staffing issue

Quiet good day today. Physical therapy was light today for some reason. Perhaps a staffing issue. To make up Jane and I did some extra afternoon walking in halls. Just a few minutes enough to tire her out. She said she felt a little stronger today.  Thanks for everyone's prayers.

aspiration will cause pneumonia

Well the blood did help. Last night when told you she was out cold...well I thought...she woke up about 9:30 pm after the blood was given and just wanted to walk around the room which she did.

 

Today she feels better not so worn out, hemoglobin is at 8.4 She say she can see and think better. She was able to walk 139 feet with the walker without taking a rest.  Prior only about 90ft.  Being back on lasix she is seeking less swelling in her legs which she is happy about.

 

They are stepping up physical therapy on her speech and swallow. Since the swallow tests showed  slight aspiration on swallowing liquids. So they do all sorts of swallow exercises with her.  It is important for new lung transplant patients not to have aspiration as it will cause pneumonia. 

a dose of Dilaudid

The PICC line is in a Jane is getting her unit of blood as I write this. They have been wanting to do this since last Friday. 

 

While in radiology before they started the line Jane was feeling very anxious and asked for something to relax her. She was given a dose of Dilaudid and she has been totally out since getting back in the room.  

 

She has had Dilaudid couple of times before at Northwestern with the same effect so out you can barely wake her.  She should be awake and over it in the morning.  And hopefully a little peppier. 

So no physical therapy or chatting this afternoon with her.  Tomorrow is another day. Thanks again for your prayers!

A little bit aspiration

Jane's swallow test under the x-ray shows a little bit aspiration (going down the wrong way) when drinking. This means she will have to take care when drinking and remember to only swallow liquids with her chin tucked down. This helps her throat muscles swallow more properly.  Soon her swallow muscles will become stronger and she can swallow normally.

 

She seemed stronger in physical therapy today and we were able to talk and hang out. Other days after physical therapy could hardly keep her eyes open.

 

Tomorrow we get sent back to northwestern (out patient) to get that picc line inserted and hopefully get a unit of blood after that.  We should see a good bump in her energy level then :)

trach has been capped

Today was similar to yesterday more physical therapy. Jane had a little more energy so was able to do more a little more. Hemoglobin levels are low at 7.1 but stable. They plan on sending back to northwestern on Wednesday as out patient to have PICC line inserted so she can get a unit of blood.  

 

Tomorrow they will perform a formal swallow test where they watch her swallow while being x-rayed to make sure everything is going down the right pipes. The consensus is that her swallow is just fine. However since she has had a lung transplant they want to be as sure as they can be. :)

 

Speaking of swallow, her trach has been capped and not used now for about a week. Which means in next couple days the will remove her trach entirely. The hole in neck will close up on it's own. 

 

Jane has not been happy about the swelling in her legs it make much harder to walk. They will start her again on lasix in the next day or so which should help a lot. 

Showing some improvment

Not much to report today pleasantly simple.  Physical therapy went well..They did assessments that showed she has improved over the last week. Which we know. 

Tomorrow is Monday and starts another week. Looking forward to progress.  Thanks for everyone's prayers!

day of rest

Jane had her day of rest today... no physical therapy.

We just hung out in the room watched the boats come in and out of harbor (picture attached), watched a little bit of Beverly Hillbillies. We did do some of the exercises on our own and she walked around room with walker periodically.  Jane had a little more energy. Her hemoglobin is still low but stable at 7.3. No falls today :)

Tomorrow it's back in the saddle again with a full day (4 hours) of therapy starting at  8am. 

They have estimated a  tentative discharge date of 8/7/15 assuming she meets her goals. Jane believes this  is way too optimistic but we will see!

Had a fall today

Today physical therapy was the same as yesterday  and she did a little more. Her energy level is still low swelling still the same. 

 

She has not gotten her blood yet because they have not gotten her PICC line in yet. We had requested that her PICC line only be inserted at Interventional Radiology. Which will be done at Northwestern on Monday...that's the earliest we can get in. Her hemoglobin levels although low are stable. 

 

Jane had a fall today while walking...turning tripped over her feet. She is OK she fell right on her butt only. And this time the swelling came in handy...gave extra padding. Other than a burse nothing else is broken.

 

The chest X-ray they took yesterday...I forgot to ask but I assume is OK otherwise they would have said something.  

 

Tomorrow is her day of rest no physical therapy.  Each patient here gets one either sat or sun.

 

Thank you all for your prayers and fellowship

tuckered out

Today was a slower day. Physical therapy was just as intense but Jane was just tuckered out. She did as much as yesterday she said she felt she was dragging. She did not get a good night's sleep. There is more swelling in her feet and legs today so they were heavier. We will have to make a point of keep her legs elevated when she is at rest. 

 

Her hemoglobin levels are low today 7.1. The bleeding she has had prior days from her GTube is finally catching up with her. They have decided to give her another unit of blood to bump up her hemoglobin. However they were unsuccessful in starting and IV. Jane's arms have been pricked too many times. Hard to find a big good vein for the blood. So they re-evaluate doing blood tomorrow and may do a PICC line if needed.

They did a chest x-ray today because they haven't done on in a while. Making sure her lungs are remaining clean.  Will know results tomorrow. 

 

She is in good spirits just tiered. Having another unit of blood and a good night's sleep should amp her up with more energy.  Thank you for your prayers!

The Starbucks Hack

Short but sweet update today Nowadays we are having 3 step days. Today she walked 90 feet. (Little steps at a time using a walker). GJ Tube still does not bleed. Blood clots she had developed after surgery, most are gone remaining couple in her legs are dissolving...Which means they can reduce her blood thinners. 

 

Oxygen levels are excellent as usual. She on a little bit of supplementary oxygen. 

Today I realized if I walk around with a Starbucks coffee in hand I get hassled less by security about where is my visitors pass. I tested this theory by walking back into northwestern hospital and around a couple of floors. Every time a.gaurd looked my way I smiled and held up my coffee they just smiled back. I guess one looks less threatening with Starbucks coffee in hand.  One can blend in almost anywhere holding a Starbucks coffee. So there you have it I call it the Starbucks hack.

medium bob

Looks like the bleeding from her GJ Tube seems to be under control.  Transplant team came back today with a surgeon who removed a couple more sutures and reset it a bit. 

In physical therapy today she walked outside in the hallway almost 50 with walker.  And stood on her own looking out at lake for more than 15 minutes. She ate more today but still only tiny portions. They have stopped her tube feeds so she should be getting more of an appetite soon.  

Jane got her first barbershop hair cut in her room when a RIC barber came around. She was dying to get a hair cut so settled for barber. Choices were short bob medium bob long bob. She went with the medium. 

Bleeding Finally Stopped

The transplant team came to visit Jane at RIC today. They checked her out...lungs doing well.  To help stop her GJ Tube from bleeding they  brought Surgicel, a blood clotting gauze. Seems to be working they will also suspend blood thinners for a day. They seem to think this should do the trick. 

The physical therapists here are great. They have kept Jane pretty busy today. 

We got moved again this time to a real private room which means I loose my  nice hospital bed. But they got me fold out bed :)

Looking forward to what gets accomplished this week at RIC.

First full day at RIC

First full day at RIC. They spent 3 hours evaluating Jane. Early this week they will have  a personal plan for rehabilitation and an estimate  of how long it should take. During the evaluation they tested her swallow and it's fine. They have cleared her for eating and drinking. However Jane's appetite is not there. They will keep her on tube feeds until she gets back on track with her appetite again. 

Her GJ Tube is still bleeding. They have to change soaked bandages every few hours.  Hemoglobin levels are still stable but I am not sure for how long if this keeps up. She is on blood thinners so hard to clot. Tomorrow is Monday so there will be more doctors on it. They may send her back to northwestern out patient so surgeons there can do something about it. They will have to get bleeding under control before she can do much physical therapy.

Rehabilitation Institute of Chicago

We arrived by ambulance to the rehabilitation institute of Chicago. It is an excellent place for rehab. This is where  Christopher Reeves came after his accident.  Not quite as nice as northwestern when come to medical care. But then again we are here for the rehab. We got private occupancy in double room which means I get my own hospital bed to sleep in. Much better than partial recliner chair I have had.  And even nicer lake view to boot. 

Our first day is slow checking us in and getting us into the system.  Tomorrow the rehab begins. She will get 3 hours a day.

Jane is doing great. Breathing and talking. However her G Tube is still bleeding. If they are unsuccessful in stopping the bleeding not sure how much rehab they can do. They said we may get sent back northwestern for them to fix. We will see. 

logistical reasons

We have not been discharged to the rehabilitation institute yet for logistical reasons. They say it will happen tomorrow but being tomorrow is a Saturday...well experience has shown me the not too much happens over the weekend. So it may not be till Monday.

But that's OK we are not in that much hurry.  We did find out that we will get a private room at the rehab which what we were hoping for.:)

 

Jane's breathing is continues to do great and she is looking better each day. Thank you for your prayers and fellowship.

It's life in fast lane

It's life in fast lane today...in a good way.

 1. They rolled the ventilator out of the room  

  2. They loosened her trach cuff so she can talk now. Yes Jane and I we had our first verbal conversion since 6/3

 3.  She started to drink water and was able to swallow a pill. 

 4. Was able to walk around her room with assistance and a walker.

 5. Jane is doing so well...we are skipping going to a regular room. They want to discharge us to a rehabilitation center tomorrow. 

The rehab center is just access the street. Called  Rehabilitation institute of Chicago

That's fast huh

36 hours off the ventilator!

36 hours off the ventilator now and going strong. Was able have a great day of physical therapy today as well even while off the ventilator.  Currently she is on just supplementary oxygen which was even turned a little today. 

 

All medical staff that came to see her were excited about her great progress.  

 

So the plan is to keep her off the ventilator as long they can. The consensus is that doesn't need the ventilator any more...time will tell for sure. In next day or so if she keeps this up they will make changes in her tracheotomy which will allow her start talking and eating.  And then eventually the trach will be removed :).

 

She does have more bleeding today around her G tube. They say that's normal because of her blood thinners and redressed. 

 

Still enjoying the nicer view and room thank you for your prayers.

12 hours off the ventilator...a breeze

12 hours off  the ventilator seems a breeze for Jane. She has done it 4 days in a row so easily the are going to keep her off until she needs it. They are hoping she can go 24 hours. Tonight they will leave her off the ventilator when she is sleeping while keeping a close watch. We will see how it goes. 

Jane was a little tired and nauseous today to do much physical therapy. She threw up for the first time today. That was several hours ago and she is still breathing well so we are pretty safe that she did not get anything down her new still fragile lungs (aspiration). Also they feel by now Jane has strong enough reflexes to pervert that going down the wrong way. They are getting her different anti nausea meds hoping they will work better. 

I asked we could be moved to a corner room when on came available. And wow one of two corner came available just a few hours after I asked. We are very thankful to be there right now! Got the same size as last corner room...no lake view but a view still not too shabby. Picture attached :) And I say unto you, Ask, and it shall be given

We are movin on up

Moving on up today. We were transferred out surgical ICU and into medical ICU one floor up. This is good because it means her surgical issues have stabilized. We weren't so happy because our room is much smaller and our view of lake is replaced by a view of weeds growing on a roof. Picture of view is attached so you will know what I mean.  Now what is left to do is get off the ventilator and reconditioned back to walking the getting around like she used to.
 

Everything else is the same and doing good. Breathing continues to improve as well as her strength.  We just need to get used to our newer smaller not so nice quarters!

number one patient

Today not much physical therapy but she got some of her own in by getting to the toilet a couple times  :). 

Like other Sundays was quiet and relaxing. Jane did develop  bleeding at her J tube site and had to get a unit of blood. But in the big picture with all that she been through this did not seem like such a big deal...quite the perspective. The bleeding is under control now.  Speaking of perspectives this reminds me of a conversation from a  couple  days ago.  

A new transplant surgeon who  northwestern just hired talked to us .  He was interested and happy at the progress Jane is making. He said something encouraging, he told Jane that she is their number one patient. She is the subject they talk about most in their day. I got from another source that this new lung team at Northwestern hospital are considered the top lung transplant doctors in the country. 

 

So how great is that she has the top people in the country constantly talking about her care.  Also helps that she is currently the only lung transplant patient in the hospital. :) )But regardless amazing what God and your prayers are doing in the background for Jane. Helps strengthening of our faith. Also tells us to let go cause God has it already handled. 

 

Looking forward to the progress we will make next week!

'stellar' day of physical therapy

As one the hip younger nurses said we had 'stellar' day of physical therapy today listening to Back Street Boys and James Brown. Walked several feet made it to the sink where she was able to wash her hands. Her most proud of feat is that she can get to the toilet :). And this while off the ventilator to boot.   She said that is making her feel normal again.

Transplant surgeon believes stopping that anti-body rejection was what turned it all around. 

Blood clot in lung???

12 hours off ventilator today and walked with walker 6 feet. So she continues improve physically.  This is really boosting her self confidence and reducing her fears. They dropped off bicycle peddler machine she can use while sitting in the chair to use through out the day. 

 

The breathing plan for tonight and weekend is to be off ventilator during the day sleep during the night on ventilator to rebuild her breathing muscles. 

We did have scare today when one of pulmonary doctors who we have not met yet came into our room to discuss options with us about a blood clot they found in her lungs. Jane's heart sank...I was thinking this is strange...in about a minute the doctor realized he was in the wrong room talking about someone else!  Ok we can laugh about this now :)

Do the Macarena

Did 8 hours off the ventilator today and did it strong. More steps taken in walker today in physical therapy. I played the Macarena and Jane was able to do the Macarena with her upper body along with the physical therapists.

They did a CT scan today to find out that her lungs are responding well to the anti-rejection medicine she had to take last week and the rejection seems to be under control.  We thought this to be the case as Jane's breathing has improved but this gives more solid evidence.
 

 

Jane has also been able distract herself this week by watching some tv. We were watching season 3 DVD of Beverly Hillbillies and getting some laughs. So we are getting some normalcy back into our lives. Nothing but good news today. Thank you for your continued support and prayers.

gift of life

Today was busy day. Great day of physical therapy Jane took her first steps with help and a walker and was able to get from the chair back to bed with a walker and help. Inspirational music today was That's the way I like it (KC And sunshine band) and in the Navy (Village people).  Didn't have a chance to go without ventilator today but I am sure we will tomorrow.

This afternoon Jane had to have another annoying procedure...they moved her feeding tube from her nose to  a connection on her side that goes directly to her stomach  called a GJ Tube. This will help her nausea and is safer for her to have in the long run. This took up her whole afternoon.

The picture for today is one I took last night outside the hospital. If you look closely on sign on the back window of the truck it says organ transplant team. So last night someone else is getting the gift of life like Jane and I got 35 days ago. PTL 

A picture is worth 1000 words

A picture is worth 1000 words. Attached is a picture of Jane's ventilator settings today from 3:03 pm till bedtime.  Far exceeded everyone's  expectations. 

 

Jane is happy she was able to go for that long without ventilator. The surgeon tricked her a little...still had ventilator physically connected but turned off. That gave Jane more confidence she thought it was just turned down a little :)

Let's see what Jane can do tomorrow. Thank you for your prayers!

25 percent support

Stronger in physical therapy today. Even on ventilator set now to 25 percent support (5cm of pressure).  

This setting is an exciting milestone as it very close not using it at all. Breathing is difficult at this setting but she has been able to keep it up all day.  During the night they will turn up the support so she can rest. 

This week they will try turning the ventilator off for short periods of time as an exercise. Jane feels very anxious when the ventilator is not running please pray for her peace of mind  during this exercise.  Attached is picture of the ventilator settings. 

She is still having fluid build up in her lungs when is making breathing difficult for her.  The consensus here is that this has to do with all excess fluid in her body and should clear up when she is able to walk again.  Thank you for all the prayers!

breathing continues to improve

Today the weekend finishes off quietly. Not chance for much physical therapy  today because of lean weekend staff. Jane xrays look clearer today suggesting that the extra anti-rejection is working and her breathing continues to improve as I see it. Jane even sent out some text messages herself. 

There was some taIk of possible draining extra fluid around her lungs but they have decided against that for now. I am looking forward to the strength progress in coming week. 

Attached is a picture looking outside room window if you look closely in the center you can see Lake Michigan Jane and I enjoy the view!

happy fourth of July

Second easy going day today. Happy July the 4th! Picture attached is looking outside ICUl floor, John Hancock building with its red while and blue lighting for the fourth. 

 The transplant surgeon decided to do another bronchoscopy today suck out more mucus from her lung which had shown up on her daily xray. When she is stronger she will be able to cough out the mucus on her own. The sedation and the bronchoscopy procedure made her too tired to do any physical therapy. But I was able to do some simple leg exercises with her later on. She is stronger today and day by day.  Since her breathing is doing great they are thinking the latest anti-rejection treatment is working. 

Once again happy fourth of July and thank you for your prayers!

Rituximab

Easy going day today. Slow in hospital not as many doctors. Even physical therapy was a little sparse because of the holiday. Jane and I did some exercises to make up. When they did come by Jane was able to get in 3 good stands with the walker. They gave the the second part  of dose of medicine for her rejection which I spoke of in my last message The medicine is Rituximab.  Picture attached.  Bottle says chemotherapy because that is how it classified for handling safety purposes.

Since her oxygen levels have been better since she started taking the anti-rejection medicine we can start to say it is working.

Haha I just realized once Jane is recovered and in future no matter how sick I get I am not going to get no sympathy form her if I complain about it. I can see her now looking down and saying 'Just suck it up buddy, its not your having a double lung transplant!'

Uptown Funk

Today has been a good day. Did really well at physical therapy. Jane worked hard was able to stand up with walker several times (with help).  I did amp her up a by playing some Bruno Mars music which she a the therapists enjoyed :). Going to play music from now on for pt sessions.

 

Ventilator support  is 40 percent (8 cm of pressure) now and Jane is doing good with it.  This is pretty much as low as you can go. Any much more and the ventilator becomes more work than breathing on your own. They will go back to no ventilator trials soon. 

 

More about the rejection form yesterday.  It sounds scary yes. But I am finding out that the antibody rejection in lungs doesn't show up until about 30 days after transplant. This is why they did not treat for this earlier. It is a wait and see. It is not uncommon and it is stoppable. She was treated with 'IVIG infusion' which has minimal side effects. They will know if it works in a couple of days. I am already seeing an improvement in her tonight...I will take that either way. Once again thank you for all the prayers and support!

Got antibody rejection

Got the biopsy results...shows signs of antibody rejection of her new lungs... but no infections.

 

The rejection sounds worse than it really is because they have treatment that stops that type of rejection and will start her on it today. The rejection was giving pneumonia type symptoms and adding to her breathing difficulties. With treatment she should feel relief in couple of days. 

 

Other than that she was on her regular schedule of physical therapy and occupational therapy today and worked hard. Back up to 50 percent ventilator for a couple of days to compensate for antibody rejection.  Plan is to continue with physical and respiratory therapy and weaning off ventilator.