Another dose of normalcy

So Mr. Wesley turned one month old yesterday. My dose of normalcy, the child is in the 90th percentile for everything.

He is
11lb 12oz - 90th%
23inch - 90th%

I should not at all compare him to Quinn because who knows how big Quinn would have been, but this is a little more of the size I imagined a child born to Dan and I would be. Dan and I were both huge as infants. Just to give you an idea of how big Wesley is, I packed up his 0-3mth cloths on Wed. and he fits well into his 3-6mth close.

Quinn continues to do really well. He gets a little tired and emotional at the end of the day, but who can blame him. He is running all over the place and climbing on everything, which of course makes me so nervous. But other than being a bit emotional, he really is back to himself again. Cousin Makaila came to visit today and they were nonstop all over the place. Quinn absolutely loves seeing her. See was the person he asked for most when we were in the hospital. Unfortunately shes had a cough for a while so today was the first day they've been able to play.
This is the most use this elliptical has seen in months.

Well that was quick

5 nights in the hospital and we were on our way home. 4 days after the surgery, Quinn was walking around the hospital on his own. Talking, laughing, riding elevators.


The day we were discharged, Quinn thought maybe the other sick kids would want his balloons. He walked room to room and asked complete bed ridden strangers if they would like a balloon. Seeing his thoughtfulness put smiles on other kids faces was a neat thing to witness.

We have been home for about 4 days. Quinn walks with his shoulders hunched forward a bit, and we've asked that he not run or climb on things. Other than that, he's doing whatever the heck he wants and having a good time.

7 days after the surgery. He has to deal with a good bit of itchiness, but it sure could be worse.

Quinns recovery went faster than expected, in part, because he did everything the doctors and nurses asked of him, and took all their instructions as his personal part to getting home sooner. I suspect he will have some memories from this past week stay with him as he grows. I would like him to remember how he overcame a lot of fear and anxiety, because those are lessons you really can't teach.

Steph and I still talk about how fortunate it is to have so many people get behind us during our tough times. We thank everyone.

This was a tricky shot to get on my cellphone camera, Wes is a squirmy guy. But it's from today, the boys watching a movie. Life is grand.

Determinaton and support paying off

New day of improvement is in gear. The staff has let Quinn know he is improving to the point of going home soon. He is just about as upbeat as the day we brought him here.




Leads to his heart were pulled today, and with a little reassurance that there would be no needles or cuts, he stayed calm the whole time.

I'm able to relay messages of support and show Quinn the go quinn go pictures, and he is enjoying all the fortunes of support. As are Steph and I. It is hard to see other kids go through this without the support that Quinn has. And it's hard to see the new parents having a tough time dealing with their various experiences here, that clearly don't have the support that my family enjoys. Having such selfless and constant support from friends and family are invaluable when times get tough. And I thank each one of you.

I didn't take any pictures today

Lots of family visited today, and Quinn is looking good. The last two days have convinced me that this recovery in the hospital is going relatively speedy. I attribute much of that to the fact that he has been very compliant in his daily tasking. He has three things to focus on throughout the day: taking walks, eating, and blowing on his pinwheel for five minutes every hour. His pinwheel is to help his lungs recover to their normal capacity. It's a great way for him to see his own progress over a couple of days. The only persuasion tool I use on him is that doing these things will help him get out of the hospital quicker and let us all go home. He gives solid efforts every time I remind him of that. His tough times are when there's blood work to be done, replacing his bandages, and periodic stomach pain. Tonight he told me "Sometimes, kids bellies just kill them. I found that out on my own."

Kinda different, but his favorite bed buddy is a fuzzy giant snake.

He is woken up early each morning for x rays. This pic was from two days ago, when he was still feeling very down about his situation.

Wes is doing some growing here over the past week. Steph keeps him well fed.

Thank you everyone for supporting Quinn and my family. His mood has improved vastly over a two day period, and he is enjoying hearing the praises you guys have for him.

Walking it out

Big day for my family. Quinn has begun walking. All drainage tubes have been removed from his body, and he can eat and drink anything he wants. All this and he's only a few days removed from the surgery.

I was informed by the staff that seeing Quinn walk around for a bit will help determine how much fluid still needed to be drained through those 3 tubes sticking into his chest. And if all looked well, the tubes would be removed. That's the point that I began asking Quinn to be strong and show that he can walk. I had been encouraged to see a seven year old boy walk that day, who had a heart surgery the same day as Quinn. Quinn didn't like the idea of walking, but he did as I asked.

This picture is one of my new all time favorites. How can any father and husband see this and not be inspired. Steph is really one of a kind.


I felt bad as he walked, because my encouragement to him as he took these painful steps seemed to be in contrast to the nurses, who kept asking if he wanted to stop, or sleep more, or walk later. I kept telling him he was strong and could do it. I told him if he completed the walk to the toy box, he could pick out a toy.
He was never interested in any toys, and was done walking once he arrived at this toy box. His only interest was in doing as I said. Extremely proud of him and grateful that he complies.


Done walking.

I carried him back to his bed and he layed there looking pretty wiped.

Hope this video works. May want to turn the volume down. Quinn's displeasure is the only thing to be heard.

Everything I had hoped he could accomplish today, he did in a very impressive fashion. Love that kid!

Pain management

What a night! Quinns first time peeing without the cath stuck in him was a small victory. His bladder was full, but it took him a while to go as I sat there holding a little pee container for him. When he finally went he said in a weak voice "I'm going to tell my mom... I'm proud of myself." He is able to watch movies now and drink and eat.

When I asked him, he was able to manage a fleeting smile for the camera.

But much of the night was pain management. At times I sat on his bed and we held each other while he yelled. He wouldn't articulate anything about what hurts him, but it's probably a lot of things. He's asleep now and I'm pretty whipped. Just waiting for Steph to show up so I can tell her about how the night was.

Today is going to be a good one to get past. He will need to get up and walk around with all his drainage tubes still connected, so that any residual fluid will drain out by gravity. Those tubes are right through his rib cage and I know that has got to hurt. Good luck today little man.

Also, updating this blog during the day time may be kind of rare. This laptop is also Quinns movie screen. I update only when he and Steph and Wes are all asleep.

I had no idea that pulling a breathing tube was such an ordeal for a young kid. First two tries were unsuccessful as Quinn gagged and suffocated. Then he didn't want any one to touch the breathing tube. Then it became clogged so he suffocated more...

It's out now, and that part of recovery is behind him.

Three tubes draining fluid from his chest. He looks like a pin cushion. His only words right now are water, which he can't have for four hours. I tell him to relax as best he can and that he's doing a great job. And I'm thankful he's listening to me.



Right now Steph is off sleeping, and Quinn is asleep with a recent small dose of morphine. It has occurred to me that having a four year old go through this is more difficult than watching an infant. I remember him crying as an infant, and it was difficult to tell if he was in pain, or if he was crying because that's what infants do. At 4, you can read the misery on his face plain as day. Or he can tell you that he's hurting, or thirsty, or itchy, and there's nothing you can do but tell him to relax and wait.
I guess this is the tough part of the recovery because he's dealing with pretty fresh wounds. He has tubes punctured through his ribs on the left and right side of his chest to drain fluid from his lungs. He's not interested in TV or books, or anything for that matter. He just wants water. For the circumstances, I say he's handling everything very admirably. He's listening and doing what is asked of him. I think once he rests up enough, things will be a whole lot better.
Steph and I are keeping it together. Family has been coming to the hospital, and giving us breaks. A family member is by Quinns bed round the clock. Wes is eating and sleeping good, and Steph gets all the credit for that. Thanks for supporting my family. I will be showing Quinn his go Quinn go pictures when he is more with it.

The recovery has taken a turn for the better. Now that Quinns bleeding and swelling have become manageable, the next thing was to get his breathing under control so that his breathing tube could be removed. Since the surgery, he has woken up several times from his sedated sleep. As soon as he would wake, he would clinch his fists, stiffen his body and hold his breath, causing increased blood pressure and low oxygen levels. So he would bleed more, and his lips would turn blue while he writhed and try to cry. I haven't forgot how much I hate seeing that. Not one bit.
So about an hour ago, the staff informed us that the plan was to turn off his meds, so he would wake, and then try to bring him under control once he woke and, if he wouldn't breath, breath for him with a hand pump. Shortly after turning off his morphine, his eyes popped open and he began to shift around. Steph and I spoke to him and told him to relax and breath, relax and breath. Steph asked if he wanted her to turn on the TV in the room, and with a pissed off look on his face, he nodded.


So the next step, now that hes breathing on his own and responsive, is to remove his breathing tube in a few hours. Steph is reading him a book and trying to keep him as soothed as possible. He has been grabbing at all the tubes and wires on his chest, but remaining calm. He is a great listener, even with all that is going on.


Thank you all for supporting him. Steph and I are very relieved to see him awake and responsive.

Familiar times

Its been a while, a long while, but here we are. Quinn recovering from heart surgery, Steph sleeping, with Wes, and me with a laptop, pulling the nightshift at Quinns bedside. Right now he is sedated while we wait for swelling and bleeding to subside. Periodically, he wakes up and freaks out a little, and tries to cry with a breathing tube down his throat. This increases his blood pressure and he bleeds more. So for tonight, morphine and more morphine. When the bleeding and swelling come under control, he will be expected to wake up and panic about his predicament, while maintaining vital signs enough for the staff to remove him from the breathing machine. Waking up is going to be a pretty unpleasant experience for him.

Even though the setting is familiar, 4 yrs with this kid has changed everything. For one, he looks much bigger on these same hospital beds. But also, Steph and I don't look at him and wonder about what kind of kid he'll be or what good times will be like with him. The little boy he's become, I can't say enough about. More than I could have fathomed as a brand new father. Now we see a little man who we laugh with every day, and know how enriched he's made our day to day lives. A little man who is so much more aware of his surroundings, making his bravery all the more impressive. This whole process I must say, he has handled dutifully.

Steph is in another part of the hospital with little Wes, where she will try to get all the rest she can while keeping him fed. Wes is a good eater and sleeps a lot. A calm baby for the most part. Really helpful for Quinns hospital stay. But I give Steph a ton of credit for keeping her fear and anxiety about this surgery in check while nursing a newborn. I really really lucked out that she is a tough woman.

Quick Quinn up dates throughout the day...

Good morning everyone,

8:54am Steph has asked me to update the blog as things happen today. They made it up to Boston this morning and Quinn was brought into surgery. At about 10:30/11:00 they will have more information, which I will pass along to the blog (Jeff, Haley, and I will be in a doctor apt, so we will update as soon as we can).

10:24am "Prep is done (IV's, lines, tubes placed) and first incision has been made. Next update at 11:30"

11:21 They are done opening his chest, and he has been placed on the heart lung machine that will function to oxygenate and circulate his blood. They are starting to operate on his heart. Next update around 12:30 - 1:00.

1:00 Most of the repair is done, they are going to finish working on his heart and then check the repairs to make sure they are optimal.

2:00 Things are looking good. Quinn is off the heart lung machine. His heart is beating on its own. They are in the process of closing him up and the doctor will come to see us in about 45min.

2:36pm Quinn is done with his surgery and is headed to ICU for recovery. The doctor is very pleased and happy with how things went an expects all to be well.

5:28PM Quinn is resting in the ICU he has started to wake up a couple of times, but the nurses keep sedating him as they are not quite ready for him to wake up. They are working on regulating his volumes and blood pressure and just getting him stabilized so when he wakes up his heart rate won't go too high. They hope to have him off of the ventilator sometime tonight, which means they will let him wake up at that point.