation and the sword of the Spirit, which is the word of God.  And pray in the Spirit on all occasions with all kinds of prayers and requests..."    Ephesians 6:10-18


Thanks to all who have and continue to keep our family in your prayers.  I will keep you updated on any further developments.

*******UPDATE********

We have a pre-op appointment with the surgeon set for next Friday afternoon.  I'll send out another update after the appoinment, as we'll have much more information than I've been able to provide you with the last 8 weeks.

And for those just tuning in for the first time...you can read the post below...but for a quick synopsis:  Nolan will be having open-heart surgery sometime very soon.  The date will probably be determined at next Friday's appointment.