Friday, September 23, 2005

progress report

Ethan was enjoying the time at home. There was no sign he was sick and then I noticed ooze from his left ear. We weren't even home two weeks. He had a respiratory follow up appointment at Monash so an ENT appointment was made for the same day.

The ENT appointment went well. He needs a grommet in his right due to fluid behind the drum. The left ear hasn't healed. He has been commenced on ear drops to aid the process. Hopefully these do the trick and he can have a grommet inserted into that one too. He also needs an endoscopy. This will provide more information about his swallowing insufficiencies. We are on a waiting list for these procedures. Pre admission forms have been completed. There was only 2 lines for past history...I attached the three page spreadsheet!!

The respiratory appointment went well. We are to press on with everything we are doing. The chest xray was a little better. Hopefully the next one will be even better.

He remains happy and playful but spiking temperatures on and off. He is also pretty snotty. Nothing new really.

A speech pathologist from specialist childrens services has been seeing Ethan. Ethan has built a strong relationship with him. Hopefully now we can start making some progress with communication. We are going to work on more signing and the use of picture cards. He believes he is a long way off making sounds. Not the best news but a positive plan to aid communication and reading skills. Specialist children services went to the creche were Ethan attends and spoke in detail their roles in helping him. He has fitted in at creche really well. He has made friends with a couple of little kids and looks forward to playing with them.

Ethan has been booked in for an early education program at the Dandenong Valley Specialist School next year. He will go two days a week. He will also go into main stream kinder for social skills. We are not sure of days and hours, or whether he can get some assistance in the kinder room. The forms have been completed and now we are waiting. It will be a big load. Hopefully he doesn't keep getting sick next year so he can get the full benefit.

Photos soon!

Wednesday, September 07, 2005


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!