Hello OCF,
Just wanted to give you an update - please read both updates listed below. Mom is not doing well as we thought. We only get 3rd hand updates since none of the children are with her. I would like to ask if you think that she is in serious condition and if it is time for at least 1 child to go and be with her. My husband and I are leaving in November for 20 days to be with them. More suggestions and inputs are highly appreciated.

Mom is 72 years of age, with hypertension, heart problems aside from the cancer and other complications listed below.

When is it the right time to leave the USA and be with her?

Thanks,
Ina


Update as of 5:50 am EST 10/11/2012
I just spoke with my dad, and he told me that Joyse is still in the ICU room on the ventilator to help her breathe normally. He said she was also given some medicines (though they can't remember exactly what medicines) to stabilize her kidneys. She also received a blood transfusion today because her blood count was low.

Update as of Oct 11, 2012, at 2:17 AM
Hi everyone. I spoke with dad a short while ago. He said that Tita Josie is still in the room at the ICU. He said most of the doctors cleared her to leave the ICU, but doctor who monitors her breathing wants her to stay on the respirator a while longer. Apparently, the tube in her mouth is for the respirator, so I was wrong when I said yesterday she wasn't on the respirator anymore. Very sorry about that. Dad said that the respirator is only in the ICU so that's why she'll have stay there for now, but he said she's ok naman otherwise.

I had a couple transfusions while I was in for the mandibulectomy also. That is not so unusual so dont be upset by her having this done. This surgery is a not an easy one at all. Having a big section of your body removed and then another area transferred over to that spot is very invasive. This is why I mentioned that there is no way she could only be in the hospital for a couple days. There are too many variables and things that need to be closely monitored. This is too new, her body needs time to heal.

Think positive!

** added after saw the 3rd update.... I know you are upset but it does sound like she is having fairly a normal reaction to such an invasive procedure.

The question of when to go to be with her is something we wouldnt be able to give you advice about. We are fellow patients and caregivers who do not have medical backgrounds. We do not have her entire medical chart in front of us or many years of medical training and experience to help make decisions.

As I advised previously, someone should be with the patient at all times when anyone is going thru a major surgery. This applies to any type of operation. But it is especially important when a patient may not be able to advocate for themselves. In my opinion part of the issue here is the family's lack of attention to the seriousness of her illness. A mandibulectomy is not a walk in the park surgery. Its very complex and has a high risk for complications. Im very sorry to hear she is not doing well. I knew a hospital stay of only a couple days would not be enough for this type of procedure.

Being so far away you will have to trust her medical professionals to do the best they can for her. If at all possible someone needs to go to her so they can speak for her and watch over her. It needs to be someone who is attentive and will speak up, someone who will stay by her side. What you have described really does sound pretty common with having a mandibulectomy. I was in a medically induced coma for 3 weeks but I had complications with the transferred skin so my case was much different. I wouldnt be surprised to see a patient spending 5 days in ICU before being moved to the regular section of a hospital.

Thanks Christine. I think they are in denial about the entire process. I think I am more realistic since I lost my mother to a stroke in 2006. My mother's sister lied to me and told me that she was not doing well. I only knew the truth my our pastor in church called me and urged me to go home. You see people are painting a pretty picture for them. Always saying she is moving to a regular room. She is not on a ventilator / respirator. My husband and I are going to visit family due to my Papa since he needs his overdue full annual exam.

I appreciate all the thoughts, prayers and concern. I will keep you posted, hopefully more news tomorrow early morning.

Ina

October 12 Update:


"Mom and dad said She's not on the ventilator anymore, but she is still receiving oxygen. She had been receiving 100% oxygen before, and now they have already been able to lower it to 24% only now. They're weaning it down slowly.

Maybe you can explain exactly what that means? Mom is a little confused between which is the ventilator and how she's being given oxygen. Tita Josie's nose is already free (nothing attached there anymore), but she still has the tube to her mouth, which I am assuming is how she's being given oxygen.

Her kidneys are ok, and mom said her attending physician said her blood count is ok already, so no more need for additional blood transfusion. Mom said they are waiting for the pulmonologist to give the go signal as to whether she can be transferred to a regular room."

Thanks to all your concern.... Ina

Hello Ina, sorry to hear of your Mother-in laws diagnosis and surgery.
A ventilator/respirator is a machine that breathes for the patient when they are unable to do so themselves. Either because they are sedated/unconcious or they have muscle paralysis.Usually after an operation it is because they are sedated.
It is normal for the oxygen to be weaned according to the patients oxygen saturations - this is a measurement of the percentage of oxygen in the blood. Depending on chronic lung problems the patient may have, anything over about 95% is good.
You and I breathe in atmospheric oxygen which is 21% so your Mother -in-law having 24% O2 is about back to normal.
You say she has a tube in her mouth? This could be the endotracheal tube that was used to ventilate her and they could well leave this in place, but not attached to the ventilator ,until they are confident that there is no longer any throat swelling. It would be normal to attach oxygen to this oral endotracheal tube. Did she not have a tracheostomy?
Once the endotracheal tube is removed she would be able to move to a regular room.
Hope this helps. Sounds like she is doing okay.
Tammy

Joyce is doing well post surgery.

Update as of October 13 from a relative:

"Joyce is completely awake. The mouth tube is gone, but her tongue is still a bit swollen so she can't speak well, so she writes things down instead. She seemed to be breathing normally already when I was in her room. I think she's receiving her food via the IV (dextrose?) since she isn't eating or taking fluids by mouth yet. From I heard this afternoon, they expect her to be transferred to a regular room by Monday, and might be able to go home Tuesday or Wednesday. I am wondering if the doctors will come to the hospital tomorrow which is a Sunday. If they do, I guess there's a chance she'll be allowed to move to a regular room tomorrow."

Great news!!!

Good grief. Your patience is very impressive!! I would be nuts by now!!
Glad to hear things have calmed down a bit. Thanks for the updates.
Kathy

Good evening everybody!! We just got an update that Joyce is doing so well. She can now sit up and write down what she wishes. She hopes to be moved to a regular room today (Sunday morning there). She is still in so much pain and she told my father-in-law that she is not physically ready to go home. We assume by mid-week she will be allowed to go home.

Thank you again. Ina


BTW: After surgery how many weeks does it take before they start the radiation therapy? Is radiation more bearable than chemotherapy? Hope Joyce gains weight before that. We were told she has not been eating solid food since March 2010.

m sure you are very relieved that Joyce has begun to come around after the surgery. So glad she is doing better!!!!

Here in the US radiation will usually begin 6 - 8 weeks after surgery.

For oral cancer chemo enhances the radiation. Some patients only get radiation while others get both. To get thru radiation she will need to take in 2500 calories and 48 oz of water every single day. She will also need a caregiver to take care of her and watch her intake, medications, take her to treatments, etc. Hope she will have a very good support system in place for the next phase of her treatment as she will really need alot of help.