Hi there everyone!
This is about my little boy Theo.
When I was 20 weeks pregnant we found out our little boy had a major cardiac abnormality, we got rushed to see a fetal cardiologist who told us the outcome was very dark and to terminate the pregnancy... we disagreed.
Theo kept fighting and proved that cardiologist wrong. We had a long few months of our pregnancy as we were in every week for scans and then towards the end of my pregnancy everyday. I was meant to be induced in Bristol at 38 weeks.. but Theo had other ideas and decided he wanted to arrive a little early at 37 weeks!
He spent 3 days in Nicu and we were told to get all the family here as he wouldnt make it :( he was on a ventilator and we were told he wouldnt come off as his heart touched both sides of his chest leaving no room for his lungs.
The pediatric consultant pulled us to the side and said he would try taking him off the ventilator and put him onto optiflow and if Theo proved him wrong he will always be behind him and help with everything. Theo did it ! He came off the ventilator fine, we got transferred to PICU where we stayed for months!
They wanted to stent Theos duct open but we were told it was very risky even in the cath lab, We watched him go off to the cath lab and 3 hours later he was back on PICU, They couldnt put the stent in.. we were at stage 1 again!
Theo began getting iller and was put back on his ventilator.
All the surgeons in Bristol didn't want to do surgery as they said he wouldnt come back to us, so we asked for a second opinion.
In the meantime Massimo Caputo came back from America and looked at Theos notes, we had a phone call on the Tuesday morning asking to come to the hospital for a talk. When we arrived we were told that Theo would be going in for surgery the following day and have full heart reconstruction!
Surgery day came and we were told he would be back within 6 hours ... we started clock watching and it turned into 10 hours waiting!
Massimo came and talked to us and said at one point he thought he couldnt do it and nearly stopped but something told him to try again (thank goodness).
Theo had a mechanical tricuspid valve put into place and seemed fine. 1 day passed and everything seemed well until Theo changed colour and his sats started dropping, they did an echo and found he had clotted his valve:( - so they wheeled him back into surgery and the hours of waiting started again! He came back within 4 hours and started to recover again.
The next day was Daddys birthday and all the PICU team threw a little party for us. The following day drugs were getting turned off and all looked great until around 6pm .. they were doing a routine echo and found Theo had yet again clotted his valve:( - they took him for a live xray to check as his sats were fine! This confirmed it and he was rushed into theater. At 4.30am he was back on PICU they had tried 2 valves which meant 2 lots of bypass in one sitting !
The weeks passed and Theo was thriving .. he was off his ventilator drugs came off and we were on the ward waiting to go to Cardiff.
We got transferred over to Cardiff and got told we would be staying in for 3 nights so they could get to know Theo. On day 2 theo had his rsv jab to help protect him and we were told we couldnt stay with him that night that we would be rang if any changes ... so we came home (only live 5 minutes away).
The next morning, we came in and Theo no longer was taking a bottle, he was back on oxygen and was blue! We demanded an echo which took over 2 hours to get to us. When it did it showed he had clotted his valve and we were blue lighted back to Bristol. Our surgeon wasnt happy to go back in to surgery so we tried a drug called TPA - a clot busting drug which had awful side affects. You were meant to be on it for 6 hours and stop .. Theo was on it for 36 hours when finally one half of the valve was moving!!!
This was amazing he came back off his ventilator and onto his optiflow. We started to wean the drugs down and things were looking up. 2 days after halloween, Theo had a funny turn in the middle of the night we got told to rush down to PICU as Theo wasnt in a good way. He was shutting down and his blood gas was the worse a few of the doctors and nurses had ever seen .. we got told to choose there and then to let him go or reventilate him.
We reventilated Theo and found he had a major spleen bleed. He had all his body worth of blood replaced ! And his spleen is now inactive, no surgeon wanted to take him to theater incase he bled out so we waited for it to hopefully clot off (which it did) we finally got home in January!
Theo had an amazing stretch out of hospital until it got to September 2016 ... Theo was fine in the morning and like a light switch changed.
He became unresponsiv , green/grey in colour and very floppy .. we rushed him to the hospital which by now he had perked up abit but was grizzly .. we got told to go to our cardiac appointment (which was round the corner in the same hospital). We went to it and were told Theo had tonsillitis.
Towards the end of the appointment he started to vomit up blood and turning grey again. We rushed him to the open access where they pushed the emergency button everyone came running in, they were struggling for access for lines, he needed oxygen.
Theo turned very mottled and cold, he was in and out of consciousness and wasnt in a good way at all. They finally got an IO needle into his bone and on a ventilator he was being pumped with resuscitation fluid.
We got transferred to Bristol picu were we found out Theo was in septic shock, had abdominal sepsis, pancreatitis and a perforated bowel. All this happened in the matter of minutes at home!
They couldnt rush him into surgery as he was to unstable, they had to get lots of antibiotics into him and try to cool his core temperature but warm his perfarel temp.
A week passed and Theo was now in renal failure, it took 12 hours to get a line in for the dialysis machine. He was 5 litres positive and didn't look like our baby :(
His left foot was effected from all the drugs and pressure from puss pockets in the tummy. He developed myositis in his left leg and his left foot went gangreen. After another week the fluid was off him and he looked like Theo again. The surgeons took him into surgery and got the puss out and placed a stoma where the perforation was.
Another week passed and Theo wasn't getting better they did another abdominal scan and found the puss had come back so they had to go back in and place a tummy drain to get it out. Each day this got pulled back a bit when there wasn't much coming out.
Theo finally was making progress, his myositis had gone down and the black on his foot was going down. We managed to get up to the ward in November!
Theo was so lucky to be here and to still have his foot, he has lost his big toe but we can deal with that!!