surgery day

Well, it's over. And I can't tell you how relieved I am! We didn't have internet access at the hospital (they have wi-fi, but we had a weak signal in our room, so I couldn't connect), so I couldn't blog yesterday. So this is how it all went down.... 


We were scheduled to arrive at the hospital at 7am for the surgery to begin at 830am. It was expected to last an hour and a half. We took Tate back to the pre-op area to get his hospital gown on (and he was NOT a fan, let me tell you!) and give him some cuddles before his surgery. We met with the anesthesiologist there, and got to sign the paper that says that I understand that a risk of anesthesia is death. I hate that form. I mean, I know I have to sign it, but I don't have to like it. Anyway, the nurse anesthetist brought Tate a cool little red wagon to ride to the OR in around 845am, but Tate wasn't having any part in that. So Rocker Birdie (Tate's hospital buddy) rode in the red wagon with his quilt, and Tate was carried off by a nurse, while yelling for his Mommy. Not my favorite part of the day. That, I am proud to say, is the only time I cried yesterday. I do admit to getting a little teary while waiting for his surgery to be over, but I wasn't the blubbering mess I was during his last surgery. Small victories, people... small victories. 


This is the last photo I took of Tate's eye before surgery... The purple "K" above his eye marks the eye that they're taking out. I'm glad that's a system that works!

So we went to wait in the adult waiting area primarily because you can eat on that side. (Yes, I have my priorities.) My awesome mom made muffins, and brought apples and bottled water, so we wouldn't have to leave the waiting area to go get food. We got a call at 915am saying that they had just started, and that intubation and everything anesthesia-related went well. 


My brother came to the hospital before work to wait with us for a while. My parents were also there waiting with us. This is my brother, Ted, on the left, Todd on the right. 

I had been told that we'd get a call every hour to update us on the progress of the surgery, so when we were called to the pediatric waiting area at 1015am, I walked straight to the phone at the desk to wait for the call, barely noticing our surgeon standing there waiting to talk to us! I was confused as to why he was out there at first. I just remember saying "It's over? It's really over?" And I'm pretty sure I didn't mean the surgery. This long journey, this journey that we've been on for 4 1/2 years.... it's over. Finally. Ok, maybe not completely over, but this huge hurdle that I've been dreading for 2 months... this was such a big part of it. The beginning of the end. So our surgeon, Dr Y, proceeds to tell us that this is something we will never regret. The eye had degenerated so much, that he said that without a doubt, we had absolutely made the right decision. Phew. I mean, I knew that. You've seen photos... you've heard stories. You know what we were facing. But it gave me so much relief to hear it from the guy who saw his eye, the whole thing, that we had made the right gut-wrenching decision. Wow. Thank you, God. Dr Y told us that they were taking him to Recovery, and we'd get to see him soon. An extremely long HOUR AND 45 MINUTES LATER, we finally were told he was waking up and we could go see him. The extra long nap may or may not have been from us keeping him up til midnight the night before his surgery. I couldn't really say. But when we walked to Recovery, he was sitting up (kinda) and drinking Sierra Mist. He looked good. He had a bandage over his left eye. He was quiet, but responsive. His bed was then wheeled up to his room, and we followed along, praising God that his surgery went without complications! 


Here is Tate, post-surgery, sporting the beautiful quilt that the sweet people over at Quilts of Compassion made for him before he went into the hospital back in August in Michigan. He was able to take the quilt and Rocker Birdie into the OR with him.

Getting some love and attention from his Nana right after we got settled into his room

The surgeon removed Tate's eye, inserted an implant behind the lining (the pink area like you see on the inside of your eye lid) and attached the muscles to it. They closed that lining, then inserted a plastic conformer in place of the eye (as a spaceholder while the eye socket heals). In 6-8 weeks, we'll travel to Burlington to visit the occularist to have his prosthetic eye made. 


Tate had lots of visitors yesterday, and he enjoyed every minute of the attention. He even ventured to the playroom with his brothers and his best buddy Aiden for about 15 minutes. He was worn out after all the visitors came, so he finally dozed off around 530pm. His friend Bri's amazing mom, Lori, brought us dinner and some yummy cookies to the hospital room. Tate slept through dinner, but he enjoyed his Happy Meal for breakfast this morning. :) Todd and I watched a movie last night while Tate slept, then dozed off ourselves. Tate slept until 730am today. He hasn't had any pain meds since the IV bag around 1230pm yesterday. I was concerned that it would wear off at some point during the evening last night, and that he'd wake up screaming in pain, but that never happened. I had a feeling that whatever pain he was experiencing prior to surgery might be just as bad or worse than post-op pain, and it looks like I was probably right. He still hasn't complained of pain, and when I asked him earlier today if his eye hurt, his answer was "Just a tiny bit." I can live with that, especially considering that I was told to expect significant pain for 4 days, and also because we know that this pain will end.

 Spoiled much? :) He got lots of fun gifts from friends who visited. 

Chilling...

Grandma was making him peanut butter graham crackers on demand. He loved every minute of it.

Checking out the playroom... he only lasted about 15 minutes, but we were surprised that he was up for it at all!

We were discharged this morning around 9am, and we go back Saturday morning to have his bandage removed. I'm not looking forward to that. I can see some drainage on the bandage, so I can only imagine what his eye must look like. We'll learn how to take care of the eye area while it heals, and I'm assuming that we'll get more information about our upcoming visit to the occularist. 


Overall, I'm relieved. That pretty much sums it up. I'm happy that the surgery went as well as could be expected, and that his pain level so far is so much better than I expected. As I was texting friends and family yesterday to let them know when he was out of surgery and that all went well, the response that I got most was "Yay!" I know why they were saying that. I really do understand. I was also super relieved that all went well... but I just felt like I couldn't celebrate that my kid's eye had just been surgically removed. I thank God that He was watching over my boy, and that we have gotten past this part of the journey. I don't want anyone to think for a second that I'm not thankful for Tate to be so close to pain-free, because I really am. And I'm hoping that very soon, I'll feel like REALLY CELEBRATING this part of the journey. 

I don't belong in Vegas...

... I don't like to gamble. The thing about Tate's eye condition is that it's pretty rare... there is no "normal". I mean, they kinda know what to expect with a typical PHPV case, but when things go a little haywire like they have with Tate, it's hard to predict a timeline on the rest of it.


When we arrived at the surgeon's office yesterday, it was the first time we had met him. He began by telling us that he doesn't perform an enucleation (eye removal) on children unless it's absolutely necessary. He went on to explain how removing the natural eye can affect facial structure as he grows (I keep picturing the guy from The Goonies, which I know isn't realistic, but I just can't get past it). He also described the two methods of replacing the eye... either a plastic sphere or a butt-fat graft (yes, I'm aware that's not the technical term, but it's how I remember it) that would be sewn in and attached to the muscles, over which would fit his prosthesis. With the sphere, we risk Tate rejecting it since it's a foreign object, and "spitting it out". But with the butt-fat graft, even though it should be better accepted, we face a possibility of graft failure. So at this point, Dr Y asks, "So what would you like to do?"... hmmm... I think I'd like to jump of a cliff now, thankyouverymuch. 


We have hit brick walls every step of the PHPV path. Most PHPV kids have anterior or posterior... Tate has both. Most PHPV kids have at least some vision out of their PHPV eye. Tate has none, and no chance of regaining it. Most PHPV kids don't ever have a problem with pressure... Tate has neovascular glaucoma. Most PHPV kids don't experience eye degeneration... Tate's started with band keratopathy (the calcium deposit over the cornea that makes him feel like something is in his eye) and has a bone growing in the back of his eye from calcium deposits, which causes him pain. So forgive me if I'm not 100% confident that the enucleation and prosthesis will go on without a hitch. I have this "What else?" attitude right now, and I just can't seem to shake it.


So back to my gambling analogy.... as I said in a previous post, Tate hasn't been complaining of pain much at all in the last 2 weeks or so. As far as I'm concerned, that's a God thing.... an answer to hundreds of prayers. I don't believe Tate is completely pain-free right now though. I do believe that his baseline for pain tolerance is a lot higher than yours or mine. So since he's not having additional pain right now, he's happy. Considering it wasn't that long ago that he was in enough pain to say that it hurt a lot, I'm happy too. So with his pain being bearable at the moment, we had to decide if maybe we should wait on the surgery.... give him that extra time to let his facial structure develop, so any asymmetry that might result would be lessened. But if we wait, we risk having to do it in "crisis mode" in the middle of the school year, disrupting his life quite a bit more. Or we go ahead with the surgery now, to relieve the pain he has, and we risk my kid looking like the guy from The Goonies when he's 19, and hating me forever because we jumped the gun on the surgery. Ok, ok... I know that's a little extreme, but I'm feeling pretty extreme these days. The point is that we don't know how long we'd have before he'd lose the eye due to it shrinking up and having to be removed, or the pain being intolerable. We don't know, the doctors don't know, no one knows except God. I explained to the doctor that we knew that removing his bad eye was inevitable, and I'd just as soon have it over with before he starts school in August. The doctor agreed with me that that's a benefit to doing it when he's young... kids aren't quite as mean at that age. When I asked him at the end of our appointment what he recommended, he said "If I thought that my child was in any pain, enough to affect his quality of life, I'd take it out." I appreciated his answer and his honesty, but I was still torn about letting my kid look like Sloth.


So what do we do? Well, I take the advice from a friend and ask my four year old what he wants to do. Yes, I've resorted to leaving a life-changing decision to a guy who entertains himself with Mickey Mouse Clubhouse every morning. I asked him in a hundred different ways, and his answer remained the same... "I want the doctor to take my eye out because it's sick and it hurts me." Me: "But when I've been asking lately if it hurts, you keep saying no." Tate: "No.... I've been saying it always hurts a little bit." Me: "So it's hurting now?" Tate: "No, it's not hurting now." Yep, that's pretty much how it went. So I had Sarah talk to him today too... She had almost an identical conversation with him. But it did make me feel better to know that he's more than ok with this surgery, he's actually saying he wants to have it done. He tells me he doesn't want his eye to hurt anymore. That's all you had to say, Tate. His surgery is scheduled for January 21st.