Life at home

William travelled to Sydney for a check-up with Steve Cooper yesterday. His heart seems to be doing everything right. There are no major problems and we were even able to stop one of his medications (only five to go!)
It was encouraging that Kate, (the speech pathologist we had been seeing who also saw William yesterday) thought that he was making small steps toward sucking. He is not really sucking yet but he will now often allow the bottle teat in his mouth without fighting it. One day we will look back on this and thank God that he is eating by himself. Until then we will battle on and try to look at the big picture so that we do not loose heart.
We have spoken to a gastroenterologist at Sydney Children's Hospital who we are seeing next month. He has asked us to make a few changes in William's reflux medication and formula so we are just waiting to see what effect that might have.
Apart from the crying and vomiting with most feeds, William is starting to show the normal little baby milestones that we have been hanging out for. He loves to smile and chuckles at the inane little noises his parents make at him. He loves his feet to be kissed and Liza thinks that maybe while he was in hospital last time, he learnt to put them up whenever they are within range of our lips.
We are gradually moving toward just having a normal family.

Home!

Yesterday William was five months old.
His oxygen was switched off and he lost one more set of tubes. He has actually been coping very well off the oxygen with resting saturations hovering around the 80% mark. He drops much lower when he gets upset. When he is blue... he is blue. (There's a country and western song just waiting to be written)
Today we were discharged from the Children's Hospital at Westmead and travelled home.
Besides fitting in the usual feeds, baths etc for William, we had to pack up our luggage and food at Ronald McDonald House. William also had to have another chest x-ray and an echocardiograph. It was exciting to be going home and so frustrating to be held up with so many things to do before we could start the journey home.
By the time we had everything organised and were leaving the ward, it was almost six o'clock. We decided to feed Tom and William before we got into the car. Our journey was further delayed only minutes after leaving when we came across an car accident and I stopped to assist an injured passenger until the ambulance and fire brigade arrived.
We finally arrived to home sweet home at about 10:00pm tonight and we will sleep so well tonight.

MRI scans and tummy upsets

Yesterday William did end up having his MRI scan. Prof Ouvrier came to tell us the results in the afternoon. It seems to confirm that the event was embolic and not a bleed into a cyst. William is now behaving completely normally though. He has no weakness at all and has had no seizures for almost a fortnight. He will probably need to be on the anti-seizure medication for about a year but hopefully that will be the only reminder of what happened.
His stomach did not take kindly to the omeprazole being ceased and the ranitidine being started. It was a relatively low dose of ranitidine that was commenced and William became increasingly symptomatic with discomfort during feeds. He started to have blood streaked vomit and this morning had a large vomit with quite a bit of blood in it. He had received one dose of aspirin last night but this was stopped today. His medication was changed back to the omeprazole again. It may not have been perfect but it seems to have been working better than what he was changed to.
William's oxygen is being weaned and this morning it was reduced to 0.1 litres per minute. He should be off it all together tomorrow. We are looking forward to loosing the last bit of ongoing medical therapy that is not part of what we will be doing when we go home. (It would have been lovely to get rid of his nasogastric tube but that will not happen this admission).
He has been allowed out of the ward a few times and so we spent quite a bit of time today in Ronald McDonald House. I really think he enjoyed it, we certainly did!

Small steps in the right direction

William is gradually improving. His vomiting is settling a little and he continues to put on weight. We have stopped adding calorie supplements to his feeds and whilst he still gets uncomfortable, he certainly seems to vomit less.
We were visited by the gastroenterology team yesterday. The crux of the message was that while William is gaining weight, they would be reluctant to be more intensive with any therapy. This was difficult to hear as we felt that his reflux is contributing to his feeding problems. Just to improve the chance of him resuming normal oral feeds seemed like a good reason for better treatment of his reflux from our point of view.
William will have some barium studies done later this week or early next week to ensure there is no anatomical abnormality.
We spent the morning waiting for William to have an MRA (Magnetic Resonance Angiogram) to further assess what has gone on in his brain. It was postponed once then cancelled to be rescheduled for later in the week.
He is still on oxygen and remains on a saturation probe connected a monitor but we lost the ECG dots and monitoring today. It is a visible step in the right direction!

Fathers' Day

It was great to spend fathers' day with all of my children. After a cooked breakfast at Ronald McDonald House, Liza and I went up to feed William while Marea looked after 'Liv and Tom. Both the other kids seem to be feeling the restrictions of staying in a hospital. They do love playing with the other children at the house but it is not like being at home. We went for a trip out to Featherdale Wildlife park yesterday and they loved patting the kangaroos, wallabies and even an echidna!
William continues to have the diarrhoea, abdominal pain and also he has increased his vomiting but his fevers seem to have settled quite a bit. He is still requiring a bit of oxygen to keep his levels at a satisfactory point.