Ais Update

The ups and downs are part of this journey. I hate them. I hate being there and hearing every new development. Developments that are quickly taken care of. Relief. Developments that may have long term effects. Nauseous. I hate not being there more. That's my baby girl. Being away usually makes me more sick than being there.

A lot has happened in the past couple of days. My brain is a large sponge, taking in everything. Absorbing, absorbing, absorbing. Not sure what to do with it all. At times I worry. Of course I worry. At times I feel surprisingly good. It's hard to know what to even think - we won't know much until after her surgery, after she's extubated, after she's comes off the drugs and its withdrawl effects. We're told it will be a few weeks until we can begin to know who our little Ais is. Those 3 weeks seem like a mountain. I can't wait to get to the other side, but I'm scared of the journey. We're told this is the time to relax. To let the nurses take care of her and get some rest. Riiiiiggghhhttt... And so the hard part comes after her surgery when she is not intubated and sedated. I completely believe them, they've been through this a hundred times. I just wish this "easy" part were a little easier.

Yesterday (Thurs) Aislinn had a little "event." I'm not sure that word can ever mean the same thing to me again. We were taking a lunch break when we got a phone call about said "event." So we pretty much ran to her room. What the heck is an "event"? Well, in this case, Aislinn's heart rate and blood pressure completely bottomed out for 5 seconds. Thankfully they came right back and by the time we reached her room, she was stable and no longer blue. It has taken us a full day and a half to recover from those horrifying moments. We may not fully recover until she is home and back to normal. Nothing makes you more vulnerable than the possibility of losing your own child. The care team (nurses, doctors, etc.) think they have figured out what caused this event and quickly made the changes.

Praises for today:
-We are thankful for her life!
-The latest CT scan shows that the cyst is slightly smaller. This is great considering we don't actually expect much of a decrease in size. Once the shunt is put in, it will be programmed to monitor the pressure in the brain and drain the fluid as necessary. Her brain will grow and develop normally and if it puts pressure on the cyst, the shunt will relieve the pressure
-Aislinn's fever has come down. She has been hovering around an acceptable level!
-So far it seems that her infection has not spread (when she was admitted she had a UTI)
-Some meds were adjusted and/or changed and Aislinn's heart rate and blood pressures are more acceptable to her docs. Hopefully no more "events"
-Her cortisol levels were low but she is responding well to the steriods she is being given
-Her right lung was partially collapsed, but a new xray shows a significant improvement, getting back to normal
-My persisting stomach ache has actually subsided and I am able to eat.
-Last night Patrick and I got great sleep. Slept. Like. A. Log. Ronan did also. Ais even had a good night.
-Patrick's blood sugars were running high all day yesterday. Today they were great.

Prayer Requests:
-The latest CT also showed that Aislinn has suffered a series of small strokes. It's reasonable to assume that these occured over the weekend when her symptoms first presented. The neurosurgeon said its very common to have great recovery because of Aislinn's young age and that her brain is still developing. Her normal development up to this point is also encouraging because that stinkin' cyst is so large but her brain clearly compensated. Pray that Aislinn has a full recovery from these strokes and for our peace of mind.
-We are waiting on results from a kidney ultrasound to verify whether or not the UTI has turned into a kidney infection or if there is an abscess. I can't remember what led them to this but let's just Pray they don't find anything!
-Continued to Pray that she has no fevers and infection over the weekend so that we can move forward with the surgery to put the shunt in, currently scheduled for 4pm Monday
-Pray for her surgery to go smoothly and that her body will welcome the shunt with open arms! (no infections, no blockages!)
-Pray for peace and rest for me and Patrick and our family


Thank you for your prayers and support! It is amazing to write all of this out and see how much that poor little girl is going through. We have hit almost every system in her body so far, but we'd like to stop that trend. :) It is also so important for me to recognize that the praises outweigh the prayers. It doesn't feel that way, but it's true. And we continue to keep hope and trust God for our little girl's life. We believe He has the power to fully heal her and bring her a complete recovery.