Getting to the heart of the matter

Cardio thoracic surgeon's appointment yesterday. Wait 1 1/2 hours (2 if you count waiting to see the surgery scheduler)

Mason's surgeon will be Dr L. Bailey. World renown and highly recommended. He seemed very approachable and had a calming manner about him (is it ageism that the fact that he's two years younger than my mother makes me pause a bit?).



Most of the echo results are normal. The repair of the interrupted aorta and the closure of the VSD were successful. The patch they place to close the VSD has not bulged. Instead it seems that part of the septum is malaligned. This is not a failure of the previous surgery rather another issue with Mason's anatomy.

The exact findings on the echo are:

Severe infundibular/conoseptal malalignment, with subaortic obstruction. Mild left ventricular hypertropy.

What the heck does that mean?

Well in short the infundibular/conoseptal part (the red arrow) is bulging out and causing the subaortic obstruction ,or narrowing of the aorta, (the yellow arrow). With the aorta being so narrow it's causing the blood to back up and the pressure from this back up is causing the left ventricle to enlarge (green arrow).

Left untreated this will eventually cause the heart to fail but with surgery they plan on dissecting the aorta and removing the extra tissue that is bulging out.


Dr Bailey tells us this is a very successful surgery and he sees no reason for it to fail or cause any major complications. He is afraid however, with Masons Laryngomalacia(redundant tissue around his vocal cords) and respiratory difficulties because of this might cause another extended hospital stay. He also already brought up the possibility of Mason needing a trach.


The kicker......

we face the very real possibility of this re-occurring and Mason needing the same surgery again in the future. We will just have to have an echo done every 6 months and hope that it doesn't.

I know. Talk about gut check. I felt like I was going to throw up right there on that world famous heart Dr.

So surgery day is set for August 26th. We have a month to prepare for the unprepareable

Our heart is on the line again. There is nothing more I can say.

There is nothing more to say I guess.




Mason's first haircut. Sorry for the lousy pictures but I was by myself so I was shooting with the point and shoot camera one handed!

This boy's hair grows fast. It was over his ears and getting down to his eyes! See how well he is sitting? He's getting better and better everyday (even if it's only for short amounts of time)



Yeah so it was going really well terrible. So I had to improvise.

and I did the rest of the haircut with Mason in the bouncy seat (yes do I rule!)

and Ta Da! Not too bad if I do say so myself.

Surgeon appointment update

So after two hours of phone calls yesterday I was able to get us an appointment with the cardio thoracic surgeon on Monday the 25th. The conversation went something like this...

Me: I need to make an appointment for my son to see the surgeon..
Person: The next available apt we have is for August blah blah blah
Me: We the cardiologist feels Mason needed to see the Dr asap because of his echo results
Person: ((sigh)) OK let me put you on hold and go look at the echo results
Me: wait......
Person: Oh OK well we need to get you in sooner than that. Hold on and let me get you the supervisor.
Me: wait...
Supervisor: Well the next available apt we have August blah blah blah
Me: no see echo
Supervisor: hold on while I look at echo
Me: wait....
supervisor: OK we are going to need to get you a sooner appointment hold on while I get the nurse
Me: wait....
Nurse: blah blah August
Me: echo
Nurse: hold on
Me: wait....
Nurse: OK I need to talk to the Dr
Me: wait....

So finally after going through 4 people I was able to get them to make a time for us Monday morning. In fact they just created an appointment for us. I'm so thankful that they are bending over backwards to get Mason seen but my stomach is in knots knowing that Mason's echo results were bad enough for us to get this kind of attention.

The good news is that's George's day off so he is going to be able to be at the appointment without using up any of his vacation days which we need to save up for surgery.

So Monday we will have a better idea of what is wrong and when surgery will be. Till then we wait and try not to go crazy.

Since post with pictures are so much more interesting...

Mason "enjoying" a little sun out in our backyard

and Pierce, because he's just so dang cute and an amazing big brother

and in other interesting news this morning Mason was just crying and crying and seemed to be in pain. Usually when that happens it's because he's having gas pains but no matter what I did to help him he just kept crying. Finally as I went to check his diaper (for the 3rd time) I noticed his Mic-key button was hanging half out of his stomach.

Holy shiitake mushrooms!

Now if your not the parent of a G-tube feed baby then let me explain to you that the G-tube(feeding tube...see black arrow in picture above) is held in by a small balloon filled with saline. At anytime this balloon can get a leak, deflate, or worst of all just be pulled out. They warn you when you get the G-tube that this is not a someday might happen thing. It's a someday it WILL happen thing (as I'm sure all my tubie families are all too aware) and when it does you have about an hour to get to the hospital before the stoma closes up and you have a BIG problem!

So they supply you with a spare so WHEN (not if) the tube comes out you can bring it with you when you go to the nearest ER or GI Dr to get it re-inserted.

Now I watched them when they changed Mason's tube last month (which took 7 minuets and cost us $150.00 but cost the insurance company a ton more than that) and I realized it's not a big deal. Not that unlike putting in a Foley (urinary catheter) which I have done 100's of times as a nurse .


So I took a deep breath, deflated the balloon, pulled the old one out. Checked the new one to make sure it worked and popped it right in. Took me a total of 3 minuets tops and it saved us a trip to the Dr's and at least a $150 bucks!

Mason was unfazed he just sighed and rolled over an went to sleep.

but I was pretty impressed with myself.

I am such a badass!

and since I'm usally the one behind the camera here's a picture of the boys and I on Mother's Day.

Yesterday...

Yesterday all my troubles seemed so far away.
Now it looks as though there here to stay...
There a shadow hanging over me
yesterday came suddenly.

Thursday as I was updating the blog and writing the part about having to make medical calls everyday I remembered I needed to call the cardiologist and follow up on the echo we had done to get clearance for Mason to get his cleft palette surgery done.

Well it turns the echo showed that the patch they placed to close the large hole between the bottom two chambers of his heart is bulging and causing the blood to back up. This in turn is causing increasing pressures which will cause his heart to enlarge and eventually to fail.

He is going to need open heart surgery again sometime in the next few weeks.

His heart.

The heart that was 99% fixed is now failing and we are back where we were 6 months ago facing another critical surgery and back to that great big scary place where you don't know if your child will live.

I feel like I took a step out of the door and got run over by a Mac truck.

I feel betrayed, though there is no one to blame.

Just when we started to feel like we could exhale and feel safe we are right back to January 6th and our beautiful baby boy who today looks like this..

Will look like this again..

I cannot bear the thought of it. His chest being opened up, his heart stopped, not again.

I'm terrified. I feel like there's a two ton anvil sitting on my chest and I can't take a deep enough breath to fill my lungs.

Someone asked me if there was anything they could do to help.

There is.

Pray, if your beliefs lead you that way.

Send a little hope this way if you have any to spare because I'm feeling a little low at the moment.

and believe for us. Believe that he's going to be just fine.

Because we don't work without him

Yesterday came suddenly indeed.

We are waiting on a referral to see the cardiac surgeon and then we will know better when the surgery will be. I will let everyone know as soon as we do.

Someday this is going to be funny..

Not today mind you but someday.

Someday, years from now, we will all be sitting around the table after dinner has been eaten and telling stories the way my family does and we will laugh at what you put me through today.

Someday.

So your hanging on but just barely. We have put you back on the vent through a nasal cannula which is the last step before you get the tube back in your throat.

The Dr's feel that putting the tube back down your throat will aggravate the swelling and as long as you can hang on we will. We are going to push it as far as we can and hope you can make it till the swelling decreases.

They are giving you steroids and have you on your belly since your airway stays open best this way.

They have put on an external carbon dioxide (CO2) monitor. It's not as accurate as doing an blood test but it will give us an idea, without having to draw blood, if your carbon dioxide levels are climbing.

If your CO2 levels stay low enough we are going to continue to ride it out. I can't leave your side and plan on staying all night. I can't stay here all night and be by your side tomorrow too so I've called in re-enforcements aka Dad.

Your Dad drove like crazy to get here and is not going to go into work tomorrow since you are so sick.

So we are here.

Waiting

Watching

Hoping

Hang in there kiddo.

So team Mason we need you.

Pray, send out your good thoughts, and cross everything you've got because if this doesn't work. We really don't know what will.

Another Step Closer

Today we took care of two procedures at once. This allowed us to intubate you once. First the G-tube. Then the procedure to remove the flap of tissue that was obstructing your airway (Plasty for short).

The MI-KEY "Mickey" will allow us to feed you without having a tube in your nose or mouth. Not perfect but better. This tube ties into your stomach and helps keep your face free of tape, another plus. It is also much easier to clean and for Mom and Dad to use at home, benefits all around.

The plasty is something we have been asking for to help you breath easier. We hope that by removing the obstruction this will reduce your strider and you will be able to take a deep breath with ease. If your O2 and CO2levels are stable and you stop spending so much energy on breathing who knows you might actually start growing.

The day went well, we were supposed to have surgery at 3:45 PM but things changed and you went in at about 9 AM, much better. you returned at about noon and we were both here waiting for you.

You struggled a little with the breathing tube, it was too far in and actually went into the right ventricle. Well one x-ray and lots of tape later we thought we had it. One more x-ray and another adjustment and of coarse more tape and now you are good.

Mama is with you while I type. You are so strong. You do amaze me.

Mama is incredible too, being here by herself. She is getting some help but I do not know if the roles were reversed if I could do it by myself.

So you owe Mama. I would advise a flower and a card on every anniversary of the day you came home. Because with out our Lioness we would still be waiting to see what happens instead of another step closer.

-Dad

After the surgery's your color looks great!

it was not enough to give you a bad hair cut but another tube at least this one is breathing for you.

"M.I.C.K.E.Y. M.O......."

Through the double doors again..

Once again the hated double doors to surgery. Our fourth trip and hopefully our last trip for a long while.

Your surgery was scheduled for 3:45 pm today and they took you at 9:00 am. Even though we had to rush to get here it's great that your going so early so you wont have to go the whole day without eating.

The plan is to do the Supraglottoplasty where they will sedate you then remove some of the extra tissue around your vocal cords then to do the feeding tube surgery. We don't actually know which they will do first but since they usually do clean to dirty in surgery they will most likely do surgery on your throat first then your stomach. We figure it will take a few hours at least.

So again we need team Mason. Send your good thoughts, pray, for a quick and complication free surgery and that this is the solution to your breathing problem that will get us on the road to home.

your favorite nurse Tania

This is your primary nurse Tania. Nurses have to volunteer to be a primary and we were lucky enough to have Tania volunteer to be yours. By the time your old enough to read this you may not remember her so let me tell you that you love her. You always rest easy and have a good day when she's taking care of you.

cousin Whitney thinks you look like a badass with your new haircut

On a side note you got butchered a hair cut yesterday. They shaved the whole right side of your head. I'm less than thrilled about it but you needed an IV and it was the only place they could find one.
I was hoping to do your newborn pictures soon after we got home. I guess we will just have to make sure your "good" side is always toward the camera.

We wait and we hope...

Things have been quite here.

Just waiting for Monday.

Granny came and spent the day with you while I took Pierce to have lunch with Dad.

We are so hopeful that this surgery will be the answer to your breathing problems. We don't know what time your surgery will be yet but should find out tomorrow.

You will be on the breathing machine for a few days so it will be Wednesday or Thursday before we will start to wean you off and see how you are breathing. It will probably be the end of the week at least before we will know if there is any improvement.

So now we wait and we hope.

We will keep you updated on Monday on how it goes.

Pictures from the last few days

You got an ultra sound of your diaphragm. You hated it.

Another tub bath. You hated this too but you sure smelled better.

All clean and cute!

I am Momma...

hear me roar! :)

Long day today.

First meeting was with the surgery Dr's. They don't want your feeding tube on Monday. They want to wait till we have the results from the ear nose and throat (ENT) Dr's scope of your throat.

So here's how it's going to go.

Monday the ENT will make you sleepy and look with a camera at your upper airway in action to see if they can visualize your obstruction. After that they will sedate you completely and look deeper down into the opening of your lungs.

The ENT will be looking for two things. One to see if there are any signs of acid reflux that might be causing the inflammation that is blocking your air way. If the do see any signs of acid reflux than the surgeons will do the Nissen surgery along with your feeding tube surgery.

The other thing the ENT is looking for is to see if there is any changes with the Laryngomalacia (extra floppy skin around the vocal cords) and subglottic stenosis (narrowing of airway) that might warrant doing the Supraglottoplasty and dilation.

So depending on what they find you may have 1 to 4 different surgeries coming up. Holy moley!

*****************************************************

So this afternoon two times you had a tiny bit of spit up. The amount was so small it can only be described as scant. So the nurse we to report it to the resident and came back saying the resident had given the order to stop your feeding for 24 hrs because he was concerned that you might aspirate (inhale into your lungs) the feeding.

I was shocked by the order. Having see the tiny amount of spit up you had, and being very experience with aspiration I felt the order was excessive and unwarranted. I explained to the nurse that I didn't agree with the order and I would like to see the resident before she implemented it.

So an hour and a half later the resident finally came to talk to me about it. He explained to me that he was concerned with you being on the high flow oxygen that you were a risk for aspiration and so he felt your feeding should be held. He felt with your history of acid reflux this increased you chances of aspiration.

I explained to him that you had been on the ventilator through the nasal cannula and had been actually vomiting your tube feeding they had not held your tube feeding then so I didn't understand why he felt it had to be held now. I didn't see any reason for you to go without food for 24 hrs or longer when you were only spitting up scant amounts.

Also that the Dr's have seen no evidence of acid reflux (that's why they don't think you need the Nissen surgery) so that again wasn't a valid reason to hold your feedings.

And since nothing is planned till Monday, and that's just a scope, not an intervention then what he was purposing was to hold your feeding for up to a week and a half.

You have finally started to gain weight (you weigh 6.5 lbs by the way) and without your tube feedings you would start to lose weight again. You would not have the energy to maintain your breathing and would end up back on the breathing machine guaranteed.

Not to mention that going without food would make you absolutely miserable and I wasn't going to let that happen to you without a good reason.

After going back and forth about the order the resident decided to bring in the neonatologist to discuss it with me. The Dr and I discussed the order and my reasons for refusing it and....

the Dr. agreed with me.

So enjoy your dinner baby. Mamma's got your back.

Of course if I see any signs that you are at a risk of aspirating then we will be holding your tube feeding immediately.

I have a feeling you will do just fine.

A few times today you were wide awake for quite a while. We played, sang songs, and snuggled. I love you so much my beautiful baby boy.

Mason's Re-birthday

Surgery is today. 01/10/11

We know we are second on the surgery list but the nurses tell us this really doesn't mean much except Mason will have his surgery sometime today. It could be 7 in the morning or it could be 7 at night. I will update or my friend Tiff will update everyone the second we have an actual time.

So pray. Or send good wishes, good thoughts, JuJu. Throw a penny in a wishing well if you happen to pass one. We would appreciate it more than we can say.

George and I are so grateful for all the love and support you have all given us. We honestly never realized how much just a few words could come to mean so much to us. We feel like we are on this journey with you and it's so much better with company.

George and I are asking everyone to please do not text or call us.

Please understand that we love and appreciate everyone's support more than we can express but for the next few days we need this time to concentrate on caring for Mason. We are asking this of both our family and friends. We will be calling our mother's to update them and Aunt Tiff is on duty to update the blog. Again please understand we are asking this only because we need this to allow us to concentrate Mason and his recovery and for no other reason.
While we are at the bed side we cannot have our phones on so we can't see text messages or answer phone calls anyway

We need to have our phones on 24/7 so the Dr's can contact us anytime in case Mason is in crisis and the phone calls and text messages are draining our batteries.

Sleep, for the next two days, will be almost non-existent for George and I we both will be catching catnaps whenever and if we can. Since we can't turn off our phones we might be woken up and getting even less sleep than we otherwise would have.

We would love love love it if you would leave a message here on the blog for Mason. Or if you would rather send an email. When I put together Mason's memory book I am going to be including all the messages of love and support. I want him to really know how so many people were there for him and for us.

I am at Mason's bedside now and don't plan on leaving till he goes to surgery so I will have hours to update the blog. I have so many details to share about our boy and the last few days.

Again, you are all such a blessing to us. I honestly don't know how we got so lucky to have so much love and support sent our way. Thank you