Disclaimer: The author of the content below is not a medical professional and does not have any medical training. As such, the contents on this page, including text, graphics, images, and any other material are for informational purposes only. The Content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Our full medical disclaimer can be found by clicking here.

 

 

Raise your hand if you followed James’ spinal fusion surgery and the long recovery on his Facebook page. Oh, that’s right, I can’t see you. I am just going to assume that at least some of you are raising your hand. For those of you who didn’t, let me fill you in.

Before I start, I should probably say that this was just our experience. If you are considering this surgery for your kid, I hope this doesn’t deter you. James took a little bit longer to recover than was expected, but that’s just James. His digestive system has a habit of shutting down after a surgery, which prolonged his recovery in the hospital. Now that James (and Stacy) are finally back home, I can say that I’m glad we did the spinal fusion and I think that he will benefit immensely from having a straighter spine.

I’ve been going over all of our notes and Facebook updates from the surgery and the recovery trying to figure out where to start, how much to include, and if there are things I should leave out. James was in the hospital for exactly one month, and during that time there have been a collective 116 posts on Facebook between my page, Stacy’s page, and James’ page. Add in all the notes that Stacy made in James’ medical binder, and there was a lot of stuff to weed through, so I decided to just post everything in chronological order. It will probably make for a long post, so I will apologize ahead of time.

 

 

The Road to the Spinal Fusion

Ready to get started? Okay, so let’s rewind all the way back to early 2017. One of the many things James was born with is scoliosis, and because of his muscle tone abnormality, and his inability to hold himself upright, the scoliosis progressively got worse as he got older and bigger. Compared to some of his other issues, namely the epilepsy and the inability to clear his own secretions, the scoliosis was lower on the list of things to worry about. In early 2017 there was growing concern that the curvature of his spine due to the scoliosis was causing some issues with his internal organs, especially his lungs.

On April 14, 2017, we took James to see a pediatric orthopedic surgeon (aka spine doctor) to get his opinion. They took a couple of x-rays—one sitting, and one laying on a table while Stacy and I tried to pull him straight—so that the doc could see what James’ spine looked like.

 

 

You can see just how bad the curvature of his spine is, especially in the “pulled straight” x-ray. The doc’s recommendation at that time was to have James go back to using a TLSO (thoracic-lumbar-sacral orthosis), or what Stacy calls a turtle shell, and then check back in a month to see if it had any effect on the scoliosis. He had outgrown his old TLSO and needed to be fitted for a new one. Here he is wearing it when we picked up the new one in May 2017:

 

 

It’s hard to tell in the picture, but the TLSO is basically two pieces of plastic (front and back) that are molded to fit around his torso to keep it straighter and to keep him from slouching to one side. Stacy jokingly refers to it as a turtle shell.

We went back to see the spine doc in late June 2017 and had more x-rays taken to compare to the x-rays he had taken in April. The doc was pleased with the way that the TLSO was straightening James’ spine. The top curve of his spine went from around 70 degrees to 54, and the bottom curve from 54 degrees to 35. He said to continue using the TLSO for the time being and took surgery off the table.

A year later, in June 2018, we had another appointment with the spine doc to see how James’ spine was looking. Based on the x-rays, the doc decided to put spinal surgery back on the table. The TLSO hadn’t been continuing to straighten his spine like he had hoped. We talked about a couple of options—growth rods or a spinal fusion—but were leaning more towards going with the spinal fusion. The growth rods would eventually need to be removed and a spinal fusion would then be done, so the doc thought it would be smarter to just go straight to the spinal fusion (pun intended).

Before making his final decision, the doc wanted to talk with some colleagues to get their opinions on the best way to go. We met with the doc a couple of weeks later and after giving it some thought and gathering the opinions of other spine doctors, he had decided that it would be better for James to go with the spinal fusion.

The doctor sent everything over to the insurance company for approval and we had scheduled the surgery for July 25, 2018. A week before James was supposed to get the spinal fusion, we were notified that our insurance company denied the surgery because the curvature of James’ spine didn’t meet their criteria for the surgery. The curvature needed to be at least 70 degrees to meet insurance’s guidelines for approval, but James was at only 59 degrees.

By February of this year James’ spine had blown past that 70-degree point and was at 74 degrees with his TLSO on, and 80 degrees without the TLSO. At that point, there was no way that insurance could deny the surgery so we planned to have it done in May so that James wouldn’t miss too much school and could have the summer to recover before going back to school in the fall.

 

 

Spinal Fusion Surgery

Now that we’re all caught up with everything that led up to the surgery, we can start talking about the surgery itself. First, I encourage you to watch the following video from Children’s Hospital Colorado that explains the surgery really well:

 

 

A couple of days prior to surgery, Stacy used some medical tape and a marker to outline James’ spine to give everyone a general idea of how curved his spine was:

 

 

Note that his spine doesn’t really angle to the left like that; it is curved. It was just easier to make straight lines with the tape than it would be to try to make it curve. But you can still get an idea of how out of whack his spine was because of the scoliosis.

May 23rd was “spinal fusion day” and I’m not going to lie, the closer we got to surgery, the more anxious and nervous Stacy and I got. Of all the surgeries James has had, this was by far going to be the biggest…and longest. The doc had estimated that surgery was going to take 6 to 8 hours followed by one to two weeks of recovery time in the hospital.

Surgery was scheduled for 8:15 am so we needed to be there at 6:00 am to register and get prepped for surgery. James’ registration number:

 

 

FJ01 = Fans of James is #1

I think it was when we were in pre-op when it hit us that this was really happening. We had been discussing the possibility of James having back surgery to correct his scoliosis for about two years, and then there we were. In just a couple of hours, he would be cut open, and have a couple of rods attached to his spine. I probably don’t need to tell you that Stacy was a bit of a basket case. I wasn’t much better but was trying to hold it together enough to comfort her.

 

 

 

 

James went off to the operating room at around 8:45. Stacy and I went to the cafeteria to grab some breakfast and then to the waiting room. We knew ahead of time that we were going be getting one of their “family waiting rooms” since this was going to be a long surgery. My parents, Stacy’s parents, and James’ one-on-one nurse from school were all there to wait with us.

 

 

James’ teacher and therapists couldn’t be there because of school, but they showed their love and support by wearing their Team James shirts:

 

 

We received periodic updates throughout the surgery:

• • 10:00 am: the first cut happened
  • 11:43 am: update to let us know that everything was good so far
  • 2:00 pm: finishing up attaching the rods
  • 3:10 pm: closing up and will be heading to the PICU in about 30 minutes

The doc came out to our waiting room to discuss the surgery at around 4:00 pm. He didn’t use these exact words, but he basically said that James was a rockstar. He was very pleased with how well the surgery went. He didn’t even need a breathing tube after surgery, just a little bit of oxygen via a nasal canula.

After we finished talking to the surgeon, we hugged and thanked everyone that stayed with us throughout the surgery, and then headed up to see James.

 

 

 

 

Recovery

Prior to surgery the doctor estimated one to two weeks of recovery in the hospital. We were hoping that since the surgery went so well that the recovery would be a breeze, too. Could James be ready to go home in a week? Those of you that are following James on Facebook know that James spent a lot longer than a week in the hospital after the surgery. It was almost a month! Are you ready to read about James’ long road to recovery?

Before we get started, I just want to remind everyone that James’ long hospital stay after the surgery didn’t really have anything to do with the surgery itself. His body—primarily his digestive system—sometimes shuts down after a surgery. This isn’t the first time this has happened, and I’m sure it won’t be the last. His body just needs some extra time to bounce back after a shock to the system, so to speak. Since the hospital didn’t feel comfortable sending him home until he was able to tolerate a large enough quantity of his feedings, we had to wait until he was. If you are thinking about spinal fusion surgery to correct your child’s scoliosis, please don’t let this dissuade you.

With that disclaimer out of the way, let’s get started with the recovery, shall we.

 

Thursday, May 23rd: Spinal Fusion Surgery

As I mentioned above, the surgeon was really pleased with how well the surgery went. He didn’t need a breathing tube, just a little bit of oxygen through a nasal canula. He was also on IV pain meds and an antibiotic.

 

Friday, May 24th: Recovery Day 1

 

James had a rough night with trying to figure out how to keep his blood pressure up and heart rate down. We think part of the problem was that he had to sleep on his back, which caused issues with his secretions. Because he can’t swallow, secretions tend to build up in his throat, which requires suctioning. He normally sleeps on his belly to allow gravity to drain his secretions.

An orthopedic resident stopped in to see how James was doing and we discussed the possibility of James sleeping on his belly like he normally does so that he doesn’t aspirate on his secretions and get pneumonia. The resident talked with the surgeon and said that it would be fine.

They took a chest x-ray and the left lung looked cloudy so he might have pneumonia. We weren’t sure if it was from sleeping on his back or not. Fortunately, he was already on an antibiotic for the surgery so that should also attack the pneumonia.

They inserted a catheter into his you know what to collect his urine output.

Getting nutrition from IV fluids but may switch to his normal formula tomorrow.

He didn’t seem to be in any pain so there was talk about taking him off the IV pain meds and just using strong Tylenol if needed for pain.

Went for a CT scan to check to make sure everything from the surgery looks okay. All of the parts are in the right places.

 

 

James was unable to see the TV in his hospital room, so I came up with a solution. I went home to get his iPad and then had to track down some sort of mount so that we could attach it to the bed. That was a bit of a challenge. The closest store that had something that looked like it might work was about an hour away from the hospital. It wasn’t perfect, but it worked good enough.

 

 

Tummy time for our not-so-little superhero:

 

 

 

Saturday, May 25th: Recovery Day 2

James (and Stacy) had a rough morning. They both had a decent night’s sleep…until James desatted. Stacy was awoken to a big commotion. There were lots of nurses in the room trying to get his sats back up. Suctioning wasn’t working. Oxygen wasn’t working. They even tried an Ambu bag. They just couldn’t get his sats back up. As soon as Stacy was awake enough to realize what was happening, she jumped in and got his sats back to normal. She told the nurses to wake her up if there were any issues.

Urine catheter was removed, and he was taken off the IV pain meds. They had a heavy-duty pain med ready in case he started showing signs of being in pain or discomfort.

He was able to get into his Nap Nanny that he normally sits in when he’s at home and tried a slow feed of his regular formula. He unfortunately didn’t handle the feed well.

 

 

He was supposed to move from the PICU into a regular pediatric room, but just as they were about to transfer him, he had one of his mucus plug episodes and was struggling to breathe. He stayed in the PICU.

 

Sunday, May 26th: Recovery Day 3

Another rough day. Shortly after midnight Stacy was awoken by nurses freaking out because he was still having difficulty breathing because of that mucus plug in his throat from the day before. James was also getting worked up, which elevated his heart rate into the 140s. Stacy and all of the nurses in the room took turns suctioning, but none were successful and getting the plug. They used an Ambu bag again, and then bipap (bilevel positive airway pressure), which is a type of ventilator.

 

 

They drew some blood for analysis and his blood wasn’t oxygenating so they intubated him with a breathing tube. They had a bit of hard time intubating him we think because of the stiffness of his neck and spine, but they eventually got it.

 

 

All that happened before 3 am. Fortunately, the vent stabilized him, and he was able to get a few hours of sleep before wound care came in to remove the wound drain and change the dressing at 8:30.

 

 

 

He is going to have one hell of a scar!

As if all of that wasn’t enough for one day (or morning), they were having issues with the IVs so they opted to put in a central line so that James could get his blood pressure meds. They also gave him a blood transfusion through the central line.

An x-ray is used to confirm the proper placement of the central line. Stacy snuck a picture of one of the x-rays. Check out all the “hardware” on his spine. It looks like railroad tracks.

 

 

Now for some good news. His lungs were doing good, and they started to lower the settings on the ventilator.

 

Monday, May 27th: Recovery Day 4

James and Stacy finally got a good night of sleep.

He was taken off the blood pressure medication in the early morning but was put back on a lower dose a few hours later because his blood pressure dipped a bit.

His potassium levels were low, so they started working on getting those back up. He also hasn’t been pooping so they started working on that, too.

Ventilator settings were down to 25% and they switched him over to CPAP (continuous positive airway pressure) to help keep his airways open. Unfortunately, the breathing tube sprung a leak somewhere which caused the machine to continually beep. The only way to resolve it was to replace the tube and they didn’t want to go through that, nor did we want to put James through that again. He seemed to be doing fine with the leak, so we didn’t feel like it was something that needed to be done. The beeping did get quite annoying after a while, though.

I was sitting on the couch reading and happened to look up to see an ice cream cone walking by our room. I thought I was just tired and hallucinating. I asked Stacy if she saw it and she gave me a look like I was crazy.

I wasn’t crazy or hallucinating. It came back and asked if we wanted some ice cream. Thank you Culver’s! The last few days have been long, and this was a nice pick-me-up.

 

 

Tuesday, May 28th: Recovery Day 5

Another good night of sleep. His ventilator machine finally stopped beeping. No idea what changed, but Stacy wasn’t complaining. The nurses said he desatted a couple of times with diaper changes and positioning in the middle of the night, but that’s pretty typical for James.

He seems to be a bit swollen in some areas of his body. The started him on a diuretic to address that.

He finally pooped! It was a pretty good amount, too, but that’s not really a surprise considering this was his first poop since Thursday.

One of James’ Fans sent him a get-well gift:

 

 

He got a few IVs taken out, his blood pressure medicine was reduced again, and he was put on CPAP (continuous positive airway pressure) to see if he could do better with breathing on his own.

 

 

Wednesday, May 29th: Recovery Day 6

For today’s excitement: James had his breathing tube replaced. I apologize if I get some of the terminology wrong, but here it goes. Once they put in a breathing tube, there is a is a small balloon towards the bottom of the tube that is inflated to make sure the tube stays in place. Apparently, the balloon on James’ tube had a leak, and they knew about it when they put it in. They were hoping that it wouldn’t cause any problems, but before they took it out, they wanted to give James a chance to use a breathing tube without a hole in it. They used something called a bougie, which is a device that allows a Seldinger-like technique of intubating a patient’s airway. The device is inserted into the airway first, then an endotracheal tube is railroaded over the bougie into the airway, after which the device is removed. The anesthesiologist took out the 5.5 mm tube that James originally had and put in a 6 mm tube in about 30 seconds!

They gave him another round of the diuretic med to continue working on getting the fluid out. An x-ray showed a little bit of fluid in his left lung, so they also have him on an antibiotic.

His abdomen has gone down a bit but is still distended from the feeding they tried on Saturday. They wanted to try another feed of his regular formula again…just 10 ml over an hour. Hopefully today he will handle it better.

James got another get well soon gift delivered to the house. I didn’t see a note in the box, so we weren’t sure who it was from. After I got home from the hospital that night, I searched the box again, and found that it had slipped under the flap on the bottom of the box.

“Hi James. Hope you feel better soon!!!

From The Po___ns.”

 

 

Thursday, May 30th: Recovery Day 7

James slept good and did a great job overnight on the CPAP. They went back to the BiPAP for a bit and then to just a regular nasal canula. And the breathing tube was removed!

 

 

 

Unfortunately, his sats kept dipping during tummy time while on the nasal canula so they put him back on BiPAP before bed. The BiPAP gives him some breaths, but he does most of the breathing on his own. We need to figure out why his numbers dipped while he was on his belly. Tummy time is part of his normal routine. He has an hour on his belly before he eats to help drain his secretions.

Still on antibiotics.

Increased his feeds from 10 ml to 25 ml and seemed to be handling it.

 

Friday, May 31st: Recovery Day 8

Antibiotics

Moved from BiPAP to high-flow oxygen and was doing good.

 

 

Got him into his wheelchair to see how he’d do. He was in there for about 7 hours!

 

 

 

 

Received another mystery gift:

 

 

Saturday, June 1st: Recovery Day 9

 

Antibiotics

They were going to give him a feed in the morning but got a lot of residual food out of his g-tube from a previous feed, so they decided to hold off until later in the day. During some tummy time in the late morning his g-tube leaked. They eventually gave him a 100 ml feed over 3 hours.

 

 

Slept on his belly overnight with high-flow oxygen.

 

Sunday, June 2nd: Recovery Day 10

Last dose of antibiotics.

Was able to get a couple of feeds in today.

Sat in his wheelchair for a bit.

 

Monday, June 3rd: Recovery Day 11

Stacy woke up to the respiratory therapist giving James suction after a CPT treatment and he was double breathing. He had another mucus plug (or was it the same one?) that they were trying to clear. He gets himself all worked up, which tends to make it worse.

A music therapist stopped by to play guitar and sing to James to try to get him to calm down.

 

 

The daytime respiratory therapist came in with a cough assist machine, performed a CPT treatment and gave him a nebulizer treatment, but still couldn’t seem to get the mucus plug out. His numbers were fine, but we could tell that it was bothering him, and he was getting himself all worked up.

We couldn’t get any feeds in today. His body isn’t digesting it properly yet. This is normal for him after a surgery. We just have to keep trying.

 

Tuesday, June 4th: Recovery Day 12

Slept good last night. Minimal leaking from his g-tube, but when they did a gravity vent, about 300 ml of liquid came out. He’s not digesting, so he’s obviously not getting the nutrition he needs. They put in a PICC line (peripherally inserted central catheter) to start TPN (total parenteral nutrition) liquid feeds so he can get some nutrition.

Moved out of the PICU and over to the regular pediatric floor.

 

 

Wednesday, June 5th: Recovery Day 13

Around 1 am they gave him a gravity vent to see how much liquid was in his stomach…300 ml. Our pediatrician happened to stop by at the same time as the GI doc and they decided that the best plan of action was to do replacement fluids. What that means is that however much is coming out of his belly through the gravity vent is the amount that needs to go back in through the TPN. Hopefully in a day or two we can try to start feeds again.

The docs also want to get him off of the high flow oxygen and just stick with the humidity part of it. James doesn’t need any extra air in his body, especially his belly.

Got a suppository to see if they can get stuff moving down there.

Nurses will start venting his belly during every shift.

 

Thursday, June 6th: Recovery Day 14

Two weeks and counting. Hoping to be home next week…fingers crossed that James cooperates.

Got something like 800 ml of liquid out of his belly at 11 pm last night, and another 700 ml at 11 am today!

 

Friday, June 7th: Recovery Day 15

Poor kid. Another day of being on his belly draining the gunk out. We are now draining every 4 hours, and not every shift. Last night 750 ml came out. This morning it was about 800 ml. The amount of gunk coming out lessened throughout the day.

He kept desatting this morning and needed a little bit of oxygen, so they took an x-ray to see how his lungs looked. Both looked good.

Secretions have been crazy juicy, so he spent most of the day on his belly.

 

Saturday, June 8th: Recovery Day 16

 

Less gunk coming out of his belly today. Going to switch to draining every 8 hours.

Off oxygen and moisture to see how he does.

His secretions are still very juicy; we don’t know why.

Heart rate had been on the high side (110s – 120s) so they gave him some pain reliever before bed to see if that would bring his heart rate down.

About 300 ml was drained from his belly around midnight and they did not replace it.

 

Sunday, June 9th: Recovery Day 17

The pediatrician stopped by at 6 am on his way to the airport. He’s going on vacation for a week and wanted to make sure everything was okay and if we needed anything before he leaves. How many doctors do that?

Decided to try to give James Pedialyte instead of his regular formula to see if he would tolerate that better. Ran it at a really slow rate…5 ml per hour. He didn’t like that either. He started to get gunky, sats dropped, and his heart rate was elevated.

Everyone is brainstorming as to why James’ secretions are horrible…the worst we’ve ever had to deal with. We’re not sure if it’s GI related, because he has given us several wet diapers, so something is going through.

They were able to give him 5 ml of Pedialyte per hour from 6 PM to 6 AM Monday morning.

 

Monday, June 10th: Recovery Day 18

I hope Stacy doesn’t mind that I post this, but I thought it was important to share. Yesterday she had a bit of an emotional and mental breakdown. Recovery, be it recovery from surgery or recovery from drugs or alcohol is not just about the person that is recovering, it also affects loved ones. It’s hard on everyone. It’s okay to have a breakdown. You’re human. You can only be strong for so long before the emotional weight is just too much for you to carry. This is another reason that I’m glad that Stacy and I make a good team. I’m there to hold her while she falls apart and help her put the pieces back together. And vice versa. Neither one of us planned to raise a special needs/medically fragile/medically complicated kid. This was somebody else’s plan for us and we’re doing the best we can to give James the best life we can with his limitations. It’s hard on both of us. I’ve had my moments, too, when I just didn’t want to deal with it anymore. I’ll go for a walk or for a drive just to clear my head.

Sorry, don’t want to go off on too much of a tangent, but I just wanted to say that if you are in a similar situation than we are that it’s okay to have a breakdown every once and a while. If you didn’t, then you’re not human.

Now that that’s out of the way, let’s get back to James’ recovery…

A friend stopped by to see James and Stacy.

A friend & fan of James’ made him a special shirt:

 

 

It is going to be one hell of a scar. Too bad it’s on his back where most people will never see it. They changed the dressing this morning on his back and Stacy snapped a couple of pictures:

He seemed to handle the 5 ml per hour of Pedialyte that they ran overnight. This morning they upped it to 10 ml per hour to see how he does. The pediatrician (who is on vacation) wants to increase it to 15 or 20 ml per hour. At 4 pm they bumped it up to 15 ml per hour. To give you an idea of how little 15 ml is, it’s about 1 tablespoon. He is getting 1 tablespoon of Pedialyte per hour.

He woke up at 6 pm from a nap and was in a panic. Secretions got crazy and he had a high heart rate. We put him on his belly at around 8 pm to see if that would calm him down. It seemed to work.

 

Tuesday, June 11th: Recovery Day 19

Increased his Pedialyte intake to 20 ml per hour in the morning, and then to 25 ml per hour in the afternoon. They did take out about 300 ml of liquid out of his stomach right before they went to 25 ml, so it still doesn’t seem like he’s digesting all of it.

Spinal surgeon stopped by to check in. He encouraged us to get James into his wheelchair. He thinks it should help with GI, urine, and respiratory. “Should” is the key word there. We’re willing to try it. James has been in the hospital for almost three weeks now and we’re not sure how much longer he’ll need to be here with his digestive issues.

And why did it take almost three weeks for someone to tell us about the color changing light above James’ bed? So soothing to look at.

 

 

Wednesday, June 12th: Recovery Day 20

Started to reintroduce his regular formula today, but instead of just formula, it was a 50/50 mix with Pedialyte. It seemed to be staying in.

Family friends stopped by to see James and have lunch with Stacy. They brought James this cool light up plant, which is perfect for us. Plants don’t live too long in our house. Mainly because we forget to water them. Thankfully we don’t forget to give James water.

 

 

James’ teacher also stopped by to see him.

He did have one of his desaturation / high heart rate episodes before bed, but we’re not sure if it was related to the feedings or not.

 

Thursday, June 13th: Recovery Day 21

Today marks 21 days, or 3 full weeks, since James had his spinal fusion surgery. We don’t think James is going to be allowed to have any more surgeries after this. Stacy has pretty much been in the hospital with James 24/7 since day 1. She has been out once or twice, but that’s about it. I have been sleeping at home in a much-too-quiet house, going to work from 9 to 5, going to the hospital until 10 pm or so, driving home, and getting up to do it all over again. It has been a very long three weeks!

We do seem to be on the right path now. Today we got rid of the Pedialyte and started giving him 25 ml of full-strength formula over an hour, along with IV fluids. He seems to be handling it well so far.

Had another x-ray of his spine and it all still looks good.

Another one of his low sat / high heart rate episodes before bed. We wish we know what was causing them.

 

Friday, June 14th: Recovery Day 22

The pediatrician who is covering for our normal pediatrician while he’s on vacation stopped in to check on James Friday morning. They discussed bumping his feeds up to 75 ml over 2 hours three times a day during his normal feeding times starting today. And then bumping up again to 110 ml over 2 hours four times a day starting on Saturday. She also said that if James handles his feeds well today and tomorrow that there is a possibility that he could go home on Sunday.

Unfortunately, he did not handle the feeds well today, so we stopped them and stuck with IV fluids. Probably not going to go home on Sunday. (sad face)

 

Saturday, June 15th: Recovery Day 23

Confirmed that he will not be going home on Sunday. We’re going to backtrack a little bit and drop him back to 25 ml of formula and increase his IV fluids. He obviously can’t go home with IV fluids so until his body can tolerate enough formula and water in his tummy to keep him hydrated, he will be staying in the hospital.

 

Sunday, June 16th: Recovery Day 24

Today is Father’s Day and we were hoping that James would be coming home. It would have made a nice present to have my family back home, but we need to get his GI issues figured out first. As long as we are able to celebrate Father’s Day together, it doesn’t really matter where we are. He got some crayons from Child Life at the hospital and colored me a picture.

 

 

Monday, June 17th: Recovery Day 25

They’ve been slowly increasing his feeds over the last couple of days. His feeds were bumped up to 75 ml per hour on Friday, which he couldn’t handle so they dropped back to 25 ml per hour on Saturday. Yesterday, the went up to 28 ml per hour, and today we’re at 32 ml per hour. They are also going to stop his feeds at 10 pm to give his digestive system a bit of break before restarting them at 6 am the following morning.

He has a wound on his tailbone in the same area where he had one in November. Wound care stopped by to look at it and put a gel-like dressing on it. Something else for us to monitor.

 

Tuesday, June 18th: Recovery Day 26

Our pediatrician is back from his trip and stopped by to check on James. He wants to increase his feeds to 42 ml per hour for 3 hours, and then take a 1-hour rest before starting another feed, and no overnight feeds. Since he is getting more fluids via his formula, they are reducing his IV fluids. So far, the feeds are going good. If he continues to handle the feeds well with the little increases, we may be able to go home later this week!

Since they mentioned the possibility of going home soon, Stacy thought it would be a good idea to get him in his wheelchair to see how he does.

 

 

Wednesday, June 19th: Recovery Day 27

I think we’re getting closer to getting James (and Stacy) home. He normally “eats” 150 ml of formula over 45 minutes. Today they bumped him up to 65 ml per hour for two hours (or 130 ml), and a 2-hour break before starting the next feed. IV fluids were stopped during the day but ran overnight when he’s not eating in order to keep him hydrated.

Replaced the back bandage but didn’t touch the bandage on his tailbone wound.

 

Thursday, June 20th: Recovery Day 28

Two more increases in feeds today. Jumped up to 140 ml over 2 hours for the first couple of feeds and then 150 ml over 2 hours. Since he’s not getting IV fluids during the day, he’s getting 60-80 ml water flushes after his feeds. Still keeping IV fluids overnight.

 

Friday, June 21st: Recovery Day 29

Increased feeds to 160 ml over 2 hours with 100 ml water flush after each feed.

Fingers crossed he’s going home tomorrow!

 

Saturday, June 22nd: Recovery Day 30

Finally came home!!!

 

 

 

 

 

I was going to say that this has been the longest month ever, but then I remembered that James spent two full months in the NICU after he was born. Still, though, it has been a very long month. Stacy and James spent the month at the hospital, with a couple of exceptions when Stacy was able to get out for a little bit. While I had more freedom than they did, it was still a lot of driving back and forth for me. After driving the same route to and from the hospital every day for 30 days, I could probably do it with my eyes closed…

…and I had to do the drive one more time. When James was discharged from the hospital, they sent a prescription over to Walgreens. Shortly after we got home, Stacy got a notification from the Walgreens app that the prescription was ready for pick up. For whatever reason, they didn’t send the prescription to the Walgreens that is two blocks from our house. Nope. They sent it to the Walgreens that is down the street from the hospital. Are you freaking kidding me?! So yeah, I had to get back into the car, drive 30 minutes to pick up the prescription by the hospital, and drive another 30 minutes back home. It is what it is. I’m just glad that my family is back home.

For all of you that stopped by the hospital, sent gifts, called, texted, left comments on James’ Facebook posts, and prayed for him…THANK YOU! We love you all!

 

Follow Up

Yesterday (July 22nd) James went to see the spine doc for a follow-up. The doc said everything looks good and he no longer needs to wear a back brace, and only needs to use the neck brace when he’s in the car or on the school bus. We’ll have another follow-up appointment in six weeks.

 

 

 

 

Here is what the incision looks like two months postoperative:

 

 

I have to say that James is handling this surgery better than I thought he would…and a lot better than I would have! He really hasn’t shown any signs of pain or discomfort. He really is a rockstar when it comes to surgeries. It’s just his digestive system that is a bit problematic.

There are a couple of things that Stacy and I are working on. For one, it is a little bit different to move him from point A to point B. Because his spine is fused together, it doesn’t bend. When we lift him now, it’s a bit awkward because he’s so straight. It’s almost like picking up a 60+ pound piece of wood.

The other thing is that he has a wound on his tailbone. His tailbone has always protruded out of his back a bit, but after the spinal fusion, it is unable to flex like it used to and it seems like it’s working its way through the skin. Stacy has been really good at keeping it clean and changing the dressing on it. In hindsight, we probably should have had the doc shave it down during surgery. We’re not sure what our options are now.

Other than those two things, I think the spinal fusion will benefit James long-term. It should help him breathe better and hopefully reduce the amount of respiratory issues and hospital stays because of pneumonia.