Not Again

I cannot believe this is happening to us, to David. It will be four months since his surgery on Thursday and we are already headed for another one. Yesterday he went for a routine echo to check the work that had been done during surgery. That looked GREAT! But now there is another problem, one that was not there four months ago when they did his exit echo. This almost sent us to Mott via ambulance yesterday.


Dr. T has been working with Dr. Goble for the last year and she wanted him to do David’s echo before he left. He’s the one that gave us the bad new seven months ago that David needed another surgery, though we knew that one was coming. He was again the one to give us the bad news though this one was NOT expected at all. Just below the aortic valve there is a hold, causing an area to balloon out. Dr. T’s words were “That’s NOT supposed to be there”. It was not there four months ago and it’s already at a sage 5. Not totally sure what that means just that it’s not good.

Dr. T was so worried about the findings that he sent the echo down to Ann Arbor and had one of Dr. Bove’s head cardiologist look at it there. He agreed with Dr. T’s findings, but because David is healthy and not showing any symptoms that there was no need to send us down right now. They would have Dr. Bove look at it when he got out of surgery.

The call from Dr. T came in last night about 6:20pm. Dr. Bove agreed with the echo results and his secretary would be calling me with a date. This surgery will be within the next 2-3 weeks. I am not ready for this, this was not in our plans for this summer. This is not supposed to be happening. Why must we go through this again, why must David suffer through this again? It’s not fair.

I know there are kids out there worse off than David, kids needing heart transplants, on oxygen 24/7. Kids die from heart defects every day. We are lucky to have David, as healthy and happy as he is. Not everyone is so lucky. But I wish my boy could be normal. Normal like this brother. I wish he didn’t have all these difficulties and challenges to face.

I know that this too will just be a minor bump in the road once it’s done. But my anxiety has hold of me pretty good right now and I am stressing.

What's Going On...

I guess it’s about time I update. It’s been a month. Last time I posted David has lost his two bottom teeth. He has since been to the dentist for a cleaning, they did and x-ray. She said she doesn’t think they were quite ready to come out yet so he must have hit his mouth but they were almost ready to come out. The adult teeth are through the bone and just under the gum line. Since the appointment one has started to come through his gums.

We’ve confirmed that David will be repeating kindergarten. He’s just not ready for first grade yet. Basically, I know I’ve said this before but, the pre-school he was in last year SUCKED and didn’t teach him anything he needed to know to go to Kindergarten. We knew he wasn’t ready for kindergarten but I was NOT going to leave him in that pre-school another year. He basically learned in Kindergarten what he should have learned last year in pre-school. I feel bad for David. I am however, very happy to report that Matthew will be heading to first grade! He is totally ready, above some of his peers in most areas. Even though he is basically the youngest kid in his class (he won’t’ be six until August, most kids have already turned six) we are still going to let him go on. Next year he will be in an all boy’s class, we will see how he does next year. If we feel at the end of 1st grade he needs some more time to socially grow up, we’ll hold him back then. I really don’t like the idea of holding kids back after 1st grade.

We’ve also started David on some ADD medication. Adderoll, to be exact. The lowest dose is 5mg. She really didn’t want to start him on meds because school is almost over, we know he’s going to repeat kindergarten, and he’s really still to ‘young’ and too small for the meds. We decided to start the meds giving him a half dose, (we take the tablet and sprinkle half the stuff inside), and if after a week we (and the teacher) doesn’t see any improvement then we will give the full 5mg dosage. We go back to the doctor in a month to see how it worked. We may not give it to him full time during the summer and just feet the hell out of the kid so he’ll put on some weight (the kid does eat like a pig, have no idea where he’s putting it), then get back on the meds full time when school starts in August. So basically we are test driving this meds. We are limited on what we can give him because he can’t swallow pills, and this one we can split and dump the stuff out, and put it on applesauce or something. So we’ll see, today is his first day at school with the drug in his system, we gave it to him Saturday and Sunday. I noticed he was calmer Saturday, but Grandma Anne didn’t notice much difference in him when he was with her yesterday.

We took Paul’s boat out for the first time in the 2012 fishing season. Ran good, it seems to run a little faster too. I fished for oh, maybe 10min before I was bored. We left the boys with his parents, and it was nice and quiet, so I read. Paul did catch a 22in pike. He was so excited. Then we saw an Eagle! The fish made Paul’s day, the Eagle made my day. Now we are just waiting for the camping season to start.

Never a Dull Moment

Exciting news in the Shoemaker house hold yesterday.

David lost two teeth! Though I’m not sure how good of news we should really make this.

The boys got up for school yesterday morning. Ate their banana and peanut butter, got dressed and I put David’s shoes on him, why I was doing that he ate his cereal bar. Why I put Matthew’s shoes on him (it’s faster if I just do it myself, the boys take after their Dad… they are SLOW). Well David went to sit in the blue chair. He says “Mommy my teeth hurt, one is wiggly”. So when I was done with Matthew I got up off the floor and David showed me…

Bottom front two teeth… one was GONE (we are guessing he swallowed it) the other was just hanging there. Well I freaked out just a little because for one we were running late. When I brushed the boys teeth the night before the teeth were fine, he didn’t complain about them being wiggly or anything, as far as I know when he got up they were there. How many times to you check your kids teeth as soon as they wake up? I thought… OMG now we have to make an emergency trip to the dentist.

I called Paul at work, he told me to call in sick and take care of it. Well I calmed down by this time, realized… I’m not calling in sick over a lost baby tooth and waste a sick day… we are going to be late… oh well… I pulled the dangly tooth off and looked at his mouth. Called the dentist… they don’t open until nine. David wants to go to school so that’s what he’s going to do. They are baby teeth anyways. I made a quick call to his teacher to let her know so she wouldn’t see him and wonder what the hell happened to him.

When I called the dentist after they opened she gave me the option of bringing him in or just assumes they were loose and needed to come out. I decided to assume they were loose. Like she said… they are baby teeth no harm done. I made a appointment for a cleaning for the boys in two weeks, they can look at them then.

So after I got home from work, and we talked about it with Paul, what we get out of the boys is that David maybe hit is face on the wall. I don’t remember anything from the night before. David never cried, said his mouth hurt or anything to clue us in as to why all of a sudden two just fell out. We tried to get out of David if the other tooth fell out or he swallowed it but then I vaguely remember when he was eating his banana I heard a crunch sound and thought that was odd but didn’t think much of it because Matthew was talking about something else and David never said “oh my tooth fell out”. So we are just going to take it as he swallowed it, and we are not going to dig it out of his poop.

As for what the hell happened to make it fall out… I give up on that one. We will probably never know and David will just have to be toothless for a while.

All I can say is “There is NEVER a dull moment in my house” and that’s the truth.

David's Heart Defects w/ Pictures

This is a normal heart

Congenital heart defects in children

1 in 100 babies are born with a heart defect.

Definition

By Mayo Clinic staff

If your child has been diagnosed with a congenital heart defect, it means he or she was born with a problem in the heart's structure. The news that your child has a congenital heart defect probably made you anxious and worried about your child's immediate and long-term health. But, knowing about your child's congenital heart defect can help you understand his or her condition and what you can expect in the coming months and years.

Some congenital heart defects are simple and don't need treatment. For example, a small hole between heart chambers that closes on its own. Other congenital heart defects in children are more complex and may require several surgeries performed over a period of several years.

Coarctation of the aorta

This is the main one that David still fights.

Definition

By Mayo Clinic staff

Coarctation (ko-ahrk-TAY-shun) of the aorta — or aortic coarctation — is a narrowing of the aorta, the large blood vessel that branches off your heart and delivers oxygen-rich blood to your body. When this occurs, your heart must pump harder to force blood through the narrow part of your aorta.

Coarctation of the aorta is generally present at birth (congenital). Coarctation of the aorta may range from mild to severe, and may not be detected until adulthood, depending on how narrowed the aorta is.

Coarctation of the aorta often occurs along with other heart defects. While treatment for coarctation of the aorta is usually successful, it's a condition that requires careful follow-up through infancy and throughout adulthood.

Atrial septal defect (ASD)

This was fixed at his first surgery

Definition

By Mayo Clinic staff

An atrial septal defect (ASD) is a hole in the wall between the two upper chambers of your heart. The condition is present from birth (congenital). Smaller atrial septal defects may close on their own during infancy or early childhood.

Large and long-standing atrial septal defects can damage your heart and lungs. An adult who has had an undetected atrial septal defect for decades may have a shortened life span from heart failure or high blood pressure in the lungs. Surgery is often necessary to repair atrial septal defects to prevent complications.

Ventricular septal defect (VSD)

This was fixed at his first surgery

Definition

By Mayo Clinic staff

A ventricular septal defect (VSD), also called a hole in the heart, is a common heart defect that's present at birth (congenital). The defect involves an opening (hole) in the heart forming between the heart's lower chambers, allowing oxygen-rich and oxygen-poor blood to mix.

A baby with a small ventricular septal defect may have no problems. A baby with a larger ventricular septal defect or associated heart defects may have a telltale bluish tint to the skin (cyanosis) — due to oxygen-poor blood — often most visible in the lips and fingernails. Ventricular septal defects are sometimes not diagnosed until adulthood.

Fortunately, ventricular septal defect is treatable. Many small ventricular septal defects often close on their own or don't cause problems. Larger ventricular septal defects need surgical repair early in life to prevent complications. Some smaller ventricular septal defects are closed to prevent complications related to their location, such as damage to heart valves. Many people with small ventricular septal defects have normal, productive lives with few related problems.

Aortic valve stenosis

He still has an issue with this one

Definition
By Mayo Clinic staff

Aortic valve stenosis — or aortic stenosis — occurs when the heart's aortic valve narrows. This narrowing prevents the valve from opening fully, which obstructs blood flow from your heart into your aorta and onward to the rest of your body.

When the aortic valve is obstructed, your heart needs to work harder to pump blood to your body. Eventually, this extra work limits the amount of blood it can pump and may weaken your heart muscle, leading to symptoms, such as fatigue and dizziness.

If you have severe aortic valve stenosis, you'll usually need surgery to replace the valve. Left untreated, aortic valve stenosis can lead to serious heart problems.

Mitral valve stenosis

David still has an issue with this but there is no picture.  Look at the Aortic Stenosis picture and the valve just to the left in the blue area.  That's where it is and it would look like the valve in the aortic stenosis picture.

Definition

By Mayo Clinic staff

Mitral valve stenosis — or mitral stenosis — is a condition in which the heart's mitral valve is narrowed (stenotic). This abnormal valve doesn't open properly, blocking blood flow coming into your left ventricle, the main pumping chamber of your heart. Mitral valve stenosis can make you tired and short of breath, among other problems.

The main cause of mitral valve stenosis is an infection called rheumatic fever, which is related to strep infections. Rheumatic fever — now rare in the United States, but still common in developing countries — can scar the mitral valve. Left untreated, mitral valve stenosis can lead to serious heart complications.

Follow Up Appt.

I cannot begin to explain to you the feeling of relief that comes over you when your five year old son’s cardiologist tells you he can resume normal activities and that he doesn’t have to take his Lasix anymore.


For most CHD children that’s something that is not normal. Most parents don’t get to hear that.

But….

WE DID!!!

It’s like a weight has been lifted off my chest and I can breathe.