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Thursday, March 25, 2010

Thankful Thursday and an Owee Update

OK, so I know that we didn't spend that much time in the hospital. We have definitely spent more time there before. Somehow it doesn't matter how long you spend in the hospital, it always feels like so much longer. The nights in the emergency room felt like days! One night the nurse sat with us all night long and wouldn't stop talking. She sat by our bedside staring at us. It was a very strange experience that did not included any chance of sleep. The next night we spent about an hour in the triage bed because there were no rooms for us, but he was too sick to be in the waiting room. That pretty much stunk! Just behind the curtain in the hall was a guy on a bed who complained the entire time about what terrible service there was in the ER and how his issue was more important than all the other people that were there. Not sure what his issue was, I think it was his inability to stop complaining. The guy in the bed next to him had spent the night before in the ER of another hospital and when they told him he was fine, he decided he need to wait until the next night to prove they were wrong. I did figure out what was wrong with him, but even though both ER's told him the exact same thing he didn't seem to think that the issue he started having as soon as he started taking a prescription that causes shortness of breath, was the cause of his shortness of breath.

After we finally made it to another room in the ER they took more blood, gave him some more breathing treatments and disappeared. At least we got to sleep. After we made it to the room and got settled in, I climbed up into Owain's crib, cuddled up with him and passed out for about 2 hours. The next 24 hours were a bit of a blur, but as far as hospital stays go, it wasn't all that bad. Owee was very sick and it drove me crazy that I couldn't manage it on my own. They were aggressive with his treatments, I didn't even know that epinephrine came in nebulizer form, but it did the job and got his breathing under control. His pediatrician is an amazing woman.

So now my little Owee is doing much better, he is still on nebulizer treatments every 4-5 hours throughout the day, and has started sleeping through the night again. He had his follow up visit with his Dr. yesterday and he is doing great. Still a bit of fluid in one of his ears, and a little yuck in his chest, but for the most part he is doing great! He is back to his happy, alphabet singing, random babbling, chatty little self. I am so very, very Thankful for that!

Do you remember when Owain had his peds cardiology check up in December? And I mentioned that there was good news and bad news? Remember that I promised an update and that I would fill you in on all of that? And then I didn't. I wasn't happy about the bad news. It was upsetting. I have been trying to deal with it. The good news was that he was growing, his heart looked great, his echo was good, ekg was good, overall he was "healthy". The bad news was that his O2 sats were dropping faster than we all had hoped. He went from the 88-89 in January to 78-82 by December. And if his O2 sats kept dropping like that, his surgery would be sooner rather than later. I was not happy about that. We want him to be older and bigger when he has the next surgery, The Fontan, because this surgery does not use his own tissue, it will be synthetic, I think maybe gortex like his first surgery. I worry that if he is too young when he has this last surgery, that he will need to have it done again when he gets older, that he might outgrow it. Anyways, I was ignoring the whole situation, trying to pretend that we wouldn't be heading in to surgery, very possibly before the end of this year. I glossed over, ignored it and basically tried to pretend that it wasn't happening.

Just as I was embracing denial, the craziest thing happened. When we took him in for his January Synagis shot (a monthly preventive med for high risk babies to protect them from RSV) his O2 sats were 94! Really! 94. He never hit ninety-four. Ever. Not even after his Glenn Procedure in October 2008. Not even on 100% oxygen. This totally blew me away. The nurse double checked it. And then she counted his heart rate and it matched the heart rate on the pulse ox. His oxygen was at ninety-four percent. So strange. So very good, but so very strange.

I don't even remember what it was exactly in February, but it was in the high 80's again. Even when he was in the hospital, he was in the high 70's to low 80's at his sickest. As things cleared up and we got him off the oxygen, we took him home and his O2 was back into the mid 80's. That is such an amazing turnaround, for him to be sick, having trouble breathing and to still be in the mid 80's when he was spending more time in the 70's at the end of last year.

Yesterday when he had is follow up visit, we pulled out the pulse ox and he was back up into the 90's again. Still, I find it so hard to believe. And the best part you know what the best part is? Can you guess it? If things keep going like this, if he keeps his O2 sats up in the 90's and even in the 80's like they have been for the past couple of months, Owain will not need surgery sooner, but definitely later, and most likely much later. It is all about his O2 levels and how strong his heart is. His heart is strong, he has the "good" ventricle. He has the ventricle that you want if you are only going to have one ventricle.

For now we can go back to thinking about surgery sometime in the close, but not too close future. We made it through 2009 with no surgery and it looks like we will make it through 2010 without surgery as well. Of course I know that with him, anything can happen, but I am not trying to think about the "anything" that could happen. I am thinking about the things that are not happening, like the fact that he is not in the 70's anymore, and sometimes he is not in the 80's any more. I am thinking about the fact that he is doing well, that he is growing, is "healthy" and not having surgery anytime soon.

I am bubbling over here, the excitement is overflowing. I am so very, very Thankful for my little Owee's high O2 sats.

Owain's pediatrician mentioned that he might have asthma and that we were going to look into that more, but for now, all is good and we are one happy Nut House!

I am also Thankful that I have finally caught up on some sleep and am starting to be a morning person again. I have gotten up before my children for the past two days...and that hasn't happened in months.

I am Thankful for spoonfuls of Nutella, warm afternoons, muddy kids playing outside and for my ability to ignore the monsterous pile of laundry that lays in wait, ready to attack me every time it I get close to it.

As always, I am Thankful for my happy, healthy, wild little beasties that run around my house all day long driving me crazy, I am Thankful that my husband has a job, we have a roof over our heads and for our wonderfully supportive group of friends and family and all the ways they help us.

So what are you Thankful for today? It is so easy to join in and tell everyone.

Here is how Thankful Thursdays works:

1. Post your Thankful Thoughts on your blog. Somewhere in your post please mention Welcome to the Nut House and/or so that your friends, family and visitors know where to find other Thankful Thoughts. You can also grab my Thankful Thursdays banner and link to that. Once you have done that you can come back here and add your post to MckLinky.

Not every one has a blog, so:

2. If you don't have a blog, you can leave a Thankful Thoughts comment in the comment section.

3. You can show your Thankful Thoughts any way you like, as a list, as a story, as one word, one sentence or just a picture.

Have fun!


Kristine said...

I am so thankful, too. That's great news. I get said thinking of and little Owain in the ER and in the scary hospital. Hospitals are scary, but you are home and safe and sound, and surgery is most likely way down the line. It's a thankful Thursday for sure.

Jamie H said...

Such great news! Hope his sats don't get too high though-not that they can make them any lower if he's breathing room air! Too high sats could flood his lungs. I'd be happy with mid 80s to very low 90s! Sooo glad surgery is not in the near future! Asthma you can deal with, surgery is a whole other ball game. Just wait till after his Fontan though--his sats will be near 100%! He'll be pinker than you've ever seen him too!

Lisa Curcio said...

Jami, that is one of my concerns, that his sats will go too high and his pressures will get to high for him.

I am starting to wonder if he has been asthmatic for a while and that is what was causing his lower sats when really he has been in the upper 80's all along, kwim?

Anonymous said...

Lisa, I am so glad for you and Owain and everybody in Virginia! Miss you guys, hope I can see you sometime this summer. Give big hugs and kisses to all the guys and little Ariel too! Aunt Debbie

Michelle said...

I'm so glad to hear that he might not need surgery for quite awhile, and glad that you're recovering after the latest hospital stay. I know how exhausting they are!

MollyinMinn said...

Oh yeah! That is wonderful news.

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