I’m going to spare you the many details of the last few days. Sam did have his dilation, and again, it was needed. Since then, there have been new reasons to keep everyone on their toes around here. I’ve had more than a few doctors and specialists tell me, they were pretty worried yesterday.
Today was a better day. Period. End of sentence.
Pray they will be able to figure out the source of the bleeding, or let’s believe it will stop all together. Pray for Sam to poop. 💩 Pray for his blood pressure. Pray for everyone who is on Sam’s care team and that they will all be able to make it to his Care Conference they are working on setting up.
Enough about that.
Right now, I am thankful for…
…Sam having a better day.
…doctors who lose sleep over my son.
…nurses who advocate for my son.
…being able to see my daughter yesterday.
…a family who continues to support us in so many different ways.
…being able to see my husband today.
…friends, who I know I can lean on.
…Physical Therapy, Occupational Therapy, and Music Therspy in the hospital.
…the Ronald McDonald House Charity.
…all of you who continue to pray for Sam and the rest of my family.
On top of everything else going on, Sam developed a cold. Poor buddy can’t catch a break. It has been a rough few days. Who am I kidding, it’s been a rough thirty-two days. To be on the safe side, they did a nasal swab and trach culture. The only infection that showed is rhinovirus, aka, the common cold. Big deal, you might be thinking. At least that’s what I thought/think when my other kids caught/catch a cold.
For Sam, the common cold is rough. He’s miserable. We are constantly suctioning his trach (breathing tube). He retches a lot more because it’s hard for him to control all the extra secretions. He is also at a much greater risk for aspiration, pneumonia, and/or bronchitis. That’s where the hard work comes in for us. With continuous monitoring and safe suctioning, we can prevent these infections. Thankfully, he usually gets through the cold without complications, but it’s not easy.
Sam’s next dilation is scheduled for tomorrow at 2:45pm. As of now, he’s still scheduled. The doctors today, said if things get worse, he will have to get rescheduled. Pray for a quiet, restful night, for the cold to be short lived, and for him to be healthy enough for surgery.
Unfortunately, we are still suctioning blood from his trach. In the morning, ENT will do another bronchoscopy. This way, if they find anything, they can take care of it in surgery tomorrow afternoon.
On a good note, he is up to sixteen milliliters per hour with his feeds and we have not had to stop them!
Although this is hard, and trust me, I have my moments, for the most part, I am okay. Even in all this chaos, I am at peace. I truly believe, the more you lean on and trust in Him, the more you will feel an overwhelming peace even in the chaos.
Sam’s PICC line took an hour to an hour and half to put in. They highly suggest parents are not in the room for this. Good suggestion. I don’t leave his room much. It’s a lot harder to leave now that he’s older. I know I didn’t leave a lot when we were “living” here, but I felt more comfortable leaving back then. Thankfully, this place is not home to him anymore. Now he gets so afraid, as he should. Most of these people, although great, are strangers to him.
I decided to stroll down to the third floor, where RMH is. I walk through “the house” and start recollecting. I notice some of the changes. I see it’s a beautiful Minnesota fall day so I step out onto the patio. I’m sure my body is screaming for vitamin D at this point.
As I sit on this small patio (picture above is the view from the Minneapolis RMH Campus), the memories of this place come flooding back to me. The sounds of the city going on with its day. Once in a while, a helicopter blares above or the sirens of an ambulance race by. I close my eyes and let the warm sun beat on my face. It feels good. The memories of the beginning of Sam’s life imbedded in my heart, good and bad, begin vividly racing in my mind.
There are so many memories, and some create an extra pang in my heart. I am beyond grateful for this charity. It’s one of those things, you don’t really understand the impact of what they do, until you or someone close to you gets thrown into a situation they never thought possible.
During our extended stay, RMH was a game changer for me. For over seven months, I had a free home cooked meal, a bed when I asked for one, a friendly smile to greet me each time I walked in, a place to get away for a moment without the feeling of being in a hospital, and a nice, warm shower, when it was often well overdue.
As I rarely left the hospital, having this, home away from home, only a few steps away from Sam, made an incredibly difficult time easier, both financially and emotionally.
Some of my most emotional moments were spent at RMH, like sitting, in the warm sun, on the balcony of RMH. Or when I saw my mom, dad, and sister for the first time after they had jumped in their car from Florida on a Thursday afternoon, and made it to Minnesota by a Saturday evening. Grandpa Larry cannot deny the speeding involved.
Here a few more moments from RMH, that will forever be in my heart.
Just like any typical kid during a Minnesota summer, my friend’s two sons wanted to have a lemonade stand. At this point, Sam had been in the hospital for about a month. Unbeknownst to her, the two boys had other plans. Their intentions didn’t entail earning money for themselves. The stories they heard from their mom about how RMH had made a major impact on our family, struck a cord in their little hearts. The fine print on the sign they made reads, “all Money goes to ronald mcDonald house!”. They raised $55!! Precious.
One morning I was sitting in RMH beginning a new journal entry for Sam’s CaringBridge. I ventured to the microwave to warm-up my coffee. I was already a bit emotional. As I was waiting at the microwave, I read the back of an RMH volunteer’s shirt.
“This is the house that opens its arms, that feels like home, that embraces the children, that comforts the parents. This is the house where families meet, to eat and sleep, to find their strengths and dry their tears, to look forward with hope to better years.”
Ronald McDonald House Charities
I proceeded to tell the RMH volunteer how true the back of her shirt was. I couldn’t stop the tears from flowing. She didn’t say anything, just gave me a hug. I tried to assure her, my tears, were happy ones, because I was going to take my son home soon.
I never understood the significance of RMH until life threw a curveball at our family. We will be forever grateful for the impact RMH was and is to us today. Since the beginning of Sam’s life, RMH has been a saving grace for me.
Giving to this charity can be as easy as saving your pop tabs. Beer tabs work too. ; ) Each year, the collection we turn in to RMH gets bigger and bigger. People collect them and give them to me. Once a year, I bring the stash to RMH. They make almost $20,000 a year in donations from collecting pop tabs! It’s such a simple thing to do. If you want to start collecting, I would be happy to take the stash off your hands!
Ever since Sam has started his journey here, we have participated in the RMH Family Walk. This year the walk is virtual TOMORROW October 31st! Covid, ugh. Although, we can’t walk, I was able to set up a team last minute and would love your support! I planned to set this up a while ago, but I have been a little preoccupied. 🤣 Please consider donating to this charity that helps families during unimaginable times.
On Monday night we strolled Sam down to surgery again. They discovered his esophagus had narrowed down quite a bit since the last dilation done, only about a week prior. It wasn’t as strictured as the the first time, but enough to have it difficult for things to pass through. They dilated again.
He rested overnight and started feeds the next day. He’s on day two of feeds. The feeds were going well, up until later this evening. We decided not go up on his feeds at the designated time, and try keep them running at the slow rate they are. He’s sleeping well now, without any symptoms. Let’s hope, pray, and believe he can continue to go up on feeds without having to stop them.
Sam’s Surgeon has decided to schedule another endoscopy for early next week. He will take a look and dilate his esophagus again if needed. For whatever reason, Sam’s esophagus thinks it needs to close up post surgeries. We may have to continue this process, which is not new to Sam, but not fun for him either. Pray his esophagus stays open and will need minimal dilations.
Home. I’ve decided not to bring it up anymore. Sam has a great team, who has his best interest at heart. Home will happen when it’s best for Sam.
Again, I wish I could tell you we are on the path to going home.
I wish I could tell you Sam’s feeds went well when we restarted them.
His feeds are stopped again and another plan will be made tomorrow.
Our answer with an easy fix, didn’t turn out so well. The stricture (narrowing) of his esophagus is not the only issue. Sigh. Back to the drawing board.
I can tell you, Sam is otherwise doing really well. As soon as we stopped the feeds, he seemed to feel better quickly.
He’s like a caged animal right now. We do our best to keep him entertained. Thankfully, we can take wagon and stroller rides up and down the halls and we switch out the toys every couple of days. Bottom line, we, need, to, go, home. It’s feels crazy to think we did this for over seven months.
I’ve mentally prepared myself, the PICC line will be coming home. I can still hope it won’t. More than anything, I hope they/we can figure out why he’s not tolerating his feeds.
While I know you are keeping Sam in your prayers, please pray for our other three kids too. Our love for them is no different than our love for Sam.
Sam needed a dilation. This is what we were all hoping for and the best case scenario. His esophagus was pretty much shut. A thing Sam likes to do after surgeries and in general. They didn’t dilate all the way being only three weeks post-op. Later, when he heals more, if he needs another one, we can come back for that. And that, is a one day ordeal, which is something we are accustomed to in our world.
He will rest tonight and we will slowly introduce feeds tomorrow. If all goes well, we will be here a bit longer, but will get to leave the PICC line here. Please, let us leave the PICC line here, Lord. Being on “PICC line watch” is really hard and especially hard with very busy little boy.
We also figured out why the blood is coming from his trach (breathing tube)! This morning, before surgery, ENT did a bronchoscopy. The blood is from suctioning past his breathing tube, something that shouldn’t be done too much. His airway is irritated, but it will heal.
Believing for no more surprises and the feeds to go well.
Thank you again for your prayers! Keep em’ coming!
Sam’s day has been quite rough. Man, what a roller coaster. Just when we all think he’s turning the corner, things take a sharp turn in the wrong direction.
Some symptoms are new and others have been off and on since he’s been here. This is nothing. It’s just a fluke.He will get through this.
Please pray for my little fighter. Pray his blood pressure can be controlled. Pray for no more red blood coming from his trach (breathing tube). Pray for less secretions. Pray his lungs are clear on the x-ray results. Pray for no more throwing up. Pray for his heart rate to come down. Pray for his medical team. Pray for his momma, daddy, sister, and brothers too. Pray they can get things figured out and we can go home. Pray for no more sharp turns.