Saturday, January 26, 2013

A robot inside Adam

Adam had the last surgery in our family's crazy 4-surgery week. He had a few moments of being nervous about it because he walked every step with us on our Boston journey with Sara. I tried to make it fun and silly by telling him there was going to be a robot inside his tummy. It works really well for the kids in dealing with things but it also means that when we go places, they could start talking to a waitress they have never met before and say "I had a robot inside me to get rid of a blockage I have." You should see some of the looks I have gotten...and then the follow up looks when I tell her that he is right!

This time I was really struggling to find a sitter for Sara. My mom was not recovered well enough from surgery and the couple other options that were "usuals" were unavailable. A person from the twins' group finally came to mind the day before Adam's surgery. She has been to our house before with her little girl and Sara just adored them. She constantly comes to me and says "this is my baby named Clara and I'm the mommy named Christina." Thankfully, it worked out perfectly.

Sometimes it's hard to limit the kids' food on the day of surgery. This morning Adam enjoyed a fun dumper truck jello breakfast, complete with a full load of "rocks."


I got a phone call from the hospital again asking what time I would be there. Shannon met me there during his lunch hour but unfortunately, this time Adam and I were going it alone. Shannon had to teach the last day of a multi-day class that already had to be rescheduled once before.

Weighed, measured, pick a cool hat, find our way to the pre-op room. You know the drill, right? We got the exact same pre-op room for the 3rd time now! And the same nurse! Yellow this time...





No iPad so we headed to the playroom. Adam found some of his favorite things--Lightning Macqueen's of all different colors!



We ran into the nurse from Adam's 1st stent surgery who gave him a piggyback ride into the OR. It made me a little emotional to see her bend down to his level and be excited to see him. He remembered her, gave her a high five, and they chatted a while before hugging and saying goodbye. We really have met some great staff.



It was a long almost 2 hours of waiting for surgery to be over. I learned that waiting by myself is much harder than waiting with Shannon. They were finally done and the doctor said everything went as expected. The blockage was hiding behind the liver. He was able to open it without removing part of the ureter, which was great news.

Adam did pretty well in the first part of recovery and wasn't in too much pain. He was able to fall asleep once they gave him some pain medicine and then we were transferred to his room on the 5th floor. He had a great view of the Peoria skyline and the Lifeflight helicopter pad. At one point a helicopter took off straight up and he could see it thru his window before it turned and flew away.



Originally the plan was that Shannon would pick up Sara and my mom after he got off work and head down to the hospital to see Adam. On their way, I had to tell Shannon the hospital was not allowing any visitors under the age of 18 because of how bad the flu and other illnesses were in the area. Adam enjoyed an orange popsicle and then we were able to do a skype session with everyone at home. That helped Sara, who was really missing Adam.

The anesthesia was making Adam feel queasy off and on. This green bag became his new best friend in the hospital and for a while at home, too.


Overnight was probably worse than Sara's first night of being checked on in Boston. It seemed like someone was in there every hour doing something. I think meds and vitals could have been timed and coordinated much better than they were.

Our biggest goals for discharge were to be drinking lots of fluids, eating a little, and having a bowel movement. No poop, no home. His pain level was pretty good. What a difference between 11 hours of surgery and 2 hours. He was a little sore in the belly where his 4 ports were, battled with the upset tummy, and had a shoulder that was quite sore. The nurse said the air that they put in your body during surgery has to go somewhere and typically it settles into a pocket in a shoulder and can be pretty uncomfortable. Adam does awesome with breathing thru the pain. He would put his little forehead against mine and breathe out slow with me when he needed to.

We read books. We looked at a Ford Mustang magazine. We walked and took the wagon to the playroom. We ate popsicles. I must say the hospital food was pretty good, better than Boston. A volunteer stopped by and gave Adam a Towmater lego to put together and take home. We ate a snack.


Still no poop. I was beginning to think we were going to have to stay another night. He tried a few times but it hurt his belly too much to push. The nurse tried a suppository and couldn't get it in. After having a very emotional hour, we were finally successful. Shannon was going to drop me off clothes but didn't know what to do with Sara. He ended up sneaking her in Adam's room. Thankfully, no one said anything. Sara was really mopey all day long without him and she was so happy to see him so she could mother on him and feed him Teddy Grahams! Finally...a bowel movement and we were released!



Even when we got home Sara was playing doctor with him!



Friday night Adam slept in our bed, which was good for the number of times he woke up and needed medicine or just a snuggle in the middle of pain. Dealing with the catheter was the biggest nuisance. The doctor said *I* could take it out on Monday. Pass. I lined up a couple possible nurse friends from the twins' group I belong to.

Sunday afternoon Adam slept in his own bed for a nap. When he got up, I thought it was very strange that his catheter bag was completely empty but dismissed the thought. Shannon and I left for a NICU Family Advisory Board meeting. When we got back, his catheter bag was still empty. I knew something was definitely not right. I tried to examine if there was a problem. It seemed a little twisted at the top but nothing I did helped it flow again. Adam's belly hurt so I made him try to sit on the potty and he ended up peeing out the catheter all over. Shannon figured out there was quite a kink in the tubing and got it fixed. However, the catheter had shifted slightly and was causing Adam some discomfort. One of my PMOT friends was willing to come over after her kids were tucked in bed and remove the catheter. It was 8pm Sunday night by then and shouldn't cause a problem coming out just a little early. It didn't take Adam long to forget about the pain of getting the tape off and pulling the catheter out and realize he enjoyed the freedom much more.

Recovery last week went very well. Adam was able to get up and down from the couch, his bed, and dining room chair pretty quickly. Bouts of upset tummy come and go. He knows where his stent is and when it causes him pain. There was one day he did way too much running thru the house with Sara and then was in a lot of pain that night. We listened to him complain in a restaurant for an hour that he thought he was going to be sick. We have learned that is usually a side-symptom of his stent pain. Sara has had blood in her urine since then, 3 days ago. I'm getting a little worried about it. The doctor would say it's no big deal and is common when there is increased activity which causes the stents to rub. However, she has not had blood in her urine at all for probably 4 weeks.

The nurse said Adam's ports are healing well. No baths for another week. No pools for a few weeks. Final surgery for the removal of the stent is February 28.

The hardest part of this procedure for me was seeing his belly. Sara's belly was much more distended from her bowels waking up so slow. But she had white steri-strips and bandaids covering her incision ports. You can imagine my surprise the first time the nurse lifted Adam's shirt and the only thing covering Adam's incisions was some clear tape. I am used to it now. Mostly.


1 comment:

Jenny said...

Wow...you guys have been through so much. Always in my thoughts and prayers:)