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.