Wednesday he had a new echo done and the results came back fairly quickly. The cardiologist said it was worse that his five previous echos. WTF? Did we go that far backwards in less than three weeks? is nitric oxde was put back up to 20 PPM & the ativan & methadone were moved back to Q6 and adjusted for his weight. I was weepy for the rest of the day & could not get to sleep until 7:30 this morning.
When I got to the hospital today his nurse paged Drayke's attending because she wanted to talk to me. Akk. Nerves on edge even more. She called in a few minutes and we spoke for almost 10 minutes. Dr M, little man's cardiologist went over the echo himself and assured the attending it was not as bad as the other doc interpretted it. We have gone backwards a little, definately not all the way back to October. The attending said we are going to work on the weaning again a bit slower than before. She is however wanting the trach to be done within the next week or so. The surgical team is on board with doing both the trach & g-tube at the same time. His cardiologist is ok with the surgery as long as Drayke is clinically stable.
Today, Drayke has been saturating back in the high 90's and his heart rate is lower now. Much more like my good little boy. I think I can breath again.
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3 comments:
Dumb question: What would happen if Drayke is taken off all the meds? What if all the needles and tubes were removed?
Would he just stop breathing? Do you know that for a fact? How do the doctors know?
Maybe you would be surprised.
He is capable of breathing on his own. He regularly over breathes the ventalator. The way the machine is set up is it makes sure he gets/has a minimum of 25 breaths per minute. It can tell if he is the one initiating the breath.
The problem with being on a vent for so long is the malaysia ie floppy, collapsing tracheal tube that occurs with long term mechanical ventilation. With age his tube will stiffen back up hence the need for the tracheostomy. As he grows the tube will be reduced in size/diameter until it is no longer necessary.
The meds he is on have been reduced. He is still on a low dose of sildenifil/viagra, sodium cloride since his sodium levels were a tad low, a diuretic to help keep his lungs dryer & prevent water retention since he is not as mobile as most infants, methadone & ativan. These are all oral meds. The broviac is being kept in place until after his surgery then it to will get pulled.
Drayke has not been stuck by a needle in quite a while due to being able to get blood draws from the central line.
The most important thing with pulmonary hypertension in infants is to try to keep them calm & relaxed. It is the only way the problem can resolve itself. Once his echo's are showing more improvement his sedation meds will be completely weaned.
Hope that explains some. :-)
I hope you don't mind me commenting on your site. I stumbled across your page thru another preemie Mom. I live in Mt. Juliet. Our son has a trach. He is 8 months adjusted and almost 15 pounds. Your boy is doing great on his weight. :-) I haven't read the full story but if you have any questions about trach care please let me know. It's really not bad once you get use to it.
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