It took two attempts to clear Sam’s PICC line, but they were able to do it. Thank you Lord.
We were able to come home today as planned! I packed for a week and mentally prepared for longer. It feels so good to be home. Fortunately and unfortunately we were able to leave sooner because Sam is on TPN and has his PICC line.
We will give his tummy time to heal and then the real test begins. When we get the okay, we will start feeds very slowly through his g-tube (feeding tube). He is going to tolerate feeds and the PICC line will be a thing of the past.
Day one post-op was not great, but anyone who has a major surgery would not be great on the first day. He had a really rough first night. Sleep was at a bare minimum for both of us. He needed a lot of suctioning (his trach) and had a lot of retching (throwing up).
Day two was rough with some good sleep periods, but he was miserable when he was awake. Overall, he slept good that night. Progress.
Day three he showed a glimpse of hope in the morning. He melted some hearts with a few smiles. He went downhill fast later in the morning. At first, it looked like a curve ball, but then as I payed more attention to his symptoms, a light bulb went off. Intussusception. Ugh. Poor guy. I prayed the intussusception would resolve on its own so we wouldn’t have a real curveball.
We tried so hard to stay away from the morphine, but by late afternoon I caved per his nurse’s gentle nudge of encouragement that’s it’s probably a good idea. It was a good idea. It definitely helped. Intussusception comes and goes in waves and is apparently very painful. Your small intestines are not suppose to telescope in and out of each other. The only thing to do is wait and hope it resolves on its own. With a few more doses of morphine that day and throughout the night, he slept really well. It was looking like Sam would hit this curveball out of the park.
Day four, he woke up happy and sat up for the first time! He was playful in bed the whole morning and had fun with music therapy. Music therapy. It gets my heart every time. She started singing the “Hello” song and the tears dripped down my face like a faucet. I couldn’t control them if I tried. It’s the same song I’ve heard the last six years from several different music therapists. Moments of Sam’s little life flash through my mind like a trailer for a movie. I feel every emotion possible in a matter of seconds so deep in my soul, I can’t control the lump in my throat and the tears that follow. After it’s over, they are good tears, the ones that have to happen once in a while to keep me going. I’m thankful for a God who meets me right where I am at.
In the afternoon Sam got a break from all his cords. I decided to try get him out of bed. He didn’t want to. He sat on my legs as I knelt down to the floor, but once I stood up with him and held his hand, he had an ear to ear smile and walked to the door. He played in the hospital playroom for about an hour before he tuckered out. My heart was full and I know his was too. He fell asleep early tonight. Overall, it was a great day.
Here comes the curveball. Sigh. It’s 9:30pm and the nurse is about to start his TPN. I take an overdue shower while there is someone in the room with him. I step out of the bathroom and a few moments later I hear, “It won’t flush.” Crud. A PICC line that won’t flush is not a great thing to hear. Now we hope we can clear the line that is likely blocked by a formed blood clot. The good thing is that it’s highly unlikely we won’t be able to clear the line.
So, prayers the PICC line will clear and flush easily.
I believe it will and I’m also very hopeful Sam will sleep good tonight and we will get to go home tomorrow.
Holding our breath. Surgery is done and it went really well. It took a little over three hours. Exhaling. His surgeon crossed both fingers in the air and smiled as he walked out of the room to let us know things went well. His surgeon has been with Sam since he was a baby. Sam has a very special place in his heart.
Sam came out of recovery very sleepy and when he has been awake, is in a lot of pain, but overall, doing really well.
Now holding our breath again. Here’s the part I have to speak away my fears. Here the part where Sam likes to throw curve balls.
Just breathe. He is not going to have any complications. He is going to sleep well tonight. We are going to keep his pain controlled. He is going to recover quickly.
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.
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.
Ready to fly! Trached kid playing is the sand. Sand in the airway, not good. Shhh…
Prayers Sam can kick this stomach bug quickly and go back to school where he makes people better!
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’s g-tube (feeding tube) feedings are going really well. He’s tolerating the small amounts we are giving him. To put it in perspective, we are slowly giving him about a med cup and a half three times a day. The mixture consists of puréed green beans, infant oatmeal, and his specialized formula. Yum.
We were very excited to finally be able to start the diet Cincinnati Children’s had told us about last May. It’s a diet they came up with for gaggy/retchy kids who don’t eat by mouth. This is Sam to a tee.
Sam’s dietitian (who is the best) has put a lot of work into figuring out this whole thing after collaborating with a Cincinnati dietician only a few times. Everyone here is excited to try it and see the results.
There are many reasons for us to hope he tolerates his feedings, but obviously, we ultimately want to avoid another surgery.
Because we are going so slow with his feeds, it will be a while before we can get rid of the PICC line. As I’ve told you in the past, bathing Sam is a two person job and downright scary. Sam LOVES the water and is constantly trying to drown himself, literally. With the trach, he can’t be fully submerged in water, but because he has no idea the consequence is deadly, he continues to try. With that in mind, washing his hair has become an art for us. Now, add a PICC line on his arm that can’t get wet. Hmmm…
Before last week, Sam hadn’t had a real bath since November. Yes, you heard me right, that’s over two months ago. For all you mamas out there who feel guilty your little ones have gone too long without a bath, don’t. Sponge baths can only go on for so long though.
Bath time with a trach, PICC line, and a feeding tube. We did it.Hmmm…what can I do next?
HALT.
All that writing was before we ended up in the dreaded Children’s emergency department (ED). Sam’s skin at his PICC site was looking fabulous. Last week, we noticed some irritation. As the week wore on, it didn’t get better. Bummer.
After we sent another picture of Sam’s arm to his infusion nurse, she called right away, “I’m so sorry, but I think you need to take him in.” Exactly what you want to hear on a Friday at 4:00. He had zero symptoms so it felt very odd taking a happy little boy to the ED. In a weird way, it felt good to have the folks in the ED see what Sam is like when he’s himself. When we bring Sam to the ED, it’s because we have exhausted all of our home treatments and he’s miserable.
As a medical mama, you miss a lot of your other kids stuff. I’m grateful to the people in our community who are aware of this and send me pics.
Thankfully, we only stayed one night. In Sam’s history of hospital stays, a one nighter has only happened three times, and the first two were day surgeries when he was a baby, because they didn’t quite trust him yet. He was treated for cellulitis at his PICC site and twenty-four hours later, we were on our way home. Of course, everyone was happy to see him on the in patient side.
The next day around 4:30 p.m., Sam fell asleep on the couch watching his iPad. Uh oh. This is not like Sam. I hooked him up to his pulse oximeter (checked his heart rate and oxygen). His heart rate was a little elevated. Shoot, but not too concerned. As his heart rate went up, he started to develop a fever. Crap. Oh, Lord, please don’t let it be sepsis. After a few phone calls to the infusion team and his doctor, we were advised to bring him back to the hospital. Sepsis is always a cause for concern with a PICC, but the risk goes way up when you have a skin infection at the site. We packed ALL the things again and headed back to Children’s. My fear was trying to set in, but I was pouring my faith into my heart.
We checked in, they got his vitals, and we were in a room in record time. The nurse set up the blood culture labs before the doc even saw us. She was ready. The doc came in and ordered the necessary tests. They drew labs and swabbed for all the viruses. Side note. One of the beauty’s of having a PICC is not having to get poked. We waited.
Sam and Dad are sleeping and mama is praying it’s not sepsis.
The doctor came in the room and my heart beat a little faster. At that point, Sam’s labs weren’t concerning, but Sam was positive for Covid. Thank goodness!! He likely picked it up at the hospital when we were there, but who knows! Poor buddy. If you’re wondering why I was so happy about Covid, it’s because I’ll take Covid over sepsis any day. We packed everything up and headed home. It was a four hour round trip and another late night, but record ED time and we got to go home.
Other than a low grade fever, Sam’s rocking Covid so far. Praying it stays the course it is.
Thankfully, through all this, he’s still tolerating his feeds.
We were surprised when he actually left the mask on for a couple of minutes at the eye doctor.
This all started with an idea/dream to help normalize something that is not for families and caregivers who will take a child home from the hospital with a life saving breathing tube (tracheostomy). This dream is now a reality. I am so excited for the next phase of Superman Sam’s Survival Kit and share hope with many more families and caregivers now and in the future.
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 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!
