Good to Be Home

 

Kaylee slept in her own bed last night. She texted me at 4:30 am for more medication as her head started hurting pretty bad. I laid with her a bit until she fell asleep again around 5:30 am. She slept until 8:30 am. 

We set a goal of sitting up 4x today for at least 30 minutes each time. She did a great job getting this goal. She sat at the table with played Battleship with Trevor and Othello with me. She also joined us at the table for dinner. She ate a bit more today and drank pretty well. Today she didn't need any zofran and didn't have any nausea for the first time. Yay!

Kaylee has enjoyed seeing Rizzo again. This morning she spontaneously sat up, got down on her hands and knees to pet him, then lifted him up and carried him to the couch. It was so encouraging to see her move and to show some interest in things other than sleep. Yay God.

Man were we blessed today. Trevor stopped in at work for a bit and was handed five homemade meals, which included two pans of lasagna, a ravioli bake, Sloppy Joe meat and chicken with sun-dried tomatoes and penne pasta. Plus gift cards to the movie theater, Zio Johnnos, Subway, Dairy Queen and Pancheros. They also collected $120 for Kaylee when she feels better. 

As if that wasn't enough, Kaylee's club basketball team contacted us and wants to provide us with meals. Then about an hour later our small group from church asked if they could too. Man are we blessed with amazing people all around us! Thank you Jesus!

Kaylee's Home

Exhausted...

Trace is happy to have his sister home

Kianna was with the Shannon's today, as they took her to her soccer tournament. 

Kaylee had a decent night's sleep in between telemetry beeps, which are always a little disturbing. Dr. Zanati came in around 9 am and was happy to hear Kaylee had a good day yesterday. He said if all goes well the rest of the morning then at noon to call and he will discharge her to home.

Once home we should be getting a call from Dr. Buatti, the radiation oncologist to schedule her surgery. She also needs to follow up with the ophthalmologist to complete the visual field defect evaluation and with neurosurgery in 6 weeks.

The physical therapist came by and took Kaylee on the stairs for the first time. She did a flight with SBA and then took a walk.

Kaylee was able to participate in her "My Faith" Sunday school class at church. They called and put her on speaker at the beginning of the class. She was pretty tired by the end of it. It was a lot of stimulation and her headache increased by the end. It was a good discussion though and touched on having faith when bad things happen to us, which was very appropriate.

I woke up a little angry at God today and had a good cry after the Sunday school class. Trevor posted on Facebook that Kaylee is going home today and people are posting, "congrats", "how exciting", and "Praise God". I guess I'm not excited. I'm nervous. She was on an IV yesterday, so now there is pressure again to keep her hydrated. She still doesn't have much of an appetite, so we still have to remind her to eat. She is on constant meds throughout the day so she can function and there is always the risk of another bleed...

Kaylee has been my only focus for the past week and now at home I am "mom" to three kids, not just one. I'm not sure I'm ready to multi-task yet. I'm scared. Our house will have a lot more noise and stimulation than she has been dealing with at the hospital. I'm not sure how she'll handle it, as she still sleeps most the time. I have a lot of fears and uncertainty, which I choose to give to God.

Instead of focusing on my fears, I choose to be thankful for the following:

• Kaylee is alive and without any neurological deficits. This is HUGE.
• God gave me wisdom to call the "on call" doctor last Saturday evening.
• God gave the "on call" doctor wisdom to send us to the ER.
• God gave the ER doctor wisdom to order a spinal tap and CT scan, which found her brain hemorrhage.
• God got Kaylee back to Cedar Rapids for medical care vs being stuck in AZ.
• And much, much more...

Kaylee did make it home today, but it wasn't easy for her. She was exhausted and had a bad headache by the time we got there. Regardless, she's home and we are happy to all be together again. I love the picture of Rizzo lying on her while she rested. He missed her too!

Continued Progress

 

Strawberries from Aunt Stacie

We brought Kaylee up to the Rooftop, where children wave to the crowd during football games.

Sadly no games in April

Kaylee's first wheelchair ride with us

Kaylee's FC United soccer team

Nana Bear and Miles

Kaylee had another night of good sleep. She woke up talking about several dreams she remembered. She ate four mini donuts and finished off the strawberries for breakfast. She has been to the bathroom twice and has walked the hallway 2x already. The doctor wants her to walk 4x today, so we set goals for 9 am, 12 pm, 4 pm and 8 pm. We have met the first two goals with little resistance. Yay!!

She turned on the new "Cinderella" movie, which was encouraging. She fell asleep for part of it, but woke back up for the end. At this point in the day, we seem to be onto something good with the oxycodone and IV fluids.

Dr Zanati was encouraged when he stopped in. The goal is to discharge to home tomorrow if she feels up to it and the rest of the day goes well. 

We feel very encouraged by all the people praying for Kaylee. Trevor has been keeping everyone up to date on her status with daily Facebook posts. The comments and verses shared are encouraging us. Many people share his post, so we know there are hundreds, if not thousands of people praying for Kaylee and our family around the world. 

I have begun keeping a list of encouraging verses people have shared. I enjoy reading through them and sharing them with Kaylee. She is scared about her upcoming surgery and is smiling less and less. The first few days, she was joking around a lot and keeping things lighthearted. Lately, she sleeps through visits with a washcloth on her head and is smiling less, although today has been a bit better.

I told her about all the people praying. Pastor Dave and Tracy stopped by last night and shared a passage God laid on his heart. Afterwards Kaylee said she enjoyed the verse he shared, which was:

"But we have this treasure in jars of clay to show that this all surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body.

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal." 2 Corinthians 4:7-10, 16-18.

We are blessed to be surrounded by so many people that love and support us. Trace and Kianna have been taken care of seamlessly. We've had friends and family bring us meals. Kaylee's had visits from friends, youth pastors, senior pastors, siblings, grandparents, aunts and uncles, cousins, second cousins, great uncles, and coaches. 

We have also been blessed by this amazing children's hospital. It is nationally ranked and she has received excellent care. Not to mention the facilities are brand-new. I believe we are among the first to stay on the 10th floor. During Kaylee's MRIs she gets to choose a movie to watch and wears headphones. Very cool!

Progress

 

Strawberries from Aunt Sam

In the meantime, Trace is having fun with Bryker and Bruxen

They went to Sky Zone today. Glad he and Kianna are in good hands.

Kaylee woke up this morning with a 2/10 headache after a great night's sleep. Unfortunately, it didn't take long for it to get to a 5-6/10. We finally gave in and gave her another oxycodone around 12:45 pm, which brought it back down to a 2/10. She can function at this level, but not at the 5-6/10 range. In order to enjoy life and to leave the hospital, we desperately need to get her pain under control. 

We are a little confused about the pros and cons of using oxycodone. It is the only thing that controls her pain but the staff are super cautious about giving it to her as it is highly addictive. They have been giving it to her very hesitantly. However, Trevor asked if they will give it more often to get the pain under control, so she can eat, move and enjoy life. The doctor agreed so we started giving it to her around the clock when she is awake. The doctor also ordered her to be put back on IV fluids as she hasn't been drinking enough.

The combination seems to be working as she was able to walk with PT once and ended up listening to "Adventures in Odyssey", eating strawberries, drinking lemonade and resting more peacefully. She also sat in a chair reluctantly for 30 minutes. The progress is encouraging.

I made it outside the hospital today. Trevor has been encouraging me to go for walks and today was my first fresh air. I gave myself a tour of the medical campus and tried to find some of my old PT buildings. I really enjoyed it, along with another chair massage to relieve stress. They really helped.

I've been wrestling with giving Kaylee back to God. I remember when she was a baby how I struggled with fear that SIDS would take her away from me as she slept unattended in her crib. I remember crying and wrestling with God. Emotionally, I finally decided to let go and give her to God knowing that he created her and loves her even more than I do. I've been wrestling with it again. I know God loves her, but my fear in giving her to Him, is that he will take her from me...

Mercy Me came out with a new song titled, "Even If". I heard it for the first time while walking the hospital hallways. It brings me to tears every time I hear it. I'll share the lyrics in time..

Time to Go Home?

 

The youth group made Kaylee a basket of pills and prescriptions to help her feel better.

Kaylee was informed that she won the Math Olympics

Today they did a third MRI, which showed a stable hemorrhage, which is very good. Unfortunately, Kaylee had a constant headache for about 16 hours of agony. They finally decided to give her an oxycontin and about an our later her headache was down to a 2/10. Praise God!

During these good times we try to page therapy so she can get a walk in. She hates getting up and it takes forever for her to motivated herself to do so. However, once she is up she is independent with bed mobility and sit to stand transfers. She requires SBA for walking. Today they walked her 100 ft twice with a pit stop halfway to get her hair washed. Kaylee thought that felt really good. 

We had three separate people from neurosurgery come in today, which was a record. The first one, Dr. Hamadi said that medically Kaylee is stable, so can go home as soon as she can eat, walk and get the headaches under control. He wants us to feel she is ready, so he doesn't care if it is today, tomorrow or a week from now. That was a relief. 

The second one from neurosurgery was Dr. Zanati. He had no idea the other doctor had come and said "so is she ready to go home today or tomorrow"? We quickly relayed the previous doctor's message and our own concerns. We asked about the plan going forward and he said she will have to ease back into school with half days at first. He said, no physical activity for six weeks. She will be seen again in six weeks by neurosurgery. Kaylee has been on anti seizure medication and will continue to be on them until Day 7, which is Sunday. We learned that unfortunately, Kaylee will always be at a slightly higher risk for seizures than the general public. However, the risk for long-term use of anti-seizure medication outweighs the benefits. 

Then third person from neurosurgery was Lonny, who is a physician's assistant. She didn't know what the other two had said, but she is the one the PT's, OT's and nurses like to communicate with. She too asked if we are going home soon. It sounds like discharge is on their brains. Our concern prior to discharge is consistent pain relief. She's had some good moments, but otherwise the pain is so intense she is flat on her back. She can't live like that.

They decreased Kaylee's neural checks to once every eight hours vs once every two hours, which resulted in Kaylee's best night of sleep. She was rolling easily side to side, talking and even rolled onto her belly during the night. 

Our 14th Anniversary

 

The day started out pretty crummy as Kaylee was still nauseous and in lots of pain. Upon Trevor's persistence, she finally was given oxycodone instead of Tylenol to help with the pain. The oxycodone decreased the pain to a 2/10 finally. During this time, she was able to walk approximately 500 ft with SBA-minA with PT. She walked very slowly and often with a hand on her head, as she was still in pain. She pretty much hated the whole thing, but it was good to see her up again. 

We prayed she wouldn't crash again, but unfortunately she had another bad night with neck pain returning. Since this was new, we had to page neurosurgery to make sure she wasn't hemorrhaging since that is our greatest fear. We also found blood in her urine, so they did a bladder scan and a urinalysis. Thankfully it ended up being that her period had started.

Kaylee is hardly eating or drinking. The pain is wearing her out. It is horrible seeing her in pain,

Trevor made me go for a walk and leave the room to relieve some stress. I didn't want to, but it ended up being a really good decision. It was my first time off the floor and was emotional. I ended up getting 15 minute complimentary chair massage, which was a great stress reducer.

Sam and Becki came up to the hospital today and brought Trevor and I sushi and strawberries for Kaylee, She downed them, which was encouraging as it is the only thing beside some peaches and fruit loops she has eaten. 

For dinner, Trevor went and got some cafeteria food and popcorn for us to celebrate our 14th anniversary. We ended up having broccoli salad and guacamole sandwiches. We sat near the window together and ate via cell phone flashlight due to Kaylee's sensitivity to light. We had a little laugh, about our "candlelight dinner" which felt good and was much needed.  

Big Day

Today I was able to listen in on rounds and ask my questions about the 2nd MRI. The PICU doctor is awesome and a great communicator. She really listened to my concerns. She explained the MRI results to mean that it is naturally evolving as it should and the reduction I was concerned about was a color change not a size reduction. I felt good after talking to her. She said she would send ophthalmology to evaluate Kaylee's eyes as we noticed some reading deficits where she missed the first letter 4x in a row while waiting for her MRI. She also complained about blurred vision and no peripheral vision at one point. Thankfully they came and assessed her and found no deficits. Praise God!

They also worked on decreasing the IV fluids so she can get her appetite back and be thirsty. They will also try to switch her IV meds to oral meds.

Physical Therapy and Occupational Therapy came to evaluate Kaylee since she has been on bed rest since discovering the hemorrhage on Sunday. OT came in first and raised the head of the bed to 20 degrees, which she protested. They played a game of UNO with her to get her arms and eyes moving. They noticed that she has difficulty scanning up and to the left. They pooped her out and five minutes later in walked PT.

Kayla, the PT was awesome. She recognized that Kaylee did not want to move anymore because she was nauseous and her head hurt, so instead of making her get up she wrote down some goals. It was around 10:30 am when she came, so she wanted Kaylee to try to elevate the head of her bed 15 degrees every hour until she got to 60 degrees, which should be by 2:00 pm. 

Kaylee was given Tylenol for her head and zofran for the nausea. It took awhile for them to work, so going from 20-40 degrees was super slow, but once they kicked in she was able to get to 60 degrees just as Kayla was returning. Kaylee reluctantly sat on the edge of the bed with her, then stood up, then walked down the hallway, then went to the bathroom for the first time. She then sat up in a chair and watched "Hunger Games". She ended up sitting for 2-2.5 hours before her head started to hurt again. Unfortunately, she needed to have her first bowel movement at the same time, which didn't help her headache any...

By the time she got back to bed, she was pooped and had a pretty bad headache. Around this time we got orders to transfer off PICU to the 10th floor on pediatrics. She went via wheelchair and was miserable. She complained of 6/10 pain in her eyes, which was new causing us to page neurosurgery, who quickly came to assess her.

This was one of my personal low points. I had been on such a high from seeing Kaylee walk again, enjoy a movie, and joke around that when she crashed due to the pain, I was devastated. I had hoped we were improving and then she regressed...

Trevor's Home and We Have a Plan

 

Trevor finally made it to the hospital at 3 pm. He was full of emotion and jet lag. It was so good to be together again. Kianna and Trace came to the hospital today for the first time. They seem to be doing okay. It's a lot for all of us to process. Kaylee has been a trooper! She was excited to show them her TV screen that control everything: music, movies, lights, video games, etc., Unfortunately her head hurts too badly to sit up, so she has just been lying flat.

Kaylee had a second MRI today to make sure the bleeding has stopped. We waited all day for the results and got conflicting results. One doctor in broken English told us the neurosurgeon told him it was "extended", which sounded to us like it grew. However, the neurologist pulled up the image for us later and the impression seemed to indicate it had "reduced" slightly. Ugh! Which one is it? Being that this is a teaching hospital we constantly have lots of doctors and residents in and out of the room evaluating Kaylee, but they don't seem to communicate or know what the other one has said or done...

Finally, Dr. Buatti, a radiation oncologist, came to talk to us. He said that he, the neurosurgeon and neurologist all met to discuss the best course of treatment for Kaylee. They decided that would be radiation surgery. It is an outpatient procedure that he must wait 4-6 weeks to perform, as the brain needs time to heal. Apparently, as the blood clears out the visibility and accuracy improves for the surgery. 

It sounds kind of scary. Apparently, two small holes will be drilled into her skull anteriorly and posteriorly, so they can attach a halo to keep her very still. Then they will perform a cranial angiogram to give them precision as they use a gamma knife to obliterate the AVM. The gamma knife applies radiation to the AVM at various angles. It was described as a one time procedure that takes three years to fully work. Every year she will receive a CT scan or MRI to check on the AVM. Without surgery there is a 3% chance of rupture each year, but Kaylee already succumbed to those odds, so we'd prefer to eliminate the risk. 

After the three years, she will no longer be at risk of the AVM rupturing as it will be gone. Praise God! Thankfully after the procedure she can return to all of her normal activities: basketball, soccer, etc,. However, there will be three things she cannot do: power lift, scuba dive and play a horned instrument. Kaylee was a little concerned about not being able to scuba dive in Hawaii, but once we told her we snorkel not scuba dive and explained the difference she was fine. 

Kaylee has been NPO (nothing by mouth) since they found the hemorrhage. They kept her NPO in case she needed immediate surgery. However, now that we have a plan she was given permission to eat. She had been talking about how hungry she was, so she immediately ordered lasagna, peaches and milk. Unfortunately, once the food came she only ate the peaches. 

Kaylee's Brain Hemorrhage

We arrived at the University of Iowa Stead Family Children's Hospital via ambulance. Kaylee began joking around lightheartedly and said "I'm sorry mom for the corny jokes, but I'm trying not to think about the other stuff." She was precious and amazed those around her. 

Upon arriving at the UIHC, they ordered a MRI and MRA. My mom, Becki, Sam and Stacie met us at the hospital and sat with us as we waited for results. The MRI/MRA confirmed the intraventricular hemorrhage involved a portion of the posterior cerebral artery. An angiogram was ordered to figure out what caused the brain hemorrhage, which was necessary, so they would know how to treat it. 

The angiogram was very emotional. She had to be intubated and put to sleep for the procedure, so I had to sign lots of papers alerting me to the risks, which were very scary. It was also the first time they wouldn't let me stay with Kaylee. She started crying as soon as we were separated and then I lost it. 

In the meantime, Trevor made it from Toulouse to London, but then missed his connecting flight in London to Chicago by minutes. He was devastated. However, since he wasn't on a flight we were able to talk to each other and cry together during her procedure. It ended up being a blessing in disguise. 

The angiogram revealed the cause of her brain hemorrhage to be an arteriovenous malformation or AVM. An AVM is where an artery meets up directly with a vein, instead of the normal blood flow pathway being an artery to an arteriole to capillaries to a venule to a vein. The pressure between the artery and vein was too great causing it to rupture. Thankfully hers is small 5 mm x 5 mm and is located in an optimal location near the L ventricle vs inside the brain. The latter is important as she is neurologically intact meaning she can move her arms and legs equally and has no brain damage outside the ventricle. Her main symptoms are a terrible headache, neck pain and nausea vs a seizure which is the other way an AVM presents. 

We learned that AVMs are congenital, so she was born with it, but thankfully they aren't genetic, so the other kids aren't at risk. They are very rare. They only rupture 3% of the time. Unfortunately, now that it has ruptured there is a 15-65% chance it will rupture again in the first year and after that it returns to a 3% chance without treatment. So now they need to figure out the best way to treat her AVM.