Saturday, November 14, 2015

CT Children's MS7 night nurse, you will not be forgotten!

      This blog is titled "My Beautiful Life...with ms".  So, maybe it should strictly pertain to MS?  Then again, it  is my blog.  So....
       As some of you know, my 3 1/2 year old daughter had heart surgery on Monday.  It was a routine & planned surgery to repair a common defect.  She was diagnosed with this Sinus Venous defect in her Superior Vena Cava and Atrial Septal defect in utero.  So, we have known about it since then.  The cardiac surgeons were just waiting until she was big enough to repair it.  We have had almost 4 years to get acquainted with the idea of this surgical repair.  Monday was her surgery day at CT Childrens Medical Center.  I can most surely say, with 110% positivity, that we were NOT expecting that.  WOW.  We got used to hearing friends with the same repetitive statements "I can imagine" or "Everything will be OK" or "It must be stressful".   Unless you have had a child having open heart surgery or brain surgery or in a major life threatening accident I can assure you, you have NO idea. Not that other issues aren't important and scary, but this took stress as we knew it to a completely different level.
      When you become a parent you take on this whole other burden of fear and protection over your child.  Your stomach almost drops out when they trip, fall, are away from you, break something, etc...   Now, you parents, think of sitting in a waiting room for 5 hours knowing your child is a few doors down in a huge operating room filled with about 20 people, many many machines, bags of emergency blood,  and your child...lying there... with their chest open and heart stopped and emptied of blood while the surgeon works to repair a hole in the tiny space of a vein leading to the heart.  I knew for 4 of those hours that I would never have my daughter back and if I did that one of those many "very rare complications" would leave her unable to breathe on her own or walk or without the ability for her body to control its own heartbeat. Her surgery ended and she was still(miraculously, in my mind) alive.  We rushed into the PICU room just as she was waking up.
 We were NOT expecting that either...what she looked like.  She was still on the pacemaker because her heart was still "disoriented".  She had catheters everywhere, in 3 limbs and her neck, some venous and some arterial as well as a central line.  She had the pacemaker and heart monitor probes taped all over, a urinary catheter.  She had a (way bigger incision that we were prepared for) down her chest and a chest tube coming out of her abdomen under the incision to drain fluid from her heart.  My god!!  I must say, CCMC and doctors (Dr Salazar & Dr  Bernstein), surgeons(Dr Kirshbom), nurses(Jill Sullivan((you should have a page of your own right up there with the Docs)) & too many more to name) and staff were amazing.  There are so many little details of the amazing things they did, like let Amelia drive a little Barbie Escalade down the hall before surgery.  Child Life  provided some amazing services that really cheered up Amelia and helped speed her recovery ( a Harp player came to her room, a Craft Cart came by each day and left crafts and stickers and such.  They even sent a Golden Doodle around to visit the kids).  We did have a cheer up squad of our own as well (Our friend Jim and the Hartford Fire Department came by with a truck and gifts, she got flowers from her Aunt and Grammie, etc...) She actually rebounded quite fast and each day preceding the surgery some other line or drain was pulled and soon she was allowed to leave the PICU and transfer to MS7, a "regular care" floor.


 Along with leaving all our fantastic PICU Docs and nurses behind....we also left the fantastic care behind.  I will keep this part short (there are SO many details I would just love to include but won't).  I will just say, to the MS7 Night Nurse on duty November 12, you will unfortunately not be forgotten.  As we recall memories from this ordeal and stay at CCMC the fact is that the care from this nurse and lackadaisical atmosphere from the entire MS7 floor, in general, will overshadow those amazing people at CCMC.  Sadly, the positive of this story is it prompted us to want to bring Amelia home.  I just couldn't handle one more night of holding her down for procedures, blood draws, x-rays, meds, etc...  So, hesitantly, we headed home....less than 2 full days after double bypass surgery.
    We have been home for less than 24 hours.  Amelia is doing amazingly wonderful..and so are we.  There's nothing like home to make you feel better.   I did not want to be discluded from being in any room anywhere with Amelia.  So, I left Crane at home for this hospital trip.  I had to navigate busy hospital corridors, cafeterias, elevators, procedure rooms and more without the help of my Service Dog.  I have had a few incidents lately that have unfortunately left me not very confident in the public to react appropriately in regards to her (here is a good article:http://www.anythingpawsable.com/things-service-dogs-public/#.Vkdwn3arTIU).  So, along with not having her,  the fact I got about 10 hrs sleep(split up over 3 1/2 days) and was under an amazing amount of stress....I was really appreciative to be home in my comfortable, predictable environment.  All of those factors: unfamiliar environment, stress and lack of sleep are not at all ideal for people with MS.  I am very surprised my body didn't just shut down.  Then again, it knew something was going on in my life that just was more important than it at that time.
    So here we are, at home. Surgery was done 4 days ago.  Amelia is on nothing more than diuretic and motrin. We do have 6 to 8 weeks of follow-up tests, doctors appointments, keeping her healthy and rested.  However, She is ready (and trying) to take on the world and we are almost ready as well!