Monday, October 22, 2012

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!


Dana said...

Wonderful photos. So glad you can slow down and enjoy rather than just survive. I wish you many more days of peace and fun. Glad Jack is smiling again.

Also I cannot put into words very well about what you are dealing with with his heart. I am sorry you have to take this path in the journey.

I am STILL in Awe of you. I know we don't like when people put us up there. However, you give me courage, hope, and someone to walk with.

Take Care and kiss Jack for me.

Eric said...

Ann I've put your pictures as desktop wallpaper to enjoy them, especially since here we only have two seasons: Summer and spring (our summers are probably the same!). Wow am I jealous that you could get out for the hike, all those beautiful colours. I keep wanting to take Segev up north in the "winter" so that he can breath clean fresh air but it always seems a bit too complicated. Perhaps this year.
About the hospital reports, I would have thought you would already have encountered that. It's common practice; there is always an immediate post-op report done which then gets 'revised' and expanded upon, all the rough edges smoothed over, any crises downplayed, which goes to his chart/folder. Eventually the original post-op report finds its way to the archives, unless it doesn't, which I have personally seen on several occasions when I worked in a hospital. "We broke the ulnar bone while setting the radius", that kind of thing. Segev's original birth report, which I made sure to look at and memorize despite the drama then, disappeared, to be replaced by a completely sanitized version. It's kind of like the penciled in DNR's when I worked in hospital. Some were there at the request of family, without any official channels or recourse and some were from the doctors (this was in the late 80's).
As if we didn't have enough to worry about, right?
Very happy for you that your son is feeling better, but then, 'I told you so' ;)

ssouth said...

Your phone pictures are amazing. I downloaded camera +, but don't see a vibrant setting. I'll have to explore more. I'm glad things are settling down a bit. It's crazy how records never seem to paint the same picture as the reality we lived. It always makes me question my memory and when new docs meet Ben in person, they are always shocked because he looks much more serious on paper. I'm glad you got to enjoy some fall, it's been beautiful here. Love you!

Sarah said...

Sundance film festival here you come!!

Susan said...

WOW! Those pictures are gorgeous! I'm really glad you had a nice weekend Ann, you so deserve it! I've seen the same thing with OR reports, things that weren't discussed. I would have thought they would tell you about that event. We parents of medically complex kids should get "all the info" in order to best manage our kid's medical care. I hope to see happy Jack pictures soon. Thanks for stopping by the blog and leaving a comment. XOXO Susan

Melisande said...

You both needed a good week! Great pics, Ann!! Hugs!!