Loi's visit for Surgery
Loi's trip to Australia for life saving surgery
The Rotary Club of Melville in Western Australia was proud to have supported Pang Ting Y Loi from Vietnam. Loi was suffering from Encephalocele and needed urgent surgery as the right eye shows signs of ocular compression. This surgery would never be attempted in his native Vietnam.
Below is a chronical of his visit to Perth's Princess Margaret Hospital to have surgery sponsored by ROMAC - (Reaching Overseas with Medical Aid for Children). Below is a web link to the ROMAC site. Please take the time to learn and understand what this very important program is all about and the differences it has made to chidren from developing nations lives. http://www.romac.org.au
Loi and Mai had the utmost trust and faith in what everyone was trying to do for them. Loi has the heart of a lion as when he was in pain or became afraid he would sing and he has the voice of an absolute angel.
Special thanks to the doctors and nurses from PMH for their professionalism and dedication and for donating their time to look after Loi. The surgeons have donated their time for completing the proposed delicate surgery.
Jacquie and Loi (before surgery)
Special thanks to Jacquie Heron (JH) from the Melville Rotary Club also for her dedication in being the co-ordinator of the entire process for Mai and Loi and his medical adventure. Jacquie as usual has put in 110% even though she has a very busy professional and family life. Thanks also to Jacquie's family for their patience because without Jacquie this would probably not have happened.
LOI'S DIARY
June 2008 - Word is back from Vietnam through Cuc that Loi and Mai are both doing really well and Loi is rapidly growing up but he keeps saying he wants to come back to Australia to live with Jacquie.
January 2008 - It was with much sadness that Mai and Loi returned to Vietnam with Loi given the opportunity for as normal a life as possible going forward. We all wish them luck.
Monday 26th November - (JH) Loi is doing really well and in less than 24 hours is stable and so they have moved him out of ICU and back into ward 6A. This afternoon there were lots of visitors and as usual the men were surprised how Loi had the 4 women there all attending to him. His eyes are quite puffy today so he can’t open them but is very aware of who is there and is talking, eating, drinking and having cat naps and constantly wants to hold someones hand.
I have attached 2 photos, the first taken in ICU a few hours after the op and the second on Sunday afternoon in the ward.
He looks really good.
Saturday 24th November - (JH) Absolutely wonderful news! Loi’s 7 ½ hour operation went very well and he looks fantastic.
He will spend 1 or 2 nights in ICU and then back to ward 6A, room 6. He will probably only be in hospital for 1 week, then home, Vietnam in a few more weeks.
Mai is very happy and her family are also thanking God and ROMAC, and lots of tears.
I will send some photos soon but better to wait until he has all the tubes out ie when out of ICU.
Monday 5th November - (JH) It seems ages since I last sent a report about Loi.
We actually have in writing that Loi’s operation will take place on Saturday 24th November.
Only a couple of hospital appointments before that to check things such as his fits which are well controlled with medication - now about 1 a month, and also his blood levels. Hopefully all will be good.
Loi continues to have a ½ hour weekly session on Thursday of combined OT and Physio at Wizetherapy. Thanks to Dianne Calnan and Leigh Smith for providing the transport. Also thanks to Cuc Nugen for acting as translator.
Chris Meaton has continued to visit and provide English lessons for Mai a couple of times a week.
Loi loves the water (river, ocean or pools) and it won’t be long before he is swimming. Mai is very competent in the water.
Friday I intend taking Mai and Loi to Rottnest for the night.
Dick Johnston, a Rotarian from Ballajura whose wife is Vietnamese has also been taking them out.
Cyclone Loi (as Robert calls him) is behaving better, but especially when Mr Le gives him the look! However he still knows how to get attention, and then gives you a great big hug.
Wednesday 10th October - (JH) I have just returned from a visit with Dr David Gillett and Dr Ravi. Dr Ravi explained that from the liver biopsy, the liver was looking healthier and still repairing. To what degree this will continue he couldn’t say. However the outcome is that the liver is safe to proceed with the surgery.
They are planning for the operation on the 17th Nov, if everyone is available.
Loi is continuing to have weekly therapy at Wiztherapy. His concentration span and eye hand coordination is improving.
Loi’s fits have improved. Mai said he had a mild fit, about 5 minutes yesterday, but that was the first for about one month. He is certainly learning to take centre stage. I have seen him behave very well and at other time be very active and sometimes mischievous – like an active 5 year old. He is very quick at picking up sounds and copying what has been said.
Mai is doing well with her English, thanks to Chris Meaton and good that she is getting some attention. Mai loves to practice. She has been having headaches and not sleeping well. Not surprisingly! However, she isn’t complaining.
Monday 24th September - (JH) Last week the report came back favourable following Loi’s liver biopsy. So now again they will reschedule his operation. But when, I don’t know and we will wait to be told.
There is a Vietnamese lady here from Melbourne that has been very involved with fund raising for ROMAC. She has organised a Fundraising dinner for ROMAC with support of Chanh Giac Temple and volunteers on:
Sat 20-10-2007 Time: 6:30-10:00pm Cost: $30 per head (Child: $25)
Venue: Jade Dynasty Chinese Restaurant, 40 Francis St, Northbridge
The guest speaker will be Dr David Gillett who is the Plastic Surgeon performing Loi’s operation. If you are interested contact Jacquie or go to the Contact page on this site.
Monday 10th September - (JH) I really don’t know how to start this email.
It has been a very upsetting day! Loi’s operation has again been postponed.
On Thursday we had a tour of the ward, theatre and intensive care. Loi also had a pre op blood check and again his liver results were on the rise. (2 weeks ago things were normal). Everything seemed set. Last night there were panic calls to have them in PMH early with the interpreter. When they saw the Plastic Surgeon on Friday morning it was very emotional for all those there when the doctor told Mai it would be too dangerous to do the major operation as Loi could go into liver failure and bleed to death.
Thank goodness I wasn’t there as Dianne Calnan said everyone in the whole room was in tears as Mai was on her knees pleading with the doctor not to send them back to Vietnam. Thank you to Ross for his support later in the morning with consoling 4 weeping females and an active Loi.
Naturally Mai is very upset and disappointed. Friday afternoon there were many tears and hardly a smile.
They have reduced his medication and will review in 2 weeks. Also on Thursday we will visit the ROMAC paediatrician Ric Christie to discuss what will happen.
Wednesday 1st August - (JH) We are still waiting to hear definitely about 8th September for Loi’s operation. Their visas have been extended for another 3 month’s ie till the 3rd Nov.
Mai and Loi are patiently waiting and both are slowly learning some English thanks to Chris Meaton’s direction. If you visit, Mai has a work book with pictures that you might ask her to get out so she can practice her English.
Yesterday Dianne Calnan took them for another session to Wizetherapy with the speech therapist Gillian and the occupational therapist Paula. This time it was less stimulating for Loi and he was more interested in other things around him for a short while. It was easier for Gillian to communicate through Cuc (Cook) Nugen, who has provided some basic Vietnamese translation. However Loi loves to be the centre of attention. Wizetherapy are kindly donating their time and expertise and plan to see Loi for ½ hour sessions for the next few weeks. This will help Loi greatly by teaching him how to pay attention at school when he gets back to Vietnam.
Mai had her hair cut yesterday. She is using a treatment for her skin which is improving. Loi’s skin is also very dry and itchy. Mai is using some non soap cleaning product for bathing to try and help plus some cream.
Mai and Loi seem more happy and reconciled to the waiting time. They are very grateful for all that is done for them and it is a pleasure to be with them although Loi keeps you on your toes.
Monday 23rd July - (JH) Loi’s liver is now normal and so surgery can now progress and a tentative date has been set at 8th Sept if things can be organised through PMH with all the Dr’s and theatre.
Loi has had one session at Wizetherapy in Booragoon with the physiotherapist and speech pathologist. He has another appointment next Tuesday with the speech pathologist again and the occupational therapist.
Chris Meaton (wife of Club President Murray Meaton) has been giving Mai English lessons which Mai enjoys practicing.
They really enjoy and appreciate all the help they are receiving from the members of the Melville Rotary club, the Buddhist association and PMH. They are a joy to take out but Loi is better where he can be outside and run.
Monday 9th July - (JH) Loi’s blood test of last week continues to show improvement with his liver function so the steroids are working and the dose has decreased. This week it will be halved again and will finish next Sunday.
The tentative date for surgery is Sept 8th, so that is still 2 months away.
It would be very good if some Rotarians could visit and take Mai and Loi on an outing. They are still staying at the Buddhist Temple at 45 Money St, North Perth.
On Tuesday morning I will be taking them to “Wizetherapy” a new private therapy business in Booragoon that specialise in maximizing participation of children and young adults with disabilities. They have agreed to see Loi and advise us at no cost. Mrs Nugen has agreed to come along as interpreter.
Loi’s next appointment at PMH is 17th July with the neurologist.
Wednesday 20th June - (JH) Loi’s liver function tests are continuing to improve with his steroid treatment. They will now plan a date for the operation when everyone is available.
At this stage Loi and Mai are staying at the Buddhist Temple in North Perth with the hospitality of Mr Le. Visitors are always welcome and they appreciate it when they are taken out. It still maybe months before the operation.
Wednesday 13th June - (JH) As indicated at the last report Loi’s surgery has been postponed for a few months. From the 29th May Loi has been taking steroids which at his last blood test that was done on 8th June there was some definite improvement. He will stay on the steroids and Dianne Calnan will take him for another blood test on Monday 18th in the morning. We will see the Dr in the afternoon with hopefully more positive results. Then plans for the surgery can begin again.
Sunday 21st May - (JH) Last week Loi had a visit to the anaesthetist, a lovely lady, Dr Tessa Meyer who was concerned that it was not a good idea to proceed with the surgery, which isn’t lie threatening, while the liver hasn’t completely settled, as the chance of bleeding is increased. The 16th June is still a possibility but the surgery may be delayed for several months.
It has been decided that it maybe better for Loi and Mai to stay in a home so we are looking for a Vietnamese family to host them.
It is very disappointing for everyone but we just need to be patient and prayers would help.
Saturday 5th May - (JH) On Friday 4th Loi saw Mr David Gillett the plastic surgeon and we now have a tentative date of Saturday the 16th June.
We also had another blood test to see if the liver is continuing to heal. One problem with the operation if the liver isn’t functioning well is that there could be excessive bleeding.
If any Rotarian would like to take Mai and Loi out please do, just call me for details. Last Sunday I took them to my local Mass and even though it was in English all went well.
Thursday 26th April - (JH) Today Loi saw Mr Lee, the neuro surgeon and all is progressing depending on what David Gillett, the plastic surgeon says on the 4th May.
Mai reported today through the interpreter that Loi’s urine sometimes had some blood in it and that it was sometimes painful for him to urinate. We had a urine specimen tested and Dr Mae, the registrar from gastro came down and wrote a script for antibiotics. Just another little problem but easily sorted.
Loi’s fits have been under control but today he has 2 little ones but on questioning his medication ran out yesterday so we got some more today.
Also today I tried to get some shoes and socks for Mai and Loi as the weather is getting cooler. We weren’t successful but mainly because we had a tied grumpy boy. Probably due to the infection and the fits! We will get some on the weekend.
Saturday 21st April - (JH) Last Thursday we visited the Gastro specialist and had good news that the liver had nothing serious happening but the reaction does seem to be a reaction to one of the drugs he was given. He had another blood test and when the level is coming down then it would be safe to continue with the facial surgery.
Sunday 15th April - (JH) Last Thursday Loi was admitted to hospital mainly to have a liver biopsy as his previous blood test wasn’t much better. While he was under the GA they also did a CT and an MRI so plans for his operation can be made. They only stayed in over night and everything went well.
The results will be ready about Tuesday and we have a follow up appointment on Thursday.
Thanks to Charles for lending his ukulele which did help to entertain Loi who had to fast till 2.30 pm. He was very hungry and kept eyeing off other children’s food as due to a communication problem he hadn’t had anything to eat since 7.30 pm. Anyway we are one step closer.
It would be really good if some more people would like to take them out. (Please contact Jacquie)
Wednesday 11th April - (JH) Loi is going into hospital tomorrow for a GA to have a liver biopsy as the result of his last blood test wasn’t as good as hoped for so they want to get to the bottom of his hepatitis. While he is there they will also do the planned MRI & CT so they can plan for the operation he originally came for. Tomorrow night Loi and Mai will probably stay in hospital for the night. More news as soon as it comes to hand.
Thursday 5th April - (JH) Today I took Loi to PMH for review of his liver function. He certainly looks brighter and is full of “boy” energy. However his eyes still look a bit yellow.
He had another very quick efficient blood test but the results won’t be available until Tuesday. If they are significantly better just more time and patience and see the Dr again in 2 weeks. However, if they aren’t down then they are looking at doing a liver biopsy to find out what is happening. At least then they will be able to also do the MRI & CT prior to surgery.
They are getting a bit bored with being stuck at the temple, even though a lot of Vietnamese people call in they are not permitted to take them out. However, Rotarians are allowed. Those who would like to take Mai and Loi out please contact me for details.
Wednesday 28th March - (JH) His blood test on Monday showed some improvement in his liver function and so we are all just waiting patiently. He has another appointment next Thursday for another blood test. He really wasn’t happy last Monday with the blood test, more crying than singing this time. When I took him home someone at the temple told me he said “they are taking all my blood, there will be none left!”
Thursday 22nd March - Basically Loi's liver function is still too high but improving. Monday will show more. Another blood test! Until his liver can cope with a General Anaesthetic he can’t have a CT or MRI which is needed before the big operation. Some prayers would help.
Wednesday 14th March - Blood test and urine sample for pathology. Admitted to PMH because his liver function is to high and no further tests can be completed until this is reduced.
Loi and Mai waiting at PMH Emergency for a bed.