We have to see the bigger picture

On the 4th March 1969 Horace’s older brother David had his 15th birthday and became seriously unwell. This resulted in him having an appendicectomy and being diagnosed with a “progressive malignant tumour“. David was subsequently admitted to St Luke’s Hospital in Dublin and prayer was going up for his healing all over the world. Someone said “heaven is stormed with prayer”. Horace’s mother Charlotte stayed up in Dublin to be with David.

On the 17th July 1969 Horace’s mum read to David from Psalm 65, they prayed together and then he kissed her goodnight. At 5am the next morning David went to be with Jesus.

Charlotte said that “although grief-stricken, a great peace passed over me, the Peace that passeth all understanding – God had taken him home and now he was free from all his pain.”

Two years later Charlotte developed breast cancer. She went to be with Jesus on the 16th December 1982. Thankfully Charlotte wrote about some of these experiences in a little booklet that she called “Stepping Stones“. I have read and reread this booklet many times over the years. Leah also found it comforting to read. During Leah’s illness I took to carrying a copy in my handbag.

On Saturday 11th January ’14, for the first time since Leah’s admission to ICU the doctor told me that Leah’s chest X-ray showed a slight improvement. They had been telling me all along that Leah was unlikely to recover, but there were thousands of people all over the world praying for healing for Leah and I was hopeful. When I heard this positive news about Leah’s chest X-ray I was so sure that this was the miracle starting to happen and I was so happy – our little girl was getting better – she was going to live.

The next day when I went in to see Leah her condition had worsened and my heart sank. That evening I sat by Leah’s bedside, held her hand and reread Charlotte’s wee book. I read how heaven was stormed with prayer for healing for Horace’s brother David, but yet God chose to take him. I read these words written by Horace’s mother “This has cost me a lot to write but I believe it is what my Father wants me to do, hoping that it will help someone. By the way those four and a half months taught me many things. David and I grew very dear to each other. God is not only our Father, He is also a wonderful teacher and trusting in Him all must be well.”

There as I held Leah’s hand and listened to the swish of the ventilator pushing air into her lungs I silently prayed and asked God an almost rhetorical question “Lord, you aren’t going to heal Leah are you?”

The next day the deterioration in Leah’s medical condition continued. At midday Leah had to be anaesthetised to conserve her oxygen levels. My sister in law Hannah unexpectedly paid me a visit. As we sat talking outside ICU Hannah looked me in the eye and said “What’s your gut feeling about Leah?” In that moment I had to face the truth. I whispered the words “I think Leah’s going to die.” Hannah put her arms around me and prayed with me.

This wasn’t me admitting defeat or giving up – this was a moment of acceptance. This was the moment when I moved from giving Leah the best possible quality of life, to being able to ensure that Leah had the best possible end of life care. I thank God for everyone He sent to help us along the way.

When Leah was diagnosed she said “God has a plan for my life” and “we have to see the bigger picture” – I think that “bigger picture” was bigger than even she could ever have realised.

I’m so glad that we were able to have Christmas together

Thursday 26 Dec ’13 had that lovely after Christmas relaxed feel to it.

I had been a little concerned about Leah earlier in the day because she seemed a bit breathless.

I had checked her temperature with two different thermometers and both had given a normal reading.

Leah had got a Nintendo Wii for Christmas and now she and her younger sister were down in Leah’s room playing on the Wii, laughing and carrying on.

Sounded very reassuring.

Later in the evening Leah came up and proceeded to cook one of her specialties for herself and her sister – a yummy cheese omelette.

I was glad to see there was nothing wrong with her appetite.

Friday morning @ 8.30am as per usual, we set off on our 140 mile round trip for the Bridgewater Suite at Belfast City Hospital.

Leah’s older sister Rachel accompanied us.

The only difference on this occasion was that Leah was booked for an ultrasound of her abdomen and pelvis at 10.50am.

This meant she wasn’t allowed any breakfast but she needed to drink a significant quantity of clear fluids approximately one hour beforehand.

Leah settled down to doze in the car with her earphones in her ears, listening to music.

She asked me to wake her up when it was time to start drinking the water.

I did this, but shortly after she had started drinking, while I was driving on the motorway, Leah started vomiting and it seemed like she wouldn’t stop.

When there was absolutely nothing left in Leah’s stomach, the vomiting stopped.

I kept driving and suggested that the best idea would be to go straight to Rachel’s flat in Belfast where Leah could get cleaned up and borrow some clothes.

We would still be able to get to the hospital in time for her ultrasound, as this test was important.

Thankfully there was very little traffic and we made good time.

At Rachel’s flat, Leah seemed weak and needed me to to help her quite a bit.

She insisted that she wasn’t sick but said that drinking the water too fast had upset her stomach.

We got to the hospital in time and everywhere was so quiet, unlike a normal busy Friday.

We were in and out of the ultrasound dept in no time.

Then I headed in the direction of the cafe to buy the buns that were our usual weekly treat.

Leah didn’t want any buns – this was very unusual – Leah loved her food.

I said that she must be sick but she insisted that she wasn’t and again said that the water had “turned her stomach”.

I reflected silently on the fact that later that day we were scheduled to go to Donegal for our first big family get together since Leah’s bone marrow transplant.

Leah had been looking forward to this event for weeks and would not want ANYTHING to get in the way.

I said nothing – the doctor would decide if Leah was well or otherwise.

On the Bridgewater Suite we had the luxury of a private ensuite room for our day’s visit.

Leah and I chatted & laughed together about this & that.

She looked well, but refused all food when the lunch trolley came round.

I noticed that her breathing was very rapid – I discretely timed it using the big wall clock above her head and noted that her respirations were 40 per minute – not good I thought.

Our consultant came to see us and sent Leah – on foot – for a chest X-ray.

Halfway down the corridor I noticed how breathless she was getting and I was quite shocked and worried.

By the time we had walked back to our room again, an emergency CT scan of her lungs had been ordered and Leah was whisked away in a wheelchair.

I didn’t need to see the scan results to know we were in bother – the shocked expression on our consultant’s face told me that.

He called me over to the computer screen to look at an image of Leah’s lungs “Jeepers, no point showing me.” was my initial reaction but I caught my breath as I looked at the images – Leah was in bother alright – her lungs were filled with “consolidation“…….. as the doctor said “she’s far sicker than she looks“.

By now various other family members had arrived downstairs in the hospital, as some of them had been planning to travel with us to the family party.

Leah’s boyfriend Nic and his Mum Kerry had arrived too on their way back from England.

My head was spinning trying to make sense of who was going where.

Rachel left with my sister and the car. Nic went into Leah. I sat with Kerry as I tried to process all that was happening.

Thankfully I always carried an emergency overnight bag on these occasions.

Leah was admitted to a single room in the Cancer Centre.

I wish they would call it something more imaginative than “The Cancer Centre” – do we have to be reminded of the “C” word all the time?

Eventually Nic & Kerry left too.

Leah and I settled into yet another new environment.

The staff brought me a folding camp bed.

I’m a good sleeper and well used to sleeping in a hospital environment but this times was different – I was too scared to go to sleep.

Never once in 14 weeks in Bristol Children’s Hospital was I scared to go to sleep as I knew that Leah, no matter how ill she was, could give me a dig if she needed me.

This occasion was different, Leah seemed to be deteriorating so fast.

Between 9pm Friday night & 9am Saturday morning the ward staff sent for the doctor on call, on three different occasions, because they were so concerned about Leah’s medical condition – everything was happening too fast.

At 4am Saturday morning Leah was started on oxygen via nasal prongs, but as I lay on my camp bed listening, I couldn’t detect any significant improvement in Leah’s breathing after she started using the oxygen – this wasn’t a good sign.

By morning Leah was too breathless to even walk from her bed to the ensuite facilities in her room.

Later in the morning the ICU team were called to come and assess Leah but they said she wasn’t sick enough to need ICU at that stage.

At midday Nic arrived to spend the day with Leah.

After a while I went to a nearby coffee shop with a friend to give Nic and Leah some space.

A little while later Nic phoned me to say that I needed to come back because Leah had deteriorated further and would shortly be transferred to ICU.

Leah was never again well enough to have a proper conversation that didn’t involve typing on her iPad.

I’m so glad that we were able to have Christmas 2013 together as a family of six.

A time to be born and a time to die

In Bristol Children’s Hospital the cleaning staff always knocked and asked our permission before entering Leah’s room to clean it. If we indicated that it wasn’t a good time they would go away and came back later. If Leah and I were snuggled up together in her hospital bed watching a DVD then the nursing staff often apologized for intruding. Shortly after Leah was admitted to the Bone Marrow Transplant Unit there I was quite taken aback when our very senior haematology consultant even apologized for disturbing us when he came to see Leah!

However once Leah became an adult (i.e. over 16) and was in the adult ICU in Belfast City Hospital, there were times when I felt like the intruder. Now I was the person on the outside knocking and asking permission to enter. I hadn’t changed but the environment had changed, policies and procedures had changed, and my heart was breaking.

In Bristol when Leah was ill I provided all her personal care, showered her, dressed her, changed her bed linen etc. The nurses administered her medication, worked the pumps, nasogastric feeds etc. It never occurred to me that it would be so different when we returned to adult services in N.I..

On Thursday morning 2nd January I could see that Leah’s oxygen levels were dropping and that she was finding it increasingly difficult to breathe. I knew that putting her on a ventilator was the likely next step. I was asked to leave the ICU for doctor’s rounds so I went and had breakfast in the hospital cafe – I liked their warm and frothy cinnamon milk.

Shortly after my return to Leah’s side-room the consultant on duty called me into a separate room. He explained that Leah was critically ill and that they would have to put her on a ventilator to help her breathe. He said that this would entail giving her a general anesthetic & keeping her fully sedated for at least the first 24hrs or maybe more.

He said that because she was so ill she might not even survive the process of being put on the ventilator. He also said that she needed some essential blood products before being ventilated in order to reduce the risk of death and these weren’t available yet so it would be 1-2 hrs before they could go ahead with the procedure. I knew that this unfortunate delay could further increase the threat to her life.

I asked the doctor if I could stay and hold her hand until the general anaesthetic had been administered and she had gone to sleep. He replied that this wasn’t possible as he had equipment to set up and I would be in his way. He continued talking, explaining other aspects of her situation, but I couldn’t concentrate. My stomach was churning. My child was possibly going to die. He was going to put her to sleep and I couldn’t be there to provide reassurance and comfort until the anaesthetic took effect. The last face my child would see would be his face and not mine.

I wanted back in to see Leah, knowing that every moment was precious, but right now my breakfast was threatening to make a reappearance and there was no relative’s toilet in ICU. I excused myself and made my way through the convoluted set of corridors until I reached the public toilets in the hospital foyer.

Thankfully the disabled toilets were available – I didn’t want an audience. I locked the door and gripped the sink as the walls spun round me. I closed my eyes and tried to slow my breathing. This was awful – just awful.

About 20min later I had finally regained my composure and could return to my daughter. I sat and read to her and prayed with her and we listened to her favourite Christian music on her iPad. Due to some difficulty in sourcing the very specific blood products Leah needed, it was a couple of hours before the doctor came and put us out of the room. During this time of waiting, Leah’s oxygen levels continued dropping and the machine that was monitoring her stats was frequently alarming. I wondered at one stage if Leah was going to live long enough to even go on the ventilator.

The Bible says in Ecclesiastes 3:2 “There is a time to be born and a time to die” and thankfully this was not Leah’s time to die.
On Monday 13th January Leah’s oxygen levels were again dropping and she was again finding breathing difficult although this time round she was already on a ventilator and she was awake.

Thankfully a different consultant was on duty – one who didn’t mind me being with my child & giving her comfort while he worked through the crisis. He tried many different approaches to help her with her breathing difficulties until the only option left was to fully anaesthetise her for the last time. While all of this was happening I comforted her by holding her hand and stroking her head. The last face that Leah saw before going to sleep was mine and it was a face so filled with love for my daughter.

Leah remained fully anaesthetised until she was transferred to the N.I. Children’s Hospice on Thursday 16th January to spend her final moments in peace and dignity surrounded by the love of our large extended family and a few very close friends.
It’s so hard to explain how in the midst of the terrible sadness of my daughter’s death I still feel an incredible sense of God’s perfect timing.
Another song that Leah and I loved comes to mind, it’s “Sovereign Over Us” by Aaron Keys
“There is strength within the sorrow, There is beauty in our tears
You meet us in our mourning, With a love that casts out fear”

Weak made strong, in the Savior’s love

Apologies to those of you who have been waiting anxiously for an update – it’s been a difficult one to compose.

Leah’s medical condition has continued to deteriorate.

Today has been spent in discussions with the ICU Consultants, our haematologist here, a paediatric palliative care specialist, our consultant in Bristol and other relevant professionals.

At present it looks likely that end of life care for Leah will be put in place tomorrow Thursday.

So very many songs have been meaningful to Leah and I on this journey – here is another one:
Christ alone, Cornerstone
Weak made strong, in the Savior’s love
Through the storm
He is Lord, Lord of All
When darkness seems to hide His face
I rest on His unchanging grace
In every high and stormy gale
My anchor holds within the veil

Hiya Honey

Leah appears much the same today as yesterday and the numbers on the various monitors appear unchanged.

Dr Uncommunicative is on duty so I’m not holding my breath waiting for an update.

The ICU generally has about 8 patients between ICU and HDU (High Dependency Unit) so it’s a relatively small nursing team.

The ICU patients are nursed one to one.

We are here two weeks now so we’ve got to know many of the nurses well and they are just lovely.

Two of the younger nurses have had cancer treatment themselves in recent years & one of them showed Leah photos of herself with her chemo hair loss which Leah really appreciated.

She’s a very cheery friendly girl & Leah always seems to respond to her no matter how sedated she is.

Yesterday when this girl came in the room & greeted Leah with “Hiya Honey” in her strong Belfast accent, Leah lifted her arms & joined her fingers to make a heart shape in reply.

This was no mean feat as Leah was very sedated and her limbs are heavy with retained fluid from prolonged immobility and the reduction in her kidney function.

It is lovely that despite everything relationships develop & communication continues.

 

The medical expertise and nursing care here is excellent

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.

 

Kindness transcends physical environment

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”.