another pneumonia/infection

Today just a bunch of tests. They did an  EKG this morning. Then a CT scan. Then a  bronchoscopy after that. The transplant surgeon wants to double check there is nothing medically impeding her recovery in breathing and being off the ventilator. 

From these tests they believe she maybe at the start getting another  pneumonia/infection. So they will start her proactively on antibiotics again. Sent cultures off for testing. They also did a lung biopsy today just to make sure they don't miss anything. She is about due for that anyway(they do at 30 days after transplant to check for any sort of rejection). Should know results tomorrow After all testing she is doing fine and in good spirits. 

too tired

Just a simple day of physical therapy and rest. She seems a little stronger in physical therapy. No change on ventilator today she seemed too tired to try lower settings or to try test go without. Tomorrow is another day.

move closer to that goal

Been quiet and good day today.  Jane did physical therapy and rested in between. Ventilator is at 40 percent support which Jane is doing well with.  

 

Let me take this opportunity to explain how the ventilator is helping Jane to breathe. It is in a mode called pressure support. In this mode Jane  does all the breathing on her own but every time she takes a breath the ventilator provides positive pressure so she gets more air to helps fill those new lungs.  Her current setting is very close to having no support at all. Each day they turn off the ventilator for a few minutes so Jane can completely breathe on her own. This is an exercise so each time she will stronger to breathe on her own. Very much like physical therapy is exercising her so she will walk on her own. 

 

Soon she will be walking and breathing on her own. That's the plan for this week...to .  Thank you for all the prayers!

white blood cell count is back to normal

Jane is doing ok this morning. She had a bit of nausea again this time right when she started physical therapy. They gave her some extra nausea medicine which knocked her out to sleeping. Slept deep for the next couple of hours. But woke up energized and was able to do her second set of physical therapy just fine.   Her ventilator support is down to 40 percent. Also today was the first day since transplant that her white blood cell count is back to normal this means no infections. Doctors now want to really concentrate on getting her up and walking which will boost her breathing abilities too.  Thanks for all your prayers!

back in the saddle again

Jane was feeling much better this morning and is back in the saddle again with physical therapy and back on track to gaining more strength and mobility. Having no nausea today was a big help. They decided not to try a no ventilator test today. But had her on 40 percent support  for a while she did fine. 

Since it was a slow Jane news day today (uneventful is good) I can tell you that her gangster ICU next room neighbor has been discharged so we no longer have Chicago police presence here. He was under 24 hour guard and has been here for about a week.

nothing is normal when it comes to lung transplants

This morning Jane was feeling very nauseous. So was not able to do too much of her morning physical therapy. She has been up since 2am feeling this way. Doctors believe it has to do with all her anti rejection medications and are adjusting. Will also start to give schedule doses on anti nausea medicine. 

From being up most of the night with nausea Jane continued to be extremely tired as the day went on. Ventilator was down to 40 percent today lowest it has been. However she started having trouble breathing because she was so tired. They turned up the ventilator to give her a rest. As soon as they did  she fell fast deep asleep. Still sleeping now peacefully...most probably for the rest of the night. Tomorrow is another day and we begin again. 

They say nothing is normal when it comes to lung transplants everyone and every case is different. So I guess should not be surprised when today I had to spend some time helping the nurse shoo out a fly that had gotten into the  ICU :)

reconditioning her back

Jane stayed off the ventilator for a few minutes today but she got a little tired so I put her back. But we will keep trying until she's able to stay off on the ventilator longer and longer. Once she is able to stay on for a full 24 hours and then they will take her off completely. 

At this point Jane's lungs and other organs are all functioning properly. Now we are in the process of reconditioning her back to where she was minus the bad lungs. Jane is doing strength training in physical therapy twice a day now like Arnold Schwarzenegger and working very hard. Her strength is growing fast and soon she'll be able to walk  and breathe again on her own.

So tomorrow more of the same training and seeing how long she can stay off the ventilator.

day 20 in the ICU

Today is day 20 in the ICU. But it is not as bad as it sounds.  Among the pain and discomfort Jane has made consistent progress over these days.  Today Jane stayed at 50 percent ventilator and did physical therapy without problems. Tomorrow will be the big day where we will see how she does off ventilator completely. It will be an hour at  time to see how it goes.  Thank you for your continued prayerful support through all.

Feeling Lighter Now

Jane awoke feeling much better after having 4 liters blood removed from her chest yesterday. Also Jane is down to 50 percent ventilator support & doing fine. Jane is relearning how to walk, get up etc. She is unable to talk, so she writes notes.  Looking forward to the progress we will make tomorrow! Again thank you all of for your prayer support. 

Fwd: Jane update 6/22/15

Jane awoke feeling much better after having 4 liters blood removed from her chest yesterday. Also Jane is down to 50 percent ventilator support & doing fine. Jane is relearning how to walk, get up etc. She is unable to talk, so she writes notes.  Looking forward to the progress we will make tomorrow! Again thank you all of for your prayer support. 

Back to the Operating Room

Doctors decided to clean up better stich up the  break  of the  transplant  incision that came apart yesterday. To be cleanest and most comfortable for Jane they decided to do this in operating room...they wheeled her off at 2pm. Yesterday the ended up giving her 2 units of blood due to the stiches breaking. 

Good thing they went in  they found internal bleeding between the lung and skin (hematoma) which must have started after the transplant. This could also cause her stiches to fail.  They fixed it, they emptied out 4 liters of blood! So this is where all her blood was going and why every few days she needed a unit of blood. She did just fine during the surgery and is sleeping now.  Problem of dropping hemoglobin is solved we think. 

We had a little scare today

Another  day another  10  percent down on the  ventilator. Currently on 60 percent pressure support and Jane is tolerating it well. Also another good day of physical therapy. She stood up from her bed (with help) 8 times. Last week she could do only once. They gave her another unit of blood today as her hemoglobin levels are down. They are thinking she has some gastric bleeding and will give medicine for that.  We had a little scare today. While sitting in her chair on of her stiches from the transplant cane undone, she was in a lot of pain and there was a lot of blood. We were a bit concerned but doctors say it is not a big deal and patched it up. Hopefully no more bleeding from that site. Thank you for your prayers

Another decent day today

Another decent day today. Ventilator down to 70 percent and Jane is handling it just fine. Strong with physical therapy...hoping to stand soon. There is lot of fluid build up in her legs which makes them hard to move.  They working on get that out..giving Lasix. She got another unit of blood today to help with strength. She got another  bronchoscopy today to flush out more mucus. Lungs still look great. Forging ahead with her recovery.

extra exercises

Sorry for the late update but I am happy to say that it was another two step forward day. First step the ventilator is down another 10 percent so 80 percent and Jane is handling it just fine. Second step  she is more  gung ho about physical therapy. Even asked to do extra exercises with me helping her. Still has a slight fever in mornings but hasn't finished antibiotic cycle. Thanks again for everyone's prayers! 

two step forward and one step back

Jane better, more energy and was able to do physical therapy better today too. Fever is down as well. They have decided to make it a point let her rest at night  (the amount blood draws and tests etc) and let her work in the day time. Ventilator was reduced today about 10 percent...she is doing fine with it. They say in this recovery you take two step forward one day and one step back the next day. Today we took two steps forward.

stiches where the donor's lungs were connected

She has been excellent all weekend...good breathing numbers. However this Monday morning about 3am she woke with difficulties breathing and has slight fever. They did a bronchoscopy on her at 9am sucked out a lot of mucus. Doctor said this normal and she should feel better now. Also said make sure they continue with physical therapy today.  

Transplant surgeon let me watch this time very interesting.   I was able to see the where the donor lungs are connected!

A couple of hours later her fever is down and she us breathing good again as the doctor said.  

Did physical therapy as planned. 

Momentum increases

Jane is better today fever is down and x-ray shows pneumonia is better. The shotgun approach of antibiotics seems to be working.

Doctors are happy saying we are slowly winning this war! PTL thank you for your prayers!

Today more physical therapy...she not happy about that...they say she has to work hard in PT to stay getting better.  She should sleep well tonight. Breathing number continues to be good. They will start to slowly wean her off of ventilator if she sable for the weekend. 

shotgun approach working?

Jane is better today fever is down and x-ray shows pneumonia is better. The shotgun approach of antibiotics seems to be working.

Doctors are happy saying we are slowly winning this war! (99 % oxygen saturation) PTL thank you for your prayers!

Today more physical therapy...she not happy about that...they say she has to work hard in PT to stay getting better.  She should sleep well tonight. Breathing number continues to be good. They will start to slowly wean her off of ventilator if she sable for the weekend. 

FYI..
We had our windows washed today!

 

Pneumonia

Today physical therapy was harder for her.  Perhaps she is tired from yesterday she kept dozing off.  Was not to interested in listening to the therapists who said they will come back tomorrow. She did sit up in a chair today.  For almost 3 hours. Here breathing number are great but still on ventilator.

She had a slight fever in the morning which went away. They are running all sorts of test to see what is caused the fever as this maybe an infection which is effecting her breathing improvement. Her lungs are fine for the most part. They say her lower lungs have fluid/muck/pneumonia, which they did not tell me yesterday.

Fluid is due to an infection of some sort. This fluid is making lungs harder to work.  Plan is to give her a wider range of antibiotics in a shot gun approach.  They did take cultures form her lungs in the last bronchoscopy (yesterday) but it did not show anything yet. If it ever show them the infection they will know the exact type of antibiotics for her.

They fell confident that once her lower lobes clear up there will be a major improvement in her breathing.  Now we wait.

First CAT Scan

The CAT scan from yesterday came up normal lungs are looking good as well as the rest of the body.  She still has a cycling slight fever of 100.3.  This fever and other thing she must have a small grade infection which maybe impeding her breathing improvement. 

They did another bronchoscopy to get more samples to check for infection. 

We have to wait 24-48 to know if any shows up in the infection cultures.  If the do they will treat with antibiotics.

On the PT front they sat her up in a chair today.  She is sitting there now and will do so for an hour and a half. As see her sit in the chair she looks a lot like her self :).

Tracheostomy Done

They are reducing sedation now that she is on the tracheostomy, she is more aware of her surroundings. But this means more pain.  Also this has happened right when they are starting physical therapy...she is not happy. Breathing has not improved today but hard to tell with all the new activities she has.  They want get her moving so her body won't get weak.

PT got her sitting up on the bed today with her feet dangling :) well with some support, but still a victory.

Doctors ordered a CAT scan today to make sure she has no blood clots. Will also be used to check how lungs are doing.  Although Jane is improving doctors want to see faster improvement.  The CAT scan will give them great pictures so they can make sure they are not missing anything.

It sounds kinda funny to me but when the did the tracheostomy they used a kit. They used what they called a tracheostomy kit on a box.  Yes it did come in box picture below!

Need a tracheostomy

Today is another day, she seems to be doing better in her breathing, was working without much ventilator since yesterday at noon. 

So her breathing capacity is slowly improving. But still not vent free yet.

However, they do believe it is better now to remove the breathing tube and do a tracheostomy. This will put a temporary opening in her throat for the ventilator.

This is preferred because it prevents infection and will help her get off sooner.  She will need less sedation with this method. She will be more comfortable.

Still won"t be able to talk but will be able to mouth words. And look and feel a whole lot better.

Yes this is another procedure to recover from but a much better than having a big tube down your throat for the next few days.

Thank you again for all your prayers. Procedure is scheduled for this hour. Also rest of chest tubes are removed today!

Day 2

8:27 am

Today. still on pressurized masked called cpap. Blood gas levels are better today than yesterday. Still not able to breathe on her own. Her new lungs haven't quite woken up yet and her body not used to them yet this is part of her breathing problem. She still breathes like she gasping for air and breathing twice as fast as normal. Doctors are saying this is understandable due how big a surgery she went through.

9:11 am

They are stongly considering putting her back on the ventilator until her breathing pattern gets better because now it very tiring for her to breathe this way through the pressure mask. She struggling to take deep breaths. Doctors feel she should be breathing better after a day or two back on ventilator. 

10:11 am

She back on the ventilator wow she looks way more comfortable now. Also sleeping

9:43 am

Still on ventilator hoping ventilator will train her body how to take deep breaths. Jane seems to not be able or not know how to take deep breaths. She needs to take deep breaths in order to make use of her new lungs. When she is sleeping it is better but when she is awake she tends to take quick short breaths like she is hyperventilating. Seems like she is getting slowly better

D-Day

6/4/15

4:53 am

They said she will be back in icu in about another hour. Wow that means that she is already breathing through her new lungs!

5:33 am

Jane is out of surgery in back in the icu. Spoke to the surgeon everything went as expected and without complications. Her first new lung was 'turned on' at 2:20 am her second new long turned on at 3:44 am. I should be able to see her soon. She should be off ventilator later on today and I can talk to her

 

8:42 am

Jane is in and out. Still on ventilator. But clearly very  cognizant

9:56 am

Jane just had her first post transplant  bronchoscopy. Everything looks good connections to new lungs and lungs themselves looking great.

1:02pm

Jane may not being coming off ventilator today. Lungs not getting oxygenated as desired. They are going to give her epidural so she can breathe deeper on her own without pain. This should help.

2:45 pm

They just took her off ventilator. Breathing on her with supplemental oxygen now. Next step ween her off the oxygen.  Still a ways to go but making steps in right direction

The Call

We got the official call about 1:30 pm today. I happened to be working from home today so I was able to drive Jane to Northwestern Hospital. Otherwise she would have had to take a cab or have a friend drive her and I would meet her there.

It is exciting and very scary at the same time. When we arrived the started taking blood and running tests on Jane.  They said there is a 30 percent chance that we would be sent home. The won't know up till the time until they wheel Jane away if the transplant is a go or not.

The donor was scheduled to go into surgery at 9pm and Jane was scheduled for surgery at 10pm.

We have been at the hospital since about 4 pm and we were getting anxious and hoping we would not be sent home. IVs were started on Jane and we sit and wait in the ICU.  The two anesthesiologists came in to talk to us tell us the risks.  He said as far as risky surgeries this is as risky as it gets. After asking more questions they left

Then suddenly about 10:30 pm, one of the anesthesiologist came back and started to roll her away.  I looked him and said is it a go? He said yes its a go.

I rode along side Jane as long as I could then they said that I could not go any further we did our kisses and goodbyes... I told her if she is really lucky she will wake up and see the face of Jesus. And if she was unlucky she would wake up and see my face. She liked that!

They told me I could wait in the room Jane would be brought back to.

I am wearing purposely wearing my Rocky 3 shirt.  Tonight it is the night of the champions the doctors of northwestern, Jane and her lung disease. Either way when she wakes from the surgery she will be cured of her lung disease.