Happy New Year

Happy New Year!  I am so ready for a new year… It's going to be a great year.  Full of energy, life, memories, snuggles, wildness, homework, dance performances, baseball games, realistically- many, many doctor appointments, but prayerfully, all of us under one roof, safe and as healthy as we can be!

Not sure when my living room turned into a baseball field-  boys!

Even he was in on our New Year's Eve fun; whereas, she was not so much! 

An exciting end to 2013:  Carole Robinson, with our local newspaper, the Williamson Herald, wrote an incredible story about us and published it in the paper that was distributed after Christmas.  When I was contacted, I agreed, hoping it would bring awareness about congenital heart defects, in particular HLHS as well as show what an incredible community we live in.  After reading it, I know that God's hands were all over Carole's words.  It was beautifully written and brought tears to my eyes as I read it.  The kids were so excited to see themselves in the newspaper.  

Merry Christmas

Merry Christmas!  What a glorious celebration we've had.  There's been such excitement in the house mainly because they love that we are all home, with the focus on Christ-- not completely focused on Caleb's condition, being worried, doing work, or even cleaning up!  As I rocked the baby to sleep on the eve of his first Christmas, I thought about how Mary must've felt (the song "Mary Did You Know" was running through my head).  It was a special calming time Jesus was giving me and my frequent reminder that he has great plans for us.  

I meant to write a post over the holiday about the Christmas music.  This season, I was in the car a lot more than normal driving to and from the hospital.  I found such joy in the words of the songs.  Many days, I found myself singing quite loudly one second and bawling the next.  My favorite song was "Joseph's Lullaby"-  I would sing it to Caleb over and over.  Something about it gave me courage and peace.  

We do have daily scary moments.  I don't know that I will ever have a day go by that I don't find myself staring at his breathing/ looking at his coloring/ questioning if all is okay.  His coloring is blue and he is always "crunchy" sounding-   I guess its just the extra secretions that he has trouble clearing like a typical child does.  He gets choked up on them and at times seems as if he can't breathe and is suffocating-- very scary!  I just need someone else to say- it is or isn't okay.  I'm so thankful for best friends and neighbors that have done this for me when Zack wasn't home.   It's going to be a LONG winter season.  Thankfully, he hasn't had any seizures-  we have an appointment with neurosurgery tomorrow.  The glue is starting to come up on part of the incision.  He acts as if it is still very tender and has cried out a couple of times when something has touched it.   I'm trying to work on his tummy time tolerance.  He still doesn't last long.  I find it hard to find minutes to do this when he isn't eating (hooked up to the feeding pump), getting meds, had a fully belly, or just acts as if he doesn't feel good.  I'm working on getting past that excuse (it's an excuse because I don't like to see him act upset).  We have to build up his neck strength. 

We've played lots of board games (we have the King of Monopoly over here), jumped on new pogo sticks, been crafty with a rainbow loom, and now on to cleaning up from the chaos!

All the kids (Aunt Courtney and Uncle Robby are big kids, too) ready to run downstairs to see if Santa came!

Hospital admittance

Baby Caleb had to be admitted on Friday to the hospital.  He's had a cough for the last few weeks, but he actually stopped breathing briefly two nights in a row from secretions that he couldn't get up.  His cough is very weak and actually not "sick-like")-  more as if he's too tired to clear it.  He did another 24 hour EEG to monitor if he's having seizures and it looked good.  They are going to start tapering off phenobarbital and he'll be off it in two weeks and are adjusting another med's dosage times.  This should help with his lethargy-  which they suspect is causing the "cough".  He is getting discharged today.

Discharged!

Little buddy is home!  We got the best Christmas present with Caleb getting discharged.  Now our goal and prayer is to keep him healthy and home! 

Visit with Santa

Santa Claus came to visit Caleb!  He smiled and reached for his beard.  Santa gave him his first Christmas present- a doggie.  He loves to rub his ears.  

Our family was asked to speak at the Children's Miracle Network fundraiser for Vanderbilt.  What an honor as well as blessing for us to give back for what this incredible hospital has done for our family.  The kids were so proud to hold up their poster of pictures to represent baby Caleb who couldn't attend.

Caleb had a good day.  He's been stable the last few days, with no seizures.  He is currently on 4 anti epileptic medicines.  He is very alert, responding like normal, & sleeping much more appropriately-- except for his new habit of a 3 a.m. party every night!!

Tomorrow our friend, Nicole, is running her first full marathon in honor of Caleb.  Please pray for her!  She & Caleb share similar personality traits-  very determined   and strong!  I know she's going to be amazing tomorrow, but regardless, she is a hero to our family!

8 Months Old

     Happy 8 Month Birthday to Caleb!  Today was a "snow day" for the kids.  We didn't have any snow, but did have some ice.  We had a great day together, playing games, and then heading to the hospital for a Christmas Carnival.  The kids were thrilled upon arriving that the Titans players and cheerleaders were there!  It was an incredible experience for the kids to not just meet them, but get autographs, hang out with the kids like they are all buddies, and even play ping pong and basketball!
     After, we went to visit Caleb.  The kids made a birthday sign and couldn't wait to show him all the pictures they took of their Christmas decor at home.  He was sound asleep (medicines cause this) the entire time we were there (which was a while), in spite of their hard core attempt to wake him, too.  We were sad, but blew him plenty of kisses and left him watching a fun cartoon they picked out for him.
     The kids were then on the Children's Miracle Network Radiothon.  I was on it yesterday and they thought I was famous because they heard it from home on the radio!  So today was their turn… and they did fabulous.
     Once again, not our typical "snow day", (they really wanted to stay home in their jommies and just build forts and drink hot cocoa) but nonetheless, God has different plans for us right now and today turned out better than ever!

Aftershocks

Caleb had a slightly better day today than yesterday.  He's on the floor now.  Since surgery, he has made little response to me--- if he wakes, he stares as if he's lost and looks straight through me.  It's been very upsetting.  I've been told its likely just from the medicines he's on (he's on mega high doses of 4 anti seizure meds) but only time will tell.  He acts "stoned" all the time.  But prayerfully, with time, they can come off a couple of the meds and he'll "be Caleb" again.  I just miss his personality.   He also has been more agitated, which we suspect from feeling this way.  Today, there were two times that he made a little smirk, which brought tears to my eyes.  At times, I felt like he was purposely looking at me!  He continues to have quite a few seizures (we are calling them "aftershocks") that have each stopped within 2 minutes without intervention.  Please keep the prayers coming that his sweet personality returns and that the seizures stop.

I caught one smirk on camera!  They brought him toys today and he tried to play at times.

Sibling visit and Christmas Program

The kids were really missing their brother so we let them come visit him at the hospital.  They also got to see the lighting of the hospital Christmas tree (& were chosen to help flip the switch) and an excerpt from the Nutcracker Ballet!  Caleb has opened his eyes a couple of times, but not for long.  When they touched his hand, he looked up and smiled!!!!!   Such a special moment!!!   My heart melted.   He had a couple of seizures overnight and two today.  Much less, and they are not surprised since he still has blood in his brain (they couldn't extract it all and over time his body will have to absorb it) & he just had brain surgery, so the irritation and inflammation will cause continued seizures for a while. 

Yesterday, just after finding out that he was to have a craniotomy, they asked if I wanted his whole head shaved or just where they had to--- I said, the least they had to.  They saved me some hair from his "first haircut".

 

Out of surgery- Craniotomy

Caleb is out of surgery and recovering in the PCICU off the vent.  They had planned in doing a burrow hole, but told me just prior to taking him off that the neurosurgeon wanted to do a craniotomy.  This was quite a shock to me.  Maybe it was just that I wouldn't have time to process it that was emotionally affecting me, but I didn't take it well.  The blood that was removed was older than he expected and membranes had formed.  He wasn't confident that this would solve the seizures.  They put a JP drain in.  An EEG will monitor for any current seizure activity.  Please pray it has been resolved.

On a different note, our elves arrived prepped for brain surgery today with their EEGs!

Neurosurgery Tomorrow

Caleb's seizures have not been able to be controlled with meds.  He will have surgery tomorrow first case.  The neurosurgeon will burrow drill a hole in his skull to drain the blood and them will place a JP drain in.  Our Lord will hold Caleb's hand, guide the surgeon's tools, and carry Zack and I---  once again.

MRI Results

The MRI results determined Caleb has a subdural hematoma (accumulation of blood on his brain).  It is acute and putting pressure on the tissue.  His brain has not shifted yet (is still in midline).  They did a CT scan in the middle of the night (6 hours later) to check if it was still bleeding.   Thankfully it had not changed.  This explains why he has been having seizures.  They did another spinal tap today and his white cell count had increased.  This leads to the diagnosis that he had pneumococcal meningitis which likely started from his ear infections and crossed into the brain blood.  He isn't contagious, nor has he been.  Although bacterial, this is a different type of meningitis than we typically think of; however, still extremely dangerous & critical. With his history, his immune system is weaker and being an infant, the barrier is thin, which allowed this to happen.

They are concerned that a cerebral abscess formed and that is where the bleeding came from, potentially caused by being on Lovenox for his blood clot (anticoagulant).  Neurology is following him closely, working with meds to stop the seizures.  I met with the neurosurgeon today who said we've dodged the first bullet of surgery since he wasn't continuing to bleed (they immediately stopped Lovenox and gave him plasma (the blood's coagulant) to reverse the effects).  Now the seizures must get under control or he will have surgery to drain the blood in order to relieve the pressure.  Prayerfully, he will respond to the anti-seizure meds; and over time, his body will absorb the blood.  Meanwhile, he has to be on 14 days of IV antibiotics for the infection (we are on day 3).  He looked slightly better today/ a little more alert.

Needless to say, this is a lot to absorb for us.  We're optimistic, as we always are, that Caleb will pull through it and be that much tougher (he didn't even wince through today's spinal tap!). Please pray that the seizures stop, the blood absorbs, and that he continues to feel better.  (I'm trying to sign him up for tubes in fear of it happening again.)  :o)

Thanksgiving Blessings and Caleb Update

Well, this Thanksgiving has not been ideal or even close; and I could dwell in the reality that my husband, children and I are separated for another holiday, envious of those relaxing with family gatherings, on vacations, or even just being together; however, I'm trying to choose to ignore those selfish feelings and pour myself into the thankfulness to God for simply another Thanksgiving for each of my family members, a first Thanksgiving for my baby, and for all of those that are working on this day.  First, I am so blessed with 5 beautiful and amazing children.  My daughter dressed each of her brothers (in matching and "nice" clothes- which never is an easy task) and fixed their hair yesterday.  My son helped daddy make his favorite corn casserole, spilling jiffy corn muffin mix all across the kitchen.  My husband, who while on a "vacation" day from work, is in charge (solo) of 4 rug rats which talked him into making kool aid (we NEVER drink that)--  needless to say, they were quite silly all day.  Then under his supervision, they researched "cooper poops" on google!!!!    Oh my!  Thank goodness for filters.  

To say I'm thankful for the staff at the hospital doesn't touch how I feel.  God has blessed Caleb with not only amazing doctors and nurses that sacrifice their day to not just be at work, but to be a friend to me and truly love Caleb and care for him such that I feel comfort knowing he is in the BEST hands.   For them, my gratitude is indescribable.  God has put a special team together for my little buddy at this hospital!  

Lastly, I am so thankful for all of my friends.  What they have done for our family means so much to us.  From meals, watching kids, creating an event, to having my husband and kids over for Thanksgiving lunch, so many have opened their arms to us.  We have truly been blessed and loved through these months.  

An update on Caleb--  the initial results of the spinal tap showed he has meningitis. We are still waiting to determine whether viral or bacterial; however, it is likely viral- but they treat it with big time antibiotics.  He has been in extreme pain.  They say it is the worst headache, but then we throw in his Glenn anatomy and it makes the headache even worse.  We've just tried to keep him comfortable, which has been challenging.  They noticed him having focal seizures while we were in the ED.  He has had them over and over since.  They are hard to get him out of.  Neurology has increased preventative meds to extremely high dosages as well as he's needed quite a bit of meds to stop them.  It's been scary.  Again, his nurses have been right on top of him- watching for any activity and being wonderful advocates for his care.  (I just adore them!). He had an EEG this morning and is having a sedated MRI right now, and will go to the OR for a PICC line placement after.  Praying for answers, comfort, and that he gets better quickly, as well as for other special family members that are in the hospital that I can't be there for right now, but am in heart.  

Caleb's 1st Thanksgiving!

A sweet family served patients' families on Thanksgiving.  Such a nice gift that means a lot.  (They loaded my plate which made for nice leftovers).  :)

Post thanksgiving meal hug and relaxation- with a full belly, happy heart, and a special drink, or two, to make it all "okay" at Nicole's!

His third EEG he's had to monitor seizure activity.

Back in the Hospital, Seizing

Poor little buddy is back in the hospital.  He has been inconsolable day and night. We've been in the ED all day while they check him out and run tests.  The doctor didn't suspect that the ear infections would be the root of the obvious pain that he's presenting so they're having to rule out infections.  He had to have a spinal tap.  We are waiting on results and a plan, but know we're being admitted.  The cardiologist came in to look at him just prior to sending him to the floor and walked in as he started to have a seizure.    He's had two more since and the first dose of adavan hasn't stopped it. 

Double Ear Infection

Double ear infections and HLHS combined stinks.  The little guy has been so out of sorts the last few days.  He wanted to sleep all day on Sunday, which is odd' however, we didn't over worry because he typically has about 1 day a week that he "recovers" from just working to breathe, eat, sleep.  It was different though that night in that he started wincing every few minutes.  He's been working much harder than normal to breathe, taking shallow, fast breaths at times.  We've been at the pediatrician twice in the last two days and had an X-ray to rule out fluid retention.  We are hoping for a quick turn a round.  It's scary to see how such a "common/ typical" illness is affecting his little body.   Please pray he can stay out of the hospital!

Gratitude for an Incredible Day

The event on Sunday was incredible and Zack, the kids and I are truly humbled and thankful beyond words for everything you all have and continue to do for Caleb and our family.  I have previously begun this post and stopped three times since, not knowing how to put into words the gratitude that our family has for our friends, family, and community.  The planning that went into this was immense; however, was somehow accomplished without me knowing any details (and while many of you were watching my children many of those days!).  It was great to watch the guys relax and enjoy themselves while smoking their barbeque and even more fun to watch them as their competitive sides came out with their recipes!  During the event, joy came over me as I watched the children cautiously walk close, but not too near, to Caleb just to catch a peak as he stayed in his "4 foot bubble" :)

What love we felt from so many that came to support our family.   The food, auction, bake sale, outstanding live entertainment, comrodiry and just overall excitement of getting to see so many of you all at once was beyond words.

As we go into this week of Thanksgiving, I can tell you that despite all the surgeries and treatments, no family is as blessed and thankful as the Daniels and we want you all to know that each of you are in our daily thoughts and prayers thanking God for such a immense "extended" family!

Happy Thanksgiving from our family to yours.

7 Months Old

One super cute little boy turned 7 months old yesterday!  It was hard to get a picture of him because he kept kicking in his bouncer.  He was so happy, as have we all been… at home.  The last few days have been worrisome, however.  He's had a lot of congestion, thanks to our weather changing from hot one day to cool the next.  His lungs are just so sensitive that the slightest change throws him off, which affects everything- making his heart work harder.  Praising God that so far, Caleb has been able to fight through it.  He's one tough little guy.  I have been so nervous, getting little to no sleep, because he gets choked up and starts gagging, retching, and then holds his breath.  He has been much bluer than normal.  We do lots of nose and mouth sucking (he won't swallow anything, and I think the extra "flem" is making his gag reflex worse) and we are watching his sats very closely.  I have deep concern that the winter is going to be super long!!!   Praying we see improvement!

     He did "find" his feet.  He loves to hold them when I change his diaper.

Also, just a reminder that this Sunday is the "Day with the Daniels" event.  The website for more information is:

http://adaywiththedaniels.weebly.com

Halloween

Caleb's 1st Halloween and his first "holiday" to be at home for!  He wore a Doggy costume that each of the other kids wore on their first Halloweens.  It was quite snug on him, but we squeezed his legs in! (It's a 3 month outfit and he's almost in 12 month clothes!)  The kids got lots of candy- way more than this house needs.  Kate was a Miss Tennessee Zombie, Jake was a Football player Zombie (not sure what the popularity of the Zombie theme is from... but we saw a LOT of them!), Cooper was a mini Darth Vador, and Bo was Captain Underpants (but he wanted to only wear underwear (with no pants) so when we told him it was too cool for bare legs, he put his pants on top, and Daddy was--- well, you have to guess!!.  It was a slightly unusual Halloween this year, in that the weather was terribly stormy on the 31st and our neighborhood, along with most, postponed it one night.  We were so grateful.  The weather turned out perfect last night and it was great to be on a Friday night!

Appointments after Appointments

Caleb's had a great transition home.  He really likes his side now-- prefers to sleep on his side and is starting the process of leaning to his side from a back position (beginning of the roll process).  He's still not a fan of tummy time, but we try to encourage it with fun toys and siblings!  Yesterday was full with doctor appointments.  We started with surgery for a Mickey button check.  From there, went to hematology.  They had to draw blood to check his Lovenox levels, which is always torturous.  After attempts in all extremities, and nearing respiratory distress, they called in IV therapy team to draw from his scalp, which tends to be the easiest access.  I'm will ask for them from here out.  They are also trying to determine whether he has a clotting disorder or if the clot is simply due to the number and length of procedures and access he has had.  They tried to prepare me that he will likely require the shots twice daily for a while-- probably up to a year after his Fontan surgery!!!  It is just such a critical location.  Last, we went to Neurology-  we were very late by the time they finally finished his blood work.  (3 appointments back to back on a Friday afternoon was definitely shooting for the moon thinking we'd make them all on time!). I was so glad to finally get this clinic appointment in- it's been cancelled multiple times because of his hospital stays.  The doctor increased his medicine for weight gain and prescribed a med that we will have to keep with us at all times should he have a seizure.

All in all, it was a long day, but felt very productive!

Today, we are enjoying blessed family time, watching the boys' baseball games from the warmth of the car!!  So grateful we can cheer them on.

Discharged... Again

After an attemp at reducing his diuretics, X-ray yesterday (as well as dropping sats a couple of times) showed fluid in his chest cavity again.  So he's back to his high lasix and aldactone.  I'm just thankful he was impatient and being monitored so closely with the change.  It is so scary to be home when med changes are made because it is obviously much more challenging to see changes-- until they are bad and he's in distress!  

He's getting discharged today and is ready to be home with his family!  Prayers of thankfulness once again for his amazing doctors, nurses, nurse practitioners, & therapists.  They all love him so much and hold such a special place in my heart and daily prayers!  

Diuretic changes and Shots

Caleb's had a good couple of days in the hospital.  Quite a few medicines have been changed and adjusted, including a couple of diuretics-- which have made me nervous- including stopping spiralactone and cutting back lasix from 3 times a day to twice a day.  This is a huge change. (Necessary, though because they are hard on his kidneys.)  Although he's had past issues with attempts to reduce diuretics, he should tolerate it now and I am so glad that he is being closely monitored in the hospital with these big changes.  They are watching everything so closely with frequent X-rays and lots of the special attention that Caleb loves!!!  He had his shots today (he's still behind-- today was the typical 4 month old shots as well as his first of 2 flu shots).  We pray he tolerates them okay because shots sometimes rock these cardiac babies.  But again, so thankful that he's being watched carefully as well as we know it is so essential for him to stay healthy!  Just a reminder to get your flu shots (& not mist).    :)

Caleb discovered his voice the last couple of days-- I think he is making sure everyone knows he's here.  He loves all the nurses' attention (& most definitely gets it!). It's so funny to hear him having a little conversation and he's quite loud!

Gastric study

     Of course, here we are, in the hospital, and he has had a great day.  GI has been consulting with our cardiac team to try to figure out why he's been refluxing terribly since after the Glenn surgery, and retching for the last few weeks.  They stopped Erithromiacin last night in prep for today's Gastric Empty Study.  They gave him radioactive material in his formula through his g-tube and watched it every 10 minutes through a nuclear study.  He did amazing the entire hour and a half thanks to watching Elmo!  

He's been his super fun, silly personality today-- which is so great.

      Results just came back and said that his motility is normal-  wonderful news-- but now what?!?!?  Hopefully can figure him all out tomorrow.  :)

Back in the Hospital

We made it one week at home this time. Back in the hospital today.  He was wretching (dry heaving) over and over  basically to the point of not able to breathe.  Praying we get him comfortable  and able to tolerate feeds.

Cardiology Appointment

Caleb had a cardiology appointment today.  Nothing like an appointment while kids were on Fall Break! Walking in to the hospital, we ran into our friend who's precious little girl is inpatient currently.  New friends that God has put in our paths through this journey are such amazing support and "new family".  We all pray, cry, and cheer each other on.  We quickly hugged and shared quick updates as my crew was quickly getting antsy and we laughed hoping I would remember where they were putting my keys!
  They helped to echo the Xray receptionists calling out for patients, making sure everyone "heard" their names being called and even questioned them what their "progress" was, when they were ready for our turn.  Overall, they were surprisingly wonderful throughout the appointment.  Thankfully, Daddy met us there for a good bit of it!  He had a few questions to ask and it was definitely helpful for backup with the kids.  We questioned whether he needs the oxygen at night since he fights it all night.  He pulls the nasal cannula off, puts it in his mouth and just plays with it.  I'm not sleeping at all because I'm either repositioning it all night or just worried that it isn't on him.  She said to monitor his sats for about 30 minutes to an hour after he falls asleep and if he's above his okay range, then we will formulate a plan.  So, naturally, I just put him on his pulse ox and he's right at 75.  Ugh.  
His xray looked good.  We are stopping one diuretic- Hydrochlorothiazide.  They took bloodwork to check his electrolytes- praying he can stop some of his minerals because I think they attribute to his stomach discomfort.
His cardiologist just is so wonderful.  It has truthfully been and will continue to be extremely challenging at home.  But she just reassured me that he is thriving.  Although it will be touch and go for a while, our time away from inpatient stays will grow.  She was just so pleased with him smiling at her and seeing his adorably cute tongue making faces back at her and even reaching out.  She said that as parents we are doing everything right.  She said she can tell Caleb knows that the world is an amazing place full of love.  It was so pleasing to hear someone say these kind words.  All the medicine in the world couldn't make a Mom feel more "healing" for their child than to hear that someone else can see that their child is truly loved and happy.

Discharged, 6 month & 10 year Birthdays

Caleb turned 6 months old yesterday and we are home!!!!  We were discharged Wednesday night and got home around 8:00 pm-- just in time to quickly set meds and feeds up and get them started!  It was a hectic day that turned into a whirlwind night and nothing has been calm since!  He has come home having to be on oxygen at night as well as a lot more medicines.  He is currently eating 6 bolus feeds a day now and has been wretching a lot.  It has been getting worse and worse. I spoke with his GI doctor today and she said it is a motility issue and she wants to adjust his amount and calories over a few days and will hopefully be able to help him.  Last night, he couldn't breathe he was dry heaving so much.  It got scary!  

Yesterday was a big day for Kate!  It was her "golden" birthday-- she turned 10 on the 10th!  I just can't believe my oldest was born 10 years ago.  She really is the most wonderful blessing to our family.  She's so smart, kind hearted, easy going, and calm child.  I know the next 10 years she will accomplish amazing things, but I only wish I could keep her young!  :)

And yes, he does have on a plain onesie and one sock for his 6 month picture!!-It's that wild around here!

Brothers had to "test" out her new present (lip gloss that they turned into face, leg, arm, and carpet paint)!  Ugh!!