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.