I wanted to get this post up long before now. But after you read this.... and it will be long, but I hope you stick with me, you'll understand why it has taken me sooo long to get this done. And I do apologize for the length. But I wanted to include a bunch of pictures:)
First of all, about two weeks before Josh had his surgery I became aware of an organization called "Tubie Friends". It is an amazing organization that makes stuffed animals with g-tubes to help little kids understand what the G-tube is for and to help them feel more comfortable. I was trying to find a way to talk to Josh about his upcoming appendicostomy and didn't have any grand ideas. So when I found this I emailed the founder and asked about having one for Josh with two tubes, since he would be having two tubes. She was amazing and not only agreed to do it, but also made sure it got here before his surgery so we could use it and take it with us to the hospital. Here is his 'tubie friend' and a short video of him the day we received it. I am forever grateful for this amazing idea!
Now onto surgery. I will warn you now.... if you are squeamish about medical procedures with pictures... you might want to be careful about looking too closely at some of the pictures. Just saying:)
We had to check into Primary Children's a day early to have a cleanout done before surgery. This is right after we got settled in our room and the Child Life Specialist had came to give Josh some things to help him understand what was going to happen. He was going to have an IV placed and they let him practice on this doll. He loved it and was kept very busy with the stuff they gave him. He colored his doll and put an ID bracelet on, a mask (even though we never used masks) and even a heart monitor sticker. It was good for him and I really think it helped this time around.
Also on tuesday (surgery was wednesday), we got a visit from a therapy dog. Josh was beyond excited to see a dog in the hospital and was so elated they let her come in and get on his bed with him. The dog's name was Liberty and she is a standard poodle. I got a cute video of him with Liberty. It was another great thing we haven't had the opportunity to do before.
And now the really not so fun stuff. Josh was supposed to do a cleanout and be ready for surgery at 12:15 on wednesday. To say the cleanout didn't go as planned and well is a massive understatement. I skipped tuesday night's sleep totally because we were running down to radiology to get emergency xrays because of sudden bloating about every two hours. We were doing enema's hourly trying to get his system to get moving. I don't know why he struggled so bad with this, but I am very suspicious of the 'Golytely' that they began with. He does not do well on that and true to form... he had some vitals that were showing the same thing as last time. I think if we had not done that and just did enema's we would have had MUCH better results. But he wasn't in as bad of shape when we were admitted so I thought we would be fine with the Golytely this time. WRONG. So between the stress of the cleanout not happening, surgery time coming up very quickly and me having to have a confrontation with the surgeon... I was a mess! The reason I had to have a confrontation with Dr. Rollins was because of the way I wanted things done. I wanted him to place a Mini-One button, which is a feeding tube button, the same as he had for his stomach, but a tad bit smaller. I had found out that nobody has done the procedure this way in Utah and I wasn't so sure anymore I could get what I wanted and what I knew would be best for Josh. Thank goodness when Dr. Rollins came to talk to me he was happy to do the G-tube button, but was just honest with me and told me he would have to do the surgery different, he hadn't ever done it this way before and he didn't know until he got into the OR how he was going to need to adapt. But he told me that this was about Josh and he agreed that even though we are pioneers at doing surgery this way, he would also keep Josh's best interests in mind. So I was finally feeling good. A little apprehensive because I wasn't aware that he would be doing something he hadn't ever done before. But I was also worried about him not doing surgery at all since Josh's bowels were not cleaning out the way they were supposed to. Thank goodness Dr. Rollins said he would just push it back to the last surgery of the day to give him more time and he would do it regardless of his success or not at the cleanout. Bless his heart!
Surgery took 2 hours and 45 min and went very well. Dr. Rollins came to the waiting room and told me he was very pleasantly surprised with how it turned out and that it was easier than he thought it was going to be. There are some downfalls to how we did the surgery, and there are future issues that we may or may not ever have to deal with. Time will tell. Josh also was supposed to get a new tube put into one of his ears while under, but the surgeon who did it (it wasn't his usual ENT because it was such late notice... so we took whoever what in the OR that day) actually ended up replacing both ears. This is set number 5. Let's hope this is the LAST time we do this. Right? But that went well too and I was so thankful to get two birds with one stone.
So here is my baby boy. True to Josh fashion, he curled up into the fetal position after we got back to our room and stayed there for awhile. They nurses had a hard time getting his blood pressure cuff on, pulse ox probe and heart monitors because he was so tightly curled up. He took awhile to wake up, but it was nice being inpatient so there was no hurry.
This is after he finally woke up for longer than a couple minutes. He had gotten out of surgery at 7pm and this was like 11pm now.
This is his appendicostomy tube. He also had an incision covered by cotton balls down his belly button and the two bandaids covered the laproscopic sites. I knew about the incision in his belly button, but was surprised he had two more cuts as well. SURPRISE!
I won't lie and say this was easy. It was so incredibly difficult to see how much pain he was in. He would cringe at every little movement and my eyes would tear up and I would think.. 'what have we done to my sweet boy?". It was rough. I wish I could say that everything was smooth sailing, but it wasn't. Nothing with Josh is ever easy. He had an irregular heartbeat that was documented. They called cardiology. We had to do about three EKG's and finally they said they 'thought' it was pain related and he would need to follow up post surgery in a couple months. He had his usual nausea and vomiting, which was horrendous with abdominal surgery. I didn't sleep much more than 20-30 min at a time even though we had great nurses. His alarms went off non-stop and we rarely went a half hour without a Nurse or Tech running in to check him.
Thank goodness we had some visitors to distract him! My parents and sister Chantel came down on thursday night to visit Josh. They brought him gifts and a balloon. He got some match box cars, an airplane, helicopter, stickers, coloring book and of course he was in heaven. My sister took this picture of him and it was one of the first time we were able to raise the head of his bed so he was sitting more upright.
This is just a quick shot of his tummy the next day. He was so protective of his stomach he wouldn't even let us look under his gown. It took the iPad to distract him and get this picture.
This is Josh on Friday almost 48 hours post op. He was starting to take some sips of Gatorade and play his iPad more. He felt pretty crappy though.
Friday morning, my mother in law, Shari came to visit. She had just flown back into Utah from a work trip to Oakland. She came and brought Josh this monkey. He loves it... and still laughs when you squeeze it and the monkey noise goes off. It was so nice to get some visitors because they distracted me as well:) And my sister in law Allyson who works at PCMC went with Shari to lunch and they brought me back something for lunch. So nice of them!!!! It was soo good!
This is right before I changed him into his clothes and we were discharged. As soon as I took this picture, he got right back in his bed and layed down. But it was nice to see him get up. He still was not walking or sitting on his own.
This sums up how he felt about going home. He was so overwhelmed and hurting so bad... I hated that we had to drive an hour to get home.
This is where he spent the next week. I carried him in from his bed at night to the couch and he didn't get off this couch. He was throwing up alot and hurting so much. I am not going to lie... it was very hard emotionally and physically on me. He could not do anything for himself... not even sit up yet. I was a bit overwhelmed. I never imagined I would bring him home and him not being mobile at all. It was so one on one that I basically had to ignore everything else. Even the other kids. Which of course Kaitlyn was thrilled about...
Then the first few cleanouts with his appendicostomy were not even close to what I expected. He would lay on the Chux pads and be in so much pain that I was almost panicking. The first two nights he basically checked out on us. There is no other way to describe it. My mom had come right when it happened the first night and even though she was calm... I could tell she was extremely nervous. Josh just wasn't responsive. We were slapping his face and literally yelling his name and he was unresponsive. My mom got her little light and checked pupils and they were not responding to light. I think we were very close to either rushing him to the local ER or calling 911. But during this.. he had poop leaking out and his stomach was so distended from previous flushes not resulting in poop. We did a 500ml flush and about 900ml came out. His stomach went so flat it was almost scary. Then he started to respond to us and wake up so my mom stayed and helped me do a dressing change and sponge bath. I was never more grateful for my mom that night. She was a lifesaver. For me and for Josh.
The second night wasn't quite as bad, but he still 'checked out' on us. Then the violent vomiting started and continued all night. Again, I skipped a night of sleep and just sat on the floor by him holding his hand and rubbing his back and wondering again if I was going to make it through this.
I took some pictures of him and I will warn you... they are so heartbreaking to see. But I needed to show the doctor (who of course with our luck was out of town for a week after Josh's surgery) what was going on.
This is the hardest picture to see. He was not responding to me again when I snapped this. I HATED this.
How does that not break your heart?
If you are squeamish don't look to close to this picture. His tube site started to get an infection in it and I think this contributed a great deal to the pain and issues we had going on. We got some meds for it and he started to improve in a couple days.
I got him off the couch and sitting on a beanbag for his flush. He was starting to want to play again and this was so exciting!
He finally got down to play! He was really sore, couldn't bend over and couldn't stand up straight without hunching over slightly, but he was finally moving again!
I did two days of bolus feeds so he could have all the freedom he liked because he wasn't quite ready for his feeding pump backpack yet.
And finally passing the last hurdle so he could begin school. He wore his backpack all day on tuesday the 28th and we went shopping to three stores to make sure he had the stamina to be able to do school. He passed with flying colors!
I had waited for so long to see this sweet smile! He took this picture with my phone all by himself, but it's such a cute smile I had to keep it.
Josh will have his 4 week post-op visit this next tuesday on sept. 11th. I wish that things were all hunky dory for him, but they aren't. He hasn't adjusted to the flushes like I had thought he would and things are still going rough. He is still vomiting every night after we do his flush. His motility is so stinking crappy that the saline is not moving through very fast and just sits in his intestines putting pressure on his stomach. The only solution I have right now is not a good one. Right now we shut off his feeds an hour and half before we flush. I then use a diaper to drain his g-tube in during his flush and for the 3 hours or so after. Now he only vomits if he gets too much water or something in that time frame and if I do meds too fast. But he has also lost 3 pounds. I called to talk to the surgeon and they told me to call his GI doctor because she is who we need to go to for nutrition, vomiting and weight loss. Until we get a flush routine that works for Josh we are between a rock and a hard place. She wants to go to a GJ tube for awhile. Basically that means that we will bypass his tummy and a tube will go from his G-tube site down to his intestines and feed him directly into those. I told her I wanted to take the weekend to think about it. So we may be making some changes on tuesday that I never thought we would be doing. It all depends on what both his GI doc and colorectal surgeon can come up with.
So that is how Josh is doing in a nutshell. You may be wondering why we did surgery and if it was a mistake. I just want to make it clear that even with all the problems we are having, the flushes do eventually work and we are getting him cleaned out. That was my only goal with this surgery. He had an xray done a week and a half ago and it was the best looking xray he has ever had. So we are on the right path... it just has a ton of bumps in the road. Hopefully soon we will have a better routine that works for him. In the meantime we will just hope for the best!