Monday, December 12, 2016

Bless His Heart

It's a crazy time for Spencer and his poor heart.  Today was especially hard for a number of reasons.  He is having so many 'events' that he has to download the computer connected to his ILR multiple times a week, today it was multiple times in one day!  They have it set to 4 events and then you have to download the information to the Hospital so it doesn't overwrite itself and erase the data.  He has been having events all day long!! Pain, Dizziness and on the verge of passing out all day.  His blood pressure is so low but his heart rate is high or normal.  He's been hanging out at 95/40 with a heart rate of 75 mostly.

He was suppose to start a new heart medication today but I don't have a good feeling about it so I told him to wait.  It is to treat his Tachycardia- fast heart beat but the side effect is a lower blood pressure. There is no way, he can afford to have a lower blood pressure.  The other medication he is on is to treat the Bradycardia- slow heart beat, by bloating up his arteries by retaining salt and fluid so there is an increased pressure and a faster heart beat.  I don't really understand all that but it's not exactly helping much I don't think.

I asked the Pharmacist about both medications.  Spencer has been having chest pain frequently and he thought it was the medication he has been on.  The pharmacist said chest pain wasn't listed at all for side effects.  So, it's likely a 'real' problem with his heart, not medication induced.

Tonight, he said, "Mom, should I take this new pill before bed so I can just slip quietly away through the night?"  He was joking, as he usually does but I burst into tears.  It's just one of those days.  I wish there were answers.  I wish there were answers for him and I wish there were answers for other kids I know who are suffering.

If you've been following along for awhile, I posted a couple of months ago about a little boy who needed some prayers.  His name is Rowan.  The second bone marrow transplant worked but he has a fungal infection in his lungs, he is on constant dialysis because his kidneys were destroyed by the chemo drugs, he has lost his hearing, he has a blood clot in his femoral artery, an infection in his central line that has spread to his blood and a host of other problems.  This morning, they thought they would need to intubate him because he is struggling to breathe on his own.  His body is filling up with fluid and he is one tired little 9 year old who has spent the better part of this entire year in the hospital.  I haven't stopped thinking about him or his sweet mom who has never left his side, not even once!  They are in Seattle but the rest of the family is home in Texas.  She orders things she needs from Amazon so she doesn't have to leave him.  I just can't even begin to understand how she is doing this all alone.  Her husband is taking care of the other kids at home but he just had surgery and three weeks ago, her mother died unexpectedly.  It's so much!  It's amazing how much the human body can take and still remain alive.  I pray so hard for this family; they have a faith that I have never seen before.

Somehow, things will get settled for Spencer.  As much as I don't want him to have surgery, I feel like we are running out of options to keep his heart beating in a regular and consistent manner.  I really feel like it's time to do some intervention.  It's affecting his quality of life.

He is also getting sicker and sicker with his GI problems.  Even gluten free food makes him really sick.  Rice, plain old rice makes him really sick.  There is literally nothing he can eat that doesn't make him sick and weak.  It's frustrating for him.  I have tried so hard to fix FODMAP foods.  I didn't think it was going to be a miracle fix but I did think we would see some small improvement.  I called in to our GI doc tonight in hopes that she will call me back tomorrow with a miracle in mind.

So, that's that...Oh my job interview I was suppose to have today got postponed...maybe Tuesday.  I got a call back on another job I had applied for a month ago!  I'm not sure when the interview will be but they said they are interested in talking to me.  The interview tomorrow is for a drafting position in the city but he would let me work from home as long as I met his deadlines.   It is only part time.  The job I got a call back on tonight is a writing/research position for a Marketing Firm, specifically writing articles on women's health issues.  I'm excited about this prospect.  I love writing and I love researching!  We'll see.




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2 comments:

  1. Research writing on women's health issues sounds like a perfect fit for you! Praying for Spencer! Praying and heart broken also for Rowan and family.

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    1. I can't think about anything but Rowan. I'm so sad and feel helpless.

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