Update after tracheostomy removal and difficult week

[Parapp]

Hi all. Sorry not been on for a while but really struggled this week riding a rollercoaster of emotions.

My daughter had her tracheostomy removed on Thursday 12/08/2021 and appeared to be doing well for a few days afterwards although she was more sleepy that usual and there was less eye opening. On Sunday 15/08/2021 i visited and she looked extremely ill. Her vitals they said were unstable with a temp of 39 and heart rate of 160. Oxygen was also dropping fast. They said they felt she had an infection and started giving her antibiotics. On the monday we were taken for a meeting with the consultant who told us that they felt she was deteriorating fast and due to making the decision to not reventilate her they felt that the next 24-48 hrs were critical and that they felt she would develop pnuemonia and not survive and that we should prepare ourselves. They even commented that maybe they removed the trach too early. They allowed us to visit anytime we wanted and spend as much time there as possible.

After the 48 hrs she appeared to be doing well, her temp came down and they said she was stable again and on Wednesday they moved her to the neuro high dependancy ward and i was told i could have 2 1 hr visits a week, i asked about what we had been told on the Monday and nobody seemed to know what was happening. Just told us that she would not have been moved if she was not stable. My head is all over the place as i was in a mess expecting the worst on monday and now feel confused over what has happened. We have not spoken to any doctors since monday and nobody even mentions the infection anymore even though she still has a wheeze and cough.

We have been told that they want a meeting with us next week to discuss giving her a peg feeding tube which is filling me with anxiety as doctors have been speaking to other people about what our daughter would want. I am taking it as a huge positive that she did so well fighting off the infection and moving but on monday a doctor did comment that she will probably just get infection after infection if she survives and it will be a constant rollercoaster. Speaking to some doctors and nurses it is though they have given up and they just say that the scans and eeg show she is not the same but they dont explain it more than that to us and we still feel it is too early to give up on her.

[Alibongo60]

Hello parapp, what a struggle your girl and yourself are going through, she is obviously very strong and not ready for giving up on life just yet. I think it is very unfair of the doctors not to explain their procedures and intentions to you and you are quite within your rights to ask if you don’t understand. If they are discussing a peg tube it doesn’t sound like they are giving up on her, and will want to know how you feel about it, always ask, think they forget we haven’t all gone to medical school. Stay strong and lots of luck and love Alice xx

[cat3]

So sorry Parapp to hear of your girl's setbacks and lack of support from hospital staff. Have you considered asking PALS to speak on your behalf to senior staff. We found them amazingly effective (and diplomatic) when they intervened to speak up for my son's partner after poor treatment.

Do whatever you have to do P to get answers ; no apologies..

Sending love & hugs, Cat x

[Hidden]

Dear Parapp, my heart goes out to you and your daughter and family. I too would push for more answers and clearer explanations from the doctors. Sending you lots of love xoxo

[Skallagrigg]

Omg you must be all over the place emotionally, I hope it all gets explained properly to you soon x

[Dogsabighelp]

i am reading this and am fuming.p you must take control now.i know its hard but you have to.get in touch with hospital pals team,give them as much info as you can names etc.tell them you are not happy with lack of info.explain that you are confused as to what you are being told.i understand how hard it is there are many in this group that are dealing with similar situations i am happy to speak with you any time.in my experience as soon as you start shouting they start to listen...stay strong be strong for your girl she needs youxxx

[ored13]

😤. What is with these hospitals. You would like some consistency. Can you get an advocate involved so that they can help and speak on your behalf? Maybe time to start phoning 3 times a day for an update and also find out when handover is etc. We did the same with my husband and eventually got to know which nurses have the best info. The doctors will be a bit... straightforward. But the nurses have a different attitude because they spend the most time with their patients. And some are nice and will take the time and others are brusque. The neuro ward will be really good for her and yourself. Just ask a few questions at just at handover or once the team has been on for an hour or is maybe going off in the next hour. Ask when is a good time to call. I remember my sister in law constantly asking about inflammatory markers after we had been told about the aspiration pni which he has twice. The second time they only really noticed because we asked and that lead to them discovering a clot after x-ray etc.

It's a bit of a strange game with different stages and phases. You may be in the friendly, accommodating not pain in the neck stage. But they have to know that you're present and also that you're not going to flip your lid all the time. Considerate, a few key questions and "thank you what does that mean? Fantastic thanks. Is there any way I could maybe speak to her on speakerphone for a few minutes when there is time for the staff?". It's not manipulation really it's just seeing it from their perspective for now. And I mean for now.

Time time time and more time?

Maybe get a HATS nurse involved to give you some questions to ask or that they can maybe interpret for you? I found we needed to record meetings on audio only that we could run through it. This was a suggestion from a friend who was a nursing sister for years.

Such a bloody hard road. Don't let them railroad you into things. And don't let those flyaway statements that they make get you down. I was told by a medical professional the other day that at times in the hospital's they forget that they are not just treating a lung or a leg, but a person with personality, family etc.

Hopefully this coming week will be a better one.

[Hidden]

Hello I’m so sorry to hear of the continuing trauma you and your daughter are experiencing. My son had a similar experience. After a serious hypoxic brain injury he spent four weeks in ITU slowly coming out of a coma. Despite all predictions and preparation to remove life support he survived. However, once his tracheostomy was removed he too quickly developed an infection and we did join a rollercoaster of infections over some months. We were brutally told that he would die of pneumonia. However, I now see the picture more clearly and I hope it helps you.

He had a PEG fitted and unfortunately it took consultants four weeks to realise the infections were caused by him aspirating the feed ( or smoothies as we like to call them). He was eventually fitted with a JEG. I have an official complaint in about this.

He was eventually moved to HDU where he spent more weeks. He suffered the torment of nasal suctioning until they eventually fitted a second tracheostomy. With hind sight I think it was removed too soon. He is now in a specialist neuro rehab ward where they have a programme of gradually weaning him off the tracheostomy at this pace. He has been there just four weeks and the type and frequency of physio he has had helped improve his breathing and reduce or we hope remove infections.

For me my son’s brain injury and his care has been a total initiation by fire. With the benefit of hindsight I should have insisted T have a second tracheostomy much sooner. He also improved infection wise when he was seen by a respiratory consultant rather than the stroke consultants and ITU doctors who were treating him. My heart goes out to you and your family. I hope I have provided some help. Like your daughter my son is strong and clearly wants to live. We have had at least three ‘end of life’ visits but he fights on. We have a long way to go but I do feel his chest is much more under control and not such a threat to his survival. With genuine love and best wishes to you.