Sunday, August 7, 2011

G-Tube Placement

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.
Bandaging over his abdomen covering his PEG tube and new stoma.
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.


Mijke said...

Glad things went well with both the surgery and recovery! And yes, he does have the most wonderful smile, even in the worst of circumstances. If he wasn't so loved by all of you, I would totally eat him up! ;-)

I get the strange 'coming home' feeling while entering the hospital. Our twins' stay wasn't nearly as long as Linus', but still. I spent over a month at the same floor meeting the same nurses and doctors all day every day, and the two following years the same pediatrician, cardio, physio and pre-speach therapist (and our old nurses whenever we'd drop by their old rooms) every time we went there. I felt a bit sad (and even a tiny bit scared) when after two and a half years their files were finally closed and they were 'set free'. Yes, it marked the start of their lives as 'normal healthy kids' instead of preemies, and we were so so happy with that. But we were also saying goodbye to the people that watched them grow from the tiny fragile little babies they were into the healthy happy toddlers they became.

"Wow! Look how they've grown!! They are doing so well!" just sounds so much better coming from someone who knows where they came from...

moi + toi PHOTOGRAPHIE said...

wow. they way you write is like we are right there with you. I always let my wife know how linus is doing. Happy that the surgery went well!

A+K said...

Sounds like things couldn't have gone better for Linus with his tube placement!!! I promise, your life will be 10,000x easier once he gets his Mickey. Promise!! If you said it in the post, I totally missed it, but I'm curious to know what his feedings are (continuous, q3h, gavage?). My GT kiddos are some of my favorites I work with! If you or Trina ever want to talk about any feeding stuff, please feel free to shoot me an email!!! (dosbabymamas (at) yahoo (dot) com

laur w said...

Sweet boy! What a flippin trooper! (the moms too!) Go Linus and your pretty tape free face!!

Meagan @ The Clanahan Fam said...

Thank you for continuing to share Linus's story --- and thank God for such a great outcome on this surgery. You guys are such a great source of strength for me as I continue to read more about Linus. I am SCARED TO DEATH letting Quinn go off to surgery in less than 6 weeks, not knowing how I am ever going to hand her over to the surgeon team. But if you guys can do it 7 times, then I know we will get through it and survive. Blessings to your family (and btw, when Linus smiles, it is just so heartwarming (no pun intended) - what an awesome kid!!!)

Heather said...

I am truly amazed at all little Linus has had to go through and how happy he is! You and Trina must be doing an amazing job! I hope his trials become less and less and someday he will be perfectly healthy. Thank you for sharing this difficult story with us.

N said...

Looks like it's healing really well! I'm so glad everything went so smoothly.

Allison said...

Glad to hear everything went well with Linus' surgery. I actually teared up when you were describing the staff all coming to say hello to him. How reassuring it must be to know how much they all care for him. Hope things are going well with all three boys and both of you, as well.

jen said...

Linus is so freaking amazing! With all the surgeries and hospital stays, I'd be hard pressed to find the will to smile, but your boy ... he's just phenomenal. Way to go, Linus! :) Hope things get a whole lot better for him and your family as you continue on this journey. Thoughts, prayers and continued happiness to you all! :)

Pomegranate said...

It's so great to see his whole sweet face! You all have smooth sailing from here on out.

Anonymous said...

What a boy! I can imagine how you must have felt bringing him back there but how wonderful that he has lots of friends at the hospital. Glad to hear he is home and happy!

Anonymous said...

I'm so glad to read this, this makes me smile ear to ear. Linus is such a love, I'm sure you are all so happy to have him back home and doing so well. I keep your entire family in my positive thoughts and Linus in my prayers. Thanks for the update and the cutie patootie pictures of him.


Kel said...

He is a sweetie!! It is so hard to know that babies go through this, but it is such a blessing to have a good recovery & a happy baby. I will continue to pray for all of you!

jade said...

Hurray for Linus and his family - way to go! The other commenters have said it all, I will also continue to keep my fingers crossed for whatever will be following from now on! Hug, jade

Peyton said...

My nearly 4 year old has always been tube fed. This link will take you to some great articles on tube feeding and one has some great products for g tube kiddos. Best of luck.

Unknown said...

Thanks for taking the time to write the update. Glad the surgery went well!

Aura said...

congrats Linus looks great! I have been reading your blog for a while, I lost a son (a twin) to HLHS 3 years ago. We pushed off a gtube for him for some time but were thriled when we finally got it. No more problems with NG tube tape irritating his cheeks, no more reflux. Wait until you get the Mickey you'll be very happy. 2 hints- we really liked IV sponges around the stoma- the slit fit perfectly around the tube and then we covered it with a 2x4 and taped it down. Also we used an AMT clamp to hold the tube and pump wirings together or my son would pull them apart and feed everything around him. Good luck your boys are adorable!

Melyssa said...

Hi. I found your blog about a month ago when I was looking for lesbian mum blogs. I'm also a lesbian parent to one little boy. I don't know how you deal with THREE!

I have to say, I love your blog. Your little men are just SO beautiful! My wife just felt the pangs of wanting another baby just by looking at yours. So special!

I'm glad Linus is doing well. I'm also a nurse over here in Australia, and I know little boys like him that just capture the heart of so many within the confines of what can be such a sad place. Ward clerks from the ground floor come flocking to see certain kids- as you said, a bitter sweet thing to see them again but to know they're back in hospital.

But it's always nice to know, as a mum, that your child is that enchanting, isn't it? :)

Thanks for your blog, thanks for your openness, thanks for your promotion of lesbian centred families who have kids and lead normal lives. You're doing the world a favour, whether intentional or not.


Anonymous said...

Happy Birthday, boys!

Anonymous said...

Happy Birthday boys!!
Can't wait for a b-day post. Hope all is well!

Anonymous said...

Hi girls! Just read on facebook about Linus crawling Yeah! Do we get to see a video?. So sorry to hear about his episodes. Thinking about all of you!

Usemeplz said...

thanks for the high-quality photos, with their help, your problem has been fully understood. Well, we wish you to overcome your misfortune and be happy.

Anonymous said...

Mommy & Mama here...checking often for an update. We have twin girls turning 1 next week. We followed and hoping the reason for your blog neglect is a happy one and that you are not having any issues with lil Linus.

Thinking of you,
Dayna & Carrie

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Anonymous said...

Hi there
I've been checking in for updates, hoping you are just much too busy with your three beautiful boys to find time to blog. All the best,

Mimi said...

Hope all is good.......was wanting to see some birthday guys are scaring me........again hope all is good

Barbara said...

I stumbled across you blog some how and I just love it. I had to go back to the beginning and read through all your entries. I could really relate to the many, many, many entries about the fertility problems and bad doctors that you guys had. My wife and I had the exact same thing. I sometimes think the doctors are just out to make money, and woman will pay anything to have a baby so they play on that big time.

I am pleased for you guys that the latest surgery went well for Linus, he is just such a cute kid.It is amazing how quickly babies can bounce back from stuff that would take us adults for ever to do.

I also love how positive you guys are, and how wonderful you are as Mommys. What are you planing on having the boys call you? My wife and I are trying Mommy and Momma, but we even confuse ourselves and land up saying the wrong names. We are just going to let our son decided what he wants to call us when he is ready.

Thanks for a great blog and putting lesbian parenting out there, Two Mommas are awesome!!

ALO said...

my Wishes for a speedy recovery and Standing happiness