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.
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.
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.
On the day Broc turned 2 he woke up with a fever of 103F.No other symptoms just very warm and lethargic.That was a Sunday.Monday I took him to the ped and he did blood tests,urine tests you name it he did it.He then said that he was a little dehydrated and if he is not any better by tom bring him back.We went home and gave Tylenol and Mortin and then fever was still up there.He was drinking only a little.Tuesday morning we took him back and he was admitted to the hospital for high fever and dehydration.The did find out that he his inflammation markers her a little high bu could not find where he had the inflammation.He was in hospital for 6 days.They also did a test for mono and that was negative. We came home and then started the monthly sometimes weekly fevers.We would go for blood draws and the same thing.There is inflammation some where in the body but we are not sure where.
August comes and again a high fever episode.We called the card to let him know and he thought maybe there was something to do with his heart.He called the ped and next things we know we are off to Riley Hospital for a few days.We saw a card and infectious disease dr.They did almost every test know to man and dr.
All they came up with was that he had an EBV infection and it will pass by itself but could re-act again when his immune system is down.Broc continued to have fevers every month and still no answers.
As a parent you hate to see your little one like that. They are really ill and no-one can help you or give you any answers.
We went to Chicago hospital too and saw a dr there and all they came up with was another EBV infection.
So we have learned to live with his fevers that went away for a few months and then came back again.
December of that year we headed back to Riley to see another heart specialist which gave us wonderful news that Broc's heart was doing really well and his pressures were as low as 22 for a mean and 50 for the peak.She also explained that he has a parachute mitral valve.
We left there feeling very happy that at least his heart was doing well considering you cannot live without it.
Once again we are walking down the hallway and Broc says mommy are we going to see my heart again on the TV.He is very excited and has no clue what I am thinking.We get through all his vitals which are good to me anyway and then in comes the card.He says Broc looks really good beside the pneumonia that he was just had again this year.I tell him that his reflux is really bad and that his fevers are back again.I also told him that he has had strep throat 7 times this year.He says despite all of that, Broc looks really good but we will wait to see what the echo says.The tech does the echo and I once again ask questions.This time she answers a little but still does not tell me what his pressures are.Broc is only concerned with the Toy story movie he is watching and nothing else.
In walks the card and sits down to view Broc's echo.He is very silent and keeps rewinding to watch over and over.I got a strange feeling that something was not right.He tells me to sit down.Then I know its bad.He says that his gradient pressure is at 48.9 and climbing to 50 and that the peak is at 92.I know that any number higher than 45 for a mean gradient is a bad sign.
He then tells me that Broc is looking at open heart surgery as his valve is leaking too much.Well my heart sank and I tried to hold back the tears.I said excuse me but I knew something was up and everyone was telling me to think positively.I really tried but in the back of your mind you know there can be bad news.I asked for a glass of water and a tissue.I really tried to hold back the tears but I was thinking of all Broc has been through.
The card says that he will send his reports and findings to Riley in the next day or 2 and we have to wait for his call. That day I cried on and off all day.I just wanted time to stand still and it all to be a terrible nightmare.
We got the call to say that thankfully Broc is still a candidate for a cardiac cath.His card in South Bend was not sure but the cards at Riley think they can definitely help him without OHS. We were so thankful to hear that news.Although we know there are still many risks that do go along with that too.
They did however tell us that this procedure could make his leakage worse and then we would be looking at OHS sooner than we want.
He did say that Broc would have to spend the night as we live so far away from the hospital and he would like to monitor him for a while.
Although a cardiac cath is not OHS , for us it is still really scary.There are many complications that can happen or they could balloon the valve too much and therefore blow it apart.It is a very delicate procedure.We are hoping for the best.Broc was really good this morning. He did really well with letting all the drs and nurses listen and prod him.
He was almost asleep when they took him back.I was really worried about that cause I was scared that he would scream when we left him but with the meds he was almost asleep.
He has been in for about an hour so far.
I will keep you updated as soon as we get any news.
He was in surgery for 3 hours and then 45 min for recovery.
He was really fiesty when he came out of recovery so they had to sedate him as he had to lay still for 4 hours and not move his legs otherwise his ateries could come open again.He does not like his IV's or his monitors.
He is playing with his monster trucks right now and his big doggie that Aunt Monica and
her family got him.
He had a chest x-ray this afternoon and is having an echo tom before we leave to make sure his heart is doing okay.
we are hoping for a good night.
About a week after Broc's surgery he was getting really tired and having no energy.We thought it was just him recovering from being in 2 hospitals and putting his body through all that stress. So we thought nothing of it but as a mom I had an inclination something was up as the dr said that he should be fine with in a few days. So I called the card and he said it has nothing to do with his heart as he just had the surgery and it should be fine.
So we accepted that as the dr should be right and we didn't want to question him.On Thursday I took the boys to the mall as they wanted to play at the play -place there.Broc started out fine and then about after running and playing for about 5-10 min came back and said that he was so tired he had to rest.So he sits down for a while and then goes back.That happened 4 times so I decided that he was getting really tired and we left. I called the card back again and told him what happened and he said that maybe he had a low blood count due to the surgery and to call the ped to have it checked out.
To us as parents that did seem reasonable that his iron count could be low.So Sat we had a full blood count done as well as a Thyroid test.The thyroid test was fine and the blood count showed that he was a little anemic but not enough to require meds.
Monday he was running with his around the house and had many tired spells as we call them.The same happened Tues and Wed. Wednesday I called the ped to see if I could talk to him about my concerns.He only called back later that evening and said that cause of him just having surgery he should not be acting that way and also that since he never had tired spells before the surgery then this was something new and had to be addressed. I asked him if a 3 year old could know when they were out of breathe and not act out.He said that 3 year olds will never stop for no reason as we all know.As we know we had to restrict all activity before his surgery and it was really difficult to do.The ped says to call the card first thing in the morning.
Thursday morning I call the card and leave a message and tell him that the ped said to come in.He asked what had been happening and I told him that we did the blood tests and they were fine.I told him about the spells too and he said come in right away.So I picked Broc up out of bed in his pj's and all and off we went.In the meantime Broc had spiked a fever of 103F 2am that morning so he was so hot with fever too.When we walked in everyone could see that he was not the bouncy little boy that was there a month ago.The card came in and checked him over.He did say that his murmur was louder than the last time he saw him but that could also be because of the high fever he was having.Anyway he said that besides the fact that he did not look well he could feel all his pulses and that was a good sign but didn't like the fact that he was getting out of breathe when he was really active.
So we go into the tech's room and she does the ultra sound.Broc is so sick he is not even interested in the DVD that is playing.He was very sleepy during the echo.After the echo the card comes back in to tell me that we are dealing with 2 separate things.
First he says that he is clearly ill and needs to see the ped asap to find the source of the fever as it is putting strain on his heart.Second he says that his pressures are back up to 50 for mean gradient and 100 for the peak.Those are a little higher than before he had his surgery.So clearly the surgery didn't work for him.He said that he either needs a more aggressive cardiac cath or we are looking at open heart surgery to either repair the Aortic valve depending on what it looks like or maybe even replace it.
Well, with that news I was sort of prepared for something like that as I knew something had been going on.I think as a mom when you have a hunch that something is not right you kind of prepare yourself for the worst but we were hoping that his heart was fine and that it was just going to be a re-assurance that the surgery worked and his tiredness was related to his sleep-apnea from the tonsils and adenoids.
As we left the office he was talking to the surgeons and drs at Riley hospital to let them know his findings and what the next plan of action will be.
For now we are waiting to see what will happen.
As for the fever , when I got home from the card Mark was telling me that his neck hurts him and I felt his head and he was burning up.So I ended up taking both boys to the ped.He checked them out and said that they both have strep throat.That is number 8 strep for Broc this year.
I thanked him so much for listening to me and being so pro-active with Broc.He did say as well as the card that if we had left Broc and not checked his heart he would be in heart failure in a weeks time.Especially if we had not shut down his activity levels.They said that he could have been playing really hard or running really fast and his heart would have given out.It is a really thought to think of but it's reality.
So once again we are house bound until Broc has his next surgery so as to keep him as well as we can.Both of the boys are on antibiotics.
We thank you all once again for all the prayers and e-mails that you have sent us.Although we may not reply we do read every single one of them.They are really encouraging to us.
Since we last wrote Broc has had more tired spells. I was walking in Walmart today and got the call I had been dreading.It was the card to say that he has spoken to Dr Hoyer who is the cardiac cath dr and he said that there is nothing more that he can do for Broc's heart.Our only option is for him to have his Aortic Valve either repaired or replaced depending on how bad it looks once they go in there. If he has his valve replaced it will be done with the ROSS procedure.You are welcome to look it up on the internet if you would like to know how that is done.
I had to try and hold it together as best I could while I called Mark and told him the news.I had just spoken to him 5 min before and he said well no news is good news.Anyway right now we are trying to hold our heads above water and function as best we can for the boys sake.
Broc heard the conversation and said am I having surgery?So I said yes.I asked him do you know what is going to happen and he said yes they are going to cut me down here and he showed me his chest and then the drs will fix my heart.Then I will have a scar on my chest.He is such a brave little boy to understand what is happening.
So he is scheduled for Open Heart Surgery on the 23 November at 6am.He will have a pre-op day at the hospital on the 22 November.
Well today has been a very stressful day.Broc was very anxious about the day and kept on asking if he can please go home.I think he is really feeling the stress of everything that is going on.
We just had an update to say that he is doing well.
He went under anesthesia very well.He has a few lines in him for IV's and other monitors. It will take an hour for them to get him on the bypass machine and then the dr will start the repair.
The dr has said that he is 90% sure that he can just repair his valve.
We discovered that there is a narrowing at the base of the aortic valve and they will have to correct that by cutting it and then putting a patch over it.
His mean pressure is up to 90mm for a mean gradient and the dr is hoping to get it down to 30mm after the repair.
Once he has done the repair he will he will do another eacho on him where they put a camera down his throat and they can see his heart through it. Once they are happy with the results of the echo then they will close him up.
So it takes an hour to geet him on the bypass machine and then another 3-4 hours for the surgery and then once he is done it will take another hour to get him off bypass machine and then another hour to settle him in the ICU.
We are all sitting chatting and having fun entertaining Mark. We have a lot of support and love from all the friends of the congregation.
We went back 6 months later and we were given the okay for a year.We are so happy. For now his heart is okay but he will need more heart surgeries in the future.
He will be having ilio-femoral bypass surgery in the Summer to correct the blockage in his arteries in his leg. We are still battling with his immune system and in the process of finding out more answers.Through all of this Broc endures many hospital stays and blood draws,but depsite all of these things he is a very brave little boy.
We have also since found out that his brother has an ASD and I his mom has a Mitral Valve leak. Thankfully we have not needed any intervention as Broc has.
