More Hurdles
It’s been eventful. The x-rays on Sam’s hips I asked for prayer for showed no change from the x-rays he had in January. Whew. Even though the x-rays showed no change, they were really concerned about the limp he had developed after being sick. Hmmm.
When we saw his orthopedic doctor a week after his x-rays, his limp was gone so she was not concerned anymore. She was convinced he had Transient Synovitis. What the heck is that?! Apparently it’s a very common cause of hip swelling and limping in kids after a viral infection. I have four kids and this is the first I’ve heard of it.
The first line of defense is ibuprofen to help with the swelling. Of course, Sam can’t have ibuprofen. Ibuprofen is on his allergy list because of his chronic kidney disease diagnosis. In this case, his nephrologist okayed the seven day course of ibuprofen. I realized/remembered a few days in, you’re not suppose to have ibuprofen before surgery. Shoot! His procedure to see if his esophagus was strictured (narrow) was only a few days away. Oops. So many things to remember with these kind of kids! We stopped the ibuprofen until after his procedure.
His procedure went well. Unfortunately, his little esophagus was very strictured. I was told I must feel validated. I’m not so sure those were my feelings, but I am glad the procedure gave Sam relief and I wish it didn’t take a procedure to fix the issue.
The way he bounces back from sedation amazes me. I asked a nurse if this is normal and her response was a quick, definitely not. He walked out of that surgery center like nothing even happened.
He made it to school two days before things went downhill again. Per Sam’s home care nurses, he was greeted with the sweetest welcome back from his classmates, teachers, and many others. He hasn’t seen them since October. They were elated to have him back. Many of the kiddos colored Lego Superman pictures for him and wrote the kindest notes that would make anyone choke back that lump in your throat you can’t control when you feel happiness and sadness all in one.
Our Easter was nice and low key with family. The rest of the week was not so low key. We spent two nights in the hospital. Poor guy was miserable. His little esophagus was very narrow again. It’s only been a week and half since the last one! This poor kid! He had another esophageal dilation and we went home the next day with a happy boy.
There are many missing details, but it is clear Sam will need another surgery to hopefully fix the underlying problem. Something has to be done. Feeding intolerance is an issue. We had been working so hard on trying to get rid of his PICC line. We had made so much progress on his feeds. Now we are back to square one until after his surgery on 4/28. Until then, he will only be on TPN (bloodstream nutrition/food) and be out of school until he has recovered from surgery.
I loved the response I received regarding his recent events from one of Sam’s hospital nurses he had when he was a baby.
Dude definitely loves a good comeback story! The ultimate miracle.ICC Nurse
Another. Major. Surgery. Ugh. As I said, when it comes to minor surgeries/procedures, Sam is a rock star. When it comes to major surgeries, he doesn’t have a very good track record.
This time is going to be different. This time he will not throw any curve balls. This time he will recover quickly. Thank you for believing these things with us. I can’t wait to tell you the good news a few weeks from now.
Sam Strong.
Faith Over Fear.
Hurdles
What we think was a stomach bug, hit Sam hard. He was miserable on the couch for five days. Stomach bugs do that to Sam. If it weren’t for his PICC line, he would have definitely had a hospital stay. We are thankful we were able to stay home.
As he regained strength, we were hopeful he would kick some of the symptoms still lagging. He has been mostly happy this week, but will not swallow, is continuously spitting, and retching a few times a day. All signs seem to point to a strictured esophagus. Sam has had sixty plus esophageal dilations and almost every one that wasn’t already scheduled was a phone call made by me and then a phone call from the surgery scheduler, who we are on a first name basis with, to schedule the procedure to stretch his little esophagus. I’ve been wrong. One time. And one might argue, I wasn’t completely wrong, there was a much bigger problem in that situation.
After many phone calls back and forth, we received one that gave me a sucker punch in the stomach. After Sam’s GI doctor and surgeon discussed things, they think it’s best for Sam to have the surgery that was discussed back in December. But, I thought we would only do that surgery if Sam’s feedings weren’t going well?! He had a stomach bug, not feeding intolerance! And now, we’re fairly positive he needs a dilation! Why are we jumping to the surgery!? Us, along with Sam’s home care nurses had a lot of questions.
All this being said, he has not been able to go back to school yet. Boo.
I felt icky. I don’t want him to have another major surgery. Why more pain and suffering for my sweet, innocent little boy? That afternoon, I felt scared. I felt anxious. I felt sad. I felt worried. I felt mad. I felt frustrated.
That evening, with my brain and my heart in a fog, I went through the motions. I made dinner, cleaned dinner up, started Sam’s TPN, did Sam’s nebs, gave him his evening meds, and drove to and from soccer. Most of these are things I enjoy doing. I appreciate I get these opportunities and am thankful for them. Things were weighing me down. It’s not fair he has to go through all this!
That night, I laid in bed and poured my heart to the Big Man Upstairs. I was reminded of some of His promises. He’s got this. His plans are better than mine. He is for Sam, not against him. The more I was reminded of these promises, the lighter I felt. Surprisingly, I slept very well that night.
We waited the entire day for the phone call to explain things more. I didn’t go through the motions. I wasn’t worried about the phone call that was coming. I felt peaceful. I felt calm. I felt grateful.
When the phone call did come later that afternoon, some of our questions were answered. They said Sam would be scheduled for a dilation (esophagus stretch) next week with his GI doctor and surgeon, and things that didn’t make sense, made more sense now. We are still unsure of some things, but will be able to ask more questions next week.
We were very thankful they were able to schedule the procedure for Monday morning. Prayers everything goes smoothly and more of our questions will be answered.
Without going into a lot of detail, prayers for x-rays Sam is having tomorrow morning on his hips. We feel it is something they are being overly cautious about, which isn’t a bad thing and don’t want to be wrong about our feelings.
These are only hurdles. Hurdles can be jumped over, kicked over, and tripped over, but we can still get back up a keep moving forward. And that is exactly what we will do.
Sam Strong
Faith Over Fear
Prayers Answered
There will be no positive blood culture. Check. Sam will kick this virus quickly. Check. There will be no more seizures. Check. We can continue to manage his fevers. Check. He will be ‘healthy’ enough for surgery tomorrow. Check.
Each specific prayer request was answered. Thank you! They were able to get Sam on the surgery schedule earlier in the day than planned, and we were able to discharge that night, which meant a four day stay. We'll take it!
Adenovirus. What is it you ask? I had quite a few people asking me about this. The reason you've likely never heard of it is because it's not something you'd probably go to the doctor for or bring your kids to the doctor for. It's not a typical test that would be run either. Symptoms are generally mild unless you have a weakened immune system. Sam. For Sam, testing for many viruses is helpful in ruling out a bloodstream infection. If Sam didn't have this PICC line, I'm guessing we would have avoided this hospitalization.
They put his new PICC line in his left arm. We were grateful for this. His poor skin needed a break on his right arm. Sam has always had very sensitive skin. This doesn't pair well when adhesive is needed on your skin for a long period of time. We are hopeful we have figured out his dressing change potion so that we can avoid any skin breakdown this time around. Prayers for no skin breakdown and no new allergic reactions.
I am very thankful for this PICC line and I will be happy to be done with it! His surgeon did his dilation before they placed the new PICC line. He talked again about the surgery he would do if Sam does not tolerate his feedings. Continued prayers Sam will tolerate the max amount of his nutrition through his feeding tube so we can be done with this PICC and avoid another surgery!
Sam Strong.
Feeling better.
Faith Over Fear.
You Can Do Hard Things
Thankfully, Sam rocked Covid. He only had a low grade fever for a day or two. Pretty sure I got it too, but besides a nasty cough and stuffiness, I felt fine.
A lot has happened the last few weeks, but I’ll spare you all the details. Sam’s PICC line has been quite naughty, which has lead to a lot more work on our part.
And now, we are in the hospital again. Ugh.
A few days ago (Super Bowl Sunday), he developed a fever. Not again. We got through the night, but his night nurse said he had a rough night. His infusion nurse nurse apologized before she told us she had to advise us to take him in. Like I said before, we have to be extra cautious with a PICC line because of the risk of a blood infection. I’m so done with this PICC line.
His infusion nurse already drew the necessary blood work while we were still at home. We packed Sam up along with his blood and headed to the ED. After a very long wait, and all the necessary tests, he tested positive for another virus (Adenovirus). Seriously. I thought we might get sent home, but with his labs being a bit off, they wanted to keep him for for a negative blood culture. Then we lost the PICC line in the ED, which meant Sam would have to be poked. &$!#%. Oops, forgive my language.
It’s nice to know we’re still welcomed.
It’s been a couple of rough days for him. He has been having seizures that seem to correlate when his fever spikes. Seizures aren’t new for him and aren’t a concern, but I just feel so bad for him. He has had happy moments in between being miserable. He was very proud of the cookie he frosted for me. Thank you to Child Life for this fun activity.
Happy Valentine’s Day!
He’s on the surgery schedule to get a new PICC line and a dilation for tomorrow. He was scheduled to have a dilation next week so now we won’t have to come back for that. Thank you to his team for making this happen. Vascular Access (PICC line people) need to have a forty-eight hour negative blood culture before they will clear him to get a new line placed. We are all confident it’s the virus that’s causing the fevers and not sepsis.
There are a lot of missed details in this post. The last few weeks have been tougher than our norm. I appreciate the doctors that walk through this journey with us on an emotional level. Sam has a lot of doctors on his team, and many that aren’t on his team, but who know him well. The doctor on call a few weekends ago, encouraged me more than I’m guessing she’ll ever know. Our conversation ended with, “You’ve got this. You can do hard things.” One of the many things that keeps you going as a medical mama.
Prayers for today. There will be no positive blood culture. Sam will kick this virus quickly. There will be no more seizures. We can continue to manage his fevers. He will be ‘healthy’ enough for surgery tomorrow.
Sam Strong
Faith Over Fear
Starting Feeds
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
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.
Time 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.
Time to eat.
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!
Procedures Update
The excitement of breaking out of jail made me forget to update on the procedures Sam had while he was still in the hospital. Obviously, from the last post, he recovered very well.
His GI doctor dilated two different areas of his esophagus. Because Sam’s esophagus is not attached to his stomach, it’s been hard to scope the inside of his tummy. She was able to take his feeding tube out, and although it wasn’t easy, she got the scope through, and was able to take a look. Not surprisingly, his tummy looked rough. She took biopsies. We are still waiting on the results, but generally, no news is good news. Probably too much information, but she also scoped his rectum and everything looked good down under.
His ENT gave the GOOD NEWS that his laryngeal cleft is still repaired and his airway looks good. Or best news. We are on track to work on decanulation (getting his trach out) in the the Spring!!!!!
We are settling at home with a PICC line. Sam is doing great, but his poor skin is a mess. We discovered he’s allergic to the dressing. They are now doing dressing changes every two to three days, instead of weekly, and prescribed him a topical steroid.
The more frequent dressing changes are a drag because three of us have to pin him down for a good ten to fifteen minutes to keep his arm still and sterile. Sam might be a little guy, but he is very strong and flexible. I think the scariest part of a PICC is the the importance of keeping it sterile. The risk of infection is low, if you’re doing all the right things, but a bloodstream infection is serious.
Thankfully, I am much more comfortable with all things PICC line, except for the major frustration of getting air out of his TPN (nutrition) infusion before I hook him up at night. Air in the bloodstream, not good. I’m not one to use curse words very often, but they’ve been slipping out this past week more than I would like to admit. The infusion nurse told me, in time, I will get it. Hopefully by that time, he won’t need the PICC anymore!
The plan is to give his gut another week of rest and then talk to his GI doctor about possibility trying feedings again.
Continued prayers for no PICC line complications and patience for me with starting Sam’s infusions.
Home Sweet Home
Faith Over Fear
Sam Strong
Thankful
I know where we are! This is the street that leads to my house!
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.
Faith Over Fear
Sam Strong
The Plan
Ready for surgery!
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.
Music Therapy soothes the soul.
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.
Faith Over Fear
Sam Strong
It’s so good to see that smile again.
Thanks for making me better Sam!