Hello- Kim again!!
Just to let everyone know that following the previous post Kerry has continued to have an eventful week.
As mentioned previously, Kerry was to be admitted to the Brompton Hospital on Thursday and this she was (following a couple of slightly better nights sleep on the Tues and Wed). They have acknowledged Kerry’s discomfort and have helped to make her more comfy and the main problem is her carbon dioxide levels, which they have been trying to bring down with the bi-pap machine. She has also been put on a nose feeding tube as a final push to get her weight as high as possible before surgery.
Whilst in the Brompton hospital she has also been fortunate to speak with Mr Simon, the top surgeon from Harefield who has said that they are still confident that they will help her in time however obviously they can’t guarantee what organs come up and when. A further development was that an x-ray came back showing she has some fractures in her rib- no wonder she’s been in so much pain!! Just shows again how incredibly brave and tolerant she is!
She has now been taken off the Transplant waiting list and red flagged as urgent at the top of the list. Kerry told me that she is sleeping better and the doctors/nurses are being really thorough and helpful. Mr Simon has confirmed that she is number 1 waiting for the set organs so if these come up, they will be hers!
Using Kerry’s words- unfortunately the time has come to acknowledge that things are really serious and she is at the end stage of this illness. While we all remain hopeful for a successful transplant soon things are not easy waiting and we may not have lots of time. They have told me that they have some intensive care options that may be available as a bridge to transplant if things get worse, which is reassuring. These are only very temporary options but may well buy us valuable time.
Dad has also told how incredibly brave she has/is being (as always).
She would like to again thank everyone for their texts/emails/wishes/prayers and fingers crossed I will be posting shortly that Kerry has new lungs!!
We are not sure on the plan for home at the moment, they have said they will play it by ear next week. It’s just a case of getting stabilised on a good bi pap level. Kerry is having a sleep study on Sunday night which will monitor the carbon dioxide levels continuously throughout the night. Blood gas tests this morning showed her levels had come down slightly already.
Phil is over with Kerry this weekend and is, as usual, looking after her 🙂 She was very pleased to see him today after nearly 2 weeks apart.
Love Kim xx