I just never imagined when we checked Cannon into the hospital on Monday, that we would be where we are tonight.  Having to make the decisions we have had to make today…..

When I last updated you…..things weren’t going the way they usually do.  IV’s and NG’s were giving us headaches….but we thought we had it all worked out.  The NG has worked fine since we got the 2nd one put in.  Cannon is working on his 3rd gallon of Go Lytely solution as I type but the x-ray is still not clear.  So, he will have to continue with the medicine until he is.

However, the IV that we were so excited to find in his hand…..blew this morning but not while it was being looked at or drawn from.  The nurse had just checked on it 20 minutes prior and commented that it wasn’t flushing well when she gave him his scheduled Valium dose through the tube.  She got a call for another patient and said she would be right back to untape it and readjust.  Well, in the meantime, Cannon got really, really agitated.  He had been having a very hard time for the last day and a half but this was different.  Our nurse had called the docs already that morning and told them that he needed some help.  They said they were checking out and to let the day team handle it.  Grrrr!  But I reached a breaking point with him and hit my call button for help.  He had been fighting me and screaming for too long and I was in tears and done.  Which is exactly what I told the nurse when she responded.  She went and called them again and came back to check the IV.  When she removed the wrap and tape, she discovered that the 2nd IV in the coveted spot had blown.  And all the fluid that had been pumped in during the last 20 minutes was pooling in his hand.  I almost got sick when I saw it.  His poor little hand was swollen to at least 3 times its normal size.  And he was in pain!!!!  We began treatment immediately which was Motrin, lots of saline soaked gauze wrapped around his hand, lots of dressing changes, and constant elevation for at least 6-12 hours.  At bedtime tonight, his hand was only about half as swollen.  I have been assured it will be better soon.  🙁

Backing up to Wednesday…..now that was a rough one.  The “results” of the Go Lytely kept us up most of the night and he woke up for good at 2 a.m.  And screamed ALL DAY LONG.  I really can’t remember a time when he stopped for more than a few minutes.  And unfortunately there was a doc on who wasn’t familiar with Cannon and who didn’t want to follow the plan we had in place.  She thought Benadryl might help his agitation instead of Valium.  UGH!  Our valiant nurse fought all day and finally got her to listen but he was so far gone by that point that the small dose that was prescribed did very little.  Mark and I were talking about it and we think it was actually the worst day we have ever had in the hospital with him from a behavior standpoint.  And that, my friends, is saying a lot.  Not fun!

So, when Thursday began with the IV infiltration by 7 a.m., I was not optimistic this day was going to be any better.  But it turned out to be manageable thanks to the “wising up” that had occurred in the doctor yesterday.  (Who was back on today.)  The Valium was also back on schedule and therefore Cannon’s pain was better managed and he coped fairly well.  Mark and I were able to go to a special lunch given by a group that supports chronically ill children and families.  Our WONDERFUL nurses and techs watched BOTH of our boys so we could go.  It was really nice to be away for a few minutes, discuss the next steps for us in a quiet place, and meet other parents in similar but different situations.  There were mom’s in there with kiddos who’d had heart transplants, kidney transplants, cancer, and severe disabilities with related grave medical issues.  It was so therapeutic to go through a guided discussion with them about how we are all coping in our various situations.  We are so thankful we got to pop in.  LOVE OUR CARING, BEAUTIFUL NURSES!  I think it really relaxed me going into our surgery consult.

The surgeon came by at 2 and talked with us about the 2 (yes 2) potential surgeries.  With the 2nd IV of the visit blown, the need for access via a port was very real.   So, we have given into the idea of putting in that port.  For those of you who don’t know what that is…..here is Wikipedia’s definition……

“In medicine, a port (or portacath) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical “needle stick”.

The port is usually inserted in the upper chest, just below the clavicle or collar bone, leaving the patient’s hands free.”

Cannon will have surgery tomorrow around lunchtime to have this implanted.

The biggest decision of the day was whether or not to do the Chait Button that I mentioned in my last post.  The one the only 3 pediatric surgeons in town had all refused to do a year ago.  Because of their concerns about him pulling it out due to his severe sensory issues.  We had really grown to respect the surgeon who we consulted with last year and were amazed at his “cut last” attitude when it came to Cannon.  He wanted to test and biopsy him for all the 1% chance kind of things before he even considered it.  And when it came to make that decision, he chose to think of Cannon, the person, and decline.  I remember he said that it would be better for him to be in the hospital every couple of months for clean outs than for him to potentially live in constant, sensory pain, and for us to all live in constant fear or him pulling it out and needing emergency surgery.  And we felt confident in his decision.

But due to the gravity of the situation we now face, they have flip flopped.  They feel we have no other choice and really must go ahead with the surgery.  Our G.I. doc spoke with them and told them that their is absolutely not one more thing to try.  No meds, therapies, diet changes, etc.  And we reluctantly agreed and consented to all of their wisdom.  The comforting thing is that we are working on a couple of ideas that could make this thing go more smoothly.  They are going to use a different button than originally planned.  They feel that the spiral tube underneath the Chait Button is too risky and are going to modify a Mic Key Button instead.  The latter are designed with kids in mind and will not have the severe surgical ramifications if they are pulled out.  I will talk more about this closer to time.  The other thought our G.I. doc had was to call a local company that makes prosthetics and orthotics and see if they can design and make us something that could go over it to prevent him from pulling it out.  Or at least make it harder for him to do so. I got a script from one of the docs, called, and set up an appointment for them to come by the hospital for a consult tomorrow.  It looks positive so far.  Like they think it could happen.  We will see.

Like I said before, I never ever imagined this week would play out the way it has.  We could never have predicted the inability of Cannon’s veins to cooperate….now forcing us into the port.  And that all the docs would change their minds and decide it was time to take the most drastic of measures and install the button.  But it is what it is and we realize its time.  Our knees are raw.  We have prayed and received peace in this decision.  It IS the right timing and the right move.

Now, that does not mean we are not sad.  I struggled mightily this a.m. when his IV infiltrated.    And right after the surgeon left.  I don’t want this at all!  But we put it in God’s hands, HE has answered, and we have to accept HIS answer.  HE created Cannon and loves him.  HE will protect our baby.  I believe it with all my heart.  In those sad moments today, I retreated to the melody and lyrics of this particular song.  It came to me immediately in my grief.  And encouraged me that it was okay to be sad.  That even if all I can muster is a broken hallelujah…..that doesn’t mean that I am in the wrong or less of a Christian.  I was created to need God and there is no doubt that I will need HIM now.  The days ahead are so scary to me.  We are implanting 2 foreign devises into the body of my 5 YEAR OLD.  But I choose trust in this moment.  I choose to believe in what I cannot see because I have faith.  I have experienced God’s love and provision in the past and I know HE will not let me down now.  Please enjoy this beautiful song and the message.  Cry…its okay.  But trust….because HE IS.  God bless!