Let the Weaning Begin!

Tuesday, February 12, 2013

Awesome, awesome news from Al's Cardiology Clinic. 

Alli has been on Viagra since she was just weeks old.  Weeks.  She was the smallest baby at UT to ever be "experimented" with this way.  And it worked.  Like a charm. 

The road to weaning as been a long one.  It was tried once.  She was actually taken off for two weeks.  She crashed big time.  So Alli's Cardiologist, God love that man, made a pact with me.  And he followed through. 

She's been on a maxed out dose most of her life.  Her pulmonary hypertension has been controlled, but never totally resolved.  It's been thought it was resolved so these are necessarily the first time we've heard these words....   

No Pulmonary Hypertension...

Normal pulmonary pressures....

Keep in mind we've heard these words a time or two so I'm hesitant, but

but, this time....this time we were actually given weaning orders!!

Exciting and scary at the same time.

If all goes well, she'll have kicked her Viagra habit in 4 months.  We'll cut back to 3 does/day for 1 month.  Then 2 doses/day for 1 month.  Followed by 1 dose/day for 1 month.  We will re-echo in 3 months when we have successfully weaned her down to 1 dose a day.  At that time, Dr. S will evaluate her ability to discontinue her final dose.

Please specifically pray for Alli's  heart to remain strong and support her lungs. 
We'll be watching her breathing even more closely and of course my lockdown ritual just got a little tighter!  Please pray her pulmonary artery stays fully dilated delivering blood to the lungs properly, causing no right ventricular hypertrophy or heart enlargement. 

There's going to be a lot of breath holding by this Mama over the next 4 months.

A lot. 

In other news,  I suspected this was coming.  Just wasn't expecting it today. 

We had the first of many to come "talks" about Alli's weight. Good news is, we have 4 clinics next week so I'm sure to get bombarded with her lack of gaining some more (insert sarcasm). 

Gah, all these roadblocks!

Please specifically pray for Alli to gain some weight.  A few pounds does not sound like much, but in this world it is.  And it can take forever.  I know her weight plateaued during the exact same month she came off daytime oxygen and began crawling.  Two excellent reasons for her weight gain to have stopped.  The bad news is, if she doesn't pack on a few pounds she will not be able to do a hunger based tube weaning

Look at it this way, she was a little over 14 ounces at birth.  She just turned 2 and weighs 22 lbs.  She has had NO weight gain since last April 2011.  She's been 22 lbs for almost an entire year.  Alli likes to buck the system and prove that just because she has a g-tube, it doesn't mean she can gain weight. 

Geez Louise this kid. 

But I think we'll still keep her. 



gJackie



 

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