There is some good going on around here!
Gabe recently came off his Sildenafil (another name for Viagra), the medication he has been on for the past 2 years. He takes it for pulmonary hypertension.
Before Gabe went into the coma, the pulmonary hypertension was very hard on Gabe. Since he already had difficulty breathing from lung disease, his heart would have to work harder and the hypertension would put him into a crisis where he could just spiral out of control....
....respiratory distress, leading to cardiac arrest..... he would need to be sedated, put on a ventilator, given epinephrin to start his heart up again, and put on Nitric Oxide to keep the blood flowing from his heart again. His cardiologist put him on Sildenafil as a last resort and it ended up helping tremendously.
Since he went into the coma and no longer has difficult with breathing (since, um, he can't breathe...) his pulmonary hypertension has been under control and hasn't given him any trouble for about a year and a half now. He's been on it preventatively until we knew he was ready to come off, and now... Gabe's ready!
There is never the good without the bad around here, of course.
One of the night nurses just put in her 2 week's notice. Please pray another nurse comes along, and that we figure out what the right thing to do would be concerning nursing (decisions to be made).
Gabe has seizure-like episodes that are not seizures, although they look just like them. He has been on an anti-seizure medication to see if it would help. It hasn't.
He is coming off the medication since it's not making a difference, but it saddens me that there's "nothing they can do". I hate to think of him having these indefinitely. They are hard to watch, painful looking, and I'm sure much harder for Gabe to have to endure.
My camera is broken so I don't have any new pictures to share. The only time I can take pictures is when someone brings their camera over here :)
More to share... another time.
Shared Struggles The Documentary
7 months ago
5 comments:
Hey,
Sorry to hear about the nursing. Just know there are more good nurses out there. It may just take a while to find them. Glad he's off the med. It just makes life eaiser for you. I can only imagine how hard that must be to watch him have a non-seizure. Would May be a good time to get together? Hnag in there
Well, great news about the medication. I always want to throw a party when we are able to take one of Marissa's meds away.
Sorry to hear about the nursing woes. It seems those with nursing never get to a place where it works well for very long.
And having to watch him have the pseudo seizures, ugh. I am so sorry you have to witness that and know there is nothing you can do.
Praying for you guys as always,
Alicia
Sometimes it would be nice to get more than baby steps, but if it's baby steps we get ... we'll take it! Congrats on losing the blue pill.
Sorry about the nursing situation. It is soooo difficult to start over with new nurses. Praying that God sees fit to send you Mary Poppins (with trach and vent experience!) I say that because I call Jack's nurse Mary Poppins and we should all have a Mary Poppins in our life.
Love ya'
Ann
Congratulations weaning off the med! My heart goes out to you with the nursing. We just received an official report back from the state department of health confirming the validity of our complaints made concerning our first home care agency and they informed us that they were in violation of state law. I hope you continue to get the quality of care that Gabe deserves.
Jenna
Sorry about the night nurse! Praying for an amazing new nurse for sweet Gabe.
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