Linus had his 7th surgery, a g-tube placement, on Monday, July 11th. My mom drove in the day before so Trina and I could both be with him at the hospital during his surgery and for the first night. I was mostly in denial about the whole thing, like it wasn't really going to happen. Even so, I couldn't sleep the night before. After what amounted to a short nap, we got up at 4AM, got ready, packed up Wee and were on the road less than an hour later.
Driving up to the hospital is like going back home. I feel like I know every inch of that place. We're surrounded by familiar faces, sights and sounds every time we go in. Even the security guy recognized us and greeted us with a "You're back!" and a smile. Waves of nostalgia hit me as we road the elevator up to the 17th floor to sign in and wait to be taken back to pre-op. We sat in the Heart Center Family Waiting Room with a buzzer like so many times before. The hour and a half we waited seemed to simultaneously fly by and drag on. We spent the time with our boy, laughing and snuggling and trying not to think about what was coming. Then our disk was flashing and vibrating. It was go time.
We hopped back on the elevator and rode it up to the 18th floor. You see, even though Linus was having a gastrostomy performed by a GI surgeon, it was done on the cardiac floor in the cardiac OR with the cardiac nurses and the cardiac anesthesiologists. See the pattern there? Linus is, first and foremost, a cardiac patient. We were relieved to learn this was how things were done. They know Linus there, they understand how fickle he can be and how fragile he is regardless of his outward appearance. We were absolutely thrilled to find out Linus's anesthesiologist was an "old friend" of our boy. They've had lots of one on one time in previous visits both in and out of the operating suite. We went through the familiar motions of talking to the surgeon, the anesthesia team, some nurses and signing or initialing a million different things. Yes we know what's going to happen, yes we consent, yes we know he can (but probably won't) die, yes we still consent. Then the time came for him to leave. We each kissed him, handed him over to his anesthesia buddy and off they went smiling at each other. I surprised myself and didn't cry.
Trina and I headed back down to the Heart Center Family Waiting Room to, you know, wait. I hate waiting. My stomach was in knots. I wanted it to be over already. I tried to pass the time by reading, but couldn't focus. I ended up mindlessly surfing the net. An hour and a half later we got word that the surgery was finished. We were sent to a consultation room to wait for his surgeon to come give us a run down of how the procedure went. The door opened and we were surprised to see his cardiologist walk in. My stomach lurched before I saw the big smile on her face. It took me a frightening millisecond to realize that she wouldn't be smiling like that if she was bearing bad news. She told us that as she was upstairs performing a
TEE on another patient, she looked up to find Linus smiling & floating in the window Peter Pan style. I couldn't help but laugh. This is exactly why we love the TCH staff. Who else would fly your kid to surgery making sure to stop by and say hi to his favorite people along the way? She said he looked great and had asked them to do an echo while he was under anesthesia so he was going to be upstairs for a little while longer.
A few minutes after she left, our GI surgeon popped in. He said the procedure went perfectly. No issues with anesthesia, no unexpected bumps and no blood transfusion was needed. We were practically in shock. Our kid didn't throw any curve balls? That's so unlike him. The fact that he didn't need blood was down right unimaginable. He ALWAYS needs blood. This boy is mildly to moderately anemic on a good day. He's never had a procedure and didn't need blood during and after. He's had 22 transfusions for Pete's sake. Ah well, that's my boy. He's always doing the unexpected and luckily it was for the better this time.
Another 30 minutes passed before we were able to go up and see him. We were both so anxious to be in the same room with him again. Being buzzed through the CVICU doors gave me another shot of nostalgia. Once again we were more than pleased to see who was taking care of him. It was one of Linus's favorite nurses who's know him since he was a teeny guy. I felt a sharp pain at seeing him knocked out and covered in tubes and wires again. I couldn't help but notice that he looked bigger in the hospital bed than the last time he was in one. It made me realize how much he'd grown since he'd been home. As we stood there taking it all in, he began to stir and was immediately given a dose of
Fentanyl . The saddest look crossed his face right before he drifted back off to sleep. A short time later he was able to trade in his O2 mask for a nasal cannula. The next time he came to, he was in agony. They started him on Morphine and thankfully it kicked in pretty quick. I can not stand seeing this kid in pain. He has been through too much in his short life already.
News spread quickly that Linus was on the floor. He had nurses, therapists, techs and doctors coming by in droves to see him. I overheard a "new to us" doctor trying to do rounds the first night. He started off with "This is Linus who, apparently, everyone knows" he was then cut off by squeals and part of his troop running into the room to eyeball our boy. There is no denying that Linus has some serious admirers on the 18th floor. We kept hearing slightly different versions of "I'm so glad to see him, well, you know, I'm glad he's not sick, but it's great that he's here." I completely understood. I was happy to see all of them, too. Especially since he wasn't sick, and just needed a little tweaking. Linus only had to stay in the CVICU for 24 hours or so before being transferred to the cardiac floor. I was actually a little sad to leave so quickly. Even when we were downstairs, Linus's buddies continued to come see him. As people came on shift and learned he was in the hospital or if they were going to be off for a few days and wanted to say good bye in case he discharged or even when they just needed their Linus-smile fix, they'd pop by. His day nurse made a comment about him having a revolving door and asked me if everyone was coming to see me or him. I laughed and told her Linus has WAY more friends than me. He's a popular kid.
After it was apparent that Linus was doing well, Trina left to go home to the big boys. I stayed with Wee. His first 3 days were a little rough. He was either uncomfortable or in pain all the time. He wasn't sleeping well and actually popped a tooth through just to make things a little harder on himself. Other than the pain, he only had two other issues. His blood pressure was staying a little on the low side so they cut one of his meds back a bit. He also relied on the oxygen for a bit longer than normal. This was probably due to his being a little anemic and because the pain was causing him to take more shallow breaths. After a few failed attempts, he was finally able to come off the oxygen on the 3rd day.
The day after surgery, they ran a little Pedialyte run through his tube to see if he tolerated it. He did well so over the next 24hrs they gave a little more and a little more. The next day he was able to have some milk through his tube. Then a little more and a little more. He started vomiting that night so we had to back off a bit and raise his dose slower. It seemed to work for the most part, but he still vomited some. They weren't too concerned since he pukes likes nobody's business at home. The surgeon's people came by and looked at his site. They deemed it suitable. His chest x-rays were clear. His stats were good. Things were moving right along. We heard rumors of discharge.
Trina and I traded places so we could each spend some time with our other boys. On Friday, the 5th day of Linus's admission, I brought the big boys up to the hospital to visit their Mommy & brother. As I was driving I got a call from Trina. They were going to let Linus come home. What perfect timing! We all hung out for a few hours in Linus's room waiting for the paperwork to go through then we got to leave as one big happy family.
It took us a little time to get comfortable with Linus's new gear. The first few bandage changes weren't the fastest or the prettiest for that matter. We learned very quickly that he was not to be without a onsie ever. Not even for a minute. Keeping a foot long tube out of his grabby little hands is no easy feat. There have been a few bumps along the way. We've had a few scares with green drainage accompanied by some redness around his stoma, but luckily no full blown infection. He ended up popping his stitch and bleeding a bit at the 2 week mark. 3 or 4 times his tube extension has popped open and allowed all of his stomach contents to drain out, soaking his bed or whoever is carrying him. Once, the entire extension came loose from the tube and he lost a full feed. Ugh.
Things aren't so scary or awkward 4 weeks out. Like with everything else, practice definitely makes perfect. Trina's gotten pretty good at "burping" him by hooking an open 60cc syringe up to his tube and tickling him or doing bicycle legs until the bubbles stop. We can hook up or unhook his feeds in the dark with only slight fumbling. Bandage changes are now one man jobs. Things will get even easier when Linus loses the PEG tube and gets upgraded to a Mic-Key button next week. All in all I think we're getting the hang of this tube stuff.
Linus & Trina having a conversation while waiting to be taken back to pre-op.
Linus hammin it up, as usual.
Getting in some last minute snuggles before having to hand him off...again.
The sweet nurse put a bandage under his ID anklet so it wouldn't irritate his fragile skin.
Linus right after after surgery. I was SO glad he wasn't still on the ventilator and a little surprised to see an oxygen mask on him for the first time.
He was mostly out of it for several hours, but was able to be downgraded to a nasal cannula anyway.
Post Surgery Gear
An IV in his ankle.
Pulse oximeter on his thumb.
Blood pressure cuff on his arm.
Inside this diaper is a vacuum container draining off any excess stomach contents. The diaper is there in case the container leaks, which it did.
EKG leads to make sure his heart was behaving. It was for once. :)
Linus was pretty groggy when he finally started waking up.
When the pain hit him, it was awful. My heart broke into a million pieces seeing this face. He was started on Morphine, then later Tylenol 3.
The next morning he noticed a bright orange bandaid on his heal. He wanted it.
I was able to redirect his attention to his favorite ball. This goofy kid uses his feet as much as his hands. A side effect from being on his back in a hospital bed for most of his life, I suppose.
We fill up the bulb of pacifiers with water, freeze them and give them to him when he's having teething pain or to distract him when he's gagging. At this moment, it was for his teeth. He popped one through that morning.
He was pretty excited to finally be sitting up again.
I'm always amazed that this kid smiles so much. Even when he's bogged down with oxygen and IV's and leads and even fresh surgical wounds, he's a happy kid.
On the 3rd day he was finally able to be weaned from his oxygen. He was facial tube & tape free for the first time since Dec 21, 2010. LOVE this face.
He decided to grab & pull his new tube. SO not a good idea. My heart dropped and he cried. Luckily no harm was done.
This is Linus getting his very first bit of milk through his new tube. It had been three days since he'd eaten.
All tuckered out. This kid loves to snuggle with his Lovie.
Simon & Dexter having some lunch while waiting for Linus's discharge papers to come through.
Linus thrilled to be home.
Linus & Joe Joe Bear hanging out in the baby cage.
After only a week, Linus started rolling half onto his stomach in his sleep. I'm so glad the discomfort is fading fast.
We tape the tube into a spiral and tuck the Y-extension in his diaper flap so there are 3 fail safes before any pressure is put on his sutures if he decides to yank on it.
This is what Linus's unbandaged tube looked like on day 6. The blue line is just pen. They marked his midline for positioning purposes. Under the tape is a 1" incision.
This is what Linus's tube looked like on day 22. The incision healed up nicely. There is some granulation tissue at the opening of the stoma that will have to be cauterized off. Overall, it looks pretty good.
