We are home. Sam is doing great. I hooked up his TPN (nutrition) by myself for the first time, with the guidance of a nurse specialized with pediatric home infusion. Sean was super overwhelmed with the whole process, as I was after my first teaching.
When everyone kept telling me at the hospital, if I could do a trach, I could do a PICC line, I thought, very try true, at first. The more I processed it all, it wasn’t about the ‘if’, it was about the ‘and’. I realized I was overwhelmed with the ‘and’…a trach AND a PICC line. They were right though, I can do it. With time, it will get easier.
Depending on the day or even moment, we are likely thankful for different things. A friend once told me, her mom taught her to say three things she is thankful for everyday. Yesterday I was thankful for the playful bickering between my family, PICC lines, and my home. I could go on and on about many more things I am thankful for, but I think that summed up the things at that time.
I am overwhelmed with gratitude this Thanksgiving. I hope no matter was you are going through, you can find something to be thankful for.
Today I am thankful for home care night nursing, my faith, and a good cup of coffee in a glass mug. What are your three things today or right now?
From my family to yours, I hope you have a happy, healthy, and thankful Thanksgiving.
Sam will have an endoscopy and bronchoscopy this afternoon. This procedure was planned to be outpatient at another location before Sam was hospitalized. The only fact we know right now, is that his ENT (ear, nose, and throat) will be there to do the bronchoscopy. We don’t know yet if another pediatric GI (tummy) doctor will do the endoscopy or his GI doctor. I’m hoping and praying his GI doctor will be able to be in on the procedure and his surgeon, as this was the original plan. There isn’t a GI doctor we don’t know here, and I’m confident in all of their abilities, and there’s comfort in having the one who knows him best in the OR (operating room) with him.
Sam is doing really well and I’m trying to keep him as occupied as possible. We are very thankful for Child Life services. He has way too much iPad time when we are here, but I have to let that go and am very thankful for it. We just might have to do some iPad weaning when we get home.
I had my second PICC line training and am feeling much better about that. When the trainer told me the pump and his TPN (nutrition) will all go into a backpack Sam will wear, she…made…my…year. I was envisioning we would have to follow Sam around the house with an IV pole. Imagine my concern with that and the combination of the Energizer Bunny and the Tasmanian devil. We don’t get that luxury while we’re in the hospital, but boy am I thankful for it when we go home!
It sounds like they are working on getting his TPN down to twelve hours a day. Once he’s stable on the twelve hours for a couple of days, we can break out of jail! I’m hoping and praying this will be before Thanksgiving. High hopes, low expectations.
Prayers for a miracle that all of Sam’s doctors will be able to be at the procedure today. Prayers for wisdom and discernment for whoever is in the OR with him. Prayers we will make it out of here before Thanksgiving!
Sam’s PICC line procedure went well, as we expected it would. He recovered great.
He’s been doing really well, but these four white walls get very boring, very fast for a curious, busy little boy. When the doctors ask what Sam is like when he’s healthy, I tell them he’s a combination of the Energizer Bunny and the Tasmanian devil. They always think that’s funny, but I’m actually not kidding. He’s not quite there yet, but we’re getting really close.
We love when Music Therapy comes and when Child Life brings new toys or other things to try keep Sam busy. We also improvise a lot, like playing in the sink for a while, coloring with crayons on the crib sheet, making a fort with the crib, ‘taping’ the walls with med tape, etc.
We’ll be stuck here until I’m done with the PICC line teaching and they get his TPN (nutrition) figured out. I had my first teaching today and will have another one on Sunday. We’ll be out on Monday, but have to go to St. Paul for his procedure that was scheduled a while ago. Then hopefully home Monday night!
That was the plan until it got changed again. Ugg. After that plan changed and my PICC line teaching this morning, I had a moment. Sometimes you just need a good cry. The bad news of having to stay longer and being overwhelmed with going home with a PICC line came crashing on my heart all at once.
In between the moments a friend sent me this.
AS YOU LOOK at the day before you, you see a twisted, complicated path, with branches going off in all directions. You wonder how you can possibly find your way through that maze. Then you remember the One who is with you always, holding you by your right hand. You recall My promise to guide you with My counsel, and you begin to relax. As you look again at the path ahead, you notice that a peaceful fog has settled over it, obscuring your view. You can see only a few steps in front of you, so you turn your attention more fully to Me and begin to enjoy My Presence.
The fog is a protection for you, calling you back into the present moment. Although I inhabit all of space and time, you can communicate with Me only here and now. Someday the fog will no longer be necessary, for you will have learned to keep your focus on Me and on the path just ahead of you.
Yet I am always with you; you hold me by my right hand. You guide me with your counsel, and afterward you will take me into glory. —PSALM 73:23–24
Show me your ways, O LORD, teach me your paths; guide me in your truth and teach me, for you are God my Savior, and my hope is in you all day long. —PSALM 25:4–5
Now we see but a poor reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known. —1 CORINTHIANS 13:12
Text From a Friend
The floodgates of tears came crashing after reading that. It was exactly what I needed in that exact moment. God continues to sustain me. It’s hard for me not to bring up my faith in these moments, because that is where all of my strength comes from.
The PICC line teaching felt like a lot. The nurses keep telling me if you can do a trach, you can do a PICC line. Very true. I still have another teaching and am incredibly thankful for home care nursing. I’m hoping, and guessing, I’ll feel better after another teaching. I got this!
The new plan is to go from here to the St. Paul campus for Sam’s endoscopy with his GI doctor and surgeon, then a bronchoscopy with his ENT. We have to stay a few nights in St. Paul until the pharmacy gets his TPN (nutrition) figured out for at home. Bummer. They tried to switch the procedure on Monday to Minneapolis, but couldn’t find any open OR (operating room) times.
Every time I have a minute to write, the plan changes! And now another new plan. They were able to get an OR time here so we will not have to transfer to St.Paul!!! Although we will need to be here for four to six more days for them to figure out his TPN (nutrition), not having to transfer to another hospital was the best news!!!
Prayers the plan will not change unless it involves us going home sooner. Prayers they can get his TPN figured out soon. Prayers for continued wisdom and discernment for Sam’s doctors. Prayers for healing for Sam’s gut. Continued prayers for peace, comfort, and strength for us.
Unfortunately, Sam’s feeds were unsuccessful so he will be getting a PICC line this morning for nutrition. We are going on almost two weeks without good nutrition. This is the next best step. Although we’ll be going home with the PICC, it will help us get home a lot sooner.
He had a test (small bowel follow through) a few days ago and it showed reflux into his esophagus, which shouldn’t be happening with the surgery (Esophagogastric Disconnection) he had back in 2020.
The hope is that his little belly just needs a little more rest. If that’s not the case, then he’ll need surgery. He just needs more gut rest.
Prayers for the PICC line procedure to go well. Prayers for the anesthesiologist and others in the operating room. Prayers Sam’s belly only needs more time to rest. Continued prayers for Sam’s doctors to have wisdom and discernment in the decisions they make for him. Prayers for peace and comfort for me in the hospital and my family at home, who are absolute rock stars.
Sam woke up ‘talking’ for the first time in almost two weeks. It was the medicine this mama needed!
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!
…we have a good plan in place. Here is an extremely summarized version of the latest.
They didn’t find anything on the endoscopy. Based off Sam’s symptoms, and stopping and starting his feeds, they have narrowed down the problem to his feeds. I’ll spare you all of the medical jargon and Sam’s anatomy talk.
They will rest his bowels for the next day or so and very slowly introduce feeds. If the feeds go south again, they will do another endoscopy through his j-tube (feeding tube).
Otherwise, it may be Sam’s little gut needs more time, which means, we would be able to go home, but with a PICC line to make up for lost nutrition. Sigh. Okay, time for that good olé self talk.
The PICC line would only be temporary and we would be able to go home, where both Sam and I need to be.
On a good note, Sam had an overall good day. His strength and determination never ceases to amaze me.