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Damien's Habitat...

Jake














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We met Jake, his mummy Lee and his nanny Trish during Damien's stay at The Children's.  They became a source of strength and support for us both while at the hospital and afterwards.  Jake is a strong little guy who is continuing to thrive and grow.
Here is Jake's story written by his wonderful nanny Trish.....
















I would like to tell you about my little grandson Jake. My daughter Lee and her husband Dave were absolutely thrilled when Lee became pregnant with their 3rd child. Ashleigh was 11 years old and Jordan 3 turning 4 in September last year. They were thrilled when told it was a little boy and named him Jake from the ultra sound, his second name was a bit harder but they finally settled on Jake Logan Holmes. Every thing went well until the 24th week when Lee went to her specialist for a check up. He put the ultra sound on her looked a little worried. Lee said why is the heart beat going so fast. He said it could be a few things but he would send her to a proper ultra sound person with better equipment. Lee couldn’t get in to her for two days (it was a very long two days) we tried to come up with what could cause it, even got my dads stethoscope out to see if we could here Jake’s heartbeat. When Lee and Dave went for the ultrasound we were all quite worried, they been through a rough time earlier having a benign tumor removed  from her breast. It took about three weeks for the process and the entire test but thank God it was benign. They came back from the ultra sound in tears. I have to go to Melbourne Royal Women’s hospital in the morning there is fluid building up in Jake’s stomach he could go into cardiac arrest his heart beat is up around the 300 a minute mark.

How lucky were we if Lee hadn’t had the appointment at the time she did for the doctor and then for the ultra sound Jake’s heart beat might have been back to normal and we would have lost him then to cardiac arrest. Someone was looking over her.

They arranged the other two kids and left for Melbourne in the early hours of the morning so as to make sure they would be at the hospital as early as possible. Praying they would get there before any thing happened.

When they put the ultra sound on Jake’s heart beat was normal but after a while it started beating very fast again.

At first the doctors were unsure if Jake had a heart defect or even if he would live, they didn’t even know if the medication was going to help Jake.

 The doctors at the hospital told Lee and Dave your baby has SVT which is Super Ventricular Tachycardia. His heart would be normal and then just flick into very fast rhythm. They put Lee on a very high dose of didoxin  4 tablets day, normal person only takes one but so that Jake would get enough to control his heart beat she had to take a high amount. This medication affected Lee badly; she would vomit all the time, feel very unwell and dizzy. Blood test every couple of days to check the levels in her blood, and this is a girl that hates needles.

The doctors said Lee had to stay in hospital maybe till the baby was born, but she defied all odds and went home a week later. Lee was so sick I kept saying in the last few weeks “would Jake be strong enough if they did the op now” but Lee was stronger than me and said she wanted to give him the best chance she could even if it meant her being very unwell.

Lee and Dave went down to Melbourne on the 20th of June and Lee was operated on in the morning and our little man was born. Lee was awake for the birth, one wish she had to experience the birth of her last child with Dave by her side. The other two children she had been asleep and not seen the babies for half an hour or so.

Every thing went well for about 4 hours, the staff saying Jake would probably join Lee in her room soon. Then Jake’s heart beat started racing, they had to put a drip in his tiny arm and administer a medicine called adenicen. This medicine in adults makes them feel like they are dying as it brings the heart beat down very rapidly but only stays in the body around 10 seconds. Jake was transferred to the Royal Childrens hospital that afternoon. Dave went over to see what was happening and walked into the ward just as the doctors were reviving another little baby who had crashed. He is a pretty lay back guy but the last few months had built up on him and to see this next to his baby son shook him up really badly. We went down to visit Lee and Jake next morning, when we arrived Lee said Dave please get the car we are going to see Jake. My god Lee had had caesarean not 24 hours ago, but she was determined. So of we went, Dave dropped us of at the front door of the children’s, parked the car then we went up in a crowded lift, trying to make sure no one bumped into Lee’s stomach.

There he was a beautiful little baby boy arm with a plaster board on it supporting the drip, wires all over him monitoring his heart, his oxygen and his blood pressure. Next minute he was in his mummy’s arms with daddy proudly fussing over him too. Lee was released from the women’s hospital the next day, much to our horror, but she was right she belonged with her baby.

Jake’s doctor said you will only be here until we get his medication right. So we thought maybe a week. But that wasn’t to be, a couple of weeks later the good news arrive we are coming home. Lee had stayed with Jake all this time and Dave went down as much as possible, Ashleigh and Jordan were up here and needed their dad to.

Home they came for one and a half days, Jake went into SVT and was taken to the Albury Base hospital, then flew to the Children’s by air ambulance while mum and dad drove down in the car to meet them. Jake had a virus which had set off his heart rate. The specialist changed the medication he was on; Jake kept having SVT every couple of days so they kept changing the dose.

By this stage we had been told Jake has Wolff- Parkinson- White syndrome a form of abnormal heart beat. It is caused by a short circuit in the nerves connecting the upper chambers and the lower chambers, he has an extra pathway in the heart that troughs the rhythm out. Jake’s doctor Andrew kept a very close eye on him and even came in one morning and said put your hands over Jake’s ears. We just looked at him and he said again, put your hands over his ears. Lee did this and Andrew said if he doesn’t have any more attacks you can go home in two days. Every time they  were to come home the day before Jake would go into SVT, so Andrew said we wouldn’t tell him.

I went down to spend a week with Lee and Jake as Lee was getting very home sick for the other kids, but wouldn’t leave Jake down in Melbourne by himself, he was 5 weeks old by now. That week Jake started having more turns; to bring his heart back to normal rhythm we would place a bag of ice over his face. The cold and the fact his face was covered with plastic would sometimes shock his heart rate back to normal. Jake’s doctor had gone away for a week and left us with another very good doctor named Rob for that week. If the ice didn’t work they would use adenizen injected into his drip. Every couple of days he would have another drip put in as they would block up, he ended up they couldn’t find a vein that hadn’t been jabbed. Poor little guy would scream every time they tried. On the Friday Jake was in SVT and the ice wouldn’t work nether the medicine. Rob said after lunch he would send Jake down to ICU so they could administer a beta blocker which would drop Jake’s heart beat rapidly and then they would start a lower dose of this drug once his heart beat was back to normal. We asked why ICU was this a dangerous procedure, he said no but they preferred to do it in ICU an not in the ward as it was a stronger drug than they used on the 7th floor. Okay off to ICU around 4 o’clock. Rob came down with us and discussed the medication with the ICU cardiologist and asked if he was sure he understood everything, he said yes and Rob went back upstairs.

A nurse came in to put a line in Jake’s groin and had a lot of trouble, he was very upset. The so called doctor and his nurse were standing at the end of Jake’s cot looking very confused and I said to them, have you administered this drug before. The nurse said yes quite often but in a+e. Next thing I new she had gone to get a book, I looked at them and said what the hell is that an instruction manual. She replied it’s a drug book. I wish I had of listened to my gut instinct to tell them to stop and get Rob back down but I thought he is a cardiologist so he must know what he’s doing.

Please if you ever have that feeling stop what’s happening and ask questions till you a sure.  With what happened next I wish to God I had. 

They gave him the medicine and the doctor left the room the nurse was writing at the end of the desk. Lee said look at him mum he doesn’t look right, I said to the nurse is he okay, she said yes the medication can do that. I said he is floppy but she said that was fine. Then Lee said mum look at his colour, I said to the nurse something’s wrong look at his colour. Next minute a MET call was called, Jake colour just drained out of him. Lee let out an almighty howl she thought her baby was dead. My god she had protected him from 24 weeks when they found out there was a problem, been by his side every day from early morning to very late at night for the last six weeks. Doctors and nurses came from every where, Jake was in cardiac arrest. Finally they had him breathing again, put a tube down his throat and had him on oxygen.

We were called into a little room and told that the doctor had administered 40 times more medication than he should have. We nearly lost our brave little boy. Dad Dave, Ashleigh and Jordan were on their way down the highway, we couldn’t tell Dave what had happened incase he had an accident. Poor buggers walked on it not knowing anything. We were all in tears. We rang the rest of the family his other Nan and auntie came straight down. Jake’s heartbeat was still racing until 3 o’clock in the morning when it went back to normal. Thank God.He still wasn’t out of the woods and we didn’t know if there had been any damage. Next morning he woke up and drank a whole bottle of milk.

That day we went back up to 7th floor where we felt more comfortable. The doctors and nurses were great. We asked about every thing they did to make sure our little man was in safe hands. Jake was doing everything as normal. This made us feel a little better. They put him on another medication but this one had side effects, his skin could change colour if he got to much sun, it could build up pressure behind his eyes and a few other things. Anyway over the next 4 weeks they altered the dose and got him stabilized. Then we were allowed to go home. Jake has been back for a couple of nights since because his liver function was high. He has SVT about every 3 or 4 weeks but has been coming out of it with the ice. Lee is taking him back to Melbourne tomorrow Monday the 20th Feb to have a 24 hour halter put on to make sure he is not having little ones that we don’t know about. The incident with the so called doctor is being investigated at our request to make sure it doesn’t happen again. He wanted to say sorry. He nearly killed our baby and he wants to say sorry….

Asleigh and Jordan were extremely good kids even though there world’s were turned upside down. Their Nan Lorraine Pop Barry and Nan Johnson {who is 80 years old] did a wonderful job caring for the kids along with Dave who was running from here to there exhausted. Jake is now around 11 kg and is sooooo gorgeous.

 

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