Wednesday, June 26, 2013

Early Intervention: The Intake

So this afternoon we had our first meeting with the Early Intervention Program. One of the Service Coordinators, who happened to be a RN, came to the house to discuss Giovanni's participation in the program. The one thing that I learned is that with a diagnosis of CP, he automatically qualifies for the program. Now this doesn't mean that he will have to use the services, but if we want to we can.

For those of you who may not now, the Early Intervention Program is a statewide program that provides many different types of early intervention services to infants and toddlers with disabilities (birth to age 3) and their families. It is led by the Department of Health. This is a program that every family has access to and it is not based on income. Some of the services that they are offer include:
  • assistive technology devices and services
  • audiology
  • family training, counseling, home visits and support groups
  • medical services for diagnostic purposes
  • nursing services
  • nutrition services
  • occupational therapy
  • physical therapy
  • speech-language pathology
  • vision services
  • special instruction
  • health services
I was very surprised to learn that there is no cost to us for this program as it is a State mandated program. They try to bill the insurance for some reimbursement but since my health plan is a national plan, it does not have to adhere to New York State Insurance Law, therefore they will not reimburse anything. This kind of made me feel bad considering how expensive the insurance is to carry!

The next step is the evaluation. For our specific evaluation a physical therapist and a speech-language pathologist with come to the house to assess Giovanni since those are the areas where we have the most concern. I should hear by Friday when that will be.

I am not quite sure what to think about all of this. If anyone has any experience with an Early Intervention program, I would love to hear from you! 

Sunday, June 23, 2013

Thank You

Thank you to everyone who commented on my last post, and to those of you who sent me private messages as well. If you are just "tuning in" you can click here to be brought up to speed.

Since being given the news of his diagnosis, I have been flip-flopping back in forth with being angry, sad, and hopeful. I am dealing with the sadness as best I can. The anger is a different story. I think the problem is that I don't know who, or what, to be angry at. I am angry that more shit has been thrown at me. With everything that I have had to endure over the past 4 years, isn't that enough? Don't I get a break?

I am also confused about who to be angry at. The neurologist told me that the brain injury either occurred in utero or at birth. If it occurred in utero, is this my fault? Did I force my body to go against its abilities and create a child? Were all those assholes who told me that maybe I wasn't meant to be a mother, (referencing my infertility) right? Did I fail Giovanni? Typing those words make me want to scream and throw up at the same time!

I also keep playing his birth over and over in my mind. I wanted a c-section right from the beginning. My immunologist sent a letter to my MFM suggesting that I have a c-section. They insisted on trying a vaginal birth so I just went with the flow. Is this my fault for not advocating for my unborn child and demanding a c-section. All I can remember is looking over my oxygen mask and seeing the look on the MFM's and Resident's facees. I remember the MFM yelling at me that I couldn't stop pushing as we had to get him out now. I will NEVER forget the look of panic on their faces. I will never forget hearing the words "we don't have time" in reference to moving me to the OR for an emergency c-section. I will never forget the feeling as the NICU nurses whisked Giovanni away from me. All I could do was scream the words "is he okay" over and over again, while no one answered my screams. The few minutes that he was away from me felt like an eternity. I thought that I lost my baby boy.

Is this my fault? Could I have or should I have done something different, something more? I will never forgive myself.

Wednesday, June 19, 2013

Breaking the Silence

I have been going back and forth about sharing this information on my blog. There was a part of me that wanted to keep this private but there was that part of me who knows that I have always been blatantly honest on here and that my honesty has helped others in the past who have struggled through similar situations. The latter is why I decided to share. Here it goes...

During Giovanni's birth we experienced many complications. For the full story click here. To sum it up, Giovanni got stuck in the brith canal for a prolonged period of time which caused some significant decelerations in his heart rate. His heart rate was in the 60's and would decelerate into the 40's with each contraction. To make a long story short, we didn't have time to go to the OR so they ripped me open and yanked him out (sorry for the visual). He was whisked off by the NICU team into a private room where it took a while for us to know what was going on. While he didn't need to be resuscitated, it took him a little while to cry and things were pretty scary. I don't know what his first APGAR score was, but the second one was a 9 which was very the time.

Since about a week old, I starting noticing these jerky movements. If he wasn't conscious during these, I would have thought that he was having seizures. Our pediatrician even picked up on this, mentioning it on several occasions, but always chalked it up to an "underdeveloped nervous system". As time went on we started noticing other issues. Feeding was a big problem. He was readmitted to the hospital as he was losing too much weight. He was choking while breastfeeding and even choking on preemie nipples when he had a bottle. We noticed that his head was hyper-extended to the upper right side. He was diagnosed with torticollis, but we weren't convinced that was it in its entirety...nor was his physical therapist.

As time went on he started to develop other odd things despite the fact that he was reaching all of his milestones at appropriate times. We noticed that his left arm seemed to get "left behind" quite a bit and when he would rake food off of his tray with his hands, he would get the food into his left hand and that is where it would remain, clenched tightly in his fist.

A couple of months ago his physical therapist mentioned that while he was making progress with his range of motion in his neck, he seemed to be quite stiff and rigid, and that his overall movements were not fluid. She told me that she was going to contact our pediatrician and recommend that Giovanni see a neurologist for a consult. The pediatrician agreed.

Going into this appointment I already knew in my heart that something wasn't right, but my brain kept telling me that everything was going to be okay and we were going to be told that these were just quirky behaviors, something I refer to as Giovanni-isms. Needless to say that my heart was right.

The neurologist was quite pleased with his cognitive development. He described Giovanni as a "bright and alert" boy and even went on to point out that with his attentiveness and level of interactions, that "there is no reason why he can't get straight A's in school". I thought that was pretty funny. One could only hope.

It wasn't until he moved on to the motor part of the neurological exam that he started to note some issues. He noted that Giovanni had increased tone in his upper extremities along with increased reflexes and clonus in his lower extremities. He also noted quite a bit of "jitteriness". After the exam was complete we sat down to discuss his findings. The first thing he said was that we needed to get an MRI of Giovanni's brain. My heart immediately sank and I wanted to throw up. He said that it appears that Giovanni has suffered some type of brain injury, either in utero or at birth. The MRI would show us where the area of injury is and that will tell us when the injury occurred. Because of Giovanni's age, he will have to be put under general anesthesia. He then started going over his findings and explaining what everything meant. Then, the words I have been dreading since his first week of life were spoken. Cerebral Palsy.

While his case is considered mild it was still hard to hear. So many emotions starting running through me from sadness to anger to fear. I won't go into my whole psychological perspective on this now, but I will say that I am slowly digesting this and doing what I have to do. I will save all of that for another post.

Since I was in such shock, despite knowing in my heart that something has been not quite right all along, I couldn't make any decisions at that time. I told his neurologist that I just needed time to digest everything. He said that was fine and scheduled a follow up appointment. I am planning on doing the MRI sometime within the next couple of months. Since the MRI isn't going to change anything, I am in no rush to do it since it carries risk because of the anesthesia. When I am ready I will do it. And that is that.

No matter what, he is still my perfect little boy! I just love him so much!


Saturday, June 8, 2013

Officially a TAC Sister!

Last Sunday night, June 2nd, I left my husband and Giovanni for the first time ever and boarded the plane, Chicago bound. I landed shortly before 7pm and made my way to my hotel which was close to the airport. Once I got settled in, I walked across the parking lot to a TGIFridays and had my last supper.

4am came very quickly. I wanted to give myself enough time to shower and catch a cab as I had to be at the hospital by 5:45. Even though my taxi driver drove similar to the one in Rush Hour 3, I made it to the hospital alive, and more importantly, on time.

The lobby creeped me out a bit as it looked like something from a Sci-fi movie. It was like I was waiting to have an alien heart transplanted into my body. Nice, but not what I am used to.

About twenty minutes after I checked in, the greeter (yes greeter) came to bring me to the surgical waiting area. They asked me a bunch of questions, got my IV started, and got me prepped. Dr. Haney than appeared from behind the curtain. I don't know why but it was almost like a Wizard of Oz moment. I have heard so much about him that I almost idolized him. It was almost like a celebrity meet and greet.

He must have spent a good twenty minutes going over everything with me. He even told me that with my history, he was going to put in a double TAC so that my cervix would be bionic. He shook my hand and away he went. We were on our way to the OR.

I don't remember too much after that except for the fact that I yelled at the Anesthesiologist as I thought that she jipped me on the Vercid. She didn't. I was out.

I vaguely remember riding in an elevator but the first real thing I remember is that they were asking me to help them transfer me to my hospital bed in my room. I know that I was yelling at them that I was in too much pain and that when they introduced to me to the button that controlled my pain meds. Dr. Haney had ordered a PAC for me. Yay! I starting pushing it and is started alarming. That is when they told me that the button could only be pushed once every 8 minutes. Ugh! For the next 24 hours I was in and out of a drugged induced coma. They brought me something to eat but I quickly requested Reglan for nausea as just the sight of food made me want to throw up. The one good thing is that there is nothing but private rooms in this hospital so no one had to put up with me.

By Tuesday morning I was a bit more with it as they removed the Foley catheter and took away my PAC at 4am. They were supplementing me with Vicodin and Benedryl, as apparently I was breaking out in hives from them, so I was still VERY groggy but able to function...somewhat. I made the conscious decision to refuse all pain meds after 10pm that night as I knew that I had to be alert enough to navigate the airport that next afternoon. I was not a happy camper.

Wednesday around 10am I left the hospital, went for another taxi ride from hell, and proceeded to the airport. Dr. Haney suggested that I arrange for wheelchair services for the way home, so I did. Let me just say that it was the most embarrassing experience in my life. To start, they herd all the "disabled" folks to a clearly marked designated area for us...similar to a bull pen. It was full of people just sitting in wheelchairs, waiting for attendants to push them to their designated gates. The one good thing is that I got right through security without any problem. Once I got the gate, I sat in my wheelchair and popped a pain pill.

I was so happy once we landed back home. I was the last one off the plane as they had to get a wheelchair for me so the anticipation of seeing my husband and son was killing me.

This is what was waiting for me. I was so glad to be home.

The past few days have been rough. My abdomen is so distended that I can't wear any pants without an elastic waistband. Even though I am still in a lot of pain, I haven't been taking any pain meds during the day as I don't want to ignore Giovanni or my husband. I know that my husband would understand, but Giovanni would not. My husband has been awesome as he has been doing all of the physical work around the house, taking care of Giovanni's needs, and taking care of my needs. He really is the best.

Right now I am aiming to go back to work on the 17th. Dr. Haney said that I was being ambitious but we will see. The incision is pretty much that of a c-section and normally it takes 8 weeks to recover...and I am shooting for 2. We shall see I guess.