Sheesh!
I called ahead and asked them to wire the hospital with wifi for me
but they didn't.
The nerve.
We are here
settled
and getting into a routine
which involves a lot of coloring and painting
and very
very
very
little sleeping.
But he's cute.
So he's worth it.
The monitors are calibrated to go off when certain levels fall below acceptable rates
which when you are Joshua
means
all.
the.
time.
It's big fun.
His O2 sat's are at around 65%-70% when he is sitting around
and they fall to 55% when he tries to walk around.
He's doing great though.
Amazing in fact that his body has learned to compensate so well.
He has a very awkward gait and is quite unsteady on his feet.
It's a bit of mystery to them at the moment but the diagnosis they are running with is malnutrition and perhaps a Vitamin D deficiency and/or a mild case of rickets.
He is having a head MRI this afternoon just to rule out an neurological causes.
The doctors just finished their morning rounds and the word of the day in regards to his heart issue is
"OPTIMISTIC".
Hold on.
I just have to say that again cuz it sounded so good.
OPTIMISTIC.
Yep.
Mountain be moved.
My God is bigger.
This based on the results of the echo he had yesterday.
Now we wait for tomorrow
cuz tomorrow is heart cath day.
And that's the biggie.
We will have a definitive answer tomorrow afternoon as to whether he is operable or not.
He is as sweet as can be
quiet
a little withdrawn at times
but being treated like a rockstar.
He's a bit of an anomaly because they just don't see 7 year old's that have survived this defect
which means we have met pretty much every med student that works here.
I am trying to find a balance and a rhythm
but so far I am failing at that.
I haven't eaten anything besides the crackers and snackage I brought with me because I don't want to leave him.
He gets very nervous when I step into the hall just for coffee so I haven't figured out how to go all the way down to the cafeteria yet.
I'm sure I will figure it out but in the meantime Goldfish crackers and I are besties.
That's all for now!
I've been gone 3 minutes....we'll see how he did.
I am going to try and update every day now
because I'm a girl
and I'm Sonia
which means I have a lot of words that I need to get out each day.
I'm in love!
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"optimistic" brings tears to my eyes! Our God is mighty to save! Still praying!
ReplyDelete-Rachel in Columbus-- Blogger hates me!
You know when you have a "newborn" it takes a while to find a schedule between learning to sleep and eat, especially when there's a stay in the NICU/PICU so...what's the rush??!! :-) Praying for you ALL, and an extra dose of energy for Mom! BTW, love that word of the day...OPTIMISTIC!!
ReplyDeleteMuch love,
The Weissends
John, Paula, Carla and Frances Xin
Montgomery
Love the update:) The pictures show one happy kid, blessed by God to have arrived into your family. Thanks for sharing all of this wonderful journey:)Praying with you...
ReplyDeleteLisa Murphy
can i ask, what exactly is the heart defect? have they ever given a diagnosis?
ReplyDeleteglad he's here and safe....he looks good!
Oh, my goodness, bless his little heart (I mean that quite literally), he is the sweetest thing! Lord Jesus thank you so much for bringing this son from afar and for raising up this family just right for this little man!
ReplyDeleteSo glad to hear the optimistic report!
ReplyDelete(When I stayed in the hospital this past June with my husband, I ordered the hospital meals with him and paid in cash when they delivered. You might want to check into that.)
Lyn
Oh Sonia, we are all walking such similar paths. I am so elated to read this post! We are all praying, my church, my family, my friends . . try to find a way to take care of you, have someone bring you a meal . . God is so very good! Blessings!!!
ReplyDeleteOPTIMISTIC - Praise the Lord!
So happy to hear that they are "optimistic"....What a blessing and it is awesome to see him sitting up and painting....Blessings to your entire family!
ReplyDeleteOur God is bigger for sure!! Praying for the procedure tomorrow and for wisdom for the team taking care of your precious son.
ReplyDeleteoh sonia,
ReplyDeleteloving every post,
i can just imagine what it's like.
wishing we lived close and i could help in some way.
you are loved, friend.
blessings from our house to yours
So glad the echo was encouraging! Praying the cath goes well tomorrow and the original written report from China was way off! Thanks for updating!
ReplyDeleteyou have so many of us here praying, praying, and praying. Move those mountains!!! Praising God that he has brought this sweet boy into your family!
ReplyDeleteOh my goodness, Sonia, tears flowing here as I read this update. SO glad to read that nice big bold word "OPTIMISTIC." Never has that word sounded so wonderful. So glad you are getting to meet all those residents and med students...all that attention is all that much better for your sweet boy. I wish I could personally deliver you some food...I survived many hospital days and nights on cans of tuna and Starbucks Via instant coffee packs (they're not bad...)...hope you can find some nourishment for yourself cause that boy doesn't need his Mama to keep over from malnourishment herself! If I were closer I'd be bringing you some meals. I know how loved you are and I know you probably will have folks stopping by with food for you soon after this update has been out for 30 seconds or at least an hour. Wish it could be me, though! Sending hugs and much love. Thinking of you and your gang nearly every moment.
ReplyDeleteOh girl...I wish I were there so I could go to the cafeteria for you and get you a salad. Or chicken nuggets, at the very least. Praying for you guys. I am beyond excited that you're utterly in love. :)
ReplyDeleteLove you,
CO
Praise.
ReplyDeleteBe.
To.
God.
So excited to read that word, OPTIMISTIC!
WOO!!!HOO!!! So glad to hear that word! I wish I were closer to you - I would bring you a burger and fries and chocolate shake (or a salad if you prefer!)
ReplyDeleteThanks for the update.. and the promise of a daily one! :) I have a lot of words to get out too! :) Joshua is just precious and so deserving of being treated like a rock star! I have no idea how you're going to get through these next 24 hours, in anticipation of test results, but I have a feeling you'll have lots of folks praying you through it! And someone close by, please bring this woman some food! :)
ReplyDeleteIt is so good to hear from you! I have been hovering over my computer waiting for an update!
ReplyDeleteWhew- optimistic... thats incredible and worth a bunch of goosebumps in MN!
Praising God for his goodness!!
Feeling overwhelmingly thankful to God and to your family for trusting in HIM and taking a chance on an orphan... I mean on your SON!! Yayayay!!
Praying for JJ, for the upcoming tests, for his Momma and for his family!!
OPTIMISTIC is the best word EVER! Keeping him and you all in our prayers! He is SOOOO precious!
ReplyDeleteHe is PRECIOUS....OPTIMISTIC is AWESOME! Prayers continue....
ReplyDeleteCindy
He is adorable! I'm so happy for the words "optimistic"!! And I do see that he is being treated like a King. He deserves the royal treatment, for sure! The med students are witnessing a miracle - they CAN and DO happen! :)
ReplyDeleteSo thankful for such good report!! I will say OPTIMISTIC again just so you can see it again!!!! I love that word!!!!! love love love it!!!!!! Prayers are with you and your sweet son!!!
ReplyDeleteI love that word OPTIMISTIC!!!!! Love it.
ReplyDeleteWill keep praying.
But so happy!!!!!!!!
Oh, your #7 boy is adorable! He must be so frightened by everything being so different and new. Have you tried to curl up next to him in his bed? He might just really want & need that from his Mama. And, he probably has no clue how to ask or communicate it to you. Give him a hug for me, too!
ReplyDeletePraise God!
ReplyDeleteAs for the food, make friends with a nurse's aide, or a nurse, or a housekeeper and ask them to get you something from the cafeteria when they go off the floor to get their own lunch (I'm guessing many of them go there for their own lunch). The housekeeper in particular might have the time to do it even not during her/his lunch, depending on the size of the hospital. Also asking for a parent/guest tray is a good option that just about every hospital does if you ask for it (some charge you, some do not). Or do the trick of ordering double for JJ. You never know what he will eat, and you don't want it to go to waste after it gets there. Wink. Wink. (And I many/most nurses and the like will not say a word about doing so. Particularly in a situation that is complicated... like yours is.)
Many of continuing prayers.
Sending prayers and more prayers! The song running through my head just after I read your post was "How great is our God!"
ReplyDeleteWhat a great testimony of "follow Me!"
You are not alone and you are even funny when you are tired and, no doubt, exhausted. Of course, you are also in love and it's not so hard then :-)
BLESSINGS!!
Oh, and tell Rachel--blogger hates me for posting too--when you sign into your google acct., don't click the "remember me" button and then you can post comments :-) Like me right now. LOL!
Crying happy tears!!! :) OPTIMISTIC!!! I've been praying and just this week it seems like I truly believed that God was bigger than all the obstacles I've been praying about - most of all JJ's! (Yeah, duh! But I'm human and sometimes God has to hit me over the head to remind me how powerful He is).
ReplyDeletePLEASE keep us posted and we will keep PRAYING! Awesome! Hugs!
Oh Sonia, he is just the cutest!! What a precious boy!
ReplyDeleteThat is WONDERFUL news!!! Praise God!!!!! We'll continue to pray for VERY OPTIMISTIC results from the cath!!! Yay!!! :) He's a doll, love him to pieces! :)
ReplyDeleteOPTIMISTIC ... my new favorite word!
ReplyDeletePraying, praying, praying for more good news!
Wish I there to bring food and hugs!
Love & Blessings,
Kim