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One down. One more to go.

April 20, 2015

We woke up bright and early last Wednesday morning and made our way to Riley Hospital for Haven’s first rodding surgery.  Shortly after arriving at the hospital, we were escorted up to the pre-op room where they immediately began preparing Haven for the procedure.  At around 9:00, the surgeon came in to speak to us one last time before heading to the operating room.  After going through the procedure once again with her, we prepared to say our goodbyes to Haven. They decided to give him some anxiety-reducing meds so that he would be relaxed as they wheeled him away.  Well, let me tell you…those meds worked : )  And they worked FAST!  As we put him down on the bed to head down to the operating room, he started giggling uncontrollably. And he had all of us – nurses and docs included – laughing with him!  It gave us some much-needed comic relief during that difficult moment.  No tears at all from any of us.  We simply planted a few kisses on his giggling face and told him that we loved him.  Then, off he went….

The day started off really well, and we were all feeling at peace about what was about to happen.

As soon as they wheeled Haven away, we packed up our stuff and headed to the family waiting room for the long six-hour wait.  Every hour, there was a nurse who would walk around the large waiting room and give updates to all of the anxious families that filled the room.  Her job was to simply float back and forth between the operating room and the waiting room to communicate how all of the procedures were going.

Late in the afternoon, we finally received the wonderful news that Haven’s surgery was complete, and that we could head to the consultation room to speak to the surgeon before heading to the recovery room to see him.

During that conversation, we learned that the surgeon had encountered some unforeseen difficulties during the procedure. Haven’s bone quality was so poor and his bones were so thin that she wasn’t able to fit two rods (dual Rush Rods) into each of them – as planned. So, she could only fit one rod into each bone. She was able to use a single Rush Rod through his tibia. But, since his femur was in such bad shape, she couldn’t even use a single Rush Rod. She had to resort to using a thin titanium elastic nail.  She said there were some areas in his femur where there was no canal at all for her to place a rod through, so she actually had to drill a canal in order to make the rodding procedure possible. Ugh.

We also found out during that conversation that she had put him in a hip spica cast, even though the plan was just to splint him. Those casts are so uncomfortable, and they are not.fun.at.all.  But, she told us that she had to resort to a cast to add further stability during the healing process. 

Needless to say, we were pretty bummed to hear all of those things from her.

But, the surgeon reassured us that Haven badly needed to have this procedure done, and that even though the dual Rush Rods were a no-go, the rodding procedure should prove to be very, very beneficial to him. It wasn’t exactly what we were hoping to hear from her, but it was a successful surgery. And, judging from the x-rays that she showed to us, she had done an amazing job of straightening his bones. Her task wasn’t an easy one.  But, from what we could see on the initial x-rays, she was able to get those bones of his nice and straight and successfully insert the rods/nails into them for added stability. 

Going into this surgery, we had been told that the recovery process would be a very painful one. Boy, were they right.

We thought we were prepared for that. Boy, were we wrong.

The night of the surgery ended up being terribly rough for Haven. His leg swelled up so badly that they had to cut open his cast to relieve some pressure. His pain was out of control. He got sick a couple of times due to the pain and the incessant crying. He only slept for about an hour the entire night, and spent the rest of the night whimpering and weeping. As I sat there in the dark with him during those long hours, all I could think about was just how ugly Osteogenesis Imperfecta is. What that disease has done to our little boy’s body is so, so ugly.

The following day, he finally started getting little pockets of rest, and his pain level seemed to go down a bit. He began eating/drinking a little bit more, and he even flashed a few smiles at us. He still had some significant swelling, though, and didn’t like to be touched or moved at all. He was very, very sore. We knew that we wouldn’t be heading home with him that night due to his pain level and the amount of swelling he was experiencing.

Bryan was kind enough to offer to take the night shift on the second night so that I could go home and get some rest.  I hadn’t slept a wink the previous night, so the thought of catching several hours of sleep in my own bed sounded really wonderful. While I did hate leaving Haven that night, I knew that his daddy would take great care of him, and that he was in really good hands.  That put my mind at ease, for sure.

When I arrived at the hospital the following morning, Bryan told me that Haven had slept really well despite the fact that someone came into the room every hour to poke and prod him.  He also said that he was starting to smile a little bit more and seemed to be more comfortable than the previous day.

Things were moving in the right direction.

But, we were not pleased at all with how they had placed the cast on Haven’s body.

Why?

1)  They left it unfinished.  It wasn’t wrapped nicely and neatly like the previous two spica casts he has had to endure.  We were told that they would finish it off sometime before he left the hospital.  We were not pleased at all to hear this.  Why on earth would you not finish the casting process while he was anesthetized?  Why on earth would you put him through the re-wrapping process while he is awake and very, very sore due to the major surgery that he just had to endure?  We tried not to get too angry…trusting that there MUST be a reasonable explanation behind this decision.  Unfortunately, we found out that there wasn’t a reasonable explanation. The decision had everything to do with the fact that casting a child while under anesthetic can take up operating room time. What?  We couldn’t believe that that was the reasoning behind the decision.  Apparently, each surgeon has a different philosophy when it comes to casting in the operating room.  The previous two times that Haven headed into the operating room (with different surgeons) to have his broken femurs set, he came out with a nicely finished cast on.  How we wish that he had come out this time with it finished as well.

2)  It was too tight.  Due to the swelling that Haven experienced, the pelvic band that wrapped around his stomach was so tight that it was clearly causing him abdominal discomfort.  We expressed our concerns with the medical staff.  Thankfully, the ortho doctor who was on-call during Haven’s hospital stay agreed with us, and so did the nurses. So, for the second time in a matter of hours, they pulled out the loud/scary cast saw and cut the pelvic band of his cast right down the middle to give him more space.  So, not only did they have to split the cast down the leg due to his swelling during his first night after surgery.  They also had to split the pelvic band.  Both times, Haven screamed and screamed.  In addition to those two cuts, the ortho doctor also cut off some of the edges along the waist and near the hip because the unfinished edges were cutting into his skin. We were so very frustrated that Haven had to go through this additional trauma when ALL of it could have been prevented had they placed the cast on his body more appropriately and finished it off while he was fast asleep on the operating table

3)  The cloth padding was a nightmare.  The padding that they put in between the hard casting material and Haven’s skin got instantly jammed up into the cast after his first diaper change post-surgery.  There was no gauze to cover the cloth to hold it in place (like a properly finished cast would have had), so each time we would stuff the back of his diaper up into the back portion of the cast, the cloth would move up, too.  It got jammed in there and we couldn’t move the diaper up as high as it needed to be.  Sooooo….as you can imagine, each time he peed in his diaper, the urine would make its way up his back. After about the third time of this happening, the cloth and his cast began smelling pretty wretched.  Plus, the saturated cloth wasn’t able to dry out since it was stuffed inside of his cast.  So, he had wet, stinky cloth stuck to his back.  Sound comfortable?  Not in the least.  We ended up pulling and cutting a lot of the cloth padding out completely.  Of course, it was yellow and soaked in urine.  Who on earth would want that stuck to their back all day long?  We took out as much as we could and then did our best to wrap the cast on the back portion with an ace bandage so that the hard edges of the cast wouldn’t irritate his skin. It was totally ridiculous that we even had to resort to such a thing.  But, we did.

Despite the fact that his cast was causing him so much trouble (in addition to the pain and discomfort of the surgery itself), Haven started acting a little bit more like himself with each hour that passed.  So, just after lunch on Friday, we were told that we could pack up our things and head home!

With prescriptions for two strong pain meds in hand, we wheeled our belongings and little Haven out of our room.  As soon as we got out into the hallway, it was like he had instantly come back to life. He started babbling again…waving at nurses as we walked by…and smiling.  Clearly, he knew that he was about to go home.

Since coming home, he has been progressing really, really well.  He is sleeping great and we are continuing to manage his pain with the meds that they sent home with us.  Tonight, we were even able to take him off one of them because he was acting so much better.

We head back to the cast clinic on Thursday to finally have his cast finished/re-wrapped. Yes, they had promised us that they would re-wrap it while we were in the hospital.  However, the swelling was just too bad, and he was too uncomfortable.  So, they decided to wait a few days for his discomfort to go away before they would tackle the finishing process. This, of course, means an additional trip to the hospital for us.  An additional trip that could have been avoided – had they simply spent 15 minutes to place it properly and finish it off in the operating room.  Grrrrr.

What a long week it has been.

But, despite all of the unexpected complications that we have encountered, we are ceaselessly thanking God for bringing Haven through this surgery and for giving the surgeon a sharp mind and skilled hands to perform such a delicate and difficult procedure.  We look forward to seeing how this surgery (and the following one in May) will impact his life.  We hope and pray that they will be life-changing for him.

We cannot thank everyone enough for the support and the prayers during this time. Those prayers sustained us during what ended up being some of the hardest days that we’ve had so far as a family.

Our prayer now is that Haven will heal from this procedure quickly and fully, and that next month’s procedure on his right leg will go more smoothly than it did with his left leg.  May that surgery be a very successful one…with less pain, less discomfort, and zero complications.

We continue to cover our sweet boy in prayer.  And we humbly ask that you would do the same.

Thank you all so much ♥

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3 Comments leave one →
  1. Ram permalink
    April 20, 2015 10:14 am

    I am so happy for the good news and that Haven is allright… I thought a lot about you. Sorry about the cast problems. Maybe next time you’ll tell them about these unpleasant issues and they will be able to prevent them from the start.
    Speedy recovery, Haven!

    • Ram permalink
      April 20, 2015 10:17 am

      I am so happy for the good news and that Haven is allright… I thought a lot about you. Sorry about the cast problems. Maybe next time you’ll tell them about these unpleasant issues and they will be able to prevent them from the start.
      Speedy recovery, Haven!
      ps: He is so sweet in the fourth picture!

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