What a Day....

So, I got to the hospital yesterday and slept over night. Yesterday was another hectic day. Do I even remember it after today's blur of events. I cannot believe how my mind is clear and I am doing everything that I need to do. Is it overdrive, or am I more healed from the Lyme disease??? Guardian angels are certainly with us, and I strongly feel that Ken is meant to do more here, even though we know not for how long.

So this new room, as I stated, is like a hotel room. What a difference these little amenities make.


Yesterday, I walked into the room , went for my notebooks, and Ken asked me what I was doing. I told him that I was getting Michael's number to call him. He asked me why. I said that I was going to ask him for help. It was as if we were talking in our house. He is now conversing with us, asking us questions, offering up statements, responding to the medical staff. His sister came in, saw this, hadn't seen him in a day, and was bowled over. And he was tired, but was up for 4-5 hours early evening continuously interacting, w/a couple of tiny snores in between. Wow.

But, last night I slept at the hospital again, and he kept me up til well after 4:00 am. Nothing I said convinced him. He moved , and squirmed, and moved, and contorted his body to slink as far low on his bed as possible to try to reach the catheter, poor baby. He even said at one point,"Aw, come on!" I laughed. Kept reaching for his hand to try and let him know that we had to sleep. He finally fell asleep, exhausted after about 4 1/2 hours of this squirming, and multiple nurses and aides coming in to redo his restraints . If he didn't have the restraints, he would yank out his feeding and catheter tubes. This would be painful, and would set him back...

I worked so hard last night. Ken is the consummate athlete and is very adept. Unbelievable. Well, I tried to sleep through a few awakenings and 'tending- tos' from the staff. It was a couch that turns into a bed. Not great cushioning, but far better from a semi-recliner in a cramped room with more monitoring.

This morning, was an abrupt awakening. Didn't get a chance to do my morning count back and prayers. His internal medicine doctor came, and suddenly the man was extremely abrupt, curt, and very non-informative. I walked away to the family room, very upset. I cried. What had I done to receive this reaction? Discrepant information from Ken's oncologist last night and this doctor- who, til this am was quite kind and easy going. Calmed myself down, talked to others to create liaison people as I do not want to get upset about this lack of communication. This is the doctor who went out of his way to make things easier for us by bringing us to the Cancer Unit for a calm room. ?????

I asked myself,"Who is putting pressure on this man?". Of course, I did not appreciate being the brunt of his frustration. Later found out that he was under pressure, meaning, from someone in the hospital. Maybe even for getting us into this unit. And, I think that 2 weeks is the hospital's initial payment period from insurance. Suddenly I was feeling great pressure to move Ken, as he is doing better. Of course, I have been asking about how to transfer him since ER! Anywho, not to go into so much detail about all of this, but things started to move.

The plan is to try and get him into the top Rehab. hospital on the East Coast.Hoping that he gets accepted, and that insurance allows this.We would at least like for these experts to see him. We know that this may not work out.So many little details. Met the social worker for the cancer unit who in a very short period of time did so much. Another head nurse suddenly started to get involved. Did I mention that the VP of nursing is the daughter of my Mother-in-law's friend? No, I did not ask to speak to anyone. Just asked what her last name was, as I had forgotten it.The connection was made in a very innocent question. Amazing. Don't care. Just wanted to move on to do the best for my hubby and family. After all, our situation has changed drastically in an instant. Asked for a patient advocate after the am doctor mis-communication. A doctor who cannot answer simple questions as to tests being performed makes the whole process harder. We surely understand the gravity of his situation, although some may not think so.

A lot of confusion about the barium swallowing test.... but, today Ken finally had it. Yesterday his oncologist told me that he had failed it. I was totally confused, as he hadn't been taken yesterday to have it! When I asked his in house doctor about it, the information received was less than concise, and absolutely did not jive with what the oncologist said . Lack of communication wrapped up in this matter...not answering questions, being cut off when asking my question...total confusion .

KEN had andPASSED THE BARIUM SWALLOWING TEST today!!! This evening, a tray of food came in for him! Yoo Hoo! He tried tiny tastes of 'corn on the cob' , gravy, a thickened soup, ice cream, and ice tea. Don't get so impressed, it all equaled less than a teaspoon. He had some applesauce and ice cream for a speech therapist test 2 days ago. Before that, Thanksgiving was the last time that he ate any form of food other than the nutritional drip. ( He threw up 3 times on T-day).

Well, his creatinin level has based out at a reasonable number, his chest has been clear. A little congestion here and there, but lastly, it was clear. The Vena Cava Filter is in place helping to prevent most or all possible pcs. of blood clot that may have been missed, or that may occur, for the lower part of the body. They removed him from one of the anti-seizure meds, which they feel caused his platelets, or mostly caused his platelets to continue to lower, and I was finally allowed to start giving him his Protocel- powerful antioxidant nutritional supplement that he takes. They will not use the feeding tube for this, but at least I can administer it.This is what he would want.

There was talk of a PEG- feeding tube into the stomach. The Dr. who does this procedure said that because his platelets were down, she did not recommend it at this time. This can change, and may have to in order to transport to a rehab hospital or facility.

I do not want him to see his current oncologist again. He was not even willing to look into rehab places closer to home for me. Told me to ask the local radiologist. Do you think that I have enough to do?...and my kids....???the home, work, the economy, endless paperwork.... I would think that after a couple of years of being his doctor, that he could ask one of the gals at the front desk to do this- even if just to humor me- as he is not very supportive in general. Another doctor/personal friend of 20 years himself offered on his own, but we are putting that on hold to try and get him into the best rehab place here , where this friend is affiliated.

Prayers for the transitioning and insurance to go smoothly, transportation to be paid, etc, would be greatly appreciated. Things , as of this evening, seemed to have 'smoothened out' quite a bit, with tunes changing.I hope that this trend continues. There are so many amazing people here, who are quite compassionate and helpful. I am amazed at how unbelievable most of the staff have been. And I am extremely thankful for this.

And, the support, love , prayers, aid from friends , co-workers, family , is simply mind boggling.
My husband is being thought about, prayed for, visualized... by hundreds and hundreds of people. How lucky is anyone to have so many people in their lives at all- let alone so many to cheer him and us on???

There have emerged some amazing individuals throughout all of this . More on these fabulous people later...And of course support from close family and friends to us all. Jean, I know that you understand all of this. The wheels are turning constantly. I am so very, truly humbled. Is this not what life is about? I really like his neurologist. A lot. A sane, informative, helpful, hopeful, concise w/information doctor. I have liked him from the beginning in ER. If I didn't have him, I don't know if I would be dealing with this all so well.

Good nite, and God Bless. xo Just, Wow.