Update on daughter. 9 weeks from global anoxic brain injury. Still on the rollercoaster.

[Parapp]

Hi all, not posted for a while but wanted to come on and give an update on my daughter after 9 weeks.

She is still classed as pdoc and is unresponsive but is still with us and fighting. She is making eye contact and they have seen some tracking to sound and pictures but only slightly and not consistent. She does not move at all except what they describe as reflex movements in her arms but the other day she started to have spasms in her legs whenever her foot or ankle is stroked or massaged. Doctors say this may be involuntary but do note that it is in response to touch so they won't comment on what it may be but they have ruled out seizures.

They stopped one of her seizure medications a few weeks ago but she started having seizures again so has now been put back onto it and they seem under control again. Recently there has been a lot of concern over her heart rate as it is constantly high ( over 130-140) and they have done multiple tests to rule out infections and other causes but cant find any. They are now saying that they feel it is due to damage to her brain stem and ( not sure if it is spelt right) vagus may be malfunctioning. They dont say if this is something to be concerned about and just say that as she is young they do not feel it is a problem at the moment. She also drops oxygen levels and has apnea when sleeping and they say this is related to it aswell.

She is still waiting to have a peg fitted and still on the ng feed and they say there is a long wait for it to be fitted but it is a concern as they have mentioned they would have to go to court to get it removed if she gets one fitted.

She is awake a lot more now and definately appears to look at people and to be able to hear them. Her pupils are still dilated but a recent assessment noted that they have now begun sluggishly responding to light which they have not done before. We see small changes in her and signs of some awareness but doctors are dismissive of it. She has appeared to be in pain a lot recently and they have put her onto oramorph and codeine to help with this.

We are keeping hope and she has fought so well and already gotten further than they have thought many times. It is so hard to relax though and to get to a place where i am not constantly worrying that she will deteriorate rapidly or that i will get a call that she has passed even though nurses tell me they will let me know if anything serious happens, several times she has had problems and they have not called me and with her having a dnar on her i am worried everytime i see her that it may be the last time. I am trying to get myself out of the constant state of panic and anxiety but it is hard but i also need to try and find a new normal routine and way of life for my other children and for my own health.

Thank you for all of your support and messages on my previous posts, it really does mean a lot to know that i am not alone.

[Hidden]

Dear Parapp,

You are amazing and strong even though you may not feel as if you are - it is an extremely traumatic situation you are having to deal with 🙏 thinking of you and your family 💕

[Skallagrigg]

Hugs

[Pairofboots]

Hi Parapp, some of what you say does ring true with what you have been told. It is probably impossible for you to not worry. I don't know what support you have. Headway can offer you support, consider contacting them. Contact details are pinned to this page. 🍀

[Alibongo60]

You are not alone parapp,we are here with you following every step and willing your girl on, she has put on such a brave fight so far, with you beside her every way, stay strong, sending you both lots of love Alice xx

[Leaf100]

Hi Parapp,It is sure is one huge roller coaster to be on (understatement of the decade).

I agree with Pairofboots - contacting Headway is a great idea, not just for information and resources for your daughter, but for yourself. This tragic situation has a huge impact on you, too. You also need support, coping skills, help sleeping and scheduling,etc.

Big hug to you.

Leaf

[Nanapal]

Hi Parapp, my heart aches for you as I can relate to the distress you are going through. Not knowing what each day might throw at you is so hard to deal with - but you obviously have a very strong daughter who is continuing to battle.

Our son went through several months of not being able to control his body temperature -hypothalamus not functioning correctly due to brain injury. He would constantly sweat even with window open, fan on and no clothes on - just cotton sheet over him ( this was during the colder months), then it lessoned and now it doesn’t happen at all.

Please look after yourself as this is physically and emotionally draining ( I don’t have added family responsibilities or work to deal with like you but still struggle) - accept any help you are offered from what ever source.

I am sending my very best wishes to your daughter, you and your family - keep strong together and don’t give up hope for improvements. Take care Nanapal. x