History of Broc's Heatlh - every 6 months.

We went to the card every 6 months for a check-up.The week before the app I was a wreck.I was worried that they would find something wrong again or that his pressures were climbing again.No-one really understood what I was feeling.If there was bad news I was the one to hear it first and deal with the blow myself.I would drop Mark at his grandparents in the morning and make the drive to South Bend.It was the most stressful drive I had to make.My heart was pounding.We would walk down the hallway and wait for the news.When the tech came in I would ask about the blood pressure and again they would tell me the dr had to talk with me.Broc had some health issues to deal with too.He would get pneumonia often and many upper respiratory infections.He also suffered from reflux.The card assured us that many children with CHD also had many reflux issues.Broc was on meds for the reflux too.Anyway off to the echo room to hear the looming news.Many times his pressures were in the 3o's and all was fine and then other times his pressures would climb higher and higher and the card would say well maybe next time we are looking at more intervention.Most of the time I would breathe a sigh of relief and realise that all is well.

History of Broc's Heatlh - co-arc repair

Two weeks later we are off to the card again,thinking nothing of it as it should be a routine check-up for Broc.The tech says his blood pressure is a little high still and to carry on with the blood pressure meds that he gave us.The card comes in to examine Broc and says nothing.I started to worry when he kept checking the lower half of his body for pulses.He went to the left and then to the right and then down to the feet and back up to his groin.He still said nothing to me.I just sat there wondering what was happening.Is everything okay???

We were sent for the echo again and again the tech said nothing.I did ask some questions as by now I sort of knew what they were looking for and I was asking about his pressures.Again the tech said that she cannot tell me anything until the dr comes in.The dr came in to look at the echo and said that he was very concerned and that he would send all Broc's results down to Riley Hospital for the other team of cards to look at. He said that he would be calling us in a week or so.I went home not knowing quite what was wrong with Broc but knew that something wasn't right.Everyone kept asking me so how did it go and I said well I wasn't sure cause they said there was something concerning to them but never mentioned what.

I still remember it was a Friday cause we were at my husbands grandmothers funeral.The day was pretty glum already.We had a great lunch at Hacienda with the family and then all went home.We got the call we were dreading.The card told us that Broc had severe co-arctation and that it needed to be repaired at once.He told us that Broc would be in ICU for a few days and that the whole stay would be about 3-5 days.We were devastated at the thought of them cutting open our baby and him being on a ventilator in ICU.We again made the call to all the family members and told them that Broc is having another heart surgery.This time it was very serious.He was going to be in ICU.Monday came with a lot of phone calls from the nurses,hospital and surgeons themselves trying to answer any questions they could for us.

We left early Wednesday morning for his pre-op day.Broc went through many echo's ,blood tests and x-rays.We went to friends house that night to try and sleep.I was up all night worrying about how the surgery might go and what things can go wrong.

The day of surgery came we were up early.All the family was gathered in the waiting room with us.The hardest thing we had to do was getting him ready and hand him to the nurse again.Once again you think you will never see him again.I did everything I could to hold the tears back.We said a prayer and gave him to the nurses.This was another long surgery.The nurses kept coming out to give us an update.Finally they came out to say that he is getting set up in ICU and once they had organised him we were able to go in and see him.They tried to prepare us for what he would look like.When we walked into his room all we could see was pipes and tubes and IV lines etc.We could never have been prepared for that at all.

He was paralyzed cause of the ventilator breathing for him so to us he looked dead.He was very grey in colour.I touched his little hand and told him that we were there. It was a very long day for us.The drs told us that he did well in surgery and now they are waiting for his O2 levels and blood gases to stabilize and then they can take him off the ventilator.He took longer than they said to come off the ventilator.Every day was filled with sitting by his bedside reading a book or watching TV and pumping milk for him.Everyday they came in to tell us no he needs another day on the vent.It was really sad as we knew that as soon as he came off the vent things would start to get better for him.He finally came off the vent on Sunday and was moved to the heart unit.There he was able to have the bottle as well as tube feeding when he got too tired to drink.We knew he was much better when he was cooing and laughing at us.We were very happy when they told us that we could leave on the Tuesday.Getting ready to leave was a big ordeal as we had accumulated so many things over the last couple of days.The nurses and drs were absolutely wonderful.We left the hospital late that morning and were so happy when we realised that we were taking him home with us.

Recovery at home was a long one.It was going into the Winter season so we had to be careful about him getting sick.We saw the card again in 2 weeks for a check-up.Hoping all was going to be good this time.He said the surgery and repair looked really good and that he still wanted to see us every 6 months.