Feeds Update
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.
Sam Strong
Faith Over Fear
Procedure Today
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!
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!
PICC Line
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!
Faith Over Fear
Sam Strong
Guessing Game
This poor kid. He continues to completely amaze me. He is the toughest little boy I have ever known.
On top of his esophagus being narrow, RSV, and tracheitis, the last three days, he’s had two infiltrated IV’s and intussusception again.
We played a guessing game for a few days with the intussusception. I had a light bulb moment on Thursday morning he was having intussusception again, but you can only catch it when it’s happening. To recap, we know Sam had intussusception in April and again when we were in Cincinnati in May. Needless to say, when we finally caught it on the ultrasound a few days later, I was bummed and felt validated at the same time. Because the intussusception is resolving on its own, there’s not much to do besides gut rest, which Sam’s been doing for the past week.
Thankfully, the first infiltrated IV healed on its own. The second was not as fortunate. His hand puffed up like a balloon to his elbow and because it didn’t heal on its own, they had to treat it. Oh no. This has only happened once in his life when he was a baby. I say ‘only’ because for how many times Sam has had an IV placed, that’s pretty good. I told the nurse, “I don’t want to be in the room when you do it.” I knew what treatment meant. Five needles poked in his little arm at the same time. I didn’t have it in me at that point to help hold him down. Thank you to the nurses who reassured me, it was more than okay for me to step out. We have barely and thankfully avoided another IV since then.
During all the guessing, the hospitalist said, “I always have at least one on the unit. The one who keeps me up at night when I go to bed and the one I think about when I wake up in the morning and that is you this time Sam.” If I had a dollar for every doctor I’ve heard say something like that…
It’s reassuring though. There’s comfort in knowing someone is losing sleep over figuring out your child.
Now we need Sam to start tolerating his feeds. He tolerated the Pedialyte great, but as soon as we introduce formula, he seems to go downhill. In order for us to break out of jail, he needs to be tolerating formula. You’ve got this buddy!
He’s had some pretty rough days, but today was overall good. Praying it’s all uphill from here. Prayers for continued wisdom and discernment for his doctors. Prayers for the intussusception to not come back. Prayers he will tolerate his feeds. Prayers for a restful night tonight.
Sam Strong
Faith Over Fear
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!
Good News
Sam isn’t doing great, but he’s been off the oxygen most of the day and has no fever. As long as he behaves himself, they will do the procedure (esophageal dilation) tomorrow!
These kind of things are a balancing act when it comes to medically complex kids. It often comes down to a risk benefit analysis. And there are so many factors involved. We are incredibly blessed with the care team Sam has when we are here. It is evident they care so much about our sweet little boy, want to get him better and back home where he belongs.
The smiles are few and far between, but he did sit up a few times today and even played for a couple of minutes. We’ll take it! So far, it’s looking like everyone is wrong about the getting worse before getting better. They are going to be wrong.
Prayers for an uneventful evening for Sam. Pray he can continue to breath on his own and stay fever free. Prayers for the procedure tomorrow and all who will care for him.
Thank you for all the love and continued support for our family. We are truly blessed.
Faith Over Fear
Sam Strong
Dilation #5 Update
I suppose no news is good news, right? For the most part, yes.
Sam’s dilation went very well. His esophagus was very narrow, but not as narrow as the last time he got dilated. Good news!
Again, we wait. If symptoms begin, we call surgery and they get Sam on the schedule. Generally, his symptoms consist of retching (throwing up), which start to become more frequent and violent as time goes on. Eventually, he’s not able to control his secretions, so he spits a lot too. Basically, he still creates secretions (spit), but if his esophagus is narrow enough or closed, there is no other place for the secretions to go except out his mouth. This makes for a very nauseous little boy. Poor guy.
After Sam’s dilation, his surgeon discussed WHEN Sam is able to go three months without a dilation, then he’ll plan to get Sam on the schedule to look at his esophagus. If things look good and open, we wait again. When Sam can go for at least six months without a dilation then his surgeon will feel good about us planning another trip to Cincinnati to hopefully get his airway fixed.
Sam also had a granuloma cauterized or how I like to make it more visual for you, the extra skin on the hole in his throat, sizzled off by a fire pen. This went well too. Although, it was a lot to look at after. For the next week or so, we cleaned gross puss and what looked like black soot around his trach site. Yuck and again, poor guy! Thankfully, it all healed very nicely.
The day after Sam’s dilation he seemed like he was recovering well. When he woke up the next morning, things went south very quickly. He ended up with a tracheitis. He had a couple of very rough days. We were able to catch this right away and treat the nasty, airway bacterial infection. Along with our hard work and the antibiotic nebs, like magic, Sam was back to his lively self in no time. Thank you for home care nurses!
Except for the spitting. No, not another thing, little buddy. His demeanor was back to his norm, but he wouldn’t swallow his secretions. Per Surgery we should bring him in to be evaluated in the next couple of days, unless things got worse, which for Sam means going to the ED (Emergency Department). Not the dreaded ED.Besides him not swallowing his secretions, he seems totally fine. Sometimes I wish they had another place for complex kids to go in these situations.
The next day, after talking with Sam’s Pulmonologist, she too thought he should be evaluated. Bummer.
We had planned to take him in early the next morning, knowing the less busy times of the ED. Sam had different plans. Good plans! When he woke up, the spitting had stopped!!! Thank you Lord!!!
Sam has been back to his spunky self, continuing to teach us what life is all about.
Sam Strong!
Faith Over Fear!
Dilation #5
Sam will have another dilation tomorrow. Yes, he’s had WAY more than five dilations, but I started the count over after his last major surgery. We are hoping and praying he won’t need as many as the first time around.
In the four plus years, Sam’s had a trach (breathing tube) and feeding tube, he hasn’t had to have a granuloma cauterized (burned off), which is pretty good. This is basically skin starting to grow where it shouldn’t. Before the dilation, he’ll have a tracheal granuloma cauterized. Typically, this can be done in the clinic, but Sam’s ENT thought it would be better for Sam under anesthesia, also knowing he could do it alongside one of Sam’s dilations. We were very thankful for this. Sam’s nurse and I were not looking forward to having to hold him down for that procedure!!
We are also thankful, Sam will get his feeding tube changed in surgery tomorrow. As I’ve said before, this is a procedure he gets done routinely every two to three months. It now takes three, sometimes four of us to hold Sam down. As soon as he sees an x-ray table now, his little body clenches me with fear. We have to literally peel him off of me, to get him on to the table. It’s a fairly quick procedure, but I’m sweating by the time it’s over. Sam’s one tough cookie, so when he’s sobbing hysterically throughout the procedure, we know it must be painful.
We are thankful to be able to knock out three procedures in one tomorrow!
We’ll take some extra prayers tomorrow for Sam’s Surgeon, ENT, and anesthesia team. Pray for a smooth and quick recovery.
Sam Strong!
Faith Over Fear!
No News is Good News
Sam’s dilation went well. His esophagus was VERY strictured (narrow), almost shut again. The dilation was definitely needed.
As in the past, as soon as Sam gets dilated, his spitting and retching almost instantaneously stop. These are usually the tell tale signs he needs a dilation. Unfortunately, there isn’t anything else that can be done, except put him under anesthesia, and stretch his esophagus.
As of now, surgery will wait to hear from us. IF Sam gets symptoms, they will put him on the schedule as needed. With Sam’s thirty-five plus esophageal dilations, we’ve only been wrong once. There are many, but one great thing about Sam’s care team, is they trust our judgment. They listen, really listen to us. I call the surgery scheduler, who I’m on a first name basis with, and they get him on the surgery schedule ASAP.
We are going to believe Sam won’t need as many dilations as the first time, and even better, he won’t need anymore.
I’ll leave you with a moment from a day in the life of Superman Sam. You just can’t make this stuff up!
We were sitting in “school” with Sam. When Sam does distance learning, we prop his iPad on the kitchen island and he sits on one of the bar stools. I usually stand next to him. His nurse will stand or sit on the stool on the other side of him. All of the sudden, I thought I noticed something about Sam’s mouth. Does he have a missing tooth?!?! With Sam’s camera on, I didn’t want to disrupt school.
As soon as school was over, Sam’s nurse and I pried open his mouth. Yes, we had to do this. It’s the only way to be able to see inside his mouth. Yep, I saw it right the first time, a bottom, front, tooth, MIA! What?!?! Where did it go?!?! Did he swallow it?!?! Was it in his bedroom somewhere?!?!How did I not know he had a loose tooth?!?!
Mom guilt, setting in. And then, that good ole self talk. Stop it!! You have a lot more things to keep track of in the world of Sam, then a loose tooth!!! It’s not a big deal!! He’s clearly okay!!
Mom guilt. Raise your hand if you’re a mom and have had mom guilt recently. Okay, I’m feeling better already. It’s so silly. Why do we do this to ourselves? Because, we’re human.
Give yourself grace mama. To me, giving yourself grace is acknowledging the situation, doing what you can to rectify it, then moving on, and letting it go. It’s knowing, we are not perfect.
From the mama with typical children, to the mama with special needs children, to the mama of a prodigal, and everything in between, give yourself grace, because we all need it, every single day.
Sam Strong!
Faith Over Fear!
We Out!
We are bustin’ this joint today!!!!! Forty-five unexpected days later and we get to go home!!!! I am overwhelmed with excitement. I cannot wait to see Sam’s reaction when we walk though the door.
A friend shared this with me today. God didn’t promise a storm free life, but he promises the storms won’t destroy us. I cannot agree more.
Thank you, thank you, thank you for your support and prayers!
Sam Strong!
Faith Over Fear!
I’m ready to bust this joint!
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!
Classic Sam
I wish I could tell you the last few days have been better, not worse.
I wish I could tell you his recovery is going smoothly.
I wish I could tell you we’ve been able to manage Sam’s pain.
I wish I could tell you we went down on the oxygen, not up.
I wish I could tell you Pseudomonas was not growing on the trach culture we decided to do the other day.
I wish I could tell you Sam’s turning the corner and he’s not been miserable the last few days.
I wish I could tell you we’ve gotten a good nights sleep the last few days.
I wish I could tell you Sam is using all of his signs (language) he knows and not just “help”.
I wish I could tell you he’s on less pain meds and has less IV poles, not more.
I wish I didn’t have tell you, he will be getting a PICC line later today.
I wish I could tell you we’re getting ready to go home.
I can tell you, we were able to take out his NG tube this morning, which has been hard to keep in the last few days.
I can tell you, clinically, leaking doesn’t look like what’s going on.
I can you, all of the appropriate measures are being taken to figure out the problem.
I can tell you, Pain and Palliative is now on board. They have been a game changer for Sam in the past.
I can tell you, although he’s on a lot more meds and pretty much sedated right now, he’s finally been comfortable for the last hour.
I can you, my little boy is a fighter and he will come out on top.
Please don’t stop praying for my sweet little boy.
Faith Over Fear!
Sam Strong!
Superman Sam Update
For most part, we’ve been able to manage Sam’s pain. When the morphine wears off, he’s not a happy camper. The Intensivist went up a little on his morphine today, but he’s not quite to the full dose. Pray we can go down, not up.
He had another good night until they had to put a permanent cath in him because he went for a second time without peeing. Bummer, but not the end of the world. The rest of his night was good.
We tried yesterday and today to wean him off the oxygen, but that didn’t go so well. We’ll try again tomorrow. Because of Sam’s pain, he’s been on scheduled morphine, which can mess with oxygen levels and the bladder.
Sam had a very major surgery on Wednesday. All of what’s happening is not out of the norm. Although, it’s not fun to watch, all of the docs are happy with what they are seeing so far.
We are not out of the water for leaking. Keep praying for no leaking.
Sam Strong!
Faith Over Fear!
Overall, Things Are Good
Sam had a pretty good night.
He hasn’t been awake too much today, but when he is, he’s pretty ticked off. Pray for pain management.
From a surgical and PICU standpoint, things look good.
He hasn’t peed yet so we’ll take prayers for that.
Continued prayers for no leaking.
It’s so hard watching him have to go through all of this. My goodness, this little guy is so strong!
Faith Over Fear!
Sam Strong!
One Hurdle Cleared
THANK YOU for all your prayers! After over a SEVEN hour long operation, everything went a-okay.
Exhausting. It’s like you hold your breath for seven hours. Exhale.
And now for the next hurdle...recovery. The next few days will be an even bigger hurdle to jump.
Remember to breathe.
Please pray for no post-operation complications, specifically, no leaking.
Faith Over Fear!
Sam Strong!
Surgery Jitters
It’s now been over fifty times.
Over fifty times his little body has been put under anesthesia. Over fifty times needles, scalpels, scopes, and more have messed with his insides and outside. Over fifty times of watching my little boy slowly roll away on a hospital bed.
Just because we have done it over fifty times, doesn’t mean it gets any easier. If anything, it gets harder. The older Sam gets, the more aware he becomes of what’s going to happen. He’s a smart little boy, knows the routine, and knows it’s not going to feel good. That whole white coat syndrome you hear about, it’s a thing.
This happy little guy has been through so much. He probably won’t remember all of it, but this mama and daddy’s hearts do and will.
We can worry or trust God, but we can’t do both. We choose to trust in a God we believe has a perfect plan for Sam.
Pray for our little Superman on Wednesday. Pray for our surgery jitters. Pray for the surgeons hands, for his anesthesia team, and all the other medical staff who will be involved. Pray Sam doesn’t throw any curve balls, as he’s unfortunately infamous for. Pray for a smooth and quick recovery.
Sam Strong!
Faith Over Fear!
Raising the Unexpected
I had to share this blog post written by a fellow Children's Minnesota advocate. She so beautifully and eloquently gives a tiny glimpse into the life of the unexpected complex child.
Different story. Same mama feelings.
I GET to raise the unexpected, his name is Sam.