Frustration, frustration, oh and grateful.

Cameron has a funny way of telling us what he wants or doesn't want. In fact this past weekend his shunt malfunctioned. Something his Dr's told us wasn't likely to happen for awhile because of the type of shunt he has. But if it's going to happen and be unlikely, then Cameron is the kid it will happen with! So anyway, Thursday I became concerned that his soft spot(which is still open because of the way his bones grow)was a little too full and bulgy to be normal. Sometimes in kids with shunts, their soft spots can become hard and full if they are constipated, or really upset, but when they are still and upright the soft spot should be nice and smooth. His hadn't been for a few days, but I had thought he was constipated, but on Thursday when he had had plenty bowl movements and it was still hard I began to worry. I called our regular pediatrician who agreed to see us Friday morning. I took Cam in and the Dr. was going to press on his shunt valve, and when he does this it should push in and fill up, if it's working properly. He couldn't even get Cam's to push in. So we were told to head to Winston! I called Paul and he came home and we loaded our car with a few suitcases because we were sure we would be there for a while. We got to Winston around 1 pm, and went to the ER. They quickly with a CT scan discovered that Cam's shunt had pulled apart at a point in this neck where the tubing runs. This requires surgery to fix. So Cam was put on the books for Saturday morning surgery.

As a side note let me just mention how difficult this stay in Winston was. We felt like there were nothing but idiots working the day we went in. I'm sure that we were stressed and worried, but the lack of common sense that we felt was going on around us was increasingly upsetting. Maybe it's because we were spoiled back in November for Cams heart surgery in Boston, but some of the things were just unacceptable. OK that is my rant on the anger from the hospital.

Saturday morning came early and at 9 am we were down in the surgery holding room waiting for them to take my baby away for the 8th time. This doesn't get easier, no matter how small or big the surgery, I cry every time. I should be a pro at this, but something about them walking away with him knowing they are about to do brain surgery terrifies me! At about 10 am they took him back and Paul and I went to the waiting room.......to wait. About 45 minutes later the neurosurgeon comes out and tells us they are having a hard time intubating Cam. I told him they had the same difficult time in Boston and needed ENT to come intubate him with a special scope. The neurosurgeon said ENT had been called and were on there way, but that they were going to cancel the shunt revision until they could figure out what was going on with the intubation. This was very frustrating for us to hear, but we were also glad that they were working on getting the problem resolved. About an hour later the ENT finally comes and tells us they were easily able to intubate him and that nothing was wrong and that they were going to call and see if neurosurgery would come back and go ahead with the surgery since he was under. At this point Paul and I were both very frustrated with the events that had gone down, but told them to yes, please proceed with the surgery if he was already under.

They came back shortly and told us that they were able to proceed, and that someone would come and talk to us when the surgery was over. And about 45 minutes after that neurosurgery called on the waiting room phone and told us that all had gone as planned and that they had fixed his shunt and that we could see him in about 30 minutes. We were so relieved and grateful that his surgery was over and successful. But at the same time we were so frustrated and the events that had occurred to get to that point. It was a mix of emotions that I could care less to have to experience again. And as they said it would, 30 minutes later we were with our sweet Cam in the PACU, waiting to go back up to a regular room and begin the recovery process.

So, because of our eventful weekend, and the fact that Cam had anesthesia, we now have to postpone his hand surgery......YET AGAIN. I cannot put into words how I feel. I'm so sick thinking about how much effort I have put into not letting him get sick and keeping him well for this hand surgery to happen....and then this. Something I couldn't prevent, something that had to be fixed with surgery. This is why I started out by saying Cam has a funny way of telling us what he wants, because I'm pretty sure this is his way of telling us that he likes his fingers just the way they are, and he doesn't want surgery to fix them! I on the other hand was so excited about this surgery. So excited to start this process and hopefully have it over before the end of summer. But now it's looking like it may be April or May before we can get back on the books. Literally I am sick with frustration. I am overwhelmed, and I am so, so tired. But I am grateful. I'm grateful that I was able to catch his shunt malfunction before it affected his brain. I'm grateful that he was able to get it fixed and that he is doing ok. I'm grateful that even though we have to put of this hand surgery, one day Cam will have fingers, and we will be able to go to Boston to get them!

So for now we just wait. We wait for Boston to call and tell us when we will be able to come back up, and then we start preparing all over again! Cam is one funny baby I tell ya! Heck maybe now he will be walking all around before the hand surgery. That would be something to be excited about!! BTW...We got home yesterday afternoon from the hospital, and even though Cameron is super cranky and sore, he loves being home, and we love being home with him. His poor little hair was shaved where his incision site was made, so I for see his first hair cut in the near future! I really am grateful for my sweet Cam, and for being able to be the one that goes through all of these things with him. However, it doesn't take the frustrations and anger away that my child is the one that has to go through it. I still struggle when these things happen. I'm not sure if that will ever go away. I hope it does. I hope at some point in this journey I am able to look at these situations and not have that feeling of anger and sadness. But that I can just look at it as our life and what we do. Maybe one day. Maybe not. But for now we are home, Cam is good, and Boston is postponed. Say a prayer that it's able to be quickly rescheduled and that we don't have to wait too, too long for some tiny little fingers!

It's been awhile...and alot has happened!!!

So since my last post....We have been through a major surgery, celebrated two holidays, I had a birthday, and We rang in the New Year...ALOT! Now that it's 2012 and we are supposed to make resolutions...one of mine was to keep up with my blog a little better. I mean I really do love this blog. It's kind of like my journal, only public, but non-the-less it's my outreach to vent my feelings and to keep everyone updated on the various happenings of sweet Cam.

So first off...THE BIG HEART SURGERY:
We arrived in Boston on Tuesday the night before all of his pre-op, we got checked into the place we were staying and played with cam until it was time for bed. Then we got up super super early to head to the hospital to start all of the pre-op stuff. It started off with blood work, some x-rays, then a sedated echo. For all of those things Cam was so good. He behaved like a champ, and was super sweet with all the nurses. Then after his echo, we were supposed to meet with his Surgeon and the Cardiologist for the first time. It was very intimidating meeting the Cardiac Surgeon...the person that was going to be stopping my child's heart to then repair it, to then start his heart back up again...it seemed unreal to me that there was an actual person that could do this. But sure enough he was there....Dr. Frank Pigula, one of Boston Children's most expertise surgeons. He was so kind. He talked to me very calmly and told me that he was going to take great care of my Cam. He told me that everything would be great...I was in tears during this entire conversation of course, but his tone and his assurance helped ease my mind. Then we waited around another few hours to finally meet the Cardiologist...another saint...Dr. Peter Lang. This man is so funny. He was cracking me up, while at the same time explaining to me what Cam's heart looked like and what will happen once he has the surgery. He was great. I felt so confident in this amazing team. Then after an all day long run of appointments we were finally able to leave with a return time to the hospital for 6 am the next morning.

Surgery Day....was really, really hard. I watched them sedate my precious child, and then I watched them wheel him away in his bed....It was so hard for me to let him go, they had to force me to place him on the bed, and even then it was more like them taking him out of my arms...I just couldn't let go. As we watched him go down the hallway, all I could think was that this could be the last time that I could see my baby alive. They are going to stop his heart and what if they can't start it back? NO mother should ever have to experience that feeling...but so many do. I met tons of moms just like me, waiting in the Cardiac waiting area for their child to come back alive. IT's not Fair. It's torture, and it's pain, and it's the most amazing thing all at the same time. Because it's you loving someone so much that when you even think about the thought of them not being there, you don't want to live yourself. That is beautiful to me.

Cam went into surgery at 7:30 am and Dr. Pigula was out talking to us by 1pm. We got to see him for the first time after surgery around 2. IT was horrible. He was laying there, intubated, white, knocked out! But he also looked really good for just having open heart surgery. He had two tubes coming out of his chest draining the blood from his chest cavity, and he had a catheter to drain his urine, and he had a ton of wires everywhere that were hooked to about 5 different monitors. Very overwhelming. The nurses and Dr's assured us that everything had gone great and expected him to make a great recovery. And that is just what he did. By day 6 post op, we were being discharged from the hospital!! Cam did wonderfully well, and his heart looked great! We had a follow up with the Cardiologist in Boston on Friday, and then headed home that night. It was the greatest feeling to be going home with our sweet boy knowing that this terrifying surgery was behind us.

We made it home the Sunday before Thanksgiving. So we got to spend Thanksgiving with family and then we decorated for Christmas! Christmas came and we celebrated at our home this year with all of our family, and it was wonderful. Cam's recovery was very fast, and now you can't even tell he had a major heart surgery unless you saw his scar that runs down the center of his chest. When we get ready for bath time he always rubs his hand up and down on the scar, and I make sure to tell him how brave he was to get that cool scar, and how proud I am of him! I'm sure he has no clue what I am talking about, but one of these days he will!!

Now that it's 2012, I look forward to a great year filled with love and laughter and being grateful for the amazing blessings that the Lord has given my family. Cameron is so wonderful and God, he knew what he was doing putting that little boy in my life. And although God and I have had our issues, and I've been really, really, angry with him, I know that at the end of the day, he doesn't love me any less! My iniquities are big, but God's mercy and grace are so much bigger, and this year I feel my heart and my soul yearning to grow closer to the one that loves me no matter what! I know that I will face more triumphs, but I pray that I can handle them just as I've handled the ones before. Love and Life....My new motto....oh and Happy 2012 everyone!!

7 days

Ugh...saying that makes makes me want to throw up....7 days. It can't be possible that almost 8 weeks has gone by since we heard the news that Cameron was going to need this surgery. In 8 weeks he has made some amazing progress. He can crawl, and stand to pull up. He cruises around on the couch...not alot or very fast, but he does. He says mama, and now is starting to mimic the b sound. He was the cutes caterpillar ever for Halloween, and if it's possible, I love him more and more everyday. But in 7 days they are going to take my baby from my arms for his open heart surgery. Don't get me wrong...they will probably have to pry him from me, but however it happens, November 10th will be here before I will ever be ready, and right now I'm scared. I visited my OB yesterday to see if she thought some meds would help me with my anxiety. She gave me a prescription for adavan and cimbalta...yes that's right...a medicine for depression. Am I depressed? I asked my OB this in a way that implied I already knew the answer...so she just gave me the prescription and a hug. We have a great relationship, she and I. She saw me through the last 10 weeks of my pregnancy after finding out about Camerons syndrome and boy was I a hard patient to put up with...so on several occasions I came to my visits with her bearing gifts! She was amazing through my pregnancy and is still amazing when I go to her for this type of thing. I feel so ashamed. Asking for medicine to help with my issues....who does this? I mean before I had Cameron I had a pre conceived notion that people who took depression meds or pills for anxiety needed to man up and realize how to deal with it....NOW I want to apologize to all those who suffer from depression and anxiety because I realize how real it is....how completely real it is. But still it's such a humbling experience for me. I'm not this person. I am a happy, go with the flow, bubbly person....not this person that I have become. The sad, scared, anxious, depressed person I am is not who I was, and yet I feel so close to this person that I am now. It's a crazy battle between my mind and my heart.

I'm gonna do this. I'm going to go to Boston and I'm going to put a smile on my face for my child, and I'm going to beg and pray and plead. Then I'm going to do those three things some more, until I can't do any of them any longer. I'm going to pretend that I'm grateful for the time I've had with Cameron, and act like I have full confidence that everything is going to be just fine! But in reality, I'm selfish....I'm not grateful for the 14 months I've had with cam...I WANT MORE. I don't have full confidence that everything will be fine...in fact I'm scared to death...about everything. I do have confidence in the Dr's, I do....I am just so scared. But I will take my pills, and I will take Cameron to Boston, and I will do what I have to do. I will do it because I have to. I have to do it.

Yesterday I was feeding Cameron, and we were playing and he was just smiling away...I was telling him to say mamamamamam...and then he was laughing at me because I was dropping my head toward him and raising my voice really high....and in that moment...I realized I was crying. I had a stream of tears streaming down my face because I'm not ready to give him up...and even though this surgery isn't something that has been expressed to us as dangerous or anything like that... it's still heart surgery...It's surgery. And surgery, even though it's a huge part of our life is scary, and heart surgery is really, really scary. So when I wiped my tears and looked at Cameron, he was looking at me differently. Like he knew that something was wrong but because he is only 14 months he didn't have a reaction like an older child might...instead just a look. And in that moment I realized I needed to get it together. I needed to be strong for Cameron because he is strong for me. He endures these surgeries and comes out fighting and that helps me. So I need to be that for him. And I will.

So Monday evening we are leaving to make this trip to Boston. We are heading up North to get our baby boy the best care available and to make sure that he is where he needs to be. I will try to keep everyone updated on our progress and the events that happen via my blog, but please keep my little guy in your prayers and he fights through yet another battle. He is warrior Cameron, and he will be amazing!