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!