Oh the Meds

This is an SOS to any parent who has had a child that makes it terrible to give them meds, whether it be liquid tylenol that's supposed to taste semi decent or some serious stuff like blood pressure meds.  Olivia is just not having any of her meds now.  I had suggestions to grind down her pill form, dilute them in some of her favorite liquids and I thought that it worked after her first ounce was down.  That was until she refused to take the rest and Brian spent the rest of the night trying to re-dilute the meds into the remaining balance of Liv's fluid quota.  Worse still was she really refused to take down any fluid for a while.

The crushed up meds in food isn't working either as the projectile vomit yesterday indicated.  It's amazing, I've never seen such a small kid start gagging at the site of a syringe or food they suspect might have meds.  This is before she actually takes a bite of said food mind you.  It is becoming a huge chore and more importantly a real concern that she's not getting some of the proper doses of these meds and I'm sort of my wits end for new ideas. If you've got any, please leave a comment below!

She's a Smart Cookie

Meds and sleep continue to be a struggle for Miss Olivia.  Any masking agent for her crushed up pills is only working for a matter of days before she catches on and starts her dry heaves with every spoonful of applesauce, yogurt or pudding.  The compounded liquid meds are actually slightly easier to deal with because Brian's been mixing them with really strong liquid flavors like VitaRain or Propel and Olivia's just desperately thirsty and will chug it down even if it doesn't taste great.

My understanding was she didn't sleep much at all last night, thirst getting the best of her.  There's been continued effort to pump her full of salt with just about anything she's eating and that's making her thirst even worse.  Sadly, she's also waking up frequently looking for medical staff to take vitals, administer meds or draw blood.  I think Brian's going to back off all the salty foods today to see how her behavior changes if at all and that makes their day a little easier to deal.  Liv has become extremely attached to her blankets, wanting to be covered as if they will protect her from anyone poking and prodding her.  She took a few steps last night but is still generally refusing to stand on her own.

The incision is definitely angrier looking the other two from the Norwood and Glenn.  As I understand it, this is relatively normal as there was more scar tissue to cut through and her sternum was harder so there is going to be more inflammation and swelling this time.  Keeping up with the med schedule is getting better and I'm so excited to use this pill organizer I got from work.  It's a 7 day organizer with 4 boxes per day for multiple dosages and each day is portable if we were to be out and about.  Very neat, kind of sad that this makes me excited, but I'm trying to find little positives along the way.  Another positive, the shirts that the Grandmas and I spent time trying to rush through Pre-Fontan have really come in handy.  They're all Olivia's wearing right now. The ribbon closures were best for the hospital just as I expected with the chest tubes and additional lines and now she's sporting mostly the Velcro closures.  I'll try to get a picture soon to post but Miss Liv is really not feeling herself and basically refuses or cries anytime someone attempts to take her picture.  It's like she knows that she's not looking her best and doesn't want those to circulate.  Heart-breaking!

Where She Belongs

After much waiting around and anticipation of the echo results the nurse strolled into Olivia's room yesterday around 4 to give us the official boot from the hospital.  It was quick by any hospital discharge standards as we'd already gone over all the rules and regulations earlier in the day.  Olivia wasn't really sure what to make in the change in scenery.  Normally one to get excited about taking a ride out somewhere, she seemed very skeptical of the whole process.  Her initial reaction once back in her own environment was less than enthusiastic too; not even her playroom was of much interest.

Later in the evening my mom and I went to stock up on super salty non-healthy foods for the Livster's new high sodium diet and pick up all her new meds she seemed much happier watching Mickey Mouse hanging out on the couch.  A Daddy's girl through and through, she really only finds comfort right now from Brian.  Even as she's drifting off to sleep you can hear a faint "Dada" repeated over and over again.  The few times that she tried to sleep in her own room she would wake up and it would start off calm but if he didn't hustle up there it would eventually escalate to a "Dadaaaaaaaaaaaaa".  Only once she really gets desperate will she throw a "Mama" in there too.

Brian needs to take Olivia back in on Friday for a post-op follow up appointment to review the incision line, get follow up lab work to review liver, sodium and electrolytes, her second INR to review the Coumadin and a chest x-ray to make sure there's no fluid build up.

Rules and regulations so far as it pertains to post-op Fontan:

• No lifting under the arms for eight weeks, this includes if she may be falling; we need to resist the natural urge to reach out and grab an arm to steady her
• No direct sunlight on the incision for a year, regardless of the use of sunscreen - it's a no go
• No pool for one month post-op
• No soaking in water for two weeks or until chest tube sites have healed closed
• No ointment, lotions or any scar treatment on any of the sites for three months
• Exposure to the extreme heat is additionally dangerous for Olivia while she's on fluid restriction paired with the use of dieuretics (should be about 4-8 weeks)
• Avoiding large crowds, anyone with school age children or anyone who has recently been sick for the next 4 weeks
• Dieuretics and Enalapril cannot be given together as they could bottom out her BP; so administering meds has become a little more complex

Despite all of these new restrictions it is so amazing to have her back in her own digs and she gets a little better each day that passes.  

Today's Gameplan

I'm currently at the office trying to get caught up on everything that I missed last week, but my PC is trying to update my massive email box and it's bogging down everything I'm working on, so I'll blog while it restarts.  Today Olivia needs to have an echo, EKG, chest x-ray and blood work looking at INR levels to see how her body is reacting to the first three Coumadin doses, draw the level of Amiodarone in her blood treating the PVCs, look at the electrolytes since we know that Sodium and Potassium have continued to be low with all the dieuretics and review the liver and pancreas function.  If everything looks good on all of the above, she will get her central line pulled and discharged today.

It seems like we have the meds on a better schedule now with doses given at 7am, 8am, 1pm, 4pm, 7pm, 8pm and 2am.  If she gets to drop the sodium choloride and lower the frequency of lasix throughout the day at least two of those med times will go away - I'm especially looking forward to getting rid of the 2am dose.

Another big focus for Liv in the upcoming weeks or two will be getting her sitting upright more frequently, tolerating being held and walking again on her own.  Right now she's really refusing to walk or sit upright much because we think the central line is causing her pain in one of her legs with it's placement and when she sits upright it forces her to cough and that pulls on the incision causing her additional pain.  We want good productive coughs because that's what is best for her lungs, but she sees it from a different perspective - PAIN is baddddd.  I don't blame her, but those little lungs need to stay nice and clear.  Lastly, she wants no snuggles or to be held again because this is causing her pain on her chest.  It's sad to not be able to hold her and comfort her off to sleep but at the same time it turned out to be a blessing because it has not been an a fight to keep her in her crib after making floor rounds in her sporty red Radio Flyer wagon.

I'll keep you posted as the day progresses

The View from the 2nd Floor

It looks pretty darn good. Discharge talk is in the air, as early as tomorrow but it sounds like Wednesday is a sure thing if that sort of thing even exists. Olivia looks amazing. Thursday she had clinically made a lot of improvement but she was so dried out that she was sad to look at. The only negative to speak of at this moment is the amount of meds that need to be given.

Here's the current running list:

Amiodarone: arrythmia drug to prevent Liv's irritable heart from making more PVC's, should be short term and further testing revealed that her liver enzyme levels were just a delayed reaction to being on bypass as the level of Amiodarone in her blood was only trace amounts
Aspirin: now a whole 81mg post-op, should be a lifelong blood thinner
Calcitriol: calcium supplement to help replace what diereutics strip out, short term med
Enalapril: Blood pressure med that will likely be lifelong for Liv to make sure each constriction of her heart is as effective as possible
Furosemide: lasix to remove additional fluids off of her as she heals, short term med
Multi-vitamin: Just general good health practice
Potassium choloride: May be discontinued upon discharge, currently needed to replace what dieuretics are removing
Sodium choloride: yuckkkkk like drinking salt water to replace whats being lost by dieuretics, please hope this is done with discharge
Aldactone: another dieuretic to pull fluid from Liv's body this one is designed to keep potassium in her body since her levels are already low
Coumadin: serious blood thinner for a little kid, how long this will be needed is debatable at least for the next year (I'll talk more about this later)

Thats all that I know of for now but it may change upon discharge. For now Liv is eating up a storm, begging for water and starting to play a bit. So blessed

Trust in Mother's Intuition

Before Olivia I had often been told that a Mother's intuition when it came to one of her childrens welfare was one of the strongest reliable natural insticts out there. In both good and bad that instinct has not failed me to prepare for things with Olivia throughout her life thus far. It first hit me when I knew it when I had this overwhelming feeling that I was pregnant before any over the counter test could tell me. Then very early on when I knew something would be different in the pregnance from the norm, later confirmed by her HLHS diagnosis. Even the premonition that I would have a girl, so convinced I only had the name Olivia Giuliana picked out and didnt really consider any boys names.

Weeks ago the feeling came to me again after her Fontan surgery had been set that this surgery would not fare as well, to what extent I did not know and it worried me. I remember trying to hone in exactly and what I found troubling at the prospect of the next surgery and whether it was fear or my gut really telling me something? When the doctors brought her out of the OR telling us they had had to re-intubate and shock her into rhythm I was worried about the road ahead but not surprised. Each day as it has brought its small complications in bloodwork levels, pleural effusions, lethargy, arrythmias, eating, over drying from dieuretics; it hasnt come as any surprise because I had already mentally prepped myself for the Fontan recovery to be worse than her previous surgeries.

Tonight as she continues to get stronger she is begging me for "wa wa". With only 3oz left in her 24 hr max of 28 total fluid intake Im trying to budget her until 7 am when the daily intake retakes. Right now Im just thrilled she has the energy to repeatedly request it. Chest tube output was insignificant and they are talking about sending Liv to the floor today after rounds. Fingers crossed!

Eat, Eat, EAT!

As you may be able to tell by today's title, Liv is eating successfully. This morning's labs showed liver enzymes were normal, pancreatitis had subsided. Todays successful meals and snacks have consisted of: yogurt, hard boiled egg, shredded cheese, steamed rice, mac n cheese, apple juice, chocolate milk, froot loops, banana, pears. So you can say shes making up for lost time. Everything has stayed down and Olivia seems to be more satisfied. She is having a few PVCs but they are not making any med changes. Chest tube output really dropped again and thats all good news. We can now add chocolate pudding to the list of treats today too. That was a first and she really enjoyed it.