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.
Tate's surgery was originally scheduled for January 21st. We booked that date back on November 17th. It was so far away... it was like a light at the end of the tunnel, but it was far enough away to seem like maybe it would never really happen. I guess that's my secret... hoping that it would never really have to happen. This has been such an emotional rollercoaster for the last few months. After 3 years of everything going smoothly, we figured that the possibility of eventual eye removal was just something they have to tell you so they don't get sued.
I know God will take care of us. I know people are praying for us... for peace, for comfort, for God to carry us through this. We had the absolute pleasure yesterday of meeting David and his family. They showed us that it will all be ok. Things will be normal again. A different kind of normal, but our new normal. I KNOW that with my brain. But my heart... it feels like it's breaking into a thousand pieces. I just want to make it all better. Not by having my son's eye surgically removed... I want him to keep it and still be pain-free. When I first told him a few months ago that we were going to have to have his eye taken out so it won't hurt him anymore, he said "Please, Mommy, don't let them take it out. I want to keep my eye, but I want to be able to see out of it!" That's what I want for my son. I haven't lost my mind, I know that isn't going to happen. I know that we will go through with the surgery, his pain will finally be relieved, and we'll get used to caring for him a little differently. It just SUCKS. Can I say that without worrying that people might think I'm not strong enough? I know that in the grand scheme of things, losing an eye isn't a huge deal. It's just an eye, it's only one of his eyes, his condition won't spread to other parts of his body, and it's not life-threatening. But he's my kid. And it sucks. When you're a mother, your whole world is turned upside down. As a mother, you love your children so much that sometimes it physically hurts. You are responsible for this beautiful work of art that God has given you to care for. He does not belong to you, he belongs to God. But God has entrusted you with this precious child, and you are there to love him, protect him, and raise him in a Christian home. And no matter what, you NEVER want to see him hurting. I wish this hadn't happened. But I think I know one reason why it has. It has forced me to lean on God more than I ever have in my life. I have needed God, been on my knees in His presence, talked to God, leaned on Him, collapsed into His loving arms more than ever before. I know God has more purpose in this than bringing me closer to Him, but God amazes me with the way He always gives us that bright side. When things seem like they can't get any worse, He shows us that His hand is always in it. And for that, I'll always be thankful.
In other news, it looks as if Tate's surgery is being moved up. For those of you praying for a cancellation, THANK YOU! I got a call from the hospital this afternoon telling us to prepare for January 12th. I was crying on the phone with the receptionist who called me (they're probably getting used to that by now) but I was relieved to know that my son's pain would be eased a little sooner than we originally thought. I called Todd at work to tell him... he seemed glad to hear the news. I remember saying, "This is good, right?" He said "Yeah, of course." I asked him, "Then why am I crying?" That's when I realized what my secret was. This rollercoaster journey went from surreal to very real in a flash. Hold on tight, it's about to get crazy.
When I heard about a local family who had gone through an enucleation (eye removal) with their young son, I passed my number along so that I could ask them some questions. There is something about being able to sit down and chat with someone who has been through what you're facing that is SO much better than just reading about it on the internet. Kim called me the weekend before Christmas and we talked for over an hour. We decided to get our families together so we could meet her adorable little guy, David. We thought it would be best for Tate to keep it casual by just getting a couple of pizzas and letting the kids play. We were so excited to finally get to meet them tonight!
We showed up with dinner a little after 7 (a little late, since Todd's piece of junk car decided to break down on his way home from work!), and we sat down to eat. The kids were kind of quiet during dinner, but by the time they were finished eating, it was like they were all old friends. They ran off to play while Todd and I chatted with Kim and Rob. David lost his eye from retinoblastoma (cancer) when he was 2. He didn't get his prosthetic eye for several months afterwards because of the chemo and radiation he was undergoing. He is such a sweet boy, and so smart. He told us all about his prosthetic eye. It happened to be cleaning time while we were there, so we got to see how that works. Here are a few of the photos I took tonight:
David takes his eye out by himself.
It was quick!
The prosthetic eye isn't a ball-shape like you see in the cartoons. The underside is concave, so it's more like a really thick contact lens. They're made of acrylic. They're also hand-painted. It's amazing.
Still smiling!
And it's back in! David takes his eye out, but his mom puts it back in for him, with the assistance of some eye ointment and mineral oil to help it go smoothly. What a cutie!
They only take his eye out when it's irritating him, like when he gets an eyelash or something in it. There are telltale signs like redness around his eyelids or David rubbing his eye. (Kim warned us that when David rubs his eye, it will often get turned upside down!) A wash with warm water and Ivory bar soap, and a squirt of eye ointment and a little mineral oil on the back, and it's ready to slide back in. It had been a couple of weeks since they had to take it out last. The general rule is "Don't bother it unless it's bothering you." We looked through some photos of David before and after his surgery. His "before" photos were just pitiful. He had so much pain before his surgery, that he didn't even need pain medications post-op. I wonder how Tate will do.
I felt better than I expected about the whole thing. Everyone was waiting to see how Tate would do, and I was worried about how I would do! We talked a lot about God bringing us through trials, and always giving us enough strength to handle whatever it is that we're dealing with. There have been times that I have just wanted to throw a good old-fashioned temper tantrum and say "This is it, God! This is my limit!", but I know that He will carry me through these times. It's okay to grieve and cry and struggle, but in the end, we will lay it as His feet, and He will pull us through. Only God knows the plans that He has for us, and I know He has big plans for Tate! He has a reason. Jeremiah 29:11 "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."
All of the boys enjoyed meeting David and his family. Jake and Noah weren't afraid to get a super close look at David without his eye in. They both said later that they were surprised that the eye wasn't a ball shape, and that it didn't bother them at all to see David without his eye. I think Jake was more surprised than anyone that it didn't bother him. He was pretty nervous about it beforehand. Tate was really clingy to Todd while David took his eye out. He was facing away, but Kim said she saw him peeking some. I thought it would be best to tell Tate about David ahead of time, and that we'd get to see his super-cool eye, but I think he needs to get more comfortable before he's ready to really watch. We plan to get the kids together again soon to play, and they assured us that they're there anytime Tate decides he's ready to see what it's like to have a prosthetic eye. Tate might have his own before he decides he's ready to see it! :)
I talked to Jake and Noah when we got home, so I could answer any questions they might have. We talked about why David had to have his eye removed, and we talked about the bone growing in the back of Tate's eye. Jake and Noah both have a newfound sympathy for Tate. It might keep them from wrestling around with him so much. For a day or two, anyway. The boys decided that they didn't want to bring Tate's sick eye home from the hospital, that they'd rather donate it to science (um, yeah... good plan!). We prayed for David and Tate, and the boys went to sleep.
As far as Todd's car goes, we'll worry about that tomorrow. We're praying that it's something that isn't too expensive to fix since our funds are pretty much tapped out between having to use our emergency fund to replace our washer and dryer and the medical bills rolling in. When it rains, it pours, but God always provides. Philippians 4:19 And my God will supply all your needs according to His riches in glory in Christ Jesus.
