Our Fight against Gaucher's Disease type 2 or 3
The response I have received since announcing our plans for our Little Miss Hannah Foundation have been absolutely awe-inspiring! So many people have offered up support for helping to create it, to support, and and to help us get the word out when we are ready. I feel so lucky to have such amazing people in our […]
[Continue reading...]Today was another decent day. I mean, I guess it was decent from the standpoint that Hannah’s agitation and pain was minimal. Hardly decent because she can’t see me, can’t interact with me, and just is asleep all day and night long. Is this what her life has come down to? Brief moments, 90 […]
[Continue reading...]Hannah’s breathing has become more labored and shallow I have noticed. Even with the oxygen in her trach humidifier going, her oxygen saturation only goes up to the upper 80s, very low 90s. Without it, she is in the low 70s. She is also starting to not tolerate her feeds anymore. Her belly is getting […]
[Continue reading...]Of course I spoke to soon on my last post because less than an hour later, she was really agitated, wanting to be lying on the floor. I tried the rescue Methadone like our nursing coordinator wanted us too, which took the edge off a bit, but within 45 minutes, she was really uncomfortable. Back […]
[Continue reading...]After a hellacious day and night yesterday with Hannah awake and uncomfortable most of the day, today was a welcome change. Because we proved that morphine, even at 20 mg, had no effect on Hannah, we decided to discontinue it and replace it with methadone for pain control. So from early morning on, she […]
[Continue reading...]I feel like I am living a nightmare right now. It has come to the point now that I dread seeing Hannah start to wake up because she most likely will wake up uncomfortable, her movements going uncontrollably, and most of all, seeing her writhe in pain from whatever is causing the pain. We have […]
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