Update on my mom- Red Cap

[Livinglifeachday]

Hi everyone. I wanted to provide a quick update on my mom. My mother was admitted to the hospital back in July 24, 2020 due to covid, placed on ventilator the following day, and spent the following 8 months connected to a ventilator. After constant up's and downs in her health, she was finally disconnected from the vent on March 1, 2021 and on hi-flow thru the trachy. Started speech therapy and tolerated the PMV fairly well. She has been getting stronger each day and is able to walk!

On April 1, 2021 she was transferred to a subacute facility for further weaning and potential decannulation. She has been making so much progress since she was transferred out from the horrible hospital she was in. After nearly 9 months she had her first solid meal (chicken enchiladas) after successfully passing the swallowing test. She is no longer on peg tub feedings, had her first real shower, and has been downsized on her trach from a 6mm XL to a 6mm regular size, and once more to a 4mm. I'm amazed at how well she has been tolerating every step of the process.

After a few days of tolerating the PMV for hours with minimal to no suctioning needed, my mother was finally red capped. She was red capped yesterday April 21, 2021 at around 5:30pm. I did request that at least for the first day or so she receive some oxygen through the nose out of precaution. It has been about 15 hours and mom is going strong on the red cap. We continue to get closer to having mom come back home and I cannot hold in the excitement, but also feel anxiety and fear at the same time. Is this all normal to feel?

If all goes well, my mom could be decannulated sometime this weekend or early next week. We will have to see what the pulmonologist recommends.

[LeopardGecko]

This sounds like fantastic news. I'm so pleased for you and your family 🙂

I think the anxious feeling is normal. At every major step of my husband's recovery, I would always feel a bit anxious. I think because we know how sick and vulnerable they were, it's hard not to feel anxious about each step forward especially when things like oxygen are stopped or when they are sent home and are coping without any medical experts to keep an eye on them. I'm sure your anxiety will get better as your mum continues to get better xx

[Livinglifeachday in reply to LeopardGecko]

Thank you. Yes, I'm a little nervous knowing that she is getting close to coming home and won't have have medical staff 24/7, but I rather have her home with her loved ones!

[Color27]

I have been following your story since our moms were going through the same things around the same time. Unfortunately my mom didn't make it. We might not have more time here on earth but I believe that I will get to see her again someday. I just want to say I am so genuinely happy for you and your family. Praying for her continued healing and hopefully she can reunite with you all soon.

[Livinglifeachday in reply to Color27]

I am so sorry for your loss. Although she is no longer on this earth, she will always continue to be alive through memories. She is now an angel looking over you and your family. Stay strong. Sending you a big hug.

[Beanyynwa]

Delighted to hear that your Mum is making progress. In my experience of my sister being in ICU on ventilator for 50 days, anxiety and fear are normal part of the process and journey. Praying for your Mum's continued progress and recovery 🤗🙏🏼❤

[Livinglifeachday in reply to Beanyynwa]

Thank you! Did your mum have a tracheostomy? If she did, when she was decannulated, did she feel like she needed oxygen initially? I don't know what to expect when she gets decannulated.

[Sepsur]

What a long long journey. I hope it all goes well this weekend.

[Livinglifeachday in reply to Sepsur]

I hope so too. She is going on 2 days with the red cap! Pulmonologist gave me an update, said that clinically she has improved a lot and mom is scheduled to get decannulated on Tuesday if everything continues to go well.

[holdtheprozac]

That's fantastic news! And I know how you feel - I was in ICU on a vent for a month and when I came home my daughter looked after me and we were both concerned about the oxygen levels. I bought an oxygen monitor (one of those you clasp on your finger) from a local pharmacy and found that being able to check my oxygen levels calmed us both a lot. Also, I was always able to bring up my oxygen levels by slowly breathing in for 4 and out for 8 (or whatever she can handle - 2 x longer breathing out slowly). It was 6 weeks before I felt well enough to stop using it. Anyway, I hope that helps you both. Take care and best wishes xx

[Mijmijkey74 in reply to holdtheprozac]

I do the same breathing technique as you. Though brittle asthmatic l am not on oxygen but do have a spo2 finger tip pulse oxi meter and breathing like that does bring blood oxygen levels back up. A very helpful little machine worth every household having. Could save a life. Prevent hypoxia, racing or or to low pulse rates. Indicator towards high/low bp too. I also have a bp cuff machine. Can monitor own health at home more easily and at more relaxed ease and rest.

[Ren2985]

Wonderful news!! Every success is a blessing. Very normal to feel anxiety, it will be part of you for awhile, but you will have to learn how to cope

[Mijmijkey74]

I had found another post about your Mum by you and came to your profile to check for update. I am so please for your Mum's progress and for you to have yoyr Mum who clearly has a fighting survival soul and spirit and real grit too. It must have been and still be if your Mum is still in hospital a vesy scary anxious uncertain worrying and stressful time. You both deserve medals or flowers. Hope your Mum is back home, had no more setbacks and you are both just unwinding and hugging eachother more than ever before. What a very long uncertain journey for you both it has been. Can l ask the age of your Mum. The more elderly have the most grit and fighting power of all other ages l believe, hardy, fought many battles already and won moreso than younger people who have often pampered lives in comparrison to what more elderly/older parents and grandparents had at youunger age. Captain Tom springs to mind for never giving up. Fantastic news and mmay your Mum go from strength to strength only.

[lynnmarr]

This is the 7th month my husband has been trached on ventilator. He also has muscle athropy. He only has 40% of lung usage due to fibrosis in his lungs. Doctor is saying he can't wean him. The only thing which might work is if he can get his muscles moving which might increase lung usage? We're you ever told that they couldn't wean your mom from ventilator?

[Livinglifeachday in reply to lynnmarr]

My mother has been left with a lot of fibrosis on her lungs, we do not know what her lung capacity is at the moment until we have a follow up with her pulmonary doctor. Up until a few months ago, we were told that my mother was going to be vent dependent and weaning would be discontinued. We refused to accept that outcome given the history of the hospital she was in. We fought until an RT was actually willing to take her of vent and put her on hi-flow oxygen given her vitals were good (at least to trial her) She tolerated it fairly well and at month 8 she was officially off ventilator. She was then transferred to a subacute facility. Doctors and staff were able to advance her so much in a period of 1 month. Se was downsized her trach 3 times, started eating, walking, and she was decannulated. Something that the previous hospital was not willing to do because according to them, she would never be able to come off the machine so why try. Well she proved them wrong, and as of May 7th, she was discharged home after 9.5 months in several hospitals/facilities. She did get discharged with nasal cannula oxygen out of precaution and because she still needed some. We are going to see what pulmonologist says in her follow up.

Some patients just need time, that is what they kept telling us. We tried taking it one day at a time. Also, keep pushing and being an advocate for your husband, ask questions, do research on what else can be done.

Stay strong, I know how hard it can be when doctors give you little hope. We never lost faith, god willing, your husband will come out of this as well.