Saturday, March 30, 2013

Cameron's surgery: Day 7

Actually today was fairly boring as for things to report.  Isn't that fantastic news????!!!!  Cameron is thriving at his new location and he got to have his first bottle today!!!  You should have seen his eyes when I put it in his mouth and he realized what it was!  Oh my heavens ... it was like that child had died and gone to heaven.  Normally a slow eater, that child finished his bottle in about 7 minutes.  He is just doing so well!  I don't know when we will go home, there are definitely still some things that need to happen, but he is stable and we are all happy.

The hospital had some easter activities for the boys today and they had a BLAST participating in those.  I'm pretty sure they ate chocolate for 2 hours straight.  It makes me a little scared that they are going to have a second day full of chocolate and spoiling.  Poor mom is going to die when she takes them back to Calgary and has to straighten them out again and put them on a schedule!

Anyway, I know it isn't much but I'm counting that as a good thing.

this is where I found Evan this morning.  He thought that he was so darn clever rolling off of his floor mattress and under the bed. He made my heart jump, thats for sure!

Im allowed to sit up now!

Cameron surgery: Day 6

Today was a HUGE day for our little baby!!!

I finally got to hold my baby boy again.  I have to say that he was pretty darn fussy until they put him in my arms and then he snuggled into his rightful place.  Cuddling my baby has probably been one of my strongest memories, good and bad, of this whole experience.  Not being allowed to hold him, or even really touch him, was something that was really hard for me.  My arms felt empty and I ached to be his comfort and support again.  When the surgeon came around and said, "Lets get that baby into Mom's arms."  I thought I would die with joy.  It was pretty interesting getting him in and out of my arms though.  At the point that they let me hold him he was still connected to a billion tubes and wires, so it literally took 2 nurses to place him in my arms.  His voice was still SUPER hoarse from the ventilator tube down his throat and it just made his little voice all the more adorable.

Justin, my Mom, and the boys all arrived today and it was the SWEETEST thing to see the boys come and interact with Cameron for the first time.  They each came in individually and were soooo sweet.  They each had a lot of questions about what was what and how he was feeling.  They kept kissing his feet and touching his leg.  I asked Evan if he missed Cameron and he made my day when he said "yes, but I missed you more!"  Well melt my heart and mop me off the floor.  Each of them were very happy to spend "their" time with "their baby" and really love being here as a whole family.  Honestly that has been one of the hardest things about this time.  We miss not being with each other.  The boys are acting up a bit while my mom is watching them and I know its because we aren't together, Cameron is also gone, and I am pretty sure they are feeling everyones worry about what was happening.  Thank heavens we get this Easter weekend.

Cameron had the majority of his tubes and major lines taken out today.  Watching those lines come out was pretty darn interesting.  Probably not something the faint of heart (or stomach) should watch, but I found it fascinating!  I'm really enjoying giving Justin the details and watching him squirm.

The BIGGEST news to report is that Cameron was healthy enough to be transferred into the ward.  It is really exciting to be able to see him lying in the bed by a window that looks outside and him not be attached to a mass of machinery.

Cameron is VERY awake now and is constantly punching himself in the face with his hand, which has a plastic barrier taped to it so he cant rip out his IV.  It is adorable to be able to see him start to get his personality back.  Now I am just looking forward to his first post op smiles.

We are so proud of our little man.

Our monitor graveyard

Daddy holds him for the first time.  Look at the look he is giving his Daddy.

We were eating lunch in the garden area and Evan says "Mom I need a plate"  Me: "Why?" Evan: "I need it to collect money for my new wheelchair while I play the piano."
I died!!!  How cute is that?  So we gave him money and so did one other woman when we explained to her what he was doing.

3 days post op and his incision looks fantastic.

Our new home

Friday, March 29, 2013

Cameron's heart surgery: Day 5

I can't believe that we are already 5 days into this adventure of ours.  I am happy to report that today was pretty uneventful, and yet so much happened!

Today they removed Cameron's LA line and his Catheter.  They also were able to wean him off of epinephrine.  The Cardiac rhythmic specialist wanted to try and determine a more definite reason for his rhythmic problems on his first night of recovery, so they ran what they call a wire test.  This test is a bit unnerving for a mother to watch or be a part of.  The Cardiac team gives him a dose of a very strong medication that stops his heart so they are able to control different portions of the heart with the pace maker and determine what happened.  Unfortunately after doing the test 5 times and raising the dose the test was inconclusive and so they are probably going to try it again tomorrow.

Cameron started opening his eyes today.  He looks like he is hopped up on drugs ... which I guess he is!!!  It is a good thing that he is starting to be more alert though and hysterical when he give the stink eye to the nurses who are messing with his dressing, tubes, or doing anything that he doesn't like.

I think one of the saddest things to see for me right now is that because he is still intubated he can't make any noise when cries.  You see his poor face crinkled, his eyes water, but can't hear anything because of the tubes going down his throat.  :-(

The team started to try and prepare him to be extubated (take him off of the ventilator) today, but it didn't happen.  They may be extubating him in the middle of the night or it might be in the morning when I'm there again. I stayed long enough to hear the plans for his extubation and came back to the Ronald McDonald house to eat a free dessert and lay my VERY tired body down for a little bit of rest.  It is surprising to me that sitting in one place all day can be so tiring, but as one of my friends said on Facebook ... "worry is very tiresome!"  I think that combined with the constant anticipation of things throughout the day is what does me in each day.  In any case I am extremely tired at the end of the day.  I may or may not get a phone call in the middle of the night and since my eyes are swollen and ready to shut permanently while I am typing this I am going to go to sleep.

I'm so glad Cameron is doing so well.  All of his doctors are very very happy with his progress.  

I don't know what I would do without the Ronald McDonald house.  It is my safe haven every morning and every evening.

one of the nurses found me a comfy chair and we wheeled it over to my baby's bedside.  I guess they got the hint that I wasn't leaving his side anytime soon.

can you find the baby?

hello world!

Thursday, March 28, 2013

Cameron's surgery: Day 4

Last night was a rough night.

Cameron's developed JET ,which essentially means that his heart rate was really really high.  His rhythm was very sporadic and he began developing a pretty high temperature.  Cameron's team tried to stabilize him with a temporary pace maker, sedation, cold therapy, and a combination of medication.  Cameron kept throwing them curve balls.  He wouldn't stay sedated, which would in turn spike everything they were trying to keep steady.  Finally they decided to try a different sedation medication and this one his body tolerated better.  In the morning they cleared his heart for any significant leakage.

By about 10:30 in the morning the team had stabilized Cameron and the rest of the day was pretty much smooth sailing, minus a couple of very minor bumps.  Though the doctors prepare for these things to happen and these complications can happen very easily in patients recovering from open heart surgery it is unnerving to constantly have 9-13 people all working on your baby at the same time.  Like I said in a Facebook update earlier today, you know your baby has truly been stabilized when you can take a picture of his entire space and NOT have other people standing in the frame.

Originally the team was hoping to extubate Cameron today, but because of all the cardiovascular issues Cameron had through the night and this morning they made the decision to leave his LA tube in and to leave him intubated.  Hopefully they will be able to take those things out tomorrow.

After Cameron stabilized he was very calm the rest of the day.  Justin and I (and all the other parents) were booted from the PICU while they performed an operation on an emergency case that came in from Calgary yesterday.  The child wasn't stable enough to be moved and so they did the operation there.  It got me thinking that I am glad I am in the situation that I am in because I have had 6 months to prepare my brain for this life altering event.  It isn't an easy thing to go through.  There are moments of worry and stress, but we planned on it happening!!!!  This poor family was living their life and a moment later their child is in critical condition and their entire family is experiencing that stress in a different city with no preparation.  I am so fortunate.

Right before I left the hospital for the day they were going to start put a very minimal amount of food in his NJ tube to start prepping his gut, so hopefully he can start receiving full feeds soon.

Everyone is very happy with Cameron's progress today.  How lucky are we to live in a day and age where Cameron's heart can not only be repaired, but that he can be monitored so closely and made so comfortable as his body heals.  We feel everyones prayers and we a literally feeling God's love for our family.  God is Good.    

Sadly Justin went back to Calgary today so little Cameron and I will be hanging out by ourselves tomorrow.  We already miss Daddy dearly!!

when we got kicked out I took a nap on some really comfortable chairs ... NOT!!!  But I actually DID fall asleep and this I know because I startled awake when I started drooling.  I was pretty tired!

Wednesday, March 27, 2013

Cameron's heart surgery: day3

Today was the culmination of our last 6 months.  It is literally the day that we have been waiting for.  It is also one of the most stressful days of my entire life.  We arrived at the hospital at 10AM to be admitted and then we waited again.  There really is a lot of waiting when you are having a scheduled surgery.  We received word that we would definitely be going for surgery which was simultaneously relieving and gave us more to worry about.  Again Cameron is a trooper and hardly complained about his second day of not eating.  By the time the stretcher came to get our sweet little man he was really hungry, so Justin jumped on the gurney and made him laugh most of the way to the surgery area.  Already emotional, my nerves grew with every step closer to where we handed our angel to the anesthesiologist.  I was expecting to be able to take him into the operating room like I've been able to do for the other two boys and felt very jolted when the anesthetist very abruptly told me she wouldn't allow it and took my baby and left.  It was then that I burst into tears and immediately used an entire box of tissue.

Then we waited 4 hours.

It was an interesting 4 hours.  Justin did a good job distracting me and while it went slowly I didn't spend the entire time crying and instead only cried periodically.

Finally we planted ourselves in the waiting room and eagerly waited for any news from Dr. Ross.  He finally came and gave us the information we needed.  Cameron's repair was beautiful.  He is very happy with how his heart is working.  In his words "Cameron has a weird valve, but it works really well."

About 20 minutes after we spoke to Dr. Ross we saw our baby roll by and got to say hello for literally 5 seconds.

Then we waited for 45 minutes.

Finally we called into the PICU and asked if we were allowed in to see Cameron yet and they said yes.  The team of 10 people were still stabilizing him but they were alright with us staying to observe and ask questions.  Everyone was wonderful.  There was lots going on and Cameron requires VERY close monitoring for the first 24 hours.  I am trying to get the rest that our nurses told me to get, but it is very hard to do that.  I miss my baby and I'm worried about him.

As I'm writing this the PICU just called and told us that Cameron is having some complications.  They are cooling his body, going to use the temporary pace maker, and sedating him again.  Now I can't sleep.  They said I don't need to come in yet, and hopefully I'll get better news when I call them back for an update.

Sorry for the unnerving end to this blog.  Hopefully we will have better news to report in the morning.  

Tuesday, March 26, 2013

Cameron's heart surgery: Day 2

Today was our pre-op day at the hospital.  What a day!  It was so physically draining.

We woke up at 5:30AM to get everything and everyone ready and took off to the hospital for the beginning of our 7:00AM appointment.  We met with the nurses, our surgeon (Dr. Ross), the lab technicians to get blood draws, and the physiotherapist.  Cameron got an echo cardiogram, and an EKG.  We all got a tour of the PICU, signed a waver for him to be a part of a research study, and ended the day with a chest x-ray.

Cameron is a rock star!!!  Seriously this little man fasted for 13 hours before he was aloud to eat, and he was so calm all day.  He didn't fuss once through any of his testing and he was calm enough that they didn't even need to sedate him for his ECHO or EKG.  I was such a proud Mama!

Cameron was cleared for surgery tomorrow and we found out that he has a secondary hole in his heart. This hole is quite small and would have closed on its own, but since they will be in tomorrow to patch things they will just close that too.  His surgery will be at 12:10 tomorrow.  Dr. Ross says that an AVSD repair is his favorite surgery to perform.  Its not the most complicated surgery they do, but its not the easiest either.

Overall I have been feeling less anxious today than other days this week.  Don't get me wrong I am still anxious but now I am in work mode.  I have a strong feeling that tomorrow is going to be a totally different story.  I wish I could say that surgery was an absolute guarantee, but there is a still a small chance that it could be cancelled for other emergencies.  Please pray that surgery happens as planned.

Tomorrow is the day that we have been anxiously waiting for and dreading for the last 6 months.

Wish us luck!!!!

The X-Ray is the only thing he cried for.  This is the 4th one he has had in his life and I cry right along with him.  You'd think there would be a better way to get the picture of his chest.  

talking to GG who is wishing him luck tomorrow.

This child fills my days with joy!!!
To quote my dear friend Dorienne ... "Literally bless his heart!" 

Monday, March 25, 2013

Cameron's heart surgery: Day1

This post isn't going  to be a long one.  We kissed our older babies goodbye (and I bawled like a baby), hugged my mom and took off to Edmonton.  I am happy to report that we have safely arrived (no 100 car pile up for us) and might I say that I am already so grateful for the Ronald McDonald House.  It is amazing here and they truly know how to make a difficult and highly emotional time more bearable!  They have thought of everything!  As soon as our tour was completed we sat down and they fed us dinner. 

We made our initial drive to the hospital today so that we know we are going tomorrow morning at 6:30AM.  Our 5-6 hour pre-op day is tomorrow morning and (all fingers crossed) we will be told a time to arrive for surgery on Tuesday.  Wish us luck!!!

Before I sign off I want to say how completely overwhelmed with gratitude I feel right now.  There were so many people fasting and praying for us today.  I felt buoyed up and I feel loved.  Thank you all for the strength you have given our family.  We needed it! 

And now I have to feed a baby and go to sleep.  More tomorrow! 

Wednesday, March 20, 2013

Camerons surgery update

Are you surprised that I'm on here again?  Here is the thing.  I am tired.  Everyday I think I'm going to write a blog, because I really do love it, but then the evening comes and I sit on the couch, our laptop is dead and I don't want to get up and go down to the office to write a blog so it just doesn't happen.  (Three boys people!!!) The truth of it though is that starting this week the updates are going to be quite regular, and this is a guarantee!

Cameron is having his open heart surgery in less than a week!!!!  I can't believe that I can finally say that now.  I want to remember what every moment feels like and I want to be able to share it with others.  I want our loved ones to have a place where they can get detailed updates on what is happening, and this is the perfect way to do it.  I will also be alone in Edmonton for most of the time so I will be able to update a lot more frequently.

So where we stand now is ...

Cameron is scheduled to have surgery on Tuesday March 26.  Our fun will officially begin on Saturday March 23.  We are taking a gamble and flying my mom up this Saturday to be with the older boys while we are in Edmonton with Cameron.  Sunday afternoon Justin and I will drive our sweet little one to Edmonton and we will have a full pre-op day (5-6 hours) on Monday.  AND THEN......

If all goes well Cameron will have his surgery some time on the 26.  There is still a chance that it could be cancelled and we are praying that wont happen.

This is the first week since Cameron joined our family that I can say I am feeling very anxious about what is going to happen.  I cry very easily and I truly believe it is because my emotions are ranging from relief, joy, excitement, and pure terror.  I am trying desperately to get everything in order so I have less worry about the house, the older boys, and everything else in my life while I am busy worrying about Cameron's surgery and recovery.  I know he needs this surgery to survive and I am so happy that it is finally happening and my baby is going to have the chance to be healthy, but it is a HUGE surgery and I worry for his safety.

In any case come here for updates, and please pray for our family.

I found a YouTube video of an actual AVSD repair, which is what our sweet boy will have done next week.  It is not scary to watch, but fairly informative.  And don't forget to click on the link I have on my blog that will take you to my Instagram where you can see some of our daily activities.