Home Sweet Home Away From Home!

Ben’s fever resolved itself at about 4:00 a.m.   Ben continues to have fast shallow breathing, but it could be related to his pain.  He woke up this morning with a significant amount of pain, and we worked with the Acute Pain Management team at MCH to try to make him comfortable.  Benjamin was given his own P.C.A post op (patient controlled analgesic), which is a device that administers a dose of morphine when the patient presses a button (dial-a-drug).  There are limitations on how much it will dose out over a certain amount of time to keep him from overdosing, and it is generally a great way to monitor a patient’s pain levels.  Even if it doesn’t administer a dose, the nurses can see how many times he has pressed the button, which is a good indication of pain levels.  We talk to Ben about pain and use the pain faces to rate his pain on a scale of 1 to 10, and Ben is encouraged to use his button anywhere from 2-4.  We try not to let it get past 5.  Unfortunately, Ben seems to be acting like a little cowboy.  He constantly says he is at a 0 for pain, then I notice him grimacing or not moving at all, which is a clear indication of pain.  When he does use the button we ask him what his pain level was at and he says 10, which is an unacceptable amount of pain.  We have now passed the control of his button over to his nurses AT THE SHRINERS!!!  Woooohooo!  We’re back!!!!!!!!

I have to say this in a way to help you understand our joy in returning…I don’t even think joy is a strong enough word – maybe ecstasy, but I didn’t use that because of all the drug talk and double connotations .  I believe that what we received over at MCH was an acceptable level of care for a patient.  I think it represents the normal care that patients receive from most hospitals in Canada  – keep in mind that we were in ICU with 1 nurse per patient nursing or at times 1 nurse per 2 patient nursing.  Having said that, when we transferred over and I saw one of our nurses standing in the secure corridor that connects the two hospitals, my eyes teared up and I quickened my pace.  “That’s Jean-Francois” I said excitedly to no one in particular.  He led us through the hallway, and we went to our floor.  I could hear all the staff saying “Benjamin’s back!”  or “Benji’s back” (his new pet name).  My eyes continued to fill with tears.  There was a team of three of our nurses waiting for us and although they said hi and greeted us warmly, they were all business in taking care of Ben.  I looked over at one of the nurses not working on Ben and gestured with my hands on my heart mouthing ‘I am so happy to be back’.  At this point I started to cry; I was so overwhelmed with gratitude and joy to be back with this amazing team of people.  I pulled myself into the washroom for a few minutes to compose myself  while the team began to assess and do the intake on Ben with a combination of professionalism and kindness that is beyond words.  Not only were they able to quickly assess Ben’s medical needs, they went beyond to ensure that his comfort was beyond pain management.  Teddy bears were wrapped around air masks, fuzzy bunnies were used to hold his arms comfortably, and warms cloths were used to wipe away the traces of our surgery.  Diapers were replaced with tarzans, and doors were shut to protect dignity.  He wasn’t just taken care of – he was nurtured; he was loved.  I don’t know how a parent can thank people enough for that; it’s overwhelming.  When Shriners raised money to build this hospital, their mandate was to provide exceptional care to children (www.exceptionalcare4children.ca), and I can assure you that they absolutely do this and so much more.  It’s not just their amazing nursing team; it’s their doctors, teachers, nurse’s aids, unit clerks, child life specialists, nutritionists, social workers; administrators, coordinators, receptionists, security guards, chefs….it’s just everyone…everywhere!   I am so grateful that our crooked journey landed us in this amazing place.  Tonight I will sleep and rest well knowing my child (who is pretty amazing himself) is receiving the ultimate recovery experience  Let the healing begin!

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8 thoughts on “Home Sweet Home Away From Home!

  1. I hear you!!!!! so glad to hear you have returned to the care of the number one team! So know the feeling!
    My very best to Ben. You are both heroes!!!

  2. What an emotional journey! So glad to hear Ben pulled through but hope the pain level diminishes very soon. We are all hoping for a quick recovery.

    Elaine Engerdahl

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