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.

History of Broc's Heatlh - cardiac cath lab

We welcome Broc Ethan Davis.Weighing 7lbs 10oz.He is a healthy little boy.Ten fingers and ten toes.Broc had a few hiccups with jaundice so he has bi-weekly blood draws.We had some concerns so we decided to change to another ped.The new ped was wonderful.He noticed a heart murmur.He told us to make an appointment to see a cardiologist as soon as we could get an app.So I called the card the next day and they said they were expecting our phone call.They had us come in on the following Tuesday.We thought nothing of it as Mark has a heart murmur and his seems to be fine.

Fast forward to Tuesday morning.I never knew what to expect.Didn't think that this was going to be the first of many visits to the card.The tech came in and took his blood pressure.I asked if his b/p was okay and she said that I had to wait for the dr to talk to me.We then went for the echo and again I was asking questions and again was told that the dr was not there but would call us if there was anything to worry about.The tech had a very serious look on her face and I could tell that she was trying to tell me something without telling me.

We went home and enjoyed dinner.No sooner had we finished dinner and the phone rings.The ped was on the line and said that the card was going to be calling us cause they had detected some abnormalities with Broc's heart. No sooner had he told us that when the card was on the line too and the ped said that he would let the card explain it all to us.Well I just sat there holding the phone as he is telling us that Broc has Severe Aortic Stenosis, an Abnormal Mitral Valve and that the left side of his heart is significantly enlarged and that he is booked for a cardiac cath in 2 days.We were shocked as parents.You never think anything is going to be wrong with your son. The card explained as best he could how his heart works differently to ours. What the procedure entails and how it will effect him.

Broc was running a slight fever that day and the ped also said that we need to take him to the ER asap so that he can be looked at.When we got there we told them that we had just been given the news about his CHD and that we are very worried.They wanted to run all sorts of tests on him as well as a spinal tap.We refused and said that we didn't want anything done to him cause he was scheduled to have the cath done in 2 days.The re-checked his temp and it was down so they sent us home with info. on Aortic stenosis .When we got home we called our parents to tell them the devastating news.My husbands parents came over to be with us and keep asking how does this happen?

We really felt helpless as we had no answers ourselves.The night before more family came over to see him and say goodbye.We held him the whole night and people passed him around like he was a precious gift.

Thursday morning we left really early in the morning as we live 3.5 hours away from the hospital.We had family going with us for support and to help look after Mark.

Once we got to the cath lab the surgeon explained the whole procedure to us and drew us pictures to show us what his heart looks like and what a normal heart looks like so we can compare the two.We said prayers and changed him into the hospital gown.The hardest thing we had to do was hand him to the nurse.He was only 8 weeks old at the time and we weren't sure if we were going to see him again.The procedure took 4.5 hours long.It was the longest 4.5 hours of our lives.During the waiting we were playing with Mark and keeping him busy so as to try and not think about the surgery.

The dr came out and told us that it was really scary for a while as his b/p had dropped into the 30's.The had to give him a bunch of meds to bring it back up again.He also said that his valve did not like the ballooning at all but it worked out in the end.He said that there was a little bit of co-arc but nothing too serious and that the card should follow that.