Finally Back Home

Things were running behind today and then I had to feed everyone here so this is coming up later than I would like.

Sandi's cumidin remains too high but has come down to 3.1. We are to continue avoiding all greens because of the parasite risk reported in the media as well as the fact they don't want her to do anything diet wise that could cause it to swing one way or the other. Later this week they want her to take some of the medicine so they can check her again on Friday.

Oxygen wise she seems to be doing a little better. Because of that they are going to start slowly tapering the steroids off and see what happens.

All other bloodwork shows some improvement.

Pathology results are back on the lung samples and there are definitely no signs of any cancer.  The samples have been evaluated by a couple of different parties and they are absolutely sure there is no cancer. The cultures have still not grown anything and should have done so if she had a virus or bacterial infection. this seems to confirm the diagnosis of pneumonitis. Based on what they are seeing at this point, they now believe it is at least somewhat reversible. Whether or not she can ever  become free of the oxygen assistance in some form will take longer to determine, but they think the pneumonitis has started to reverse.

So, all in all, we got the best possible news we could have gotten at this point.

I'm exhausted and flopping on the floor to rest. E-mails will have to wait till a later time as I am hurting really bad and very tired.

A Sandi Update

I wasn't in the best of shape yesterday afternoon or evening so I didn't update as to how Sandi is doing these days. Breathing remains about the same. The new, bigger tanks run slightly more than two hours at her flow rate so that is a little bit better for going back and forth down to the doctor at Medical City Hospital Dallas. With it taking about 45 minutes one way, the time adds up. Because I can't move them Scott is now going with us each time to move the tanks as we have to take spares with us. I am not sure how we shall make this work once Scott is back in classes at UTD at the end of the month, but the obvious solution is to start taking Karl with us. He won't be thrilled, but the choices we have on this, like nearly everything else, are very limited.


We went down yesterday morning as scheduled to go get her cumindin level checked. It was high at 5.1. That means it climbed from 2.7 to 5.1 in four days. They want her to range between 2 and 3. Thanks to the scare with the produce she has not been eating salads, broccoli or anything that could have caused this to happen. With it being so high she is off those pills through the weekend and they will reevaluate based on the blood test Monday. Sandi does the full blood workup then and also has a doctor appointment.


The picture below is from this morning. They have finished, at least for now, working on our porch to fix the leak and drainage problem. So, our stuff is moved back where it belongs. We discovered today that her air umbilical cord can reach from the machine plugged inside to the rocker out on the porch. So, we sat out there until the sun cleared the buildings and it got too hot.

As you can see if you look closely, much to her relief, her hair has started coming back. I have never cared one way or another, but to her this is a huge deal and I get that. She had about given up hope that it would come back this time. I suspect the powerful steroids she is on now have caused this to start, but I can't prove it.

Thanks to a couple of last minute donations we have just barely made our rent--even with the price increase due to the new lease. Moving was not an option and so we had to take the increase offered back a couple of months ago. I really didn't think we would make it this time, but we did.

And we thank you. The only reason we are still here is because of you that have chosen to help us. We are very grateful and appreciative.

Doctor Day Tomorrow

Doctor day tomorrow for Sandi and proably not a moment too soon. After the scare we had last night, I also picked up an oxygen sensor at Wal-Mart while I was getting her prescription refills today. If the thing is accurate the news is bad. Her numbers have been really low off air inlcuding a 58 mid afternoon when she took the oxygen off to use the bathroom. Even with the air on her she was sitting in the low 80s so we turned her back up to 5 liters per minute flow rate. She had been down to 3 liters per minute in the hospital, but they said to bump it back if she had issues so we went to 4 and then with little change back up to 5. Getting back to 5 has helped a bit and that is the limit of the machine. We can't go any higher and hopefully won't have a need too.


This evening she is better than she was breathing wise and has her feet propped up to hopefully reduce her swelling in her feet and lower legs. They are pretty bad tonight after she sat up all day with her feet on the floor. The swollen feet thing has happened before so hopefully it is just the same thing once again and not a sign of a new issue.


So, that is where we are at. The appointment is early which means we have rush hour traffic to deal with too. In the morning the boys are going to have to load the car with the oxygen cylinders as I can't lift or carry them. They also have to put her cylinder carrier in there too. Then there is my walker. So, tomorrow as we make our way into the hospital, we shall be quite the striking sight.....

Scary Evening

They sent Sandi home with just one small bottle of oxygen today. Somebody at the hospital was supposed to do something, somebody else was supposed to do something,  and yada, yada, yada nothing got done. The bottom line was that nobody ever delivered the home setup stuff for Sandi today like was supposed to happen. After the procedure she had this morning she is having a very hard time breathing tonight. It has gotten a little worse each hour as they said it might and by 8:30 she started having major coughing fits. So, we had to make an emergency call around nine tonight to get some oxygen delivered.

The folks responsible for the oxygen supplies responded very quickly and she now has the equipment.

This thing above is the oxygen concentrator machine. Plugs into the wall sockets and processes the normal air in some way to give her continuous high level oxygen.

These are some of the portable tanks she will use in a carrier for doctor visits, power failures,etc.

And this is the patient herself breathing and feeling a little bit better about a half an hour after the tech left.

A little while after this picture was taken by Karl (he took the others as well by cellphone) we got her moved upstairs and into the bed. I have no idea how heavy the machine is, but I can't move it up and down the stairs. Fortunately, the boys can so that won't be the problem it would be if the two of us lived alone.

She is now in bed and things seem to be a bit better. At this point, I don't think we are going to have to get her back to the hospital tonight like I really thought we were just a little while ago. This was very scary tonight, but I think the worst is past.