Ais Update 6/4

I'm almost too tired to write this tonight, but let's persevere shall we...

You know it's going to be a good day when you show up at the hospital and 2 large boxes of Rocket Bakery pastries are waiting for you. :)  And apparently 4 more boxes were given to the hospital staff. Such a generous and unexpected treat...and way to get us in good with the nurses. ;)

Med staff spent most of the day adjusting Aislinn's ventilator settings and pain medications. She was adjusting pretty well and showing that she was able to breath more on her own as they lowered her setting. Her blood pressures and heart rate and other vitals were doing well with each adjustment. Fantastic. At about 5:30, they extubated her (pulled out the ventilation tube). It was VERY exciting to see her without those darn tubes in her mouth.

the tubes you see are for oxygen and a feeding tube

As expected (and as is normal), she is showing some withdrawl symptoms, but overall they haven't been too bad (she's still on quite a bit of meds, it's a very slow process).  Her nurse today said that she actually calmed down more when they extubated her because she was so agitated with the tubes.

Thankfully, Aislinn has not been too agitated to let us touch her. And she really does seem to respond well to our voice and presence. However, we did not get to hold her yet. :( Soon, soon. Maybe tomorrow. She is doing better than I expected so far and the name of the game for the next couple of days is to continue with this slow weaning process. All while we wait for the air in the cyst to dissipate enough so that we can move forward with the internal shunt surgery. Her doctor is thinking this may get to happen over the weekend.

Overall, just a good day of forward progress, no curveballs, pastries and good visits with friends and family. :) Ronan got to spend all day with his buddy Greyson; I think he had a pretty great day too.

being adventurous with Mr. Greyson

Praises for Today

(seriously, you guys are awesome, the power of prayer is amazing, Praise God!)

-Aislinn's CT scan this morning showed a significant decrease in the amount of air in her cyst. Her doctor was pleased with this and is thinking her next surgery will be able to happen this weekend.

-She was extubated today!!! It went really well, better than I expected

-It was a positive day with positive outcomes and possibly more answers than questions for once :)

-We were loved on in extra doses today, it was awesome. I was explaining today that all of this support and love and prayer is like a giant, beautiful web that holds us up and allows us to rest in it. It's pretty amazing. If I could paint, I would want to try to paint this illustration and this feeling...

Prayers

-please Pray for continued improvement in her respiratory system. Her lungs are a little junky-yes, that's a technical term :) 

-continued prayers against infection and fevers. She's looking good in the area right now, we just want to keep her covered in prayers

-continue to Pray this Aislinn's adrenal deficiency is only related to her current situation and won't be long term. Her endocrinologist believes this to be the case, but we won't know for sure until we get her out of this stressful environment, back into regular life and then have her evaluated

-Ok, let's all Pray extra hard that we get to hold her tomorrow! :)  Obviously I'm more concerned for her health and want to be sure it's best for her. But seriously, tomorrow it will be 9 days since I have held her. 9 days!!! Can you even imagine not holding one of your babies for 9 days? Torture I tell you. 

-Pray the air continues to leave the cyst and that we stay on track for surgery this weekend. I never thought I'd be so excited for this stinkin' surgery. It was terrifying at first, and now we are anxiously anticipating the day.

Well, I think that's it for now. Much love, Nikki