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Old October 3rd, 2011, 04:47 AM   #1 (permalink)
Timewarrior2001
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why i have been away - Graphic pics included work safe

Hi everyone,

I'm sure you are all aware, Joshua was born with a congenital heart defect which required surgical intervention to correct. He had a condition known as Tetralogy of fallot



The only way to fix this surgically is through open heart surgery. Joshua’s surgeon Mr Asif Hassan operated on Josh on the 20th June. The surgery lasted 7 hours as they found his heart was in a slightly worse condition than they thought. Basically Josh had to have a lot of excess muscle cut away from his right ventricle. This grew as his heart was having to work harder to pump the blood through the narrow pulmonary artery (shown as Stenosis on the diagram above).

We got to visit Josh briefly after he came out of surgery but it wasn’t until the next day we became fully aware of how poorly he was.
Here’s how Josh looked hours after surgery:







Later on Tuesday night, Josh took a turn for the worse. We were called back to Paediatric ICU to speak with Mr Hassan. He said that there was something wrong and he wanted to re-open Josh’s chest to check for problems. As we were there Josh’s blood pressure crashed and we stood by whilst the PICU staff fought to save him. This was without doubt the most terrifying thing I have ever seen. Watching your baby fight for life in front of you is an experience I never want to repeat. He eventually was stabilized and was taken down into theatre. Ged and myself were left to wonder what the outcome may be.

We spent hours walking the streets around the Freeman Hospital in Newcastle eventually at 3:00am we got the call, Josh was back from surgery and was stable. It seems that his pulmonary artery had kinked and caused back pressure in his heart, because of this his blood pressure had dropped to levels incompatible with life. I.E his blood was not getting pumped around his body. After a total of 13 hours of surgey in 24 hours, Josh was left with his chest open while he remained on life support, anaesthetized and paralysed he was to remain like this for 5 days.

I know it sounds weird, but during this time Ged and myself got to view Josh’s heart, it seemed so small. It’s a wonder that Mr Hassan was able to correct the defects.

On Saturday Morning they decided Josh was stable enough to have his chest closed. The procedure took about 1.5 hours.
On Sunday they started to reduce his paralysing agent and Josh started to show signs of movement, although he was still unconscious.

By Monday morning, they were reducing his sedation and Josh opened his eyes for the first time. Although still on a ventilator he seemed to be winning his fight for life. During the course of Monday they reduced his ventilation support, by that evening they told us they were going to remove the ventilator the next morning.
We arrived on Tuesday morning to see Josh free from his ventilator and slight more awake. Although he was still receiving a low sedation dose. The next day or so passed relatively uneventful.

On Thursday evening Josh was awake enough to have a feed from a bottle, the honour fell to Ged as she had been so upset during his time in PICU I was happy to take a back seat. However as Josh was moved back into his cot, his main line in his neck snapped. This resulted in a large loss of blood over Ged, Myself and the cot. Although not an emergency it was a very unsettling experience. We had to go and get cleaned up and they decided to move the IV drugs to canulas in his feet. When we got back the nurses looked very concerned. It appears that one of Josh’s pacemaking wires had removed itself. In the above photos there’s a thick blue wire this is the one that “removed itself” fortunately it was found that this wire was not the one that was pacing his heart. So he narrowly avoided another surgery.
During the course of Thursday night though, josh took another turn for the worse.

We arrived on Friday morning to find Josh back on a ventilator. He had gotten into respiratory distress through the night and an ultrasound and an X-ray had revealed a large build up of fluid around his lungs. The Doctors were discussing how best to deal with this and, with our input, it was decided to monitor him on the ventilator with fluid restrictions in place and see if his body re-absorbed the fluid. 48 hours later Joshua came back off the ventilator. He started to wake again on Sunday and by Monday when we arrived on the PICU unit, Josh was awake and alert enough to give us a smile when he saw us. This resulted in many a tear being shed by Ged and myself. The relief was immense.

On Tuesday Morning Josh was taken from PICU to the High Dependency unit on Ward 23 (children’s cardiac ward) This was a huge step for us as it meant his condition had improved a great deal. However our relief was short lived, During the course of Tuesday and Wednesday Josh was very unsettled, crying constantly, terrified of people approaching him and didn’t respond to cuddles or feeding. It was decided that he was suffering withdrawal of Morphine. If anyone has seen an adult go cold turkey, it’s a harrowing experience. In a child its terrifying and so distressing that Ged had to leave the ward. They started Joshua on doses of Methadone and Diazepam to relieve the symptoms. It took 24 hours before he settled down. In all it took 3 attempts to ween him off Methadone. He finally came out of hospital 5 weeks after he went in.

Since August:
Josh continues to improve now, he has a rather large scar down his chest but after everything he has been through his personality is amazing. At 8 months old he continues to develop albeit slightly behind where he should be.

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Old October 3rd, 2011, 09:58 AM   #2 (permalink)
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WOW!!! What a tough ordeal! I'm glad to hear Josh is pulling through. Mom & Dad must be mentally exhausted from this, the anxiety must have been off the Richter scale! That first smile probably will be one of your most memorable, forever! The relief that brought I'm sure was immeasurable. My daughter is now 15 months old and the thought of going through something like that I'd probably be a nervous wreck. But, glad he's pulling through. More priceless memories to come! Great picture of your boy in the suit. He looks so British!
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Old October 3rd, 2011, 12:13 PM   #3 (permalink)
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OMG! I'm soo sorry you all had to go through something like this! BUT I am SO releived and happy for the outcome! I wish Joshua an very healthy future with his two parents who love him so so so much. God bless you all.
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Old October 3rd, 2011, 02:46 PM   #4 (permalink)
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Jesus, fucking christ! Nothing like a full blow crying session to start my Monday. This is touching and that little guy is a FIGHTER! AMAZING! Hit me harder just because I'm a father of 2 young boys. My oldest spent the 1st 12 days of his life in the NICU and that was crazy. I can't imagine what you and your family went through emotionally. So glad he's on the upswing!
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Old October 4th, 2011, 01:57 PM   #5 (permalink)
Kirsten "Bruce Chickinson"
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My god, I can't even imagine the emotional anguish of your ordeal... But what a fighter he proved to be--for someone with a damaged heart, it turns out Josh has a lot of heart. What a miracle baby! (And snazzy dresser, too.)
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Old October 5th, 2011, 12:53 AM   #6 (permalink)
Steph Harris
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Wow, I can't imagine what it would have been like going through this but I'm so happy Josh pulled through. Such a cute little Trooper!!
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Old October 5th, 2011, 04:37 AM   #7 (permalink)
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Sooo cuuuutteeeee!!!!!!!!!!

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Old October 5th, 2011, 07:34 AM   #8 (permalink)
Timewarrior2001
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Thanks for all the comments guys.

Its amazing what can be done with childrens hearts these days.
Josua's outlook is great. The condition now repaired, wont cause him any problems with anything. The only downside is that in his late teens he will need a valve replacement done, but they do that via cardiac catheter now anyway.

Hopefully I can help spread the message that conditions like this are not the end fo the world and in most cases with the right treatment the outcome is great.
As much as we have been through with Josh, there were kids in the hospital in a lot worse state than he was. Whilst we were there a 13 week old baby underwent a heart transplant and endured 24 hours of surgery!!!!!
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We shall go on to the end, we shall fight in France,we shall fight on the seas and oceans,
we shall fight with growing confidence and growing strength in the air, we shall defend our Island, whatever the cost may be,we shall fight on the beaches,we shall fight on the landing grounds,we shall fight in the fields and in the streets,
we shall fight in the hills; we shall never surrender!
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Old October 5th, 2011, 08:50 AM   #9 (permalink)
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I'm glad to hear cases like this are not the end of the world because getting hit with that I'd feel like it is. I am curious how the whole medical thing works in the UK. Does the government pay for it all or you have insurance or?
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Old October 5th, 2011, 10:35 AM   #10 (permalink)
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All medical treatment on the NHS is free. But adults pay for prescriptions from the docs and for sight tests and dental work. Its ALL free for children under 16 years of age.

We have the option of going Private if we so wish but the levels of care are no different. You just get better private accomodation if you pay.

So Josh's surgery cost us not a dime, however we pay national insurance contributions from our wages, this effectively covers the NHS and welfare state, Currently My wife and I pay 12% of our wages in National insurance and about another 12% in income tax.


Given that it costs £3000 per night for the ICU bed alone, I think we certainly got our moneys worth with Josh
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we shall fight with growing confidence and growing strength in the air, we shall defend our Island, whatever the cost may be,we shall fight on the beaches,we shall fight on the landing grounds,we shall fight in the fields and in the streets,
we shall fight in the hills; we shall never surrender!
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Old October 13th, 2011, 11:38 AM   #11 (permalink)
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Glad to hear he's doing great!!
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Old May 17th, 2012, 08:06 AM   #12 (permalink)
Timewarrior2001
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I had forgotten all about this thread.

Josh continues to do well, he had another surgery on Dec 16th to widen his pulmonary Artery.









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we shall fight with growing confidence and growing strength in the air, we shall defend our Island, whatever the cost may be,we shall fight on the beaches,we shall fight on the landing grounds,we shall fight in the fields and in the streets,
we shall fight in the hills; we shall never surrender!
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Old May 17th, 2012, 01:30 PM   #13 (permalink)
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My god...you better believe I'll continue to pray for Josh, especially after everything I just read. You hang in there the best you can Time Warrior. Keep the faith...
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Old May 17th, 2012, 04:11 PM   #14 (permalink)
Kirsten "Bruce Chickinson"
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Josh is such a beautiful and happy-looking boy! You are blessed.
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Old May 18th, 2012, 03:25 AM   #15 (permalink)
Timewarrior2001
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Thanks CC and Kirsten. I am honoured to be the daddy of such a special little boy. He's extremely brave to have gone through all that surgery. Hopefully things are looking up now, small issue with his artery.....but we hope to have that sorted without them havig to open his chest again.

Josh is 15 months old now and because of his condition and surgeries is a little behing in his movement (not walking or crawling yet) Although he is making good progress. The best bit is that he seems to be a very intelligent little boy......that certainly didnt come from me or his mother lol.
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we shall fight with growing confidence and growing strength in the air, we shall defend our Island, whatever the cost may be,we shall fight on the beaches,we shall fight on the landing grounds,we shall fight in the fields and in the streets,
we shall fight in the hills; we shall never surrender!
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