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Josiah enjoyed rubbing the soap on his tummy!

We all slept well last night so that was a treat.

I was quite tired yesterday morning so I had decided that I would have a nap when my in-laws arrived around 10:00.  First, I just wanted to quickly call the hospital where I usually get Josiah's NG tubes (and have done so since last December) to ask if my parents could pick up a tube as we inserted our last one on Monday.  Last time I needed tubes they gave me two.  I was told that these tubes were a special order and they didn't have any in stock.  I said that the previous time they had gone to the paediatric ward for them so they said they'd check and call me back.  They called me back and said that there was only one left.  They were willing to give it to me but I said I wasn't going to take their last NG tube of this type (I think I regret saying that as I didn't realize at the time what a hassle it would be to get a tube).

Fun with the new bath puppet

I asked if I could order the tubes through the hospital and I was told that I should call my pharmacy.  I asked what would happen if I had to bring Josiah in for a tube change and I was told that they would use their last one on him.   I asked if they would order more and I was told that they would probably order just one because they don't use them often.  I was told that I should be getting these tubes through home care but I explained that community nurses are not allowed to order them as they are not allowed to insert them because they are weighted and they are the ones our nurse practitioner at SickKids said we should use (SickKids hospital trains parents to insert them before they leave the hospital). 

I have awesome skills! 

I called the pharmacy but their suppliers don't carry them.   I was in the middle of writing an email to our CCAC case manager when I thought I would call the company where we get our medical supplies.  They had 10 in stock.  They told me the price was around $43.  I said, "For how many?"  She answered, "For one."  Are you kidding me?!?!?  That's crazy!  I was told that CCAC may not be charged that amount but I would be as a parent.

I finished my email to the case manager and she replied right away to say that CCAC has sometimes approved these in the past.  She spoke with the nursing agency and they are going to see if they can get a special authorization.  In the meantime, I need an NG tube as that is how Josiah receives all of his medications and most of his nutrition.  She also wrote that we need to put in an application for something but said that she would ask our dietitian to initiate this so I'm under the assumption that I don't need to think about this so it is off my radar. 

I was pretty sure that SickKids would give me a couple so I emailed and I received a call to say that they would.  We asked one of Graham's cousins to pick up the tubes as she works quite close to the hospital (and she's awesome).  The tubes are already on the way to us via Expresspost.  Thank you!!!

I also called our doctor's office to ask about a fax that our dietitian sent last Friday.  The receptionist found it in a file and said she would pass it on to the doctor to then be faxed to the pharmacy.  I'll call the pharmacy on Monday to see if it arrived.

I called the pharmacy yesterday to set up a meeting for today but that timing didn't work out for them so a pharmacist answered my questions on the phone for half an hour yesterday and gave me her email address so that I could send additional information about potential vitamins for Josiah so that she can figure out when he can have the vitamin so that it won't interfere with his numerous medications.  I've been hoping that I can discontinue his 2:00 PM meds and just give them with the 3:00 meds and feed but it seems like there are three medications that shouldn't all be given together as they all decrease his blood pressure.  The pharmacist thought Josiah's blood pressure should possibly be checked regularly but suggested that I email my contacts at SickKids so I did that and it sounds like it's a good idea but they don't expect it to be a problem as he's been on the drugs so long.  I asked our visiting nurse about this today and she's going to look into whether or not she can obtain the equipment to check Josiah regularly.  After my conversation with the pharmacist I wondered if Josiah is "spaced out" at different times during the day due to his blood pressure being low.  He's usually so happy in the morning and I've assumed it's partially because he's not drugged up at that time.

I typed up the additional questions and information for the pharmacist and sent her an email.

Needless to say, I didn't nap yesterday morning.  I was heading for a nap this morning when the visiting nurse arrived so I asked her about checking Josiah's blood pressure.  I then looked to see if I had any 1 mL syringes in the box in my closet.  I was excited to find two types that must have been ordered when we returned home.  The syringes we've used since November are the ones that SickKids used for Josiah's medications the last few days of his stay.  We saved them and we wash them every night and reuse them.  We've recently discovered that there have been a few "almost medication errors" with the 1mL syringes as they show both millilitres and drops.

A couple of times a nurse has drawn up the medication using the drop measurement instead of the millilitres.  Thankfully, this is always underdosing as opposed to overdosing.  If we have a nurse until 9:00 PM, I ask them to draw up the 9:30 PM meds so a couple of times I've discovered the mistake after the nurse has left.  I originally thought this was due to one nurse's inexperience but then a very experienced nurse did this so I realized that the syringes aren't as safe as they should be.  She took responsibility right away and felt awful.  I certainly wasn't upset as I know we can all make mistakes.  It was helpful to find out that nurses in the community are not used to these syringes as they are hospital syringes.  She wrote up a note in the chart to warn other nurses and suggested that I tape up a syringe to point out the two measurements.  A nurse from church suggested that I just get new syringes through CCAC.  Great idea!  So, that's why I was checking for syringes today.

I found some which were luer-lock syringes so I thought they wouldn't work on the NG tube but in my tube research yesterday it said that they work with this type of syringe and sure enough it did.  There were also some other regular syringes that weren't luer-lock that I could use so I threw out the 1 mL hospital syringes and I was excited about decreasing the risk of errors.  Tonight I went to draw up a medication with the luer-lock syringe and then remembered why I had packed these syringes away.  The luer-lock syringe tip will not go into the stopper in the medication bottle.  The regular syringe is too small in diameter so if I turn over the medication bottle, medication spills out.  Sweet Graham retrieved the hospital syringes from the garbage (most of them were contained in a bag) and then he washed them all.  Too bad.  Now that I know it's an issue I will be sure to highlight it when I train his new nurses and I should probably tape up an example.  

I remember reading in a blog that one mother was concerned that her son would die due to a medication error.  I don't think I've thought about this as a possibility.  A few weeks ago I discovered an "almost error" with medication.  One medication had been drawn up in two different syringes, one of which was in place of another medication.  If this error hadn't been spotted, Josiah would have had six times the regular dose of one medication that affects his blood pressure.  This helped open my eyes to the potential danger, though we're not living in fear about this.  We thank God for protecting Josiah once again.  Usually we can look at Josiah's tray of meds and know if something is wrong because we are so used to the norm.     

I re-sent our nursing requests to the nursing agency yesterday as my original email had been lost.  I heard back with a number of different options and questions which Graham and I discussed last night and I sent back our responses today. 

Graham just returned from the grocery store as we were out of Pediasure for Josiah and he seems to like being fed every day. 

I just thought I'd share a few of the things that occupy my mind and my days.  I really hope this post didn't seem like one big complaining rant because it wasn't meant to be.  As I said yesterday, God is opening my eyes to see the legitimate reasons why this is a tiring season - though a blessed season as well.

Thank you for your prayers!

Blessings,

Elizabeth

Proverbs 21:13
Whoever shuts their ears to the cry of the poor will also cry out and not be answered.

Have you read: A Letter to the North American Church: Because it is Time - June 20, 2013 (Ann Voskamp)