Wednesday, October 21, 2009
Dane is getting worse. His little body is starting to swell up and all the blood is leaving his extremities- a survival thing the body does to try and survive.. I feel so helpless and so very frustrated. I know Dane's brain injuries would properly kill him if he had heart surgery but honestly I can't understand what a differences a couple of days would make. His brain needs six months to heal.
I am so scared that with every minute that passes Dane's heart will suddenly rupture and he will never get the chance to have the life saving operation that he needs.
Monday, October 5, 2009
The new line in Dane's leg is stopping the circulation in this leg and his leg has gone black. If they can't find the reason why, Dane could risk losing his leg. Thankfully it was a matter of repositioning it and the colour returned to normal later that day, Phew!
Saturday, October 3, 2009
Today was another difficult day, not that any of these days are easy. Today the family came up to say goodbye. Shaun's and my parents were there and so were our three other children. One by one I took each one up to the ICU to say goodbye and one by one I had to tell them that their little brother will properly not be coming home. I broke their little hearts!
Saturday, September 26, 2009
Dane had being getting paler and paler and today he was really pale, the nurse tried to reassure us but deep down I knew something was wrong.
Blood test had been taken and it was discovered that Dane was no longer making his own blood. He was taken back to the ICU for a blood transfusion. For a sick baby with a bad heart this was a very serious procedure.
Dane had an echo to day and they have discover the the infection had eaten a hole from the right atrium through to the left ventricle. But they are more worried about the area around the aortic valve, it has deteriorated very badly and is threatening to rupture, which would be fatal.
It has became very apparent that Dane will eventually have to have surgery the problem with that is with the bleeds to the brain, the brain really needs 6 months to heal. The drugs used for open heart surgery thin the blood, by doing that it would unclog the bleeds in the brain and Dane would suffer a huge bleed out in the brain which of course would be fatal.
Fortunately for Dane he was 'clinically' coping very well.
Thursday, September 24, 2009
Dane had survived the journey to the RCH and by the time we saw him he was hooked up to so may tubes, wires and monitors you could barely see him. The nurses were so nice to us, explaining what everything was doing to help Dane and all the while I was wondering when this nightmare would end.
The blood cultures still hadn't "grown" anything that could help the doctors find out what was wrong with Dane, apparently it can take up to a week. They had also detected a heart murmur which needed to be checked out but we were assured that heart murmurs in newborns were fairly common.
About mid-morning a cardiologist came from another hospital to do some tests on Dane. Afterwards we were told that Dane had an infection in his heart, not in the brain as originally thought. I didn't know if that was better or not but it meant another move to another hospital that specialized in paediatric cardiac care. But Dane was too unstable to move, his heart was stopping every ten minutes or so, because he had a complete heart bloke on the aortic (left) side of the heart. Finally late at night the transfer happened and again we drove to another hospital not knowing if Dane would make it through the transfer. At least this hospital was a little closer to home.
Tuesday, September 22, 2009
In the last 24 hours Dane had become increasingly sleepy and not feeding very well. At 6 o'clock that evening we decided we needed to get him to the hospital which is only 2 minutes away. Just as we were getting him ready Dane had a seizure, knowing I would get to the hospital faster then an ambulance would get to us I rushed up there.
We were admitted into the emergency dept. immediately and just as I got Dane onto the bed and was undressing him, Dane crashed!
He was having seizures all the time and he had stopped breathing. For the next four hours everyone was working desperately to save his life. I can't remember alot of this time, I went into shook but I will never forget the nurses picking Dane's little limp grey body off the bed and onto the paediatric warming bed. They keep asking if I understood what was happening, medically I did but I couldn't understand how this could be happening to my perfect little man.
When they finally had him stable enough to move to the Royal Children's Hospital, he was in an induce coma and on life support. The doctors told us that they really didn't know what was happening to Dane. He had a swollen brain, a very high temperature, they seem to think it was possibly Meningitis but until the blood test came back they couldn't be sure. But they were very sure that he was critically ill and may not survive being transported to the Children's hospital.
Unfortunately we couldn't be in the ambulance with Dane so my husband Shaun and I traveled to the hour long trip to the hospital not knowing if Dane would be alive when we arrived.