Friday, January 18, 2013

Whew...what a journey!!

I haven't been great about keeping my blog readers up to date on our progress in Baltimore, so I will try to recap tonight before I fall asleep.

The day of the surgery went beautiful...better than expected.  We were so excited when Sam came out of surgery and went to a regular room and didn't require oxygen.  The day after the surgery all hell broke loose. Sam started the day uncomfortable but manageable and then PT came to put him into his wheelchair and things went from bad to much, much worse.  Sam struggled with over the top pain and the epidural and pain medications did not seem to touch the pain.  Sam was so uncomfortable that he was flipping and thrashing in his bed and for Jeff and I this was so difficult because we couldn't imagine that he should be moving like he was the day after having major hip surgery.  Jeff and I had all to do to restrain him from hurting himself, pulling out his catheter, removing his epidural and removing all his sponges and wound dressings.  After 1 1/2 hours of physically restraining him Jeff and I were exhausted and loosing our patience.  It's the first time I have ever wanted to call 911 while being in a hospital. Our nurse who was trying her absolute best was beside herself and unsure what else to do.  She said she had given him enough pain medication to knock over a horse but Sam didn't even seem to react to it.  What broke my heart...was to have Sam look at me and scream "Mommy help me please"...and there was nothing I could do but hang on to him, tell him I'm sorry and I love him and try to reassure him that we were going to figure something out. Minutes felt like hours and as we tried pain medication after pain medication with nothing seeming to touch Sam's pain and in the back of my mind...I keep thinking...and this is my child that has an unusually high tolerance to pain. OMG, and also shocking to my heart was the amount of blood that was now all over Sam's blankets, sheets and gown from his constant thrashing.  He probably lost more blood after surgery than he did during surgery.  As much as I had prepared myself for this surgery nothing could have prepared me for this day.  Sam began to have an allergic reaction to one of the medications and he was given Bendryl which seemed to finally knock him out.  Sam fell asleep with his body still trembling and was awful.

The night was fairly quiet and we thought we had turned a corner until it all began again at 4:00 a.m.  Jeff and I had decided we needed to continue to tag team and had camped out in Sam's room for the night.  As far as I could tell either Sam's body didn't like the epidural medicine or it wasn't working.  Due to Sam's sensory issues, we decided pulling the epidural early which would also allow the catheter to be taken out was our best bet.  We would take our chances with the oral pain medication.  This was a good decision because Sam began to calm down.

The 2nd day after surgery was no "walk in the park" either but it definitely showed signs of improvement.  By Thursday night we were feeling so confident about Sam's progress that Jeff felt he could do the night shift and allow me to get a good nights sleep at the house we are staying at.  I was physically and mentally exhausted and collapsed in bed early and fell sound asleep.  This earned Jeff tremendous points in the husband/daddy category. 

When I arrived at the hospital Friday morning Jeff and Sam were still sleeping quietly.  I began to monitor and assess Sam and noticed that his breathing seemed to be a little off.  I put the portable pulse ox on to check Sam's oxygen level and got a 55.  Oh crap...I then grabbed the hospital pulse ox and put it on and also got a 55.  This was at the same moment the doctor's came in for rounds.  They asked me what I was looking at and I told them Sam's oxygen sats were at 55.  They were sure it was an incorrect reading because he wasn't blue or looking oxygen deprived.  I simply said "Welcome to the world of Sam Mayer", Sam doesn't turn blue unless he gets in the 40's and he can actually talk and function on oxygen sats in the 50's.  They all began to move quickly when they realized the reading was accurate and as I watched them move into action, I stepped back and continued to give them some background and what will and will not work with Sam.  They wanted to put in an nasal cannula and I explained that because of Sam's sensory issues, he won't tolerate that and their best bet would be a blow by mask. They proceeded with the nasal cannula just to have Sam pull it off and throw it.  They then went for the mask and Sam settled down.  I said his stats will come up quickly but he won't be able to maintain them without some oxygen assistance.  He came back up to 100 quickly, but would desat each time the mask came off. I knew the string of questions that would come next and I calmly explained Sam's medical history and pulmonary issues.  I rationalized that because of the epidural which only affects the lower half of the body they were able to keep Sam oxygenated but when you administer heavy narcotics and muscle relaxers Sam struggles to maintain pulmonary function and will experience a medicine induced sleep apnea.  It is a fine line we walk on pain management and keeping Sam oxygenated.  Sam is still on oxygen tonight and will probably remain on it until we can get his pain medicine and muscle relaxers reduced.  Sam's oxygen sats were better when he was awake but he still tended to drop into the 70's and 80's.

But today Sam was back, he was talking, watching TV, eating and telling me "He loves me with all his heart".  We had our fights over keeping the oxygen on and he still hates anything that resembles a pulse ox but this behavior is manageable.  After the surgery he began to call his external fixator a helicopter and I have been told probably 200 times that he would like the helicopter off but he is slowly adjusting to it.  Today they had him stand with the help of 3 people and a walker.  His oxygen dropped and he had to be put back in bed but it is a start.  We are scheduled to go to re-hab instead of back to the Hackerman Patz House on Tuesday.  The rollercoaster continues...and it is now time for me to get some sleep.  Good Night everyone, thank you for all the kind thoughts and prayers and please keep those prayers coming.


  1. Sue,
    Thanks for taking the time to post an update. I have been thinking of you and Sam wondering how things were going. I am glad that Sam will stay longer at the hospital than originally planned and that you will go to re-hab prior to moving back to the house; this will provide you and Jeff additional support. The first couple of weeks after surgery are a real roller coaster, but things do get better one minute at a time, one hour at a time, one day at a time.

    Sending prayers your way,

    1. Was just thinking about you Veronica. Thank you for the prayers and reaching out if I needed to talk. This has been a crazy journey but each day is getting a little better.

  2. Sending big big prayers & positive thoughts for Sam to heal quickly & get back to normal!! Thank you so much for the update & try to rest as much as you can .. I'm with you in spirit, Sue .. God bless you n' family

  3. Dear Sue,
    Continuing to pray for you and Jeff and Sam here in KC. I wanted to share with you a quote from Hudson Taylor, "First it's impossible, then it's hard, then it's done." Sounds like you are still in the hard part. :) Sending hugs to you all!! Love ya, Jayme and Vision

  4. I've been thinking about Sam the last few days & wondering how he's doing. Still praying the surgery is successful. & wishing him a speedy recovery.


  5. I have also been praying for all of you from my little corner in Ontario. As an old orthopedic nurse, and the mom of two boys with ds, I think I can understand a little of what you are going through. God bless you! Ruth Sharpe