We've Come This Far By Faith!

It's been long months, but I'll share, just in brief; my journey of faith, perseverance, hope and triumph.
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One Day Old

June 2017.   We all were small once.

Thinking of Scalpels

Nov 2017.   A day before the PSARP.

Chilling

May 2018.   A few hours after the Nissen Procedure.

Celebrating this sitting thing.

October 2018. A miraculous happening. Who ever knew. God’s hand supporting me on all sides, a loving team of physiotherapists and lessons from big brother.

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Battle Hardened and Going On

Last updated 04 May 2019.

Lwanele is a 1 year 11 months old boy born on 1 June 2017 with multiple birth defects. These defects have led to 4 major operations in the first 12 months of his life. Lwanele was born at 32 weeks, weighing 1.6 kg with the following birth conditions:

  • Imperforate anus (no anus)
  • Encephalocele (malformation of the skull, leading to leaking out of brain fluids)
  • Hydrocephalus (water in the brain)
  • Tracheo-Bronchomalacia and Laryngomalacia (flaccid windpipe)
  • Tracheo-Eusophogal fistula (abnormal connection between the trachea and the oesophagus)

51 days in the Neonatal ICU

From birth he stayed his first 51 days in the Neonatal ICU, during which he had two operations. The first was to fix esophageal atresia and the second was the colostomy procedure.

Posterior sagittal anorectoplasty (PSARP)

He had another operation when he was 5 months old, to create an anal opening for him (PSARP). He went home for a while.

Pneumonia

Lwanele was then readmitted on the 10th of January with suspected bronchopneumonia and was taken to theatre for grommets and adenoids. The latter was expected to ease his wheezing and snorting as well as open up his airway so as to make his feeds more comfortable. The wheezing continued and he still had it bad during mealtimes when he went back home.

29th of February 2018 saw Lwanele being admitted again for what was still believed to be pneumonia and was discharged on the 9th of March after another bout of antibiotics, and aggressive chest physiotherapy.

ICU at Busamed Modderfontein

On the 3rd “bronchopneumonia” admission he was in quite a bad state and had to be moved to ICU when his frail lungs seemed not to be coping at all. He was admitted into ICU at Busamed Modderfontein on the 24th of March 2018. Here scans and other tests revealed he was infact suffering from aspiration pneumonia. Both his lungs were collapsed as such urgently needed to be on ventilation and intravenous feeding.

While at Busamed Modderfontein a broncoscopy revealed that Lwanele had the tracheoesophageal fistula recurring and needed corrective surgery as soon as he was stable and fit enough. The same was scheduled for Sandton Mediclinic. The scans also confirmed the doctor’s fears that he had tracheomalacia which could require an aortopexy. This is a pretty invasive and high-risk operation.

Sandton Mediclinic Paeds ICU

On transfer to Sandton Mediclinic Paeds ICU on the 10th of April another bronchoscopy was done on him to confirm the tracheoesophageal fistula. Miraculously the scopy and another that followed two weeks later came out negative and he was spared that particular surgery.

A swallow study conformed his laryngomalacia and a constriction at the site of the earlier TOF surgery. The tests resulted in him having an esophageal dilation, Nissen operation as well as a feeding peg operation on the 10th of May.

After the operation Lwanele struggled a lot with lung secretions and sweats during the peg feeds. Lab tests revealed a drug-resistant Acinetobacter-baumannii infection in his airways. He is still taking colistin through nebs alongside other antibiotics to try and deal with the stubborn bug.

Discharged on 30 July 2018

Because of his collapsing airways, Lwanele was discharged on high flow oxygen and other equipment. He left hospital on 30 July, going home for the first time in 5 months. He was also granted 24/7 home nurse care which has been renewed now up to the end of March 2019. He may need the same service beyond then.

Back in Hospital October and November 2018

Despite all current efforts and insanely paranoid hygiene precautions, Lwanele had to go back and be admitted in hospital for 9 days in October 2018 for pneumonia. He was admitted again at Mediclinic Sandton, this time for incessant vomiting and a collapsed lung from 22 November to 14 December 2018. The doctors managed to avoid a redo of the Nissen Fundoplication. He’s been home ever since, with isolated bouts of vomiting but, jovial as ever, turning round and round in that little prison of a bed.

Speech Therapy

By the way, he has started speech therapy as of the 21st of January, sponsored by the Marian Rose Foundation. The therapists need to work to restore mouth function considering he hasn’t fed through his mouth since May 2018. Also he’s getting assistance in channelling his parrot-style mimicking. We believe this is a beginning of great things to come in this exciting and, at times, tense journey.

Medical Needs

The little warrior takes a lot of medication in his home regimen. The last quotation for a month’s supply sat at R25 000, always varying with each month and per doctors’ advice.

Medical Aid only covered part of his medical bills including some of the medicines in 2018 However, 2019 has come with new rules, as it stands only two of his lot of medicines are covered as “chronic”.

Efforts to have the entire lot covered seem to repeatedly hit a hard rock.

Additional to the hospital bills and medicines, Lwanele needs; a specialised home-based care giver, occupational and neuro-physio therapy.

Visits to these professionals get cumbersome for him given he is still heavily reliant on the high-flow oxygen equipment in his home. The therapists charge extra for home visitation. Further to that, he needs to be regularly seen by his paediatrician, dietician, neurologist, neurosurgeon, pulmonologist, general surgeon as well as the ENT, a sure strain on finances.

In his 20 months of life, Lwanele has proved to be a strong fighter, battle-hardened and seeming to love life. A life that should be given a chance to hear this tale given to him in his teenage years and well into adulthood. A story of hope against despair. A tale of how humanity chipped in to defeat odds and support a young life’s battle and victory against all odds.

 

To know more about Lwanele contact +27 76 718 3964 or email info@lwanele.me

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MAJOR OPS I’VE GONE THROUGH

OTHER PROCEDURES DONE ON ME

UPCOMING PROCEDURES

  1. Date TBA Aortopexy
  2. Date TBAEncephalocele Repair Surgery
  3.  Date TBAColostomy Reversal Surgery

ONGOING TREATMENT

Chest Physiotherapy

Every Second Day. Has successfully kept my lungs from collapsing too frequently and helps in loosening my chest.

Oxygen Support

Continously Connected to High-flow equipment. I hate it when there are powercuts. My machines need the electricity full-time.

Multi-Drug Nebulisation

Bronchodilation and Antibiotic Treatment. Fighting a war against this nasty resistant bug. I flood it with meds daily.

Suction and Posterior Drainage

Continous and Whenever Necesarry. Yep, flushing out those stubborn bugs and secretions keeps me breathing clear.

Specs for Myopic Astigmatism

Continuous. I need the glasses but I hate the way they irritate my face. But I’m told they will help me avoid surgery, also, I look good in them.

Neuro-Physio Therapy

Attempts to Mitigate Cerebral Palsy Symptoms. Miraculously, I can sit now. I’ll continue kicking ’til I can run around with my big brother. I know he cant wait.

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