Miss K Update

Miss K's EP Cardiologist was in the Cath Lab all day the day I called to speak with him about Miss K's more frequent SVT episodes so he never called back.  I called the next morning to make sure we hadn't been forgotten and within an hour he returned my phone call.

And the verdict is...

Miss K is now taking 1.2 mL Digoxin twice daily along with her Propanolol 3.2 mL 3 times daily.

The conversation was a bit discouraging and brought a lot of questions to mind.

The EP Cardiologist is hoping the Digoxin will help make her SVT less frequent and easier to manage but he isn't guaranteeing it, he actually doesn't think it's going to do much for her but he's willing to try it as it's the easiest option to try first.

IF the Digoxin doesn't work, and we will know within a week if it's going to, he is going to schedule to have Miss K hospitalized at Primary Children's Medical Center ASAP.  She will be hospitalized for observation only as they start her back on the Amiodarone at a very low dose, most likely back to the small dose she was on when we stopped giving it to her.  The reason for hospitalization is to keep her on constant EKG monitoring to make sure she doesn't react to the Amiodarone any differently than she was when she was on it before.  They have to make sure her heart rate stays at a steady and safe pace without any extra beats or anything dangerous.

I have cried over this for a few days.  I'm trying to be hopeful the Digoxin will work, I really want it to work.  But the EP Cardiologist was so sure it isn't going to work that he has discouraged me.

The thought of hospitalizing Miss K for any amount of time is terrifying and a bit depressing for me.  He estimated it could take 3-5 days before she can be released...with Miss K's track record I am scared it will actually end up being 1-2 weeks or more.  I mean seriously, how can I be hopeful that 3-5 days is going to be it when we were told 24 hours was all she needed a year ago and we ended up there for nearly 4 weeks?!?

The bills alone are terrifying to me.  If it needs to be done it needs to happen before the end of the year so we can take advantage of our insurance deductible being maxed out, this would help immensely.  But doing it before the end of the year puts us at risk of ending up staying in the hospital through the holidays, very much not something I'm not willing to risk.

Having a 3 year old son at home and being 7 months pregnant is also terrifying.  I really can't imagine sitting in a hospital room for days, or weeks, with my baby while my 3 year old is being taken care of by someone besides me and while I'm trying to deal with pregnancy hormones.  We have a lot of family who can help us with our son, the issue we'll be dealing with is that Big Brother is in Preschool two days a week and I am paying more than we can afford to have him there, we cannot have him skip days as they are not refundable.  Whomever gets to watch him for the duration of Miss K's stay is going to need to take time off work and away from their own families to come sit with him at our home so they can take him to school and try to keep up some kind of regular routine so he won't have a flip out moment about having Mommy and Miss K gone together again.

And the most terrifying thing for me is sitting in a cramped hospital room with my wiggly, very busy, very mischiveous, 15 month old baby girl.  There is no way they are going to get her to leave an IV in, and we know they will require an IV for her stay.  They will not get her to stay in a bed for any amount of time other than sleeping.  She is the most dramatic baby when it comes to eating and I can't imagine trying to get her to eat there in the hospital.  All I can see is stress.  And tears.

We can use all the prayers we can get that we can avoid the hospitalization option!!!!  I have days I feel good about the Digoxin and other days I cry thinking "it's not going to work just because we're due for another trial in our lives and this is it."

On a bit of a lighter note.  Daddy and I have been in search of a good, reliable Pulse Ox device to purchase.  We have not had much trouble finding them but we have had trouble finding a good price that fits our budget.  The ones that are most affordable are not as reliable with pediatric patients as we need it to be.  It took us over a year to finally decide to break down and purchase one.  We were not in a hurry before since Miss K was so young and we were not inclined to leave her with anyone for any amount of time because I was breastfeeding her and also her SVT episodes were very infrequent, averaging one about every 3 months or more.  But now that she is giving us SVT troubles again, and she's old enough for us to be more prone to leaving her, and Daddy and I have not had enough date nights or time away from the kids lately, as well as the fact that baby #3 is on it's way come February and we WILL be leaving Miss K and Big Brother with family during the delivery and for nearly a week afterwards (I have c-section deliveries so the hospital stay is at least 3 days, usually 4), we are needing something to help us be more comfortable leaving Miss K with someone for more than an hour or two.  Having a Pulse Ox in the diaper bag with clear instructions on how and when to use it and what to do if her heart rate is too high is likely to make Daddy and I at least a bit more comfortable with the thought of leaving Miss K with a sitter.  A stethoscope is great but only when the person using it knows what Miss K's heart sounds like when in SVT and it's not a sound that's easy enough to describe.  Getting Miss K to sit and be quiet for a whole minute in order to count out the beats is nearly impossible so we are not willing to just rely on a stethoscope for family and sitters watching her.

1 comment:

  1. I'm sorry. This is the worst. Of course I hope you are in and out of the hospital in no time. I can't imagine as I can't contain my 15 month old to a room without being in complete pregnancy exhaustion. As far as bill go- I'm sure you are aware, but just in case, if you spend more than %15 of your income on health related costs you get to take a deduction for it in the amount of the overage. I know it has helped us the past two years.