Here we go Again!!!

Here is a little back story as to Why Matthew had surgery again.

When he was in the hospital a month ago he missed his 1 year appointment with his pediatrician. So I rescheduled it for 2 days after he was discharged. During her routine assessment she discovered his head was really big. Like off the charts big. He head was in the 25% for all his other visits, so this was quite alarming to her. She immediately told me to get into contact with a neurologist. I called and talked to them and they did what they do and I ended up getting an Appt for December 21st. I called the neurologist office to see if I needed a CT scan or MRI before his visit and they basically just blew it off and said they would decide at his visit. They then told me they needed some extra paperwork from my Pediatrician. So I took her the paperwork that she needed and she wanted to re-measure Matthew's head. It was bigger from 2 1/2 weeks ago when he was in there getting his Synagis shot. So she suggested we take him to the ER. So that is what I did.
I got up yesterday morning and got Finn off to a friends house and Matthew and I headed to the ER. We arrived at about 10:20am and by 10:30am I had seen the Doctor and by 10:50am we had had a CT scan. CT results came back about 10 minutes later and is was determined that Matthew had severe Hydrocephalus. Needless to say they said Surgery would be today and was scheduled for 2:00pm. GULP!!! Another Surgery???? The neuro surgeons PA came in and did a procedure on Matthew in the ER. He stuck a decent sized needle in Matthew's soft spot and drew out some of the fluid. They need to make sure it was not infected before they knew which procedure they were going to do. About 30 minutes after that was done we were rolled down to pre-op and he went into surgery at about 1:30. He did not have an infection so they ended up placing a shunt into his head. (I will do my best to try and explain this below). The surgery itself took about 30-40 minutes but he was in recovery for quite awhile before I was able to go back with him. He did great during the surgery. This one seems to be a bit tougher on him then even the previous one. Seems to be in more pain. Which is totally understandable.

What is Hydrocephalus?
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002538/

What is a shunt?
So what they told me is that they take a straw type of a tube and run that from the head to behind the ear and connect it to a valve behind his ear.From the valve they place another tube from the valve and run it down his neck, chest and into his stomach and the fluid can drain into it. The valve it electronic and completely programmable. So the Doctor can adjust it as needed. We hope he doesn't have to have this replaced, but it is a very real possibility that he will need the shunt replaced several times in his life.

My poor baby boy has been through so much in his short little life. I just hope he can catch a break soon. It terrifies me beyond belief every time he goes into the hospital. I never know what will happen.I try not to worry too much, but it is impossible. And the stress that you endure while your child is in the Hospital/Surgery is unlike any other stress I have experienced. It is not a healthy stress for me. It is a stress that makes me not want to eat, drink or sleep. All these things you need to be there for your baby and I can not seem to MAKE myself do any of them. I am usually the opposite with "normal" stress I want to eat ALL the time. I am hopeful this will be a short hospital stay and he will feel SOOO much better after this. All I want is my happy baby boy back. He has been miserable for about two months now and it just breaks my heart knowing that we could have had this taken care of sooner, if I hadn't waited on the neurologist clinic. I have learned a lesson and that is to ALWAYS trust my gut and Mommy instinct.

We just added one more thing to have to worry about all the time now. But I am forever greatfull to have my little boy here with us. So many CDH families are not as lucky as us. I do not take a single day with Matthew of Finn for that matter for granted. I cherish every moment I have with them, because you never know when you won't have another one.

Have I ever said that I HATE CDH.. Well I do. It is an evil awful defect that doesn't just get fixed with the repair surgery. It is a life long problem for a lot of kids and Matthew is showing that this might be the case for him. I urge you all to help raise awareness ANY way you can. Matthew and SOOOOO many other babies need it. I wish no other families had to go through what we have. Sadly there is a baby born every 10 minutes with CDH and 50% of them DO NOT make it. I know I have said this before and I will DEFINITELY say it again. My efforts for raising awareness are far from over, they may have just started.

Thank you for reading,
Jaime