Tuesday, July 07, 2015

Updated Site

We have made some updates on Casey's main webpage- caseybarnes.org.  We will leave this blog up for anyone that may have saved links to direct posts, but all future posts will be done within Casey's page.  All of the past post have been copied to her page as well. 

Friday, July 03, 2015

Swimming Pools & Movie Stars...

A few weeks ago we were asked to be part of a pretty cool project.  There is a new website going up for families like ours (with kids that have special needs).  This website is all about support for parents, and not so focused on diagnosis and medical details.  The website uses videos to share ideas, inspiration and offer support.  They wanted to come out and capture a day in the life of Casey.  They came out last week to meet us and get an idea of some of the things they wanted to include.  They saw that Casey is all personality and has a bunch of friends.  They asked if we would be willing to have some friends over and let them get Casey being 'one of the girls' in the pool with her friends.  We try to do this a lot anyway, so of course we loved the idea.

As luck would have it, one of our friends for Los Angeles is in town right now and asked if they could come by today.  We explained that a film crew would be here, but if they were okay with it come on over.  Casey got to hang out with her very first friend, Patricio, and his little sister, Alejandra.  She was so happy to see them.  Last time they were in town Alejandra was much younger.  She and Casey took to each other right away.  It's pretty special to watch other kids and how they connect with Casey.

After our friends from LA had to get on the road so we took a quick lunch break and then some of our friends from the neighborhood came over to swim and play.  Casey's little friends were pretty excited about being in a movie with Casey. 

We all played in the pool for a little while so they could get some footage of Casey with her friends.  After, Casey went to the swing for a little bit for some other shots they wanted to capture.  Casey's friend got to do an interview on what it's like to be Casey's friends.  It was pretty cute to watch them do their interview.

When we finished outside we had a few more shots to get inside.  The girls came in and read Casey a story and Berkley made sure that the camera man got everyone's good sides. 

Casey has some pretty great friends and spending an entire day with friends (morning and afternoon) was wonderful.  She had such a great day.  When she has a good day, we have a good day.  The footage is on it's way to editing now.  Once we get a link to the final footage we will share it. 

We hope everyone has a fun and safe 4th of July!

Sunday, June 28, 2015

Summer is Finally Here!

The weather has been crazy this year.  I know we needed the rain, but I was starting the wonder if it was ever going to stop.  Usually by this time of year we have had multiple 100+ degree days, everyone is either tan or burned, no one wants to get in their car if it has been outside for more than 5 minutes, and there is no doubt that it is a Texas summer.  This year has been wet and fairly cool.  The few times the sun has come out, I have either been sick or sleeping from doing so many night shifts lately.  Poor Casey was starting to have pool withdrawals.

Friday was a beautiful day.  I promised Casey that as soon as I got up I would take her swimming.  She had been bugging her nurse to go out to the pool all morning and was so excited when I brought in her swimsuit to get her ready. 

We were only out there for maybe 30 minutes, but she was so happy.  After the pool she got to sunbath a little too.  She is so funny.  Before her pool she hated to go outside at all.  Now, she doesn't want to come back in.   Hopefully this week the weather hold up and she can have some friends come and swim with her.  The only thing better than pool time is pool time with her friends. 

Casey got to visit with her Uncle Dan this past week.  Tim is one of seven and I am one of four.  That makes for a lot of aunts and uncles, and bunches of cousins.  Casey has now met all of Tim and my siblings.  She was in a funny mood when he was here, really quiet and tired.  His job has him just up the road fairly often over the next year or so, so hopefully he can see more of her personality on his next visit.  Her uncle Ken may be in town again soon too.  I know it's hard to fit family in when you are traveling for work, but we do love that some of Tim's family comes our way for work on occasion.  It's a nice little treat. 

We have a few doctor appointments this week, including the puberty doctor.  Hopefully we will have some good updates in the next few days.

We are still having some trouble getting our night shifts covered- hence my 2:30AM post.  We have a nurse that is picking up Wednesday thru Friday that just started last week.  She only works 3 days a week, and she has already called out twice and had one day that she could not work.  I am hoping that is not a sign of things to come, but I am going to see how things go this week.  Our Monday and Tuesday night nurse has been picking up some extra shifts on Wednesdays lately so we went from 3 nights covered a week to 4 (really since the new nurse hasn't done her full 3 nights yet).  It's not ideal, but at least it's something.  We still need to find a nurse to pick up Saturday and Sunday nights.  Hopefully the agency we use can find someone for us soon. 

I think that is about it for now.  We hope everyone has a great week!

Saturday, June 20, 2015

Medical Stuff

This post is for those that like to read about science and medicine and want to know more about what is going on with Casey medically- as opposed to our normal social or general updates.  If you like to read the medical stuff, read on.  If you are bored with this type of detail you may want to skip this post.

Many of you have heard me joke that we add at least 1 new diagnosis every 6 months and at least 1 new specialist every year.  While I say it jokingly, it really is true.  Today's appointment was one of these instances. 

Earlier this year Casey had a CT scan to look at her cholesteotoma, but they were also looking at an odd dent that we noticed along Casey's skull.  When we saw the ENT to follow up on the ear issues they didn't really have much to offer in regards to the dent readings in the scan.  We have been trying to get in to see Casey's physical medicine doctor for a few months now.  Life keeps happening and we have had to reschedule a few times, but we finally went and talked to him this morning.

He explained the dent and told us what it means moving forward.  Basically the skull has fissures that allow the skull to grow in all directions as the brain grows.  When Casey was born she had a lot of necrosis throughout her brain.  The lack of oxygen caused Casey's brain to swell, much like a sprained ankle would.  As it swelled against the skull parts of the brain started to die.  This is very common with brain injuries.  After the swelling goes down doctors use MRIs and other images to determine the extent of the damage.  For Casey the damage was severe and global (affecting all areas of her brain).  Some brain cells will regrow on their own, and we helped Casey as much as we could with treatments like stem cells, hyperbaric oxygen therapy, etc.   While some of Casey's cells did regrow, she lost a lot and all of her medical complications are a result of that part of her brain not being healthy/complete.  This is something we have known since very early on.  We are now learning some of the long term effects of this type of injury/damage.

As Casey grew there was a lot of empty space in skull.  The ventricals that come in from the spine and feed the brain stem saw the extra space and spread out if you will.  In some kids the ventricals swell or become enlarged with fluids and if there is not extra space in the skull the fluids can cause pressure against the skull and lead to damage.  For these kids they are diagnoses with Hydrocephalyis and typically they need a shunt placed in their brain to drain the fluid and relieve the pressure.  This is NOT what we are seeing with Casey.  Casey has the much lesser severe side of an enlarged ventrical that the doctor referred to as Ventriculomegaly.  Since there is extra space in Casey's skull and the enlarged ventricals are not causing additional complications we simply make note of it, but there is no treatment needed.  This has likely been something that Casey has had since very early on, but this was the first time someone really went over it with us since it was identified in her recent CT scan.

Ventriculomegaly does not explain her dent though.  The dent was actually explained as Craniosynostosis.  Again, since there was extra space in Casey's skull her brain did not trigger the skull to grow evenly in all directions.  Casey's skull has grown lengthwise as her brain has developed, but the width has stayed stationary.  The lack of growth along the inactive fissures led to the fissures fussing along the base of her skull.  Most likely these fissures fused a long time ago.  All of Casey's recent growth spurts have led to the unfused fissures to grow as they should, but have made the dent along the fused fissures noticeable.  The craniosynostosis not only explains her long thin head shape, but it also explains a few other things.  Casey's pallet is very high and narrow, and has gotten more so over time.  As Casey has grown the facial bones, such as her pallet, have moved into the extra space in her skull.  It stands to reason that Casey's chronic ear infections and the cholesteotoma are also very likely related to how her skull and features have grown and shaped around the extra space, in particular the eustachian tubes.

The doctor told us that in some cases patients follow up with a neurosurgeon that can reshape the skull and/or the deformed growths.  I told him that there is nothing that anyone could do that would be worth the risk of brain surgery for Casey.  He quickly and strongly agreed that the surgery path does not make sense for Casey.  Much like the Ventriculomegaly, the Craniosynostosis is something that we are now aware of, it has been here for likely a very long, and there is no treatment necessary.

So we have 2 new diagnosis, newly labeled even though they are not new issues with Casey.  Luckily these do not include a new specialist.  Heck, these don't even include a treatment plan- just a little education.

We talked about another possible diagnosis to add to Casey's list.   This one is not actually added to the list yet, but something for us to examine further.  Casey has always had an issue where she can go from relaxed and happy to totally out of control in seconds.  Sometimes we think this may be a result of pain, sometimes we have contributed this to respiratory distress, and other times we have been left scratching our heads as we have no clue what triggered it and nothing we do seems to help get her to calm down.  When she was younger we had her on some anti-anxiety medications that are often used to help treat seizures and hi tone as well.  While this medicine did help keep her relaxed, she was too relaxed.  Casey slept all the time.  We eventually took her off of this medication.  When she had her J tube surgery in 2013 the doctors added a similar drug when Casey was not responding to pain medications after the surgery.  The first few days on the new drug were great, but after a few days she started sleeping all the time again.  We could not wake her up at all.  We ended up taking her off of that drug and with the help of her neuro we found a "cousin drug" that did not have the same sedating side effect.  We have used it for about 2 years now and it has helped a lot.  We use it at night to take the edge off and help her get good sleep.  We also use it on occasion when she has her freak outs that don't seem to respond to any other treatment.

We told him about how we use this drug and that it really is the only thing that helps Casey stayed relaxed enough to not cause further contractions and joint issues from her freak outs.  The doctor talked to us about Dysautonomia.  He said many brain injury patients have this and it effects their fight or flight reflexes in a very dramatic way.  These patients will go from calm to completely freaked out quickly- much like we see with Casey.  Again, some of these episodes with Casey are likely pain and/or respiratory related, but I think it's very possible some may not.  He went on to talk about some of the other triggers that he sees with dysautonomia episodes.  In many cases they will see elevated heart rates, increased blood pressure, GI issues/reflux, extreme sweating, and many other things.  We have been dealing with body odor and odd sweating with Casey for many years.  We originally thought the body odor was possibly early puberty, but many years ago all we saw was the BO and she didn't have other puberty symptoms.  She does now, but for many years it was just the BO.  The doctor went on to talk about how this condition is deep rooted in the brain and is not a learned behavior, but really a reflex.  Casey is missing her gag, suck, swallow and blink reflex.  When I look at the big picture of everything that he told me about dysautonomia I am very intreged and want to learn more.
Click for larger
 Casey did not get the 3rd diagnosis, dysautonomia, added today.  We are going to do some of our own research and talk with her neuro in a few weeks when we go in to discuss the recent EEG.  It's possible that this is something Casey has, and it may explain a few things.  On the other hand, it may not.  Tim and I have some homework/research to do and I am sure that will lead to many questions to review with her doctors.

On the puberty topic, we are adding a new specialist later this month.  In addition to the BO, we are seeing many other symptoms now as well.  Earlier this year we had a care conference with many of Casey's doctors.  When we brought up our puberty concerns they told us about a specialists that treats complex kids like Casey.  We are looking forward to talking to her and getting a better plan in place for the day that we know is coming soon.  We really worry about complications that may come with full puberty.  We are already seeing increased seizures that may be related, but if Casey has cramps and other pains associated, or if she is at risk for infections and other issues we need to be aware and ready.

We have 2, possibly 3 new diagnosis and a new specialists on tap for June.  I hope that covers us for a while now.  We've filled our quota :)

Thursday, June 18, 2015

Rough Few Weeks

It has been a long, rough few weeks around here.  One of our night nurses that was working 5 nights a week was not working out.  Early May we decided to let her go.  The agency we use sent out a couple of nurses, but none that worked out.  Luckily our other night nurse has been picking up an extra night each week.  That still leaves me with 4 nights a week that I am up all night with Casey.  I wish she was a kid that I could just sleep in her room and be there if she needs me, but she really needs someone awake all night.  Between suctioning, medicine, her food, diapers, oxygen, positioning and occasional breathing treatments she keeps me busy all night.  I usually drag Tim out of bed around 6 and he takes her until the day nurse comes in at 8.

Used to I would sleep from 6-10:30ish after a night shift and I would be okay.  Since I have had to do so many lately 10:30 has moved to 12:30 then as late as 1-1:30 on a lot of days.  My immune system is very weak when I am not sleeping well too.  I started to get sick mid-late May.  The doctor told me it was just a respiratory infection, gave me a round of antibiotics and sent me on my way.  When I was not better after 2 weeks I went back and they gave me another antibiotic and added an inhaler.  A couple days later I was feeling even worse so they sent me for a chest xray.  As luck would have it, I ended up with pneumonia.  Not walking pneumonia, the full pneumonia.

I have been miserable!!!  I finally got a few good nights in this week and yesterday was the first day I actually got out and didn't cancel everything on my calendar.  Poor Casey has missed so much.  I have canceled/rescheduled every appointment, every activity, everything for the past 5 weeks now.

Our close friends had their baby last week.  The plan was that we would keep their daughter, Casey's "sister", while they were in the hospital.  Casey and Sam were both so excited about their slumber party.  I got the room ready and took a nap, hoping to feel better by the time I got up.  Casey was looking forward to having Sam come over all day.  If you talked about her slumber party she would get all excited.  The doctor called with the xray results late that afternoon.  I talked to my friend and we all agreed, especially with the baby, that it would be best to postpone the slumber party.  Casey was bummed, but luckily she is pretty forgiving.  I promised she could still have her slumber party, but it will just have to be this summer sometime.  I am sure with the new baby that Sam's mom will be more than happy to have us take her for a night and give them a little break.

Casey is wrapping up a 72 hour Video EEG right now.  Someone came out to the house Tuesday morning and got her all wired up.  Her head is covered in electrodes.  They setup a video camera in our living room and another in her room.  It's great that we can do this at home and don't have to check in to the hospital.  Casey is not a fan of the electrodes, but she is doing the best she can to tolerate them.  They come early tomorrow morning to take them off and pack up all the equipment.

Casey has had more seizures lately and her
seizures are changing too.  Part may be just her growing, part may be that she is starting to show early signs of puberty, part may even be the crazy weather we have seen lately.  So many things can effect her seizures.  We hope that the doctors are able to get some good information from this test and that we can get a better plan for moving forward.

We have a few routine appointments over the next few weeks for Casey (many that should have happened over the recent weeks but were rescheduled).  We also have a new nurse that started last night.  I will be up training her this week and hopefully by this time next week I can get a little more sleep.  She is only taking 3 nights, so we are still on the hunt for a nurse to pick up the other 2.  I am very hopeful that this one will work out.  Please keep your fingers crossed that she is a good fit and picks up on Casey's need quickly.  I am ready to get back to our normal schedules and routines- especially the sleeping at night part.

Thursday, May 28, 2015

Casey's 9th Birthday Party

On Saturday, April 25th, Casey had a fun birthday party in the park.  A bunch of her friends came and we had a pavilion all to ourselves.  The kids played games, a clown came to paint faces & make balloon shapes, and we of course had cake.  It was really hot that day.  When we first got there and were setting up Casey got a bit overheated.  We had to take her back to the car and blast the AC for a little bit to cool her down.  When she was finally cool enough to try again we dipped her drool cloth into the melted ice in the cooler and kept that around her neck (re-dipping every few minutes).  The cool rag helped a lot.  Towards the end of the party she did get a bit overheated again.  We decided to wrap things up and get her into the AC to stay.  She loves to be around her friends, but the weather takes such a toll.  She has always been sensitive to heat and I think the older she gets the more sensitive.

Casey spent the rest of the afternoon/evening recovering from the party.  We had the house as cold as we could get it and she just rested.  She seemed to be much better by the next morning.

We had the cake done by Icing Smiles again this year.  It's a great program for kids like Casey.  I was a little worried.  The baker that signed up to do Casey's cake had to cancel last minute when her son got sick.  Luckily she has friends that are also bakers and was able to get someone to take over.  Everything worked out great and the cake and cupcakes were a huge hit.

The original clown that we hired had to cancel as well due to a schedule conflict.  Luckily she had a clown that could take over for her.  The kids loved Devo the Clown.  We even had a party crasher.  One little girl playing in the park decided that we were having way to much fun so she just wondered in and got in line to get her face painted with the rest of the party. 

We didn't take a lot of pictures at the party, but here are a few:

Casey with her baker and the cake in the background

A quick family pic

A very hot Casey

Kids in line for face painting

Casey with Devo

Saturday, April 18, 2015

Easter, Ponies and More...

Wednesday night after the nurse came in Tim and I both crashed into bed.  It felt like it had been such a long week, then we were reminded it was only Wednesday!!!  We have been going nonstop since our last post.  Some good, some not so good, some medical, really it has been some of everything over the past month.

The weekend before Easter the local accessible play ground, Play for All, had their annual special needs egg hunt.  We have been able to take Casey since the program started 3 years ago.  She really had a good time.  It is open to children with special needs and their siblings.  Casey takes her honorary little sister to help her collect her eggs.  I am not sure which one has more fun.  After the egg hunt we went for an early lunch and Casey had a great time.  She loves to go out to eat even though she doesn't eat.  I guess she just likes the feel of a restaurant.

A few days after the egg hunt we met with anesthesia up at the hospital.  Palliative joined us so that we could all talk about our concerns with any procedure, but specifically the CT scan that she needed for her cholesteotoma.  We had sent a letter before hand (a very long one) that laid out our concerns.  I never know what to expect when we do this.  I HOPE that the specialist reads what I write before hand and puts some thought into my concerns.  There have been so many times in the hospital over the years that doctors have come in and not bothered to read Casey's chart and notes at all.  Many times they come in and all they have read is her name so they refer to her as "him" or "our son".  While we hoped that the letter had been read, we were ready to have to explain everything in detail and put up a huge fight to get them to work with us on the scan.  To our surprise things went very different.  Not only had they read the letter, but they had studied it, talked to other members of Casey's medical team, and offered the ideal solution to us with out us having to fight for it at all.  They said they thought with Casey's issues that it would be best for us to position her, for us to manage her airway, and for us to stay by her side the entire time.  That is EVERYTHING we asked for.  When we got on the elevator to go home after this meeting we were kind of speechless.  Casey's nurse finally said "wow, that was almost too easy."  We felt so much better about the scan after the meeting and agreed to set it up.

The Saturday before Easter Tim had to head to India for his annual work trip.  It is always hard when he is gone.  He is stressed and worried about Casey getting sick while he is gone, a nurse calling out and me not getting a break or sleep, etc.  And I am exhausted, even with the nurses covering all of their shifts, just having to be the only parent for a week.  Luckily, Casey did pretty good MOST of the time while he was gone.  We set up a full week of fun stuff to try to keep her busy so she would not freak out when she realized Daddy had not been around in a few days.

Monday we took Casey to a miniature horse farm that one of her friends told her about, Northwind Farm.  They have a special adaption program for kids with special needs.  For a monthly fee Casey is able to adapt one of the ponies and then she can go visit as often as she likes (or in our case as often as she is up for it).  She met all 12 of the ponies and picked the last one she met, Lil Red.  We have not been back yet, but hopefully we will make it out there this week sometime.   Tuesday was not a good day, but on Wednesday she had music.  She made great choices, she sang, Wednesday was a good day. On Thursday she got to talk to Daddy when he called as she was waking up, so that set her up for a pretty good day.  She did school and then some of her little friends came by that evening with dinner.  She always loves to see her friends. On Friday we took her to see 'Home'.  She loved the movie.  She stayed awake the entire time, she was chatty at all the funny parts. She seemed to really enjoy the movie.  She was wiped out after and not able to make it to her Girl Scout meeting, but she recovered by early evening.

On Saturday she got to watch ponies on the big TV (the new season started Easter weekend).  Then my family came over for a visit.  She got to hang out with her Cappy, Grandpa John, Great Grandpa and aunts Megan & Molly.  She even got to have some chocolate cake (or at least the icing).  Cappy & Grandpa John stayed the night, but everyone else left that afternoon.  Casey's cousin was running the Cap10K on Sunday morning so everyone had to get home for some sleep before the race.  He finished 2nd in his age group and 80th overall.  I think there was over 25K runners, so that's kind of awesome.  Way to go, Riley.  After the race Cappy & Grandpa John came by to tell us about it, then the had to get back to Houston.  Casey and I just relaxed Sunday afternoon and then Daddy got home just before dinner. 

Tim was pretty tired after traveling so he spent a little time with Casey then went to bed early.  Monday was her CT scan, so Tim took the day off in order to go with us, and recover from traveling some.  The scan itself went really well.  They were ready for us, they let us get her positioned, then her nurse and I stayed with her.  She was so brave.  When the tube started spinning and they moved her into is, she did get scared.  She cried a little.  Her nurse was on one side and I was on the other and we talked to her the entire time.  She got through it and then Daddy came in and picked her up to snuggle.  She was not happy about it at all.  The rest of Monday we just let her rest and watch movies on her iPad.

Tuesday she finally made it back to dance.  She was so excited to see her friends.  She has not been back to dance since her recital in February.  They took a break, and she has not been up to going since they started back up.  I was really glad she finally made it this week.

On Wednesday after school we took her to the ENT to have her ears checked and to review the scan results.  The scan showed that the cholesteotoma is not is a critical state.  We can continue as we have been with regular cleaning and monitoring.  That is the best outcome and what we were hoping to hear.  We will have to do another scan 6-12 months from now, but her doctor is happy to keep going as we have been.

Yesterday and this morning Casey has been having a hard time breathing.  She is on bipap right now and it looks like it is already helping.  We are planning on laying low over the next few days so she has a great birthday and a great birthday party next weekend.  Hopefully the weather cooperates as well.  Here are a few pictures from the egg hunt and the pony farm.  We will post more after her party.  Until then, we hope everyone is doing well.