Miss K Update

After Miss K's last breakthrough episode of SVT I called her Cardiologist.  After a little deliberation he decided to up Miss K's dose of Propanalol from 1.5 MLs every 8 hours to 2.0 MLs every 8 hours.  As of right now we are keeping the Amiodarone at 6 MLs once daily.  So far so good!  She has had a few screaming fits equal to the last one that put her in SVT and has remained SVT free through them.  I. Am. Relieved.  We still go in to see the Cardiologist on February 7th.  This is when I will finally get to ask some important questions I've been dwelling on for the past 2 months.  My first question is, now that she's almost 6 months old, what pain relievers can she have while on her heart medications?  I haven't asked her Pediatrician this one though I know I probably could but we haven't had a need for it until this recent ear infection that has really kicked Miss K's butt :o(.  When her Pediatrician diagnosed her with the ear infection he didn't tell me to give her Tylenol or anything, which I do remember him suggesting when our son had one at this same age, instead he prescribed numbing ear drops.  To me this says she probably shouldn't have pain relieving medications?  We'll find out, just in time for teething to begin lol!  Next question, I've heard there is a higher likelyhood of younger siblings of SVT babies also being born with SVT, true or false?  Hopefully FALSE!  We would really love to have another baby, maybe two, but this hearsay really scares me, enough not to have any more kids? most likely not, but enough to make us very cautious with another pregnancy and enough to make us look for signs and insist on constant monitoring until we know for sure we're in the clear.  I know there are more questions, this is why I'm putting them here, so I don't forget, and already I have forgotten one or two more, hopefully I'll remember by next week!

New issues with Miss K:

Since we arrived home from PCMC Miss K has insisted on being swaddled, very tightly, for sleeping.  She will not sleep longer than mere minutes if her arms are allowed to flail and wave around.  We went through the same issue with our son and thought we'd try preventing it with Miss K but it didn't happen.  I can't remember how old our son was when he finally weaned himself from the need to be swaddled, I'm thinking he was about 7 or 8 months old.  All I remember was the struggle of having to make him cry it out at night when he'd break free of the swaddle and wake up.  Miss K has started breaking free of her swaddle, and she does it multiple times throughout the night.  The problem is we cannot let her cry it out, we can't have her getting worked up and risk an SVT episode.  We were instructed from the beginning to keep her calm and happy.  Now we're up all night re-swaddling the little stinker, usually every 30 minutes to an hour.  Most nights we give up and bring her to our bed so that we can try to get at least a little sleep.  Last night I spent the night waking to every move she made, I had to hold her arms down every time she moved so she wouldn't wake herself.  I have no idea what to do.  We need sleep, she needs sleep.  She needs to be trained to sleep without the swaddle but I have no idea how without letting her cry it out.

I've said it before, Miss K hates taking her medications.  A lot of the time she throws them up.  Most of the time she spits them out forcefully.  And all the time she holds them in her mouth at the back of her throat, she can even swallow saliva past the medication without letting any of it go down!  She's very talented.  No amount of flavoring is working.  No amount of force is working.  It takes 5-10 minutes to even get a small dose in her.  I asked the Pharmacist if we could switch the Amiodarone to pill form.  The answer was "No", she's not taking a large enough dose.  Amiodarone tablets come in 200mg only, and Miss K's dose is smaller than 1/8 of a pill, there's no way we could accurately dose her with a pill :o(.  Though this does bring good news to my ears, knowing she's on a small dose compared to other babies I've read about who are able to take a pill makes me fell really good.  A crushed pill in baby food would make life SO much easier for both of us.  But of course I'm more than willing do deal with the compound if it means not upping her dose, I really hate the Amiodarone that much.  All the more reason to hope we can take her off of it soon!


Another SVT Episode

This month has been a roller coaster with Miss K!  It wasn't fun starting the new year with an ear infection in the first place but it's gotten progressively worse.

We went in to see the Pediatrician last week for a follow up on Miss K's ear infection.  Good news, her ear was no longer infected, bad news it had a lot of fluid left in it.  She's scheduled to go in for her 6 month well baby check up in 2 weeks so her Pediatrician planned to see her again then to check the progress of her ear.  Since it was the beginning of the weekend when we saw the Pediatrician he wanted to make sure we were prepared for anything without the need of a doctor so he prescribed another round of Amoxicillin for Miss K and instructed me to fill it for her if she got worse over the weekend (i.e. pulling or tugging at her ear, congestion, cough or fever).  Miss K did great over the weekend though so we thought we were in the clear.

Yesterday Miss K started getting really fussy and hard to keep happy, I attributed it to her teeth moving.  Last night wasn't much fun for any of us.  Miss K tossed and turned and cried out constantly throughout the night, ending up sleeping in our bed with us so we could console her more easily without needing to leave our own bed to do so.

This afternoon Miss K started tugging at her ear, the same one that was previously infected and full of fluid.  So I contacted the Pediatrician and he instructed me to fill the prescription for Amoxicillin.

We made matters worse for Miss K by taking a little shopping trip this evening, the change in altitude got to her ear ache.  And we also messed with her nap and feeding schedule for the evening.

By the time bedtime rolled around poor Miss K's ear was bothering her so much she was hard to console, she was also overly tired and hungry.  Because of her medication schedule I could not feed her or allow her to sleep so I put some numbing drops in her ears and tried my best to keep her happy.  By the time I was able to give her her Propanalol she was VERY worked up, and forcing her to take medication she didn't want to take made her more upset.  Then her screaming hit its worst.  I got her eating and pulled out the stethoscope to check her heart on a hunch and sure enough Miss K was in SVT.  Of course I panicked, I was so upset myself I was shaking and my shaking wasn't helping at all.  Miss K was in bliss finally getting to eat.  I didn't want to disturb her to try a physical maneuver, I was afraid it would only make matters worse.  So I tried the physical maneuver of tipping her upside down to change her blood pressure, this I could do while she ate without disturbing her.  It didn't work.  I had to make myself calm down and take a few deep breaths, then I listened to her heart again and it was beating normal again.  I think it happened on its own because she calmed down.

I'll be calling her Cardiologist tomorrow morning to let him know about these 2 new episodes this month.  We'll see if he still wants to wait 2 more weeks to see her or if we'll be moving the date up.

I would love to say I was looking forward to taking her off the Amiodarone but I'd be lying.  I was scared to death.  Scared she still needed it.  Scared she'd have another SVT episode.  Scared we'd end up hospitalized again.  Scared.  Scared.  Scared.  But I really want her off this toxic medication as soon as possible.  I know now that February will not be the month that we end the Amiodarone.  I also know that we'll more than likely be adjusting the medication doses. 

One thing I can be truly be hopeful for is the possibility to change her Amiodarone from a compound to a pill form so we can mix it with food to give it to her instead of forcing it down her throat with a syringe.  She has become very difficult with taking her medications.  It takes 5-10 minutes to get them down her.  The Propanalol is a low enough dose that I'm not too anxious to get it in pill form, I can endure that one.  But we have to give her so much Amiodarone that it's getting frustrating going through her spitting it out, gagging on it, occasionally throwing it all up with her last meal, and most recently holding it in her mouth and refusing to swallow; she's really great at this one!  No matter how far back we tip her head she will not swallow it, she can swallow her own saliva past the medication without swallowing even a drop of it!  No amount of flavoring will help her, we've even tried Hershey's Chocolate Syrup.  It's not the taste, it's the way we're giving it to her, she knows what it is and knows she doesn't want it.  So, if we're keeping her on the Amiodarone then hopefully we can make things easier on all of us.


SVT Episode

I got the living daylights scared out of me today :o(.  Miss K decided to have her first SVT episode in over 3 months.  I panicked...

I wish I could say what caused the episode and how long she was in it before I realized something was wrong...I feel horrible for not knowing, I feel like the worst mom on earth :o(.

I'm almost sure she just sporadically went into SVT without cause.  I think it happened just before I picked her up at one time.  As I was picking her up she started to cry like I'd hurt her, though I'd done nothing to cause her any pain, I thought maybe she just had a gas bubble because sometimes when the bubble is really bad she'll cry like that.  It took me a few minutes to get her calmed down then she seemed fine.  I played with her and even got her to giggle.  She got really mellow after a few minutes of play and just sat on my lap with her back to my chest.  When she sits like this I almost always put my hand over her heart and concentrate on the beats, just out of habit.  She'd actually been sitting like that for about 5 minutes before I realized her heart seemed to be beating kind of hard.  I took her to her bedroom and got out the stethoscope and found that her heart was beating quite quickly though I wasn't sure exactly how fast so I watched the clock and counted it out.  While I was doing this Miss K started to go limp and her head started to nod, I didn't really think too much of it at the moment because she was really tired anyway, it was past her usual nap time.  I ended up estimating her heart to be beating at about 210 BPM.  I panicked.  And she had started to get even more limp, by this point she was even getting unresponsive.  So I did the Physical Maneuver that used to always work on her, I blew in her face.  She didn't like this one at all and she cried but after that she went limp and unresponsive again.  I panicked even more.  I couldn't decide if this was an ice bag situation or what.  I ended up tipping her upside down and bringing her back up, this scared me when she went kind of purple in the face and seemed to quit breathing.  This is the point I started to cry.  I grabbed my phone and called my husband to come home from work (he only works about 5 minutes away, takes him less time to get home and load us up than to call an ambulance, which is also about 5 minutes away from our home).  Then I checked Miss K's heart again, it was definitely beating slower but I didn't bother to call my hubby back.  And then out of the blue Miss K was fine!  Her color was back to normal and she started cooing and playing again.  My husband walked in and rushed to pick her up, he listened to her heart and verified that it was beating at the rate it usually is when he listens to her.  Then I relaxed as he hugged me and we held Miss K together.

I'm really upset by this.  I thought with the medications we were OK now.  And next month is when we were supposed to take her off the Amiodarone to see if she still needs it.  Now I'm pretty sure she does still need it, if she's going to have an episode while on it then she's bound to have more when off, right?  I really want to get her off that toxic medication, but I doubt I'm going to get what I want now.  And I'm down right scared.


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).