ggers!! Welcome and thanks for joining us, hope you are all well.
We continue to write from Royal Manchester Children's Hospital and we began the day with the possibility we may be heading home today. However, it hasn't disapppointed us and turned out to be a really busy and enjoyable day here. Along with all the regular Monday routines, Phoebe has had a number of visitors today, Layla her teacher and Becka our music therapist spent time here and she was very enthusiastic today!!!
Fr David Egan who is one of the chaplains here popped by to see us, we have received great support from the chaplain team here who pop on us every few days and join us for a brew!
Monday's are a fairly busy day, today we change Phoebe's dressing on her Hickman site and take regular swabs, this can be a little upsetting for her but today she coped really well. Phoebe has said she's not disappointed at all in not going home, in fact she said she liked being here and enjoys people coming to see her!!!
After bloods were taken this morning and we had made a start on the packing, Ade chatted with our other consultant Denise who felt she would like us to stay just until we have 0.5 on the report for neutrophils, these are a type of white blood cell and its important that we build these up before heading home.
As w
e are reminded, this is a process and there may be times after discharge and clinic appointments where we need to stay again should Phoebe require any further supportive treatment.During the ward round this morning, Denise was thrilled to see how Phoebe is coping and is pleased she looks so well. Denise pointed out lots of facts of how and why Phoebe has done so well throughout her transplant, particularly due to having only a couple of blood and platelet transfusions and managing to keep infections at bay. Blood results show gradual improvement each day and everything is working as expected which is amazing!!
Everyone has been extremely mindful to do everything we can to help avoid cross infection and thanks for your question Denise regarding the wonderful aprons!! There is continuous research into barrier nursing and infection control and by using the apron and gloves has proved to reduce the rate of cross contamination. We carry bugs on our clothes too and by entering the cubicle with a clean barrier each time this helps to prevent anything being passed on to the patient.
I have spent time with the nurses this evening discussing your question Denise and it is so interesting to hear the stories about how things have changed over the years. Rob once told us of when he was first working on the Transplant Unit back in Pendlebury, each time you entered the unit it was necessary to shower each time and wear specific garments...how times have changed!
We continue to take each day by day. Phoebe has done remarkable with her medicines and continues to refuse the tube...I like that about her, she has got some fire in her belly this one!!!...and I will continue giving her my strength to deal with this until she decides different. Appetite has been better, thank goodness for those extra couple of kilo's during the steroids, they are helping her now. This will all settle better once we are at home and feeling more relaxed in her comfortable surroundings.
We understand there are many of you out there who are reading the blog and we haven't even met!! Tonight I was reminded of this by our lovely nurses whilst chatting at the nursing station. Charlotte, who is a wonderful nurse here even told me her Mum is even following the blog...so a special hello to you too and thanks for keeping up to date with Phoebe's Journey, Charlotte and all the nurses and staff are doing some amazing work here...true angels.
I believe
that every thought, prayer, letter, text, email or visit to Phoebe carries with it a special energy that has helped her to heal and with so many of you out there, you have all played your part in helping the healing process. So, thankyou to each of you who tune in or contact us each day, we are truly humbled. Aaah seems like a good place to finish tonight, we look forward to a new day and a possible journey home...
Rest easy folks,
Much Love
Lynn, Ade, Phoebe and Spirit Eleanor xxxx
3 comments:
Hello you lovely people!
I'll say Phoebe has some fire in her belly! Holy moly, she is incredible!! I can't believe how she copes with those meds, brought tears to my eyes reading Sunday's blog entry, poor little lamb and poor you and Ade too. You are both caught between a rock and a hard place making that decision, but as you say, it has to be done. Stay strong guys:)
That's so interesting about the aprons (never occurred to me that germs could be transported on clothes - but why not?!) and how much time has changed things. I had an ex-boyf who was a doctor and I do remember some hooplah about showers and certain clothes in certain areas now I come to think about it.
Hope you guys have a great day today. You're so right about how all the love, emails, letters, texts and prayers carry an energy that helps Phoebe; I think it also helps you guys stay strong for her too, knowing how supported you all are:)
TONS of love to you all!
Denxxxxxxxxxxxxxxxxxxxxxx
Hello our dear friends...Phoebe looks incredible on the photos and she carries an amazing spirit..a bit of you both and much of her own too! I can't wait to be able to see her again and have a good ole chin wag!! Although it might not seem like it ALL the time, between you all, you seem to be able to find your way around the difficulties...you all are a real inspiration! Love you all and look forward to seeing you home when the time is right! Lots of Love and positive energies your way Helen and the Hilderstone Massive!
i was told a few years ago, that those patients with that "fire in their belly" do the best with all they encounter. i don't doubt it. and i am sending every bit of positive light and love to you all. (love when you post pics of phoebe--she is certainly a little star) my boys have begun to ask about her each evening. :)
xoxo
deborah
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