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
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
The Procedure
Everything went well with the procedure yesterday. Sam’s esophagus was dilated (stretched) and this time, the doctor was able to pass the scope farther down. The last time, they were not able to get the scope through. Progress.
Generally, when Sam wakes up from anesthesia, he’s a champ. Not this time. Thankfully, he has been fever free and breathing on his own, but is pretty miserable and lethargic. We are hoping this is a combination of the RSV and being put under. It also doesn’t help he his culture showed he has a tracheitis on top of everything, which is not surprising for Sam.
He seems to be tolerating the Pedialyte we started yesterday. We are holding onto that!
Prayers he will tolerate his formula when we start it today. Prayers he will stop spitting and start swallowing. Prayers he will turn the corner today and we can go home!
Sam Strong!
Faith Over Fear!
He Made It
It was a rough weekend, but he made it. He’s been needing some oxygen support, but we still have room to go up. Nice job, my little warrior.
Now, prayers for his procedure today! Pray for the doctor involved. She knows Sam, but is not his primary GI doctor, which isn’t unusual for Sam when he is having a dilation. Pray for the anesthesiologist and the rest of the team who will care for Sam. Pray for no complications and that we’ll be able to come home today. Pray there is an easy fix and nothing else is going on. Pray for peace and continued strength for all of us.
Faith Over Fear
Sam Strong
Prayers to Stay Home
They were able to schedule Sam’s next procedure with his GI doctor, surgeon, and ENT for November 21st. Unfortunately, his little esophagus is seeming like it won’t wait that long.
After this last hospital stay, Sam’s respiratory doctor agreed it would be a good idea to keep him out of school until his next procedure. I get it. As much as I want Sam in school, I think the risks outweigh the benefits at the moment. We don’t need anything else on top of what’s going on medically.
Sam is really miserable right now, but we are home. His symptoms are indicating he needs another dilation. Hopefully, that’s all it is.
We called the weekend, on call GI doctor. Thankfully, instead of telling us to take him to the emergency room, she got him on the surgery schedule for Monday morning. I cannot tell you how happy I was about that. My heart was really dreading another hospital stay.
For whatever reason when Sam needs a dilation, he doesn’t tolerate his feeds. We are running Pedialyte at the lowest rate possible to hopefully keep him hydrated enough until Monday morning and avoid a hospital stay.
Please pray Sam will tolerate the Pedialyte and be able to stay home until Monday. Pray there is nothing else going on. This poor little boy could really catch a break.
Prayers for our stamina as we are tired. This fall has been hard. Prayers to calm our hearts as questions and concerns are hard to push aside right now.
I’m thankful to believe in a God who loves my little boy even more than I do, and that He will comfort and sustain all of us.
Faith Over Fear
Sam Strong
Eye Surgery Update
Except for his PTSD when we walked through the second set of double doors, Sam’s eye surgery went well. The genuine kindness and enthusiasm from the many who know him in surgery is definitely helpful. The tummy portion didn’t yield any answers, but we were able to get his feeding tube changed, which is always a bonus to get this done under anesthesia.
After Sam came out of recovery, the anesthesiologist stopped by to check on him. She commented Sam was doing much better than most kids do after this surgery. Yeah, he’s one tough little boy.
He was really miserable the first night, but has been doing really well since. The medical world never ceases to amaze me. It’s so crazy what they can do. We noticed right away, Sam’s right eye is straight!
We got a good laugh the next day when he hopped off the couch after his morning nebs and meds routine, pointed to his eye, shouting “Eye!”, in the funny way he says it, and started running. He often runs circles around our center island in our kitchen. He started his run and kept bouncing off the cupboards. Again, he noticed something was different. We couldn’t help laughing at what looked like a ball in a pinball machine.
One of Sam’s home care nurses said, he’s a reminder that things could be so much worse. He goes through so much and stays so happy all the time. Well said.
Sam Strong
Eye Surgery Tomorrow
Sam will have his first eye surgery tomorrow. The hope is this will fix both eyes and he will only need the one surgery. He will also have a scope to look at his esophagus (endoscopy).
The ophthalmologist doing the surgery explained, “Often there are kids who have one lazy eye that needs surgery to be corrected, sometimes there are kids who have two lazy eyes that need surgery to be corrected, and rarely, are there kids who have two lazy eyes and nystagmus that need to be corrected with surgery.” Yep, that sounds like Sam.
As always, pray for his doctors, nurses, anesthesia team, and anyone else involved. Pray for a smooth and quick recovery for Sam. Pray for a successful eye surgery and answers to our seemingly never ending digestive issue questions. Pray peace for our hearts.
Sam Strong!
Covid and Then Some
April was not so fun in this house, but thankfully we have all recovered. Most importantly to us, Sam is okay and we kept him out of the hospital.
It started with me not feeling too great. I already tested negative for Covid earlier in the week because we knew we had been exposed. When I started feeling cruddy, I tested again. Negative. Whew.
I had several rough days. Thank you Lord for home care nursing! On a normal day with Sam, we are incredibly thankful for our home care nurses. When he gets sick, even more grateful. Add me getting sick on top of all that. Home care nurses. No words.
Sam tested negative too, but then started getting sick a few days after I was feeling cruddy. Oh shoot. He was really sick for a good six days. He was on oxygen for four days and all the home therapies we could do that aren’t legal in most homes. We did get very close to having to bring him to the hospital, but we were able to keep him home. Again, home care nurses. Priceless.
About a week later, after I had started feeling better, I couldn’t smell or taste anything. Wait a minute!?!? I went and tested again. As I suspected...positive for Covid. What?! Those of you who have experienced these symptoms of Covid can understand how annoying it is! I’m happy to say it didn’t last too long.
Sam’s pulmonologist sent a nurse to the house to test Sam. Positive. Bummer. There was a lot of praying on my part, that he would be okay and we would be able to keep him out of the hospital.
Sean tested positive. The next day he started feeling cruddy. He was all excited to be able to get some things done around the house, but he was down for the count for almost ten days.
Will and Abby both tested negative, but had to do distance learning until their quarantine was up. Have I ever mentioned how much I love distance learning? Oh yeah, cause I don’t, not even a little. Because Abby ended up testing positive, she was able to go back to school a few days before Will. I’ve stopped trying to make sense of all the Covid rules.
During all this hoopla, I found out my grandma passed away. She was ninety-five, went peacefully, and although she was dealt a hard hand of cards in life, she lived a good life. Her legacy? She loved Jesus, taught us to pray, read our Bible, and have a relationship with Jesus.
Towards the end of her life, she could barely speak. I know she recognized us when my sister and I saw her for the first time in a long time. She clearly said two of my four children’s names. It wasn’t by chance she squeezed the two names out I have fought for on my knees in prayer countless times the past four plus years. I believe it was her heart that said those two names that day.
We didn’t get to go to her funeral, but this is where technology is a blessing. Thank you to my brother-in-law who held his phone up the entire funeral service so I could “be there”.
Me, and how I remember, my sweet Grandma.
While Sam was sick, he was scheduled to have an upper endoscopy to check on his esophagus. As we suspected, surgery needed to be rescheduled.
To recap, Sam’s last dilation was in January. His surgeon told us, when Sam can go for six months without a dilation, he’ll give us the “a-okay” to go to Cincinnati.
Tomorrow, Sam will have his rescheduled procedure. It’s been almost exactly four months since Sam’s last dilation. We are hoping and praying, he will not need to be dilated.
Sam Strong.
Faith Over Fear.
Sam...
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.
Okay, okay, I’ll stop.
Faith Over Fear!
Sam Strong!
Peace Even When...
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.
Another Dilation
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.
Faith Over Fear!
Sam Strong!
An Answer, With...
an easy fix! Thank you Lord!!
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!
Faith Over Fear!
Sam Strong!
Cincinnati?!?!?!
Bam! Pow! Zap! That's how the appointment felt. I know things could be so much worse, but it felt like a sucker punch right in the gut. I have no idea what a sucker punch to the gut feels like, but at that moment, I think I did. She could not have given the news in a more kind, respectful way, but it wasn't what I was expecting. It was evident by her demeanor from the time she walked into the room she was was uncomfortable. It wasn't long before it was clear why she was uncomfortable. She was the one picked to share the not so great news. She asked what my goals were for Sam. In every other word, I told her I wanted to get rid of the trach. It feels a bit foggy after that. All I know is she said they were all scratching at the edge of their boxes. They (Sam's care team) have some things they could try, but they are very risky, and wouldn't want something to happen to Sam and then regret they hadn't referred him to Cincinnati. Collectively, all of Sam's doctors have decided because of his continued complexity, they are not what's best for him. They referred him to Cincinnati Children's Hospital's Areodigestive & Esophageal Center.
Although it felt like a shock, it shouldn't have been. It's a subject that's been danced around since Sam was two and a half months old. And since March, it's been really danced around. I think we were just in denial. We have so much faith and trust in his doctors here.
Here is a post I started writing before summer started, but didn't finish...
Sophisticated can be defined as complex or intricate, as a system, process, piece of machinery, or the like. Quite fitting for Sam. It's not the first time, doctors have no clue or haven't heard of some of Sam's diagnoses. It is the first time though his doctors are not quite sure what to do.
After discussing with gastroenterologists and surgeons nationally, Sam's docs have come up with a plan. And thankfully, after some discussions, it doesn't involve going to a hospital out of state. Let's just say Sam is a rare case. In all reality he has been since the the beginning. He continues to be quite medically complex, but despite his complexities, for the most part, he's thriving!
Sam had his 23nd and 24th, if I've counted correctly, esophageal dilations in the last couple of months. Once again, he made general anesthesia look easy and recovered very quickly both times. It was a little easier to hand him over to surgery the past two times as he got something to help him feel relaxed and sleepy before they poked and prodded at him. Like I said before, as Sam gets older things get harder for him and, in turn, us. He's starting to remember what happens to him when we go certain parts of the hospital.
Here's a short story on him getting smarter...
Because Sam doesn't eat or drink anything by mouth, there's a bit of a rush to get a new feeding tube in if it comes out unexpectedly. He's a very busy boy and despite our efforts to to rig ways to keep the tube in, inevitably it gets pulled out once in a while. It doesn't help he eats fourteen of the twenty-four hours in a day. Backstory...he goes to radiology to get his feeding tube changed every two to three months. He's had this type of feeding tube for almost two years and it's always gone fairly smooth when we get it changed. As soon as we walked into the radiology room, Sam instantly became agitated. One thing we've all learned about Sam is unless something is really wrong, he doesn't get upset. It wasn't long before we figured out what the problem was. He knew exactly what was about to happen to him. I can't imagine a six inch tube pushed into your stomach and then through your small intestines feels real hot. Poor buddy. Every procedure gets a little tougher as he gets older, but overall, he's a trooper.
We will be taking a little trip to Mayo where Sam will have a special test (esophageal manometry) done to determine how well his esophagus works. Pediatric esophageal manometries are not done very many places and it's a relatively new test done at Mayo for a pediatric patient who doesn't eat or drink by mouth. We are just happy to be able to stay in Minnesota. Depending on the motility of Sam's esophagus, will determine which surgery will be best for Sam. Either way, something needs to be done as they cannot continue to stretch his esophagus every month. This creates retching and retching means the trach can't come out. In short, in order for Sam to get rid of his trach, which we all thought would be long gone by now, all of his tummy stuff needs to be fixed first. As Sam's doctors would say, Sam is complex. He's never been an easy fix, but they continue to search for answers and we couldn't ask for a better, more dedicated team.
Sam will have another dilation in July. Continue to keep him and the rest of us in your prayers.
Again, although Sam is a full-time job and then some, he's doing very well. He's making some sounds and knows about 15-20 signs. His newest sign is "outside". Before, he would grab my hand, pull me to the gate, and want me to hold him. I'd pick him up and then he would wiggle his little body to motion me more towards the gate while also getting mad. Or he would just keep pushing me into the gate. We've been working on the sign for outside. The other day, he did his thing where he pulls me to the gate, but this time, signed "outside"! We were pretty excited! I wasn't going to take him outside, but who could resist that?!
To make a VERY long story short, since March, Sam has had four more esophageal dilations, which I think makes twenty-five. As always, he recovered beautifully from all of them. He also took a trip to the Mayo Clinic. He did not end up having the esophageal manometry done there. Although Mayo is an amazing place, it's not the best place for Sam. He's a rare case and his doctors want to him to see the best of the best, which for him, is Cincinnati Children's.
Since the news about a month ago now, I've been able to change my thinking from, we HAVE to go to Cincinnati to we GET to go to Cincinnati. Let me tell you, A LOT of negative thoughts were running through my head when I was hashing it out to the big man upstairs. How in the world are we going to get him there?! We've never been overnight with him unless it's the hospital. What if we have to be there for a long time? I don't want to split my family up again. How is this going to work financially?! Had I of known, I would have saved the money we used to build a deck and used it for Cincinnati instead. What if we go all the way there and they can't fix him?
These are all legitimate concerns I still have and there are many more, but since I've changed my thinking from we HAVE to go, to we GET to go, and let go and let God, I'm much more at peace with it. My plans are not His and although that can be hard sometimes, my life is a lot less stressful when I can truly accept that. I will always bank on that, although Sam is complicated, he is here.
We have started the process with Cincinnati, but don't have any details. Again, we will wait, which according to Dr. Seuss is the most useless place. Yes, I agree, waiting is useless so that's why I choose not to dwell on it. I choose not to wait, but to enjoy the moments I am in right now, like...
...Sam's doctors okaying him to start school next week.
...being home and able to send my kids off to their first day of school.
...getting rained on the entire kayaking trip we took for the first time.
...going to the great MN get together.
...taking Sam swimming. Shhhhh, don't tell his docs.
...having a lemonade stand to raise money for Ronald McDonald House Charities.
...going strawberry picking.
...being a part of my sister-in-law's beautiful wedding.
