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.

Our Sweet Ais

Some of you may already know parts of this story. Others may have caught the updates without really knowing what is going on. So here's the full story of our past week. It's been surreal, emotional, hopeful, exhausting to say the least.

Friday morning Aislinn woke up not feeling well. She didn't want to eat. Well, that's a first. Then she threw up. Another first. Then Ronan woke up complaining of a stomach ache and had some tummy issues later that morning. Clearly we were dealing with a stomach bug here. Ais threw up a few more times that day and was generally sleepy and clearly uncomfortable. She was arching her back some, I assumed to relieve her tummy.

Saturday Ronan was fine, we started our weekend with a trip to Home Depot preparing for lots of projects around the house. Aislinn was getting lethargic and still arching her back some so we started to get concerned. We debated whether or not to take her to the ER, but after she ate some lunch, she perked up for a few minutes. We took this as a good sign and held off going in. We went through the same thing around dinner time except that after dinner she threw everything up. I ended up taking her in to the ER around 10:00 Saturday night. They also thought it was likely a stomach virus and told me to keep her hydrated. They did do some basic blood work and and ultrasound of her stomach, neither of which showed anything. We both thankfully got good sleep that night.

Hanging out in the car at Home Depot

Sunday, her symptoms persisted. No vomiting, but increased lethargy and back arching. Like contortionist arching.  Patrick was really concerned and frustrated that they hadn't done more testing at the ER. This arching and moaning seemed really abnormal. She perked up a couple times again Sunday, just enough to keep us from going in again. Anyone who has gone through the "do we go? do we wait?" battle knows just how we were feeling. We were trying to hard not to overreact and trust what the doctor had said. He told us to take her to her pediatrician Tuesday if she wasn't better by then.

Don't mind the dog hair ;) I only laid her on the ground to get a picture in case she presented differently in the ER

Monday was more of the same. At this point we were pretty worried. This definitely no longer looked like the stomach flu. Patrick took her to the urgent care, who immediately sent him to the ER. This time they ran all kinds of tests and planned to do a lumbar puncture (spinal tap) to test for meningitis. They said her back arching is a clear neurological symptom. The ER doctor also went with his gut to get a CT scan done.

The scan came back showing a VERY large cyst next to her brain. It takes up about 60% of her left hemisphere. We are both haunted by the image of her brain. It is indescribably shocking to get news like this. My brain started reeling when the term "neurosurgeon" was used. He (the on call neurosurgeon) was already on his way and Aislinn would be going straight to surgery to have the cyst drained. It had become so large that it was putting pressure on her brain, which caused the arching and vomiting. Poor baby girl probably had some killer headaches too.

The neurosurgeon thought it was most likely an arachnoid cyst. I wasn't sure what that meant, but it sounded like spiders and I hate spiders. And now I hate arachnoid cysts. He didn't seem too concerned which probably helped keep my calm. Not much we can do at this point but take each moment as it comes.

The next person in our room was the hospital chaplain. Now, if the chaplain shows up is that supposed to bring comfort or alarm? He is a very kind man and did provide comfort and prayers and distraction through conversation. He guided us along the way as Aislinn was prepped for surgery and led us to a large empty waiting room where we waited for the surgeon to bring news. An interesting part of this journey is admitting when you need help or prayers. Apart from calling our families, I was prepared to hang tight, ride this one out and dole out the good news on the other side. However, I realized this news was big. Possibly too big to handle on our own. And we've been discussing the importance of community and vulnerability within community. I realized I had to let people in to these weakest moments so they could provide the prayers and support we would need. We have had amazing support from family and friends and are so thankful God has surrounded us with amazing people. That first night in that large empty waiting room, with our heads spinning, our pastor and his wife showed up within minutes of our phone call. A good hug and prayer provides so much comfort.

Aislinn's surgery went well. They put in a tube to drain excess fluid from the cyst and relieve the pressure the cyst was causing to the brain. We were overjoyed to know that the mass was indeed fluid, not solid, and that it was clear, so not infected. However, nothing could have prepared me to see Aislinn for the first time after her surgery. I don't think I can even post the picture we took, but this will give you an idea. (Like I mentioned in another post, I know the photos are disturbing, but we want to be real about her state so that you can celebrate fully with us when she is healed!)

It has been a roller coaster this week with some complications. Aislinn is a fiesty little patient. They would like to keep her completely sedated for a variety of good reasons, but she is giving them a run for their money. It is actually a very good thing because it shows good neurological responses. I have always called her Crazy Aisi, mostly because she is not crazy at all, but apparently she is now living up to her name.

An MRI the next morning confirmed that she does have an arachnoid cyst. They are not terribly uncommon, though the size of hers is. With a surgery in the next few days to put in a programmable shunt, Aislinn is expected to fully recover. Praise God!

I love these toes even more now as they are the only thing really free and clear to touch without disturbing