Noah is in need of some extra prayers. It's hard to pinpoint just yet exactly what is going on or just how serious it is.
His urine has looked appalling for several days (a week, maybe?) and he's having bleeding from all three of his implanted lines - his central line, his g-tube, and his supra-pubic catheter. As of today there is also pus draining from his central line.
Routine labs done Monday showed that his white count was a bit low (typical Noah response to illness), all of his electrolytes except sodium were low, his platelets had dropped below normal, and his liver enzymes (given off by the death of liver cells) had jumped up above "his normal." Additional results indicated that he may be coming down with something viral.
A urinalysis done last night showed very yucky urine including yeast. Labs done first thing this morning showed elevated PT/PTT which means his clotting times have slowed. I truthfully know very little about these specific labs - I know what they are testing for, but I have no real perspective on how elevated they need to be before it's really a cause for concern.
His white count has dropped significantly which generally signals that he's getting sick/sicker.
We don't have last night's urine cultures back yet so we don't know if the yeast is more trace level or something more serious. Dr. B is switching Noah to a different antifungal (he's been on I.V. antifungals for months) and working with our TPN pharmacy to address the electrolyte issues.
Noah is clearly very tired and very uncomfortable. Even in sleep he's curled up in a tight ball and grimacing. Apparently there are several viruses in the community which cause a lot of body aching - I know a few of teh children and I have had sore throats, aching, and fatigue. Dr. B has had us start Tylenol every 4 hours. Please pray that we can get this I.V. - it is available, but when we last tried to get it last year, it wasn't covered. We're having to use Tylenol suppositories which are very unpleasant for him.
This is one of those times when he could have something fairly mild and we've already seen the worst. It could also be the start of something extremely serious. Elevated clotting times are nothing to be taken lightly and I'm concerned about the bleeding we're seeing from all of his lines. I just don't have enough medical knowledge to really understand this situation. Generally speaking, viruses are very, very hard on Noah and have historically resulted in his being seriously ill a number of times.
Dr. B will be coming by the house after work today to look at Noah so I should have a better sense of things at some point today. Noah doesn't look terrible - he's alternating playing Legos with lying down and resting. He clearly doesn't feel great, but he seems able to be distracted by his Legos and/or iPad while he's awake.
If you haven't voted for Noah in his bike contest, please do so at https://www.friendshipcircle.org/bikes/2014/03/noah-5/?shttps://www.friendshipcircle.org/bikes/2014/03/noah-5/?s . Remember, be sure to grab your spouse and children to have them vote also. We are asking folks to share on Twitter with the hashtags #bikeforNoah and #mitochondrialdisease . Noah has over 12,000 votes but is staying pretty consistently at about 1K - 1.5K votes behind first place. Please share this in any way you can - FB, Twitter, etc. Remember, you just click the big green "nominate" button to vote. NOTHING will change to show you voted - the button won't change, you won't get a "thanks for voting" message, etc. This has confused many people. Depending on the amount of traffic to the site, you may or may not see his vote count go up right when you vote. Your family members may each vote but will need to use different devices. You can only vote one time each.
While there are now five bikes being given away, they do NOT go to the top five places. One goes to the first place winner and the others are given away in a random drawing. Noah will need a great deal of momentum to reach first place and stay there. We are blown away by the number of votes he's received - please keep helping!
I will update here and/or on FB later when I know more about what's going on with Noah. Jeff and I are both pretty uneasy but that may just be our emotions getting the best of us.
Blessings,
Kate
