Overall, Sam is doing really well. He’s been rid of the PICC line since June! His g-tube feedings are running eighteen hours a day, which is kind of a bummer, BUT way better than having a PICC line.
He’s been happy and healthy. Healthy.
Summer is usually good to Sam. He generally stays out of the hospital and virus free. We love summer. He loves summer.
We have had two doctors tell us, in order for Sam to get his trach (breathing tube) out, he needs to be successful in school for a couple of months. For them, that means stay out of the hospital and off all the hard core treatments when he does get sick. You’ve got this buddy!
He recently had his lab appointment for his new specialty, endocrinology. The poor kid has so much PTSD. He knows as soon as we go through the double doors something bad is going to happen. He did great though. After the poke, he was fine. They drew labs every 15 minutes for an hour. Results will take a couple weeks. As always, we will patiently wait and hope for whatever is best for Sam.
For now, we will continue to enjoy what we have left of this good, busy, beautiful summer. And pray he can start school and stay in school.
We all need a good cry once in a while. It’s medicine for the soul.
I wish I could tell you no news is good news and things have gone fabulous since Sam’s surgery.
I want to tell you Sam doesn’t have a PICC line anymore and his g-tube (feeding tube) feeds have gone flawlessly.
As you’ve already probably guessed neither are the case.
In the past six weeks, this poor kid has put under anesthesia three times, one being an esophageal dilation, and two other times because his PICC line got misplaced so he needed a new one. He’s fought illnesses off and on several times. He seems to get to a certain point on feeds and then can’t go any further. He’s had all the tests imaginable to try figure out what’s going on.
We were hopeful he would be able to make it to school for the last month, but he only made it a couple of days.
It has felt like the hard days outweigh the not as hard.
Last week, after a really hard morning by myself without a nurse, with a forty pound little boy who developmentally doesn’t get the concept of sitting still on continuous fluids until he could get his PICC line replaced and poop everywhere, I felt like I was hanging on by a thread. Since Sam’s had this PICC line, we’ve had to cut his shirt off more than once because of poop everywhere. In the moment, getting scissors was not even an option.
You know when everything compiles and you feel so overwhelmed, you feel almost frozen? I slightly panicked not knowing what to do. I stopped and said out loud, “Lord, I don’t even know where to start right now or what to do. Please walk me through this. Please keep his line free from any poop or infection!” I’m not really even sure how I did it, but I did. Thank you, Lord.
After I finally got things mostly cleaned up, I got Sam on his iPad and just sat on the couch next to him feeling overwhelmed and exhausted not just from that morning, but from all the things. Shortly after, my friend and her daughter walked in the door. As my friend walked up the stairs, just seeing her, I completely lost it, blubbering like a little baby.
We hadn’t talked in the past week, so she had no idea about all the tests, Sam getting really sick AGAIN and needing another PICC line AGAIN. “On no, what is going on?!”, she exclaimed. She sat down next to me, hugged me, and let me cry. I composed myself and gave her the latest updates. She knew all I really needed was a good cry. I felt much better after.
Currently, Sam is doing great. We are back to square one on feeds through his g-tube, but so far so good. He has added a new specialist to his already lengthy list. We are thankful for entire week of no surprises.
I have had a few people, okay several, call us crazy since we recently added a new family member to our household. Meet Hank. I’m forty-three years old and have never had a dog before, let alone a puppy. I’ve been told puppies are a lot of work. I don’t know if I have a skewed perspective because of Sam, we got a good one, or both, but Hank has not been all that much extra work and has been the best addition to our family.
Here’s to the good cry and replenishing the soul. We all need it sometimes. As long as we are able to pick ourselves up and keep moving forward, the good cry, once in a while will only make us stronger.