Peeling back the layers of the biggest onion “depressing” my soul – Part 2

Warning:  This is part 2 of a series of 4-6 posts that are going to be long, emotional and potentially be laced with swear words, as I’m looking at a really tough time in my life.  It’s hard, but I feel I need to do it…Here is Part 2 …

We THOUGHT we had prepared for the worst, but had no idea how bad “the worst” could get…

So 2 weeks after we came home, we were preparing to go back into the hospital – December 17, 2002.  Charlotte was going to have her first surgery and we should be home in time for Christmas.  Like I said at the end of Part 1, Charlotte had other plans.

The day before her surgery was scheduled we went into the pre-admission clinic to find out our surgery time, talk with the anesthesiologist and get all our instructions.  We even spoke with the chief doctor in charge of the PICU.  He was concerned about her breathing so suggested we do a Bronchoscopy as well as the Diaphragmatic plication to check for signs of aspiration.  He was worried that she was also swallowing food into her lungs and maybe that was contributing to her very fast breathing.  They sent us for blood work, but the lab didn’t want to take it as her oxygen tank ran out and they didn’t want to have any issues.  They assured me they would take some before the surgery and it would be fine.  We went home to prepare for our early call and try and get a good nights sleep.

We got up early that morning and Gord, Charlotte and I drove into the hospital.  It was pitch black outside and I remember feeling so nervous.  I knew she was in excellent hands, but you should never have to be taking your child into the hospital for surgery.  She was in good sprits, smiling through her big bright smile, even with the tube taped to her cheek.  When we arrived, they put her in the little green hospital gown and we got to carry down to the OR when our names were called.  I remember talking to her surgeon, with his dark brown hair and sexy voice (even in crisis I’m not blind or dead), asking our last few questions and then handing her off.  He explained that she would be taken to PICU after her surgery because they were a little concerned about her breathing and just wanted to take that extra precaution.  After I handed her off (which is one of THE WORST FEELINGS in the world), Gord and I settled in for the long wait.

We had a tour of the PICU and settled in to wait.  When they brought her by and into the unit we weren’t even sure it was Charlotte.  There were so many tubes and machines.  Of course we had to wait until they got her settled to be able to go into the unit and the entire time it felt as thought my heart was in my throat.  When they let us into the unit I wasn’t truly prepared for what I saw, my sweet little girl surrounded by tubes and machines.  Hard to look at but I had to document everything and was encouraged to take pictures.  I strongly recommend this, as, while difficult to look back on, we shouldn’t forget the hard times but accept them and move on.  These pictures are forever seared into my memory, and it’s easier to let them go from your mind when you are able to actually hold them.  The surgeon told us that the surgery went well and that there were some signs that she was aspirating (swallowing into her lungs), and that they noticed a 4:1 shunt.  A what?!?  Basically, 4 times the amount of blood was going to her lungs.  Hmmmmm…  Anyway, they were a little concerned about her breathing but tried to remove her breathing tub – extubate her.  She seemed to do well, but the RT’s thought she was breathing fast.  I said that was normal for her.  They thought she was struggling so they tried c-pap.  It worked for a while but then alarms started to go off and people started coming in.  They told me to step back as they had to re-intubate her as her lung had collapsed.  Watching a bunch of medical professionals putting a tube down your baby’s throat, not something I recommend.  By this time I was by myself as Gord had to go home to be with Lindsay.  The doctors offered a parent room to me so I could stay close that night.

The next few weeks were a true roller coaster.  We tried to extubate her again, and it failed and the doctors were perplexed as to why.  Her chest x-rays showed “wet” lungs and they didn’t know the cause.  Again, most of the doctors around us were concerned about her heart and thought that this was some of the cause, but Cardiology still insisted that it had to be something else.  It did get to the point where I trusted the staff and didn’t feel the need to stay at the hospital; thankfully we were only a 20-minute drive away.  I started going to the hospital early in the morning and coming home for supper.  Sort of like a job.  Because she was so young, Charlotte had to be knocked out on drugs most of the time, with her hands secured, so she wouldn’t pull out the tubing.  The doctors suggested a lung biopsy to see what was going on with her lungs, and a Cardiac catheterization, to get a better picture of the ASD. 

Of course, by this time, we had to accept the fact that Charlotte wasn’t going to spend her first Christmas at home.  The lung biopsy was scheduled for Christmas Eve, and the Cath for early in the New Year.  I worked hard at getting Christmas ready when I had the time, and settling into a new normal.  The doctors were very helpful and always there to answer questions I had.  I started listening more and more to my gut instincts as I noticed I was right about things more often then not when it came to Charlotte and how she would react to things.  I stood my ground insisting that Charlotte still get breast milk at whatever mixture we could and became known as the breast milk Nazi.   God help you if you spilt any.  I worked hard for that milk and wanted every drop to get into Charlotte’s stomach.  Her feeding tube was changed to an NJ tube that goes past her stomach and into the small bowel, to help reduce the reflux.

The lung biopsy was successful and the doctor said her lung looked good.  It would take a while for the sample to be reviewed by a pathologist. Christmas was as good as it could have been with one child in hospital.  Lindsay was thrilled that Santa visited Charlotte in PICU (we have a polaroid as proof) and that he left her another special present at the end of Charlotte’s bed.  After Christmas we tried to extubate Charlotte again.  It seemed to work.  The only problem was she was showing signs of morphine withdrawal.  Shaking, foaming at the mouth – not pretty.  The doctors slowed down the morphine wean and we got ready to move to the floor, but on ICE – an intermediate care environment on a regular unit - 4 patients in one room with 2 nurses in the room all the time.  We were all excited because this was one step closer to going home.  It turned into a hair closer as charlotte only lasted on the ward for about 6 hours.  She was successfully taken upstairs and Grandma came with Lindsay to visit.  Grandma said she’d stay so I could take Lindsay home.  Because there would be a nurse in the room with Charlotte the entire time, I decided to stay home.  Then about 2 hours after I got home, I got a call from Grandma telling me they had to call a code blue on her and she was re-intubated and taken down to PICU.  A flood of tears and nausea came over me, as I had to tell Gord what had happened and rush back to the hospital.  He decided to stay with Lindsay, as we didn’t have anyone to watch her.  I spent the night at the hospital again as the doctors tried to figure out what had gone wrong.  She was working way to hard to breath, causing her lungs to collapse.  New Years Eve was not a celebration that year.  Charlotte was back in PICU and that night one of the young ladies we had gotten to know really well in our first 3 week stay, passed away.  It’s amazing how many tears you can shed.  You think you’ve cried them all out and your body finds a way to make more.

Charlotte had her Cardiac Cath on the 2^nd of January 2003, and it showed that the ASD was larger than originally thought when looking at the echo’s, but the pressures seemed within normal range, although on the high side.  The docs said that if she weren’t able to be successfully extubated, they would consider fixing her heart sooner.  They usually don’t have to operate on kids with ASD’s until they are around age 5, allowing them to grow and get bigger.  Well we were able to extubate her, with a slower morphine wean, and a whole lot of luck and were transferred, to the ward again, on Jan 5, 2003.

**Before I go any further into the story, I wanted to say that this was the time that I made some AMAZING friends during this journey.  Friends that I know I wouldn’t have been able to get through this without.  They have become my rocks and those that can understand 100% what it was like for me and my family to go and continue to go, on this adventure.  I have refrained from using names other than those in my immediate family out of respect, but I think you know who you are – KC, SW, SE – You will be my family FOREVER!**

It was nice to be up on the ward, seeing kids that were not as sick, able to hold Charlotte more and play with her.  She was more alert and started smiling again.  But the next month wasn’t a walk in the park.  She was originally on ICE, then moved to a regular room.  Our first day in a dual room and she coughed out her Central Line – blood everywhere!  Thankfully she was done her morphine wean and it was scheduled to come out that day.  I guess she really wanted that thing out of her neck.  But we weren’t in that room for long.  I had left to go pick Lindsay up and bring her to the hospital for a visit.  We walk into the unit and there is a whole bunch of people in the hallway outside Charlotte’s room.  My heart sank.  One of the nurses took Lindsay to the “space ship” so an RT could explain to me that Charlotte de-sated (oxygen levels dropped into the 60s, should be above 93) again, but she didn’t need to be re-intubated.  But they have moved her to ICE.  Talk about a roller coaster!  We were put into the bed by the window, which was nice, but I knew that this was one of the beds that our friend had been in.    Often times I would catch Charlotte looking up at the ceiling above her bed and get a very intent look in those eyes of hers and then smile.  Hmmmm…

One of my most vivid memories came one day when I was down in the cafeteria having lunch in the hospital cafeteria with some of my friends I had made while in hospital.  We were having a great time as all our little kidlets were stable and we were able to get a much-needed break.  Then the dreaded code bells went off.  It’s this sound that comes over the PA system that, to this day, gives me the chills.  We all froze, then the dreaded announcement.  “Pediatric Code Blue- 4C4, Pediatric Code Blue, 4C4”.  We all bolted, I ran up the stairs to the 2^nd floor and nearly had a code blue myself, then went to the elevator.  I joined my friends on the elevator and we were all looking at each other with panic.  It could have been any of the kids.  No talking, just a mother’s fear in each of our eyes.  A very powerful expression I can tell you.  When those doors opened, I was the first out the gate, running to the unit…Nurses saying “It’s not Charlotte, she’s fine.  It’s not Charlotte.”  All at once you’re hit with conflicting emotions, pure joy that it’s not your own child, and pure sadness, because you know the family & the child in crisis.  Thankfully, the child survived, but I will never forget that moment.  As I’m typing this the scenes are playing in my head like an old 8mm film reel, no sound, but I can feel every emotion.  Not as strong, but enough to make these posts so extra hard to write.

The problem was, Charlotte wasn’t getting any better.  She still wasn’t gaining much weight, and she seemed to be getting more and more dependent on the oxygen.  We even had to change it from the kind that just blows in your direction, to the nasal prongs.  Our pediatrician was at a loss, we even switched to more volume, less caloric, pure breast milk feeds because I had an instinct that she would do better with that.  We didn’t have enough time to truly test that theory because she went in for another major surgery.  Our pediatrician felt she was going into the early stages of congestive heart failure and that her heart needed to be fixed NOW.  She presented our case to the Cardiac Grand Rounds – all the cardiologists and cardiac surgeons from The Stollery and a few other centers in Western Canada who meet via video conferencing.  It was decided that they would fix her heart under the condition that they don’t think it’s the cause of her breathing difficulties, and it may be hard to wean her off the ventilator again.  Gord and I both felt we had to do something, and with the encouragement of our pediatrician, we said yes to the surgery.  Grand Rounds was the Tuesday, her surgery was  that Friday.

I slept in a lazy-boy chair the night before, in preparation for the next morning as she was first case.  Gord said he’d get there before she went into surgery. I remember the nurses bathing her and getting her ready, putting her in a clean little green nighty and walking beside her stretcher down to the OR.  Both Gord and I gowning up to go into the waiting bay with her, then the nurse coming out to wheel her away.  The surgery took a little longer than we were told but we weren’t too panicked.  When the surgeon came to tell us about how it went, while she was getting all set up in PICU, he said the hole was a lot bigger than even the Cath showed, about the size of a loonie – enormous considering your heart is the size of your fist.  She was an 8lb baby!  He also said he managed to repair it by sewing it together, not graft or plastic disc was required.

This time we weren’t as shocked when we went in to see her as we had seen it before.  She had one of the nurses we had gotten to know during her previous PICU stay and knew she was in good hands.  The PICU docs said they were going to be a little cautious in extubating her as her lungs still looked wet and with her prior history they wanted to be sure.  We agreed.  She looked healthier than the last time she had had surgery and I felt a calm like, things will get better now. 

We also knew the night nurse that was taking care of Charlotte and she was very stable, so the nurses encouraged us to go home and get a good nights rest, maybe even go on a date.  We did, we went to see “The Lord of the Rings – Two Towers”  As the previews started, Gord leaned over to me and said “Charlotte just had open heart surgery this morning.  Should we really be here?”  and I replied “If it was her first surgery, then yes it would be weird, but we know she’s in the best place, in the best hands and we have our phones.  We’ll call as soon as the movie is done.”  We really enjoyed the movie and had a great night, all things considered.  It was a good thing too as all hell was going to break lose, and we had no idea what was coming.

Stay tuned for “Peeling back the layers of the biggest onion “depressing” my soul - Part 3”