Tuesday, March 15, 2011

Some News

We're back to Kade again. He had his drain taken out this morning. To say it went smoothly would be a lie, but it could have been worse. Kade knew where we were going and he wasn't happy about it. He's been so bothered by his drain, so I thought maybe he would be excited to take it out. Nope.

He started crying as soon as we pulled into the parking lot, saying he didn't want to go there, while pointing to the door we went in last Sunday when the bulge was aspirated. (I feel like the bulge should have a name. How about.... Timon? I don't know, sure.) I promised him we wouldn't go into the building through that door, we'd go in through another. That calmed him down. We got into the building, he was fine. Excited even, that he got to push buttons on the elevator.

We got into the office and he wasn't pleased, then that was made better by the toys in the office. Then....dun dun duuuunnnn.....we had to go back to the exam room. Mind you, I had one arm occupied by the Goliath of infant car seats and the other by Kade's itty bitty hand. Well, Kade went limp. He did NOT want to go back there. His memories of that office are not his most fond memories. Keep in mind, Goliath is in my left arm....I literally (and yes, I'm using that word correctly) had to drag him into the exam room. All the while he is kicking and screaming. I'm just glad it wasn't a super busy day there. We were the only patients in the office because it was right before lunch.

We did the usual pin him down action, the drain was pulled from Timon's previous residence. Dr. H. was bothered by how much fluid had filled the drain since the surgery. We had dumped, on average, 30ml per day. Dr. H. was hoping for around 15ml the first day and then drops from then on out. Since that was not the case, he became uncertain with what will happen next. He will be contacting a pediatric E.N.T. up at Primary Children's to get a second opinion. We're hoping for no surgery round 3. Timon is not welcome in our home. We're hoping he never comes back.

Until then, Kade continues to be bandaged up, nice and tight. He's so happy to be drain free.

Monday, March 14, 2011

We Still Have Two

So much of this blog lately, has been centered around Kade. You may have forgotten that we have two kids. So here's a reminder.

This is Tadd and he's hilarious!
I can't believe he's almost 5 months. Then, at the same time, I feel like he should be much older already. A LOT has happened since he was born. He's such a happy baby despite his ever-present-photographic-grimace. He smiles and giggles all the time. He loves his brother from a distance. (Kade has a tendency to get too close.) Tadd rolls over from his stomach and is SO close to rolling over from his back. He's a regular laugh riot. This picture of him cracks me up.

Thursday, March 10, 2011

More Pictures

Remember how I said, I wished I'd brought my camera? Well it's true. Super duper true. My camera phone came to the rescue. It's awful quality! Just pretend I'm making a statement with my art, OK? Deal.

We went on a walk to the gift shop, just to get out of the room for a while. Kade preferred to push his IV stand all on his own.

Aaron is the best husband, I'll spare you my gushing over him because I don't want you to feel bad that he's not your husband. But he brought dinner to me from Carrabas, and cake from the cutest cake shop ever called The Chocolate. (Super tasty p.s.) He knew today was going to be a different, less exciting birthday and definitely went out of his way to make sure we could still have fun. This will be one of my most memorable birthdays for sure.
When Aaron showed up with Tadd, Kade immediately insisted Tadd sit by him and watch his movie with him. He gave him a big hug and kiss when Aaron sat him on the bed.

My mom sent me flowers for my birthday and a stuffed dino for Kade for his surgery day. Thank you mom!

My yummy dinner. Chicken Parmigiana and mashed potatoes and salad (not pictured).

I should have taken a picture of the actual cake and not just the box. Oh well. Room service even brought us some vanilla ice-cream to have with the cake. Yum! I feel bad going on because I know how jealous you must be....

Kade got Bambi for me and Aaron got a pair of Vans for me. I love them both. Aaron also wrote me a note that made me weep. I'm blaming it on the exhaustion and stress of the day....

This photo is for Kade's ever-so-curious cousins, Colton and Rylan. They wanted to know just about as much as possible about this fluid, causing problems for their cousin Kade. So boys, here is a picture of it. Kind of weird looking, huh?

He'll have the drain in for a couple of days. Hopefully he'll get a little more used to it and not keep tugging at it.

So Far-So Good

So far, everything is good. Kade is miserable this time which is making it more difficult both emotionally and physically, however, it's also causing him to rest more so that he can heal. I didn't bring my camera today because I figured it would be, basically, the same pictures. Now I'm mad I didn't. Aaron got him a cute balloon. And it's just been (aside from the doctor, hospital, incision site, and room layout) a completely different experience. We're doing well though. Just watching movies and hanging out.

I absolutely love this hospital. Right outside Kade's window, there are horses. He's been watching them run around and he loves it. Kade's doctor is awesome! We love Dr. H. We haven't felt like he is ignoring our concerns or questions even once. He thinks about Kade when he's not meeting with us, he's just great, and has done a wonderful job taking care Kade! The nurses have been so nice today. Some of them even remember Kade from last time. It was only a week ago, but still, it's nice to know that he's not just another patient to them. One of them told me she thought about him for a few days after he left because he was just so cute. Another today, asked him if he wanted a drink, he replied "yes please." She said she's now in love and he can have anything he wants. He's definitely won the nurses over. They also have done such a good job at making sure Aaron and I have been taken care of. I'm rambling, I just feel so blessed to live in a place where we can easily get well taken care of when it comes to our health. I also am so grateful for health insurance!

My food came to me all pretty today. And guess what? It tasted good too! You can choose not to believe that, but it's true. Also, I really am diggin' this "room-service" style meal time in the hospital now.

We really sincerely appreciate all the prayers in our behalf and love that we have felt from friends and family members. We love you all! We're very lucky to have all of you in our lives!

Wednesday, March 9, 2011

The Bulge.

Here are the pictures of his neck. It's pretty bulge-y. The incision is at the top, the line in the middle is just irritation from the bandage he had on the incision. Surgery will for sure be tomorrow. We'll update when we can.

More Surgery

Kade will be having surgery again. There is a lot of fluid build up in the area that he had his surgery last week and it's not going away. The doctor aspirated three syringes of fluid from the area on Sunday and it's just as puffed up and swollen today as it was before he did that. Basically, something is "leaking" and he has to go in and fix it.

The area that is swollen is the area of skin the doctor pulled back to remove the cysts and the fluid is causing his skin to not be able to reattach itself, therefore creating the perfect pocket of space for it to fill....

He'll open the incision up again, drain it, see if he can see what is leaking, put a tissue glue in there to prevent future leaks and sew him back up. It should be a lot faster than his last procedure and then we'll be finished with it. Hopefully.

The doctor is going to do everything possible to do it tomorrow. But for sure they'll be doing it by Monday. It's just a matter of finding an open spot in his surgical schedule.

That's all for now.

Oh also, our internet is down. Yipee. I'm borrowing the hospital's. Good stuff. So there's lots I have to post on this blog and others but wont be able to do it until at least tonight. For example: a picture of Kade's neck. Stay tuned.

Saturday, March 5, 2011

Lumps, No More...Maybe

Kade had the lumps on his neck removed on the 28th of February. It might not be a big deal for some people, to have their child go in for surgery, but for us it was. It's not something that we have to deal with on a regular basis and I was trying my best to not let my nerves get the better of me. We got to the hospital at 7:30 sharp. I was really proud of us because we're not always so great at getting out of the house on time.

They took us to a pre-op room where they'd do a little prepping on Kade before he was taken into surgery. We got him changed into his kid-sized hospital gown (it kind of breaks my heart that they even make them in small sizes), turned on cartoons to distract Kade for a bit and waited for the doctor to come take him back. Kade was doing so good and the whole situation didn't seem to be affecting him too much....until they were about to take him back.

The nurses tucked him into the bed and talked to him (trying to reassure him) about what was going to happen. As they were talking to him, his bottom lip started to frown a little. He was trying very very hard to be tough though and we still didn't see tears. I held his hand and walked with him next to his bed as they rolled him towards the doors only they can pass.

They may as well have ripped my heart out. As they left us to wait, Kade was screaming that he wanted me to hold him. He was absolutely terrified and I couldn't do anything about it. But I just had to keep telling myself, "he'll be less traumatized than I will be." It's now safe to say, that is very true!
We were originally told it would be an hour and he'd be out of surgery. That was not the case. Three hours later, we were very happy to see the doctor coming out to talk to us. He even drew a picture for us.

This is a rough illustration of what was in there. The lines are muscles, the thicker line (if you can make out the caption) is a spinal accessory nerve. The nerve, if damaged, could prevent Kade from being able to shrug his shoulders or turn his head completely. Not life or death, however, it's kind of nice to be able to do those things. This nerve is what cause the procedure to last so long. As you can see, one of the cysts was directly underneath it and the doctor took his time (thankfully) to make sure the nerve stayed undamaged. The cysts used to be called cystic hygroma, but they're now called lymphatic malformations.

Lymphatic malformations are sponge-like collections of abnormal channels and spaces that contain clear fluid. The lymphatic system normally collects excess fluid from the tissues and transports it through a series of small vessels back into the venous system. With a lymphatic malformation, however, transfer of this fluid through these vessels is slowed. The excess fluid accumulates and dilates the vessels, resulting in a swelling of the affected area and sometimes in more extensive enlargement of soft tissues and bones.

After the procedure they wheeled him up to his room. Had he been older, we would have gone home afterward. However, because he's only 3...well almost, they kept him overnight. They also prepared us for when he'd come out of anesthesia. They said he'd probably be crying or throwing a fit of some sort. Luckily, he came out of it without any problem. He just seemed really sleepy and wanted to cuddle a lot. That was okay by me.

His face itched like crazy.
He was treated like a king and loved it. He was waited on hand and foot by the nurses, got to watch Megamind 3 times, and play in their toy room all alone. (I didn't see one single child while we were there aside from Kade, only heard them...so sad.) The most difficult thing we had to do in the hospital was give Kade his pain medication. It's an oral medication and it even smells nasty. It usually took two of us to pin him down, and one to get the medicine into his mouth only to have him spit most of it out. He didn't seem to grasp that if he took it, his neck wouldn't hurt. But by the time we left he was doing much better with it. It just took some bribing with stickers!
I had to take a picture of his glowing toe. He thought it was awesome.
That night, Aunt Cici (Kelsey) and Tadd came to visit him. Kade was very excited to see them both.

We played some more. And then went to bed. (This night, I just have to say, I'm really sad about. My friend went into labor and had her baby and I slept through it. I was supposed to photograph it while Aaron stayed at the hospital with Kade. I'm still really sad I missed it. I'm sorry Janine.)

The next morning bright and early (very early...Kade and I were still sleeping) Dr. H. came in to clear Kade to go home. We slept for a little longer, woke up, ate breakfast while we waited for Aaron to come back from work, and then got ready to leave. Aaron and Kade played in the play room while I packed everything up. He had to get one last play in. He didn't want to leave. The nurse told him he could bring a car home with him and he thought that was okay. It at least got him in the wagon and leaving. He would only get in it though if I was pulling it. He thought the nurse was going to take him from us again. So sad. We eventually got out of there though. Thank goodness!

When we got into the car it took some coaxing, again, to get him to leave. He waited to throw his aforementioned fits until we were leaving. Better late than never? No. Never would have been better. Oh well, he's 2.

After Kade came home, everything was fantastic. You would never have suspected he'd just had surgery. He didn't seem affected, still. He was taking his medicine fantastically, everything was great. He hasn't even needed pain medication for the past two days. Until yesterday. He's started complaining more. Yesterday it looked a little puffy but still not anything I was worried about. Today, different story. This morning I looked at his neck and it was SO swollen. I was worried enough to call the doctor. So I did. After explaining what was happening, he asked us to meet him at his office. Part of me felt horrible for dragging the doctor out on a Sunday (in his suit and all) and the other part of me felt very grateful to have a doctor that didn't just blow us off until Kade's follow up appointment on Tuesday.

Once the doctor looked at it, he seemed less worried but still wants us to watch it. He aspirated it (three syringes full of fluid) and wrapped up his neck nice and tight to keep pressure on the area. If it comes back, we're looking at another surgery. Hopefully it doesn't come back!!! I don't want to do this again.

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