Happy New Year (almost)!

Well, we are still hanging out in the hospital.  Alli is looking much better.  We are just waiting for her oxygen to catch up with how she looks.  The doctors have told us that the virus can run a course of 8-21 days.  This seems to be on the longer end for her, but we are patiently waiting it out.  The good news is that they feel her lungs will re-inflate and work just as well as they did before.  They just need some extra help right now.  She is off of bi-pap and on high pressure oxygen.

Jason has been spending days at the hospital and I have been spending time with Samantha, Linda, and Jay.  Yesterday we took Samantha to an indoor play area and she had a blast.  The weather here has been cold and rainy, so we needed to get her out of the house.  

Friday, while Jason was at the hospital, I met with the nutritionist regarding a blended food diet for Alli.  One of the reasons we felt strongly about putting a g-tube in was the ability to put Alli on a more normal diet from whole food sources (not to be continued with Whole Foods sources - which would really strap the budget - but I digress).  We are hopeful that this will help build her immune system, improve her reflux (hopefully getting her off of reflux meds), and help to regulate her digestive system (in other words, help her poop more efficiently and regularly :) ).  Initially the nutritionist and I had a different approach as to how to achieve a healthy and balanced "home brew."  However, we worked our way to common ground.  Her initial suggestion included some carnation instant breakfast and a wide variety of jarred fruit and vegetable alternatives.  I'm not sure why anyone would take their kid off of formula and put them on a "home brew" of processed food.  What is the point of that!?  So, I explained (patiently as possible) that we weren't interested in a processed food diet, and that we were hoping to put together a 'brew' with as many raw and organic ingredients as possible.  So, we found common ground at a brew that includes whole milk, kefir, quinoa, fresh fruit, fresh vegetables, kale, flax, evoo, juice, hard boiled egg, etc.  MUCH better.  I also managed to get a recommendation for a powdered whole vitamin, as opposed to her suggestion to just crush up a flintstones and call it a day.  By the end of the conversation I believe her exact words were "you don't seem like the parent who wants to use the flintstones - so here is another alternative."  I'm glad we finally got on the same page.  

So now, the OCD side of me kicks in.  I have my Vitamix, which we were able to get at a discount thanks to some help from our GI.  For anyone that has a medical issue that requires blended food - Vitamix offers a 25% discount and ships for free!  I have my starter recipe with all of my raw and organic foods.  Now, I am obsessed with achieving the perfect combination of the most healthy foods possible for Alli.  Ridiculous.  Just about any combination of fruits and vegetables will be better than the formula we are giving her and at some point, I will settle down and come up with a good rotation of mixes, but I like to get things right the first time.  So, now I have to get my head around how and where to start and just bite the bullet and do this.  It will be best for her and I think may actually be good for the family, in general.

We hope everyone has a wonderful start to the New Year!  We look forward to the coming year with great anticipation as we await the arrival of our little guy and the celebration of Carrie and Luke's wedding...and well...everything else that will happen in between.  We have been so blessed - truly.  Samantha is thriving at home and at school and is so excited about the arrival of her little brother.  If Alli had undergone anything similar to this last year - before or after her heart surgery - it would have been a much different situation.  So, despite the frustration of being in the hospital, we have the balanced perspective to know that we are much better off now than we would have been then.  Her seizures are settling down and I'm confident we'll get to some (hopefully permanent) level of seizure control in the coming months.  Her heart continues to show good function.  There is much to be thankful for in light of our immediate circumstances.  And though we had different plans in mind for our holiday break, we are fortunate to not have had to juggle work in the middle of all of this.

Happy New Year!

Christmas 2012

It's the most wonderful time of the year!  That thought keeps ringing through my head this year. 

While I was in Memphis, Jason and Samantha were battling colds at home.  I had hoped Alli and I would miss out on their germs being so far away, however, they persisted in to that next week and sure enough Alli started getting symptoms early last week...just in time for Christmas.  So, here we are, day 5 in the picu at Scottish Rite, on the bi-pap machine.  I brought her in Friday night when her oxygen requirements were beyond what we could give her at home and she started to show signs of having to work too hard to breathe. 

Fortunately, Jay and Linda (Jason's parents) arrived early Saturday and have been helping us hold down the fort the last few days.  Jason stayed with Alli while I took Samantha to the Christmas Eve children's mass.  Given the number of children and the associated holiday excitement I could relax a little bit about her usual church inspired chatiness and antics.  I went home early Christmas morning and was there with her while she opened her presents.  Jason left shortly after breakfast to be with Alli and we all joined him later.  Samantha played hospital bingo with Jason and me while Linda and Jay spent some time with Alli.  Scottish Rite does an amazing job of bringing Christmas joy to the children here.  Alli had a sack of presents from Santa waiting for her when she woke up.  Dinner was brought in for families.  They had bingo in the lobby for patients and families.  They really do their best to make sure the day is special for patients and families.  We celebrated Christmas dinner later that day with Samantha's friend Gabriela Elisa and her parents.  The girls thoroughly enjoyed themselves and played so nicely together. 

We gave Jay and Linda a break today and they are in Raleigh until Friday visiting with Jason's brother and his family.  We have our hospital routine down pat and are enjoying some individual quality time with SJ during the day.  Then we join her together for dinner at night during change of shift at the hospital.

Alli is doing ok.  She is bummed out about the bi-pap.  The mask is more invasive than her usual oxygen cannula, but is necessary at this point to ensure adequate oxygenation and protection of her heart.  They did an echo earlier this week to make sure her function looked good and all appeared to be status quo.  So, we are grateful for that.  Prior to bringing her in, we were starting to see some progress toward sitting up and propping.  I am hopeful that will return once she is feeling better and off the machine.  It is hard to judge what is going on with her seizures when she isn't feeling well.  She doesn't appear to be having seizures while in bed, but I did notice a couple of head drops when I sat her up the other day.  She is due for another eeg next week (assuming she is well enough), so we will address the head drops then.  If there hasn't been sufficient improvement in the eeg, then we will explore a couple of other options - either the ketogenic diet, or a drug called Onfi (clobazam).  We have another infantile spasms friend that has had some success with Onfi and are hopeful that if the depakote/vigabatrin cocktail doesn't knock it out for Alli, that the Onfi will do the trick and we can hopefully put this behind us.  In the meantime, we are trying to be patient (and persistent) as she works her way through this.

We are looking forward to the arrival of my parents (weather pending) next week.  It is so nice that Samantha will be able to spend time with both sets of grandparents over her holiday break.  She always enjoys the special treatment and extra attention that only grandparents can bring.  Grandpa John's to-do list is growing by the day.  Tile to be fixed here, painting there, ceiling tile down the basement...

We hope everyone has a happy new year.  We are looking forward to see what the year will bring.  We are anxious to meet our new little guy and get his room set up in the coming weeks.

Update Day 4

We're home!  Goodnight!

Update Day 3

There was a man at the Fedex house on Monday morning who helped me get our belongings assembled before coming over to the hospital.  He was very kind and kept an eye on Alli while I loaded up the car and put together the things we needed to bring with us in the morning.  I happened to run in to him this evening.  He walked by my room and I waved him in to see how things are going.  He is here with his brother and nephew from Tulsa, OK.  His nephew is 18 years old and has seizures.  At 8 years old he had a section of his brain removed because they thought that section of the brain was causing his seizure activity.  Unfortunately, that proved to not be the case, as he is still having seizures.  To boot, this kid's mom died 6 months ago from cancer.  So, the uncle is here helping to support the dad and nephew through the process.  Please keep this family in your prayers.  They have been trying all week to provoke a seizure in his nephew and have so far been unsuccessful.  He has gone 18-19 days without one, which is the longest he's ever gone.  It is incredibly frustrating for them.

Today was a quiet day. They continued to monitor Alli by EEG. I pushed my red button a few times and we've made some adjustments to her medication. We are in the process of increasing her depakote to 750 mg/day. Tomorrow will be her first full day on this dose. We are hoping to see a reduction in myoclonic and atonic seizure activity. Her myoclonic seizures manifest by an extension of her arms. Her atonic seizures manifest as a head drop. Some of these movements are very subtle and hard to tell that they are even seizure activity. It is harder and harder to tell when to push the red button. 

Update Day Two

Today was much less eventful than yesterday, but much more informative.  Alli slept quite a bit throughout the day.  I think she was pretty worn out from yesterday's festivities.  Today was primarily focused on EEG monitoring.  I pushed the red button a handful of times for suspicious events.  I was able to speak with the doctor about some of them this afternoon. 

We experimented with reducing the dosage on one of Alli's medications.  I would say based on what I saw that we will be returning to our original dose tomorrow, but we'll see what the doctor says.

We spent some time talking about Alli's MRI.  Her scan came back better than he expected, based on her history.  There is some evidence of the impact of the vigabatrin in the scan, primarily as it relates to some of the fluid in the brain.  Those levels can fluctuate.  The microhemmorages that have been picked up on both scans he feels are insignificant to her overall neurological picture. 

I don't think we are going to get a good long range picture while we are here.  The doctor feels it is too early to tell what her neurological picture will be further on down the road.  So, we'll just have to be patient.

Otherwise, there have been lots of texts, emails, facebook posts, etc. of support.  All of which are very much appreciated.  We are accomplishing a lot by being here.  So, thank you for the love, prayers, and support!

In other news, Snickers had surgery today to remove several cysts.  His breed is prone to having them.  They will be sent off for biopsy.  Jason reports that he was an excellent patient and has been full of pep throughout his recovery.

Samantha is doing well.  She had an impromptu play date this afternoon with her friend, Gabriela Elisa.  The pictures suggest she had a fun time full of tea parties, good food, and great company.  Many thanks to Gabriela's family for helping us out in a pinch!

Update Day One

It was a busy day today.  Alli had labs drawn, an MRI, and is set up on video EEG.  She made it through anesthesia with flying colors.  She is resting comfortably now, hopefully for the night.

I met with Dr. Wheless this morning.  I must say, we are so blessed to be able to work with both him and Dr. Flamini.  We talked primarily about her medical history, with obvious emphasis on her infantile spasms.  The objective of today and part of tomorrow is data gathering.  I imagine we will start to hear some initial impressions tomorrow afternoon.

Thanks for all of the support and well wishes.  We are both doing great.  The food is good and I have a great view from Alli's room!

Advent and Neurology

Christmas is without a doubt my favorite time of year.  I have always loved it.  As a child it was great fun to get together with family, to exchange gifts, to celebrate with Aunt Ronnie and Sr. Jan on Christmas morning.  I have nothing but good memories about Christmas; even the year Paul threw up on Christmas Eve after opening the Mickey Mouse bank.  That was a good Christmas too.

As an adult my love of Christmas has really turned in to a love of Advent.  The magic of Santa and exchanging gifts wears off, but there is a renewed sense of hope in preparing for the birth of Jesus and the coming of the New Year.  I always find it ironic that Christmas is such a joyous time, but the readings at mass really tend to be more cautionary and not always the "feel good" sections of the new testament.  Whereas the celebration of Easter conjures these hope filled and joyful readings, but we're met with the resurrection.  It isn't that I don't get what is going on.  It is just dichotomy of what is transpiring that I find so interesting.  So it seems that the last two years have found us preparing for Christmas during Advent, but also preparing ourselves for what lies ahead with Alli.

Last year at this time we were adjusting to life at home, post op with Alli, learning how to give medication, and trying to keep her as comfortable as possible.  All the while rejoicing that she appeared to be seizure free.  The preparation for Christmas was somewhat filled with anxiety given our new circumstances.  Alli wasn't feeding well.  It was difficult to administer multiple medications by mouth.  But, there was great joy in beginning this new phase of her life, post cardiac repair.  She had a new rosy hue, a repaired heart, and we would meet the other challenges as they came.

This year we find ourselves at LeBonheur Children's Hospital in Memphis.  We are here to meet with Dr. Wheless and have him evaluate Alli's neurological status.  Beginning today she will undergo an MRI, Video EEG Monitoring, Neuropsychology testing, and regular consultations with the doctor.  They have told us to plan to be here for at least a week.  So, here we are.  We stayed last night at the Fedex Family House across the street from the hospital.  Beautiful accommodations.  We checked in around 6:00 pm CST.  There were volunteers serving dinner.  So, after we unpacked, I ventured down with Alli to have a bite to eat.  I think there was almost a brawl between the ladies about who could hold Alli while I ate.  Then we returned to our room and snuggled in for the night.

We had an early start this morning.  Up at 4:30 to be at registration by 5:30 am.  Most of you know I am not a morning person, so that was a stretch.  But, all went smoothly.  We met several other families in the waiting room.  All here to see Dr. Wheless.

We are currently waiting for a cardiology consult before Alli has her MRI.  The anesthesiologists want to be sure they understand her cardiac status before administering anesthesia.  Once she has her MRI she will be hooked up for video EEG monitoring and we expect to meet with Dr. Wheless this afternoon.

I will keep everyone posted as events occur, results come in, treatment is discussed, etc.  At this point, I am actually most interested in the neuropsychology testing.  They will evaluate her to determine what her developmental age is.

Samantha started in the primary classroom this morning.  Aside from me sending Jason to the wrong car pool line (oops!) it was smooth sailing for her.  I can't wait to hear from her about it later!

Success!

Today was a whirlwind.  This entire week is actually insane.  Alli and I are scheduled to travel to Memphis this weekend and will check in to the Epilepsy Monitoring Unit and LeBonheur Children's Hospital on Monday morning.  So, there is a lot to do in preparation for our trip.

Today Alli had both physical and speech therapy, labs drawn, and her first g-tube change.  Knowing it was a crazy day of appointments, I had the crock pot going first thing this morning.  Alli is making good progress in both development areas.  She is developing greater trunk strength, tolerating long periods of time on her stomach, rolling to each side, occasionally rolling all the way over, mastering head control, and improving at her prop sitting.  We are going to have her fitted for a stander, which will hopefully help her with weight bearing on her little feet and get her ready for standing/walking.  She's tolerating small tastes in her mouth as well as oral stimulation.  She gets understandably nervous when things come toward her mouth, but once she realizes it is a friendly encounter, she tends to relax a little.  This will be an up hill battle for her.  She's had a number of traumatic things happen through her mouth, so her aversion is understandable.  We passed the g-tube change with flying colors.  The nurse said her stoma (site where the g tube is inserted in to the stomach) looks great and I did a good job taking out the old tube and replacing it with a new one.  I have to say, I was pretty proud of myself and she was a trooper.  It was much less traumatic then I imagined.  We just went in and took care of business.  Coming up over the rest of the week, Alli will have an appointment with Dr. Flamini to discuss her most recent EEG and labs, determine if we need to make any additional medication changes, and confirm whether or not it is still advisable to make the trip to Memphis.  She will also have her synagis shot on Wednesday, which protects her from RSV.

It was a weird feeling crossing the one year mark from when she started having spasms.  At this time last year, we thought we had dodged a bullet.  As we searched for the "why," we had convinced ourselves that the spasms were what brought us to her heart surgery and she would get through initial treatment and move on.  We never anticipated we would still be dealing with this a year later.  As I look at her now, it is hard to tell what her actual neurological status is.  There are definitely signs of development and improvement, but alas, we have the messy EEGs.  So, hopefully our appointment on Wednesday and our trip to Memphis will help to provide some clarity as to her neurological picture and what we can expect going forward.

Samantha graduates to the primary classroom this week.  She will now be in a room with 3-6 year olds.  We are excited to see what lies ahead for her in this new experience.  We have also had great success with the Tot Clock.  We had been making excuses for months about the acceptability of Samantha climbing in to our bed at night.  She would go down just fine in her big girl bed, but without fail, at some point during the night, we would find her at the foot of our bed, or wedged in between us.  A quick conversation with the pediatrician lead us to 1 of 2 choices - 1.  locking her in or 2. finding a tool that would give her a visual cue as to when it was "sleeping time" vs. "awake time."  We opted for the more gentle approach and invested in a Tot Clock.  Best decision ever.  We still have occasional middle of the night visits, but they are few and far between.  It has also been a lifesaver with naps.  She now understands that she has rest time, regardless of whether or not she chooses to sleep, until the yellow light comes on.  Can't say enough good things about it.  Samantha is growing more and more interested in her baby brother.  She talks to him in my belly.  In the mornings she will come over in hopes that he will move or kick and says "wake up little man!  it's your sister, Samantha."  Melts my heart.  She is so excited for him to arrive.  She also likes to confirm that everyone was born and she knows that she was born in the hospital.  She tells me this repeatedly throughout the day.  She has hit a bit of a whining phase, which I'm not going to lie, drives me nuts.  This weekend, as I was enjoying my Michael Buble Ave Maria and other Christmas music, I found myself losing my patience with the whining and scolding Samantha.  It takes a special person to realize the absolute ridiculousness of losing your patience with a three year old with the Ave Maria playing in the background.  All I can do is shake my head sometimes.

Well, that is the update on our end for now.  I will keep you posted throughout our adventure next week.  In the meantime, enjoy the blessings and joy that the Christmas and Advent season bring.  It is a wonderful time of year!