The Journey of a Sweet Little Boy and His Special Heart

Thursday, May 26, 2011

On the mend

Yes, we are home.  I haven't gotten a single second to myself to update the blog, but we are home and Logan is doing SO much better. 
So what is the scoop?  A big fat ? Still not sure what was going on with our little guy this weekend.  It kind of felt like a guessing game all weekend.  The doctors were all grasping at straws to give us answers, but bottom line might be there are no answers.  It is the general consensus that it was probably just a virus that caused him to spike his fevers, which then caused him to not want to eat or drink, which then made him dehydrated which caused an elevated HR and decreased blood volume leading to lower saturation levels.  It is a vicious cycle, and it can get out of control fast.  Lesson learned... I will do whatever it takes to keep him hydrated so we can avoid another 3 day hospital stay in the future.  His blood work did show he was fighting off an infection, but they were never able to pinpoint what that was so they gave him mega doses of antibiotics that pretty much wipe out anything, and once they were able to rehydrate him his HR stabilized.  They discharged us and we went right to his pediatrician who found double ear infections.  Yes, 4 different doctors looked in his ears at the hospital, but ear infections have a way of sneaking up fast.  Ears can be clear one day and have infections the next day.  His ped thinks they are just the tail end of whatever he was fighting.
So we are glad to be home.  He has been fever free since we left the hospital.  The hardest thing for me is I feel like we have taken 10 steps backwards.  All the progress we made over the last 6 weeks feels like it has been flushed down the toilet.  I was so excited for his 1 year well visit with his ped. to show him he was off oxygen, sleeping through the night, and done nursing.  Now none of those things are happening.  He is back on oxygen full time, sleeping horribly, and only nursing.  We'll figure it all out again though.  He is happy to be home, and we are so thankful he is okay.  His cardiologist called to check on him and again reassured me that his heart looks fine so that is good news.
So onward and upward we go.  We will take it as it comes.  This was our first ER experience and I'm sure not our last.  I will be more prepared next time ( the thought never even crossed my mind that we would be staying, I just wanted them to tell me his heart was okay then send us home).  But alas CHD is a bugger.  Even a simple virus can just wipe these kiddos out.  So back to life on chords and tanks and sleepless nights, but it will get better, and I love him even more. 
I'll leave you with this quote and a few pics of the cute little guy.  "...Heaven's kindness will never depart from you, regardless of what happens... bad days come to an end, faith always triumphs, and heavenly promises are always kept."  Jeffery R. Holland

It's just not fair... still in his birthday get up. 
 This was Monday morning after a very long night for both of us!

 We were on contact precaution the entire time since they didn't know what he had, so we were never allowed to leave the room.  It got pretty boring.

 A cup and tongue depressor was the favorite toy.

Tuesday, May 24, 2011

A visit to the Hospital

I planned on the next big post being about all the fun and parties for Logan's 1st Birthday, not a hospital stay.  Needless to say his birthday weekend didn't really go as planned!  Isn't that how life goes though?  No matter how much you plan or do it is ultimately out of your control.
He had a few good hours of his birthday.  We did get to run the IHH (Intermountain Healing Hearts) 5k Saturday morning.  We had awesome t-shirts letting the world know how proud we were that it was our Heart Hero's Birthday (I will post pictures when I am at home and can get to them).  Logan was great all Saturday morning.  We came home from the run, he had some lunch and I put him down for a nap.  We had his little heart buddy Severin's family over for a BBQ after the race and we woke Logan up so we could do presents and cake and ice cream.  He wasn't really interested in either and the more I held him the hotter he got.  About an hour after he woke up his temp had climbed to 102.5.  I freaked out.  He has never had a temperature in his whole life.  So I ran him to the pediatrician.  I figured if it was ear infections or something I wasn't going to make him wait it out.  Other than a high fever everything else was okay.  He didn't have a runny nose, ears are clear etc.  So they ruled it a virus said give him Tylenol and ibuprofen and keep his temp down.
We were up every hour Saturday night.  The poor little guys was just miserable.  His fever finally broke around 4 am and we thought we were over the worst part.  Sunday morning he ate breakfast, played with toys and seemed just fine with no temp.  So we figured maybe he got too much sun Saturday and didn't drink enough.  Then Sunday afternoon his temp came back, but very low grade (99.5).  We were having 38 people over for his birthday party.  Hindsight we probably should have cancelled, but when he woke up just fine that morning it didn't even cross my mind.  And then by the time his fever came back it was 2 hours before everyone would be there, and I had SO much food.  So we had his party.  He gave us a few smiles and perked up when he got new toys, but I held him most of the time.  After everyone left he went down for a nap.  He woke up around 9 pm and when I picked him up he was on fire.  We gave him Tylenol and it wasn't helping.  We hooked him up to the pulse ox (we had him on it most of the day) and his saturations were still good but his HR was 215 bpm (his normal HR is 110-130).  Because of his little heart that made both Brad and I so nervous.  We had called the cardiologist on call earlier in the day when his HR was 190 and he said if it got higher we should bring him to the ER to be checked.  So there we were- it was 9:00 at night we were both in our PJ's.  Ashlyn and Tanner were both asleep.  We changed and ran out the door leaving a baby monitor with my neighbors until my dad could be at our house to stay with Ashlyn and Tanner. 
On the drive to the hospital Logan just got worse.  All day he had been able to hold his saturations and that was reassuring to us.  But on the drive he started de-satting.  When we left our house his sats were at 88% when we pulled up to the ER he was at 65%. 
One nice think about being a cardiac kid is you get a golden ticket in the ER.  I was crying when I brought him in and all I had to say was he was a cardiac kid and was de-satting with a HR in the 200's and I barely had time to sign my name before they had him in a room putting oxygen on him and hooking him up to all the monitors.  He was considered "status red" and we had several doctors in there within minutes.  They gave him a mega dose of antibiotics, did an EKG, x-rays, drew labs etc.  And all was a mystery.  The biggest concern was there was no obvious trigger point for his fever.  Nobody at home has been sick.  He hasn't had a runny nose, no ear infections.  His blood work came back showing his body was definitely fighting something with extremely elevated white blood cells, and it also showed he was dehydrated. 
They admitted us to stay the night.  It was a LONG night.  He was miserable.  He cried anytime a nurse or doctor even looked at him.  I think he remembers his last hospital stay.  When he saw the crib he FREAKED out.  He wouldn't let me put him in that crib for anything.  I finally asked around 3 am if we could have an adult bed instead and I would just lay down with him.  This worked a little better. 
So here we are.  They are ruling a lot of things out, but still don't know what is causing our little guys so much trouble.  There was a debate as to which team of docs would take care of him.  Cardiology or medical.  After the x-ray and EKG it was determined that this wasn't heart related (sigh of relief) so the medical team took over.
We begged the doc to let us come home yesterday, but he wasn't comfortable with that.  Logan still needed IV's to keep him hydrated and had developed lovely diarrhea.  Logan is on his typical hospital hunger strike- the only way he knows how to rebel against being here.  So with that and not eating it isn't a good combo for staying hydrated.  We were so glad the doc didn't let us go home though.  I had run home to have a shower and grab a few things (we didn't pack anything to stay and Logan pooped all over me).  When I got back his fever spiked again.  So we stayed the night again keeping him on fluid and oxygen.  He has required at times up to 3 liters of oxygen to keep his sats above 75% and the doc didn't want to send him home on that much oxygen either.
So here we are Tuesday morning.  He had a GREAT night.  We actually slept.  When we were asking to go home (mostly because we knew Logan would sleep better at home) the doc said he would tell the nurses not to do vitals during the night so they weren't always waking him up.  That made a big difference.  He stayed fever free all night.  More tests came back negative.  They gave him another mega dose of antibiotics last night.  They have been able to turn his oxygen down to 1/4 liter.  We tried room air and .12 but he can't quite hold his own on that yet.  This is better than 2 liters though.  So I think they will let us come home today.  His throat is red now, so it is determined that he probably has some virus that would effect most of us as just a sore throat.  Seems kind of silly that a sore throat can land you in the hospital, but with Logan's little heart he just doesn't have the reserves that a heart healthy person does to fight these blasted viruses.  I keep asking if he is going to land himself a hospital stay every time he gets sick and the answer was probably not every time, but probably more than the average kid. 
Here is to hoping we will be home soon!

Tuesday, May 17, 2011


Dr. Mr. Logan-
I just wanted to tell you how much I enjoyed my afternoon with you today.  Usually you are taking your nap when your brother and sister are at school so I use that time to get things done around the house.  But today you decided you would rather hang out with me.  I was okay ignoring the laundry.  We had a great time playing.  We practiced saying "mama" and giving kisses.  I lifted you up high to touch the tree painted on Tanner's wall that intrigues you so much, and while we were on the bed we were naughty and jumped on the bed just like monkey's do (you laughed and laughed).  I let you make a mess in Tanner's room, and we drove his cars all around.  I tried to show you how to crawl by crawling everywhere myself, but you still were not interested.  You would look at me and laugh and then get mad you were on your tummy.  I of coarse would give in and pick you up.  We shared a cookie (but not until after we ate our vegetables).  We read a few books, and snuggled a whole bunch.  It was a perfect afternoon.
It is your Birthday on Saturday.  I can't believe you will be ONE.  For some reason I have been really emotional getting ready for this big day.  It has been an unbelievable year.  As part of your birthday celebration your dad and I have been putting together a video of your first year of life.  Seeing all the pictures I have re-lived so many precious, precious moments of your life.  You are a MIRACLE, and my HERO.  Thank you for choosing me as your mommy.  Let's have another afternoon date again sometime soon!
I love you little guy.

Monday, May 9, 2011

Our First Taste of Spring

It is raining and cold today, but we did get our first taste of Spring last week (we really wish it would stay).
Logan thought he literally needed to "taste" Spring-  I think he decided the dirt didn't taste like chocolate!
When people ask me how Logan is doing now I don't hesitate to say "Great."  Before I always wanted to say say fine, but....... there was always a but.  Now I feel like we are in a really good spot.  He is "pink," he is chord free during the day, and he is happy and growing like a weed.  We are thrilled and plan on enjoying this time to its fullest!
Happy Spring!

Sunday, May 8, 2011

A Heart Mom Weekend

I have been trying all week to sit down and write about my weekend, but of coarse life never ceases to slow down.  I am finally getting around to it as another weekend passes.
I always talk about the AMAZING heart mom community I have found, and the great support I get from other moms.  This weekend I was able to meet so many of these moms.  It was my Heart Mom Weekend!
Friday night I went to dinner with two heart moms, Liz and Heidi.  It was the first time I had met them in person, but it felt like getting together with old friends.  Liz heard about Logan when we were in Philadelphia and reached out to us sending him one of her darling Jakey Blankies.  I have been in touch with her ever since (she is from Arizona).  And I met Heidi through Liz (she is also from Arizona, but currently living in Utah).  Both of these amazing women have Angel babies that earned their wings way too early.  I was humbled sitting at the table and hearing their stories.  I have to tell you a cute story.  I was reading Heidi's blog about her Angel Jersey a few nights before, and Logan was on the floor destroying the office minding his own business when I pulled up a picture of Jersey he stopped pulling the books off the bookshelf and started waving his hands at the computer.  He scooted right over to me and had me pick him up- keeping his eyes locked on the computer the whole time waving and talking to the picture of Jersey.  I sat and cried as I watched him.  It was like he knew exactly who she was.  I don't doubt for a minute that Logan has had Angels at his side so many times in his life.  Maybe these little heart Angels take extra care of our Heart Warriors that are still able to fight. 
Heidi and Liz are incredible women who have had to endure so much.  They have endured it all with grace. I left Friday night feeling extremely humbled and blessed.  This world of CHD is heartbreaking... literally.  I came home and held my Logan extra tight (he was the only kid still awake) and I took an extra moment to watch Ashlyn and Tanner sound asleep in their beds that night.  I will embrace Ashlyn's intensity in life and Tanner's "never in a hurry"approach to life, and never take the health of my children for granted.  
Saturday was the Heart Mom Luncheon for a group we are part of called Intermountain Healing Hearts (IHH).  It was a luncheon honoring all the mom's of CHD warriors.  We were able to bring someone with us who has been a support to us through everything.  I was so grateful to be able to take my mom with me.  It was overwhelming being in a room with so many women who you can relate to on SO many levels.  I was so emotional hearing about all the CHD warriors.  I did cry a lot (who is surprised), but they weren't all sad tears.  I walked way from the lunch with HOPE.  I talked to a mom with an 18 year old with HRHS and he was just given the thumbs up to start his mission papers.  HOPE.  I talked to a mom who's son in 18 months with HRHS and is so active and healthy she can't keep up with him.  HOPE.  I also talked with moms that have Angels in Heaven and my heart broke over and over.  It was so great meeting all the different mom's of heart babies I have followed from their blogs.  We are all fighting the same fight regardless of the exact diagnosis and it was great to feel everyone's heart.  My mom couldn't hear a lot of what was said (she is hard of hearing and the mic wasn't especially loud) but she said to me as we left, "I couldn't hear everything, but I could feel the tenderness of their Spirits."  Every mom wants what is best for her child and will do anything for them. 
You have those "why me" moments sometimes and "why my baby."  I had a perfect pregnancy with no complications- I am healthy.  So why me and not the girl that drank her whole pregnancy.  But then you stop and think I am SO glad these babies came to families who care and who will do what it takes to give them the care and love they need.  Ashlyn said to me the other day, "Mom, we must have a really special family for Heavenly Father to have sent us Logan with his special heart."  I said yes, we are a special family and Heavenly Father knew we would take good care of Logan and his heart, but he also knew we would take extra special care of you and Tanner too.  They are just as special and I am so grateful they are healthy- I realize what a blessing that is.
To all these amazing women who know exactly how it all feels.... from handing your baby over for surgery, to living in the hospital, to sleepless nights, chords and medications, to smiling and not hitting that person in the face when they say, "oh so your baby is fine now right?" to the endless worry and doctors appointments, to the celebration of every pound gained. Thank you for making me feel like a normal person again and like I do fit in somewhere!