pneumonia

Where do I start?

continuing from the last entry....
Ethan had another appointment on the 18th of August with Dr Long about perforating the other eardrum and the cough not clearing. Dr Long couldn't do anything. Ethan was already on antibiotics and steroids. The advice was try and and get by over the weekend until he sees the ENT on Monday. If he develops fevers go to Monash as his chest will most likely be the problem.

On the Saturday Ethan had a temperature. It wasn't that high and he was coping alright so we didn't rush off to Monash. On Sunday he had some more fevers but was still coping with them well. As the ENT appointment was early Monday morning we decided to wait for that and plan to go to Monash straight after it. On Monday morning Ethan wasn't coping as good. We still went to the ENT appointment. Dr Bucchannan took a brief history from the last 8 months (we have seen him before so he already had the extensive history), told us he needs grommets and an endoscopy when he is well enough, rang Monash emergency and sent us on our way.

On arrival at Monash Ethan was even worse. The triage nurse took our details and told us to have a seat. This has happened before. We have a seat and a doctor comes and gets us straight away but not this time. When I realised this wasn't the case I was pretty annoyed as the triage nurse didn't even assess him. I went back and asked about the wait. She told me that it was an emergency department and the more serious cases are seen to first. I then asked her to assess his oxygen levels as he was very blue. She told me to have a seat. Another nurse came to take a handover at this point. After her handover she managed to get us in straight away. Ethan was pretty flat and not coping at this point. The doctor was asking about his oxygen levels as he looks fairly blue. I told him the bitch at the front didn't take them or assess him other than a temp which he didn't have. He was also pretty pissed and was putting in a complaint. Ethan was working extremely hard with each breath and needed oxygen. The doctor was overheard saying "You don't leave a boy in respiratory distress waiting for 1.5hours. His sats are in the mid 60's, respiratory rate and effort extremely high and his heart rate is also extremely elevated. Did you look at this boy?" Someone on our side.

Ethan was admitted with pneumonia. He picked up quickly with oxygen and IV antibiotics. On Tuesday the medical team were happy with his progress and wanted to send us home on oral antibiotics. I knew this wouldn't work he was still chesty and had been on oral antibiotics at home before getting worse. Still annoyed at the poor management Ethan was receiving I dug my heels in and said no. We were transferred from the medical to respiratory team. Finally someone who would listen. The respiratory consultant, Dr Armstrong has dealt with Ethan numerous times in hospital and also follows up Ethan's asthma management. We sat down and spoke at length about Ethan always being chesty and readmitting for these chest tune ups. Due to the amount of lung infections and the severity of them (2 ICU admissions due to pneumonia)it was decided Ethan would need to stay until next week at least on IV antibiotics, daily chest physio and when he picks up they planned to run scans and tests and get to the bottom of it. There were a few reasons as to why he might bounce back in all the time. The most likely are that he was aspirating or has immune problems. These are issues to do with his syndrome.

On Tuesday afternoon Ethan dropped his sats and was flat again. Lucky we didn't go home! The same doctor who wanted to send us home came into the room commenting on how he didn't think Ethan needed oxygen as he saw him playing earlier. I couldn't hold back anymore. I told him Ethan needed the oxygen and the reasons why and that they weren't taking it off until he clinically didn't need it and I was happy. The oxygen stayed for a couple of hours when he picked up again.

Over the next couple of days Ethan was up and down. Once he improved all of the scans were ordered. The first was a milk scan to see if he aspirates (when some fluid goes into your lungs when drinking). Ethan had to fast which wasn't an issue as he wasn't eating or drinking much anyway. He then had to drink a milk contrast drink. Straight after this he had to be scanned. He also needed to be scanned a few hours later. The later scan showed a patchy area over his right lung. He had aspirated. Ethan then had to go back the next morning to see if it was still there. It had gone.

The second scan was a video fluroroscopy. The same idea. He had to fast and then eat and drink different items smothered with contrast. The scanned him while chewing and swallowing. This showed no signs of aspiration. I was quickly told that even though he may not aspirate now doesn't mean the next mouthful he wouldn't. It showed that he has VPI velopharyngeal insufficiency. Basically he doesn't block off his nose properly. It also showed that he pools thin liquid such as water, juice and milk above his vocal folds putting him at risk of aspirating.

Even though this seemed like the most obvious reason of aspirating they wanted to rule out reflux. The next scan was a barium scan. He needed to drink more contrast and have more xrays and scans etc. This showed no signs of reflux.

The 24hour pH test was still ordered to look for reflux as well. This involved putting a tube (like a nasogastric) to sit just above the stomach. We don't have these results yet.

Ethan's immune function was also tested. We don't have these results yet.

During all of this he was losing weight. The dietitian was talking about nasogastric feeding. Ethan managed to avoid this but his weight is being very closely monitored at the moment.

The frustration with medical and nursing staff continued as well. A doctor commented about how he thought the scans would show nothing. If only. By this time I was too over it to argue any more.

The plan from here: To go home on thickened fluids (we add a vegetable gum to all drinks to thicken them), daily chest physio, oral antibiotics and come back in 2 weeks for a review.

So far we are managing at home. Ethan has made the change from thin to thick fluids well. It was a struggle at the start but has learnt to drink the slop now. He also tolerates the chest physio well. He has even learnt to enjoy it and use it in play. He gives Molly chest physio, well she does have a barking cough!

ear trouble

Since the last update...

Ethan went to see Dr Long on Monday. He began getting hot easily and then a moist cough developed as well as grunt breathing. As the xray still wasn't right a prompt visit to get on top of any pneumonia. All was well other than a noisy chest. After much discussion, the outcome was to prescribe some steroids rather than antibiotics.

He wasn't even out of the surgery for 30mins before he started discharging ooze from his left ear. A phone call and script left at the front counter for some antibiotics. Another perforated ear drum. How unlucky can he be.

On Tuesday before the script was collected he was very mucusy and his cough had worsened another appointment. Plan to continue with steroids and commence the antibiotic. Come back again if not getting better.

Today started off pretty good. The thought was maybe he'll get better without further intervention. That thought passed pretty quick when his right ear drum perforated. So another appointment tomorrow. Lucky he likes Dr Long!!

He is looking pretty blue at the moment. A result of having an infection and being clumsy. He was jumping on the bed and fell onto his cheek. He has a massive blue bruise from ear to nose. The fall hasn't stopped him though. He was caught jumping on the coffee table today. He sat in time out for 5 mins before he got up and did it again! He is very mischievous and naughty at the moment.




Attempting to hide in toy box.



And he wonders how they get scratched



Mum won't be mad for long when she realises I've made her a coffee!



Stacks On!

oncology appointment

Ethan had his oncology appointment and scans the other day.

He had to fast for the abdo ultrasound. I didn't think this would be a problem as he usually wakes in the morning and starts playing. It can be a real struggle to make him eat. He is also the last up so I thought we could all eat and he wouldn't know any different but that wasn't the case. Ethan woke first, and came to me with a bowl and the box of wheatbix!! Why is it when he is not allowed to eat he wants to? Very hard explaining "no you can't eat".

So to make it fair the girls and myself were made to fast too, we couldn't eat in front of him when he was so hungry. The ultrasound was at 8:30am so it wasn't that big of a deal. I packed enough food for breakfast and lunch so they could eat straight away. Ethan also had to have an xray and blood tests. Before the ultrasound they noticed the food bag. Tears everywhere. Not happy campers. The ultrasound took longer than usual. A new lady, three hungry kids, and a mother who needed a caffeine hit, not a good room to be in!!

He was shoveling down some food when they called for the xray. He wasn't happy about this and decided to tell them with a mouthful of food of course! Once he realized what was happening and that he gets to smile at the light he was very apologetic and even cuddled the nice apprentice who came for us. He sat up like Jackie, puffed out his chest and showed them how it is done! After the xray he apologized again.

The blood test was next. Another interruption in the eating cycle but they have the wiggles behind the door so it is OK. First he tells the nurses, separately of course, who each member is before he takes a seat and puts out his arm. This is where the girls begin to get upset. Needles and blood and its not fair etc but all is forgotten when the hear the word sticker. Ethan chooses the biggest Pooh bear sticker just to piss Adele. He smiles at her the whole time pointing. Adele and Erin push, shove, scratch, hit and miss out. More tears from the girls!!

The kids polish off all of the food before we get upstairs. They have full tummies, Sonia, Katrina and Kate upstairs. Happy campers finally!

While I am still getting through the door gasbagging Kate has weighed and measured all three kids. Ethan put on 1 kilogram and grew 1.5cm. We were all pretty excited until Kate told us Adele's measurements. She is officially taller than him. All was forgotten about the pooh bear sticker as "Me taller!"

The waiting room was busier than usual but plenty of activities and games so I could finally sit and relax. There was a girl in the waiting room, we had run into her during our scans. I had never seen her before so she was obviously a few years off treatment. Leukemia kids don't have ultrasounds and chest xrays, must be a solid tumor, maybe kidney?. I pulled out my badge and began questioning! The girl had her left kidney removed when she was four (Now 9). An amazing morning swapping stories with the adults in the room. One thing that came from it is that....We are extremely lucky.

We saw Peter and all is good. No signs of cancer. Still some signs of pneumonia. Another appointment in 3 months. I spoke to Peter about kidney tumors and finally meeting someone else. Over the last 11 years there has been an average of 1 diagnosed every year (in Victoria).

ENT review

Ethan's left ear was still discharging at the time of review. A change in antibiotics and some more ear drops were ordered. The change in treatment wasn't really doing much when I noticed a bloody discharge from his right ear. Another GP visit, more ear drops and a referral to an ENT (ears, nose and throat specialist)requesting his opinion about grommets (tubes in his ears). He has had 5 perforated ear drums since feb, not good for any one especially a boy with speech delay. We have an appointment in a few weeks.

Ethan has also had his developmental assessment. This was conducted by an early intervention worker and a speech pathologist. It was very interesting. They will send out a formal report. However they did make some comments on the day; "His chronological age is 42months the assessment placed him at 34months", "His visual capacity is very good", "He is good at matching shapes and colours", "He lacks some problem solving skills", "He has good concentration". Overall I was pleased with the intense 2 hours.

The speech pathologist has recommended Ethan have a full ENT review. (This will fit in quite well as he needs the ENT for his ears. He isn't sure about a couple of things and would like the review to hopefully rule out throat/nose problems. He has also given us some exercises to try and teach Ethan how to move his mouth and tongue. After he masters these exercises he can move onto exercises to help with sounds.

Other than the ear infections, things have been pretty positive.

mycoplasma pneumonia

Ethan's chest xray showed right middle and lower lobe and some left lower lobe changes. With a temperature and an increase in breathing we were referred to Monash. At Monash they did the usual blood tests and commenced IV antibiotics. They diagnosed mycoplasma pneumonia (for those not medically trained it is more common in teenagers than little tackers). The pneumonia wasn't sensitive to the oral antibiotics he was taking. A new antibiotic was prescribed and we were discharged. Only a two day stay. The alkaline phosphatase is back to normal :) and his hb is 150 (still trying to get to that 180 mark)

All was going well at home. He was half way through the antibiotic course when he had another temperature. Another doctor visit, another perforated ear drum (Same ear as the previous three) and more antibiotics. He has been on some sort of antibiotic for well over a month now. We have to go back in a couple of days to monitor the healing and to get a referral to an ENT specialist.

He has missed more speech therapy and creche. He had the worst of it during music group holidays so he didn't miss any of that. This term at music group he is to attend by himself. He had his first self lesson last week and apparently went well. We are relying on friends to drop him off and pick him up due to the time slot. Lucky for us he has always been easy going and things like that don't bother him.

Tonight we are all going to the Lion King. VSK managed to get us 5 tickets. Erin (who has already seen it thanks to challenge) and Adele are very excited, not too sure about Ethan though. He's not too fond of loud things (other than his poppy) so it will be interesting. When we saw puff the magic dragon he clung to me like a koala and this is a lot louder!

sick kids

Ethan had the follow up appointment with his paediatrician last Wednesday. It went extremely well. The antibiotics had done their job and his chest was clear. He didn't need another script and we don't need to go back for three months. All pretty exciting after a month of infection.

The high didn't last long though. He woke with a temperature Thursday morning. To cut a long story short, all 3 kids have been unwell for the last few weeks. One gets over it and another gets it etc. They all had GP appointments today. Ethan has an ear infection and most likely pneumonia. He has to have a chest xray in the morning followed by another doctors appointment. He has been commenced on oral antibiotics and can stay at home for now but the plan may change to IV antibiotics depending on the xray result and whether he has picked up at all since today. (The GP was happy to refer him to monash today but we decided to see if the oral antibiotics would have an affect first).

He has missed a lot of creche, music group and speech path due to being sick so hopefully we can get on top of it and he can make some progress in these areas.

pneumonia

Since the last update;

More antibiotics for the ear infection, a few days of gastro and bronchitis, so even more antibiotics.

He finished the course of antibiotics for the bronchitis but something wasn't right. He was grunting a lot and sleeping more but when he was up and about he was happy and playing like nothing was wrong. Was something not quite right or was I being over reactive? We saw the paediatrician and Ethan most likely has a form of pneumonia! We discussed the plan of attack and it was decided to hold off with the xray and try more antibiotics first. I was given the xray slip to get done if I felt he needed it. He has another appointment next week to keep an eye on it and if it isn't any better he will need to have an xray and blood tests.

Even though he has been sleeping more and grunting he is coping extremely well. He is still active and gets up to plenty of mischief. He still attends speech therapy both at group and one to one. He really enjoys both. Not too sure if we are wasting our time and money though!!

Luke will post some photos (as I still haven't learnt how)tonight or tomorrow.

cardiology appointment

Ethan had his cardiology appointment on Tuesday. His oxygen sats managed to creep up to 78%. They are not going to do anything about this; The same issue, we can change the conduit but can't close the VSD. They would like him to sat higher but they don't have many options. Dr Jim was very pleased with his progress since our last appointment and he doesn't need to see him for 6 months unless we start to worry about his progress. I spoke to him in detail about low sats and development and immunity etc. He seems to think the low sats won't hamper him too much, the 22q11 will be a bigger issue though.

His radiotherapy appointment was on Wednesday morning. Dr Wheeler is happy with his abdomen and how his organs have coped with the radiotherapy. They wanted to arrange scans and follow up appointments every three to six months. I mentioned Dr Downie was scanning every three months, no need to double up, happy for an appointment in 6-12 months. On leaving, an appointment was made for the 7 June 2006! (Dr Downie can correspond with them if there is a need before the 12 months!!).

He has another GP appointment today as his ear is still oozing. I am assuming more antibiotics. He still has no pain and has not had any temperatures.

Respiratory - Annual follow ups
Radiotherapy - Annual
Cardiology - every 6 months
Oncology - every 3 months
Paediatrician - every 3 months
Speech - weekly
Music - weekly
creche - weekly
GP - too bloody often!

But he is getting there.

june update

Since the last entry Ethan has had a couple of respiratory appointments. Dr Armstrong changed the asthma preventer (seretide instead of flixotide). This has helped, he hasn't had a major attack since. He was also commenced on a nasal spray for a month. I thought this would be awkward to give as most kids don't like the feeling of it, but I tell him it's time for the spray and he points to where it goes and after the first nostril he points to the other nostril. He is very good when it comes to taking medicines. Dr Armstrong is happy with his progress and has put Ethan onto annual appointments!!

The oncology appointment went well. The abdominal ultrasound and chest xray showed no signs of cancer. The chest xray showed that his heart was bigger than average and that he has had heart surgery...it is amazing after all this time that the xray people finally comment on such abnormalities!! The blood test was normal other than the alkaline phos which is still extremely high. Dr Downie is happy with his progress and we don't need to see him for 3 months when he has the same tests all over again.

Ethan developed a cold which increased the amount of snot, it started oozing from his ear! The GP diagnosed another perforated ear drum (same ear as last time). He has nearly finished his antibiotics and his ear is still running like a tap. He wasn't having fevers or he wasn't in pain, the only reason I knew was because of the ooze from his ear. He is quite a strong little boy.

Music group is going great. He enjoys going and he has even started to do the messy play. We are still waiting for the developmental check. It has been put on hold a little as the lady who runs the music group is one of the ladies who comes out. She advised us to start him in creche, this will help his social skills (advance his talking and play skills). On a Friday he goes to the creche up the road. He is in with the pre kinder kids. The first day was hard for me to leave him as there was a room full of big kids playing and little Ethan watching, none of the kids knew what he was signing! I knew the first day would be hard for him. The creche has been very supportive and have worked really hard to make him feel welcome. They have had training in makaton signing and have also learnt some of his made up signs so he has fitted in quite well. He has adapted really well and loves going.

He hasn't been to speech therapy for a while now. He will have a session next week. This will be good as he is now trying to babble a little so hopefully we can get some exercises that aid this.

The plan is for Ethan to complete 2 terms of music group and finish out the year at creche and then next year he will attend the Dandenong Valley Special School early intervention program (2 full days) and also do "normal" kinder (10 hours). So he will be very busy developing and catching up. This will depend on the final outcome of the developmental check but that's what is advised at the moment.

Evil Canevil graduated from the small chairs to the kitchen chairs, couch and coffee table! He has really started to climb and be more active. I try to encourage him to play outside on his bike or on the slide but it has been too cold especially with his ear. He eggs Adele on and vice versa, they are double trouble. We have two naughty mats!!

Finally here are some photos.....



Evil Canevil - leaping off the chairs



First post-chemo haircut



Tucked in to his new Thomas bed, thanks to Leisa

evil canevil

Ethan's paediatrician appointment went reasonably well. The alkaline phosphatase is even higher, it's above 4000 now. The blood tests have indicated that it is coming from liver not bone as first thought. The paediatrician isn't too fussed and he seems to think it will come down by itself.

Ethan has follow up appointments over the next month, (with all of his doctors) so we will get to the bottom of it.

Ethan has an appointment with the respiratory doctor tomorrow (Dr David Armstrong). The snotty nose is still hanging around playing with his asthma. It is a part of his everyday life, lucky he knows no better!

His oncology appointment (Dr Downie)is next week. The usual tests have been ordered; Blood tests, abdominal ultrasound and chest xray. This is always a nervous wait, even though they don't expect to see anything!

He has a cardiac appointment (Dr Jim) on 7th June, Radiologist appointment (Dr Wheeler) on the 8th June and another paediatrician appointment (Dr Smith) on the 29th June.

We are still waiting for the developmental/speech check. This should also be carried out during the next month.

Hopefully after all these appointments, everything settles down and we have all the answers!

He is still attending speech pathology and music group. He enjoys these and is making progress.

A physiotherapist review was carried out. Ethan is coming along well in this regard. The foot drop is getting better and they don't need to see him again. He has become a lot more active. He rides, runs, jumps and dances. He is also quite a little dare devil. The other day he pushed all the chairs to the kids table in a row (1-4), placed the little bob couch at the end of the row, went outside grabbed his bike helmet. He then proceeded to climb up chair one, he ran across all four chairs and dived onto the couch. I had a heart attack and he had a laughing fit!

He has also learnt to climb. Hopefully he doesn't graduate from the small chairs to the dining table!


(photos of evil canevil will be posted soon!)