Mom’s Birthday (July 14)

 

Yesterday, July 14, was my mom’s birthday. I’m sure it is not the way she wanted to spend her day. Sorry it has been so long since we updated. I am worse at updating this than the original blog.. lol.

On Friday, my mom had about a liter of fluid drained from around the lung. It looked like old blood. On Saturday afternoon, they removed the breathing tube because it was there but she had been breathing on her own for a few hours. At night they have been putting her on the cpap machine to keep her lungs open and during the day she is just on a nasal cannula. 

She has been on a feeding tube for nutrition, but hopefully she can eat some real food soon. 

Yesterday when my sister and dad got there,  she was working with physical therapy. She is very weak and my dad and Janet stepped out so the physical therapy people could do their thing. They said she did well. They are going to remove a drain and put it in lower to drain the lower cavity blood. 

She is being put back on 24 hour dialysis. Her blood pressure dropped too low on the other dialysis. We obviously want to move her out of the icu but right now she is still in critical condition. The social worker came to give a list of care facilities for after the hospital. She wants us to pick at least 3 that we are interested in. On a good note, there are multiple locations that are close to us and it will be much better than driving to UH everyday. She would only be there temporary until she gets her strength back. 

I am going to the hospital and working from there shortly. I was supposed to go yesterday but there was an issue at work and I couldn’t leave. Hoping for good news.

Another update

They ended up taking out the breathing tube the other day and she was on cpap. When my dad and sister were there yesterday, she kept saying she wanted to die. Today she is on something call airvo cannula. The doctor said it’s different than a high flow cannula, that this one has heated air and is humidified. She is at 50% oxygen and her pulse ox is good at 100%.

When I was there earlier today, the plan was for her to get a CT scan later to check her lungs because her most recent xray did not look good. A few days ago, one provider said it was a hematoma near her lower lung and that the blood should be absorbed back into the body. Needless to say, it’s not looking like it is absorbing. The xray in the picture shows her left lung area and all of the white. The picture is reversed so the right side of the picture is actually her left lung. Her left lung should look more like the left side of the picture with all of the black between the ribs. They are trying to figure out if it actually is a hematoma,  fluid or something else there. 

He said if it’s thicker fluid or some mucous,  most the time a person like us can cough that up. She has coughed hard a few times since I got here. If she can’t cough it up, they might not have to open her up completely but they could put a bigger chest tube in. He said it could be a mucous plug that is stuck there. They are giving her the airvo because it has heat and humidity and that could help break up the mucous if that’s what it is. 
She does have some bloody secretions around her mouth and the nurse said that is from the tube being in her throat so long but after talking with the doctor he said it could be her coughing up some of what is in her lungs. The nurse said they have been cleaning her mouth and then brushing her teeth every two hours.  
 
He said they may have to intubate at some point and put a camera down her throat to try to see what’s down there. He said once they find out what it is, worst case scenario would be that they would do the temporary trach but they are trying to do everything else to remedy the situation and that would be the last step.

 Good news is that they had her sit up on the edge of the bed this morning and stand up! The nurse said she did good and wasn’t too unsteady.

The Physician Assistant said he was surprised she did so well sitting up and standing because she has been through hell and hasn’t really had any nutrients. She needs nutrients because she is just getting weeker. The last time they tried to tube feed her, they stuck it down her nose and that’s when she had blood gushing out of her nose that wouldn’t stop. He said her tissue is fibrile(?) because of her rheumatoid arthritis medications and that’s why they had all of the trouble with the blood clotting before. 

I asked the PA if she said she wanted to die today and he said no and that she was in good spirits today. He said a lot of patients say they want to die but don’t really mean it. When I was there this afternoon, she had her eyes closed the whole time and I said Mom it’s Sue, I’m here. We are all rooting for you and want you to come home and the kids and dad miss you. She then shook her head yes. When I left I said I love you mom and dad will visit you tomorrow and she shook her head yes again. I don’t know if she recognized me but I am happy she is responding, even when I was talking very quietly.

 
After typing this all out, the PA called my dad and said he spoke with my mom and explained the whole situation to her. She said she is ok getting the tube placed for the camera and also ok if temporary trach needs to happen. That makes me feel better because at least she knows what is going on and is ok with everything. They are going to be doing the tube with the camera so we will see what that shows. 

Update on Mom

 I have been meaning to update this blog for the past two years but so much has happened that it has been very overwhelming. Right now, I am going to use it to update everyone about my mom’s recovery from heart surgery.

She had heart surgery on June 26,2026 to have a valve replaced. We were hoping they would be able to do the TAVR procedure, where they go through an artery in your groin because the recovery would be much easier. My mom has rheumatoid arthritis and is on a bunch of medications that make her immunocompromised. She also has a bicuspid aortic valve instead of a tricuspid aortic valve. She went almost 74 years without knowing she has a congenital heart defect. Needless to say, her medical condition was too complicated to do the TAVR procedure so they had to open her chest up to repair the valve.

This past week has all been a blur so hopefully I don’t mess up the details. She had the surgery and then afterwards, had trouble keeping her oxygen up. She was on the ventilator, then they switched to bipap. She then developed pneumonia in her right lower lung and eventually was switched back to the ventilator. A few days after the surgery, they did an echo and noticed that the right side of her heart looked small, almost like something was pressing up against it. She had a CT scan and it showed fluid build up around her heart. They had to open her back up again, and suction out all of the fluid and old blood. They did not find a leak when they opened her chest back up.

 She had 4 chest tubes placed and they noticed she was having a good amount of new blood and fluid coming out. Her blood didn’t seem to be clotting so they gave her a bunch of different clotting medicines and blood products including blood transfusions, platelets and plasma. Shout out to everyone who donates blood! Thank you! I appreciate you doing that for people like my mom. 

Also during this time, her kidneys weren’t functioning so they put her on continuous dialysis. 

Her blood pressure and heart rate have been all over the place so they have given her medicine to raise/lower it when needed. She is also in Afib so her heart rhythm is messed up. She also has a temporary pacemaker and if her heart rate dips below 40, it automatically starts. 

At one point her oxygen was at 100% on the vent. That is the scariest thing because there is nothing they can do if she would need more help than that. 

Yesterday(7/5) from 8am until about 2pm, they turned off the vent and she was breathing on her own with only cpap I was told. She and her lungs got tired and they put her back on the vent with some sedation so they could let her body rest and let the vent help her for a while. The Nurse Practioner told me the only way to improve her lungs was for her to use them. She said it’s hard for her to use them because she hasn’t used them in so long but the NP said she did great for hours and that we should be happy about that. 

 The clotting medicines seems to be working and there has been much less drainage from the chest tubes. Today, they took two of the chest tubes out and apparently my mom shook her head, saying that she felt better without them there. She is currently still on the vent and my dad said there are talks about doing a temporary tracheotomy on her. I told my dad and sister that I am against that because that is one more surgery that she would be having where something could go wrong. She has a bad track record of bouncing back after surgery, based on the two surgeries she just had. They just got the blood to start clotting and she was doing ok breathing for while, I don’t know why they want to jump to a trach so quickly, even if it’s only temporary. I know she can’t stay on the ventilator for a long time but they haven’t even tried having her breathe without the tube in. The nurse told me the other day that breathing with the tube in is very hard, that it’s basically like breathing through a straw and you tire out quickly. 

The dialysis team is going to put her in 12 hour dialysis tomorrow instead of continuous to see how she does. The doctors told my dad that when my mom(hopefully) gets out of the hospital, that she will need to go to a rehab facility because she won’t have the strength to do anything by herself and we won’t be able to assist her with everything that she needs. 

I don’t even want to worry about that yet. I just want her to start improving. Hopefully, she will not need the trach. We are not sure what the future holds so please send all your thoughts, prayers and good vibes her way. Thank you!