Trisomy 21 – Superman Sam's Survival Kit

High Hopes, Low Expectations

Published on March 22, 2023March 22, 2023 by Jamie Grant4 Comments

When it comes to certain things in life, I think it’s okay to have high hopes and low expectations. In my opinion, high hopes with high expectations, only leads to disappointment.

I generally try live by this motto, but recently I did not.

Sam was supposed to start school today. He hasn’t been in school since October. I think I was looking forward to him starting school the most. When he came down with what we think is a stomach bug yesterday, I was selfishly pretty bummed. When I shared my feelings with Sam’s dietitian, her response was,

Not selfish in my mind. You want this for Sam and it was also going to be a break for you.

She was right. Clearly in this situation, my hopes and expectations were high. Give yourself grace.

We’re still home and hoping to keep it that way. Although, we are very done with this PICC line, it might just be the thing that keeps Sam from a hospital stay.

Before he started feeling sick, he was on track to be done with the TPN (food/nutrition through his bloodstream) by the end of April, which would mean no more PICC line. His g-tube feedings have been going really well. We are hoping this doesn’t set him too far back and also know he likes to throw curveballs in the mix sometimes.

The prayer is that this is a stomach bug and not an intolerance to his feedings. As a of now, we are confident he has a stomach bug and hopefully he’ll kick it quickly.

On another note, we were able to take a trip few weeks ago. If you remember from our last trip, we had some memories to last a lifetime. On our way home, our flight was canceled. We weren’t able to get on another flight home until the next day. From that, we were each given vouchers from the airline. Abby had a soccer tournament in Florida so we thought we would use those vouchers and try our luck at another trip.

I say trip because when you are traveling with young kids or someone with special needs, it’s a trip, not a vacation. ; ) Although it was another eventful trip, we had a fabulous time.

Here’s a very short version.

On the way there, our flight was delayed two hours, Sam peed through his sweatpants. We had to leave his wet shirt on because he was still hooked up to his PICC line. He pooped right before we boarded the plane, which held the plane up a little longer. Thankfully, we hadn’t boarded yet. He threw his suction machine (basically his lifeline) into the ocean. Red tide hit our beaches, but we had two fabulous days on the beach. Abby sprained her ankle in her second game. Our flight home was delayed an hour and then we sat on the runway for almost another hour. When we got home, we were locked out of our house.

BUT what we remember was absolutely perfect weather and a wonderful time with family and friends. We kept our hopes high and our expectations low. We had some bumps along the way, but we expected some of those and rolled with the punches.

Sam might not be the easiest guy to travel with, let alone leave the house with, but we want him to have the best quality of life and we have chosen to do what we can to give him that and not hold our other kids back despite his complexities.

Prayers Sam can kick this stomach bug quickly and go back to school where he makes people better!

Oh, and Happiest World Down Syndrome Day!

Sam Strong

Faith Over Fear

Starting Feeds

Published on January 13, 2023January 13, 2023 by Jamie Grant8 Comments

Besides his meds and water, Sam has not had anything in his stomach for over two months. I think it’s safe to say, his gut has had rest. We are going to introduce feeds into his g-tube (feeding tube) very soon. It will be a very, very small amount, and we will slowly add more as he tolerates it. We are nervous and excited.

Sam has otherwise been doing great! “Eating” through his bloodstream doesn’t seem to phase him much. He’s not in school yet, but he’s been able to go to occupational therapy and speech comes to our house once a week. He keeps himself busy organizing and being on his IPad more than he probably should be.

PICC line dressing changes are getting easier each week. He seems to fight less and knows the worst part is when his infusion nurse has to take off the old dressing. Getting his TPN (nutrition) started has become a part of our evening routine and it feels normal. I will be happy though when the PICC line is gone. It’s not the fastest process in the world and let’s face it, not normal.

Please pray Sam tolerates his feeds and he will not need the surgery his surgeon talked about before Christmas.

I hope you and your family had a very Merry Christmas and Happy New Year! I know I got my Christmas wish and very thankful for it.

Sam Strong

Faith Over Fear

PICC Update

Published on December 22, 2022 by Jamie Grant7 Comments

Sam has three cases managers. True story. He has one through our insurance, the state, and our home care nursing company. His insurance case manager gave me a couple of tips on how to prime (get ready) his TPN (nutrition). I’m sure it’s a combination of what I’ve been taught the past month and her tips, but I can can tell you I am having more success with no air in the line (tubing). I am comfortable with all things PICC line, but have a healthy fear of the sterile process.

What is a PICC line? Everyone knows what a PICC line is, right?! Now that we’ve been home for a bit, and have people asking more questions, I realize not everyone knows. News flash. I didn’t know what a PICC line was six years ago either.

Essentially, a PICC line is a small tube placed in a view on an upper arm close to the heart. This is a way for Sam to be able to get his minimum nutrition requirements without tube feeding. TPN is basically nutrition through your blood stream. One hundred percent of Sam’s nutrition is usually given through his feeding tube in his stomach. Because that was not going well for as long as it was, and we learned his little tummy was so irritated, a PICC line with TPN was the last resort.

We had his surgery consult. I wasn’t surprised by anything I heard. I’ve lived in this medical world long enough. The plan will be to try tube feedings after Christmas. If he’s not tolerating his feeds, they will do ANOTHER surgery in February or March. How many surgeries can one little boy’s body go through?!?!

Sam’s surgeon assured me the surgery would not be as invasive as many of his other surgeries. When I asked how long the hospital stay would be, he replied, “Usually three to five days.” He followed that with a slight chuckle. We both know Sam follows his own rules. I backed that up with, “We are going to shoot for three days, okay, maybe five.” And then I told him, “It’s not going to matter. Sam won’t need the surgery because he’s going to tolerate his feeds.”

All I want for Christmas is to be home with my family. The PICC line is going well. I suggested we don’t rock the boat and try feeds after Christmas. Sam’s surgeon agreed this was a ‘very reasonable’ plan. Spending another holiday, especially another Christmas, in the hospital is not on my bucket list. Although, Christmas is only a day. As long as we’re all together, the day we celebrate doesn’t matter so much, but being in the hospital on Christmas in no fun for anyone.

Sam is doing great. PICC line dressing changes are back to once a week and his little arm is no longer a mess. He definitely knows the infusion nurse’s voice when she walks in the door on Monday mornings. We all laughed when he gave her the side eye as she walked up the stairs this week. You can’t blame him for giving a side eye when he’s well aware I will have to sit on him and his home care nurse will have to hold his PICC line arm still while the infusion nurse changes his dressing for about fifteen to twenty minutes. He does a great job overall. His infusion nurse is always so impressed with how well he does. He’s a trooper and incredibly forgiving.

Sam’s not in school still, but being bored does seem to be a part of his personality. He loves to “organize”. Him and I have very different views on how to organize.

I was pretty proud of him when he set up the little table situation all on his own with some stools pushed together and the the blanket over them.

Silly Sam. The wrap around his head is suppose to be around his arm to protect his PICC line, but he likes it better as a hat.

This is a hat, not the dressing to protect my arm.

Sam’s biopsy results came back all good! As I suspected, no news was good news.

Praying you don’t hear from me until after the holidays and when you do it will be because Sam’s tube feedings are going well!

Wishing you and your family a Merry Christmas and Happy New Year!

We Stayed Home

Published on October 11, 2022 by Jamie GrantLeave a comment

A few weeks ago, we were very close to a hospital stay. Our normally, very busy little boy was laid up on the couch, miserable for a week. He was blasted with all the hardcore stuff we can give at home and needed some oxygen support at night for a few days.

What was the illness that almost landed him a hospital stay you ask? It was likely a cold. That’s right, an illness I wouldn’t blink an eye for with my other kids. We are so thankful we didn’t land ourselves in the hospital. It’s no fun Sam or any of us.

Sam going to school or not, has been an on going discussion in our house. If it were up to Sean, Sam wouldn’t go to school at all. He thinks every time Sam goes to school, he ends up in the hospital. There is some truth to that, but there have been plenty of times we’ve been able to keep him home. Mind you, keeping him home and out of the hospital, is not an easy feat. I see Sean’s point, and also don’t want to keep him in a bubble.

I have to admit, during this last illness, keeping Sam out school crossed my mind a few times. When a common cold debilitates your child for a week, and keeps him out of school for two weeks, contemplating sending him to school or not becomes a thing. Faith over fear.

Until Sam’s doctors tell us to keep him out of school, we will continue to send him. I believe we were designed for human contact. Keeping Sam out of school might mean I am stealing from him what he can give to others. And Sam makes people better.

No More Surprises

Published on May 28, 2022 by Jamie Grant4 Comments

Thankfully we did not have anymore big surprises and we are home!!!!!

More to come, but wanted to let everyone know Sam is out of the hospital, doing well, and we made it home.

Sam Strong!

Faith Over Fear!

Another Complication

Published on May 23, 2022 by Jamie Grant5 Comments

Sam has intussusception again. I don’t have the energy to go into details of his day yesterday, but if you could guess, it wasn’t great.

We had some hope during the day yesterday we wouldn’t have to change our flight, but by the evening, we knew we would be staying longer. Hopefully not too much longer.

We’ll find out soon if he’ll need surgery or not.

I’m not really sure what to ask prayer for. Whatever will make Sam feel better the quickest and get us home the soonest. And so much more.

Sam Strong!

Faith Over Fear!

We Have an Answer!!!!!

Published on May 22, 2022 by Jamie Grant7 Comments

X-rays showed Sam’s j-tube (the part of his feeding tube that is threaded into his small intestines) is retracted and coiled up into his stomach. As you might imagine, this is very painful. Poor buddy. No wonder why he’s in so much pain and throws up every fifteen to thirty minutes.

At home, radiology does the feeding tube procedure, but it sounds like surgery is the specialty who will do it here. Pray for a quick and smooth procedure tomorrow morning. He gets his feeding tube changed every two to three months and it’s a pretty painful experience for him. This procedure is why he has so much PTSD when he sees an x-ray table. He just had it changed two weeks ago. Poor guy. Hopefully the little bit of morphine he’s on will help.

I feel terrible for him, but this is literally the best possible, fixable answer. This poor guy can barely catch a break. He is the strongest, toughest little boy.

Pray both Sam and I will get some restful sleep tonight and this will be the only complication. We want to hopefully get out of here tomorrow and be able to catch our flight home on Tuesday!

Sam Strong!

Faith Over Fear!

Airway Surgery

Published on May 20, 2022May 20, 2022 by Jamie Grant8 Comments

Sam is out of surgery and doing well. Pray for a smooth recovery and NO retching. No one knows for sure, but it’s highly likely Sam’s retching was what caused the previous surgeries to fail.

They told us surgery would be an hour, to an hour and a half. We waited for two. This kind of extra waiting is always hard. A half hour can feel like it does to a toddler, which feels really, really long. Breathe.

We weren’t planning on it, but we will be staying overnight so they can keep a close eye on him. Pray Sam will behave himself so we can go back to the hotel tomorrow.

Now we wait some more. Typically, patients come back six to eight weeks later to find out if the surgery worked or not. Sam’s new ENT in Minnesota trained directly under the ENT who did Sam’s surgery in Ohio. Thankfully, we will get to do the follow-up at home. Traveling with Sam is an experience we don’t want to do often.

We will wait patiently until July eighth to find out the good news.

Sam Strong!

Faith Over Fear!

Less Than One Week!

Published on May 14, 2022 by Jamie Grant6 Comments

We are less than one week away from surgery!!!! Sam is doing great! He can’t be school, but we are doing our best to keep him busy. With the help of his teacher, his nurses are doing a great job of bringing some aspects of school home. Have I ever mentioned how thankful we are for our home care nurses? Incredibly. And, of course, the beautiful weather helps. Sam LOVES to be outside.

I am so excited and nervous all in one for this surgery. It’s THE surgery that’s been in the making for over five years. It’s been done twice unsuccessfully here, but never at the place we were referred to a few years ago. We’ve had it planned in Cincinnati twice, but didn’t make it due to Sam being Sam. He was sick the first time then needed a major surgery the second time, because essentially, his organs were moving up into his chest which ended up being an over two month stay in the hospital for him. We are ready for this surgery!!!!!

If the surgery works, it would mean eventually, Sam could be decanulated (get rid of trach/breathing tube). Game changer. It makes sense why all of Sam’s doctors wanted to keep him in a bubble until this surgery. If you know me, staying in a bubble is not something I do not do very well, but I have been a good girl.

Of course, Sam had to ruffle everyone’s feathers a little bit. Long story short, Sam’s pediatrician was concerned about a medicine (steroid) he has been on for the intussusception. There is a low risk it will be a problem, but steroids can hinder the healing process. The surgeon from Cincinnati called me to discuss the situation and still feels because of Sam’s complicated history, already having to cancel the surgery twice, and the low risk factor, we should still proceed with surgery, but wanted us to be aware and not have this conversation the day of surgery. Your the expert! What would you do if it was your child?!?! I don’t like to ask doctors this question, but in these situations, I usually do. Everyone agreed, we have Sam in a healthy spot so let’s do it!

So far, Sam has stayed healthy. Prayers for continued health, flawless travel, and a successful surgery for Sam.

Sam Strong!

Faith Over Fear!

Home Again

Published on April 27, 2022 by Jamie Grant3 Comments

This time, seven days later, we were able to come home. Home sweet home. I was really surprised when the docs rounded that morning and said if things went well during the day, we could go home that evening. Generally, when Sam is inpatient, they make him be successful on formula for at least a day or two before we can go home. He was only on a mixture of half Pedialyte, half formula at this point. They were planning to start full formula later that morning. What?! Do I feel comfortable going home?! Absolutely! Isn’t this why we have home care nursing?!?! Before I knew going home was even on the table, I talked to Sam’s hospital nurse at shift change that morning to let her know I was hoping to leave for a bit to go have an early dinner with my husband and celebrate our anniversary. She assured me they would have someone available to sit with Sam later. We didn’t get to have dinner, but our gift of coming home was far better.

Grateful to a friend for the gift of pressed coffee and heavy cream.

Again, Sam is not back to his normal feeds, but we’ll get there. Poor kid has lost over five pounds in the last month and he doesn’t have any fat to spare!

The prayer now is that the intussusception does not recur. It’s unlikely. We will focus on that. I asked the hospitalist what the threshold to bringing Sam in if he has similar symptoms again. He said, ”very, very low. Intussusception can be very scary…” I’m not sure what he said after that, I only know we better not hesitate if he shows any symptoms. It’s not going to be an issue, so it doesn’t matter.

Because of this second recent hospitalization, more than one of Sam’s docs highly recommended he stay out of school until after his surgery in Cincinnati. Bummer, but I get it. His pulmonologist was planning to have him quarantine two weeks before the surgery, so what’s two more weeks?

As we keep Sam in somewhat of bubble for the next month, pray he doesn’t catch anything. Like his gastroenterologist said, ”Let’s just get him to Cincinnati so he can finally have this surgery!” Agreed!

Thank you for your continued thoughts and prayers for Sam and our family.

Sam Strong!

Faith Over Fear!