This Week...

***I wrote this post over the weekend and I am now just publishing it. FYI if you subscribe to posts via email they will often post to your email a day later.  Enjoy!***

This week, it felt like a century!

Last weekend, Father's Day weekend, began with Drew declaring that he wanted his parking spot back.  In other words,  the eight yards of mulch that has been sitting at the end of our driveway since the end of April was getting moved.  Reality, four yards spread, four more still to go.  Sleep was practically extinct last weekend as Miss Lucy's issues kept us on our toes.

Sunday night was not a great night for our girl and come Monday morning three of our four kiddos had to be up and out the door by 7:30am for camp.  FYI, Monday morning was the only morning all week that the kids did not need to be shaken awake.

Lucy had PT later on Monday morning which did not go very well.  Lucy was pretty much out of it and sleepy.  Afterward our infusion nurse came to see us around noon for his weekly visit.  After taking a set of vitals he looked at me and said, "...so, when are you bringing her in?".   Lucy's vital signs were not her norm nor was her neurological status, in all honesty it she had been like this for a while.  I sent a quick email to the good doc and asked him to call me, minutes later I flew out the door at 1:30pm to pick the kids up from camp, leaving Lucy with our nurse.

The good doc and I finally connected a little before 3pm, apparently he tried calling our home while I was out picking up the kids.  I first told him that Luc was breathing and her heart was beating, to which he jokingly said, "...then in my book she's fine".  However Lucy's vitals were showing the symptoms of Cushing's triad, which warranted a trip to the ED for a stat head CT.  I asked him if I should pack a bag, his response was, "Don't you always have a bag packed?".  Stat as in I had to first pack up eight hours worth of meds and supplies, throw some essential survival things in my hospital suitcase, and call my husband out of a meeting to tell him what was up.  I had to find someone to watch my other three kids, and wait for the girls to finish getting their hair cut which was occurring simultaneously in our kitchen as I was scrambling around doing said things.  Last, but certainly not least, pack a sleeping Lucy up, get her and her wheelchair in the van, and drive her to DuPont all before 4pm because a certain Dr. R was trying to leave around then to coach a baseball game.  Yeah, I told him 4pm was going to be pushing it, but I would try my best.  For the record, we arrived at the hospital around 4:40pm and it was storming so game cancelled.  Dr. R came to see us and before we could even see him we heard him saying, "if she tells me to go home then I'm sending her home:)".  I said if back to him, "if she tells you to go home, I will gladly take her home".  Lucy has been known to tell him where to go a few times in her life :).  Sadly she didn't really wake up when she saw him.

Not sure what exactly we were going to do for our girl, we were admitted to our usual unit in the hospital sometime around 11pm Monday night.  Apparently Lucy picked a busy night to be admitted.  The night resident had the overwhelming task of putting all of Lucy's med orders into the system.  Needless to say there weren't any meds sent over from pharmacy until after 1am.  To quote the good doc yet again, "Lucy has more meds than Walgreen's"!

Tuesday morning came early as did morning rounds.  Dr. R and I had a heart to heart that I detailed a little about in my previous post. Our reality...it's painful!

Drew came the hospital late Tuesday morning after dropping the kids off at camp and swinging back home to gather more meds, supplies and TPN so that we could take Lucy home.  We signed the discharge papers Tuesday afternoon after our urology team came up and changed Lucy's surpapubic catheter bedside.

It was pouring rain when we were leaving the hospital which didn't help our excessive fatigue.  Instead of going back to the office Drew and I met at home, transferred Lucy to her bed, and we all crashed hard!  Fear not our other kids were in good hands, on my way home I called my dear friend Alicia and asked her if she could keep the big kids for a few more hours.  Being tired, it goes along with this so called crazy life, but seriously I have never seen my husband so tired in all of our years together(23 years collectively).  He blamed it on the mulching :).

When I picked the kids up at 7:00pm they were wiped out from Wipe Out Camp. Sophie was beyond tired and lo and behold I discovered that she also had a fever.  She later confessed to me that she did not feel good all day, but did not want to bother anyone about it.   Poor girl, she and I both felt awful!

On the short drive home from Alicia's there was a flood of tears from everyone.  Not sure if it was the combination of fatigue, hunger, and stress of the past few days but suddenly everyone was crying about how they missed the "old Lucy" the way she used to be...all I could say was, "me too"!

Wednesday morning everyone was up and out the door early, except of course for Lucy, and Sophie too as she still had a fever.  I put Sophie on "isolation" and told her she had to stay in her room and then handed her an iPad.  She was the happiest febrile kid on isolation I had ever seen :).  Later Wednesday morning Lucy lost her first tooth!  Her two bottom teeth have been loose for awhile, that's what having very little calcium in your diet will do to you, but also she is the age for having loose teeth.  Without going into any detail, her loose tooth prompted a need for a gj-tube change Wednesday afternoon.  Seriously, we had to pack up her up and take this show back on the road to DuPont.  But not before first picking up the kids from camp and making arrangements with one of our favorite child life workers at the hospital to sit with them while Luc, her nurse, and I went to interventional radiology.  FYI by noon Sophie's fever was a thing of the past and she was hungry, all good signs that things had improved.

On Thursday we celebrated fifteen years of marriage, the weather was gorgeous!  While the kids were at camp we packed up our sleepy girl and took her and her mobile ICU on walk (oh yes we did!) at Longwood Gardens, my favorite date place!  This deserves a post of its own, but I know I won't have the time to give to it so I will just say that I can't imagine spending my life with anyone else.  Life is good, not easy, but good!

We were able to squeeze in a dinner date on Thursday for our anniversary, sushi.  On Friday night we had a "date" at Costco, not my favorite date place.  Drew always likes to say to me when were at Costco, "Hey babe, I'll buy you dinner...", very funny.  Cheap date, aah not really when you tally in our $400.00 grocery receipt.

Drew took the end of the week off to celebrate our anniversary and to also get some things done around here, like spreading mulch:).  By Monday I think he was ready to go back to his job and leave me to do mine.  While driving home from Costco Friday night we commented that this has been the longest week, it's felt like a century, but then realized that we still had the weekend.