Monday, March 8, 2010

M.I.A

I have been trying to post my thoughts,feelings and recent happenings about Maccoy's surgery but every time I begin I start to cry and then my mind begins to go down paths I don't want to think about..... Maccoy is scheduled for his open heart surgery on April 14th, his pre op appt. is April 13th and our consult with Dr.OBrein the surgeon is on March 26th.. Every time I repeat this information out loud my stomach does flip/flops and I feel like I could vomit..(here come the tears but I am going to push through).. I have had many breakdowns over the last 8months, mostly its just the ANGER that I feel towards the whole situation, I cry,sometimes I scream, I ask why my baby, what did I do... Oh My God the ANGER there is so much of it I could just hit the wall over and over again and scream throw a tantrum like a 2 year old.. Then there is the part of me that is so scared of that day and the following days of the unknown so scared like I have had a nightmare x 20. I look at this beautiful chubby happy baby and think there has to be a mistake? How can there be something wrong with his heart? He looks perfect and he acts perfect.. Are you sure they are hearing things right reading those echo's right? He is fine, he is fine.. To anyone that would see him he is fine, but to us he is sick.. The last few weeks his O2 Sats have started dropping before he ran like a normal kid 97-100%, within the last few weeks they have dropped to 93-95% which is still safe, we have noticed some blueness around his mouth,his hands and feet and he just seems to be very pale, he doesn't have the strength that Cayne has and seems to tire more easily. So I called Pam our nurse practitioner in Cardio and told her and she said "Melissa we know he needs to be repaired your going to see his 02 dropping and the blueness it's time we get him fixed lets move up surgery", but since Maccoy just got off antibiotics a few weeks ago he can't have surgery for at least 4 weeks so that put us to April 5th and while it was a week earlier we already have childcare planed for the other kids and Clint has work taken off ( a lot of planing goes into being away for 2 weeks when you have 6 other kids to worry about)so as long as it is safe for Maccoy we are continuing with the April 14th date... I wake up every morning dreading, and wondering how will I ever hand my baby over to that nurse for her to take him from me and to go have his beautiful perfect soft/smooth baby chest cut open and work on his tiny little heart??? How??? How does a mother or father do that and be strong for their child? I melted down when Maxton had his hernia repair, or Cater his tonsils taken out and Mallory her tubes in her ears for crying out loud but this is a MAJOR life altering surgery.. Am I that STRONG?? I know Maccoy is a fighter and he has to be strong to deal with all this. And while we don't go to church every Sunday I do believe in God and I do believe or I have to believe that God will take care of my baby....
We got the packet of information from the hospital a few weeks ago and I opened it and read a few things and then I put it back in the envelope because it made it all to real and I couldn't handle it... A few days later I got brave and I opened it and read it all of course I had a meltdown but what good/caring/loving parent wouldn't reading things like complications, breathing tubes, hear lung bypass?? The main thing we have to worry about in the next few weeks is keeping Maccoy healthy. Any illness within the next 4 weeks pushes back surgery for him and with his "numbers" the way they are that really isn't a good thing.. I don't know how many times we have asked but we are asking again IF WE ARE GOING TO BE SPENDING TIME WITH YOU PLEASE LET US KNOW IF ANYONE IN YOUR FAMILY HAS BEEN IN SICK WITHIN THE LAST 7 DAYS THIS INCLUDES FEVER,VOMITING,DIARRHEA,COUGH AND RUNNY NOSE. Thank You!
the other thing we have to wonder/worry about is Cayne. Of course this will be hard on him, this is his Best Friend the one he has been right next to for the past 16+months, his playmate, the one who's ears he pulls (LOL) , they say that twin bond is amazing so I guess we will get to see that in action. Also the fact is Cayne and Maccoy are spoiled they are my last babies and I have spoiled them rotten along with everyone else in this house.. They will NOT take bottles, the love to sleep with Clint and I , I even lay down with them at night to put them to sleep. I know I shouldn't but I do and I LOVE every minute of it! With that being said Cayne will have to be with us 24/7 so that he can nurse so after contacting the social worker at Children's Mercy I have found out that they are very accommodating to the twin in fact Cayne can be with me 24/7 he is what they refer to as an "extension of me" so even though nobody under 16 is aloud in the Intensive Care Unit Cayne will be able to be there with Clint and I and his brother, he will also be able to sleep at the hospital in Maccoy's room when he moves to the "regular" floor. It sounds like everything concerning Cayne is going to work out well. My girlfriends being the WONDERFUL ladies they are have offered to come to the hospital while Maccoy is in ICU to take turns caring for Cayne so that Clint and I can focus on Maccoy! And my AMAZING mother in law will be holding down the fort here at home making sure the kids are taken care of and that is a huge job in itself. We are so lucky to have such Great/Loving/Supportive Friends and Family. We wouldn't be able to get through this without those of you who understand how SERIOUS and SCARY this is! Thank You!

2 comments:

Lauren said...

Melissa,

I know that open heart surgery is scary and life altering... my parents have been there twice with me. Keep strong, be positive, and words of wisdom from my mom to all CHD parents facing surgery/recovery "'deep breaths' I know all to well......relax. stay strong, remember your on a mission, read your kids chart, ask questions, do your research, and anytime you feel things aren't right......don't be afraid to speak up and be heard!"

I will keep Maccoy, you, and the rest of the family in my thoughts and prayers! Hang in there!
And try to stop asking "Why?", I know my parents did it and I do it sometimes, but it will eat you up inside! I try to think postive, I believe I was given a CHD for a reason and take it as a blessing in disguse.

Sending LOTS of **Heart Hugs**!

With LOTS of Hope, Love, and Faith,
Lauren (22yr. old w/Tricuspid Atresia, HRHS)

Blog: www.laurensheart.blogspot.com

Anonymous said...

I haven't been on here for awhile, but my heart deeply goes out to you.We will do whatever we can to make this easier for all of you and be there as long as you need me.