Cardiac update

The start to term 3 has not gone to plan. It all started on the Sunday prior when Eth had another haemoptysis episode. I kept him home Monday to keep an eye on him but he was fine, so we sent him to school Tuesday. The school nurse saw him at school and started oxygen but he was well enough to stay the full day. On Wednesday, Eth called for the school nurse again but this time the oxygen wasn't helping. I drove to pick him up and had decided that if he was still yuck when I got there, I would go straight to emergency, but as usual he had picked up. Eth spent Wednesday night asking to go to hospital, so after no luck trying to chase his doctors, I planned to take him on Thursday just to make sure he was ok. I thought we would have to sit and wait as he seemed normal, but we were straight in. His oxygen levels were barely 60%. The things you get used to!

While in emergency he had another haemoptysis episode, he was short of breath and cyanotic. Blood tests and xrays were ordered and an admission planned. After 12 hours in emergency the ward finally had enough staff to open a bed. The plan with the admission was to monitor for any more bleeding, increase his sildenafil, cease his asprin, continuous low flow oxygen, rehydrate and fatten him up. If the bleeding continued he was to have a bronchoscopy.

He was pretty flat for the first 2 days but then seemed to pick up and be cheeky. We had some doctors saying go home and others saying we couldn't, so I decided we weren't leaving until I was satisfied we wouldn't bounce back in. We needed a plan and some support within the community. Our respiratory and cardiac doctors were both back on Monday, so I wasn't leaving until I saw them. Both covering doctors agreed with my concerns so we had day leave on Sunday and saw the doctors today.

I had a pretty indepth conversation with our cardiac Doctor, Sarah. His pulmonary hypertension is causing blood vessels to rupture and then he coughs up the blood. The cardaic tests he had a little while ago support that the pulmonary hypertension is worse. The walk test, even though he walked further than last year shows his sats after the 6min mark are extremely low. It represented the results of the stress test when his heart wasn't receiving enough oxygen. The increase in Sildenafil is the last (unless he puts on a stack of weight) as he was already on a high dose, now it is extremely high and like all drugs there are side effects we need to monitor. He already has all the minor side effects, so we don't want to push it too far. So far these changes have helped Ethan. He has more energy and isn't coughing blood. Here's hoping it continues..

The blood test show that his Hb and calcium levels are a bit low. There is no need for treatment for these at the moment but he will have another blood test in a couple of weeks to see how things are travelling. He needs to start high calorie nutrition drinks and we need to pump calories into him, but it is hard as he is still going blue during meals, not complaining of chest pain anymore, but pulling up short because he is blue and buggered so good luck to us (this could also be a side effect of the sildenafil). If he keeps losing weight we will look at night feeds via a nasogastric tube.

The pain Ethan experiences in his legs is also heart related. Not alot we can do. Just try and make him comfortable. He will require the use of his wheel chair more often to help. Low flow oxygen can also help with pain and headaches. For management and support at home I have re-emphasized the need for correspondance to our paediatrician and we've been referred to South Eastern Palliative Care. Not sure how long it takes for them to get in contact with us but the referral was faxed to them today.

Our little man has remained happy and cheeky despite what is happening to him. It's sometimes hard to believe he is so sick because he is always happy. It is usually at night when he feels the need to complain. We are not too sure what is around the corner, but we have tough times ahead (so the doctor told us!).

Haemoptysis

The school holidays started great. Ethan was excited about the day visits we had planned and catching up with all of his 'normal' friends. During the school term we are very busy so it is impossible for Eth to catch up with the boys he was friends with prior to them parting ways with school. During the first week we went to Ice Age 3. Ethan loved it. We arrived on Hanley time so had to sit down the very front. Ethan's laugh echoed through the cinema and had everyone laughing hysterically. His high pitched chuckle didn't stop until the credits rolled. He was very blue and buggered by the end, I had to carry him out of the cinema! We also went to the Star Wars exhibit at Scienceworks. Ethan loved it. It has renewed his love for Star Wars and episode 3 has been played over and over again since. Not to mention him trying to use the force to get his own way. Sometimes I go along with it and he actually thinks he's a Jedi. It's when he is using the Darth Vader lightsaber that I need to be concerned!




Building magnetic lego trains with Ez




Racing Cathy Freeman at Scienceworks

Ethan also had an ENT appointment in the first week. Both ear drums have big perforations but are dry and clean. He was given the all clear to start wearing his hearing aid again. His hearing was also tested and nothing had changed from the previous tests. The biggest thing to come from the ENT appointment was Ethan's black eye. I am still not 100% how it happened but he slipped and landed eye down on a soft chair. When he looked up his eye was red and swollen. As he realised, he became annoyed with the lack of sympathy coming from me and the girls, so he crawled under the chair. I finally persuaded him to come out to have him pull back and smash the back of his head on the chair. Geez did he scream.


Eth's shiner, shortly after the incident

Eth also got to catch up with Nanny Judy and Cousin Leisa. He didn't want to feel the baby kick but the next day spoke non stop about it!

The second week of the holidays started with a sleepover at Nanny Heather and Poppy Syd's followed by sleep over at Nanny Kaye and Poppy John's. He was very excited and happy to be going. It was at Nanny Kaye's when Eth started coughing blood. The first time I put it down to Eth's ears. Sometimes when his ears ooze, the ooze runs down the back of his throat and he coughs it up. I told Kaye not to worry, it happens. I was annoyed as he just got the all clear for his ears, but that's life. The next morning another phone call from Kaye, more coughing of blood and he was blue and flat. The thought it was something more than ears entered my mind. I tried to get an appointment with our paediatrician but he was fully booked. During my heated conversation with the receptionist I found out that our paediatrician, Chris, was covering the Warragul hospital so I decided thats where we were going. By the time I got to Yarragon, Ethan had picked up. He wasn't blue and flat, but we still needed answers, and with Ethan's past history we needed to know the bleeding had stopped. I knew with how he was presenting we would have to wait, but I knew all the tricks to get straight in. I made Eth walk to the triage desk so that the Triage nurse would panic about the low sats and his work of breathing. It would have worked a treat but by the time she saw us he was back to his normal. Take a seat in the waiting room and we'll be with you soon. Not what I wanted to hear, but he was looking his best and he was happy we were in hospital. We only had to wait about 30mins before we were seen. The resident looked him over, stated she would tell the paediatric registrar, but he wouldn't need to do anything and we will be going home. I didn't wait to have a bit of a once over and told to go. Luckily for us the paediatric registrar was more in tune with Ethan's diagnosis. He was very thorough getting a history and assessing Ethan. A chest xray was ordered and he rang Chris. My plan to see Chris had worked. He also rang our respiratory doctor. From all of this it was decided Ethan had to stay for monitoring. The most likely cause for Ethan to be coughing up blood (haemoptysis), was a burst blood vessel in the lung caused by his pulmonary hypertension. Ethan was hoping to stay but I kept saying we would be going, as he looked fine. So when the registrar told me he needed to stay, I got him to tell Ethan the good news. In true Eth style he asked for 5 nights! So negotiations started, I quickly helped the doctors, "Eth it's one or none, take your pick" He chose one! He didn't have any more haemoptysis episodes and we were allowed to go the next morning. Eth tried to negotiate another night but it didn't work!! The plan was for an appointment with our respiratory doctor in 1 to 3 days. It was hard getting an appointment but I managed to be very pushy and we had our appointment. His lungs are clear, no more signs of bleeding, no signs of infection and no asthma. All good. But we need his cardiac status looked at. Nothing we didn't know. We have those appointments coming up during the next month. So we have to wait until then. One thing all the doctors said during this was that he is very skinny. So high calorie food is big in our house at the moment.

Jo