Wow this is repetitive

I haven't even been here a week and already getting stir crazy.  Poor Henry is stuck in this room. At least I can get up and walk around.  The nurse Kristen said we can get him up in a stroller and take him for a walk for a short time. I'll work on setting that up for later.  He is onto his low fat formula to help his fluid drain.  Less came out overnight but I don't think we are done. Tomorrow everyone meets to discuss the plan of attack.

After Henry wakes up from his nap I'll try to hold him over in the chair and show him pictures of his family.
We can't seem to work out a plan to have Polly get out here that doesn't make things harder.  Anyone willing to come out and help a little during the day?

More challenges

Well, I'm sorry to say that things got harder and not easier after his latest heart cath.  He has narrowing and low flow to his left lung. Yes the same left lung that was surrounded by fluid.  Low flow leads to blood clots.  So now he is on blood thinners to slowly break up the clots and prevent new ones.  They ballooned his left pulminary artery to increase flow that way. It wasn't a super solution but the best they can do right now.  He'll have to have another one of these to replace the balloon with a bigger one as he grows (in 6-9 months). We also have to learn to give the blood thinner shots daily similar to how a diabetic does it. AND we still have to address the fluid issue with a low fat diet.  We have our hands full allright.

Friday update

I'm not sure what to write here.  I'm unhappy that we have to be here in Seattle again.  I think after this Henry will be much stronger.  Today they are going to check out some flow issues with his heart and maybe make some adjustments where necessary. Widen here, fix there.  He continues to drain a good bit of fluid. There was probably about 350ml built up around his lung and another 100 has drained overnight.

I've been sleeping in the room with Henry which is hard but my nice roomates gave me a bunch of tips to make it more comfortable.  I moved my bed around and asked for a foam topper for my bed which really helped. Even with all that it's really hard to be here.  I think I need help.  Maybe someone could come to Seattle and help watch Henry during the day or night so I could get some breaks and sleep?  I know Polly would but that would mean bringing at least Liam over which doesn't really simplify things.

How do you entertain a baby for days on end that has all this stuff attached to him and wants to kick and play and you only have 2 lousy toys.  The TV has been the most successful at distracting him.

- Rob out -

Back in Seattle again

Today's Dr visit they found fluid accumulating around Henry's lung so we flew over to Seattle (thanks insurance!)  We're doing our best to get rested before tomorrow.  They will drain the fluid and test it to see why this might be happening. Ok, night night.

Friday and we're out!

Henry is a rock star! 4 nights in the hospital following his Glenn procedure. Dr. Hardy called the hospital this morning to get them rolling on getting us discharged.  Thanks! We spent from 6am to about 1pm getting this and that done to get out of the hospital.  Xray, blood labs, echo cardiogram, it goes on and on. Paperwork! Then finally we are out!  Henry really perked up after getting home, having a nap, eating, and sponge bath. There's pictures here. There's some from before his surgery and some after. We'll be going home Saturday or Sunday!

Henry the Happy Hypoplast

That's the name of the kids book we are thinking of writing. (Patent pending, publishers.. call me)

He's doing so amazing!  His surgery was on Monday and they are planning on discharging him tomorrow (Friday)!  All of the things that were attached to him came off so fast.  Before he even had to get annoyed with stuff.. off it came.  I'm down on the "floor" with him tonight.  He's on tylenol and oxycodone alternating and we're trying to hold off the the harder stuff.  The morphine was over with yesterday.  Seems like his pain is coming down to a manageable level.  He's pretty subdued but slowly getting more active.  I played with him tonight and he liked to play with his pacifier and his feet.

1 more night in the ICU

Only because they didn't have a room to move him too. They expect him to move today (Thursday).  He had a great day Wednesday. Really improved. He ate a bunch from me and looked around and made good eye contact.  He should be even better today! We're not over at the hospital yet since Liam was up a lot and then went back to sleep. We head over soon.