nursing care – My Journey:

I just want to clear up some misunderstandings that may arise from some of my previous posts; the fact that none of the samples from Leah’s lungs have ever grown any bugs is not actually good news – a lung infection in a post transplant patient is potentially easier to treat than inflammation.

Inflammation of the lungs is called PNEUMONITIS and I’m told that in Leah’s case it’s likely to be an immune reaction similar to the graft vs host disease that she had in September only way more serious. This type of immune reaction in the lungs is not to be welcomed.

Also, although I complain about the personalities of the doctors, I have no issue whatsoever with their medical expertise. I am very confident that they have my daughter’s best interests at heart and they are very vigilant about checking on her medical condition many times a day.

Even consultants not on duty in ICU that day will pop in just to see how she is doing & there are many in depth discussions amongst the medical team about her treatment plan.

Again, although I bemoan the lack of facilities for parents (or for any visitors in ICU) this is no reflection on the staff. The nurses are all extremely kind and caring and are very good at what they do & they show concern for my well-being as well as for Leah’s.

Nurses & some doctors have made various adjustments in order to make our lives here more bearable, within the confines of hospital policies and procedures.

Any negativity I have expressed about Belfast City Hospital is mainly as a result of Leah & I having spent 14 weeks receiving care at Bristol Children’s Hospital which is totally geared towards meeting the needs of families.

The move from a top class Children’s Hospital with a purpose built adolescent unit, to a very old hospital that is not used to accommodating the needs of young people and their parents has been a huge shock to my system.

However the medical expertise & nursing care here is excellent and I certainly wouldn’t want to give anyone the wrong impression in that respect.

Doc says that there has been no further deterioration in Leah’s medical condition & some tests today show a slight improvement. Docs here have been in contact with her consultant in Bristol to get guidance from there also.

This is the third hospital where Leah has been treated as an inpatient this past year. Every hospital is so different & each one excels in different ways.

The ICU @ BCH is part of an old building and has no facilities for relatives, not even a toilet or shower. All the other patients are elderly & I am usually the only relative here outside designated visiting hours.

I think that initially the staff found my constant presence something of a surprise & I was repeatedly asked “Are you staying??” & my answer didn’t vary.

They have now got used to me being here although I haven’t got used to being regularly asked to leave the room so that the staff can “work” with Leah as in Bristol this never happened even once!

However the standard of nursing care is excellent & they have gone to great lengths to make things more comfortable for me during the night & have found somewhere within the hospital where I can have a shower in the morning – as I’ve said before “kindness transcends physical environment”.