Tuesday, May 6, 2014

A little update...

Let me set the scene for you: It’s Sunday, May 4th, around 7:30 p.m. (may the fourth be with you:))   I’m Sitting on my lil’ perch here in Alec’s hospital room looking outside the east window toward our beautiful mountains while Alec is sitting in a chair across from me.  He has a salmon color sweatshirt on with some handsome eyeglasses and compression socks. Oh! And pants! Haha! I forgot about that very important detail.  The compression socks are great because they are open toe so you can wear flip-flops if you choose to. (One of the bonuses of being a guest in this hospital I guess:)

 Alec just rang the nurse to order some room service (i.e. bring milk, and change bed linens).  I have decided this place is sort of like a hotel (I’m not sure Alec can say the same thing about it since he’s a patient here). There is a gorgeous view of the mountains, soccer and baseball diamonds from your window. There are people coming in to clean your room everyday, put your massaging leg sock things on and giving you fluids through IV’s so you don't have to even use your mouth if you don't want to. One draw back (of many I suppose) is that it's a minimum stay of $1,000 bucks a night and "you usually have to be half-dead to get a reservation"-so says Alec Rampton.

 We are as happy as you can be I guess when you have had to stay in the hospital for 2 and a half weeks.  Honestly though, It brings me great comfort (and him too I think) knowing that he is watched over 24/7 by the nurses and Doctors.  

I had been sleeping over here for a good portion of the first two weeks while my mom stayed at our house watching Miles and our dog. I have managed to get
some great sleep too! Last year after spending nights here w/Alec, Alec's nurse wheeled me down to the E.R. for back spasms and pain.  Nothing a good ole' morphine shot & muscle relaxant can't fix!  But I've wised up since then and was able to nab (with permission of course) an unoccupied patient mattress from another room and put it on the floor here in Alec's room. Unfortunately, that didn't last very long because a legitimate patient needed it. Something about being sick or something? So then, my nurses wheeled out a cot that had been in the closet  or something and I took the mattress off the super springy  springs and placed it on top of the couch pad. Thus, calling it "my perch."  The funny thing is that on a couple of occasions, the P.A.s (physician assistants) would come in and say, "Hey, I think so-and-so takes naps on a cot  like that in our office."  We would laugh and say, "It is their cot haha!" Apparently, there's only one girl on their transplant team short enough to actually fit on
it anyway so we didn't feel all thaaat bad.

Anyhow. . . . Alec is doing great.  I mean, he looks good, his voice is strong and he’s funny as can be.  That's how I really can tell if he feels good. . .if he can still get his funny on. And he can.  He has such a light hearted and happy personality that he really is a joy to be around even if he is uncomfortable. What is sweet, is what a nurse told me in the hallway the other day: "I have been trying to be your guys'  nurse but you guy's are the most requested patients here on this floor!"  First of all, I love how I am apart of the request.  I love that they view Alec and I as one, b/c I think that has been our strong suit. . .just making a great team.  Second of all, I'm not entirely sure that our competition is all that hot. But still, flattery is flattery. Because, come on, seriously, how could anyone not like Alec Rampton?  (Seinfeld quote from Mrs. Seinfeld about her son: "How could anyone not like my Jerry?")

                                                                                                                                                                                                We are grateful for the nurses that we have befriended here as they are the ones who really set the tone for Alec and myself. We laugh with them, cry occasionally, laugh some more, and reminisce on the times in high school when our Pre-frontal Cortexes  weren't formed (still aren't) and  we caused mischief by throwing snowballs, pouring ketchup and mustard packets on friends cars, and leaving items in lunch sacks on porches (you know what I mean, although I never did it:).  I realize that this letter may be passed around further than our immediate family, so do what you have to, roll your eyes, judge, what ever you need to as you are not required to love us unconditionally.

 All in all, Alec is far better off here than he is at home.  He feels a vast improvement in his energy as they have monitored blood levels, potassium, and all the other smart stuff that we couldn't monitor ourselves to get him feeling better. Keyword being: BETTER.  Because let's face it, he still feels like crap (sorry again grandmas) But, we will get there, he will get there soon.  Still just waiting patiently for the perfect liver to join his body and get in on the fun.

In the last month we have received a total of 6 possible organ donations.  The first 3 offers came as  “back-up” offers.  Which means that Alec was not the first in line to receive it, but perhaps second or third.  If the candidate in front of him weren’t compatible with the donated liver (i.e. too big, too small, not healthiest match, etc.) it would then go to the “back-up.”  The next 2 times we were the primary candidate. In the first go around, we were obviously relieved and excited that an organ had become available and was headed Alec’s way. Everything seemed to be going smoothly, but after several biopsies and a close physical inspection, cirrhosis was found in the liver. So, no go!  The second offer that came in ended up being too large of an organ to fit in Alec’s body, plus it was very fatty. Just yesterday he got another offer as a back-up but it went to it’s primary candidate which we are always happy for because it usually means they needed it more, and we hope others will feel the same when Alec gets his as a primary candidate. 
Our transplant team of clinical doctors, surgeons, and P.A.’s are an amazing group who have been working their tails off to get Alec the best possible liver.  They really care for him and love us and we love them for their hard work but also their endearing personalities.  They have made what could be a very difficult situation much easier to handle, and we have complete confidence in them and their abilities to get the best possible liver for Alec.The docs have really improved Alec's health while being here.  He is better now than he has been in the last couple of months due to the constant care, fluids, meds, treatment plans, etc. that they have been administering.  It still is just a band-aid though as they are working hard everyday to get this kid a liver transplant.  He is sitting pretty though with a good meld score.  Hopefully we will hear about more offers this week.

We will continue to do our best to keep you posted on Alec’s progress.  Right now his MELD score (position on the liver candidate recipient list) is rising again and with a higher score more opportunities should come his way. We love you all and are grateful for each way you have strengthened us through this.  We are optimistic that a happy ending is near and that is thanks to all of you.

1 comment:

  1. Thank you for updating us on this matter. He is a really strong kid and I can see that he is recovering fast. Wishing him a happy and healthy life ahead.