A Blanket That Gives Back

Monday, February 24, 2014

It was really hard to watch our son Cruz endure all the testing and procedures he went through his first
year of life. It was even harder to find out the very invasive treatment he had to endure twice daily,
since birth up until he was 10 mos. old was the wrong treatment. We didn't know the extent of Cruz
birth defect until he was 12 mos. old. Scott and I decided to take Cruz to what is known to be the best
place for a pediatric patient with an anal rectal malformation. We live just south of Seattle, and the
hospital we would be taking him to was in Cincinnati Ohio. This means Scott and I would be away
from our 4 yr. old son Julian and 2 yr. old son Cole for the first time. It was a really tough decision but after a lot of praying it seemed like the right decision. We were suppose to be out in Cincinnati for 5 days max. Cruz was going to go into surgery to have the mass removed from his rectum, have a colostomy bag placed, and sent home. We would have to return to Cincinnati in a few months to remove the colostomy bag, but we would cross that bridge when we came to it. The day arrived for us to leave, and anyone that is a mother and has never left there children for more than a few hours understands the gut wrenching feeling you have walking out the door.


So we said our goodbye's and headed to Cincinnati. It was a beautiful hospital, the nurses were nice, and we were very anxious to meet the Dr. that would be performing Cruz surgery. Our first day we checked into the hospital Cruz would have to get an MRI. This is the MRI that should of been done at birth, it is a simple procedure that would of saved Cruz the daily procedures he had gone through for months. After the MRI we were taken to Cruz room where he would be the next 5 days.

That was a rough first night because he had to have a tube placed down his nose that would administer medicine into his tummy. Cruz pulled the tube out 5 times, and that meant it had to be reinserted 5 times;(.  This would allow his bowels to be cleaned out before surgery the next morning.

Surgery day had finally arrived! What a bitter-sweet moment. I was sending our baby off to be fixed, this meant no more twice a day probing, and we would finally get an accurate diagnosis for his birth defect:).

Half way through what was suppose to be a 4 hour surgery we are called into a conference room by the surgeon. He explains that they removed a 8cm long duplicated rectum. That is what was causing Cruz to have limited bowel movements. He also gave Scott and I the option of NOT doing a colostomy bag. That means we would NOT have to leave Julian and Cole again and come back to Cincinnati for a second surgery to take down the colostomy from this surgery, but it also meant that we would be in the hospital for an additional 5 day's. The additional 5 day's was needed because Cruz would not be able to eat for 10 days, so his bowel would be on rest, and the surgery could heal. Cruz would be fed through a picc line that would be inserted in his arm.  That would be 10 day's total away from my babes back home, instead of 5. So Scott and I decided to stay the 10 days. Scott would fly home and be with the boy's over the weekend and fly back, and I would stay in Cincinnati with Cruz. 

The first night after surgery was no fun. Cruz had a 102.9 temp, which is very uncommon after a surgery. You could expect to see a slight fever, but this was too high. (Did I mention I am a pediatric RN). 
Cruz is still fighting a temperature on/off, and he doesn't seem to be getting any better. I kept asking questions, but I didn't want to seem like an overbearing mom, a Pediatric RN know it all
mom at that. 

Scott is hesitant to leave because of the ongoing unexplainable fever, but he knows someone needs to go home with our other 2 boy's. He say's good bye!

There were some long hard day's without Scott there and no family in the area. Cruz not only had this unexplainable fever that would come and go, but now since the surgery Cruz was not going potty on his own. This had never been an issue before, and again they really had no explanation for this. They said maybe his bladder would have to be retrained. I asked if there was a possibility of infection, and could we do a CT Scan. My nurse assured me that he didn't need a CT Scan because the team of Surgeon's that did Cruz's surgery didn't get infections. They ran several test but a CT Scan would not be one of them. 

Aunty Tasha and Uncle Darryl come to my rescue. Scott and I have always been blessed with amazing friend's. His best friend from college found out that I was in Cincinnati by myself with this sweet baby that wasn't getting better. They live in Alabama, a 2 day drive away from me. When they heard everything that was going on they put there 2 kids in the car and drove out to Cincinnati to be with me. Talk about a service of love. 

Yay, Scott has returned, but Cruz is not going potty on his own, and still has an unexplained temp. They tell us we are going to have to help Cruz go potty by inserting a catheter every 4 hrs. around the clock. We are shocked!! We want to take our baby and go home. We have been here for 12 day's, and I want to get back to my other boy's that I so desperately miss. 

Day 15, Cruz has a low grade temp, we have the insert a catheter every 4 hours so he can potty, but they are going to let us go home. 

We are home for a few day's, Cruz is on antibiotics so his fever is a low grade fever, but my gut is telling me that something is not right. We take him up to the Emergency room at Seattle Children's hospital. My gut was correct, Cruz is really sick, the surgery that was done in Cincinnati had come apart and he has a major infection. Cruz was admitted to Seattle Children's to have yet another surgery. 

Cruz comes out of surgery with a colostomy bag, and incision in his belly so the infection can drain, he has to have a picc line reinserted because he has osteomyelitis (bone infection) due to the infection being in his body for so long. So he will need powerful antibiotics for 6 weeks to be given through the picc line. The good news is our baby didn't die although, he came close, and within less than 24 hours Cruz can go potty on his own;). Which indicates the infection started in Cincinnati, and if a CT Scan was performed the abscess would have been caught sooner.

And look at him now just weeks after having that surgery redone at Seattle Children's Hospital. A beautiful healthy boy! We still have lots of challenges ahead, but with God, family, and friend's we are doing just that, moving ahead. So I share our story because God is good, God is faithful, and I don't want to hold onto resentment, or bitterness. I want to rejoice in the fact that Cruz is still with us. I want
to give back. So I decided to make blankets to donate to the hospital in Cincinnati, and Seattle Children's hospital. I will also be selling these blankets in my etsy store. So for every blanket I sale I will be donating $2.00 to the Anal Rectal Malformation program at Seattle Children's Hospital. Why blankets? If you look back at all the pictures of Cruz in the hospital he has a white blanket, he calls it his Snug'Mo. That blanket comforted Cruz when I had to leave him for short periods of time, and if we can help comfort another child we are doing are part to give back. I'm being Cruz voice by making these blankets, the mom that did not want to be the know it all RN now has a voice for Cruz:).

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