9.09.2014

Labor day weekend: Max's heart surgery

It's amazing how you look at your children differently when you know they will be undergoing surgery. Although I felt pretty sure things would be just fine, there's still those moments when you question- "what-if".  This was the day before going up to St. Louis.  They are also the last pictures of Max without scars on his chest.
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We went up to the hospital (Cardinal Glennon Children's hospital in St. Louis, MO.) Thursday afternoon (the day before surgery) to meet the doctor and get some preparatory tests and paperwork done.

This was a little play station there at the hospital that we made a stop at prior to checking into our hotel. In hindsight, having been tethered to a hospital with 2 young kids for almost a week, we might not have stopped to play at all. haha
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Morning of the surgery. We had to get up at 4:30 to be there before 5 am.
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Getting ready and waiting for surgery.
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We had a private family waiting room during the operation. The surgery started around 7 am (if I'm remembering right) and was finished by about 11:30 or 12.
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Max after surgery.

My heart broke to see him in such a fragile state and to also think about the feelings of confusion he must have had upon waking up in pain with all these tubes and cords attached to his body.
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Liam and me went to get some lunch in the cafeteria while Chad stayed with Max. Then I got the following text-

Chad- "Hey lovely, something is happening but I think they have it in good shape"

Me- "What?!"

Chad- "Don't run or anything they might not want us in here right now"

Me- "What?!"
"What's going on?"
"What's going on? R people talking to u? Is it to do with the line?" (he was going to be getting a line down his esophagus to feed calcium into his stomach.)

Chad- "He struggled with that nose tube and something started up the drain bleeding a lot so they think he popped internal stitches and they are going to surgery"

I was so ingrossed in the texts that Liam gladly finished off the huge brownie that I had bought for the both of us. We raced up as soon as we could. Man was it was sobering to find about 8 doctors and nurses surrounding my son!  There was no holding back my ugly crying face.

I later learned that Max had thrown a tantrum and dramatically arched his back off the hospital bed. It was after this fit that his chest drain began rapidly filling with blood. Unfortunately, the only IV was in Max's foot in a smaller vein, which meant that replacing the blood he was losing was near impossible.  The doctors suspected that he had broke internal stitches during his tantrum.

He was raced back into surgery once again.  The doctors were right.  The were able to stitch him back up…but this time they put a few more stitches in to make extra sure that something like that didn't happen again.

Chad later got choked up as he recounted the event and how he saw the color leave his lips and body. He thought for a minute that he was losing his son and there was nothing he could do. He also admitted to me later (once we were discharged and home) that he was having nightmares every night about that event. I think it was more dramatic then I'll ever comprehend.

The doctors and nurses had different things to say. Two of them sought me out and told me how impressed they were with how Chad had handled the entire situation. And one of these nurses told me that several of the doctors had said the same thing regarding Chad. They were so impressed with the composure he maintained in the chaos.

After the 2nd surgery they would bring back Max on a ventilator.  One of the problems they had had earlier was finding the appropriate level of sedation meds (enough to keep him from throwing a tantrum, pulling at IV lines, etc., yet not so much medication that it interfered with his breathing).  They thought it best to keep him more sedated to give the stitches more time to settle in and to slowly bring him back.
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This was after getting him off the ventilator. He was soooo thirsty and it was heartbreaking to only be able to offer him little water filled sponges on a stick to suck on. They would appease him for maybe 15-20 seconds and then it was back to crying for more water.

I stayed with him that first night. Luckily the nurses eventually let him eat ice chips and then seeing him do so well, allowing him to graduate to little sips of water and apple juice. He was a new man after getting something to drink! Soon he fell asleep. I was grateful for that. It had been a long day and I was tired as well.

Max had to have restraints on his arms because he kept trying to rollover, get up, or pull out different lines and cords. (Prior to the surgery I had worried about this and the social worker had reassured me that kids are smart and that they won't tug on the lines because it hurts. Apparently Max is more of a fighter…that or stubborn. haha)
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Every day there were new improvements and soon we were moved from the PICU (Pediatric Intensive Care Unit) to the TCU (Transitional Care Unit). We rejoiced with each cord, strap, or line that was removed. At this point, the hardest challenge was telling him that he couldn't get out of bed. "I want down" was his constant plea.
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This was his first venture out of bed. I wasn't there for it. Chad and me alternated nights for who would stay at the hospital and who stayed at the hotel with Liam. It had been my night with Liam.

Max's first venture out was a wagon ride and soon thereafter he was cruising the hospital halls in a car or pushing around a stroller.
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These pics were one of my nights with him. The little booger wanted to walk the halls around midnight. Man was I tired!
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Entertaining two little boys in a hospital isn't the easiest thing we've ever done. We'd come prepared with trains and tracks, movies, books, and iPads. These things helped, but we all still felt a little cabin fever.
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The hospital also had a few diversions. Liam loved his first exposure to the Wii.
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Monday night I stayed with Max because we anticipated being released the next day (Hallelujah! Originally they had told us 5-7 days…but that we could expect the longer end of that estimate since we lived so far away.) and I figured Chad would probably be our driver home and he needed the sleep more than me.

There was a huge storm that night. The nurse woke me up at midnight to move our beds as far away from the window as possible and to make sure we were covered with blankets. I asked her what would be the plan if there were tornado sirens (Bolivar had its' sirens go off earlier that night). She said we would all convene in the hall…then she added 'although almost everyone on this floor is in isolation, so we may have to find something different to do with you guys'. Yikes! That's exciting!

Luckily no sirens went off. Just a beautiful Missouri thunderstorm.

(And as a side note- the patients in isolation were those infected with the enterovirus D68 that has been sweeping the midwest recently. There were also a few in the PICU as well when we were down there. In fact, Liam ran into one of their rooms. Everyone in the room was wearing a mask and protective clothing. I guess we were being blessed with Max's fast recovery and that none of us (especially my kids) didn't pick up that!
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More milestones the next day! We got to get his chest drain and pace maker wires out. Man, I was not prepared for that one!

There were stitches holding the pace maker wires in place. After the stitches had been snipped, the doctor gave them a good yank and out they came. Max, already crying, let out a piercing scream. I imagine having cords yanked from your heart tissue is not a pleasant sensation.

And then there was the chest drain. I looked away. But dang peripheral vision!  Out of the corner of my eye I could see the drain tube as it was being pulled and pulled and pulled out.

Oh my goodness! I could not be in the medical field! It was a good thing I was sitting down! I felt faint, nauseated, and my arms had lost their strength. I tried to keep my composure, especially in the presence of the doctor and with Max crying and needing comfort.  But once the doctor had left and Max had calmed down with an iPhone, I had to lay down. Chad probably should've been the parent there for that one! haha

Here's some before and after pictures.
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A sponge bath soon followed. He didn't like that much. (And the left picture makes me laugh. I have all these pictures of tender moments with Chad and Max, but me…I get the crying, unhappy pictures. In this particular picture he was kicking me because I reattached the oxygen monitor that had come off his toe).
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We were discharged from the hospital Tuesday afternoon. Max's smile just about sums up all our feelings!
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Farewell Cardinal Glennon! We will always be so grateful for the excellent care that we received from you…but we do hope we don't have to come back. :)
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3 comments :

  1. So glad Max is doing so well! We've been praying for him, and you every night last week.

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  2. My goodness, I cried during this whole thing. What an experience. We love you all so very much. What a strong family.

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  3. Few thoughts.
    Love you guys.
    I am beyond happy that everything went so smoothly.
    The part with chad had me crying. I was so worried about him... and the punk really was struggling even if he pretended he wasn't. he's pretty amazing. but still a punk.
    enterovirus D68. ahhhhhhhhhhh. I just about died. so glad you guys didn't pick that up. apparently liam is a punk too {wink}. running into that infected room. gives me major heebie jeebies! honestly it's crazy to me that they were on the same floor as you. can you imagine if max (fresh out of heart surgery) caught it. No I have serious heebie jeebies right now. gag.
    we love our wii. our whole family will play mario. nothing better than a good just dance - off. maybe santa can bring one :)
    Blame the faintness on pregnancy. (even if it wasn't). it's the perfect excuse for anything. use it while you can!
    Last but not least. That Max. Killer smile. Seriously his smile puts the goofiest grin on my face.

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