Another post asking people's experiences with Starship made me wonder how many other Heart Children parents are on Ohbaby....

and are any of you going to the Heart Children Auckland Family Day this Sunday?

My baby boy Roman had open heart surgery at Starship on the 25th July 2009.

There was several things since Roman was newborn that we had brought up with midwife, plunket & GP but no one was concerned with the issues and just waved them off like they were normal - I guess in the scheme of things they are just normal things but all together they pointed to the larger issue...these were sometimes he was wheezy sounding when breathing and sometimes had harder breathing, the back of his head since birth would sweat so much that his sheet would be wet and just before his operation it was really bad - his head & back would sweat heaps, he has always hated tummytime, he would cry and cry and his lips would go a blue/purple colour sometimes, and of course his lack of weight gain, he was only 5.10kg on Tuesday 21st July. For the first three months he did really well with gaining weight, but over the last couple of months it just stopped, he was still gaining weight but very slowly....

Plunket got really worried with his weight and I asked her to write a letter to my GP, as whenever I brought up the weight the GP wasn't worried as he was feeding well and was gaining although slowly. So when I took Roman to have his 5 months shots, I asked about the plunket letter and said again that I was worried about his weight etc, so she said to put my mind at rest she will order a chest xray for him and refer him to a paed, but her exact words were "but you have nothing to worry about him, look at him he is happy & healthy, if something was seriously wrong with him he would look like a sick baby..."

So after the GP we took him straight to Starship to have the chest xray done, took a looonnnggg time to get done, we were in the waiting room for ages as they said that a starship doc in the emergency dept had to see us first to OK the xray even tho we had a referral, and wasn't till they actually saw one of his breathing attacks in the waiting room and then took his oxygen saturation level that things actually started happening (we were waiting from 2pm till about 6.20pm..), his oxygen level was low so they put the oxygen prongs on him, and we had the chest xray very soon after that. The xray showed an enlarged heart, but he needed more tests/scans to know what the problem was, so he was admitted into 23b - the childen's heart ward.

So that is why he was sweating heaps - as his body was working sooo hard just to work.  Explains why even though he was feeding well and often he just wasn't gaining weight, as his body needed heaps of fuel to work, so wasn't much left over for growing.....

They did the operation on Saturday 25th July - and it went well. He spent 4 days in PICU, then 3 days in HDU, then 8 days in our ward room. While he was in PICU they did several more chest xray's and saw that he had developed Pneumonia in his lungs, and his left lung had collasped. His surgeon was very blunt and said he was a lucky boy, if he didn't have the operation when he did he would have died - as the Pneumonia would have been too much for his already overworked heart & lungs....

Normally APW is picked up earlier than 5 months old, but they said he shouldn't have any lasting damage to his lungs, he is on drugs that to help the hypertension and for the blood vessels in his lungs to dilate and unharden the lung muscle etc. 

But we are soooo lucky that his heart condition was finally picked up, we don't even want to think about the "what if" if it wasn't picked up just in the nick of time!!  So scary!!!!

He was such a brave little boy all the way through, just took it all in his stride and looking at his happy face again you wouldn't think he had gone through soo much just a couple of months ago!!

 

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