Tuesday, June 08, 2010

We are HOME!

Oh, my! Sorry for the delay in updates. I am surprised at just how draining and tiring talking and writing about our new “normal” is. We are dealing with a whirl wind of emotions, and feelings. This roller coaster keeps going up steeper inclines, and crashing down faster than the last. I have so much to share, (and document for myself) that I think the quickest way might just be bullet points up until present day.

I still have some AWESOME pictures from Memorial Day weekend! I was editing some last night and I remembering how stressed and anxious I was for the impending cath. Oh, how I wish I could go back to that time.

The Transplant doctor has tried to reassure us that Kate is no different then she was before her cath… and I know she is still the awesome, adorable, feisty, did I mention adorable 2 year old that she was then. It’s just that now we know how very sick her heart is. We always knew her heart wasn’t “normal”. I just always hoped and prayed it would get her through. That dream is gone.

So here goes… if I miss something or you don’t understand something. Please leave a comment and either myself or Mike will do or best to answer it, or find out the answer.

Thursday June 3rd Day 3 at Children’s Continued

5:30pm FINALLY leave Children’s…they are awesome there, but let me tell you when its time for discharge…no one is QUICK!

7:00pm Arrive home, yes I know I live 15 minutes from Children’s. Red Sox day game, combined with afternoon traffic and severe downpours and thunderstorms makes our 15 minute drive an hour and a half. Still better then sitting in Children’s Arrive to her pump and IV pole on our porch… the sight of it brings the pit in my stomach to the back of my throat. New Normal… SUCKS.

7:30pm Getting Kate settled…Auntie Krissie brought Patrick home!! Boy, did we all miss that little man. Kate & Patrick played…dinner and then it was time for bed!

8:00pm Give Kate all her meds! ( up to 5 meds and a Flintstone Vitamin) Mike sets up her pump. We read bedtime stories and attempt to hook Kate up to her first feed at home. As it turns out, the fittings don’t match and we can’t hook her up. Mike and I decide to skip the night feeds and deal with it with the visiting nurse tomorrow.

8:30pm Mike and I order take out! (Can I just tell you how sick I am of TAKE OUT & Hospital Food! UGGGH!!!!)

All the Murphy’s sleep like rocks!!!

Friday June 4th

9:30am We all slept and that felt great!!! Kate & I went about our business of running errands, which of course included a trip to Target, Katy Girls favorite store! We came home and had a visit from the visiting nurse. She had new fittings for the NG tube, so we were all set that nights feed.

4:00 pm Nana came to visit and brought Katy a BIG bunch of balloons, which Katy absolutely LOVED!

6:00pm We ordered dinner in, because really who has the energy to do much more.

7:30 We got K & P ready for bed. Mike hooked up the feed again… we explained to Katy that she was attached, put her in, said our prayers and said goodnight!

7:40pm…SCREAM… Kate was SCREAMING help me, help me, Mike, my mom , and I all knew what that meant. Kate had pulled her feeding tube more than half way out… Mike had no choice, but to pull it the rest of the way out.

7:45pm Call the floor, they say call transplant, have transplant paged within three minutes the transplant doctor calls us back, he wants it put back in, call Pedi to set that up. Mike and I decide that the NG tube is not going back in since she will just pull it back out.

8:00pm talk with the Pedi on call, we leave a message to have our pediatrician call us in the morning. We get the kids resettled. I have school in the morning!

Saturday June 5th

6:45am I leave for my 10 hour school day…leaving Mike to deal with all the doctors. Mike speaks with our awesome pediatrician who called us while away at a wedding!! She agreed that putting the NG tube back in. Was not the best answer, and really not even an option.

It’s decided to enjoy the weekend… we have appointments with GI, Nutrition and Transplant on Tuesday!

Ok, so that gets you up to date… I will update about today’s appointments, once the kids are settled.



Anonymous said...

Wow what a whirlwind of emotions. I admire you for your courage and commitment to keeping those who care so much updated. Don't know what else to say other than thank you and we love you all. Erin, James, Meabh and Aoife

Vanessa P said...

Aimee - I am in awe of you! You are a wonderful mother. Be strong and courageous, and know you and your family are in my thoughts.