November 21, 2008
"First of all, I want to say thank you to all you beautiful wonderful people with your kind words and deeds that speak volumes to the kind of love that is out there for us. I am speechless. Your words get me through.
This is actually an update on daddy. Last night after I got back from Karns to pick up some "olis" for Kole (ravioli request), I returned to find my husband relapsing in the room. He said "thank God you're back" (I didn't feel I was gone all that long). By the time those words were out, he was already in the bathroom vomiting up acids. But this time, the pain seemed to be so much more severe than usual. He noticed blood in the vomit. He was writhing and wriggling on the floor and moaning and crying, to the point that it actually scared Kole and I. He kept saying "not again, not again". We knelt and prayed as hard as we could, feverishly, I would say. My husband kept praying and pleading to the Lord to not let him suffer anymore. I called my mom to see if she would come up in case he wanted to just go home to be in a comfortable place, which is where he likes to go when he gets sick. After 15 years of suffering through these episodes, he just feels like no one can really do anything for him and he may as well just go be "comfortable" and suffer through it.
We convinced him just to go downstairs to the ER and get admitted. I said "At least then we'll all be able to be in the same building." They brought a wheelchair he could barely sit up in and we made it down. Thank you August for watching Kole while I could be with my husband.
They started IV fluids and pain medication and nausea medication, both of which did nothing, so they upped the doses. Finally he was comfortable. They took lot of blood tests and are continuing to collect his urine.
A very intelligent doctor came in and talked with me about what's been going on with my husband most recently and I spilled the beans about how he just hasn't really been able to get better since July, and his diet, the fatigue he's been having, the whole nine. He asked amazing questions no doctor had asked before, like if he had any skin problems. Why, as a matter of fact, he does! He is riddled with psoriasis. I felt positively that the Lord had brought us here after we'd prayed so hard upstairs.
Finally another doctor came in and asked how this episode differed from other episodes. We said it really didn't, it came on in just the same way, after a bowel movement. Only the pain was more severe. The doctor said he had reason to believe this episode was unlike any other, because my husbands blood showed very high levels of lipase. Pancreatitis.
They are trying to identify the cause of his pancreatitis, the CT didn't give much information. The original doctor thinks there's a link between the pancreatitis and the skin problem - celiac disease. So we are now eagerly awaiting the results of some more blood tests.
THANK GOD. The resounding sentiment overflows. They finally found SOMETHING and not NOTHING. A reason.....a real reason!!!!!! WHOOOO HOOOOOOO
We were in the right place at the right time. My husband is admitted here now on floor 5. I have been toggling back and forth between him and Kole on floor 7. What an interesting couple days. I tell ya, I feel like I am going to wake up soon.
God bless and enjoy each wonderful beautiful day...."
November 22, 2008
"Just wanted everyone to know we are all finally home, as a
family. Kole was discharged Friday and my husband on Saturday afternoon.
Kole's treatment continues as usual on schedule for now, while my husband awaits the results of the blood work to check for celiac disease.
Another doctor came to speak with my husband earlier today, and seems to
be convinced that he has what he was originally diagnosed with,
Cyclical Vomiting Syndrome. They are still not ruling out celiac
disease, it could be that he has both, but hopefully not. They feel
his CVS has just gotten out of control considering it's gone so
long without good treatment, and that presently my husband is under more
stress than normal. CVS is a rare condition typically found in
children, it tends to taper off into adulthood, but is
characterized by episodes of intense pain, nausea, and vomiting,
followed by periods of health. It is also known as an abdominal
migraine, where migraine sufferers get their pain in their head,
he gets his in his abdomen. It is treated mainly by prevention,
with my husband having to take daily medication to relax his stomach,
combined with an anti-nausea med. There is also a medication which
he's been given to take when he feels an attack "coming on", and
it's what migraine sufferers take, it dissolves under the tongue.
He was told to take this and go to a dark room and relax, and this
should help stop an attack before it gets severe.
Thanks to everyone for keeping us all in your prayers. God bless."
November 24, 2008
"As if a force out there was saying "Not So Fast...." here we are again in the darn hospital. We slept in our own bed Saturday night, but that was it for now. Kole got a fever 101.2 last night and we got admitted, so here we are at Hershey again. We hope to be home for Thanksgiving. Kole needs to receive some blood today, his red count is low. Otherwise, he is quite active and resuming normal eating and drinking. Tylenol is awesome!
Right now Kole is getting some blood cultures and cefepime (antibiotic) but that's it for now. The big concern is that his counts are on their way down after the chemo he just had, and he can't afford an infection.
Daddy is doing pretty well, he still has his moments. We are still waiting on the result of the celiac test and pray that he just has comfort every day to enjoy being with Kole.
A belated notice for everyone - in the York Daily Record today, a friend of my husband's, Beth Vrabel, who writes the "Smart Mama" column, wrote a small article featuring Kole. It can also be found on www.SmartMamaPA.com, if you don't get the paper, check it out, it's really very good.
That's all for now and I will keep you posted. Praying to come home!!!!!"
Today I focused on Koles face - namely his nose and upper lip, something I haven't been satisfied with for awhile. I now feel super great about them and may consider his face finished (for now at least). I would still like to darken some tones in his hair and I still have work to do on the other pieces of the picture. I also worked on his bedding today and a bit of touch ups on his shirt and more shading on his legs.
My oldest daughter has been asking for a craft lately and I had been perusing Pinterest but not finding anything worthy. Two nights ago Violet came into my dreams and asked me to craft her a pot of violets. She showed me just how she wanted them done. The next morning (yesterday) I had forgotten the dream and was searching Pinterest for a suitable craft when it all came back to me in a flood. I thought about it for a minute and clicked back to my Pinterest profile, there it was 4,444 pins. I searched 444 symbolism on Google and found I was to pay attention to my intuition and encouraged to continue on my path. I was told I have nothing to fear in my divine life purpose and soul mission. Well that was enough for me, we set out to create some flowers for Violet. The kids did nearly all of the painting and I completed the cutting and assembly - so it was a collaboration of sorts. I feel Violet is happy and my kids and I had a wonderful time crafting together. I thank God and the Universe every day for the magnificent talents they have bestowed upon me to use for the greater good.
Thanks to everyone for keeping us all in your prayers. God bless."
November 24, 2008
"As if a force out there was saying "Not So Fast...." here we are again in the darn hospital. We slept in our own bed Saturday night, but that was it for now. Kole got a fever 101.2 last night and we got admitted, so here we are at Hershey again. We hope to be home for Thanksgiving. Kole needs to receive some blood today, his red count is low. Otherwise, he is quite active and resuming normal eating and drinking. Tylenol is awesome!
Right now Kole is getting some blood cultures and cefepime (antibiotic) but that's it for now. The big concern is that his counts are on their way down after the chemo he just had, and he can't afford an infection.
Daddy is doing pretty well, he still has his moments. We are still waiting on the result of the celiac test and pray that he just has comfort every day to enjoy being with Kole.
A belated notice for everyone - in the York Daily Record today, a friend of my husband's, Beth Vrabel, who writes the "Smart Mama" column, wrote a small article featuring Kole. It can also be found on www.SmartMamaPA.com, if you don't get the paper, check it out, it's really very good.
That's all for now and I will keep you posted. Praying to come home!!!!!"
Today I focused on Koles face - namely his nose and upper lip, something I haven't been satisfied with for awhile. I now feel super great about them and may consider his face finished (for now at least). I would still like to darken some tones in his hair and I still have work to do on the other pieces of the picture. I also worked on his bedding today and a bit of touch ups on his shirt and more shading on his legs.
My oldest daughter has been asking for a craft lately and I had been perusing Pinterest but not finding anything worthy. Two nights ago Violet came into my dreams and asked me to craft her a pot of violets. She showed me just how she wanted them done. The next morning (yesterday) I had forgotten the dream and was searching Pinterest for a suitable craft when it all came back to me in a flood. I thought about it for a minute and clicked back to my Pinterest profile, there it was 4,444 pins. I searched 444 symbolism on Google and found I was to pay attention to my intuition and encouraged to continue on my path. I was told I have nothing to fear in my divine life purpose and soul mission. Well that was enough for me, we set out to create some flowers for Violet. The kids did nearly all of the painting and I completed the cutting and assembly - so it was a collaboration of sorts. I feel Violet is happy and my kids and I had a wonderful time crafting together. I thank God and the Universe every day for the magnificent talents they have bestowed upon me to use for the greater good.
I believe because you are such a kind and giving open person it is easier for them to contact you. It means so much to me that she did!
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