I feel this song is very appropriate to my situation right now.
I'm only human. I bleed when I fall down. I crash and I break down. I can be a good machine. I can hold the weight of worlds if that is what you need; be your everything. I can do it. I will get through it.
But
I can take so much, til I've had enough.
There are some words that are knives in my heart right now. Not just the words of the new diagnosis, but also really simple words of criticism. Just as a warning-- I'm super fragile. Please be kind with your words and refrain from judging me at this emotional time. I am a very open person. I vent when I'm upset. I ask questions when I'm confused. I cry when I'm sad and I yell when I'm mad. And I am doing this all very openly right now on my blog and on the world of Facebook. Be kind, be patient, be understanding. I am not blaming anyone. I am not bashing anyone. I am not praising anyone either. I'm just being real, and I'm letting myself go through my emotions. I invite you to be a part of that journey with me, but in participating I ask that you refrain from judgment. Until you truly have walked in my shoes, you honestly have no idea what I am going through mentally, physically, emotionally and spiritually.
That being said, how about an update?
Quick Summary: We got a call from our craniofacial doc today who says there is no need to do more tests. We have all the evidence we need to move forward with surgery. I'm thrilled Jayson does not need to go through any invasive procedures! I have an appointment with our current cranio doc and a new neurosurgeon on Tuesday. (Our current neurosurgeon has asked to be excused from Jayson's care. This is heartbreaking and confusing, but I will look into this later). Additionally I met with another craniofacial surgeon today for a second opinion. Also, I have been in contact with another craniofacial doctor via email who is the head of a specialized Craniofacial Clinic in Dallas, Texas. We are looking very closely at these three doctors/surgeons, their strengths, their approach, and their follow up.
We have really 2-3 options right now and we will need some time to think about the pros and cons, and pray about which is right.
1. Our current craniofacial doc with a neurosurgeon at Primary Children's wants to do what is called a Posterior Vault Distraction. In this process a metal device is placed into the skull and J is stitched up with a couple of bolts sticking out of his head. After a short hospital stay, J would come home and for 2 weeks Mike and I would adjust these bolts so that they slowly stretch his skull and skin. He would then have to leave the device in for a couple of months to let things set, then go back into the OR to have it removed. It will allow for up to 30% more space and the likelihood of more surgeries is low. However, there is a good chance of infection to the bone and brain which is really scary. Good and bad.
This team has a lot of experience, comes highly recommended by our Comprehensive Care doctor (who I respect very much). They are also local, Personally, I have a hard time with the idea of working with this team since this cranio doc went years without diagnosing Jayson, dismissed us when we came to him 2 weeks ago asking for a CT scan, told us Jayson didn't have cranio, said he'd call with CT results and didn't, and then pointed blame at me yesterday in a phone call asking why I hadn't had Jayson in the OR for an eye exam in the past. Um... I didn't know I should have, because no one thought Jayson had cranio. So yeah, I'm going to listen to what they have to say but I'm not crazy about this team due to their negligence with Jayson. I will meet with this team on Tuesday to discuss details about surgery, and schedule it if we decide to go with this team.
2. I joined a couple of cranio support groups over the past 48 hours. There were countless suggestions that we see Dr. F in Dallas, Texas. He specializes in craniofacial, directs his own clinic, has many awards and recognitions, has fabulous bedside manner, isn't about the almighty dollar, willing to consult via web and phone, and willing to offer free consult before surgery. Everywhere on the web we has 5 star ratings and not a single bad comment. He commonly deals with Multiple Suture Craniosynostosis and very rare, complex kids. 90% of his patients are from out of the area and state. He does not like the Posterior Vault Distraction approach due the risks of infection. He prefers Cranial Vault Expansion which is taking the skull and pulling it apart and out about 1 cm (at the most) and stitching things back up. The skull slowly starts to fuse back to itself, but can often leave holes if the child is over 12 months. Often times these holes need to be filled back up. This is also usually a more temporary fix and more surgeries are basically inevitable since you can only add less than 1 cm of space at a time. This is because the scalp still needs to fit over the skull to sew up. In the other approach, the skull and skin are slowly stretched so more space can be made. The benefits of this approach include that it is done in the OR and we don't to have to maintain protruding rods out of Jayon's head nor tighten them on a daily basis. The risks of infection are lower and the doctor explained that Jayson's brain may or may not move and spread out to fill that extra space anyway. So if his brain chooses not to move and spread out once either procedure is done, it doesn't matter if we made 1cm or 3cm of space. In that case, another part of the skull may need to be opened up to make room in another surgery. This doctor asks that we send him our medical records, then we'll schedule an appointment a couple of weeks out to see him in the clinic and then have surgery a day or two later. He will only take us if our medical records show that this surgery is medically necessary, which they should.
We are very interested in having this doctor do the surgery. He really is the best. However, I haven't met him. Dallas is a long ways away. Having surgery there would be very difficult without support of our friends, family, and other doctors. It may burn bridges or hurt feelings of our other doctors here to go somewhere else. Also, it will be expensive. Travel expenses, food expenses, lodging expenses, and out of network hospital expenses. But ultimately, Mike and I are feeling strongly that we need to go to the doctor who has the most experience, and this guy is it. We are leaning towards this option.
3. I discovered that a craniofacial surgeon who studied under and worked with Dr. F in Dallas now works in Utah! He works with Primary Childrens Hospital on select days and operates very much like Dr. F. He, too, prefers the Cranial Vault Expansion approach and he has 10 years of experience. I asked him if he has had a lot of experience with mutliple suture cranio surgeries and he said that Primary's has done a lot! 15 in the past 10 years.... lol Yup, apparently 15 is a lot. Guess this gives you an idea about how rare this type of craniosynostosis is. This doctor operates very much like Dr. F and he is the one who explained the CT report and images to me, as well as the difference between the two types of surgeries. He was really good to explain, show pictures and images and answer my questions. He was also very enthusiastic, personable, and confident. He learned from the best doctor and he performs 2-3 cranio surgeries a week.
I was not a huge fan of this doctor. He was personable but almost to the point of lacking professionalism. He had a car salesman approach and compared himself to our other cranio surgeon frequently. He constantly explained how he was better and his approach was best, and subtly put down the other surgeon. His way of talking about patients was almost humorous, but in a way disrespectful. He referred to his patients as heads. He'd say things like, I do a lotta heads. Had three heads last week. Hey nurse, grab me that picture of that head we did last week. He was referring to the patient, not just the head. He also said a few times, "Well there are many ways to skin a cat, either way, you're still skinning the cat." This almost made me laugh. This catchphrase is not my favorite anyway, but used in the context of actually talking about removing the skin and skull from a child was both funny and inappropriate. He pushed so hard to sell himself that I wondered why he needed to work so hard? Is he pushing for more patients? Is he needing more patients for his research? Does he want to test his methods so he is trying to get us on board? Or maybe, he's just really excited and confident? I don't know, but I gotta think about this guy. If I was 100% confident in his abilities to treat my son, it wouldn't matter how quirky he was. I'd have him do Jayson's surgery. But I'm still undecided.
So that's where we are. Again, please realize I'm not trash talking anyone. I'm just being real about my feelings and my experiences. Any one of these three doctors could very well be cutting open my son's skull, so I do not think any of them are bad doctors or incapable human beings. They all have their strengths and their weaknesses. I just wish they didn't ;)
I had a friend message me today and ask how I was feeling, REALLY. I thought of this analogy:
I feel like I'm stranded in the middle of the ocean, just doggy paddling trying to stay alive. I have some life vests thrown at me. However, I'm so overwhelmed with the fact that I'm drowning I can't logically pick which of the life vests I want. None of the life vests seem appealing because I just keep thinking about how much it sucks that I'm stuck in the middle of the ocean. I'm tired, angry, confused, and overwhelmed. All of the life vests are a life-saving option, but my brain can't decipher which is best even though any would be much better than none. All I can think about is how much I wish I wasn't drowning.
That is where I'm at right now. I don't think I'm ready to choose because I'm still so heartbroken that we are in this situation. I haven't accepted it yet, but I think I'm getting there. I just need a little time. Luckily, we have it. The doctor today said that Jayson's fusion of 5 sutures at his age is one of the most complex situations he's seen. But clinically, Jayson is doing so well. The doctor does not feel this is a super urgent situation. We can take our time and carefully select the best option and the best doctor for Jayson. He's in pain, and Intracranial Pressure is dangerous, so it's urgent, but not an emergency. We can cautiously look at our options, and make a decision. And if all else fails....
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