Amelia’s journey – Fontan

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It’s that time again, that very unsure, heartbreaking time. Our letter came to say Amelia was due in for her fontan. After receiving our initial date we were cancelled twice in one week. At first we were angry as we have so much to put into place with four other children. Family took time off work and lost that week to help us out. Looking back it was more time with Amelia and we needed that for our whole family.
So Sunday 22nd August and we are on our way to Bristol Children’s Hospital, I have this deep feeling of fear in my heart and both Paul and I again wish we could close our eyes and this all be over for Amelia. We met the anaesthetist and the team who would be looking after Amelia during surgery. Mr Cuputo Amelia’s amazing surgeon came to speak to us about the risks and for us to sign the consent form. Amelia was very upbeat that evening, little did she know what exactly was to come. That was the last time I saw my sweet Amelia’s sparkle. If I could have made one wish that night, I would have done in a heartbeat…….
Paul and I stayed with Amelia and were awake early, the nurses came with the sleepy drug which Amelia took and was very very sleepy then at 8.30 they came with the theatre bed for us to take Amelia to theatre. Up to this time we held Amelia so close and didn’t want to let her go. Our brave little heart hero, it was time to say our good-byes. After holding Amelia down for the gas mask she fought and cried and cried even after she was asleep. We kissed her little cheeks and said we will see you later. Leaving Amelia was for both Paul and I so very hard and both of us broke down in tears. We made our way back to the ward to collect our bits. Paul and I walked very slowly to the flat we had rented, which was only a 5 minute walk away. The feeling was even worse than before, pain in our chest, sickness in our stomachs. Any heart parent could relate to this feeling. Our other children apart from baby Phoebe with my mum came to be with us, so we all waited and waited and waited……we were told a 6 hour surgery, 6 hours came and went and by this time we were back at the hospital waiting to be called to see Amelia. 8 hours later we were called into PICU. At 5 o’clock we went into see her.

At her bedside the doctor on duty that evening asked if anyone had spoken to us about what happened during surgery. My body went cold and my heart was beating so fast. Amelia was still asleep, they kept her that way so her heart could rest. We had not spoken Mr Cuputo about surgery so Michelle the anaesthetist came to speak with us and asked if we could go to the quiet room with her and a nurse. I was shaking with fear holding tight onto Paul’s hand. During the next 10 minutes all I can remember was Michelle’s mouth moving and a loud white noise surrounding me, the nurse moving a box of tissues to the edge of the table. I didn’t cry, I didn’t want to believe what had happened to our precious daughter. My older daughter’s and my mum were in the family room waiting to hear from us and to see Amelia. It was then when they said what happened I broke down in tears; on that day another part of my heart was broken.
We went back in to be with Amelia, stroking her head, kissing her hand I thanked God he let her live by giving back her life during surgery. Amelia was touched by an angel that day. On opening her sternum her heart was torn as it had fused itself to the scar tissue of her previous operation. It bled profusely and at that point she lost all her blood clotting properties, they stitched her heart and carried on with surgery. Again they came across another problem, where the gortex tube was meant to be going they couldn’t see as a canula was blocking the heart and they were sure it had torn in another area. So they made the decision to freeze her body to 18* which in itself very dangerous, so they could see better on how to carry on. Amelia then went into cardiac arrest, she died for 12 minutes; they revived her and dealt with the heart. She was then put back onto the bypass machine for the second time during surgery. They then mentioned there may be a chance of brain damage because of the body freezing but they wouldn’t know until Amelia woke up. They completed the surgery eventually and Amelia was very poorly in PICU.

The first night Amelia was on lots of blood clotting agents such as platelets, cryo, tranexamic acid. Pain relief- milrinone, morphine, midazolam, dopamine. This night Amelia was on the verge of being taken back into theatre as her chest drains were bleeding too much. The doctor in charge called her surgeon and they were all ready to take Amelia back to stop the bleeding, they thought her stitches had not held from the tear in her heart. My heart was in my throat so much during this whole journey and my husband Paul also. I wanted just to hold her and keep her safe. They gave her more tranexamic acid and within the next 5 minutes they worked and the blood flow was lessened, the urgency was gone. For them, for us WHAT JUST HAPPENED!!! We left her at 10.30pm that night and could not sleep, we were back with her at 4.45am.
On arriving the nurse Laura told us that Amelia decided at 4am to climb onto all fours and tried to get out of bed, in a complete daze. Then went back to sleep. The rest of the day Amelia did not wake and they were getting concerned, we were concerned, the liaison nurse Cathy was concerned. She was still on bypap and all the drains and tubes stayed put. Laura then told us Amelia had the pacing box on at 100% as her heart couldn’t find its rhythm. We stayed with her all day all night just hoping for a glimpse of Amelia. The night staff came on and we asked if they decided to do anything drastic to call us and we would be come to PICU. We stayed as late as we were able and during the night we assumed things stayed un-changed.
We had a call at 4am to go to PICU, we walked in and Amelia was awake but looked straight through us, no response at all, she wouldn’t even look at us, she then went in and out of sleep all day. During the night after saying not to do anything without us they decided to take her of bypap and put nasal oxygen tubes and an extra mask as it wasn’t enough for her. Her feeding tube came out also. They also took her off midazolam and dopamine. She was still being paced at 100% no improvement and her saturation levels started to drop into the 70’s. Everything seemed to be condensed into one whole painful day. We watched on as she didn’t make the improvements they were expecting. She was put on heparin, and they were still concerned. Her catheter was taken out on this day and Amelia did not go to toilet for 15 hours from this point. So the catheter went back in and the feeding tube went back in. She had an ultrasound scan on her left lung, they found a build up of fluid around it and the base of her lung had collapsed. We were also told she had pneumonia. No wonder she wasn’t improving. So I think we were on day 4 now in PICU, gentomisin, estatin and other antibiotics were being given to Amelia.
This day was when I felt even more helpless, the physiotherapist came to help Amelia’s collapsed lung by thumping her back, she just led there no emotion, no protesting, nothing……..This was also the day Paul could take no more, seeing his little daughter being so brave and having to go back to have another drain put in for her left lung fluid. She made no improvements still, still paced but down to 80% a slight improvement, still on oxygen of 3 litres, nothing taken away apart from some pain relief. This was the longest day, we just wanted to see Amelia and for her to acknowledge us.

When would Amelia start to improve and the treatment lessen? After a good night’s sleep the decision was made to remove her chest drains, even though it seemed her chest was still seeping. Her oxygen was reduced to 1 litre and her pacing machine turned down but left connected. It seemed too good to be true, was this the day she would make the turn toward the finish line? No. X-rays were carried out three times daily and this detected the next set back. After another ultrasound scan it was verified she had another build up of fluid, but this time on her right lung. So another lung drain in which meant 2 pots on the floor either side of her bed. She looked far from well but we were told we were heading up to ward 32 that evening. On moving Amelia all her wound sites and nose started to bleed – what next??

Amelia was put in a high dependency room, 2 lung drains intact, an IV line still in her groin, a line of heparin into her left hand and still taking oramorph to relieve her pain. We took alternate shifts to sleep with Amelia in her room. Her lung drains were still in but her catheter had been removed, trying to get her on a bed pan in the middle of the night was such hard work, trying to lift her carefully whilst keeping her drains out of the way, the bed always got wet. The following days seemed to merge into one, Amelia was so frail and weak. The IV line from Amelia’s groin was removed as they felt it wasn’t needed any more. The following day they needed to test her blood so we had to hold her firmly on the bed, crying her eyes out while the nurses drew blood from the inside of her arm. They did the same the following day.

Amelia was starting to improve, although very slowly. Paul managed to walk her to the toilet one morning with the aid of one of the nurses, carrying her lung drains and her heparin drip on a mobile stand. It was only a 10 yard walk for us but must have felt like 100 yards to Amelia, our brave little warrior did so well after being lead in bed for so long. The return journey was too much for her, the pain was too much to bear, especially with her lung drains pulling on her sides. These were removed on day 9 or 10 I think, nothing was too clear, following a trip to x-ray in a wheelchair. The heparin line from her hand was also taken out. Over the next couple of days we tried walking to the toilet a few more times, it was such a relief not to have to try and put her on the bed pan and so much easier for Amelia with all of the tubes and lines taken out. She was taken off her antibiotics and her nose tube was removed too. The only thing she was taking now was calpol as pain relief, diuretics to help remove any more excess fluid remaining in her body and of course the one thing she can’t do without, warfarin.

The pain and screams that we saw Amelia endure was something we will never forget. On the last day in Ward 32, we were told that maybe Amelia would be better off recovering at home but had to go through a series of tests. Her x-ray came back ok, her heart rhythm, she was put on a 24 hours monitor; she was still grey and barley walking. The echo…well as soon as I saw the Dr’s face I knew we weren’t going home. Amelia had a pocket of fluid around her heart. One Dr said I am afraid you won’t be going home until Monday at least. On that being said Amelia broke down and sobbed and sobbed and wouldn’t stop. This day we went home Dr Allison made the decision to let us go home only to return on the Monday for another echo. We went home with our brave heart hero Amelia.

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