Fundraising for Brennagh and family

THE LAST 7 DAYS (written by Brennagh's mum) I thought Brennagh was doing her gnormalh random leaking of her food from her PEG. We have never been able to explain the reason why she does this. of Brennagh. It has become part of our routine that we fit in as a random act of Brennagh, unexpected and unexplainedc Sometimes, she can leak for dayscsometimes nothing comes of it, sometimes it will lead to vomiting lasting for short periods to long periods ending in hospital admissions from massive fluid loss and rapid weight loss, requiring IV fluids and antibiotics. At these times she would appear to be on the brink of death, and Ifm sure she was. This was just part of glife with Brennagh, surviving and living with Trisomy 18? We've become used to it over the past seven years. Today seemed to be one of these occasions. Brennagh started to leak from her PEG at 4pm. At 4.30pm I gave her medication to settle her anxiety that follows. By 5pm I noticed her torso had completely blown up and was hard to the touch and at this point she was struggling to breathe. I donft know why I didn't call an ambulance at this stage but I didn't, I quickly bundled Brennagh into the car and drove as fast as I could to hospital. At the same time I was calling our Home care medical team at the hospital and have a registrar meet me in Accident and Emergency. Something that was put in place each time we had to go to hospital to hasten Brennagh being seen and lessening our risk of exposing her weakened immune system out in the waiting room. We met the registrar out in the, followed by an xray to discover why her tummy so swollen and hard. This revealed a large pocket of air which was pushing her diaphragm up which was crushing her lungs making it difficult for Brennagh to breathe. The xray didn't reveal much more than this. A surgeon came in and i was tasked with the decision whether to fly to Wellington for surgery, adding another 3 hour wait or have exploratory surgery here in Palmerston North. I opted for the latter as I felt Brennagh wouldnft make it to Wellington. I was told all signs showed Brennagh was a very sick little girl. We had an anxious 2 hour wait for surgery. 9.30 pm Brennagh was wheeled into theatre. 11pm she was in recovery and we were able to see her. One of my best friends and Brennaghfs homehelp/carer sat with me. The surgeon explained Brennagh was indeed a very sick little girl and I was lucky to have take her to hospital when I did. her bowel had twisted and 3/4's of it had to removed. Also she had lost a portion of her small intestine. Brennagh was now on life support and in an induced coma. The surgeon explained to me that they had left her open as he wanted to go in the next day to check if anymore of the bowel and small intestine had died. At this point she had enough left to sustain life. however, as Brennagh already had a pre-existing terminal condition it was highly likely she would not survive the night. I was devastated. Brennagh was scheduled for the second surgery 14 hours later. I prayed hard that she would make it through the night, then I prayed no more intestine and bowel wouldnft die through the night and be removed. I did not sleep, I sat with her hoping these were not my last hours with her. I was broken. I could not believe how fast this had turned my life upside down. I couldnft believe what I was seeing and hearing from the doctors. It seemed so surreal. Thoughts of how I was going to tell her brothers and father plagued me. Thoughts of how I was I was going to even explain any of this to them as she was awake and sitting in the car the last time they had seen her. Thoughts of how I live without her. Thoughts of having to keep it together for Brennagh, for my family, for everyone who had been involved in Brennaghs life. I was totally overwhelmed. I stopped thinking long enough to consider what was important to me in that moment. I gently help my beautiful little girls hand. Laying there with so many tubes and lines in her. Fluids and drugs going in, fluids and waste coming out of her tiny 15kg limp body. I spoke gently to her. Making promises to her if she would only stay in my life long enough for me to keep. Willing and pleading her to have the strength to continue to live. I wasnft ready to let her go. I struggled with expecting her to carry on. Was I asking too much? Was I being cruel to want her to keep fighting? I whispered gently to her, If I was asking too much, if it was too painful for her to carry on it was ok for her to let go. I loved her so much I would understand if this was too much for her to bare. I would never want her to suffer. I was so scared. As the hours ticked away I dared to be hopeful. Please, please, please make it til the morningc.please make it surgery, pleasecc. Whether it was by good fortune or whatever, a well known paediatric surgeon was coming to Palmerston North for a prior engagement. He was teed up to be in on Brennaghfs surgery for us our surgeon. Please just stay with me long enough for the best team of surgeons to do their magicc.please. 5 hoursc.6 hoursc.7c.I kept thanking Brennagh, I thanked God, I thanked the Universe. I continued to pray for the best outcome, all the while knowing the odds were against us. Everyone was so kind, so informative but most of all so honest, but I could not focus on the facts. I had to will myself to believe in the best outcome. I had to be strong and believe it would all work out for the best for Brennaghfs sake, for minec.. Right before surgery Brennaghfs liver started to show the strain, to what extent we could not be certain until she was in theatre again. If her liver was failing it would be likely she would not make it off the table. If by chance she made it through the surgery our chances of surviving beyond that were getting slimmerc.At that point I had almost given up all hope. It is school holidays. All Brennaghfs brothers had to be gathered. Brennaghfs dad brought them to the hospital. I was frightened this would be the last time they would see her. I couldnft tell them this was why I had them brought here. We sat quietly in the waiting room. I explained Brennagh looked so different to when they had seen her at home the day before. I explained to them that she had lots of lines, that she had a machine that was helping her to breathe and that if they had any questions about what they saw not to be afraid to ask the team of drs and nurses that were helping her. I wanted to prepare them to lessen the shock. Brennaghfs little body was covered so they didnft see the gaping wound in her tummy. Plans had been put in place after the first surgery when Brennagh had survived the first night after surgery. Finally we would be sent to our top hospitalc.Starship Childrens Hospital in Auckland. But first Brennagh had to survive long enough to make it there.So many of our medical friends and family and friends camec.lots of tears hopes and memories shared. I prayed for our Willy to come, for some reason it was important that our own paediatrician came. I wanted him to talk to her as he did when we visited. I wanted him to tell her in his own special way to behave herself. I believe she has a special unspoken bond with Willy. A visit with Willy always made Brennagh right. I desperately needed Willy to get here but at the same time he has many children to look after in clinic. Willy arrived by the skin of his teeth, managing to spare a little time from his other equally important charges on the wards and in clinic. I was so happy to see him. I hugged him and cried, I wanted him to make it all better for us. I asked Mr Pringle and Mr Young if Brennagh made it through the surgery but it was inevitable that she would pass, I asked if I could be alone with her at the time. At that point I felt she had come into this world with me and if she was leave it I selfishly wanted it to be the same way. I didnft dwell on this any further. I willed her to make it through the surgery. Brennagh was wheeled once again to theatre. My sister arrived in time to give me a quick hug and I jumped into the lift with Brennagh, the surgeon and a nurse. Looking through my tears at Willy, he whispered, Donft give up hope yet. Arriving at the theatre doors the surgeon said, gthis is as far as you go mumh Thank you and good luck I said, crying like my heart was breaking to pieces, thinking that was the last time I would see her breathe. Surgery was fast this time, under an hour. Finally, the news I had waited to hear. Surgery couldnft have gone any better. It was great and hope was still there. We were still going to Starship Childrens Hospital. Please Bren just hang in there. Theyfre flying in to get us. Hold on a little longerc.CRITICAL BUT STABLE! my angel is fighting to hold on.