Broken GJ Tube

Wouldn't you know it right after we start to get some use out of the GJTube (for crushed pills), it stops working!!! It has clogged up in a way no one can fix.  Only solution would be to go back in the OR and get it changed out.  Thank you no. We are too close to going home to have another procedure go a rye. Jane is up for that an will start to swallow pills rather than going through another procedure. She swallowed all for tonight without any problem.  We will get the GJTube removed at a later date now that we don't use it.

Being Monday it was busy day lots of visits from doctors, nurses.  We are still on track for getting out of here this weekend.  The physical therapists cleared Jane for going home. Still need clearance from the transplant team medically but it seems like that will be the case. We will have meeting with them this week to finalize everything.

We finally got doctors to set up our home BiPAP machine so we will try it out tonight. We had some more friends from church come and visit which made for a fun after noon.

The Bandage Change

This morning Jane surprised me.  She got tired waiting for the nurse to come by to change her bandages and decided to do it herself. She walked over with her walker to bathroom sink stood there and started to change all her bandages herself. And she did it! I watched and gave her a hand holding things now and then but she did all herself. 

This a major a accomplishment and shows more evidence she is ready to be home soon. I told the nurses and transplant doctors all were very impressed. 

Doctors still have not come by fine tune our home BiPAP machine so we will be at the hospital for another day or so.  However taking with transplant doctors and considering how things are going they are thinking maybe we can skip rehab and go home from the hospital. That would put our discharge date to Friday or this weekend as we had planned. 

Jane and I are both in agreement with that!  They will have the hospital physical therapy make an assessment of Jane's abilities tomorrow and we will see. 

Pills down the tube

Jane is was still feeling nauseous today especially when takes all her pills. So they have decided to crush all her pills a give them to her through her GJ Feeding Tube. Which has worked out great today. Less nausea and more of an appetite. And no pills to swallow.  We can do this until she is able swallow all her without nausea. 

Doctors have not come today to refine our home BiPAP so we cannot go to rehab until Monday. They want to refine settings on machine and then have Jane sleep on night on those settings so see haw things go before releasing her to rehab. Not sure if this pushes out our release date of next weekend. But we will insist it does not. 

Other than that good day. Did some walking around the halls. She still not happy with how quickly she gets tired out. But I reminded her how far she  has come!

Trilogy BiPAP

Today Jane was feeling very nauseous so wasn't able to eat much breakfast or lunch but had a little bit of dinner as she felt better. They delivered our home bipap machine to the hospital room. So we can learn how to use it before we get home.  Doctors will set up tomorrow and we will try using it Saturday night.  

We will go to rehab Sunday and hopefully be discharged home next weekend. That's our hope. 

Boring Day Today

Today I was actually a little bored for the first time. Maybe because our minds are set on being home. But it was.nice not to have much medical excitement.

Today also first time Jane ate little bit at breakfast lunch and dinner.  We walked a few times in halls as usual. 

Quiet Jane news day today. Thanks for everyone's prayers!

biopsy results.

Finally got biopsy results. Happy to say zero, no, nada, no new rejections. Plus the lungs in general look great.  That news made the day overall nicer. Jane is feeling and breathing better today. Also, we had a visit from a friend form church and had a good. 

Still on track for being home in a week or so. Should be going to rehab late this week.  

Testing is showing that Jane's right diagram is not moving much. This could explain more of why her  breathing is not where they expect.  Looking back on testing done on her in 2013  before transplant right diagram wasn't moving much then either.  They don't think this too much of a big deal. But plan to look more into this in the future. In general Jane is on the right track to have her breathing to slowly improve as time goes on diagram or not.

Quite Day

Had a quiet day today. Which fine because of the crazy day we has yesterday.  Her breathing is a little more labored today...that's because of the bronchoscopy and biopsy yesterday has caused air irritation. Her voice is scratchy for the same reason. All the doctors are surprised and very happy to see her complete recovery from yesterday's respiratory failure. 

Now we are gearing up to go home soon. It is at a point where staying in hospital is becoming more of a barrier for her recovery and the doctors agree. We still don't have results back from biopsy yet should have tomorrow. 

Physically therapy at hospital has been light as they see Jane is able to most basic things again now herself. 

Right now looks like we will be back to rehab in two days or so. Then about a week there then...onto home, finally! Assuming no more weird complications. 

Total Respiratory Failure!!!

Bronchoscopy/biopsy did not go as planned but it ended up being a happy ending. The doctor came to see me after the bronc was complete, said Jane did not do well and had full respiratory failure.  So he had no choice but to put her on the ventilator to keep her breathing.  They had already whisked her away to ICU by this time. The doctor who did this is considered the best at Northwestern for doing broncs. He said he does not know what happened and can't explain why she crashed but she crashed instantly and very badly. He looked upset and bewildered. No one wanted Jane back on the ventilator because she may become stuck on it.  But there she was back on it!

I was not happy and seeing us back to square one in her recovery. I called Jane's cousin Carol who had encouraging words and prayers.  When I got back to the room I woke Jane up and I could tell she was really pissed off...this is a good sign I thought.  Then she was like WTF! and wanting the ventilator tube pulled out her mouth immediately.   They did not want to take her off but after seeing Jane's reactions and alertness for a few minutes they just pull the tube out.  And Jane a little angry but fine :) breathing on her own.  This is all of your prayers and God confusing the wise. I guess that makes us the fool  who God used but I will take that.

We are now out of the ICU and back in our room resting after a long day! We will get the biopsy results tomorrow.  

Tomorrow at 10:30 am

Jane is feeling less nauseous today. So able to eat a little bit of food and drink her boosts. Wen for a couple walks in hallway for exercise.

Tomorrow at 10:30 am  Jane has her 60 day bronchoscopy and biopsy. It's pretty routine but Jane is very anxious as all procedures have ended up in complications. So please pray for peace of mind for Jane, no complications and no new rejections. We should have results of biopsy that day. 

feeling nauseous

Jane was  feeling nauseous last night so she didn't sleep well. So today we took it easy and she took extra naps. Not much of an appetite today either. The nausea has gotten a little better as the day went on. Her nausea is caused by her rejection medications and she does take anti-nausea medicine for it. Some days it isn't enough. Hopefully tomorrow nausea is better

looking very forward to being home

Good day today. Little bit of physical therapy and rest. Jane is doing good. We even caught a glimpse of navy pier fireworks out our window.  Both of us are looking very forward to being home when this is all over. Thank you for friendship and prayers and support!!

labs are looking good

Had a good day today. Jane's labs are looking good. They are not bothering to check CO2 levels because Jane is physically feeling and looking much better. Couple friends from church surprised us with a visit in the morning which was a nice treat!

We found out we are scheduled to go back to rehab next Monday or Tuesday. Which we are fine with because we are comfortable at hospital. The physical therapy is as much but Jane and I make up the rest on our own. And we get to hang with Ernie the service dog :)

Jane is scheduled for her bronchoscopy Monday during which they will do her a lung biopsy to check for any new rejection.  If rejection is present they will give her the appropriate treatment for it. We are a little anxious be every medical procedure seems to have it complications regardless of how simple. 

cystic fibrosis

Ernie the service dog was back today ( I thought his name was Eddie in earlier updates). We love to see him and we found out today that his mother (owner) has cystic fibrosis and is on the list for getting a lung transplant! We were able to chat with a couple of their family members. Jane shared her transplant testimony. 

Had easy going day no tests. We walked in the halls four times throughout the day. Jane is doing good had more energy today.  They may send us tomorrow to the rehab center or if not very soon. 

Both of us personally like it here better at the hospital...sounds weird to say. 

mechanical soft to regular

Today was just like yesterday expect no tests and no Eddie the service dog. Jane is resting up and gaining strength to go and finish up her physical therapy at RIC. We don't know what day we will be sent back but I am sure by end of the week.

We got her diet upgraded today from  mechanical soft to regular...so now she has more hospital food to choose from. Which is not as great as it may sound . But either way if Jane ever get a craving for something I can just go out and get it. Like today it was for a  McDonald's sunday. Which we both had for dessert. 

Eddie

Pretty much an all good day. CO2 levels continues to drop today is at 60. Jane has more energy and less sleepiness today. Appetite is still there.  It's good to see her like this. 

CT scan was done of her lungs again to check fluid status around her lungs.  We haven't gotten any word back on results.  An ultrasound was done of her body checking for new blood clots. None found and old one in her is dissolving well. 

 

She is getting another unit of blood today to top off her hemoglobin...that will give a nice energy bump. Her hemoglobin did drop (6.9) they believe cause of many blood draws she has had. 

We were visited by friends and earlier in the day meet a cute little service dog named Eddie. Picture attached. 

 

Chiago Air and Water Show

Quiet day today. We were able catch a little bit of the air show which was fun. 

 

Jane will be on the BiPAP (I was calling it CPAP in updates earlier by mistake) tonight again to see how much more co2 can be removed. They want to a level in the 40s. Currently her co2 levels are in the 60s. She, like yesterday more awake today and has more energy.

Will be an interesting week to see how much of the co2 we can get rid of.

 

Thanks for everyone's prayers!

Another moving day

Another moving day. They moved us out of ICU and into a regular hospital room on pulmonary floor. Good timing because this will give a decent view of the last day of air show tomorrow. 

They have been able to get Jane's CO2 levels a little lower by using the cpap machine over night. Also tests show her kidney function is improving.  Which equates not needing to be in ICU

The transplant team has been hard nosed about all her tests so the fact they OKed  her moving out of the ICU says a lot about her wellness. They do believe she is malnourished needs more protein. Good that she is getting her appetite back. 

Our new view

 

We will stay here until she get more strength back then it's back to RIC to finish physical therapy so we can go home!

ham cheese McMuffin

Our second full day back in the ICU.  Got a little bit of physical therapy today...this not a rehab place so we can't expect the same. We will doing more on our own.

 

Today for the first time since the transplant Jane had a little bit of an appetite. She had a craving for a ham omelet and hash browns. So I went out a got her ham cheese McMuffin and hash browns at McDonald's. She ate about half and was very satisfied. She ate more during the day too as well as drink her ensure. 

 

We have two medical issues the transplant team wants to get stable before we get can go back to rehab. Be able to get more CO2 out of her system by using the cpap and make sure her kidneys are ok since her excess fluid is not coming off. They have tests set up this weekend to check.

 

Physically Jane looks great today.  A little sleepy at times but overall very wake and alert. We are looking forward to breaking out of here soon!

CPAP is working

This morning Jane's CO2 levels did go down but not very much but she is physically 10 times better and more awake and breathing better. So they are agree CPAP was a success. She did get a good night's sleep finally so that helped very much...she was sleep deprived. Wearing the CPAP allowed her to sleep better.  

 

Last night when they went to do a fluid drain on her lung the ultrasound showed not much fluid so they did not have to do the drain. 

Lung transplant team is happy to see her progress but want to do more tests on her while they have her in the ICU. They still believe she has water around her lungs and doing a CT scan to verify and pinpoint location. (We will get results of the scan later tonight).  Also they believe  her CO2 levels can be brought down even more by adjusting the levels of her CPAP. Which they are going to study. Seems like we will be here for another two days.  But good that they have a handle on this. 

Transplant team is not going to do bronc and biopsy yet until they believe she is more stable. Sometime later week is fine. They are not concerned about new rejection because of the big improvement she had last night. 

So overall things look better today. Jane is wide awake and able to have a conversation with me without dozing off. Her muscle tremors have reduced as well. So it was CO2 overload, sleep deprivation and fluid.  She will probably need to wear this each night. But no big deal it is just a sleep apnea mask. Thanks for everyone's prayers. 

Jane's blood CO2 was too high

We had a bit of a setback today as we got sent back to northwestern hospital because Jane's blood CO2 was too high. This comes from her breathing not doing good enough job of expelling it. We realized something was wrong when she was super sleepy all the time and she was starting to have more body tremors. 

Here now at northwestern they believe the main problem is still fluid around her lungs. The fluid is from all the excess fluid in her body. They are correcting the high CO2 by putting her on a CPAP machine to help her breathing. Preliminary tests show it is working. Also they are doing procedure on her right now to physically drain the fluid around her lungs with a needle. 

Tomorrow morning they will do a biopsy to rule out that the lung fluid is being caused by more organ rejection. 

They are investigating the tremors too. First guess is that it's caused by high CO2. Sleep deprivation (Jane has not been sleeping well at all) or vitamin deficiency. If not they are dedicated finding why it's happening. 

More testing will done on her kidneys too make sure they are working correctly to flush out fluid. 

 

It was not fun being back right where we started. But the doctors tells us it's a means to end of these problems. That is what we pray.

IVGI treatment

This morning we physical therapy and in the afternoon an  IVGI treatment.  If you remember this was the treatment she had to take for the antibody rejection she had a month ago. Jane will have to take this treatment once a month for the next 6 months. It's pretty simple she just needs to have it administered through an IV.  Doesn't have any side effect just takes a couple hours.  

 

Today the transplant team feels the biggest problem is the fluid retention. Her legs and lower body are still swollen which makes it hard for her to walk and that same fluid is in her lungs making it harder for her to breathe and still needing a little oxygen. They don't have a quick solution her body will have to get rid of it over time. Getting back to normal eating and movement will be what helps that happen. 

 

Thursday the plan is to do a bronchoscopy and biopsy of her lungs again to make sure she has no new rejection going on making it hard for her to breathe.  So for that she will go back to northwestern as an outpatient.

denied parole

We have been denied parole they have extended our release date for another week. 

We were kind disappointed cause we were amped up to leave this Friday.  But we understand why. The lung transplant team would like us to stay another week for Jane to get stronger before going home. They want to do more tests for rejection as well before we go. Our new release date we think will be Friday August 21st. Will know for sure tomorrow. 

Getting another week of therapy is good Jane will be even stronger then. They also will have more time to train me for caretaking.  

Nose is still not bleeding today which we are happy about.  And had good day of physical therapy.  Thanks for all your prayers and encouragements!

Hoping for another good night's

Today we seem to have the nosebleed under control (knock on wood). Doctor removed the tampon this morning it started to bleeding again but was stopped by holding pressure on nose and using ice. So the problem was blood thinner. Today it was out of her system so her blood clotted. If by tomorrow the nosebleed does not return they will start her on blood thinners again.

The reason she needs thinners is she developed a few blood clots when she was bed ridden after the surgery. Those clots have all gone but protocol call is keep on blood thinners for at least three months after clots are first found. So she has a few more weeks. Unfortunately these are kind she has to get injected into her abdomen skin 2x a day...they are pretty painful. 

We had a light day of physical therapy being it is a Sunday but that's fine be Jane was pretty tired.

 

Appetite still not back yet but believe it is because.of hospital food.

 

There is some oozing today form a point on her surgical scar...they are pretty sure it is just excess fluid and not an infection. Will keep an eye on it as it drains away on its own. 

 

Hoping for another good night's rest so energy for tomorrow

A tampon

We didn't get much sleep last night. Just after I had finished sending all you yesterday's update Jane nosebleed started again with a vengeance. They tried a few things and wasn't helping much. I was hoping the get her back to northwestern emergency and see what they could do which was one of the options they were talking about.  The last try was using a tampon laced with afrin nasal spray and sticking it way up her nose... it  worked.  Still took a couple of hours for Jane to stop coughing up blood and  clots from blood flowing down her throat during the bleed.   

As of this morning it is under control.  And Jane is feeling better. Was able to do her physical therapy. They are going to keep her off of blood thinners until we are sure the nosebleed has stopped. The tampon is still up her nose will try and remove it tomorrow. Looks pretty uncomfortable but not bleeding anymore. 

Another day closer to going home

Another day closer to going home.  We had good day of physical therapy although Jane did get a nose bleed in the morning which was difficult to stop. Nosebleed was caused by the dry state of her nose (supplementary oxygen is very dry). And because of her blood thinners was hard to stop. Finally did after using a decongestant. But starting bleeding again tonight which was stopped in about an hour.  They will hold her blood thinners for a day or so to give it a chance to heal.

 

Appetite a little better but the gluten free food here doesn't have a lot of choices. But the ensure drinks are still working out well. :)

 

A lot of you have been wishing us congratulations for getting home pretty soon thank you very much for that! We will be home in week and it is a major milestone. However the hardships of recovery are far from being over.  We will have home health nurse visit to give medicine and change bandages from surgery.  We will have hospital visits at least once  week. As time goes on things will slowly get back to normal.

Still no tube feeds

Got another strong day of physical therapy under our belt today. They started Jane practicing things she would be doing when home. Like taking things out of refrigerator, stepping up and down off of curbs with walker, getting in and out of shower etc. The exercises have been very helpful. Jane is not using oxygen at rest just when gets moving and winded.  Still working on getting her appetite back but at least she has the ensure drinks. Still no tube feeds. Coming right along as expected. Endurance is slowly increasing each day. 

 

Friends have been telling me that even though we may not be here for the actual air show. We should see them practicing before we go :)

No time to eat

Today they kept Jane so busy with physical therapy and doctor visits she barely had time enough to eat. But then again her appetite is very small. Supplementary ensure drinks are working well she has enough calories to forgo the nightly tube  feedings.  Also today Jane is feeling comfortable enough to not use oxygen all the time. Now only when she feels out of breath.

Thanks for everyone's prayers!

El No Trach-o

Today they removed Jane's trach (Tracheostomy)  She has had it since the first week of the transplant and was used to connect her up to the ventilator. Remember those ventilator days? Now she has been off the ventilator for almost 3 weeks and won't going back so there is no need for her have the connection in her neck. All that remains now is 6mm hole which is bandaged and will heal over in a few days. 

 

Also today Jane walked 30 feet more in 6 minutes than last time. So slowly but surely getting stronger as we prepare for our discharge. In about 10 days. We are still working on her appetite so tube feeds can be totally stopped.  Dietitian started her on Ensure drinks to help her oral calorie intake.

Friday August 14th

Our official discharge date is set for Friday August 14th. Both Jane and I are glad we get an extra week of therapy and prep before we going home.  And just as much we are looking forward to be home again. 

 

We had another strong day of physical therapy today. Having a clear discharge date goal has given us more focus and plan on how to get most out of the remaining therapy. 

 

The only bad part of this date I just miss the Chicago air show  which is on 8/15. Could have watched from our window!

full two weeks

As of today we have been at RIC for a full two weeks. It has been a great place for physical therapy. They say it is the best in the country but for that I thought it would impress me more. But regardless we are very thankful for being here.  

 

I had mentioned earlier that they set an initial discharge date of 8/715. We are pretty sure that date will pushed out at least a week or more. Which is good.  We are relived . Both of us need a lot more rehab before we get sent home. 

 

And today was a good day. Got good physical therapy and did extra on our own. Jane walked the longest and fastest she had ever with me.  Still very far from where she was before transplant but slowly getting there. Her appetite is better but enough to sustain the work she is doing so she gets tube feeds at night to compensate...which by the way is one of the things we want to be free from before we go home. Thanks for all your friendship and prayers!

that pesky edema

Another quiet good today. We did not get scheduled for any physical therapy today which were disappointed in...but today is our scheduled day of rest.  We did therapy on our own to make up. We also had a visit from friends at church which made the afternoon very enjoyable. 

 

That being said if you ever want to come visit us please do we love the company. Only restrictions are no kids and don't come sick. And then stay around to enjoy for yourselves the lake, excellent restaurants and or shopping literally blocks away.  Parking is cheap.

 

All medical things with Jane are stable. Just that pesky edema (swelling) of her lower body.  And continued efforts to strengthen up.