At Witts End (Scoliosis)

Hello All,

This is Neil once again.  I feel April’s first post-operative blog post will be coming soon, but not yet.  You are all stuck with me for a little while longer.

Scoliosis

About a day after April’s initial surgery, the 11 hour scoliosis surgery that feels like a lifetime ago, April had excruciating headaches, dizzy spells, blurred and double vision, and some real bad nausea. All of these symptoms would amplify as her head would raise.  She would have a bad headache lying down, a real bad headache sitting and standing was nearly impossible because she would have to keep her eyes closed because the room would be spinning and she would see double, plus the terrible headache on top of everything would make her so nauseous should would need to lay down.

This lasted up until her emergency bowel resection.  After her bowel resection she was basically laying in bed for a couple of days so she did not notice headaches, but she still had double and blurred vision.  As the days passsed, her vision restored and her headaches diminished.

While April was having these symptoms, I was concerned April had a dural tear and that her cerebral spinal fluid (CSF) was leaking out of her spinal cord.  All of her symptoms are consistent with a CSF leak, but after her emergency surgery and her headaches lessened I put that thought to the back of my mind.

After all of her scans, X-rays, MRI and CT had been done on those days before I asked for copies of everything including the reports that went with them.  I read them and I was concerned.  April’s headaches had been better, but they would always present themselves when she would do her PT.  I spoke with April’s doctor and told her my concerns that her headaches had persisted and that I was worried about a dural leak.  April’s post-operative MRI and CT scans even showed a large Serena in her deep lumbar area, near where her spinal cord was damaged.  The doctor was a little concerned as well and thought that a test called a Myelogram would be the best way to see what is going on.

A myelogram is done by a neuro radiologist.  A person lays on their stomach and under direct X-ray the doctor places a long thin needle into the spinal column and then injects a dye to be seen on a CT scan.  The idea is that if there is a leak the dye would leave the spinal cord area and you would be able to see on the scan where the dye is leaving.

So yesterday afternoon April was transported up to radiology and  I went with her.  I was only allowed to stay with April up until they were ready to start the procedure.  She had to be on her stomach and I was concerned because she just had her bowel surgery and a fresh wound on her abdomen.  April literally just told the doctor, hurry up and let’s get this done.  Before they positioned her on her stomach I had to leave the room so I did not see how she was doing.  I can only imagine that this part was painful.  I have never had abdominal surgery, but those who have or mothers who have had a c-section, I can only assume that they did not want to lay on their stomachs a week after there procedure.  A little bit more than an hour passed and I was let back into the room to see April shaking in pain and in tears from the pain.  She told me while on her stomach and when the doctor was putting in the needle and injecting the dye her right leg literally started jumping around uncontrollably and the pain was unbearable.  She said she was yelling for him to stop and was scratching at the bed she was laying in.  April said her leg was now a combination of on fire and tingling numb.  She was terrified because this is her good leg.  She was scared that now both of her legs would be screwed up.  The doctor said that this should go away, it was most likely the pressure from the dye on one of her nerve roots and as the dye moved along the canal and the pressure went away her leg would feel better, hopefully.

After a minute or so laying in agonizing pain they transferred April over to CT.  They had her roll side to side so that the dye would disperse evenly.  Approximately 10 minutes had passed since she left the X-ray for CT and April said that the pain in her leg was starting to lessen and some of the feeling was coming back.  I had a huge sigh of relief and so did April.  The CT scan was relatively quick and painless lasting only about 10 minutes and afterward she was transferred back to her room.

Laying in the CT machine

As April was being put back into her bed I called for the nurse because April was more than an hour overdue on her pain meds and she was in some bad pain.  In the room we talked about how terrible that experience was and I still have no idea how she did it.  She ordered some food and as her food arrived, literally as the food was put in front of her, the nurse received a phone call from CT saying April needed to come back for another scan.  After a few expletives under my breath I put on a happy face for my wife and they transported her back to CT.  Thank the lord they only needed to do another quick CT scan because if they wanted to inject more dye I am not sure that would have been possible.

The CT was quick and in less than 10 minutes we were back on our way to the room and April finally ate.  After she ate we decided to FaceTime the kids.  We have four kids and the only time we have been apart from them has been when April gave birth to one of their siblings.  This whole experience has taken its toll on April physically, but I think even more emotionally.  Our oldest two have visited but the two young ones have not seen her since July 4th and April just broke down on FaceTime and had to pass the iPad to me.  Emma’s birthday is tomorrow and we have never missed a birthday so when April was watching the 18 month old play in the background and Emma asked, “Mommy will you be home for my birthday?” She lost it.  She tried to hold it together but just couldn’t help but cry so I took over the FaceTime and put on a strong face and told Emma we will have a little birthday party in our hospital room.

I get to leave during the days and go to work. Sometimes with all the call I take I won’t see the kids for a couple days, but April is with them all day, everyday and for her to not see them at all for 16, almost 17, days now is worse than any pain she has been through.

After our FaceTime with the kids there was some good news.  April was told she could take a shower, an actual shower.  The nurse taped off her incision with some plastic, put on a plastic sleeve over her PICC line in her arm and then I helped her to the bench in the shower.   This was her first shower in over two weeks.  I washed her hair for her and helped comb out the knots.  I could tell when we were finished she did feel a little bit better.  Feeling clean and refreshed was a positive way to end that night after a physically and emotionally draining day.

Incision after the shower

This morning we found out the results of April’s myelogram.  Thankfully the results showed no leak, but I know in my gut, truly without a doubt in my mind that she had leak, but since it had been so long it walled itself off and hopefully it is okay now.  I will continue to monitor her, as well as, the doctors going forward and I hope this is the end of that.  April has such a long road ahead of her with rehabing her back and leg that at least this is something off the table for now.

Tomorrow is Emma’s birthday and I decided to have the family all come out here so April can see everyone and watch Emma blow out candles and open some presents.  I think seeing all the kids will make a huge difference and will be a positive emotional experience.   She has spent so much time in the hospital sitting and laying around it is impossible not to dwell on her left leg and all the possible scenarios of what will happen going forward.  At this point anything that keeps her mind off of this reality for a few moments is very much needed.

The team teaching April to walk again

What happens when you aren’t able to eat for 12 days

FINALLY!!!!!!!!!