Stuck

Hi everyone, sorry I haven't posted in a while.  This has all become quite exhausting.  Pam was doing fantastic on Tuesday, sitting up in her bed, talking more, things were looking good.  Then on Wed. she has some sort of skin reaction that caused a really hard day.  She basically scratched and itched herself into complete exhaustion.  I think every doctor at DHMC came and looked at her.  They took a skin biopsy, stopped all meds, tried new meds, tried some creams, nothing.  It was incredibly hard to watch her go through this.  She was in alot of discomfort and it was making her breathing harder and harder.  By 6pm they had to put the breathing tube back in due to exhaustion.  Her x-rays did not look any better than a few days before and we appeared stuck.  Lungs not getting better.

Once they had her sedated and intubated on Wed. night they pretty much kicked me out and sent me home to be with boys as there was nothing I could do at hospital.  So I went home on Wed. night.  The boys were vey happy to see me, they are asking when mom is coming home.  I sat them down and told them that mom has caught a cold and will need to be in the hospital for a while longer to make sure she doesn't get sick right off when she comes home.  They are very resilient and strong - like their mother.

On Thursday they did another CT scan and a bronchial scope procedure with a camera and water to get some fluid from deep in her lungs to biopsy.  Everything came back negative.  We seem to have them all stumped on this.  They are thinking more and more that she does not have an infection at this point.  They also need more information.  So on Friday they performed a lung biopsy (surgical procedure where they actually go in and take out some small pieces of each lung to biopsy).  This was not what they wanted to do as it can have its own complications (many which you don't really want to know) but they have to try and find out how to treat her before she starts to get worse and they run out of options.

Lung biopsy went fine and she is continuing to rest under sedation in her room.  Spoke with one of the doctors yesterday and he said biopy showed no infection but lung damage.  The only diagnosis they seem to be able to pin on this is Idiopathic something, something: which is medical terminology for "we don't really know, but here is our best guess treatment".  Result is that they have started her on a high dose of steroids (brings other possible problems) in an effort to help try and clear up lungs.  They do know that because of the damage they see, that this will take quite some time to recover from.  Today is Sunday, she has been in ICU for 15 days, the hospital for 25.  We are really hoping for these steroids to kick in and relieve some of the lung issues.  They are hoping to try and get her off the vent either today or tomorrow.

The boys are in Bethel with all their cousins playing in the pond and mountain biking.  The best thing for them right know - distraction!  Hope we can give some good news in the next couple of day.
Troy

Some good news!

Pam had her breathing tube removed this morning around 11:30am.  She is doing great right now, breathing is strong and relaxed.  All other vitals continue to be strong.  They are gong to keep her in Intensive Care until tomorrow at least just to be sure her lungs don't fill again and potentially cause need for tube again.  She still has a line in each lung (she let them know she felt them when her sedation wore off, they go thru rib cage and musculature to lung, they said it is uncomfortable).  If fluid levels continue to drop then she might get them out tomorrow.  The next 24 - 48 hours will tell us quite a bit.  They still think she has some sort of infection in lungs, hoping it is on the decline and won't resurface.

Assuming we are headed in the right direction it is good for you all to know that she will be extremely weak and tired coming out of this.  Dr. Palmeiri said that it usually takes 1 week to recover for every 1 day in ICU.  She has been in ICU for 10 days!  She has not gotten out of bed once in 10 days.  This on top of the bone marrow transplant will make for some slow recovery time for Pam.

Will let you know more tomorrow on how she is progressing.
Troy

Still in ICU - Stable

Wow, it has been over a week since Pam was moved to ICU.  It feels to me like time has actually stopped so I didn't even realize that much time has passed.  They had to put the breathing tube (respirator) back in yesterday morning because Pam was working harder and harder to breath with diminishing results.  They then took her for a CT scan to get a better look at her lungs.  The CT showed significant fluid around the lungs and signs of infection in the lungs.  They decided to go ahead and drain the fluid from around the lungs as they feel this was contributing to Pam's breathing difficulties. After explaining the risks of this (possible infection anytime they puncture the body) and getting my signature to approve they did this procedure.  They pulled 1 liter from her left lung and .5 liter from her right lung.  Those tubes are still in place and will stay until they have all the breathing/lung issues resolved to their liking.  They are continuing to try to drain fluids off her body.  She was at one point 40lbs above normal from all the fluids.  Images of Macy's parade balloons were starting to enter my head.

So....even though she is still in ICU, she is much stronger than she was a week ago at this time.  Her heart, blood pressure, and liver/kidneys are all strong right now (none of which was true 7 days ago).  The issue now is to continue to get the fluids off the body, and to watch the lungs and look for healing and improved function.  I suspect she will be in ICU for a few more days even if everything goes perfectly.

When she was awake on Friday she was able to tell me that I had bad breath and to get away from her.  I am taking that as a good sign.   I'll take any I can get these days.
Hopefully the next post will bring some news of moving forward.
Troy

A setback

They had to put the breathing tube back in this morning. Pam was doing great initially and then her breathing just continued to get more and more labored overnight. They have pulled quite a bit of the fluids off her and they don't think that is the problem. They think she has picked up some more pneumonia in the right lung. The left lung is actually getting a bit better. That is all I know right now.

A Big Step Forward

Pam had her respirator removed today at 11:45am! She is doing great and breathing nicely on her own (with some oxygen in the nose). The next 12 hours will be important as that will tell us if she will sustain this or take a few setbacks. She is EXHAUSTED and can not really talk. We are checking in with her periodically and just letting her sleep as much as possible.
The last week has been a blur but let me try to fill you in:

• Pam started having fevers last week. She also had a full body rash and got a skin biopsy and stitch in her back. This continued and on Thurs. evening she started to have trouble breathing. They started some oxygen under the nose.
• She didn't get much sleep and was very tired the next day. Still fevering. Breathing continued to get a little worse. Fri. afternoon they put her on more O2 with vapor added.
• Friday evening she really started to struggle and they put the light face mask on her. Didn't really help.
• ICU came and got her and brought her upstairs on Friday evening around 11:30. They put the pressure face mask on her. This seemed to settle things a bit. I went to try and get some sleep in the recliner in waiting room.
• Phone rang at 5:30am asking me to come back to ICU. They needed to intubate her (put breathing tube down throat). She was exhausted from trying to breath. X-rays now showed fluid build up in/around lungs.
• Blood pressure was low, heart rate high, rhythm off, still fevering. They let me know that she was in very critical condition. They were trying to stabilize the situation.
• Saturday was a day to dial in the drugs and try to get things under control. Pam seemed to get leveled off, not getting any worse, but not getting any better.
• Got a call late Saturday from sister in law to tell me they were at hospital in Middlebury with Tucker to x-ray a possible broken clavicle from lacrosse game. Turned out negative.
• Sunday morning met with docs after rounds. Pam had not really improved much and blood pressure was still a battle. They wanted me to really understand how serious her condition was. It was mostly wait and see how she responded.
  
• I had a minor emotional breakdown.
• They had so much fluid in her to raise BP that she was 20lbs overweight. This was now a concern as well. They tried to put in new port line so they could take hers out to check for infection. They were unsuccessful due to small and deep veins. Took fluid from lungs to check for infection.
• My parents came to visit and my dad got ill at end of day. Ended up in the ER the next morning with an obstructed bowel. Taken care of and released two days later.
  
• Monday she seemed to dig in a bit and we saw temp lower and heart rhythm correct itself on own. They brought her downstairs to get new temp line put in. They removed hers.
  
• Tuesday no temperature, they were able to lower oxygen levels a bit. Blood pressure got under control. A little bit more improvement.
• Wed. a big step forward. Lowered O2 support more, blood pressure and heart normal with out help of drugs. Urine output started to pick up as well.
• If she could hold all these in place for 24 hours they would remove breathing tube. This was great to hear as every time Pam would wake up she was really agitated and wanted it out!! Very hard for us to watch.
• Thursday morning, today, one week later, tube is out and she is doing fine right now.
• Next 12 hours will be very important for her. She is still in ICU. Was able to say "I love you", and now getting some rest.
• Hopefully she will continue this trend and might move back down to HSCU late tomorrow or Saturday.
• She truly is strong. When doctors told her this morning that they would get tube out in a couple of hours if she could just hold on, she gave them a wink and a thumbs up.

Troy

Back online

Hi everyone, we had a minor technical problem with the blog but it is now back up.
Quick update:
Pam is doing better, still in ICU on a breathing tube and we have a ways to go, but she is headed in the right direction as of right now. Things can change very quickly we are learning.
Thanks for all your thoughts and prayers, we need them right now.
I will update again tomorrow.
Troy

Some bad news

Hi everyone, I am going to keep this brief as my mind and energy are elsewhere. Basically to sum things up Pam has pneumonia. Her fevers have been coming and going (mostly coming). But the bigger issue is her breathing. She developed difficulty with it on Thurs. evening and it got progressively worse. She was admitted into ICU late last night (Fri), and given oxygen with a mask, this initially worked pretty well and things settled down. Then later in the night (early morning) she started to really labor again. They decided to intubate her and had it in by 6:30 this morning. So she is now resting nicely in a sedated state with a respirator and feeding tube. This is designed to allow her to rest, her body to heal, and let the antibiotics and her own body get a chance to start working on the pneumonia.
Troy

Feeling Crappy!

Pam has not been feeling very well for the last few days. Temp of 102-103, chills, really tired. After the cells went in everything was going great. Then on Monday night the fever came on and they started running tests: chest x-rays, blood cultures, urine samples: so far nothing coming up to pinpoint what is causing the fever. It does seem to be heading on a downward trend at least. Closer to 100 than 103 now. They did a sinus swab a few times (not fun) and then the ENT guy came in and slid a camera up in the sinuses to look around (less fun). They only saw nice pink tissue, so that was good.
From Tues to today the temp stayed around 102.5-103, yesterday Pam did not turn on a light or open a curtain, she slept the entire day. She has also broken out in a rash the they are going to biopsy to see if it is a reaction to donor cells or from one of the many meds.
The fever at this stage is concerning to the docs so they are running every test and taking every precaution they need to to see if they can find out what it is.
Pam did get a chance to have some family visitors over the weekend before this all hit. Her brother, parents, and sisters came to visit. Then on Mothers day I came down with the boys and we all had pizza together. Pam was very excited to get her Mothers Day gift: a hardcover book that contains pictures of the boys from over the years (yeah Apple!).
Hopefully they can get a grip on this fever and get Pam back to feeling better. As "nurse Kate" put it, "we aren't used to seeing Pam like this, this isn't our regular Pam!"
Hoping for a better day tomorrow.
Troy

Cells are in

We are at DHMC and the donor cells were infused at 3:45pm. I would like to say that it has been event free leading up to this, but alas no. It seems like Pam has been the star of a reality TV show that tries to see how much one person can handle before they break!

Well of course there has been the broken leg (spiral fracture)to contend with. Pam is semi famous at the ortho office. A Dr. came in the other day and said "Your the one. I heard about you and how Dr. Kristiansen wedged your bone in place with tongue depressors!" No driving, walking, use of hands due to crutches. That has been taxing to say the least. Knowing you are going to be laid up for several weeks from the transplant and then having this happen several weeks before: not good. Pam has had to rely on everyone else to do everything for her for the most part and as you know, that is not her style.

So the leg is healing nicely, she can start to gradually put some weight on it, and in 6 weeks it should be fully healed. So what happens next? One of the boys brings home lice..... again, not good. Sam, Tucker and Pam got it. After washing everyone's hair in chemicals, washing every item in the house, vacuuming every piece of furniture, and waiting; it resurfaced again a few days later. Mind you Pam did most of that cleaning and work on crutches! So when it came back the three of them covered their hair in vegetable oil and saran wrap for 4 hours, we then had to wash and comb out and go through every single hair to remove any eggs. Several hours. Pam had a breakdown on this day, lots of tears and why me. Again, not good.

We took the boys out of school last Monday and went to Montreal to the Biodome. I was on vacation and we wanted to treat them to a surprise fun day before Pam headed in for the treatment. This was a fun time. We went into the Olympic Pool area after and saw international Olympic divers practicing for a big meet. This, was good.

We started Chemo on Sat. to start lowering her immune system. That went well. Down and back for 3 days, she was able to stay at home. Lots of driving, but what the hell, the oil companies need the $$$. Seriously, it was great for her and I to not have to stay down in Hanover at a hotel this time. We were able to spend 3 more days with the boys.

Tuesday was supposed to be Pam's day off, but this turned out to be the only day they could put in her central line, so we had to come down to DHMC again, no day off to prepare, pack, mentally prep. Again, not good.

When they were putting in the central line on Tuesday, they accidentally poked something or opened something (not really sure), but they were concerned of infection so they decided to give her an antiobiotic. This would take an extra hour or two. About 1/2 hour into the IV bag, she started to have a reaction (head itching, face beet red). So they had to slow it way down and give her Benadryl. This caused her to be pretty sleepy and out of it, and meant we didn't get out of DHMC until 3pm on our "day off". Again, not good.

They did however push back her radiation treatment to 11am so we could be home to get the boys off to school and then come down (originally we were going to have to leave at 6am to get to DHMC for 8am treatment). This made us happy as Pam was able to see boys off to school today (although a rough morning with some sad kids). We arrived and checked in at HISCU (special unit where bone marrow transplant patients stay). They hooked Pam to her bag of fluids and sent her down to radiation. We were sent in to the prep area and waited a bit. Dr. Zaki came out and told us he had been instructed by Dr. Meehan to not treat Pam yet as there seemed to be a problem with the donor cells. Again, not good.

After a 2 hour wait we were told everything was a go! It seems the machine that checks the viability of the cells was not working properly the first time they checked them and read them as less than 1% viable, turns out they were 98.5% viable. Good.

So at 3:45pm on the 5th of May, 2010 - the donor cells are in. One hour later, Pam threw up. Here we go! Pam is sleeping beside me now. The next few weeks are really just a time to recover from the radiation, chemo, and the wear and tear on the body from the cells trying to engraft. Once her white cell counts get high enough they will send her home (probably 17-24 days).

Pray for those tiny little cells to go out and kill some cancer!
Troy