Well, OK. That's good.

Henry had his doctor appointment yesterday and he is still in Montana. No sweeping off to Seattle for us this time.  He gained some good weight and was at 13Lbs 1 oz. No reaccumulation of fluid around his lung and is eating and playing and generally happy!  So I guess he's doing great!

Also, Liam is doing great as well.  He eats a lot and is getting a little closer to sleeping through the night. Still one or two wake ups.  Lydia is great as always and likes school.

Back to the basics

Well, we've been home now for a little over a week and things are going well.  Henry is back to his happy self and plays, smiles and laughs.  He really likes to watch Lydia jump all over the place.  He goes in for his checkup today to get weighed, measured, stitches out, an ultra sound, and xray.  I'll post again when we see how he is doing.  I hope we see some weight gain and no re-accumulation of fluid and good heart function.

We are continuing our search for a nanny/helper and we might have found one.  I hope it works out because we could use some sleep and need help during the day.

Free at last

One last Xray and now we are free to go home!! Hoooray!!

Sent from my iPod

D-R-Y dry

Henry has stopped draining and they almost took the tube out today but figured one more day to be safe.  One more x-ray that looks good tomorrow and they can take it out!  So that is great news.  Then he would not have any lines or anything in him.  They didn't even place a new IV when they took his other one out.

Some back story

So here's how we think this happened. For some reason in his second
surgery part of his lymphatic system got injured. This can happen as
they are getting access to the heart to perform the surgery. This is
what caused the fluid buildup. It is called a chylus effusion. There
was also some narrowing of his left artery which reduced blood flow.
One or both of these conditions reduced the flow to his left lung
which in turn allowed clots to form. Thank goodness this was spotted
by Catherine who does his weekly ultrasounds.

No more interruptions please

Nice! Looks like the draining has slowed to a tiny amount or possibly even none. So a couple of changes for today:

• Increase the calories in his formula so he gets more nutrition and starts gaining weight again.
• "Plug" the chest tube to see if anything re-accumulates. Maybe take the tube out tomorrow?
• Switch from IV heparin to Lovanox (shots) so we can go home on that.

All in all we are making some good progress towards getting out of here. Henry is mostly back to his normal playful self.  His vocal chords got a little scratched or something so his voice is very quiet.  It's like when you lose your voice for a couple days.  Sometimes he tries to make a sound and nothing comes out... but he does make quiet little sounds when playing and can cry still.  Almost there.. go Henry!!

Allowing myself some hope

Up until now I haven't even thought about when it would be over. I knew that it would be some time and we were always waiting for the next thing which was in a day or 2. Well now we are just waiting for his chest tube to stop draining. This is now excruciatingly slow since it is the last thing we need to resolve. It seems to be improving so that is great. If he continues to do well and the formula that we've chosen is effective then maybe by then end of the week the chest tube can come out! I'm really trying to not get too excited by the prospect because I know that it can still be much longer if it just continues to trickle. Then some other options may need to be explored. So .. slow steady progress. That's good right?

Also, my sister Kelly and Katie were here for the first day today and it was nice to have them here. Katie liked playing with all the new things and Henry. She drew him a nice picture which I hung up on his crib. Tomorrow Polly and Liam are driving out here too. I can't wait to see them again even though it will be more of a challenge to balance.

That's all for the update, now off to try to sleep!

Contact info

We are out of the icu now! If anyone needs to contact us we are back in
room 4017. Best
way to get in touch with me is to call (406)546-7442 or email is quick
for me too robrbecker at gmail dot com

Break time with a happy ending

Travis and I had a nice day going around downtown Seattle.  Henry was snowed most of the day so we decided to go downtown and explore.  Then the Ronald McDonald house had some tickets to the Mariners game so we just grabbed them.  We walked around in the nice weather, shopped a little, stopped in a pub for a pint got some sushi for dinner and then walked down to the ball game.  Of course stopped at the Pyramid brewery next to the stadium before heading in.  Then we met up with the other folks from the house and watched the game.  What a day!  Could we top that off?  Well, we went over to the hospital and Henry is awake! Just hanging out and pretty happy.  I talked and sung to him and he kicked and played a little bit with his toys with me.  It was so nice to play with him again!  Also he has been eating the formula they picked out and has not thrown up since he got his breathing tube out.  Tomorrow I'm betting he will be feeling even better.  Maybe Monday we can get out of the ICU??

Henry is in the icu again

Well, the other day after we had such encouraging results from the
latest cath he crashed. He started bleeding after they repositioned
his chest tube and since he was on blood thinners it got serious fast.
Everyone jumped into action and now he is in the ICU again with more
things in him. The breathing tube is likely to come off today and then
we can start to introduce some food after a couple good hours.

He wakes up a little here and there to look around but is pretty
mellow. I sure hope that we get back to happy Henry soon.

Thank you to everyone who has sent their prayers and assistance. Teri
and Geri are leaving today. It was nice to have them here. Now Travis
is here through the weekend to keep me company. After that I'm back on
my own. Still no definite end in sight but I am guessing maybe another
week at least.

Good News!!

Henry went in to his cath again.  They had ballooned his left pulminary artery on monday and here we are on thursday in the cath again.  Well, almost all of the problems that we were worried about after that one are looking great in this latest look.  The flow to and from the lung looks much better! There are 4 clots that we are addressing with blood thinners and are improving and not getting worse. That's awesome! I'm so relieved to see his heart function looking so well.

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.