Sorry for the lack of updates, but I'm back on my game (I think, LOL) and I'll try to get you all up to speed. We are still up on the 4th floor of Children's Hospital Fox Valley. Danny is still very dependent of his Bipap, but we were able to get him off it twice today for about 1.5 hours each time, WAY TO GO lil man. We started to feed him very very slowly which he seems to be tolerating with the slow rate and anti nausea meds on board. He does have a major gut problem today. His stools have turned into water, he is having many dirty diapers, and his stomach is bloated today. With the extended tummy comes added discomfort, he eyes are red and have been tearing all day, Danny is flaring his legs around at times and whining too, which just breaks my heart to see. They ran another C Diff test today and that too came back negative, but that's for now, LOL. So we pretty much sit and wait to see how Danny does....Danny recovers only on his time and we know all to well what happens when we try and rush him. Like Dr Kasper said today..."Danny has just fallen off the wagon and it will take us some time to get him back on it". Unfortunately he seems to be taken longer and longer to recover with each illness. I know the hospitalist called down to CHOW to talk with Pulm, dietitian, and GI for some advise and ..... wait for it.......they didn't call her back, UGH! Well I see they treat "their" own just as they would me, so I'm hoping they will call back by tomorrow. They are concerned with the lack of Danny's protein in his diet the "puffy" look he has to him so they are consulting with the dietitian to see if we need to add a protein supplement to his diet.
After having the blood patch on Monday I was feeling much better. I was a mess to say the least. I was so disappointed with myself on how awful I was feeling and how useless I was. I was VERY VERY scared with what the future has in store for me and my family when the start of this journey wasn't starting off so well. I still have a dull headache and my back is feeling soar, but why wouldn't it when I've had 2 needles stuck in it, LOL. The Neurologist doctors office called this morning and my lumbar puncture and labs have come back abnormal. So I am going in Friday morning to go over the results with the doc. I'm not sure what abnormal means.... abnormal but normal for MS or is it something totally different. Time will tell and I will have my answers Friday morning.
I have taken this down time in the hospital to start to put together a Care Plan....pretty much a very detailed document of Danny....everything and anything that is envolved with him. I've gotten alot finished but I know there is more that needs to be put down in black n white. I'm sure once we get a nurse in and go through all of Danny's stuff there will be something that I've forgotten to put down. I am finding alot of dead ends in looking for a nurse to come and help me out with Danny, but I will NOT give up. It's another experience I can only hope that things will be worth it in the end and get easier once we find a nurse that will fit in with us.
I have been totally out of the loop with the progress on the house so nothing really to report there.
She's volunteering for her brother's program. Squee!
12 hours ago