A trip to the ER

Broc has been running a fever for 2 days.Very low to start with and then it got higher and higher.Tues morning he napped around 10am and was very quiet the whole day just laying on the couch.He then fell asleep around 5pm.Not eating and drinking much all day.His eyes were very glassy.He also developed a weird rash on parts of his body.We are not sure if it was the antibiotic that he was on for his strep or something viral.

We called the ped and he was full so he said take him to urgent care.Urgent care said that they could not handle his case.The dr never even looked at him at all.never listened to him.Nothing.....

We arrive at ER and they take us in straight away as I had told the U.C. Dr to call and make sure we go back as soon as we get there.At least that was done.The looked at him and clearly they could see that he was sick.He just layed there. His eyes were still glassy and very red.They drew blood and did a chest x-ray.

Broc was sleeping through all of this and poor Mark and daddy Mark were falling asleep too.

The dr came back and said that he wanted to show me something.He showed me that he has pneumonia on his lung.They said that he needs IV antibiotics for it.We had to wait another hour for the meds to come from the hospital pharmacy and then they came and put an IV in him and hooked him up.

We waited another 1/2 hour for his meds to go in.By this time little Mark was beyond tired and daddy was sleeping on the desk in the room.Poor daddy gets up at 4.30am for work.That would be in 5 hours time.

We finally left the ER at around 12am. Neither of us had eaten anything as he we headed out as soon as Mark came home from work.We came home made some toast and went to bed around 1am.

Broc is seeing the ped today for a follow-up and a strep test too.The pulm thinks that he could have a flu virus /para virus too.I will update later on today.

Another strep infection

Sorry I took such a long time to write back.Things have been crazy again as usual. We ended up seeing the card and he said that he looked a little swollen.He was concerned about fluid being around his heart.He had an echo done and all was wonderful.We were so happy.The best news we had ever received was that his surgery was a success and his pressures are lower than they have ever been.His mean gradient is down to 16 and his peak is down to 39.

The card did feel that his other symptoms need to be looked at. We made an appt with the ped that afternoon and Broc was tested for the flu and strep.And guess what came back positive.You guessed it , the strep.Broc is on another antibiotic and has another cough for which he is on breathing treatments 3x a day for again.

Broc will be having his tonsils and adenoids and possible ear tubes done on the 4 Feb.We are really looking forward to that day as we are hoping that it will help in decreasing the amount of infections that he keeps getting.

For now Brocs heart is doing really well and we are hoping that his surgery will last him about 5 years maybe more before he will have to have another heart surgery.

Not feeling good

Yesterday Broc did not eat well nor drink much.He was so pale he was green.He peed a lot but drank very little.He was also complaining of lower backache.He had very low energy in the morning and then perked up later in the day. By the end of the day I had changed about 6-8 pee diapers but he only drank 2.5 cups of liquid.He is also a little puffy in his face and around his eyes.

I am really concerned about his kidneys or something else going on with him.I called the ped and he said call the surgeon.So I got hold of the surgeon on call and he said see you in 10 min.I told him that we are 4 hours away so that was a little impossible.He then said give him an extra dose of lasix to see if that will help.By 9pm last night he still had not peed.He did not sleep well last night at all.He moaned the whole night.

The surgeon then said that the next best thing is to call his reg. card in the morning and see him.So I am waiting for 8am so I can call the card to see what he says.

I will right an update as soon as I hear from him.

Drs appt. with the ped

Broc saw the ped today for a check-up.He said that he is doing well and his color is looking better.He is still having some issues with his chest so he is continuing with his breathing treatments 3 times a day as well as his nasal spray.He is still having pain with his chest and now has started to have backache. He had a slight temp again today but nothing too serious.The dr said that he may still run a slight temp while he is recovering.

He is still out of breathe sometimes but the ped said that his heart has to learn to cope with the increase in blood flow.It will take time for his heart to get used to it.He still has a heart murmur but not as significant.

He sees his cardiologist on the 13th Dec for an echo and to see how his heart is doing.We will know what his pressures are then and how well the surgery helped his heart.

We are home....

We came home Sunday afternoon.The journey home was uneventful. Broc only needed pain meds once we got home.He was very happy to see his dad and brother. They played really nicely once we got home.

Today Broc was having a lot of trouble breathing.He coughed almost every time he took a breathe.He was also out of breathe a lot of the day and his heart rate and resp. rate were running fairly high.

I called the ped this afternoon and he has given Broc another breathing treatment to take 3 times a day.They are hoping this is going to help him.He is realizing what his limitations are when he is playing.

He sees the ped on Friday and then he sees the card on the 13th. I hope we will have good results with both appts.

A bad night.....

So we hardly slept last night.Broc was thrashing the whole night and calling me.Eventually I climbed in the bed with him and he settled for a little while.We have discovered that he had a reaction to the codeine in his pain meds so no more codeine for him.

He woke this morning not looking good at all.Come to find out he has a fever not very high but never the less a fever.He is coughing really badly and of course when a nurse or dr walk in he stops so they think he is hunky dory.

His chest x-ray was good this morning so the fluid that was there yesterday has gone today.The patchy places on his lungs have always been there and the pulm. drs think that it is inflammation from his reactive airway disease as well as the relfux, so he will be on breathing treatments from now on.

His heart rate and resp. rate are running really high today.They have remained like that since he woke up this morning.His blood pressure was a little high too but as usuall the nurses say nothing to worry about. As a mommy of course I am glued to the monitors to see how my baby is doing.After the second time the n.p. came in she realised that I am really concerned about his heart rate and said that she is keeping an eye on that too.

He had labs drawn today and they are looking very good.Actually exceptional for someone who just had O.H.S. Even the drs are amazed at how good they are.

They are doing them again tom as his WBC was slightly higher than his normal count.
He is not eating or drinking anything today.My baby is really sick........

I have told the drs and nurses that I /we are not leaving until I am completely satisfied that his heart rate is stable as well as his resp. rate and I am also not taking him home with a fever.

The drs and nurses have realised that I mean business when I say that I want him well before we leave.They have also said that they are not going to rush a person out of here cause they might need a bed.

I feel that if anything should happen we are in the right place. If anything changes I will try and keep you all posted.I will def. let Mark know if anything does so if you are still concerened please give him a call.

Thanks again.Love to you all

Another day

Today he is eating and drinking better.Still not 100% but better than he has been. Hi sblood pressure seems to be stable now as well as his O2.
We all had a great night last night.Broc slept for about 12 hours with little interuptions.Poor guy is on so many meds when he sees the tray of them he wants to run.It will be a challenge for us when he gets home.We will have to make a game of it or something.

He is still having his breathing treatments as he is still coughing very badly.He is also very congested so they added a nasal spray to make things jsut a little more complicated for me.

He had another chest x-ray this morning and are waiting for the results.As of yesterday he still had grey patches on his lungs and his lungs had inflammation.

We are waiting to see if maybe his chest tube can come out today but not very hopefull as he is still draining quite a bit from it.

He still has 3 iv's in him too. Which they keep for meds and other things too.

Daddy and Mark went home late yesterday so it is just my mom and I here. I really miss them so much but I know there are things that need to be done.

Little Mark was a super star.He was so concerned and loving toward his brother.In the PICU he was stroking his feet as that was all that we could touch on him for a while. When he was playing in the lounge he was so good and polite to others too.Markie mommy wants to say that she is so proud of you for being such a BIG brother.

If I have any more news later today I will post another update tonight.Broc is resting now and I will be attending an asthma class that is given by the hospital today so that we can learn how to better manage his pulmonary issues that we are going to be facing.

Once again thanks for all the support we have got.Telephone calls,cards ,prayers ,thoughts etc.Especially the ones that have travelled so far to come and see us.We love you all.

A scare......

I was walking into the PICU to see Broc and the critical care dr and another person ushered me back to the lounge cause they wanted to talk to Mark and I.He told us that they had a scare where his blood pressure dropped into the 60's for the top number and stayed there for a while while they were monitoring him.They had to give him some things to bring his pressure up again to a good level.

They said that it could happen again later so we are spending the night in the PICU.He will not be released from the PICU until his blood pressure issues can be resolved.He ate half a grilled cheese sandwhich for lunch and is drinking some liquids.

He also has some more colour in his cheeks.

1st Day Post surgery.

Sorry there have been no updates.It is really difficult to get signal in the hospital.We cannot use our phones in the PICU.
Broc had a farely good night.He did have some O2 issues but are hopefully resolved now.He also had some low blood pressure too but that seems to be ok for now too.
He was still really hoarse this morning even after the treatments so we are seeing a Pulmonologist today as well as ENT for that to see if they can give him anything that can make him more comfortable.
He did have some popsicles this morning. His central line came out as well as his cath this morning.

He did start on lasix today as well as another pain meds to make him more comfortable.He has asked for his trucks and bikes to play so he is feeling much better.

We are hopefully going to leave PICU this evening if he can handle being with out precidex.That is the meds that keep him calm.They are also starting him on iron as well as his reflux meds too.

sorry again for the delay.Thanks for all the prayers and thoughts from eveyone.

An update on Brocs surgery.

we just got an update that they have done the repair and the patch over the aortic valve and now they are doing the echo to see if his pressures have come down any.If they have come down to a good level then they will close him up and take him off the bypass machine.

Day of surgery

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 have 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 have discovered that there is 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.

3 More days till surgery.

Broc is getting more and more tired by the day.He has times where he is rearing to go and then other times where he just lays around.The times where he lays around are getting more than the times where he is on the go.If you know Broc he is not the same little boy. He is really getting clingy and over affectionate to the point where it is almost suffocating me.He does not want to leave my site.He wants to be on me 24/7. I feel so badly for him and want to take it all away.

I wish we could postpone this till a later date when he is old enough to understand fully what is happening.But we know that for him to live that is not possible. Over the past few days he has had times where he will have no color in his face and look very pale and then you realize that he needs to have this surgery now more than ever.

I am taking photos and video of them together and trying to remember little moments that him and his brother have together.

My mom is here and has been so wonderful with helping us getting the house organized and laundry ready to be packed.Tomorrow will be a day full of packing suitcases and getting things packed for our long journey.

We have bought old man pj's for Broc with the button down shirts so that he will be more comfortable after his surgery.He will not be allowed to lift his arms up for 4 weeks for his chest bone to heal.

Broc is still taking breathing treatments twice a day,iron supplements 3 times a day which he hates the taste of poor guy and then of course the EPO shots.He has his last shot tom morning and then he will have them in the hospital too.It is so sad that we have to put him through all this preparation but we know that it will help him get through his surgery and hopefully have less complications. He is such a brave little boy and we are so proud of him.

Strep No 8 and a cough

Last week Broc and his brother came down with really high fevers.I took them to the dr and they both have strep throat.They were both put on antibiotics and the fevers came down.Broc's took a little longer to come down about 5 days.

Over the weekend they both develope really bad coughs and the ped said that it is normal after and infection like that.We gave them honey and Mark was able to have a decongestant too that seemed too help him get better.I was doing saline treatments for Broc and honey too but he was just getting worse.

We called the ped and he said that he should have an x-ray to make sure that he doesn't have fluid on his lungs.We had the x-ray taken and were told to stay and wait.Never before had they told me that so that sent up red flags for me.The dr called them back and said that he has RAD Reactive Airway Disease which is a form of asthma. He is on breathing treatments now until his surgery in 2 weeks. There are so many things happening to our poor little guy.It is such a fight as he does not like the treatments at all.

We are hoping that he gets better soon so that he can have the surgery and hopefully stay healthy for a while.

Eating only a little

Since Brocs last cath his eating has really gone down and actually before that too now that we think of it.We have discovered that his heart is not pumping enough blood to his stomach to digest his food so his whole digestive system has slowed down and can only do as much as it can with the amount of blood it is given.

So instead of eating like a horse like he used to he eats only half or less the amount of food that he normally eats.He has to eat all day but very small amounts.His drs are worried about his calorie intake and not so much the nutrient part.

He ate shrimp last night until he fell asleep. Broc gets to eat anything that gives him lots of calories.Ice-cream,milk shakes things like that.

The worst phone call anyone can have.......

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.

Broc is getting tired.....

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.

A little scare

About an hour after we got home Broc spiked a fever of 103F. We called the drs and they said to bring him into the ER.They were not sure if it was an infection or a reaction to his flu shot that he got. Anyway he was admitted to the hospital and put on IV fluids and antibiotics.He stayed in the hospital until Thursday night and then we came home.

He is doing much better now.Still running a low fever but that is to be expected.His tummy is also really upset due to the antibiotics.His tummy does not like antibiotics.

Broc will be going back to see the card in 3 months time for a follow up visit.

Thank you for all the kinds words of support and prayers that were offered in our behalf.

Day of surgery

Broc was really good this morning.He did really well with letting all the drs and nurses listen and prod him.

He was almost alseep 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.
Till tom.good night.

The Day before

All the bags are packed and we are ready to go. Mom and dad are a bundle of nerves.Broc has a really good idea of what is going to happen.He knows he is going to sleep and then the dr with a mask will make a tiny, tiny hole in his groin and then they will fix his heart.I think the more he talks about it the more comfortable he gets.He is telling us not to worry and he says that he will see us when he wakes up.He is only 3 and he is being so mature about it all. We are so proud of him.He is such a brave little boy.

We have to be at the hospital at 6.50am to check in and his surgery will be around 8am.They say it will be between 2-4 hours for the heart and then another 30min for the Upper GI scope.

I will keep everyone up to date as much as we can.Love you all and thank you for your support.

2 Days to Go.......

Broc had another great night.He is asking a lot of questions today. Grandma and Grandpa came over last night with remote controlled cars for the boys.Thank you mom and dad.That was really kind of you.They were so excited.Mark said he is taking his with him to the hospital. Mark said this morning that it was so thoughtful of grandma and grandpa to give us these cars.

We are busy with laundry and then will start to pack the bags. As parents we are still trying to wrap our heads around this.He looks perfectly healthy on the outside but we know that inside he is really sick. We are really scared and nervous for him People really don't understand what we are going through and its really difficult to explain at the same time. We appreciate all the support you have all given us.It really helps to know that we are not going through this alone.We know to that Jehovah is helping us too and giving us the strength to get through each day.

Good night.

Broc had a great night last night.Maybe his reflux meds are helping him after all.

Only 2 days to go.........

Call from the dr today...

We got the call from the GI Dr today to say that Broc is having his Upper GI procedure done on the same day as his cardiac cath.The cardiac dr said that if all goes well then he can have the scope done after the cath.

He is not sleeping well at night lately.We are not sure if he is having pain or his reflux is causing him some problems.But it makes for a very tired mommy and daddy.

We want to thank everyone for all there support and prayers they have given us.It really is a very difficult time for us.We want it to be over so he can carry on being the little bulldozer he is.

It has been very difficult trying to keep him from wrestling with his brother or running outside.

Only 6 more days to go........

Trip to the G.I. Dr

Broc's reflux is getting so bad that something needs to be done.So we called the G.I. Dr asked him what we should do.We explained that he was having a heart procedure done in a week or so and that he needed something to help him feel better.

Broc and I took the long 3.5 hour trip to Riley Hospital to see dr. He listened to all of Broc's history and said that he should have outgrown reflux by now if he was, but some kids never outgrow it. He has increased his meds and given him another one too.He also suggested a barium study and a upper GI scope. He said that he would speak to the cardiac surgeon and see if they can do the scope while he is under for the cath. I was really happy with that as the less amount of times that he has to go under the better.

We did the scope the following week and he was such a champ.I was so proud of him.He had not eaten since the night before.10am came and went and he was getting really cranky.We went in shortly after that.

They radiologist said to him that he had a milk shake for him to drink.I think Broc was so happy that someone was giving him a drink that he accepted.He drank everytime they told him to.I was so proud of him.

After the test the radiologist said that all his anotomy inside looked really good and that he could not see anything wrong.

Off to buy McDonalds chicken nuggets his favorite.

Call from cardiac surgeon

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.We love you Broc.

Broc's Heart check-up - Sep 2010

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.

Several Strep Throat infections and pneumonia.

Since the beginning of July Broc has had several strep infections.He has had a total of 6 antibiotics in about 2 months.We went to see the ENT at Riley and he suggested that we have his tonsils out as he has many of the criteria for that.

Of course we have to make sure that his heart is doing okay first.We are planning to have his tonsil and adenoids surgery in December to give his heart time to heal.


Broc also suffers from pneumonia quite a bit.The drs are not sure if his reflux is the cause or he some other underlying issue. He has had pneumonia 8 times since he was little and twice this year.