Lily's new heart troubles

Alright, so this is not the update I thought I would be putting out right now. Lily is doing ok for now, but we have to watch her heart closer then we were. No red flags as of right now, just yellow for caution. As I have mentioned before Lily has been breathing rapidly and turning dusky from time to time and now we know the reason behind it. Do forgive me if this seems a little hard to follow trying to process all the medical information and turn it into information that everyone can understand.

Lily's last surgery to fix her LVOTO and AS went well, her LVOTO is doing well for the time being but it is her AS that we are watching closely. For those who dont know what AS means it means Aortic Stenosis. This is where there is a narrowing in the arota at the bottom of it. Anywho, the last procedure to repair her AS went fine but when repairing it they had to cut part of her aortic valve at the bottom and then reatach it...hope you all are following me here... (I will include a picture of the docs drawing...humorus to see to say the least). When you reatach a valve you are atomatically cause scar tissue, or what they like to call greating(not sure if that is how you spell that) ...and scar tissue causes narrowing...which is bad...so...she has narrowing in a different spot now...I am hoping we can heart cath it but if I am thinking correctly that wont be an option. Its extra tissue not the walls them self narrowing...once again I hope that makes sense.

Ok the next problem here. I have been noticing Lily breathing rapidly and the blusish color from time to time. Well that would be a Mitral Valve that would be causing that probelm. In the left ventricle, the inlet valve is the mitral valve, which opens from the left atrium, and the outlet valve is the aortic valve, which opens into the aorta. Each valve consists of flaps (cusps or leaflets) that open and close like one-way swinging doors. Her valve is opening and closing to quickly which is not allowing the blood to build up in the Upper Left Chamber before it drops into the left atrium...hope your still following me here...the Upper left chamber is where the blood is disperesed for the lungs, so if it doesn't fill properly the blood cant go where it needs to go before it drops into the next chamber. So...how do you fix this you may ask? well that is where a Beta Blocker comes in....whats that you ask again...well from what I have read and what I have been told it helps with the arrhythmias, heart failure and a few other things....but shes on an arrhythmia a medicen already....boggling my mind over here...I guess her Amiodarone isnt doing what it needs to do...but then again it must be because she hasnt had a SVT (Supraventricular Tachycardia )supraventricular (atrial) tachycardia is a regular, fast (160 to 220 beats per minute) heart rate that begins and ends suddenly and originates in heart tissue other than that in the ventricles. Here is a link to explain it better then I can http://www.sjm.com/conditions/condition.aspx?name=Supraventricular+Tachycardia+(SVT).

Back to the beta blocker...this will help to slow her rythem down and help her blood thin a bit to allow for it to flow quicker into the chamber to give it the chance to fill before the valve opens into the next chamber....

Ok...my head is hurting now...lol...wouldn't yours after all that information? As of right now, Lily is fine, just on a watchful eye. The Cardiologist listened to me this time...YAY...hopefully they will continue to...last time they didnt and then Lily got critical....I wont let that happen again. Thank you for all your prayers! I will update after her next apt on the 25th or sooner if need be!

Her new infection

The Infected Wrist

What I'm getting out of it!

Oh boy....thats all I can think right now. I want to yell...I want to scream...but we all know that won't do me any good at the moment. Lily once again has another infection, this time, it's in her wrist...funny place to have it right? Well here's the story...the oh so wonderful story.

While Lily was in the hospital this last time they tried to start an Art line (IV) in her wrist. Well it didnt take so they had to suture the site closed and then they tried again in her groin and got it there. So now back to the wrist, all was while at the hospital, the sutures stayed in place and no problem with it. Well now since we have been home, I have noticed a little suture hanging out of it., I haven't touched it unless while washing it, I figured it would fall out on its own and seeing hasn't given us any problems since now I haven't mentioned it to the doctors. Well about 3 days ago I noticed it started to get a red color, it wasn't puffy or anything, just red. So I watched it, then yesterday I noticed it was little puffy. She cried almost all day, and if she wasn't crying she was asleep...in my arms, no where else. She squirmed all night last night, would wimper in her sleep, so when I go up this morning I called the Ped Cardi to let them know what was going on, they told me to call her regular Pedi. I did, and they told me to bring her in once again ASAP. We got there and her Pedi was so upset that she was back once again...not that she doesn't like seeing Lily, she just doesn't want us there unless we have to be. We have to wait in the back so as we were sitting there she comes up and takes a look at her and goes."SHIT" I almost fell off my chair...I wanted to clean out my ears to make sure I heard her right. She ran and grabed the doctor we were seeing and said, get her in pronto and culture that. Well no more then 5 mins later were we in a room, being weighed and measured, then the doctor comes in. He listend to her because of her fast breathing and blue lips. Got the o2 monitor and she was in the 90's like always and then listened to her heart, no different then 2 weeks ago. So we are good there, but then he looks down at her writst and looks at me and said, "Hold her tight while I squeez this" Squeeze he did, scream she did, cry I did, and puss it did.

Ugh It was awful, green puss everywhere and then blood, He swabbed it for a culture and stuck his head out the door and hand it sent to the lab stat and said it will be back friday. For now we are on Keflex twice a day. He said once the labs come back they will change her med accordingly.

I am so frusterated. Its like please...tell me how does this happen? I wash my hands anytime I pick her up, so does anyone else. The boys know not to touch her without seeing mommy or daddy first for hand sanitizer so I don't get how she got this. The only way we speculate it happening is it all started with that cheek infection. and it spread, but if that is the case then wouldnt that be a blood infecton? And if that is the case we would be in serious trouble, it would explain the crankieness....I am so stressed right now. If it is a blood infection then that would mean a trip to the hospital and that I can't do again. Praying is my only option. I ask that you all would continue to pray with me.

(Lily sleeping...not in mommies arms for once today!)

WOAH.....Way to many emotions!

As I sit here and reflect on the last two days my emotions have been all over the place. I have gone from severe anger to crying like a baby. Lily is ok...a little shaky and has me on edge but ok. She has turned a dusky color a few times since being home but her lips have turned blue quite a few times since being home and as I watch her breath she seems to be breathing a little faster then normal. I actually had a friend of mine listen to her, her lungs are clear and her heart sounds as fine as it usually does, it is hanging in the 150-160 bpm, but I dont know...something doesnt feel right when I look at her. She has been so cranky lately, her wrist where they tried to get her art line put in and failed was sewn back closed and a suture is still in there and now it is red and puffy, no puss but a little warm. The last place I want to take her is the ER with all the germs unless I absoulutly have to. UGH.......no rest for the weary!

So I had an extreeme case of dejavu the other day. A friend of ours little girl is back in the hospital after a very scary case of heart failure. Baby Bela is her name, her and Lily were born on the same day, just hours apart from eachother! She was born with HLHS and had the Hybrid done and did great. But the other day she took a turn for the worse....her o2 sats were beyond low and she was grey and blue...never something you want to see your child look like. They rushed her to St.Joes and her sats came back up but then dropped again, they admitted her and then the next thing you know she was intahbated and then coded twice.

It all rushes back to me, the sounds of the moniters, the dinging of her vent, nurses and doctors running around, yelling orders to eachother...as you stand there helpless...your arms ache because hours ago you had your precious child in your arms, with those little eyes looking at you and now you look at your child and they are listless and pale. Such shock overcomes you, you begin to ask yourself how did this happen? Just the other day she was doing fine, was there something I could have done to prevent this? You just want to take all this away from them, place it upon your own heart...so their can be healed. Being the mother or a CHD baby demands so much from you and I am not talking physically, but mentaly and emotionaly. You dont know what tomorrow will bring, if you baby will be in your arms or in the arms of the lord instead. You have so much put on your plate for taking care of them, and you would change nothing about it. You will walk hours at night to calm them and not let them cry because you know it is not good for their heart to cry, even if that means you get no more then a hour of sleep before you older children wake up. You will forgo ever luxery in life just to keep this precious child here with you. You can never explain to another parent what it is like to lead the life that a CHD parent leads. The worries that come with it, the heartache that comes with it......the unknowing that comes with it. You give it to God and try to remind yourself daily that it is in his hands and always has been .

Matthew 6:34.
"So do not worry about tomorrow ; for tomorrow will care for itself. Each day has enough trouble of its own.

Just another day in the McLaughlin Household!

!Meet our Household!

(Lucas)

(Austin)

Mama and Lily with the funny face...mama chopped her hair

! Belly time for the first time since her second OHS!

(Mommys New Hair)

as i sit here and type this i have a sleeping baby on my chest and two children sitting in front of the TV watching Dora, quite for the first time today....I think I am losing hair from stress, everytime I brush my hair I have to clean it out afterwards from mass amounts of hair that wasn't there before hand....normal children are stressful enough...but add an autistic child, an asmahtic child and a heart child all together...what do you get? No sleep, tons of worries, stress and no quite! I can't remember the last time my head didn't hurt at all. I can't remember the last time I have eatten, breakfast, lunch AND dinner...most days it is a snack and dinner with lots to drink inbetween to keep myself from passing out. When you have next to no help it gets hard.

We have friends coming in town in about 2 weeks, my house is a mess....and you all are probably thinking...2 weeks..she should be able to get the house together in 2 weeks....yes...I should be able to...but that is before we add mishaps in between...such as a 2 year old drawing on the wall, carpet, his brother and himself....or that is before a 4 year old sticks his hand in the back of the toliet and then the next thing you hear is Uhh Ohh....that is before you realize that you have to have at least 3+ hours of sleep in order to function but even then you can barely keep your eyes open long enough to tell it is day or night outside. It takes all your energy just to tear a 2 and 4 year old off of eachother n the heat of another fight over who had the red lego first (while you try to explain that here is another red lego on the floor...the same one...but its not the one that the other has so lets not go there) You scream in frustration while the kids laugh at you. A shower is a luxery, just like eatting.

My husband wants to know why I can get nothing done around the house...he assumes I sit here all day...well right now I am...but I dont. Try doing laundry one handed with a baby in the other arm....or try loading the dishwasher while everyother object you load gets pulled out. Try to vacum when the next thing you see is popcorn all over the floor or cereal for that matter....you wonder why you even bother to exeret the energy to do these thing when the house just ends up a mess again......you thinki...I could have made myself something to eat instead of wasting my energy on cleaning seeing it didnt matter anyways because you have no proof of it 5 mins later....some days tears are your cheeks best friends and when others ask you whats wrong, you smile like a crazy lunatic and say...Nothing at all...with a crazy twisted...I am on the verge of losing it.....smile. And if you dont understand that smile...well I guess your kids have never driven you as insane as mine have. My husband tells me to spank them....Well I tell him spanking doesn't solve everything....I spank when I know I have to in cases of touching the stove while it is on...or grabbing a knife from the kitchen drawer.....or when the other trys to do bodily damage to the other....AHHHHHHHHHHHHHHHHHHHHHHH.....I hate having to say the same thing over and over like I never said it before...and when you say it for the 15th time with a little edge behind your voice, they look at you and go...Mommy why are you so mad....BLAH...I know I know...such is the life of a mother....and I know many would give anything to have the trials placed before them that I have....I try to say thank you to the Lord for my blessings, and count them and remember not all are so blessed...but it is hard when you turn around and a carton of eggs are all over the floor and a 2 year old is standing over them going UH OH...I clean up....I clean up...and grabs your clean kitchen towle and makes even more of a mess, slips in it, has it all over his diaper...and then runs before you can catch him on the carpet....needless to say, you have the kitchen, the carpet and the kid to clean.....you think to yourself...does this ever end? Some days I think it never will end...I look up at the heavens(or should I say celieing) and ask God if he is going to show me a sign of mercy today...when I hear nothing in return I swallow the reality pill and put on a couragous smile and continue forward watching the clock counting down the hours until bed time prayers. I just want to hear myself think from time to time.....Speaking of hear myself.....I no longer do...the boys are now fighting over who is going to turn the tv off because Dora is over....oh wonderful...they just started the who can smack eachother harder game...so this is where my blog ends....Lord be with us in the McLaughlin household!