Things are not going great unfortunately. Jacob is continuing to have excessive diarrhea with daily blood in his stool, fevers, and elevated heart rate. They have run a gazillion tests and they all come back negative. Ultrasound and CT scan of the tummy have been done. We know that the structure of the bowel is ok and working. It starts to point more and more to a nasty GI bug for Jacob. I haven't seen Jacob this weak and pale in years. I am scared that he will have a crash, if he doesn't start to recoup very soon.
With the excessive diarrhea, he hasn't been able to eat. He is on IV fluids around the clock. So, despite FDA having approved epi-743, and the fact that the pharmaceutical company has promised to ship it to Jacob, we can't start the drug until Jacob is eating again. The medication needs to be given with fat at the same time. We are also wondering about his ability to absorb the medication with his excessive diarrhea right now.
The other little hiccup is that our pharmacy doesn't want to deliver epi to us. The inpatient pharmacy at Children's has agreed, so we can start the drug inpatient, but eventually we do want to go home! We need to find a pharmacy who is willing to carry epi for us.
A little brightness is that his seizures are slightly better. They are not where we want them to be, but we have had some pretty nasty seizure days in the last 2 weeks. Today was not one of them. Today was diaper day.
It is time for the stars to align for Jacob. I know that a week ago I didn't even know that epi was a possibility for Jacob. And now that is the only thing that I think can truly help our boy. That drug is giving me some hope. He just needs to have enough strength to fight this awful GI bug, so we can go back to treating what we originally came in for. I am also so very aware of that Jacob's mitochondrial disease is always lurking, ready to show it's ugly face, and hoping that we have enough time to get Jacob stable and able to try epi-743. I am tonight hoping for a better day tomorrow, and for the stars to align for our boy.
Much love,
Maria.
Praying praying for the GI bug to leave Jacob's little body!! Praying that he has a good nights rest, diarrhea stops, he is able to eat, and that all works out with the epi being available for home use. It is time for you all to go home! Hugs, Linda
ReplyDeleteThank you so much, Linda! We are not yet ready to go home, but wish to soon be in that place!
DeleteSending hope & hugs.
ReplyDeleteThank you, Amanda!
DeleteHi Maria, you don't know us, but we just heard through Hilary about Jacob. We live in Holland, far away from where you are..but we are praying for your little boy. Our daughter Anna is six too. Drugs are great, thank God for drugs, but we also believe in a God that gives hope and does miracles and we are praying that Jesus will do something special this week. A few years ago my dad had a massive heart attack that nearly killed him. Lots of people all over the world prayed for him and he fully recovered. All the best,
ReplyDeleteAdriaan & Rebecca, Holland
Thank you Adriaan! One of my best friends live in Netherlands too.
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