Dean January Update

Hello people who love Dean-

Here is a very long (and long overdue) update- it has two “parts” to it. The first was written on January 5. The second part I wrote on Tuesday, January 12, 2010.

I know you all care so much about Dean, and that love and healing energy is so important to him, especially right now. Please keep sending it his way.

1. Part one, written 1/5/10:

Dean had to be rushed to the ER yesterday, and was admitted back into the U of M hospital last night. He is stable now, and feeling a LOT better… in fact he is sleeping soundly right now, I am sitting next to him.

To back up a little- he had been doing pretty well. Feeling overall “ok”, with enough energy to go for two, sometimes 3, walks each day, eating three meals a day, playing a lot of guitar, watching movies at home… all good stuff. Hard stuff was feeling often tired, often “overall yucky,” having a rash all over his body (which has been slowly going down), having occasional bouts of diarrhea or vomiting. Basically the long slow haul of healing. Also the very lonely (at times) journey of healing… I think one of the hardest parts of this for Dean has been the isolation- partially imposed by needing to be so careful about infection, partially imposed by lack of energy, and partially imposed by circumstance (not being an active part of his social or professional circles right now).

Anyway- yesterday afternoon, after a really nice morning, Dean was coming home from a walk, and started to feel “really bad.” He was home alone at the time, and called 911.

I met him at the ER. Because Dean had his central line taken out a few weeks ago, they had to put two IV’s in him. That was very painful. They started giving him fluids right away, and did a lot of bloodwork. Dean’s creatinine levels were very high, as were his lactic acid levels. Apparently his pH numbers were really off-kilter as well. They now think all of this was due to extreme dehydration and hyperventilation.

He has been getting non-stop iv fluids since arriving in the ER. Dean has had a chest x-ray and a CT scan. All of that looks fine- nothing to report (which is great). They are testing for multiple infectious “things” (sorry, not specific).

What the medical consensus seems to be right now if “some kind of infection”- the rapid onset and severity of onset tend to make them look more towards an infection and less towards GVHD. Dean is on several antibiotics, and if they can figure out exactly what is going on, they will get more specific with the antibiotics.

Dean has also lost a lot of weight, so depending on how things go with eating, he may need to start TPN again. Since he no longer has a central line, this will mean giving him a “pic” line in his arm. Of course, one of the first things that brings up for him and for me is – playing the guitar (is it possible with a pic line?).

There is a great attending physician taking care of Dean right now, and she is here on the floor until Tuesday of next week. She told Dean today “you’ll be home way before then.” So- that is what I am hoping for, too. We are basically in “wait and see” mode, and Dean is in “rest and recovery” mode (sleeping and sleeping) after the trauma of yesterday. He is drinking clear fluids and eating ice chips.

Ruth is here- she arrived last night, and came directly from the airport to the ER. I am so glad she is here. She has been driving back and forth… she drove all the way to our house from the hospital at midnight to get my contact stuff, and then brought it back here so that I could stay overnight with Dean. My mom will be arriving on Sunday- and again, I am so glad. She will be here for a two weeks, along with my Dad.

I do think Dean is ok, and that this is a “blip.” It just happens to be kind of a terrible blip.

and i certainly love you all. Megan

2. Part 2 (written January 12, 2010)

Dean got to come home from the hospital Saturday afternoon, was home all day Sunday, and had to be readmitted to the hospital on Monday (yesterday). It was a day of difficult decisions… Should Dean be readmitted, should he start on TPN, should he have a PIC line placed… Fortunately Dean, my mom, and I had a long talk on Monday morning about these very questions, so we felt prepared when the BMT folks began asking.

It felt important to say “yes” to all of these questions. It just didn’t feel safe, to Dean or to me, for him to keep trying to survive at home. He hasn’t been able to eat, and he is feeling awful.

It is unclear how long Dean will be in the hospital; They are looking for evidence of GVHD, and in the meantime, they are giving him fluids and TPN (iv nutrition). Dean does have a PIC line (placed yesterday- the placement went very well), and it is not certain if he will be able to play the guitar while this line is in. That was a very hard conversation. But I think both of us feel clear that it is most important for Dean to be able to get some nutrition in him (and he needs to have a PIC line for TPN to be an option)… and eventually that line will come out.

He had several “scopes” today, looking for evidence of GVHD. I think everything went smoothly and well.

And that is where things stand as of now. Dean is safe and getting good care, and we are taking things one step at a time. We are all very tired.

Thank you for all the love, emails, phone messages, cards, and waves of healing energy you are sending Dean’s way. The main thing I am asking right now is to please send regular emails to Dean – deanmagraw (at) gmail.com – letting him know that he is loved and supported.  I know, and he knows, that people are thinking of him… but sometimes it is nice to have a written reminder.

Love Megan