Gigi and Grandma Vicki (my mom) came over today and the girls made pumpkin people. The two on the left are Kamryns... the two on the right belong to G-monster. They had a ton of fun creating these little alien/monkey/goblin/very girly pumpkins.
We were homebound so I gave Apria a call to come by and switch out our oxygen tanks. It's always nice to have a new bunch of fully loaded green tanks in our "oxygen corner". We added an "M TANK" to the crew... he's the middle sized guy. We are getting to know all of the delivery drivers and Owen scoots behind them as they bring oxygen in and out of the house. I'm pretty sure he thinks they are there JUST to see him and play with him.
And this is why we need all of these lovely beauties decorating our home!!! The pink number was Owen's oxygen saturations as of this evening on 3/4 liters of O2. Not good.
And here are his sats after 30 min on 1 liter of oxygen.
I took a super cute video of the little guy tonight and he was full of energy... for him that is. That was just before I hooked him up to the oximeter and boy was he working for each breath. As soon as I can get youtube or vimeo to upload the video (it's a big video file), I will post it.Carson and I were talking tonight and he asked me if I think Owen is starting to decline. My optimistic side says "he's just having a rough week", but we'll see what they say next week at Stanford.
Another thing that is probably making his feel so crummy is that his massive doses of medications are lowering his blood pressure. Dr Stock (Cardiologist) said that when Owen was admitted for the Gtube surgery last month, they were able to do constant monitoring of his blood pressures and at times his diastolic dropped into the mid 20s. I'd love to back down on some of the meds... especially if they aren't really improving his heart function. We'll know soon.
Owen did tolerate his feeds today and didn't puke once! On the other hand.. he was pretty crabby and wanted to be held and had a really hard time trying to play for even a minute or two. Clearly, he didn't feel great.
He's sound asleep now and tomorrow is a new day. I'm trying to make no plans so that if I get nothing done, I can consider the day a success!! I'm off to bed.
11 comments:
What would little guys do without big sisters? Kamryn is a very talented girl and her smile makes us all happier!
Little O and his butt scooting makes my heart melt. I can just see him following the oxygen guys around......so sweet!
I still wonder if his puking is due to allergy's of his feeds, probably because of the rash, but it could just be all those meds upsetting his teeny tiny tummy.
Have a wonderful vacation on the way to Stanford and I hope they have some good answers to make him
feel a lot better. If anyone knows it's Stanford!
Praying for my favorite little guy!
Poor little guy...I'm sorry he's been having a rough couple of weeks, so glad you're heading to Stanford next week and hopefully docs can "re-adjust" some meds/the plan to help out one of our favorite heart buddies. Praying for Owen and your family :) Have a safe trip too!
I'm praying for Owen and you all. As ever.
Cxx
Praying for precious little Owen and your family! I hope you get a lot of great answers at Stanford!
I bet Owen would be so happy if Kamryn were home all the time..too bad she's not so hip on the idea :) I can't imagine why she wouldn't be LOL
Praying that his stats come up and the docs can figure out exactly what he needs so he can feel better! He deserves to have days full of playing and laughter :)
Sweet Owen ... The Smith's are continuing to pray! It will be so good to have some fresh eyes look at him and hopefully give you some insight into future plans.
Love to you all!
Jesse
I loved cuddling my big boy and singing him silly songs, but I wish he had more energy and felt better and having me chase him all over (But the cuddles were still nice) I love it when he flips his hands over and says,What-eva". :)
His "tease" look is so cute too.
The girls had some doosies of stories about their monkey alien critters and their super powers...the thoughts behind their creations are amazing and oh so silly and fun. I got some Kami hugs too...what a wonderful day for a GRamma.
You really are amazing to me Andrea. You handle everything with such ease and grace and optimism. What a wonderful quality that is and one that I admire. Our little family continues to pray for Owen and your entire family and I hope that you will get some needed answers at Stanford next week. What a trooper Owen is and I am hoping as well that he is just having a down spell this week. However, I can not wait for the day that he gets his perfect heart. It will be a day to celebrate for sure!
Love, Keisa
Andrea,
I feel so bad that I am so incredibly behind on your blog. Life with school is so very nuts right now and I am not really looking at other blogs right now. But I wanted you to know that I continue to think of you and sweet little Owen and that he is in our prayers. I do think it is amazing that you continue to have such a positive attitude through it all. And I am also amazed at your knowledge. You have truly drowned yourself in Owen's condition and I think it is remarkable. You are remarkable. Take care.
-Jamie
P.S. I HAVE to try your enchiladas, thanks for the recipe!! Also, those pumpkins are adorable and the caramel apples look divine! That is also something that I have never attempted.
A no puke day is always a good day :) Still praying in KY!
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