The Glen & The Horror

Shane had his Glen Open Heart surgery on May 1'st. After 3 hours in the OR we finally had word from the surgeon. He pulled through, and the operation was a success! It was a good operation other than his pulminary artery Y's out closer to the heart than it should, so we will need to watch lung pressures. If his lung pressures get too high we will need YET another open heart surgery, however the medical staff don't feel this will be an issue.  His oxygen levels were low when he got to recovery, but quickly bounced back up to his normal. Everything was going good, a successful major open heart surgery, levels returning to normal & a comfortably sedated little guy (so he couldn't yank out his tubes). We were told the next 24 hours would be absolutely critical to his recovery. Shane had a good night, BP & Heart rate were good, so they extubated him. He cried so loud the entire ward heard him - good news to us, his vocal chords are still strong! With that, we got ready for the day & headed over to the Stollery.

Things quickly took a turn for the worst this afternoon. Shane has gone into severe respiratory arrest, He became even puffier (swollen) than usual & his heart rate as well as blood pressure were VERY high. Medical staff acted immediately, our son has been put on a C-pap to make breathing easier & dialysis was started right away to hopefully remove the puffiness, if the dialysis doesn't work he will need to be reintubated to drain the fluids.

Within a few hours we started seeing improvements. The C-pap has been working amazing for him, his numbers were getting lower. Heart rate around 174 & Blood Pressure in the 120's. He does have a collapsed lung as well now, but hopefully the Cpap will sort things out and start to improve his breathing for him. We pray the dialysis starts to work & take some of the fluid off.

It will be a finicky night trying to get everything sorted out. Although there have been complications, we feel peace in our decision. A few short weeks ago our son was supposed to die, we were told to start preparing or at least thinking of his funeral arrangements, and now here we are talking about the success of the Glen! Shane has once again shown everyone his life is in gods hands. What a strong, brave, beautiful little boy we have been blessed with!

The Waiting Game + Rambling

We've been preparing ourselves for the Glenn for over a month, we were told last week the operation would for sure be THIS week. It is now Wednesday & we are still waiting for the team to tell us the day. It usually happens that we get bumped for trauma operations, and I wouldn't be surprised if this is the case this week as well. We keep praying for timing, the timing of the operation needs to be perfect.. the day, hour & minute of the operation. Even though we feel frustrated we can only hope this means we are still waiting for the perfect time of surgery.

Shane's had some ups & downs this past week, which is likely also a reason we are still on the edge about a day. His heart rate was quite high - in the 130's, he's usually in the 120's.. thankfully all that needed to be done was a correction of a medication dose. He's smiley, happy and just amazing. We've been out on day pass quite a bit getting to know more families at RMH. It's nice.

Today we are also remembering our baby who went to heaven 2 years ago. We had a miscarriage at 11 weeks, a lot of the time I feel this baby is watching over Shane & giving him the strength he needs to carry on & fight this battle. We wish we could hold you now, Mommy & Daddy love you and will one day see you. <3

Since having Shane, I have been up here at the hospital & RMH non-stop. I've only been home about 4 times since his birth. Matt stays back home a fair amount, for work & Nora stays with friends & family 90% of the time. I've had her up here with me this past week, and I am desperate to have my family together in one place.. more so one city. Matt is able to apply for a transfer within his company up to E-town where our little man is. This would be SUCH a blessing, to be able to re-locate our family here. We could be here for years yet, and set-up we have now is too stressful on everyone. It's not fair to Nora that's for sure & is putting a LOT more stress on myself & Matts marriage. He has applied for the transfer, and now we wait. . .

Our Journey

December 1'st 2011, I gave birth to our beautiful son - Shane Michael. We knew early on in the pregnancy that he would immediately need a pacemaker put in after birth as the disease I have (lupus) didn't allow the bottom two chambers of his heart to develop. This was caused by a specific anti-body I carry, called anti-ro. 5 short hours after Shane's birth his operation was done - perfect! The surgeon said it couldn't have gone better and he didn't skip a beat.

December 2'nd our little mans heart rate started jumping all over the charts, it was dropping down to low 30's and spiking to high 150's & his blood pressure was elevated. A definite cause for concern. The doctors acted quickly with medications & machines, unfortunately not quick enough. Shane suffered from a stroke in the part of the brainn (right cerebral hemishphere) controlling things such as hearing,seeing,smiling,talking,feeling etc. A full day into his life he was suffering from strokes leading to brain damage & had a pacemaker operation. We will not know the extent of the damage from the stroke until Shane gets older, we are seeing improvements every day now as we fight with him.

December 5'th 2011 - after extensive testing & panick to find out what was causing such an irregular heart rate and strange BP the doctors had a final diagnosis for us. It wasn't just an infection and certainly wasn't a result of the surgery. Shane has Hypoplastic Left Heart Syndrome, more commonly known as HLHS. In HLHS the left side of the heart, including the Aorta, Left Ventrical, and the Mitral Valve are all underdevloped. This was NOT found in utero.

Over the next two years Shane will face 3 reconstructive surgeries, to hopefully solve these issues. One as soon as possible, one between 4 & 6 months & a final at 2 years. The first was the Norwood Sano Procedure. December 9'th Shane underwent the first major heart surgery - The Norwood Sano Procedure the operation itself was done within a few hours. The surgeon & ped cardiologist quickly explained the operation itself had gone well, but Shanes recovery wasn't off to a good start. He was still on the heart & lung bypass, they'd make an attempt to take him off & it failed. He wasn't breathing on his own, his heart wasn't beating on it's own & he had very poor kidney function. Our son was put on ECMO - a form of life support.

The ECMO ran a full circuit of  tubes through his chest, as well as numerous IV's, oxygen etc. He was taken off life support on December 14'th. The few day gap determined he would need dialysis for his kidneys & we were also dealing with a collapsed lung.

The past months have been filled with infections, blood transfusions, dialysis & constant scares. At one point we had to make a decision - we were either going to keep on fighting along side Shane or take him home & let him pass away. We couldn't see our child giving up this fight, so we continued down the fighting road. He's continued to gain weight, grow & learn new things daily. This past week our son got a heart cath put in, this means we WILL be proceding forward with his next BIG open heart surgery, the Glen Procedure. We don't have a date for this yet, the doctors will inform us when they have a meeting with the whole team.

Although our son has spent his entire life in a hospital, we couldn't be more thankful & blessed for his little life. He's a fighter, a miracle & a true inspiration to all of us. He's learned to smile, coo, move around, roll onto his tummy, and we're working on sitting up. His smile lights up my whole world and makes each day worth it. We are able to leave on day passes a lot of the time - Shane has been to OUR home twice, as it is a few hours away. We spend our day passes at Ronald McDonald House and it's simply amazing. Together, as a family we are getting through this. My husband & I have grown closer & I can't imagine going through this with anyone else, I'm thankful every day for being with him. I couldn't do this without him. Our 2 year old, Nora loves her little brother & says prayers constantly for his health & recovery.

Here we go on a long, crazy, emotional journey!

Our Easter Family Photo!

And some older photos: