Sunday, March 13, 2011

13 Weeks and Catching Up!

It has been awhile since my last blog post, but I think after reading this, you'll know why.
When John Michael was born, he had a mass on his behind- literally almost blocking his rectum. The doctors all seemed baffled, so they called Children's Hospital to get a surgeon over to look at him. That surgeon was Dr. Beierle, who has become one of the greatest people Michael and I know. She said that she thought it was a hemangioma, and that we would keep an eye on it to see what it did- thinking that it would go away on its own. After many visits to Children's Hospital, we started noticing that it was getting bigger. Dr. Beierle said that there was a treatment for hemangiomas- basically treating JM with beta blockers- which would reduce it and make it go away. So, we had to have a biopsy done in order to make 100% sure that's what it was, and then we would continue with the treatment. At that time, the biopsy was going to be the hardest part, because it would involve anesthesia, surgery, and alot of post-op care because of where the mass was.
After the biopsy, we went home and JM slept the majority of those first two days. But when he woke up, the screaming began. I think Michael and I took him to the doctor twice that week because we just couldn't console him. But nobody had an answer for what was wrong with him- everyone pointed to everyone else.
A week went by and we had not heard the biopsy results, so we called. They told us that the pathologist wanted to send it off to another lab for more stains, and that the results would be another week. Cue worry, stage left.
After the second week went by, Dr. Beierle called to give us the results. It wasn't a hemangioma after all. It was a rhabdomyoma- or benign tumor. However, there are only two cases in the English speaking world of this showing up where it did. So unfortunately, medicine wasn't going to make it go away. We would have to schedule him for surgery.
By this point, I was getting closer and closer to the time that I had to go back to work. We scheduled his surgery for the Thursday before I was to return to work (my first day back would be a Wednesday). We arrived at Children's Hospital at 6am, and sometime mid-morning, they took him back. He had only been allowed pedialyte from midnight until 4am, and we were trying to prepare ourselves for the days to come as he wouldn't be allowed anything for at least 48 hours after the surgery (as to reduce bowel movements). We stayed at Children's until Sunday when we were allowed to go home. The first three days were hard but blessed, because we had the BEST nurse on the planet, Nina. Our last day was pretty bad. He threw up everywhere, and our nurse that day was less than helpful. Michael and I were nervous about taking him home, but we bit the bullet and decided that we had to. I mean, really, we had to- what else were we going to do?
Monday and Tuesday were usual post-op days. Michael and I spent our time figuring out all of the new meds that JM was going to have to take. I tried to write out as much as I could because we would have family coming to keep JM starting Wednesday (when I started back at work). Wednesday was fine. I didn't know how I would be my first day back at work, but I did surprisingly well. Thursday was when it all started again. My mom was keeping JM and she and I had noticed blood in his diaper that morning. After calling back and forth with the surgeon, we took him in. Turns out his stitches had busted loose, but there really was no way to stitch him back up again. So we were given instructions to keep the area as clean as humanly possible- which would now include at least two baths a day. I worked from home so that I could be here to help, instead of just handing him off to family members.
And that brings us to tonight. He is currently in and out of sleep in his crib- I think the time change messed him up. We have a doctor's appointment tomorrow morning to see if he's healed up at all. The plan right now is to probably keep him out of daycare for another week and let family keep him at home. But, we'll see what the doctor says in the morning.
This post has probably jumped all around, and if so, I apologize. At this point, keeping a thought straight is like being in a one-legged kick starting contest. Here are some pictures of our journey through the hospital.
Before he went back for surgery

After surgery- very swollen

With Nina, the best nurse and friend!

The day we got home from the hospital

His makeshift hospital bed at home


Cheryl Clarke said...

Bless your hearts (and John Michael's)! This has been a difficult journey. Thank goodness you seem to be nearing the end of the bad stuff. The pictures of JM are so cute. Love you all!
Cheryl and Gene

Ralph said...

You are in our thoughts and prayers.You two are great parents.JM is so precious. God definitely has great plans for him.Praise God

Steven and Caroline Bobo said...

Well...where to start!! My PRAYERS ARE WITH YALL!! Goodness ya'll have been through so much. I know you are tired and ready for it to definitely be behind you and JM. I see the light at the end of this tunnel! Praising God for your sweet nurse and for all the Lord is doing through this!! Love you!! Hang in there :)

Brandie and Jason said...

Kay! I had no idea!! I want to squeeze him and kiss him all over. I am so thankful that he is healing. I am sure that you are one tired momma. We will be praying for you all constantly. Thankful that we serve a God who is the ultimate physician. We love you!!

Jessica said...

We are praying for you guys!