{ Hello! }

My name is Gavin. I am 11 months old. I was born with a genetic disorder called Alpha-1 Antitrypsin Deficiency that caused my liver to go into failure. I was misdiagnosed for 3 months and underwent emergency surgery before they found out what was wrong. I am on the Organ Donation List and am waiting for my "gift of life" so I can have a liver transplant. You can read about my story by clicking {here}. Thank you for visiting my online journal!

*It is our deepest sorrow to inform you that Gavin passed away while waiting to receive a liver transplant. He was only 14 days away from his 1st birthday. Please, if you haven't already, sign up to be a registered organ donor today and talk to your loved ones about your wishes: http://www.donatelife.net/. Thank you all so much for your love and support during this last year.

{ This is my family }

{ This is my family }

{ A Mother's Plea }

If you only read one thing on this website, let it be {this}.

Friday, May 02, 2008

We're Home!

I am so happy that Gavin got his line so quickly and without a hitch! And I am VERY VERY VERY happy that we only had to spend one night in the hospital. I seriously don't know how I'm going to survive there for 4-6 weeks. In just one night I was going nuts and ready to get the heck out of there! Why you ask? These are some reasons:

  • "she/he will come to your room in a few minutes" = she/he will be there in 1-6 hours
  • NO WIRELESS INTERNET
  • the nurse who tries to dismiss Gavin's pain, ex: "Oh, he's just making a show of it more than anything...it doesn't really hurt, its just uncomfortable" {KILL!}
  • worrying about every single person who comes into the room and touches him...did they wash their hands?! I *hate* asking people that...I feel so rude! Like, "Hey, can you wash your hands, gross diseased person? Ya, thanks."
  • the nurse who walks into your room in the dead of night and starts talking LOUDLY and chit-chatting with you like its their lunch break and wakes up the baby when you JUST got him to sleep 10 minutes before.
  • Gavin screaming crying with tears running down his cheeks when he's getting his IV in (especially when it takes more than one time) or having blood drawn :'(
  • having to bother the nurses for every little thing and feeling like the biggest PITA ever "Can I have more nipples/a clean bottle/clean blankets/more pillows/a medicine syringe/hot water/more diapers/diaper rash cream/etc"
  • his electronic monitor going off RIGHT when I finally get him to sleep.
  • its always SO LOUD!!!
  • the doctor always walks in when I'm dead asleep, pillow ridges imprinted into my cheek, no make-up and knotted hair. (not that they care what I look like, but its kind of hard to carry on a serious conversation and act respectable when you're laying in bed in your pjs like that!)
  • It takes you over 4 hours to watch one movie because you keep getting interrupted
  • having to repeat his medical history to every single person who even looks at Gavin (isn't that why he has a file?!)

Did I really just say all of that OUTLOUD??!! Sorry...I really, really, really do appreciate the fact that we have medical technology, skilled doctors, medicine, caring nurses, awesome insurance, etc. And I should be focusing more on that. We had some truly wonderful nurses caring for us, and some of them were the same ones we had back in January and they were SO excited to see Gavin again! (He took a crawl "step" in front of me and one of the nurses and we both squealed and laughed! Thanks, Nurse Maria!) Its just the hospital setting can really wear one down after awhile, and sometimes venting about it helps.

ANYWAY, all in all, it was a pretty good stay. We checked in Thursday afternoon and Gavin got a bag of FFP- fresh frozen plasma (blood product) around 10:30pm to help his blood clot. It took about an hour for that to go in, during which Andre stayed with him and I drove around for 30 minutes trying to find a store nearby that was open so I could buy some Tylenol for my killer headache! Afterwards they drew some blood to check his clotting numbers, and I got to go to sleep around midnight. I stayed overnight with him by myself so Andre wouldn't have to miss any work. Gavin woke up at 2:00am and ate a little bit, then slept from 2:30am to 7:30am (yay!) he was slightly grouchy from fasting in the morning, but they got him to the pre-op waiting area by 8:30am.

From there I walked around the pod with him because if I stopped, he got really mad at me!!! I also introduced him to bubbles (Thanks, Nurse Kayci!) which he liked for a little bit. I spoke to the OR Nurse, the Anesthesiologist, then the Pediatric Surgeon (the same one who did Gavin's exploratory surgery back in Jan, love him!)...then they took him back to the OR. I was fine while waiting...it was a pretty standard procedure, and his blood clotting numbers were almost all in the "normal" range after his plasma, so I wasn't too worried. I will admit though, that split second after the surgery is done and the surgeon walks up to you and then finally says "He's doing fine!" is absolutely terrifying!

It took about an hour and a half, then I got to go back and see him. He was screaming at the nurse holding him, but as soon as I took him he calmed down and promptly fell asleep on my chest (awww, he wuvs his mommy...can I brag about that?!) We chilled in the recovery room for about an hour and I had a good chat with the nurse (I didn't catch her name, but thanks OR Nurse!), then they took us back to his room. He stayed asleep almost all afternoon, and was in a pretty good mood when he finally woke up. He was VERY happy when Daddy walked through the door!!! :)

We had a little stumbling block when we noticed he had blood pooling up under his tape at the incision site, so one of the OR assistants came and checked it out, redressed it, and we were good to go. It was all old blood and he didn't bleed when they changed the dressing so they let us go home! We got in around 7:00pm and Gavin fell asleep again pretty soon after that.

One thing that was different this time around was Gavin caught on pretty quickly that "people in scrubs" = "owies" and he started crying and getting fussy as soon as one of the nurses tried to touch him! He wouldn't smile at them as easily either...he would just hold on to me and look at them like "You're not going to fool me, lady!!!" But since he's been poked at least once every single day this week, I'm not really surprised!

Tomorrow the Home Health Nurse is coming by to teach us how to care for the central line...thankfully all we need to really do is keep it dry and clean, and flush the line with saline once a day. They come out once a week to change the dressing (or sooner if he needs it!). I think I can handle that!


2 comments:

Melody B. said...

SO glad that everthing went even better than you had anticipated! Hopefully this line will help him gain weight and sleep better!:)

TheMoncurs said...

Yay! I'm so glad to hear that everything went well and you're home! I'll be honest, the pictures freak me out a bit, it brings back memories of my IV at the hospital *shudder* but he doesn't seem bothered by it at all!

Don't you love awesome nurses? I swear, after just a few days of the special care nursery and all the awesome nurses I was like, man, I wanna be a nurse!