Latest Facebook update from Noah's Mom Kate:
VERY bad labs today. Liver numbers are 50 times higher than they should be (they are measuring the enzymes put off by the death of liver tissue) and rocketing up fast. They were 1,100 a week ago and are 1,800 as of today. BUN is up only slightly (bad kidney number) but Noah always has a lower than normal BUN so having it elevated is significant. Bili is up a bit and there are lots of other labs that are off.
Worse of all, the MRSA is still growing out in his urine after almost 2 weeks of antibiotics, AND he is growing out another bacteria as well now. Yes, he GOT a new bladder infection while on antibiotics. Both bugs are obviously resistant to the Zyvox he is on.
The swelling continues to worsen. He doesn't look like the same child. He is still as sweet as ever, though, and he just doesn't complain. He did get teary and choked up yesterday and quietly told me that Mary Faith gets to go to birthday parties and to friends houses and he can't go to them anymore. I loved on him and told reminded him that he's been to lots of birthday parties, but he wasn't buying it - he was sad that he can't go anymore. He also pointed out that he can't play hide and seek anymore because it is too hard to walk.
I don't know how much more my heart can handle.
Much to my surprise I just got word
that I have a short term contract for
1.5 months
and it is only a 5 minute walk from my home.
The contract may continue after March
but it is yet to be determined.
I start God willing February 16th.
Have lots to do to get ready...
In all your works, either at home or at the place of your service, do not forget that all your strength, your light and your success are in Christ and His Cross; therefore, do not fail to call upon the Lord before beginning any work, saying: Jesus, help me! Jesus, enlighten me! Thus your heart will be supported and warmed by lively faith and hope in Christ, for His is the power and glory unto ages of ages.
St. John of Kronstadt
We are right back where we were three weeks ago today. Noah's fever has continued to climb and isn't responding to fever meds (tylenol and ibuprofen alternating every 4 hours). His fever was 104.9 the last two times we checked.
He now has some fluid in his right lung, which is where the fluid build up started last time. The difference is that last time, we gave lasix which eventually worked to pull the fluid off. He's been on lasix ever since then, and this time he's getting the fluid in spite of the lasix. I just spoke to his infusion pharmacist and he said that the other good choices for diuretics are not available IV. Unless they can find something IV that will work on this fluid, it could continue to fill his lungs.
He is making urine, but it is very dark - butterscotch colored. He is retching a LOT. He's insisting on sleeping sitting up - I've managed to put the head of his bed back just enough so that he isn't falling forward, but with every tiny adjustment back he opens his eyes and shakes his head "no." It probably helps him breathe better to be upright so we're only barely reclining him.
Any touch or movement makes him start retching again, so I don't even feel like I can climb into bed and snuggle with him. I slept on an inflatable mattress by his side all night - using the word "slept" very loosely of course.
Please go here to send Kate a word of comfort during this time.
Did a simple version of the Holy Supper.
Borscht, Perogies, Bread, Fruits.
The bread I saved from my Oma's
Panahkyda.
Today liturgically is her birthday;
as well as in actuality my Grandpa's birthday;
I talked to my Grandma today
as I try to always do to remember my
Grandfather;
my Grandma always told him he was born on the
12th day of Christmas,
Epiphany as they know it....
The borscht turned out really well!
Did it a simple way as I did not have
a lot of time.
1 can beets with juice
1 can northern white beans
2 very big carrots chopped up small
3 large potatoes chopped up small
half of a larger can of tomato sauce
sauteed until caramelized onion with lots of margarine
added three or so cloves of garlic half way through
and some ground sea salt and pepper
chopped up and added lots of dill at the end.
Latest update on Noah
from his Mom Kate Estes via FB:
I found out that my Uncle, one of my Oma's sons,
fell on New Years Eve
and broke his pelvis.
Lord have mercy.
He is still in hospital and they can't do surgery
and there will have to be some rehab for him.
Please I ask your prayers.
One of my close friends just lost her Grandmother.
As much as I had wished to have my house
clean for New Years
I was too sick to manage getting the whole house
prepared.
I am slowly getting better from the bad
chest cold I have been having
and was able to go to my friend's New Years Eve
Dinner party which was really nice.
I am hoping to get my house cleaned tomorrow
and that I finally will be well enough to do so.
I love my strand of white lights
that a dear friend gave me.
