My Journey

Leah isn’t so well today and her oxygen requirements have increased again. They have sedated her fully in order to reduce her body’s need for oxygen and to keep her comfortable and relaxed. The doctors are worried about her medical condition but they don’t believe that her life is in immediate danger. Her condition isn’t stable enough to have a CT scan as it entails leaving the ICU unit and…

I arrived at ICU this morning at 9.50am & I wasn’t allowed in because of doctor’s rounds so I had to sit on the chairs in the corridor outside ICU for TWO HOURS wondering why they wouldn’t let me in. Leah is in a side room & I have never before been kept outside for as long as two hours because of doctors rounds. When a relative of another patient arrived at 11.40 & asked how Leah was & I…

The lovely Cork Dr is looking after us today. Leah is quite sedated but responds when I speak to her. The Doc says that Leah’s kidney & liver function are slightly improved today. Her haemoglobin is back up to what it was on admission – last week they had to give her three blood transfusions because her haemoglobin kept dropping. He says that everything else has remained the same. He then…

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…

Today’s ICU consultant finally condescended to speak to me @ 6pm & I’m not convinced that I was much wiser afterwards but at 6.30pm along came a knight in shining armour – our very own lovely haematology consultant who has been off since last Thursday. He proceeded to spend a half an hour with me having a full & frank two way conversation. As the Docs are now inclined to think that Leah’s lung…

Leah is through the procedure and appears to have suffered no ill effects & her oxygen requirements have not increased – she will be kept fully sedated for another while. I very much appreciate everyone’s prayer support thank you.  

Today Leah is medically more or less in the same place as yesterday. The samples that were taken from her lungs on Thursday and were sent to the laboratory haven’t grown anything, so this confuses the PCP diagnosis a little bit and has led some of the docs to suspect that Leah may have pneumonitis, another complication of transplant. It’s not one I fully understand but I think it could be a…

Visitors are not allowed to take photos in ICU but Leah took this “selfie” this morning. She is very awake but comfortable & making very determined efforts to communicate via her iPad but it’s complicated by the fact that the muscle relaxants have made her vision a bit blurry. She says that being on the ventilator is easier than when she was struggling to breathe. Leah’s oxygen levels have…

Leah was fully sedated & unconscious last night so I slept in a nice room in the Cancer Centre beside the main hospital. Doc says that Leah made some progress during the night & they have been able to turn down her oxygen a bit which is good news. They have temporarily reduced her sedation so that she is awake for a while this morning. She was allowed some Polly Pineapple ice pop which she…

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…

This morning the ICU consultant was 95% sure that Leah would need to go on a ventilator but said that he would monitor her condition for another hour. However Leah’s condition has stabilised again thankfully. Her oxygen levels and breathing have improved a little. This has enabled them to swap her cpap face mask for nasal prongs for part of the time. This is a little more comfortable for Leah…

Leah’s breathing is a little bit easier since this morning & her blood oxygen levels are a little more stable which is great, although she is of course still seriously ill. Heard today from the Dr that the CT scan of her lungs on Friday showed that she has a wedge compression fracture of her spine between T6 & T8 – NOT a “tiny fracture of one of the small bones” as was reported from the X-ray a…

I am very much appreciating everyone’s prayers & words of encouragement thank you. Leah’s breathing is currently being assisted by something called “non invasive cpap“. Drs have told us that a ventilator may eventually become necessary. So far there has not been a significant response to the various treatments being used and this is worrying. Leah’s own immune system also needs to be able to…

Written sitting in corridor outside ICU Leah continued to find breathing difficult and has now been transferred to the Intensive Care Unit. Nic & I are in the relatives waiting area & have been told that it will be 30 or 40 minutes before we’re allowed to see her. I’m not used to being separated from Leah when she’s ill and I’m finding it very difficult – I feel that my role as a mother is to be…

Written in the Cancer Centre. Leah’s chest infection has been confirmed as PCP – a type of pneumonia that only occurs in people who are immunocompromised.  She’s on continuos oxygen and is on intravenous antibiotics and is back on steroids and is being regularly reviewed by her own Dr and by the ICU Dr in case she needs more intensive support. If her condition stabilises our Dr hopes to be…

Tonight was to be Leah’s first time attending a big family get together since her bone marrow transplant – she’s day 179 post transplant. The Dr told us a few weeks ago that her lymphocytes were on the rise & were out of the “danger zone”. Leah was a bit short of breath when climbing the stairs yesterday but her temperature was normal & she was otherwise well so we decided to wait and mention…

“This won’t affect your fertility” I was still groggy from the anaesthetic and doped from morphine but these were very welcome words from Dr Martin, our consultant gynaecologist. He had just removed a gangrenous ovary and fallopian tube from my left side. Rachel, our only child at the time, was 18 months old. By the time Rachel was 2 years old there was still no sign of a brother or sister for…