Jorden's Latest Surgery
Continued....

We were taken upstairs to a room on the ward. All of the ward rooms are private (well, except for a couple) and include a phone with a private line, your own bathroom with tub and shower, your own tv with 4 channels (full channels for $8 a day) and a cot for one parent to sleep in the room. There was a kitchen on the ward where you can get toast, ice cream, pudding, jello, juice, that type of thing at anytime.

Jorden was introduced to his nurse, a male nurse named Chris, who was really cool in Jorden's books, who even had an earing in his eyebrow and was a skateboarder. Right up Jorden's alley! Jorden really liked him, and seemed to respond really well to a male nurse. They took his vitals, hooked him up to his oxygen, etc. and then Jorden went to sleep. A little while later his doctors came up to check on him. They told us then that Jorden's lungs were collapsed in the bottom half and he a physiotherapist would be up today to work with him on his breathing to try to get his lungs working better to fix it. They had to get him working hard to breath well and fix it, or he would be at risk of getting pneumonia and having to have a chest tube inserted again. Yikes.

Jorden was happy to be in his own room, and right away he asked for video games! I took a photo of him giving the thumbs up while the nurse went in search of the games.

Here Jorden enjoys the video games:

Later on Jorden's physiotherapist came and showed him his breathing exercises, and how to cough using his heart pillow so it didnt hurt his chest so much.

After this he was pooped out, and had a nap. Kelsey was staying at a friends house for the night, and would be picked up tomorrow. Dad would be coming out tomorrow to visit also.

That night Jorden was still quite restless, and they had to come in each hour to check his vitals, oxygen saturation, and every three hours to give him his meds, so we didn't get a lot of sleep. The next day his nurse wanted to get him sitting up a bit, but when we got him sitting up and out of bed, he almost passed out and his oxygen went dangerously low. They called in a doctor to see him, and later the cardologist came to check him out. They decided it was just that his lungs were still collapsed and he needed to up his oxygen and really work on his breathing. At this point we were just really worried about his lungs and having to have a chest tube inserted. After every thing he had been through already, we really didn't want this to happen. So we worked hard with him every hour to do his breathing exercises.

That afternoon his nurse got him sitting up

and walking to a chair in his room. Jorden said he felt like an old man..ha. Jorden had this little glowing red light attached to his finger that measured his oxygen saturation in his blood, and when he walked he kind of lurched slowly from side to side. His nurse says, "Jorden, have you seen the movie ET?" Jorden tells him yes. Chris then tells him to say, "Eee-lll-iii-ooo-ttt" like ET while he's walking. It was pretty funny. Jorden made it to a chair, where he sat to eat his lunch.

Here's Jorden and Chris:

Jorden was pretty happy with his hospital meals, the food was actually pretty good:

That day Jorden had a few visitors, three of his friends and their families came to visit and brought him some balloons and other various wonderful gifts. I think some of them were a little tentative about seeing Jorden looking so fragile, with some of the tubes he was attached to and such. But they warmed up to it quickly. Jorden was very happy to have visitors.

That night Jorden started refusing pain meds, as he just didn't like the taste. It became quite the struggle for the nurses and I to try to coerse him into taking them, yet we knew that if he didn't he would be in world of hurt by the morning. He ended up skipping two doses in the night, and by 6am he was in a lot of pain.

He had a new nurse today, Ramona, and while Jorden was upset to find Chris was not coming back, Ramona was also very nice.

Today we got Jorden up and walking. We got a portable oxygen tank, and Uncle Rob helped wheel it along while I took some photos:

He made it a little ways before tiring out and needing a push in the wheel chair from dad:

We went for a walk around a bit, and took a photo of the food cart, that looks like a school bus:

Jorden then decided to rest up as he really wanted to take part in Bingo that would be taking place at 2pm in the playroom. Dad, Kelsey and Uncle Rob left and Jorden and I played some games and read some stories until some more of his friends arrived for a visit. At 10 to 2, I asked his nurse if he could get an oxygen tank to go to Bingo, and she said he couldn't go without a nurse, but if she would see if he could go without the oxygen. So she came and we sat him up in bed and took off his oxygen and took a look at his O2 Sat, and he was good to go! Then suddenly some new visitors showed up, uh-oh! Jorden looked at me with pleading eyes, and politely tells his new visitors that he was going to go to bingo, and did they think they would like to go play bingo too? He soo wanted to go, but I know he also didn't want to be rude to people he knew were coming to visit him! So we all headed out there, visitors and all and played some bingo. Here's Jorden around a table of his own with all his visitors

Jorden ended up winning the very first round! I was soo happy for him, and he won a authentic SIGNED hockey card of Vancouver Canuck Daniel Sedin! Wow! Was he impressed!

They played two rounds, then Jorden was very tired. The lady announced another round, but to my surprise, Jorden said he wanted to go back to his room and have a rest, he said he was too tired and needed to lie down. So his visitors also came with us to say goodbye. After that Jorden had a three hour nap, and he had to be woken up for dinner!

After dinner I took some more photos of Jorden looking so cute in his bed, with his slippers that the ladies hospital auxillary knitted and gave to him. He didn't like them, and called them "sissy slippers" which made us laugh.

We played more board games that evening, and then we watched Star Wars, and went to bed. That night they agreed not to make him take any pain meds and just let him sleep through the night instead.

In the morning Jorden had to start taking his baby aspirin. He started to put up a fuss until he understood he would have to take these every day for the rest of his life, so he'd have to get used to it.

That morning his surgeon and cardiolist came to visit to tell us that after his echo and ECG he could go home today! Just 5 short days after his surgery, wow. Within a few hours we were taken downstairs for his echo, unfortunately Eustice wasn't there to do it, I was hoping to get a photo of him.

After the echo, he had a quick ECG done:

and then we went back upstairs and were evicted! They gave us all our info we needed to know about bacterial endocarditis, PPS, etc. and released us. We have a return appointment with our cardiologist on May 5th, and will have a series of checkups after that as well. It will be interesting to see over the next few months Jorden's exercise capabilities improving. But for the next 6 weeks he is not able to ride a bike, skateboard, play soccer, run, basically all he is allowed to do is walk! It's going to be hard for him to do, being a typical active 9 year old boy. And hard for him at recess and lunch at school when all his friends are playing, but I'm sure we'll figure it out.

Yay, it's over! (for now....)

I have to add, that although the immediate worry is over, my worry for Jorden is never going to be over. The threat of re-operation of JOrden's heart is 20 to 30%. I'll always worry, whenever he looks too tired, whenever he looks a little huffy, has a pain in his chest...I'll always wonder. I can set it back a little further in my mind now, but it will always be there. I long to be able to just have a healthy child and not have to live with that worry, but at the same time it does make us cherish every moment we have together and reminds us that our lives together as a family are more precious than anything else, however corny that may sound. And that is probably why we DO spend so much time together as a family, which is fun and great also.

UPDATE (July, 2005):

It was hard for Jorden to go so long without activities, and at his three week checkup he brought his wheels for his heelies, hoping Dr. Hosking would tell him some good news. Unfortunately, he was told to wait another week and a half, and he cried silently. I felt so bad for him! So he waited, and finally on a Friday he got his activities back. BUT....two days later on Sunday he broke his arm! Poor guy! So he lost all activities for ANOTHER 4 weeks.

He is now doing great, but has gained some extra weight thanks to the 8 weeks of inactivity. That's no problem, I'm sure it will come off eventually with all his new activity.

Jorden takes 2 baby aspirin a day, which now seems to be causing him to bruise very easily, as well as bleed very easily! Any little cut and he gushes blood, so this is something I'll ask his cardiologist about at his next visit.

He is feeling great, more energy, and was very happy to be able to pull himself up on the wakeboard. Way to go Jorden!