Thursday, August 19, 2010

getting better....

The boys are still sick, but don't tell them. Night time is rough with a lot of restlessness, coughing and oxygen alarm beeping but during the day you would hardly know it. They are getting their appetites back, playing hard and looking adorable as ever!!! But don't take my word for it:

Nicholas jabbering away on another "phone"

I just can't get enough of it, he loves to look for my reaction
as he finds yet another "phone" and puts it against his ear.
If you could only see Alex's face here but let me try to translate:
"you DO realize you are talking to a caterpillar, don't you?"

Alex looking as sweet as ever.
He's working so hard on sitting up all by himself
haven't quite gotten the fixing our other leg yet
mama was slacking here
but were getting there!!!

look past the ugly white medical tape
its the only thing that sort of helps keep 
the oxygen in place and doesn't make
his poor skin break out....

Alex saw his cardiologist yesterday just for a routine follow up. We talked about his recent illness and he listened to him and agreed sounded like he has viral pneumonia. He had an EKG done and some other testing. They said he still has pulmonary hypertension but it IS improving. One part of his heart is still enlarged but he said he did not expect to see otherwise yet, that this can talk many months or even more to decrease but that its not getting worse.

He said the tests were indicative that things are continuing on course as he'd expect and does not recommend any other treatment. Alex will just need to be followed every six months for now. :) I really like his cardiologist and he is very reassuring without even be prompted. He said not to get discouraged about the illness and respiratory issues. He reminded us that the first year or two are the hardest with his lungs but it WILL get better. He said his ability to grow healthy lung tissue is directly related to his physical size so he's still quite small now but that as he grows, so will healthy lung tissue to replace the scarring. We needed this reminder as we worry ofcourse while we listen to his breathing and going through another pneumonia. We already have one year behind us and he's already doing so much better and we know is so much stronger than times past. We know things could be soooo much worse and we are grateful for how well he's doing and being able to get through this at home and not the hospital. Thanks to every one for the extra prayers for both boys speedy recoveries, we feel them working!!

Monday, August 16, 2010

Another adventure

We made it back from another camping adventure. This time our expectations were much higher. We survived the first expedition so well, we'd be old pros this time around, right?

It should have been a clue when only five minutes in, coming out of the camper I missed the stair completely and twisted my ankle. It throbbed for that first night and I was worried I really hurt it, but nope--just got off on the wrong foot (sorry couldn't help that one). Any way it was just a sign of things to come this weekend.

Alex actually had started to spit up a day or so before our getting going. He has never been our spitter upper so we were keeping an eye on him but nothing that we were very alarmed about. He was acting fine otherwise. Except on the way to our destination, he spit up some more. and again after dinner there. We just figured he likes to eat and he over did it. But then Nicholas started. hmmmm....then out of nowhere the noses started to run and the coughing came soon after. This was all within our first few hours at camp. We were a bit disappointed that the boys were under the weather but we figured we could handle a couple of colds and still make the best of things. The boys were still for the most part in good moods.

Well the night went quite sleeplessly for our little ones, much coughing and sneezing and crying. The cry that happens approximately every hour or so and says "I"m tired but don't feel good" cry. After about 1:30am we figured we were probably not making many friends with our neighbor campers and we brought Nicholas into our bed with us to try to comfort him. Alex at this point seemed to be sleeping better. It was a long night. Long story short the boys did okay in the morning but both were starting to lose their appetite, noses were running and it was clear that we needed to pack up and get home for everyone to get some much needed rest (mostly the other campers) we are still waiting to get that rest, ha,ha.

Well don't get me wrong, even though it wasn't one of our best weekends, we still managed to steal some great moments before heading home.

Nicholas loved finding new things to stand and walk around

and some extra time with Daddy is always a hit!!!

They got some time with Grandma and Grandpa too who 
had already planned on driving down for the day to play,
and ended up being a much needed extra set of hands
while mommy and daddy packed up. 

Alex sure thought Daddy's chair was comfy!

But he decided Grandma's lap was even better!

even starting to feel crummy, he's adorable!!
Well doing the whole packing up, unpacking at camp and packing up again to unpack once we got home is exhausting. Doing ALL of that in less than 24 hours time on very little sleep, ugh is all I have left. 

I did wonder if maybe we were being premature packing up to come home so soon but not long after we got home I realized we made the right decision. The boys really started to fall apart and it was clear that they were fighting more than a cold. It was another tough night for the boys (and their parents). Alex's oxygen alarm kept sounding and we ended up increasing his oxygen two different times during the night and had that pit in your stomach kind of feeling that says "been here, done that, and think were back again." and by the time we got them up the next morning, Alex sounded terrible and was acting very lethargic, refusing to take his routine medicines or any part of a bottle or breakfast. We got an appointment with our on call doctor and she didn't like the sound of his lungs either or the way he was acting. She gave him a dose of steroids and some albuterol and had us wait in the office a half hour to listen to his lungs again. Luckily it was already starting to help and he drank a half a bottle of pedialyte and was acting peppier.

She agreed to let us continue doing the steroids, nebulizers every 3-4 hours and an antiobitic to ward off any bacteria that might possibly grow in his lungs. By this point, we had already increased his oxygen level by four times his normal bed time amount and we would just have to continue monitoring him. We were just grateful that they didn't try to push us into taking him to the hospital.  Unfortunately we kind of feel like old hats at this and felt strongly as long as he would drink more and take his medicine, we could take better care for him at home and he could get the rest he needed to get better quickly.

The great news is he already seems to be improving. He's eating and drinking better and acting more and more like his old self. His lungs still sound gunky in between the treatments but we have already been able to wean him down one level of his oxygen during the day (knock on wood) so we are hopeful that he can beat this more quickly than times past. He's bigger and stronger now and hopefully his lungs are a bit more too. 

He has not been able to get off of the oxygen entirely since his last pneumonia back in March but at least he had not required any during the day time in several months. We are not sure how this will impact his sleep study scheduled just two weeks from now but I'm praying he will just rebound very quickly and this will all be a miner set back in the grand scheme of things.

Nicholas is already almost back to his old self. He loves the new "toys" around the house. Neither were very mobile the last time we had to have oxygen cords and monitor sensors strewn throughout the house so this is fun, fun, fun. Nicholas really doesn't understand the big deal on pulling and chewing on all the new "strings"; from his vantage point, I'm sure it looks like Alex is having all the fun.....Alex gets to have the cords on him without getting yelled at, and the mask thing blowing cool steam every few hours....and yummy pink looking stuff to drink twice a day. The grass isn't always as green as it looks on the other side my sweet Nicholas! Oh well, he'll learn that sooner than I'd like I"m sure.

We are enjoying this time with the boys. They are growing so fast. Every one has always said how fast time goes, and somehow having children really amplifies that. I feel like a broken record but it is shocking how quickly the time is going. I don't really want to hold back time entirely, I really enjoy watching them figure out new things, tentatively at first and looking back to see where we are and if were watching. Their world is so small right now and we are right there in the center of it, makes you feel so important, so critical....until you realize your trumped by the cat walking into the room. Oh well. such is life.

Here's a few pics before the weekend that I really like....

"I don't think I"m getting good reception mama"
(Everything is a phone right now)

these ones of Alex were taken with my phone but I just love them!!