A Special Dance

Three days after Ashlyn's brain surgery, she was free from almost all IVs and wires so we took her for a little walk around the hospital.  I found Ashlyn and her daddy having a special moment....

Melts.my.heart.

Pediatric Neurologist

Ashlyn had an appointment today with the pediatric neurologist.  Back in February, when she was diagnosed with Chiari Malformation, she was referred to a neurologist and a neurosurgeon.  Today was the earliest date we could get in to see the neurologist, but to tell you the truth, after seeing the neurosurgeon and already having surgery, I wasn't quite sure what to expect at the appointment.

The doctor got some information on Ashlyn's background and diagnoses, and then did a full neurological exam.  The doctor also explained Ashlyn's original MRI.

The neurologist said that Ashlyn seems to be doing wonderfully!!  She passed the neurological exam and the doctor doesn't need to see her back unless we have future concerns!!

Wahoo, great news!!



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10 Days Post Op

It's A Good Day!

Well, I think it is safe to say that we have our Ashlyn back!  She is doing great and is back to her old self again!

She hasn't had any Tylenol for three days now, she is eating well, and is sleeping better at night.

Ashlyn goes back to physical therapy this week and also has an appointment with the pediatric neurologist.

Bath Time!

Ashlyn had her first "real" bath last night since before surgery. It made me nervous getting her incision wet, but the doctor said it was ok.

Ashlyn found it relaxing to sit in the warm water and I was as gentle as I could be when I washed her hair.

Taking a real bath might seem unimportant to some people, but again, we celebrate the small steps in Ashlyn's recovery.

Hooray for clean baby!

One Week Post Op

I can't believe one week ago today Ashlyn had brain surgery! I will always remember that day, and the gut wrenching feeling in my stomach as we sat in the waiting room.

One week ago, Ashlyn could hardly open her eyes, she couldn't sit up, she had a catheter, she was on heart monitors and pain meds around the clock. TODAY, she is walking, laughing, eating, and talking up a storm.

Progress. Slowly but surely.

Ashlyn is still waking up a few times at night and her fussiness comes and goes throughout the day. I can tell when the Tylenol or Motrin wears off, as Ashlyn gets crabby and she doesn't want to turn her head and has a stiff neck. Ashlyn will touch her head and say "ow" a few times a day and isn't a fan of laying down to get her diaper changed because I think it causes head pain or pressure.

We were able to take off the bandage on the back of Ashlyn's head. Instead of stitches or staples, the doctor used glue, so you can really only see a line of glue on her head. The glue will eventually flake off, which, of course, is much easier than removing staples.

So, all in all, HUGE progress from a week ago!

Our Week in Pictures

After the MRI, Ashlyn couldn't get "juuuuice" fast enough.

She picked pink sunglasses from the prize box.

Getting ready for surgery

Getting ready to go into the operating room

Last kisses and prayer before surgery

One hour after Chiari Decompression surgery

Cuddling in ICU

Incision

Happy to hold my princess

Ashlyn's older sisters came to visit

Ashlyn sleeping with the teddy bear that her sisters gave her

All clean after a sponge bath

Incision

Home Sweet Home?

I feel like we have a newborn baby in the house again.

Ashlyn woke up last night at 2:30am, 3:30am, and 4:30am. My husband and I took turns getting up with Ashlyn and holding her and rocking her.

She has been pretty fussy today. If she is awake, she is crying or screaming. Luckily, the weather is nice so we can go outdoors to distract Ashlyn as much as possible. She hasn't eaten too much today but what she has eaten, she has kept down.

We like Tylenol right now. Tylenol is Ashlyn's friend.

We're Home!

Wahoo, Ashlyn got discharged today!

The neurosurgeon wanted to make sure Ashlyn could keep some food down this morning before allowing us to go home, since Ashlyn threw up three times yesterday. The doc wanted her to eat some breakfast and lunch before discharging us. Ashlyn still didn't eat too much, but we were still able to go home! Yipee!

Ashlyn slept most of the four hour car ride home. She is a little fussy but her only method of pain management is Tylenol and Motrin. The doctor changed the dressing from Ashlyn's incision so we were able to take a good look at it. It looks really good!

So, now recovery at home starts. Ashlyn will continue physical therapy and will have her incision checked in about ten days. She has an appointment with the neurologist next week. She will also have a follow up MRI in about six weeks.

I will keep updating this blog during the recovery process and I will post some more pictures soon. Thanks so much for thoughts and prayers and continue to pray for Ashlyn as she heals.

Recovery - Day 3

11:00pm

Ashlyn has TONS of energy! She isn't asleep yet.

She got her IV out of her foot so now she can walk more comfortably. So, walking she did! We walked the halls all night long! She is walking slowly and cautiously, but she seems pretty proud of herself.

Go Ashlyn!

Recovery-Day 3

12:00pm

Ashlyn is in much better spirits this morning! She is trying to talk and is a lot more alert. She isn't a fan of any of the nurses, doctors, or therapists, and won't even look at them. She is ready to bust out of here!

We have had a few setbacks this morning. Ashlyn tried to eat some waffles and threw up right afterward. So much for the waffles.

Later, we tried to stand her on her feet and she threw up again. So, getting hooked back up to the IV. Boo!

Ashlyn has been awake for the longest amount of time since before surgery (3 hours). She is exhausted and ready for a nap now.

Again, some forward progress and some setbacks. All in all, so far a MUCH better day than yesterday.

Recovery-Day 3

8:00am

Ashlyn slept great last night and my husband and I got 11 hours of sleep! Thank you Lord! I was emotionally and physically exhausted after yesterday, and I had a few meltdowns. Ashlyn had a rough day and screamed all day. It feels horrible that I can't take away Ashlyn's pain and discomfort and I feel so helpless. Her recovery process is going s.l.o.w.l.y.

Despite the crying and screaming episodes, Ashlyn did make some progress yesterday. She drank some more fluids and finally at a few Teddy Grahams last night! She no longer has a fever and her heart rate is normal! We were able to take Ashlyn for a little walk around the pediatric floor which helped to calm her down.

We celebrate the little things at this point, like wet diapers and eating one Teddy Graham.

Today's plan is for Ashlyn to keep eating and drinking, take out the IV, and start physical therapy. If she has a good day, the doctor said we MIGHT be discharged tomorrow!!

Go, Ashlyn, go!

Recovery-Day 2

11:30am

My husband and I took turns between sleeping on a cot and sleeping on the floor last night. Not really Holiday Inn, but at least we were close to Ashlyn. I think she would have slept through the night except for the nurses checking on her, which made her wake up. My husband and I took turns consoling her.

She seems to be keeping down small amounts of fluids, but isn't interested in food yet. She was awake a few times this morning for about a half hour each time. Unfortunately her IV came out so she needs to get a new one placed. Boo! She still needs a few rounds of antibiotics, fluids, and pain meds through her IV otherwise she could just do without it.

Ashlyn is still uneasy sitting up and needs assistance to stay upright. We will focus on the standing and walking later.

A few steps forward, a few steps back. Little by little...

Recovery-Day 1

9:30pm

Ashlyn's juice found its way back up, and unfortunately her favorite blankie (and my jeans) got the bad end of the deal.

Bring on the anti-nausea medication!

A Father's Love

My husband wrote a blog post about his emotions regarding Ashlyn's surgery.

You can read it here.

A Few Pictures

Ashlyn getting ready for surgery

Me getting ready to go into the operating room with Ashlyn

First glimpse of Ashlyn after surgery

Daddy holding sweet Ashlyn while she sleeps in the ICU

Ashlyn's incision, 24 hours after Chiari Decompression Surgery

Recovery-Day 1

5:00pm

We have seen some improvement today! While I was skyping with my parents, Ashlyn opened her eyes as she responded to their voices. She was trying to gaze through her swollen eye lids to look at the computer. It was a really great moment! She drank a half cup of juice and cried a little. She touched her head and said her first word in two days... "owww!" and then was back to sleep for about 5 more hours.

For the most part, Ashlyn just wants to be left alone. She either wants to sleep in the crib or be held while she snoozes. She gets pretty upset when the nurses mess with her.

The doctors are still monitoring her heart rate as it is still elevated, but it seems to be going down a little so that is great news! Ashlyn has a slight fever that comes and goes, so the docs are keeping their eye on that too.

Ashlyn's sisters, Mariah and Ambria, came up to visit this afternoon. Ashlyn tried to open her eyes in response to their voices as they sang to her. It was so sweet!

Ashlyn was also moved out of ICU!! Yay!! Thank you Lord! She still has monitors on but only one IV now.

She was awake for about a half hour, drank some more juice, and then back to sleep.

It has been a pretty quiet day and we are hoping for a quiet night too...

Recovery-Day 1

9:00am

Ashlyn did pretty well last night. She slept all night and my husband and I were able to get some rest too.

Ashlyn's heart rate continues to be elevated. They did an EKG in the middle of the night and today she will be seen by a pediatric cardiologist. Her blood pressure looks better so the docs are just hoping that her heart rate resolves itself.

We are hoping to leave the ICU and be moved to a regular room later today.

5:00pm--Surgery Day

Ashlyn isn't responding well to the pain meds. The nurses have tried various meds but Ashlyn is still screaming in pain. It is so hard to see her like this. My heart is breaking. My husband or I have to be holding her, but even then, she is still upset. I guess I would be too if my head just got cut open.

Ashlyn's heart rate is still high and her blood pressure is high too. Please keep praying.

Post Op Report

Dr. Fuchs, the neurosurgeon, was very pleased with how the surgery went. He said it was a very necessary surgery because when he made the incision, her brain was bulging out. Crazy! The doctor was successful at doing everything he wanted to do and completed the dura patch.

New info:

dura - thick outer layer covering the brain and spinal cord

duraplasty - surgical procedure where a patch is sewn into the dura

graft - material, or tissue, surgically implanted into a body part to replace or repair a defect

This part of surgery was necessary to make more space for Ashlyn's brain. There are different ways to create a patch and so I asked Dr. Fuchs what he used. He used a piece of the outer covering of a human heart!! WHAT!!?? That is amazing!! Sorry if this sounds pretty graphic. So, we are extra grateful for the donor for the new patch inside of Ashlyn's head! I'm not sure who to thank, but Thank You!

There are the main detail from our post op report with the neurosurgeon. We are so glad that it went well. Thank you Lord!

12:30pm-Surgery Day

Ashlyn was sleeping on her back when we first saw her in the ICU. Her eyes were swollen and she had lots of wires and tubes coming from her. We weren't shocked because the doctors and nurses prepared us for this. My husband and I started talking to Ashlyn and rubbing her hands and she tried to peer out of her swollen eye lids to see us.

Within a few minutes, Ashlyn started screaming and sat up quickly. She was pretty upset that someone cut her head open.

Morphine please!!

11:45am-Surgery Day

Ashlyn's surgery is done!! It was a success, all went well and she is headed to the ICU. We are anxious to see her in about an hour.

Thank you for your thoughts and prayers!!

9:40am-Surgery Day

Just got the call that the doctor started the surgery. It was a long hour waiting to hear that they got started. They had to place all her IV's, prep her head, etc.

Now we wait 3 more hours.

8:45am-Surgery Day

Ashlyn did pretty good this morning. She was grumpy from being woken up early, but she didn't have too many meltdowns due to hunger or thirst. She only asked for "nack" and "juuuice" a few times.

The nurses were great with her and tried to keep her smiling.

We met with the neurosurgeon right away and he marked the back of Ashlyn's head where he will do the incision. We also met with the team of anesthesiologists that will be beside Ashlyn the whole surgery.

I was able to walk with Ashlyn to the OR and hold her while she got her first round of anesthesia. I held her tight and sang her favorite song "This Little Light of Mine" until she fell asleep.

Now we wait to get the "Start Call" saying that the surgeon has started....

5:06am

I'm awake. Time to get up and get the day started. My stomach is in knots and butterflies all at the same time. Having mixed emotions.

I will post updates as time allows and as we get new information.

Again, we are humbled by the outpouring of love and support!

Here's to a Good Night...

Ashlyn had a nice, warm bath, is drinking some juice and eating fishy crackers. We are all getting ready for bed. It will be an early morning and a long day tomorrow.

Ronald McDonald House

Checked in to Ronald McDonald House. Trying to relax a little.

Pre Op

It was a long day of appointments. We were in doctor's offices for three and a half hours today.

The neurosurgeon discussed Ashlyn's MRI from yesterday. There haven't been any changes from a few months ago. The spinal fluid isn't flowing as it should. The brain is still sinking into her spinal cord.

She has a pre-syrinx (aka a small pouch of fluid forming in her spinal cord), but not large enough to have to do any special surgical procedure on. We are grateful for this.

The neurosurgeon also explained the surgery a little more. The incision will be about 3 inches long, and he will remove a small portion of her skull. He will also remove a piece of her first vertebrae about the size of a silver dollar. He will cauterize the end of her brain that is sinking too low. The surgeon will put some sort of patch to make more room for Ashlyn's brain.

Me or my husband might be able to go into the operating room with Ashlyn tomorrow and hold her while she gets sedated. We have to check with the anesthesiologist about this in the morning.

Ashlyn got some blood drawn, which she didn't like too much. Her arm was numb but she hated being held down. She is feisty.

Someone also talked with us about what to expect before, during, and after surgery. This was helpful to me since I am so detail oriented. It was a lot of information but it was good for both me and my husband.

We have to be at the hospital tomorrow at 7:00am. Ashlyn's surgery is scheduled for 8:45am, and my in-laws are coming to sit with us.

3:34am

I still can't sleep.

Nerves are setting in.

2:26am

I can't sleep.

Listening to my sweet baby girl breathe and praying for her while she sleeps peacefully.

The Start to our Week

I was hoping today's MRI would go better than the one Ashlyn had a few months ago. Nope. Ugh, it was rough.

Ashlyn was beyond hungry and kept yelling "nack, nack. Juuuice" and we couldn't do anything about it to satisfy her needs. We practiced the art of distraction, but to no avail and the melt down started as soon as we went in with the nurse. (She couldn't eat breakfast and had to stop drinking two hours before the MRI).

The good news is that Ashlyn didn't have to get an IV this time, they gave her some medicine by mouth instead. Of course she spit half of it out all over me, but at least it worked. It was a long 20 minutes before she fell asleep.

My husband and I were able to go into the MRI room with Ashlyn, which was a VERY loud 45 minutes for us while they performed the test. We just kept hoping and praying that Ashlyn would stay asleep and she did! She woke up RIGHT as they were finishing the test. Perfect!

Ashlyn woke up in a great mood and acted like nothing happened. She started babbling to the doctors and was excited to finally get juice and crackers. She picked out some pink sunglasses from the prize box and sported them the rest of the day.

So, it was a brutal morning watching Ashlyn scream, but once the MRI started, everything got easier. We relaxed the rest of the day and are hoping to get a good night's rest before two more appointments tomorrow.

Hello Duke

We arrived last night to our home away from home for the next week.

Hoping and praying for the best...

Appointments

Just trying to keep everyone posted:

Ashlyn has an MRI Monday morning at 11:00.

We meet with Dr. Fuchs, the pediatric neurosurgeon, Tuesday at 10:00.

Ashlyn has pre-op Tuesday at 11:00.

Easter

In the midst of everything, we hope to take a break and focus on Easter today and celebrate. It is because of the true meaning of Easter that we have HOPE!

Overwhelmed

The flood of emotions are starting....

I was a teary mess yesterday and didn't know if I was coming or going.

I can't sleep.

I am an organizer and until the house is clean and we are packed, I will feel like there is still too much to do. I'm trying to still be fully present for the girls, but it is difficult as I am running around like a crazy woman.

The older girls are feeling the stress too and are already saying they don't want us to leave. That makes my heart sad, so I am trying to pay extra attention to them. We went to a bonfire with friends last night. It was nice to relax a little and watch the girls run and play.

The doctors are starting to call with appointment reminders. Thanks for the reminders. I don't think I can forget.

I am truly humbled by all the prayers and support. This brings me to tears (and I don't cry very easily).

I don't have an appetite (so I bought some donuts to help cure this).

I got to skype with my family back in Michigan and they got to see Ashlyn one last time before surgery. That makes me happy and sad.

My house is a glorious mess. I hate that.

The reality of Ashlyn's brain surgery is here. It is happening.

So, the randomness of this post is how I am feeling. All over the place.

That's all.

Family Ties

Ashlyn's oldest sister, Mariah, couldn't sleep last night. She overheard us talking about the surgery while she was laying in bed. She stumbled out of the darkness, squinting her eyes from the bright light.

I asked Mariah what she was feeling. She said she was sad and mad about Ashlyn's surgery.

She is mad at the doctors because they are going to hurt Ashlyn and "cut her head open." I explained to her that the doctors are helping Ashlyn, but that is difficult for an 8 year old to comprehend.

Mariah is still sad that they have to shave some of Ashlyn's hair, so I said that is will be ok and the hair will grow back.

This whole experience is difficult for a child to understand.

After we received news about the surgery about a month ago, we explained to the two older girls that Ashlyn's brain is too low and the doctors need to help fix it. We showed the girls the MRI to help explain Ashlyn's condition.

This journey has been tough on the older girls as well since all three girls are so close. Love, love, love my girls.

A Day at the Park

I wanted to get a few pictures of Ashlyn before some of her hair gets shaved off next week.

More Testing

Monday, Ashlyn will go in for a few more tests at Duke. The first is another MRI to see if she has a syrinx. The first MRI wasn't low enough to see if this exists or not so they have to repeat the MRI. Here is a brief description:

Syringomyelia (sih-ring-go-my-E-lee-uh) is the development of a fluid-filled cyst (syrinx) within your spinal cord. Over time, the cyst may enlarge, damaging your spinal cord and causing pain, weakness and stiffness, among other symptoms.

Syringomyelia has several possible causes, though the majority of syringomyelia cases are associated with Chiari malformation, a condition in which brain tissue protrudes into your spinal canal. Other causes of syringomyelia include spinal cord tumors, spinal cord injuries and damage caused by inflammation around your spinal cord.

The pediatric neurosurgeon also wants to do a test to see how the spinal fluid is flowing. The first MRI showed some blockage with the fluid, but this test will be more specific.

Depending on the results of the MRI and the flow of the spinal fluid, the surgeon might have to adapt the surgery a little. We will know more next Tuesday when we get the results and meet with the doctor.

Let the Countdown Begin

We leave for Duke Children's Hospital in ONE week. Ahhhh!! Ashlyn's surgery isn't until Wednesday, but she has more MRI's, doctor appointments, and pre op, so we need to be there two days before surgery.

This week will be full of packing and preparing to be gone for a week, last minute errands, and making arrangements for the two older girls while we are away.

I am starting to lose sleep.