Twisha is suffering a lot and so am I. Both of us are facing the hardest days in our life.
These days were really very traumatic. But thanks to all the Doctors and Nurses in Grace ward NICU. They worked hard to save Twisha’s life and took nice care of her.
Twisha was on good recovery then and had less tube gradually. She was planned to discharge from hospital. She was discharged on 11/04/2011 with Gastrostomy tube feeds and Oesophagostoma (spit fistula, opening of upper oesophagus) on her chest. She has to be admitted to the hospital again for Kimura Lengthening procedure. With this plan Twisha came home.
In the beginning it was very hard for me to take care of Twisha. But my little angel’s smile made a teaching path way for me. She was having fake feed from mouth even though it was just coming out from an Oesophagostoma on her chest. It was making all messy but she was enjoying it. After few days at home I could see Twisha looked healthier than before. She became more active and interacting and most important smiley. I knew that Twisha has to be admitted to the hospital for her next Kimura Operation. I was enjoying each and every moment with her at home.
Her next operation was booked on 04/05/2011 for Kimura Lengthening Procedure. In that operation her upper oesophagus was stretched further down on chest. First 24 hours were really very painful for Twisha and so for me. Over all it went successful and within 3 days she was discharged home.
Twisha had another Kimura lengthening on 01/06/2011. After operation Twisha had complications and she had to suffer a lot. She had an overdose of pain killer. The emergency team came immediately and gave her an anti-pain killer Drug. More over her oesophagus was pulled back underneath her skin and she had got too much swelling around operated site. Her saliva started gathering underneath her skin. And swelling spread out too much around stoma. She was given antibiotics to treat the swelling. It started getting down, but Twisha had to undergo another operation to fix her oesophagus as it was pulled back inside her body. So surgeon operated her again on 06/06/2011 and fixed her oesophagus at previous site where it was before last stretching. After this operation she was on recovery and was discharged home on 09/06/2011.
After this failed Kimura Operation I was very much tensed about Twisha’s future life. It was decided to not to do any operation on her for next few months. In the following appointment with her surgeon we discussed about the future possible ways to repair her. And they expected to do Gastric Pull Up or again to give a gentle retry on Kimura Lengthening few months later.
Move over in the end of June month Twisha’s Mum had to separate from her Dad due to domestic violence. Twisha became homeless with her Mother. Since 1st July Twisha has got only one parent, her Mother.
After her last operation Twisha was doing well. Her growth in other part was normal. She was growing as normal as other baby of her age with Gastrostomy Tube feed. I again contacted Dr. Foker’s team in Boston. I spoke with them regarding Twisha’s current situation and asked their opinion. I sent Twisha’s medical records to them by mail. After reviewing them in their system they gave their opinion that Foker procedure can be done on Twisha. I felt little relief after hearing their words.
Meanwhile Twisha had created some problems in passing her saliva through a Oesophagostoma on her chest and she had few chocking episodes because that Oesophagostoma had started becoming narrow. She was having difficulty in swallowing and passing her own saliva. Day by day Oesophagostoma was getting narrowed and she had to rush to an emergency few times because of chocking. She needed to fix her problem. There were two options for her; have another gentle trial of stretching her oesophagus further down or if it doesn’t seem to be worked then just to dilate the Oesophagostoma.
So Twisha had an operation on 24/08/2011. Her upper oesophagus was stretched further down successfully. Twisha had good recovery and was discharged home on 27/08/2011.
She remained well for few weeks. Again she had chocking episodes because of narrowing of stoma on chest. She had another operation to dilate the stoma on 24/10/11. But within few days stoma started getting narrow again. So she had another operation to dilate stoma on 06/11/11. In this operation Surgeon had put a plastic stent into her stoma just to stop it getting narrow. But because of the stent Twisha was not able to swallow well, so she had same choking episodes, but this time she learnt how to spit out from mouth. So it was less danger to chock. It was hard to keep the stent in. Sometimes it was off and had to insert it back into stoma. It was hurting to her and bled sometimes. It was very awkward dressing on stoma with stent. It was too dirty and yuk and was very unhygienic (because of her saliva and practising sham feeds). Because of these difficulties then it was decided to remove the stent. Just after couple of days I discover that she had developed a bump on her chest where her upper oesophagus was passing underneath her skin. And since then she was not able to swallow and she learnt to spit out from mouth even though she was on regular dilation. Sometimes she was passing her saliva from nose. She had stopped passing her own saliva at all and she kept spitting out continuously. After 20 days that bump started looking red on her skin. So Twisha had another operation of “Revision of Oesophagostomy”. In this operation surgeon had put a cut into her upper oesophagus and made a new opening to drain her secretions. She was hospitalized for 23 days. She is again on everyday dilation since her last operation.
Surgeon here is trying different things on Twisha during her treatment, but because of lack of expertise in this case Twisha is suffering a lot and so am I. Both of us are facing the hardest days in our life. It is really very hard to manage and bring up the baby with medical condition, especially being a single parent and have no more supportive environment. I am struggling hard for my little one’s normal life.Help To Give Twisha A Normal Life