August 23, 2012-We are Home!

"Because he loves me," says the Lord, "I will rescue him; I will protect him, for he acknowledges my name.  He will call upon me, and I will answer him; I will be with him in trouble, I will deliver him and honor him.  With long life will I satisfy him and show him my salvation."  Psalm 91:14-16
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Today marks 1 week from the day we trudged our reluctant soon-to-be-Kindergartner , not to school, but to a hospital...to endure the open-heart surgery- that even up to being wheeled through the OR doors, he denied participation in!

Now here we are, settling back into the daily routines of home life.  Our biggest challenge now is trying to keep a 4-year old boy from doing 4-year old boy stuff.  And even simple stuff, like how he puts on a shirt, how he climbs into chairs and the car, how he plays with his cars :)

But we're managing and he's slowly adjusting.  I'll be completing his "count-down" calendar today to when he can start resuming his "normal" activities such as taking a bath, climbing into his bunk bed, etc.

I've added some pictures from our last 2 days in the hospital.  Thanks to all of our family and friends for the prayers, well-wishes, visits, cards, e-mails, offers of help, the outpouring of love & encouragement.  We are truly a richly blessed family.

 

 

 

August 20, 2012-Homeward Bound!

Short Version:  Praise the Lord-We are going Home!

Detailed version: For the record-I'm writing the detailed version to have a record for Nolan when he gets older.  I've enjoyed reading my mom's detailed, handwritten versions of some of my hospital excursions and wanted to leave that legacy for Nolan if he so desired.

This experience here in the hospital with Nolan has been amazing!  Simply Amazing! 

Amazing that from 8:30 am to 8:30 pm Sunday, Nolan had NO pain meds-or more importantly, didn't need them.

Amazing that last night before bed, all he had was "regular" children's Tylenol (as opposed to Tylenol with Codeine) and he slept all night with just a bit of stirring and dreaming.

Amazing that he was walking around the hospital yesterday to go to the play room and wasn't tethered to any IV or machines.

Amazing that after 4 days post-op we are going home!

So I didn't go into any detail regarding Saturday's events.  Saturday was a huge day for us with the pulling of the chest tubes, removing the central line and starting on bland solid food Saturday evening.  Nolan had two chest tubes placed inside of him to drain excess fluid from around the lungs.  These tubes drained into two chambers at the end of his bed and each shift nurse could measure the amount of fluid being drained from either Nolan's left or right side.

So a little before 9am, Dr. Nasirov's assistant-Nichole came to tell us they would be removing both chest tubes!  We had been under the impression that it would probably only be one.  (We later learned that our nurse Karen discussed with her to either remove both or none because Nolan has some anxiety when it comes to removing IV's, medical tape etc.  So I guess after checking the chest x-rays and with both lungs clear-it was decided both could be removed).  A little bit before, they gave Nolan some pain meds .  A child life specialist came up to help distract Nolan (it didn't help-by then he was on to us).  We did our best to distract him as Nichole removed the bandages (Nolan is very sensitive to the tape removal) then the stitches from on tube.  Because Nolan was a bit "worked up", we had to take a few practice deep breaths.  Then Nichole pulled on tube out.  It was inside Nolan about six inches. She started working on the other one.  When she went to pull that tube out, it kept coming...and coming....and she paused at one point & then pulled and it "popped" out splattering blood on her dress, the blankets, some of child life's toys....it was actually amusing and Nolan loves to tell the story of the "blood squirting everywhere".  That tube was inside Nolan at least 12 inches!

The removal of the central line in the neck was not as exciting-but Nolan did have issues when the tape was coming off.  It seems to be all about the tape. 

Uncle Russ came to visit Saturday evening.  He had dinner with us and even stayed the night in the trailer.

Saturday night Nolan slept better-which helped Mom and Dad sleep better too (for the most part).  Around 5:30am, I was in the chair and noticed Nolan tugging on the tape for his pulse ox and then he pulled the whole thing off.  He was still asleep, but the alarm sounded and I got up to put it back on his finger before his nurse came in to see what the problem was.  After I had it reattached and the monitor registered that it was working, I noticed the tape on his other hand was flopping around and then noticed that his IV was out of his hand.  About this time Scott had woken up, so he went to get the nurse and we just took the IV off.  So now Nolan was down to just one IV-heplock in his right hand. 

Uncle Russ returned Sunday morning and stayed until Grammy and Aunt Susan came with Leah.  The smile on Nolan's face when he saw Leah was priceless!  I'm sorry I didn't have my camera ready.   Nolan walked with Leah to the playroom and they did a craft there, then when we returned to our room, some new visitors had arrived.  Grandma GG, Mema and Grandpa were here.  We all visited in Nolan's room for a bit and then it was tie for our visitors to leave and get some rest. 

Grammy and Aunt Susan came back to visit around 4:15.  Scott and I were able to sneak down to the trailer while Susan and Grammy entertained Nolan.  We picked up the trailer, made dinner and just took a break from "hospital stuff" for a little over an hour.  When we returned, Nolan's dinner had been served so we all had dinner together, visiting a little longer and then Aunt Susan and Grammy went to the trailer to stay the night.  Nolan seemed comfortable and wasn't complaining of any pain, so Scott I discussed what meds to give Nolan that night with his nurse.  His last dose of pain meds had been at 8:30 that morning.  We decided to try just regular Tylenol.  Nolan fell asleep by 9:00 and slept until sometime after 6:00 am.  He didn't wake up, just wriggled a bit and talked in his sleep.  At one point this morning he said in his sleep, "I did it!"  I'd like to think he was talking about his heart surgery :)

Ok.  Time to shut down the computer & get packing.  Thank you all for your thoughts, prayers, and messages.  I'll post photos later once I get them up on the computer.

 

August 18, 2012

"Trust in the Lord, with all your heart, and lean not on your own understanding.  In all your ways, acknowledge Him, and He will make your paths straight."  Proverbs 3:5-8

Last night was a little better.  Scott and I took 2 hour shifts.  We both stayed in the room with Nolan.  He doesn't want to have us away from him.  So I would rest in the pull-out chair bed for 2 hours, while Scott sat up with Nolan and then we'd switch off.  Nolan also did better last night.  We tried to time his 2 pain meds, so they wouldn't wear off completely before the next dose of the next medicine was available to administer.  Our main goal last night was to keep Nolan as comfortable as possible.  Hard to do when you have a tube stuck in your neck, one in each hand, and 2 in your chest cavity.  Not to mention the sheer aches & pains from having your chest pulled open.  Lucky for Nolan, Scott and I can truly empathize and relate.

Once again-medically speaking he is doing excellent, Praise our Lord. This morning around 9:30, both chest tubes were removed! For those with any knowledge of surgery this is a HUGE deal. It's a giant leap toward home. I am personally amazed that we are on day 2 and they were both removed! The last surgery they waited 4 days. The plan is to also remove the central line in the neck later today. That will leave just the two IV ports in his hands.

 

Our goal today will be to get Nolan drinking more and starting on bland solid foods.  If he can keep those down, then we'll know he'll be able to tolerate oral pain meds.

We've not seen the surgeon today, but Nolan's cardiologist stopped by to check on Nolan.  All is well :)  Happy Saturday!

August 17, 2012

The above pictures were taken yesterday post-op.  On before extubation, one after extubation.

Short Version:  Hard night last night.  Medically speaking-Nolan is doing awesome-though he personally would disagree.  Off oxygen, Foley tube & the arterial line today.

Descriptive Version:

We had a challenging first night.  I think Scott and I maybe got a total of one hour sleep-and broken sleep at that.  Our plan of tag-teaming with one going to the trailer for awhile & the other staying with Nolan backfired when Nolan requested we BOTH stay.  And I'm sorry, we are both softies when it comes to him right now and there was no way we'd not let him have his way after the ordeal he went through.  So we BOTH stayed.  The staff didn't mind that we were there-they just were not set up to accommodate us in the room last night because typically the first night-the parents don't stay.  So we volleyed between sitting in plastic folding chairs to standing by Nolan's bed.

Nolan had a difficult night.  The pain meds would wear off and he'd wake up in pain. At which point he would usually say to us "I can't breathe" and he'd struggle with his tubes etc.  We would try to calm him down while his night nurse would give him some more pain meds.  He had one nurse assigned to him only all night long.  Nolan would basically follow this pattern every hour to hour and a half.  Then it would obviously take some time to calm him down and put him to sleep.  Not much different than an infant up all night needing food, only his food was pain meds.  On a positive note-at different times during the night when he would ask me for things he would say thank you, and please-which kind of impressed me.  (Though they were few and far between-but hey-grabbing for straws here).

In the morning, they removed his nasal canula (took him off oxygen).  They also removed his Foley catheter (the pee tube), and the arterial line in his left arm was just taken out.    Nolan has been cranky, sleepy and uncomfortable most of the day today-no wonder the hospital staff said no visitors.  We could be in for another long night.  He just asked me "When do we go to the trailer?"   When I told him not for a few days, he was very upset, attempted to take a swing at me and started crying.  Not much different than mom and dad-except we held our crankiness at bay and so far haven't taken swings at each other :)  Seriously-I'm amazed how well Scott and I are functioning today and with our patience level. 

I'll update again tomorrow.  I keep forgetting to grab the camera cord.  Rumor has it-one of the 2 chest tubes might be removed.  God Bless!

August 16, 2012

Sorry there haven't been any more updates.  The surgeon came to speak with us about 1:45 and as soon as he left-the nurses came to get us & we've been up in Nolan's room since 2pm.  (give or take a few pee & eat breaks)

Short version:  In for surgery at 8:30.  Done with surgery by 12:30.  In room at 1:00.  We saw Nolan at 2:00.  Extubated at 6:30pm.  Praise God!  Read no further if all you wanted was a quick update :)

For those who like more details-continue on :) 

It is 7:30pm, and I'm back at the trailer for a quick bite to eat & update the blog.  Doesn't seem real that a little over 12 hours ago we were making the trek across the parking lot to hand off our little man to the surgeon.

Just before 6:30 this morning-Nolan was STILL saying that he wasn't going to surgery-and even hid under the table in the trailer.  But it only took minor coaxing for him to come out & take the walk with us.

 Though I hope that no parent as to do this-if your child needs open-heart surgery, take them to Sutter Memorial!  The staff is awesome with children.  After the boring registration stuff (ok-they need a little help in this area-we've registered 3x in 2 days?) we were escorted by the Child Life Specialist-Monique-to the holding area for surgery.  They had a bed set up for Nolan with a handmade quilt (car-themed), a pillow with a star pillowcase, a bag of goodies (for him to keep) and some other "car" themed toys from the playroom on the bed for him to play with.  (I've added some pics of that area to the blog).  Nolan did fine with the nurse taking his stats but Monique was aware of Nolan's trepidation and so we just  played for some time and didn't get jammies on until after he had drank his sedative.  While were playing our neighbor (a 7 or 8 year old girl) was getting very upset as they were prepping for her IV.  Our nurse suggested, we take Nolan for a walk outside in the hallway so as to no create more anxiety for this poor kid.  About 5 minutes later we came back and played some more.  The staff was very sensitive to Nolan and they were excellent at handling him. 

Dr. Nasirov & the anesthesiologist came by and then at 8:05 Nolan was given the "happy juice".  He followed directions specifically and even verified what he was supposed to do with it before drinking it.  We were told he'd get giggly and goofy like he was drunk.  We had the video camera ready-but our son is just a "tired" drunk ;)  He just got mellow & sleepy.  He asked me once if he was here for his surgery and then said he wasn't going.  While watching a Scooby Doo video, we helped him into his PJ's and at 8:30 , they came to wheel him away.  We followed him to the operating room hallway and just before going in through the doors, he turned to me and asked, "Am I going for surgery?"  I just nodded and whispered yes.  He stared at me for a moment, and I'm sure if he hadn't been drugged I would have gotten the evil eye & his tongue stuck out at me.  As it was-he just turned back to his video (they kept it on his lap the whole time) and was wheeled away.  Not ten minutes later, Monique came to tell us he was asleep and there were no issues.

We came back to the trailer until the first phone call at 10:50 am.  The nurses that would be taking care of Nolan after surgery would be updating us frequently on his progress.  They called to tell us that Dr. Nasirov and team had opened the chest and were getting ready to start the bypass machine.  By this time my mom and aunt had arrived, so we visited a bit longer and had something to eat.  The next call came at 11:50 saying that Dr. Nasirov was finished with the repair and was getting ready to take Nolan off bypass.  So we headed up to the waiting room for the next call.  It came at 12:30pm saying that Nolan was done and that they (his nurses) we heading down to the OR to bring him up to his room.  Dr. Nasirov came into the waiting room about 1:45 and said all went great and we'd be able to see Nolan in the next 20-30 minutes.  5 minutes later, the nurse came to take us back to see Nolan!

Scott and I took turns hanging out in the room-Nolan had 3 nurses taking care of him and an ICU doctor.  For Scott and I both, it was kind of cool to watch the staff work -as we've been on the patient side completely out of it before :)   We'd take breaks back to the waiting room to eat etc. The doctor talked about extubating but nothing happened.  They were waiting for Nolan to wake up a little an open his eyes.  He finally did sometime around 5:45 pm or so, but when we asked him if he wanted the tube out, he shook his head and went back to sleep. When he woke up again about 15 minutes later-he tried to open his eyes and nod a few more times before the decision was made that it was time to extubate.  By this time, Leah had arrived and had seen Nolan.  She had gone back to the trailer to eat something and where she and Grammy came to say goodbye-it was time to extubate, so she was just outside the room with Grammy and got to see him soon after he was extubated.  She was able to see him open his eyes and be agitated too.  He was extubated at 6:30pm.

Ok...I'm done eating and it's time to head back up.  I only have photos downloaded  to my computer from pre-op stuff.  I'll try to add post-op ones tomorrow sometime.  This is going to be a long night and long day tomorrow...so the update may be late.

God Bless all of you.  Continue those prayers for a speedy recovery please.  Not sure what kind of patient Nolan is going to make yet  :)

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 :)