Thursday, September 24, 2009

Adenovirus and hospital stay - updated

Will was admitted on Tuesday from the CF/transplant clinic. His oxygen saturation had gone down hill. Chest CT showed a new infiltrate in the upper left lung. It was a rough two days. Wednesday Will had a bronchoscopy and after he started running a fever (which is a typical side effect), but Will's fever just kept going up, complete with chills and shaking. I was in Texas for work Monday through Wednesday and came straight to the hospital from the airport Wednesday night, just in time to see Will's fever hit 109 degrees and his saturation crash. They couldn't get him out of the low 80s on 100% high-flow oxygen and his heart rate was 144. There was a lot of activity, lots of doctors and the stat nurse came running. Get the re-breather, no, now the high-flow. Ice packs. Rapid stripping and running the fan. Arterial draw for blood gas testing. Etc.

In the moment it's pretty easy to stay calm and just try to comfort Will, because that's what is needed, but on reflection, it was pretty scary. Luckily, his fever broke and they started giving him lots and lots of IV fluids which helped a lot. By midnight, he was down to 40% on the oxygen high-flow machine and his fever was normal. He had another (much lower) fever this morning and has been fever free since then. He's off the high-flow and back on oxygen by nasal cannula, and down to 4L, which is keeping him saturated in the mid-90s.

Today we learned a little about what might be causing a lot of this: Adenovirus. Like most viruses that Will gets, this is an "oh, never mind" type thing is most of the population, but can be very serious in people with suppressed immune systems. He also has Rhinovirus and his typical bacterial infections (psudamonous and strep). He's being treated with antibiotics for the bacteria and anti-fungals, just in case. There isn't any great treatment for the virus. He'll have more testing to see if it's an active infection and, if so, how serious it is. If the infection seams to be still active and still serious, they can investigate some treatments, and can give him IgG if his antibodies are low. Otherwise, they watch it, treat the bacteria, and hope it clears itself.

They've been worried about Will's blood pressure today, it is low, which can be an indicator of worsening infection. But, it seems to be going up with more fluids, so that's good. There also has been a lot of talk about a lymphoma recurrence -- which certainly is something serious to consider. But, as of today, the oncology doctors think it should be on the back burner: they don't have any evidence of recurrence and Will doesn't have the same symptoms (exactly) as he has with his past lymphomas. Last night and this morning there was a lot of noise and speculation about a move to the ICU, but that seems to have abated too for now and Will is, by all accounts, feeling better: lower oxygen requirement, blood pressure back in the normal range, and no fever.

Will's regular pulmonary doctor is attending in the ICU this month and stopped by to say hello, which was really nice.

Second hospital sleepover in a row tonight, and 4th night away from home and Liam. If it's a quiet night and they've got a clear treatment plan tomorrow, I'll go home in the early afternoon. Hoping that's the case. My sister is visiting and I'd really like to see her before she has to go home again on Sunday!

PS -- I forgot to write earlier. Will has been great through all of this. Steady. Not freaking out. Nice to the nurses and doctors. Cooperative. Eating. Today he even did the flutter value thing to promote coughing and coughed up a bunch of junk from his lungs.


IVF 40+ said...

I am amazed at the depth and breadth of your kindness. In the middle of all that you leave supportive messages for me.
Elizabeth, I wish Will the fastest recovery and a speedy return home. I shall be thinking and hoping for you both everyday.

mekate said...

Oh Elizabeth,
I am so sorry for your stress and Will's ongoing medical battles. I know they are always there, sometime quiet, sometimes roaring-- I look forward for all of you to a return to the quiet fight.

And thank you so much for your sweet words to me. Like EB you blow me away with your kindness.

Wishing for a speedy recovery and return to your normal.


Tara said...

I didn't realize you had a blog until recently. I'm sorry Will is having such a rough time. I'll have to take some time and read your old entries. My thoughts are with you this week as Will gets over these viruses.

I emailed with Will last summer when one of my friends was having vestibular issues. He was so kind and gracious to give me such a detailed reply to pass on to my friend. I think it really helped her. Another CF friend of mine was just diagnosed with vestibular damage as well. I forwarded the emails Will had so thoughtfully prepared last summer. Just thought you should know he is helping people he doesn't even know. I'm so thankful to have "met" you guys online.

Sacramento, CA