Home 2-7-2012 Miss K is 6 Months Old!

Miss K had her 6 month Cardiology check up today.  It went well so say the least...I'll leave out the whole complaint of it taking us over 4 hours to get through the visit and back home again, let's just say:  I thought taking her to the nearest center her cardiologist is in would take 1/2 the time as taking her to the usual place we go to, I was wrong it took the same amount of time, the only difference was we didn't spend 3 hours of our total time driving, but instead we spent that time waiting and waiting, not quite sure what's worse?

Anyway, on to today's results and decisions!

Miss K is doing great heart wise.  Her little heart was beating at 128 BPM today at her appointment, which is great :o).  My only personal concern was her weight, she weighed 8 ounces less today than she did 2 weeks ago, I'm hoping that's not true and that their scales are just weighing differently than the pediatricians, we'll see tomorrow at her 6 month well baby check :o).

We decided to keep her on the Amiodarone a little longer.  As her Mommy I just don't feel like she's ready to be off of it, her cardiologist agreed though he was more than willing to take her off of it today if I wanted him to.  So essentially it was my decision to keep her on it.  Those 2 SVT episodes last month really scared me into it.  But the good news is that we decided to keep her on the same dose instead of adjusting it, YAY!  We're thinking maybe she can be weaned slowly off the Amiodarone for good if we keep the dose the same and let her outgrow it, as long as she doesn't have a lot more SVT episodes that is.  I mentioned 2 weeks ago that her cardiologist upped her dose of Propanolol over the phone due to her recent SVT episodes, so the plan is to try just adjusting the Propanolol in the future IF she does have more episodes.  If Miss K quits having SVT episodes by her 1st birthday then we'll stop the Amiodarone and see if she can do without it.  As of today Miss K is taking 6 ML's Amiodarone once daily and 2 ML's Propanolol every 8 hours.

Because we're keeping Miss K on the Amiodarone we are being referred to an Ophthalmologist  to check her eyes and make sure the Amiodarone isn't harming them (see Side Effects).

All my concerns were considered.  Most were explained and talked about, some I was told to ask the Pediatrician as they didn't seem to be heart related.

Miss K CAN take Tylenol, thank heavens!  Now I can feel good about making her ear pain go away orally!  The numbing ear drops do work but I feel Tylenol would work better.

Her sweating while eating did not concern the cardiologist, he felt sure it was caused by her congestion and that her heart is just fine.  I mentioned that when she sweats profusely (from being too warm) she get's really stinky, sweaty stinky, and I asked if anyone else has mentioned that issue who was taking Propanolol and/or Amiodarone, the answer was "no, not that they knew of" so I guess Miss K could just be a stinky sweater (I sure hope not though!).

I asked about her joints popping, and if this could be due to medications, the answer was "no", we need to bring it up with the pediatrician tomorrow.  Hopefully this is nothing to be concerned about but we'll see!

I asked about antibiotic interactions with her heart medications.  The answer was "anything the pediatricians usually use is safe, there are 3 or 4 that could be issued but they're not in the top choices for pediatricians to use", luckily Miss K's pediatrician is VERY observant and careful and I don't need to remember the names of those "3 or 4" antibiotics, lol!  But I feel better knowing that giving her antibiotics for her ears isn't going to interfere with her medications.

I asked about her Thrush issues.  This is something we've been battling with her for about 4 months now, it comes and goes.  We've tried treating it with Nystatin but it didn't work, I tried Probiotics and they did not work either, last resort was Gentian Violet and it did work but as soon as it wore off on the 3rd day of application the Thrush came back :o( so Miss K has been treated with it 3 times now and is ready for it again.  As for the heart medications being the culprit, the answer was "not likely", Miss K is just one of those babies who gets it and keeps it :o(.  She should outgrow it in time.  I asked because her Pediatrician mentioned one of her heart medications could be the reason the Thrush wouldn't go away, not that it is the cause, just that it could be helping keep it around.

I asked about our method of giving Miss K her Propanolol.  She LOVES to spit this one out and refuses to swallow it.  One day out of desperation I found that if I gave her a "chaser" dose of Gripe Water (please note, this link says Gripe water may contain Alcohol, the brands of Gripe Water I use DO NOT contain Alcohol, if you find one that does I would NOT suggest using it for your infant) she would swallow the Propanolol without complaint, she LOVES the taste of Gripe Water for some reason.  I was only concerned that there may be an ingredient that could interact with her heart medications.  The cardiologist couldn't find any reason I shouldn't do it so we will definitely keep it up!

My last, and biggest, concern was her Potassium levels.  In the beginning when she was hospitalized she had a large muscle twitch in her right side that the Neurologist attributed to possible seizure activity though they really didn't think it was seizures she was having.  They put her on Keppra just in case and asked that we have an MRI done a few months later.  When I was looking back in my journal about those few weeks I noticed that these "twitches" were happening at the same time they found her Potassium levels were too high, so I looked it up on the WWW ;o) and read up about signs and symptoms of Potassium levels being off and found that there was a slight possibility that Miss K's "twitching" could have been caused by the high levels of Potassium in her system.  Last week Miss K started this funny little head thing, something that in a normal, perfectly healthy baby, wouldn't draw anyone's attention.  It's VERY likely it's just a new little quirk about Miss K, the first time I noticed it she had a headband on, she hates headbands so I think that maybe she was just trying to rub it off.  I'm still a little concerned and will be asking her pediatrician about it tomorrow but the Cardiologist didn't think it was anything to worry about.  When I mentioned the Potassium levels he was more than willing to order a Potassium check along with her other usual blood work. 

Amazingly the Cardiologist called me about 2 hours after I got home to tell me that her blood work all came back and it's all PERFECT, I did a little dance :o), I'm always stressed about what her blood work looks like, I panic when he calls thinking "this is the day that he tells me the Amiodarone is killing her", so when he tells me it all looks great I can't help but dance and sing :o).

Sweating While Feeding Update

New Years Eve our son tested positive for Strep Throat so I've been keeping a close eye on Miss K for any signs she might have it, but I hadn't seen any signs that she was ill, except the sweating while eating not eating or sleeping well and a bit of congestion.  Today I finally called the Pediatrician's office after Miss K added an unusual high pitched squeal while I was feeding her, particularly while feeding her on my right side.  The squealing thing is what my son did when he had an ear infection, it was the same squeal so I got suspicious.  I took Miss K in feeling a bit foolish considering she was acting as happy go-lucky as can be, as long as she wasn't eating or being put down for bed.  I'm not a paranoid mother...usually.  I rarely took my son in unless he was showing sure signs of being ill or if I was absolutely sure myself that he just had to be ill no matter what his signs and symptoms were, turns out so far I am always right to take him in, or not to.  I didn't want today to end up being different and be sent home with a pat on the back and "she's fine, you're just being overly cautious because of her heart condition".  So the Pediatrician listened to my concerns then he listened to Miss K and did a complete work up on her.  He even told me I was fine to bring her in to him, even if I felt foolish doing it, because of her heart condition.  I love how understanding he is, he's such a wonderful Pediatrician!  I was relieved to hear that her heart and lungs sound perfect and her liver felt great, so no concern about the sweating while feeding.  I wasn't so happy to hear him say "did you say she squeals when feeding on your right?"  I said "Uh-oh...yes" to which he replied "well, Mom is always right.  If my ear looked like hers does I'd be passed out from the pain".  Darn it.  He then looked at her throat and announced that it is red and looks sore.  And since her big brother had Strep Throat her Pediatrician is going to treat Miss K like she has it as well, she has enough symptoms to convince him without a Strep Test.  So on the day Big Brother finished his last dose of Amoxicillin Miss K started her first dose, she also received a prescription for numbing drops to put in her ear to help dull the pain.  And by early this evening, after our little jaunt out to the Pediatrician for Miss K and a trip to the Pharmacy to get her Antibiotic, I started coming down with symptoms of Strep Throat myself.  I guess tomorrow morning I will be calling the Pediatrician again to see if he can prescribe antibiotics for my husband and I without a Strep Test since he knows both our children have it.  Hopefully after all 4 of us have been treated we won't have another bout of it in any one of us.  I'll be disinfecting my home as well, which is going to be real fun (insert sarcasm).  I'll have to wash EVERY toy my son and Miss K have in order to make sure I get the germs all out of here.  Wish me luck, it's going to take days.

Home 1-3-12 Miss K is Almost 5 Months Old

Just shy of turning 5 months old Miss K is doing quite well!  Still no SVT episodes, YAY!  We're still giving her 1.5 ML Propanolol every 8 hours and 6 ML Amiodarone once daily.

New issues?  I'm not quite sure.  Yesterday I noticed her sweating while eating, something she has done before once or twice since birth, both those times I'm almost sure she has been congested.  She got pretty bad Fall Allergies this past fall season, something she gets from her Mommy no doubt, Fall Allergies get me every year without fail, it was during this period that I first noticed her sweating while eating.  This last time I noticed it she has been congested due to a small Winter Cold, she's not sick per say just "stuffy" with a runny eye.  Definitely no fever or cough and not acting miserable other than difficulty breathing as well as she'd like to.  So, I'm not sure what to do.  I've debated contacting her Cardiologist about it, maybe even her Pediatrician just to ask him if congestion could be the culprit.  My "mommy instincts" tell me she's fine but I'm still paranoid.  I know if it were my perfectly healthy son doing this I would just shrug it off and watch him for a few days/weeks to see if it happened again.  I'll keep you updated on my decision.

Newest "trick":  Miss K has learned how to forcibly spit out her medications.  Yes, that's right FORCIBLY, the past few doses I've ended up "wearing" more of her medication on my face than she has ingested.  I'm not quite sure what to do.  We've tried quite a lot of things to make medication dosing easier and less stressful for both of us but what can I do when she's spitting it back into my face?  We'll be trying yet another method that a cousin of mine suggested:  Try this secret for giving medicine to veteran spitters (be sure you have the medicine within reach and ready to go before you start this procedure): Cradle baby's head in the crook of your arm. With the same hand, encircle baby's cheek and use your middle or index finger to pull out the corner of his mouth, making a pocket in his cheek. With the other hand drop the medicine into this cheek pocket a little at a time. This hold keeps baby's mouth open and his head still. Best of all, the traction on baby's cheek with your finger keeps him from spitting the medicine back out. Maintain the traction until all the medicine has gone down.  Not sure it will work but it's definitely worth a try!


Our next Cardiologist appointment is February 7, 2012.  We're hoping to take Miss K off the Amiodarone completely and have huge success without it.  So I'll update at that time (or if I get any answers about the sweating while feeding before then).