Home Again...

Just as I felt I was gaining strength and health back from my long MGH stay, I woke up early on the Friday of my 50th b-day, feeling like I was going to die of chills and delirium......Monika's previous post describes the day nicely...

Birthdays have never meant very much to me, and this year all I wanted was to have a small meal with the handful of friends who saw me everyday at MGH and got me through the ordeal with their love and daily presence, so I could thank them for getting me to #50. So I'm glad I was still able to do it...

The rest of the 4 days were spent trying to determine specifically what type of infection I had and to see if there are any issues with the stents or surgical sites from the MGH work. Happily (so far) everything seems fine in the scans with all my previous issues so we are hoping that this is just a separate infection that will not have ramifications in an ongoing way.

I will be receiving 10 days of IV antibiotics at home with the help of a visiting home nurse service. They will train me how to administer the antibiotic and be on call to help with any issues that arise...

Even in the comfort of a single room, and with me having only a few medical things done to me each day; I realized how much I needed to be out of hospitals right now. I was starting to become anxious that I'd have to spend another couple of days until all test results were in, or worse, that they would send me back to MGH for observation. I need a chance to build my identity away from hospitals and sickness, and my being back in the hospital set me off. My stress was considerable, but luckily my local GP doctor came everyday to see me and he understood that I would heal better at home, so he made it happen. I still may end back at MGH with bigger issues, as we chose to go down a perilous road with lots of risks, but for now at least, it's back to quiet methodical healing and rebuilding in the sanctuary of my garden and home, hoping that this infection is unrelated to all my other issues and that I am on track to become healed...

Time will tell.

50th Birthday....and complications

Yesterday was David's 50th Birthday! The preceding week he had been steadily improving, getting healthier and stronger each day, as he puttered around the garden, buying herbs at the nursery, planting tomatoes, walking with me and the dog. Then, early morning of his birthday, he woke up feeling sick, had cold shivers, ran a hot bath, but could not get warm no matter how hot the water was. He puked.... I took his heart rate and temperature, and both were running very high. I called his MGH team, and they told me to take him to our local hospital, so that they could properly monitor him. We spent most of yesterday in the emergency room, and around 5 pm he finally got admitted. Meanwhile we had invited a few close friends for dinner. In the end, I held the dinner party without David there, and then we all went to the hospital with cake, sang for him, and hung out. While this was certainly not how we had planned to spend his birthday, it was actually a very beautiful thing, and luckily David had a single room, so we didn't disturb anyone.
After multiple tests and scans, it is clear that David has an infection. Where it is, we may find out tomorrow after his CT scans have been read. Until then David is resting nicely in the hospital and getting the medicines he needs, which is good, because it was a little scary to see him so sick and feverish yesterday. He does feel and look much healthier today.

Peace and love,
Monika

Home...

Well, I made it home yesterday after what can only be called a very difficult 17 days at MGH. I come home with a fair amount of healing left to do, and a lot of things to balance as I transition back into my life.

My care at MGH was extra ordinary, from the team of doctors that managed my VERY complicated case to the nursing staff which was truly amazing. I dodged a lot of bullets during this stay and am really lucky and grateful to still be around. The level of knowledge, support and caring I received was like nothing I have ever encountered at a hospital (and I am used to getting very good care). The nurses and aids helped me through some pretty dark times...and I am most grateful.

After I was stable and able to be free of machines and IV's, it became clear to me that I needed to get home to really heal. Time is suspended in the hospital...day and night blur as you get checked 24/7, tested and attended to as buzzers go off, people moan, and staff rush around... you never really sleep and are always out of balance. At times, I needed LOTS of care and then lots of vigilance to make sure that I had stopped bleeding and it was safe for me to go back on blood thinners and prepare to go home.... So now that I am home, I can bask in the peace of my garden and the presence of my beautiful family. I already feel stronger.

The coming weeks will bring some challenges that I have to work through, but at least for now, I am in a great place, and hope to get my body back on track...

Thank you to all my friends and family by my side that saw me through this and for all of you who have kept me your thoughts...

Turning a corner...

Today David looked and felt well. His blood crits were holding steady, and the doctors think his inner bleeding has stopped. For some periods during the day he can now get unhooked from his IV lines, and has taken a few walks outside in the beautiful spring weather. He says it revives him, and that he can feel the healing influence of the sun on his body. This evening he looked very stylish in his hospital gown, as he and I went for a stroll at the edge of Beacon Hill. We paused in front of the Liberty hotel, admiring the soft light of late afternoon, (ignoring the looks from the posh crowd in the open air hotel bar).

While David now seems to be doing much better, it is important to note that his health issues are complex and many. There is no magic fix to his present situation, and whether or not he will flourish will depend on many factors. While we are relieved that things are looking good right now, we are in no way in the clear. But we welcome every success along this arduous walk towards healing.

Peace and love,

Monika

Nine lives...

One day David is doing great! The next day he crashes and is almost sent to the ICU. Yesterday was a day of worry and calamity, as David started passing massive amounts of blood. He got bag after bag of blood put into his system through his IVs, yet his blood values continued to indicate bleeding. He had an ultrasound and an endoscopy. The ultra-sound showed that the stents were working properly. The endoscopy was meant to establish where the bleeding came from, and since he is on blood thinners, and since he was told months ago that the ulcer would never heal, it was assumed that he now had a bleeding ulcer. Surprise, surprise, the ulcer was completely gone! That was good news. Bad news was that now they had no idea where he was bleeding from. As I left the hospital at 8.30 pm it was with a worried mind and heavy heart.

Fast forward to today, when he is looking great and the doctors are less worried about him. It appears the bleeding may be slowing or stopping, and he can now eat proper food, walk around, see his friends, and best of all; the blood values are getting better and better! So now he is not getting any more blood, and is being carefully watched and measured until all the answers are found. Very scary for us.

Still in the hospital....

David had a scary setback yesterday, when the doctors discovered some bleeding around his liver. This, most likely, is fallout from his Monday procedure. The trouble is that because he is on blood thinners, any bleed could be life theatening, and if they take him off the thinners, hecould form clots in the stent. They put him on rest, gave him 3 units of blood, then watched and treated him all day yesterday, and today things seem stable again. It means, however, that he will remain in the hospital for a while longer, perhaps through the weekend. We are both weary and bone-tired, but cautiously optimistic that he is now on the mend. If friends or relatives plan to visit him around lunch or dinner times, the word is that he is heartily tired of hospital food, and wouldn't mind an occasional tasty meal in its stead. And as always, we welcome your kind thoughts and prayers for a speedy recovery.

Peace and love,

Monika

YES!

The picture above is a scan of the small totem I found on the sidewalk today when Deb and I walked back from lunch, while waiting for David's procedure to take place. After a long day in the hospital waiting room, we found out that the procedure went well. We are SO relieved and happy! When the doctor came out to tell us the news he said that David is "a very brave man". I'm not sure, exactly, what he meant by that, (where there things he didn't tell us about?), but the procedure went well, and that is all that matters. The doctors will keep watch over him tomorrow, and perhaps the next day. We are hoping for continued healing and success!

To all a good night!

Monika