Campaign for Clayden
- By: Chevanne Reichel
- Short URL: https://www.backabuddy.co.za/clayden-reichel
My name is Chevanne Reichel and I have started this campaign for our son, Clayden who is 22 months old. In April 2019, Clayden was diagnosed with chronic lung disease, recurring pneumonia/bronchitis, and furthermore diagnosed with severe reflux in early May 2019.
Clayden has a long road ahead and there is no simple way to say this...
Clayden has been quite a sickly baby since birth, and he has had recurring chest related infections. After birth, he was admitted to NNICU for fluid on the lungs and grunting which meant he started his life on antibiotics.
In April 2019, he was again admitted with pneumonia. With this being the fifth admission since birth, at merely 21 months of age, his pediatrician advised we run some further tests. This would ensure there isn’t another reason for him always getting sick, but also staying sick and having a constant cough for weeks after being discharged.
After x-rays and various blood tests, they found a low allergy count to egg whites, but nothing severe enough to cause infections or allergic reactions.
The x-rays raised some concerns, and he was then referred to a pediatric pulmonologist. The pulmonologist further advised that Clayden remains in hospital until he could be taken off oxygen, but was to be re-admitted to Waterfall City in Midrand for further scans and scopes.
On Wednesday the 17th of April, he underwent a CT scan and bronchoscopy in theatre. They found that Clayden has a narrowing higher up in his throat pipe, but due to his age, they do not want to perform surgery but wait until he gets older to see whether this would improve and expand over time. Furthermore, they found that the lining of the trachea and the esophagus was what they referred to as “hanging on a thread” and there was a certain section of the lining between the two which has worn away. This would then result in food being pushed up into the lungs. They injected this area to try and close it to prevent any further damage.
They picked up some reflux as well. He was placed on a 24-hour monitor, to determine the severity of reflux. His reflux count results were severe. He has a reflux count of about 54, where the normal range is between 14 and 15.
In theatre, his lungs were washed out and this was sent for further lab testing. They took two viruses or bugs as they call them, and planted them into his immunity cells, and the result was that without antibiotics, his immunity cells could not fight the virus, and basically his immunity is non-existent and cannot fight viruses on its own.
The hospital provided me with a short physiotherapy course, which allows me to try to treat him as best I can from home, but in the long run, it would be most beneficial to his health to have a day nurse who can attend to his needs. Up until this point, I have been doing all home cleaning myself, which also poses as a challenge now, as the environment around him needs to be not only clean but hygienic at all times. Having three little ones makes this difficult to keep up with while working at the same time. Most day nurse agencies charge per shift or per hour, and our average calculations equate to a day nurse averaging from anything between R10,000 – R15,000 per month depending on the hours, traveling and times they are required. We can't risk opting for a nanny that performs normal childcare duties as the risk of Clayden's condition becoming worse is too much. This in combination with someone who can assist with cleaning obviously poses a huge financial challenge.
As far as medical aid is concerned, we are on a medium plan which covers a certain percentage of in-hospital treatments, most expenses being specialist related. Our medical savings are already depleted with all the consultations and medication involved. As it stands currently, Clayden has a dietician, specialist anesthetist, pediatric pulmonologist, reflux specialist, along with the pediatrician and various other specialists who were involved during theatre, which warned that not all of them are covered fully by medical aids and certain specialists charge private rates. The costs are exorbitant. One of his two-week consultations, for example, are around R1,500, this does not get claimed by the specialist but can be claimed back from our savings, of which we have none remaining. This excludes the ongoing medication which is averaging to be about the same amount on a monthly basis.
As difficult as it is to say this, my husband and I have dug deep into our pockets up until this point but we have reached a stage where it is going to be unbearable to carry Clayden's treatment costs on our own. Any help will be so appreciated.
Herewith a summary of the costs involved with Clayden’s treatment as a guideline of the most recent costs and those to come over the next four months, but we have many more accounts we are still paying off prior to this as it’s all built up to this. We also don’t know what costs are still to come our way as it can take time to receive everything:
- A registered day nurse: R79/hour – if working 5 days a week Monday to Friday from 08:00 AM – 16:00 PM on average (R632 per weekday day and R12,640 per month) plus R5,056 p/m if she had to assist on Saturdays and R3,792 p/m for Sundays. He doesn’t have a nurse as yet as we cannot afford this. (R 21,488 per month and R 85,952 over the next four months) (R50,560 excluding weekends)
- His first out of hospital medication, of which the medical aid covered R1,011.86 from our savings (this was the last savings we had) and we paid the remaining R496.75
- The medication will work out to approximately R1,500 each month for the next four months (R 6,000)
- R 1,500 paediatric pulmonologist Dr. Parris consultation fee, which we cannot claim as savings are depleted – we paid R500 and made an arrangement to pay the remaining R1,000 by the end of this month
- He will be seeing her every two weeks so approximately R3,000 per month (R12,000 over the next four months)
- The anesthetist in theatre, of which medical aid only covered R3,039.60 of R 6200.70 (R3161.1)
- R7,650 owing to Olivedale Hospital which was not covered by our medical aid
- R7,650 deductible owing to Waterfall City Hospital which was not covered by our medical aid
We want to provide Clayden with everything we can to try and increase his quality of life and help strengthen him to withstand this better in the long run. For the most part, a chronic disease is not curable, but we can try our best to manage it and make it easier for him. We hope that over time his immunity strengthens and that he is able to at least outgrow the reflux. We would appreciate and be so thankful for even the smallest contribution towards helping Clayden, as the smallest amount will make a huge difference.
Update 30 August 2019:
Over the past four months we have seen bouts of major improvement in little Clayden, and the daily treatments have shown some positive results.
From the beginning we knew this was going to take some time, but we didn’t prepare ourselves for what was lying ahead because I think any parent really believes and has faith their child will get better soon regardless.
He had a few difficulties over the past few months and picked up a horrible ear infection and some bad flu in between which hindered his recovery process.
After the first few months of being home bound, the pulmonologist advised we could slowly start taking him out to the shops with us and visiting family again.
But Clayden’s immunity is much weaker than we anticipated. We definitely see an impact when he is in a new environment and he is easily susceptible to even the smallest bacterial infections.
With Clayden having two other siblings and us moving in between environments and coming home, also makes this more difficult to keep at bay.
He also gets extremely bored being in the same place all the time, with only so much to do to keep him stimulated and occupied.
But there is only so much we can do to keep him away from it and to a certain extent any child does need some form of bacteria around them, he is just that much more susceptible to it.
Clayden had a setback now in August 2019. He got sick and after a visit his paediatrician to make sure he is alright, his oxygen levels were extremely low and his respiratory rate dropped.
He was immediately admitted and transferred to Waterfall hospital with what resulted in being Multilobar Pneumonia.
His infection markers have shown a definite increase from April as seen in all his test results, and he has actually picked up some additional viruses in between.
His immunity is not yet strong enough to fight any type of infection or virus on its own and without the aid of an antibiotic or immunity treatment to help his body fight infection.
His lungs are worn out and quite a lot weaker, from all the coughing and trauma and this has resulted in him experiencing quite a lot of chest pain, especially with this affecting multiple lobes in both his lungs.
His reflux remains the same, and he will require his daily medication for the next 18 months, at least, to either start improving or outgrow this entirely.
Additionally, Clayden underwent sleep monitoring which could help us determine any underlying manifestations we may have overlooked.
And as a result, he is showing definite signs of sleep apnea, and a very low respiratory rate at night of about 82.
We have tried to change, alter and remove various food from his diet to try and see if he improves and have continued to do so currently but we have seen little or no immediate changes when his diet changes.
None of his allergy markers are a cause for concern as they all show as low counts, which makes it that much more difficult to find ways to get him better at a faster pace, because it’s not as simple as removing something specific from his diet or his immediate environment.
The nurses were astounded by the internal findings and results, along with how badly he had become infected this time around, because little Clayden goes about his day with a smile and laugh regardless of what is really going on internally.
This in fact, as much as it’s a blessing to have a content and happy child, has made it that much more of a challenge to monitor and know when he is very ill or struggling to breathe, without the aid of x-rays, machines and blood tests showing us the bigger picture. And it is extremely scary, given what my husband and I have seen, both in theatre and in all his results, as Clayden carries on the way any normal two year old would.
Although the treatment would have been relooked after the initial four month treatment, Clayden basically skipped being re-assessed and took quite a big leap backward with being re-admitted.
We can anticipate him still getting sick or having worse days, but the specialists agree that him getting sick to this extent should not be the case.
Clayden will continue with daily nebulising and physiotherapy, along with some additional treatments and medication in the meantime.
He will most likely be going into theatre in 6 – 8 weeks’ time to have his adenoids and tonsils removed, and perhaps have his grommets redone but we have to get him to recover from the Multilobar Pneumonia fully before the specialists are able to decide what we do next. Having these procedures done will hopefully be a step toward helping him recover a bit faster and hopefully the bacteria will have less place to manifest.
As much as we had hoped to get him back into a school environment and living a normal life as soon as possible, I think we have come to terms with this really being a severely chronic illness that has shown its ups and downs to us on a daily basis. Originally we aimed for Clayden to return to school early next year but given what we have seen, we do fear him being exposed to anything that can cause his condition to deteriorate any further.
We don’t want to take 5 steps forward, and 20 steps back every few months.
We do hope he progresses positively and recovers faster but we are taking into consideration the fact that he may need to remain home for a while longer, as challenging as balancing home and work can be, we just have to do this for our son.
We have a massive support system behind us and we really want to thank everyone for their help and support during the past while with Clayden.
This has been an extremely difficult time, to say the least, but without the support we have received so far, we couldn’t have done even half of what we have been able to do for him so thank you.
The funds raised will go directly to the relevant healthcare providers including Clayden's nurse.
- Jun 05, 2019 - R 510.00
- "God's Blessings." - Christine
- May 30, 2019 - USD $ 190.97
- "With love to you all. God Bless." - Family UK
- May 27, 2019 - R 200.00
- "Keep going! " - Sherilyn
- May 20, 2019 - R 500.00
- "Thinking of you" - Lorraine
- May 18, 2019 - USD $ 72.84
- "Lots of love" - Nicole Wexler
- May 16, 2019 - R 1 015.00
- "Stay brave :)" - Nobody's business
- May 16, 2019 - R 205.64
- "Best wishes for your son's speedy recovery" - Terri
- May 16, 2019 - USD $ 37.00
- "Thinking and praying for you " - Ross
- May 16, 2019 - R 507.50
- "May GOD keep you all in his hands during this difficult time. " - Shel