What A Difference A Week Can Make

Last week I was tired and feeling down and Jack was feeling blah and unsmiling.  This weekend, Jack seemed to turn a corner. He was happy, smiling, not requiring non-stop suctioning and clearly feeling so much better.  I had enough energy to get things done around the house on Saturday and then head up North for a few hours of hiking on Sunday, capped off by a birthday party at my house last night for all the October birthdays in my family.  I fell into bed last night feeling tired for good reasons and, for the first time in a long time, felt like I had enjoyed my weekend rather than just survived it.

I'll take it.  Jack and I are both due.

We have upcoming appointments with the new (potential) pediatrician and with the nephrologist. Other than that, I don't care to see the inside of a hospital or doctor's office for many months to come.  I am so done.  Typically, Jack sees his Phoenix doctors about once a year, at best.  I think it's time to get back to that schedule. I still need to decide whether we are going to have cardiology locally follow Jack or if we make the dreaded trip back to St. Louis again next year.  This is how I explained it to Jack's neurologist when she asked how our trip home went:

We made it home safe and sound vowing that we cannot make this trip ever again - which we say every year and, yet, cannot stay away from the superb care and amazing friendship SLCH provides.  

I also added:

 I really need to get someone to document our travels though - it would make for a compelling reality show.  I don't think anyone can truly fathom all that is involved in transporting Jack across county. But it is so worth it.

In any event, I'm not even going to contemplate what we are doing next year until at least next year.  And next time we make the trip, I've got to find a way to document it.  You'll either find it compelling or determine we are crazy and need to be committed.

On a side note, I requested and received in the mail this weekend copies of Jack's reports from cardiology. I only requested his echo report and the report that is sent to Jack's pediatrician from this last visit. They sent me all his records/reports going back to 2005.  Very interesting reading.  But, I was a bit shocked when I read the report that was sent to Jack's pediatrician in 2005 - the year the cardiothoracic surgeon placed a pericardial patch between Jack's trachea and aorta to create a barrier in the event Jack's trach tube should ever erode through his trachea (Jack has a right aortic arch and his aorta is located right next to his trachea and if his trach tube were to erode through his trachea it would hit his aorta -- not a good thing).  The report included this statement:

"Of note, during the median sternotomy, the innominate vein was lacerated resulting in a brief period of hypovolemic hypoperfusion which required volume resuscitation."

I'm thinking if this was "of note" to Jack's pediatrician, it should have been "of note" to his parents as well and should have been shared with us by the surgeon when he came out to talk with us after surgery.  It was not.  Okay, so it happened 7 years ago and Jack survived, but it really makes you wonder how much information is not shared with parents and, but for me getting copies of all Jack's reports, summaries, records, etc., I'd be in the dark about a lot of things when it comes to Jack.  You don't know what questions to ask when you don't have all the information.  It's annoying to say the least.

Anyway ....

I'll work on getting some updated pictures of my "Happy Jack".  In the meantime - for those not on Facebook - here are a few of my favorite pictures from my hike (with my sister, Maureen) up North in Oak Creek Canyon.  The Fall colors were abundant.

Have a great week friends!