Monday, 26 September 2011

Through the eyes of a parent

Through the eyes of a parent
I said on my last blog that it was to be continued. I think the next most logical step to take is to publish my ‘mum’s log’ this contains information about what happened whilst I was unconscious and on life support but from a mothers perspective.
“Every tomorrow has two handles. We can take hold of it with the handle of anxiety or the handle of faith.”
Once again I found myself in the hospital chapel today praying for a safe recovery for Sharee and of course the strength to believe that she will make it.
I’ve got the impression over the last few days that staff don’t want to build my hopes but that is exactly what I need to hear ‘a little hope.’
The last few days have been the worst days of my life...
Tuesday we got the call to come to the Freeman in Newcastle and given the go ahead for the transplant, things were looking good, lungs a good match and in good condition, I was shaking so much, nerves and excitement about Sharee getting her new lungs at last.
7:30am Sharee was taken down to theatre they said the operation would take 6-8 hours approx. 8 ½ hours passed and I phoned Katie the transplant coordinator to ask if she could find out how things were going. She came to find me at around 8:30pm 11 hours after Sharee had gone to theatre, took me into a room and told me there had been complications, the donor lungs had been too big, the surgeon had to trim them to size, the condition of Sharee’s lungs was dreadful and secretions from them had leaked into the chest cavity. All of this had put huge strain on Sharee’s heart and it would not start beating, they had to crash it and put her on by-pass to rest the heart with the probability of leaving her chest open all night in theatre in case of blood clots because of bleeds. They decided, however, to close her chest at around 10pm and she was taken to I.C.U This news knocked me for six, I was so frightened and found it very hard to cope with. I wanted them to tell me that Sharee was going to pull through all of this, but they couldn’t their words were... “Critical and the next few hours are crucial.” No one can imagine how I felt at that moment.
I was allowed in to see her for 10 mins and it broke my heart to see her wired up with tubes, machinery etc, I was expecting it but it terrified me.
The next day Thursday the 11th, I was allowed to see Sharee and was told I could come and go when I pleased because of the circumstances. Things weren’t looking very good, there was mention of going back into theatre because of suspected blood clots, Sharee was been pumped full of drugs to steady her heart rate, try stem the blood loss, she was needing blood transfusions and then started to bleed inside the lungs, which they thought needed to be looked at in surgery. I was hoping and praying it would not come to that they had already said that her body had suffered a great amount of trauma.
Sharee’s dad and sister arrived to see her, staff were reluctant to let both of them into visit as rules say 2 to a bed to reduce risk of infection, but again they let them both in just once to see her because of circumstance. Over the course of the day Sharee’s heart rate seemed to steady and the bleeding slowed down which was very good news I was then told that her condition was stable ‘a good sign’.
Today 12th of August: - things have been much the same, I arrived at the unit to find another large machine had been rolled in, Sharee’s oxygen levels had fallen very low overnight and once again they suspected blood clots to be the cause.

The machine was to enable a camera to be put down to her lungs to see what was going on. It didn’t show much so again that was good.
At the end of today when I left the unit Sharee was been given an infusion to help her pass urine, with all the fluids going in not much was coming out. I was told that fluid retention can put a strain on the heart and lungs, therefore, if the infusion doesn’t work then dialysis maybe given. I'm really hoping that when I go up there in the morning they have some good news for me.
Saturday 13th August
Sharee had a good day today; the dialysis wasn’t required which was good news. Her blood pressure was a little unstable so a few new drugs were introduced and the drug that keeps her unconscious was reduced and the pain relief increased to compensate for this. Staff were quite amazed at the fact that Sharee was moving about so much and opening her eyes considering the amount of pain relief was enough to put a rather large man out for the count, but that’s my Sharee fighting already.  So all in all, a good day. Darren came up to Newcastle for the second time which was nice; it’s so lonely been alone up here, Sam is coming tomorrow. Hopefully they are starting to wean Sharee off of some of the drugs tomorrow. The surgeon said today “we are now beginning the steps forwards instead of backwards” nobody can even begin to know how it felt to hear those words...
After seeing Sharee open her eyes and move her arms around yesterday to the sound of my voice, I was quite downhearted today to see her heavily sedated, her temp was high again 39.2 and the bleed from her right lung had increased again. They didn’t seem overly concerned about this, or if they were they were not letting me know. They answer all my questions with “yes were quite happy with the way things are” I'm sure they are happy that things are stable but it feels to me that its one step forward  and two steps back and it’s hard to get my head around. I suppose been a mum I want to see things happen faster but I know they won’t because of the trauma she’s been through. Let’s hope tomorrow brings good news...
Not a good day today, Sharee still has a high temp and her x-ray wasn’t quite as good as yesterday so another broncoscopy was arranged for 12 lunchtime.  I went for a walk and returned later .They found lots of inflammation on her left lung and sent off lots of samples to check for infection I was also told she had a bit of a seizure and because of the irregular heartbeat they had to shock her heart twice to give it back a normal rhythm. This worked for a while but the monitor which I'm constantly watching began to show irregularity again, I had to leave the unit and get some air to clear my head. I’ve got to have faith that the doc’s and nurses know what they are doing; I'm just so desperate to see improvements. There are signs that Sharee is trying to fight i.e. every 20 breaths that the ventilator gives her, she is breathing 10-15 breaths herself and when I said goodnight her eyes opened. I looked at the radio wishing it was a CD player so I could perhaps play some of her favourite songs like Avril Lavigne then the DJ said “coming up we have Avril Lavigne ‘Complicated’” what a song title, what a coincidence of thought.
Wednesday 17th August
Today when I arrived at the unit I was told the plan was to put a tracheotomy in Sharee as she wasn’t tolerating the mouth tubes, Sharee was semi awake and trying to mime something to us. We understood she wanted her teeth brushing, but couldn’t quite get what else she was trying to say and she found this very frustrating and got quite upset about it.
I returned to the unit around 5pm as instructed by the staff and was amazed to see Sharee sat up, completely off her sedation and wide awake. She tried miming again and eventually we understood what she was trying to say and why she was so upset that I didn’t understand. She wanted to know if she had actually had the transplant, I was elated when I finally answered Yes you have had your transplant. Sharee looked up to the ceiling and mimed the words ‘thank god’. She’s asked many questions tonight a sure sign she is back and ready to fight, what a good day!
Thursday 18th August
One week and one day since Sharee had her transplant, I think I'm going to bring ‘mums log’ to an end. Writing things down has helped me put my thoughts in order but more importantly it’s a window for Sharee to look through and see the events of the week in which she slept after surgery, a week that I can truthfully say has been the worst of my life, I’ve prayed, I’ve cried, I’ve hoped and when I get the time I'm going to have a nervous breakdown.
Sharee is bit by bit, day by day getting stronger and more determined, I can now see her fighting spirit showing through, it’s the sign I’ve been waiting for because now I know that Sharee will fight her way back to full fitness and nothing less will be good enough for her. I think I will sleep well tonight! Xxx

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