Ais update 6/3

Aislinn's surgery went well and she is doing well! 

 Despite the disappointing news earlier today that Aislinn would not be getting her permanent shunt today, we felt it was a good day. Instead, the neurosurgeon put in an external shunt to prevent more air from entering the cyst cavity. The air currently in there (and the cause for the delayed internal shunt) can dissipate out through the external shunt and so the hope is that it will decrease to a level where her doctor feels comfortable moving forward with the internal shunt, hopefully in the next couple of days. 

I feel completely in the dark, knowing that the end is in sight, but not being able to see it. When?? How long?? Nobody really knows, it is really dependent on how Aislinn responds. We will not be able to leave PICU until at least a day or so after the internal shunt is put in and then we will probably be moved somewhere else in the hospital. Isn't so hard when you know God has a plan for your life and you know it is good, but you don't actually know what it is? Oh wait, that's just life I guess. A life of trusting God and His perfect will for me and for Aislinn and for our family. I've always thought I was okay at trusting and resting in the knowledge that His plan for me is better than I could ever imagine. Well, the stakes are higher now and let me tell you I'm not as good at this trusting thing as I thought I was. There are ways this could all go that I am NOT okay with. This realization is humbling. But I also think it's okay to cling to hope and promises and love that I know He has for Aislinn. And I trust that He has great plans for her life. I trust that she will make a full recovery.

The good news for today is that Aislinn will most likely be extubated tomorrow, late morning. This means that her ventilation tube will be removed and she will be weaned off the sedation and pain meds she is getting through IV right now. Sounds simple, but most likely won't be. Or at least that's what I'm expecting. She has thrown enough curveballs in the last week to keep us guessing. So we're praying she stays completely uneventful in the next...well forever...

We left the hospital feeling okay for perhaps the first time this week. We enjoyed a late dinner with our family and relaxed outside... As relaxed as one can be with a child in the hospital. One of the most difficult aspects of this week is being completely torn in two between two children in two locations. It has been very hard for me to be fully present when I am in either location. Because of the extremity of Aislinn's condition and because of his young age, we have choses not to let Ronan see Aislinn yet. We're just not sure how he would handle it. Our hearts long for all 4 of us to be together again. Even if it is in a tiny chaotic hospital room. We will consult with a Child Life Specialist tomorrow to figure out the best way to introduce Ronan to Aislinn. If she is extubated and doing well, tomorrow might be the day!

an "R" for Roney from a very thoughtful friend

Before Aislinn's surgery, we had a little time to burn and needed to get out of the PICU for a breather. After lunch, we grabbed coffee at the ER Thomas Hammer and then walked around a little. Seriously, the new ER is awesomely cool. I'm a design dork; the clean lines and modern design is the perfect place to rest my mind from the chaos of our lives. 

It's hard to tell, but this stair way is awesome. Your expecting a dingy back stair and then it's this awesome, bright, light-filled space. The picture doesn't do it justice, just trust me. :)

Almost forgot...

Praises for Today

-an uneventful surgery and successful implantation of the external shunt

-sunshine! Isn't sunshine such a game changer? I'm thankful we had the chance to soak up a bit of vitamin D 

-the good news that Aislinn will probably be extubated tomorrow. 

-as of 10:30 tonight, her neurosurgeon was pleased with how she is doing, so we are pleased too :)

-we got better rest last night

Prayers

-Aislinn is scheduled for a post-op CT scan in the morning. Please Pray that the amount of air is safely reducing (it can't all be removed at once or else the brain would flop into the open cavity) to a point where she can get the internal shunt placed

-We are excited yet a little wary of extubation. Pray it goes well, that she is able to breathe well on her own and that her withdrawls from the drugs are manageable. She has been on a massive amount of drugs and the doctors have warned us that she could have significant withdrawl symptoms

-Pray we get to hold her tomorrow. If all goes well, we should be able to

-Pray that Ronan's first time seeing Aislinn will go smoothly

-We also learned today that Aislinn seems to have adrenal deficiency (this could be what is causing the low cortisol and blood sugars). Pray that this is not an on-going problem, we hope it is only related to her current situation

Sorry, this was much longer than anticipated! We are deeply grateful for the outpouring of prayer and support we have received. Thank you!