A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Tuesday, July 29, 2014

A New Day

So sleeping in a hospital room/couch sucks. Even with my own blanket and pillow from home. And no matter how quiet the nurses try to be I still wake up when the door opens.
I left the TV going (with no sound) so Nick would have something on if he wakes up.
And when I went to cath him in the middle of the night he was wide awake. So I left him with the TV and went back to sleep.

The dressing we put on helped, it gave enough pressure in his belly button to keep it from bleeding through. And so we we didn't have a to change his gown after our midnight (but that was gown #5)

Nick slept most of the night (probably a result of the morphine they gave him). And the team of doctors came in around 730 am, with his new nurse. (A male nurse that Nick has really liked).
We had decided to give him some morphine in the morning, because we knew that they would be coming to poke at his belly. And I didn't want a repeat of the night before.
It worked, he still wasn't happy, but he wasn't the crying and screaming in pain boy he was the night before.

This is what his belly button looks like under the dressing. (I hope it doesn't gross anyone out)
The blue tube is going through the appendix, to keep it open. I think it is some kind of foley catheter. Everything is clamped off so nothing is going in or coming out.
In the middle of the belly button looks like it is all blood. Some of it is blood, but some of the red is the lining of the appendix. It is where they connected the appendix with the skin that it is oozing blood. This is what was oozing blood and what they have been trying to put pressure on to stop bleeding.

This morning they did a bunch of stuff to stop the oozing.
Pressure... didn't work. A liquid solution with epinepherine to constrict the vessels to stop bleeding, the dribbled it on with a syringe and IV needle tube to get it right where it is supposed to go... didn't work. They got glue that they put all around it to seal it up.. didn't work, but did slow it down.
Once it started to slow down they decided to leave the glue and put surgicel netting on it, then a small gauze and a small strip of tape. The last resort option was to put in local freezing and then put a stitch or two.
(Flash-back from Nick's original back repair surgery where they had the exact same problem with a part of his incision leaking fluid and needing a couple of stitches)
Nick wasn't happy with everything, but he coped really good and just a bit of distraction was enough for him (and some tylenol/advil afterwards, but we had given him morphine as preparation for this too)
He was trying to smile... this is as far as he got

After people stopped poking at his belly Nick felt a lot better. He said that he was hungry so we ordered him some food. He didn't really eat very much (1/2 of a sausage and 2 bites of pancake and a sip of chocolate milk).
Afterwards it was time to start to get moving.
24 hours in bed, even if I got him moving side to side (which hurt) and moving his knees up and down (which didn't hurt), he had still been in bed for 24 hours.

We sat at the side of the bed first. My parents were here for a visit and so the 2 of us got him sitting. He's little, but with me trying to move him myself it was hurting his belly. We did that for a bit. I blew bubbles and Nick let them fall all over him. He blew bubbles, leaning forward to get to the wand.
He got tired quickly and said his belly started to hurt, so we lied him back down and let him have a break and watch some TV (teenage mutant ninja turtles DVD).

Then it was time for some more tylenol, and some pizza lunch (he ate about 1/4 of it). And ate all of the chocolate pudding, as long as I gave it to him. He will eat if he needs to, he just has no desire to eat if he isn't made to.

Afterwards we got a couple of smiles

Nick is still working on drinking. He is a horrible drinker and one little water bottle has taken all day to drink. In the meantime this IV stays in place. He hasn't been moving his fingers so I've been working on that to prevent them from swelling up.

Then it was back up in the chair and we did some board games. He won. (Against mommy, grandma and Michaelgelo)

As the day has gone by I see Nick improving more and more. We've stood at the side of the bed, did a couple of (well supported) steps. And we've been trying to get him out of the bed for small amounts of time. He is starting to want to get up and onto the couch or the playroom... which is a huge improvement from this morning
... There is a real smile!

The docs have come in and talked about discharging home, but I really feel we need another night to make sure that everything is going well. Even though we have been on the up-swing all day. He just spent 24 hours in bed with an oozing belly button, I don't want to end up home in his bed with the same thing.

We've been pushing him to move more, and the dressing has stayed clean. Which is fantastic! But we haven't had him moving to his full potential yet, and I want to make sure that that won't cause more bleeding.

We will have teaching and a plan, and tylenol/advil for pain once we are at home.
Other than dealing with the dressings we haven't done any flushing at all. We are waiting for the nurse practitioner who will see us tomorrow.
Hoping for a very uneventful night!

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