I hope you all had a wonderful Christmas with your family. We did. It was different that Christmases past, but it was still good. The girls were spoiled by Santa and grandparents alike….and so were we. We did a lot, saw a lot, ate a lot. It was good.

I’ve received a few emails and requests for updates on Chad. I really haven’t known what to say in the last few days, so I haven’t said much of anything.
For some reason, there has been a change in the last few days.
It started with Christmas day. He was in bed nearly all day — only up for 30-45 minute increments to visit with his parents, see what Santa brought the girls and the grab a bite to eat.
The day after Christmas, he had two seizures. Very simple, very mild — but they happened. He hasn’t had one since October, so it threw us for a loop. I was quite frazzled, until Chad remembered that he had forgotten his medicine that morning.
He forgot it the next morning.
And the next.
And the next.
Luckily, I am here to remind him and we now know that I need to stay on top if his medications again.

This morning, I told him to take his meds a few times, and he reluctantly got out of bed to do so. While I looked into his daily  medicine box, I noticed it looked a little light. He hasn’t been taking his second seizure medication. I restocked it, but I have no idea how long he has gone without it.
He was handling his medicines so well; but I now have to take that duty back.
He is mad at himself for not being to remember, and even told me that he feels like he is losing his mind. He probably is, very slowly, and I think that makes him even angrier.

He still is miserable; even more so in the last few days.
He has absolutely no appetite and I have to remind him (beg, really) to eat. He has lost about quite a bit of weight in the last two weeks.
He has been in bed a little more than “normal” and I’ve noticed he looks a bit gaunt in the last few days. He has deep circles under his eyes; which I wouldn’t expect with the amount of sleep he gets. Then again, I don’t think he gets any quality sleep which probably accounts for his appearance and mood lately.

I have been calling Dr. T’s office for the last two days to get Chad in as quickly as possible. Originally, Chad wasn’t slated to go back for a check up until the end of January. But we cannot wait that long. As of right now, the earliest they can see us is Monday, January 4. I would like him to be seen this week so they can get him comfortable NOW, but we will have to wait. Dr. T is out of town and we really do prefer to see him since we have such a long history with him and we feel comfortable with his suggestions.

As much as it pains me to say it, I seriously doubt that Chad will be returning to work. He is in bed around 16 hours a day, if not more. I should have started disability paperwork a long time ago; but he always seemed to get better just as I started the process. This time, I’ll complete it and get it done. I still hold out hope that he’ll get better, but the paperwork needs to be done regardless.

He does talk some, which is great. But he often starts a sentence and can’t finish it. He just loses his train of thought and nothing brings it back. When he chooses to take a phone call, he puts in on speaker so I can help him with the conversation if needed.

We are now looking at pain management — unless, of course, Dr. T wants to piddle around with adjusting the shunts. At this point though, I don’t think Chad or I want to go through that whole process. When speaking with the PA yesterday, he indicated the headaches and pain were probably not shunt-related because he had no other “typical” shunt-related symptoms. We may still try it though. It all depends on what Dr. T recommends and what Chad feels comfortable trying.

We have missed visits from many of our friends this week; friends that have come to NC from far, far away. Chad & I always look forward to the week after Christmas because it gives us a chance to slow down and catch up with so many people that we miss! I was quite disappointed that we haven’t been able to see any of them this year. Chad is just not up to it, and I appreciate their understanding. We miss all of you! Hopefully, he will feel better when you venture out this way again.

I am looking forward to putting this year behind us. Nothing has really turned out the way we hoped it would, and I hope that the New Year brings us some better times.
The girls are doing great, and are ready to go back to school! They love school and miss all of their friends.
I am hanging in there. I am ready for Summer to come back. Or even Spring. I’m ready for some S-U-N.

I am going to try my best to update on a daily basis, even if there is nothing real to report. Sometimes I just can’t update, so don’t hold it against me if I can’t. I am also trying to make it easier for me to blog, and you may notice a change in the blog format. I know I promised I wouldn’t do that again, but I feel the need to streamline and I think it’s long overdue here.

We wish you a peaceful, restful, healthy New Year!

We ate so much delicious food and talked – it was a great diversion from our monotonous routine of doing nothing at home!

The girls are certainly getting excited for Santa tomorrow evening. Before I know it, my living room will be dismantled into a huge cave of shredded wrapping paper, discarded bows and name tags — and too many toys to list.

I didn’t get all of my Christmas cards out this year, and I apologize. If you want one, I will send you one – gladly! Please just leave your name in the comments.
For those of you who just wanted to see it, here is  — minus the black part on the right.

Have a very Merry Christmas, and best wished for a healthy, prosperous New Year!

Chad, Skye, Carys & Cailyn

He’s spent quite a bit of time in bed over the last few days. Yesterday, the girls came home from a weekend away, and he’s been up more since their arrival. We’re (all the girls in the house) trying to stay quiet for his sake, but you can imagine how difficult that is as Christmas looms near.

By the way, a HUGE Thank You to Nana, Shannon & Todd for letting the girls hang out with you all this weekend so Chad & I could get some rest. It was just what we needed!

On Saturday, he was out of bed for a total of 4 hours. Four.
On Sunday, he was up for about six.
On Monday, the girls came home and he was up nearly 8 hours.
And today he joined us to do a little shopping – just to get out of the house. So far, he was up for about 5 hours today. He’s in bed now though, and I hope I didn’t tire him out too much!

His head still hurts. Badly.
He is talking a bit more, which I was “confusing” for him feeling better. He warned me not to do that – because he’s certainly not feeling any better.
That’s not what I wanted to hear!

He is starting to feel less sore from the surgery itself, so I guess we will soon know what we’re left with — pain-wise.
Many people have asked us how confident Dr. T was with this new shunt relieving all the pressure and headaches Chad was having….Well, let’s just say Dr. T was confident it would help. And we had to sign a waiver pre-surgery stating that we understood the new shunt may or may not relieve Chad’s intense headaches.
So far, it’s not helping.
However, we may just need to adjust the settings on the shunt. And that may take some time to find the right setting that provides a healthy balance between diverting spinal fluid, relieving headaches, and reducing fatigue.

I was really hoping we would feel better by Christmas and we all could have the best gift imaginable this year.
I don’t think that’s going to happen, necessarily. But we do have the gift of knowing that we tried everything available to us. And that’s a pretty good feeling, too.

We got home around 8:00 last night. We were exhausted.
Please excuse my lack of updates. Once he was discharged, it was a whirlwind. We had to wait over an hour for transport (wheelchair), which put us driving through Winston-Salem traffic right at the peak of rush hour traffic. We pulled over to eat/wait out the traffic and we made pretty good time after that.

We slept well last night. At least I did. Chad was in and out of sleep.
He awoke at 11:45 this morning, only to say that his head was killing him.

The girls are excited to have us home.
And I am thrilled to be home in my own bed.
I just really hope his decision to come home a day earlier than planned wasn’t hastily made.
We will see.

Chad says his head hurts less today, but the other pains all over his body (suture sites and routing of the tubing) is pretty intense. On a scale of 1-10, he says his head is a 3; the rest of his body is a 10.
Stinks.

He’s been up, walking around the room. But he hasn’t ventured outside the room yet. The dilaudid makes him a bit wobbly and sleepy, so he’s been in bed or sitting in a chair for most of the time.

He is really itchy — and we suspect it’s the dilaudid (because it seems to occur shortly after it’s introduced through his IV). He’s not breaking out in hives, but continually scratches and rubs his legs, feet and back. I keep checking him for little bumps or hives, but don’t see any. Very strange.

He’s been eating well and I bet that has helped him feel a bit better.

The nurse checked his incision sites this morning and said they look excellent. He’s been off blood thinners for a little over a week, so he hasn’t had a problem with excessive bleeding from the wounds.
But, he also has developed some bruises on his calves. That worries me, given his history with blood clots in his legs and lungs.

All in all, he is having a decent morning. I hope he continues to feel better as the day progresses.
And I really hope that the pain monster doesn’t rear it’s ugly head again today now that dilaudid is off Chad’s drug cocktail menu.

Thank you, as always, for your support, concern, prayers and encouragement.

Check back for updates throughout the day.
Thank you for your support & encouragement!

8:25am – Chad was taken back to the operating room. He was in pretty good spirits, even though we both slept terribly last night. I should hear an update from the OR nurse shortly.

9:45am – Still haven’t heard anything….

10:20am – They OR nurse just called to say the surgery JUST started…I thought they would be done by now. Another 3 hours before he’s in recovery….

11:45am – I just spoke with Dr. Tatter. He said the surgery went well and there were no complications relating to the previous shunt insertion. (They thought there may be a fluid accumulation in his left lung cavity). Chad is in recovery & said to be doing well. He should be moved up to the Neurology floor within an hour or so.
SO glad the hardest part is over (the waiting game). Now, it’s time to see if this surgery actually helped!

12:45pm – Just got into the room on the Neuro floor. He looks good. He says he’s extremely sore. He has three incision sites and is complaining of a nasty little headache (says it’s a 4 out 10 on the scale). They offered Vicodin, he declined because it doesn’t work for him. Says he’ll tough it out.

3:45pm – Chad is not having a very pleasant recovery after all. He is in severe pain. He has had two whopping doses of morphine since he got to the room, and then a monster dose in the recovery room earlier. He says he feels worse, actually.
They are bringing a tiny dose of dilaudid. This is about 10 times stronger than morphine, so they are being very cautious. He says the pain is a 9 on a scale of 1-10. He told me he has never felt this terrible in his life. So sad.

4:00pm – Chad is asleep. He’s had a lot of pain medication in the last 45 minutes. Let’s hope the pain is actually better and he’s not just in a narcotic-induced sleep.

4:15pm – Scratch that. He’s not asleep. His eyes were just closed because he is tired, but can’t sleep. Says the pain is the same. All of these meds are liquids, introduced directly through his IV, so he should feel a tiny bit better by now. They cannot give him much more because it will make him sick. Waiting on another plan…

5:20pm – I just spoke to the doctor in the hall. They are switching him to dilaudid exclusively. Not sure why since it didn’t work earlier…maybe a higher dose will be more effective.

6:20pm – They gave Chad a pretty hefty dose of dilaudid about 30 minutes ago. He said it took the edge off, but now it’s creeping back full-force. He’s finally been given a meal tray, so hopefully he’ll feel a little better with some food in his system.

6:35pm – They just took him down for a CT scan and x-rays. They are looking for internal bleeding and checking the shunt tubing, etc. Poor guy – he had just gotten situated to eat dinner & then they whisk him away. He is starving!

7:35pm – He’s back from CT. He got very nauseous on the way there & the way back. He needs to eat something, but he doesn’t think he can keep it down.

8:00pm – He’s trying some applesauce. I had them order Kytril for his nausea – I know that works from our previous experiences with nausea. Let’s hope he can keep something down so he can get some vicodin (which I don’t think will help, but we’ll try)

9:00pm – Finally got Chad to feel a little more comfortable. They gave him a combo of Vicodin with Dilaudid, a Kytril drip for the nausea. I had to insist on the Kytril — only because we know it’s the only anti-nausea drug that worked during radiation/chemo. He’s “resting” in little spurts.

Carys ran into the kitchen, terrified that Daddy was shaving all of his hair off. She was panicked – like he had lost his mind or something. I gently reminded her that Chad was having surgery again this week and wanted to have a nice haircut for the doctors. She walked back into the bathroom and supervised the haircut. I think she was pleased with the final result. She deemed him “the handsomest daddy in the whole world!”
Cailyn, on the other hand, with her diva-like attitude, declared that Daddy looks like a baby now, and everyone ould laugh at him. Then I gently reminded her that she looked like a baby too before her hair started to grow. I guess that wasn’t fair – because she was actually a baby. We had a little game of “uh-huh“, “nuh-uh” going until she finally realized she should give up. Mama always wins.

When Chad had his first shunt put in around May, we were unaware that they wouldn’t shave his entire head. He had a reverse mohawk. And he wasn’t pleased. So, he did the dirty work himself this time around.

I had taken better pictures of his new ‘do last night, but they are on my other camera (the camera that I refuse to bring to lug around the hospital because it’s so big!). So, here he is, in all his semi-bald beauty. I know, he looks thrilled. I was distracting him from television, so this is the look I got…

We got here at noon today and were escorted to our room in the day hospital around 1pm.
Chad went down for a CT Scan and x-rays and I ran to get some snacks while he was gone.
We then feasted on a lovely room service-esque dinner that tasted far better than it should have. We were hungry, so that’s no surprise.

Still no word on his surgery time for tomorrow. It will be our luck that it’s first thing in the morning and we have to be up & ready to go at 6am. Not fun!

Oh, and did I mention that my sweet little darling children decided to share a cold with me? It seems they always share their little germs with me right before we come to the hospital. Every. Darn. Time.

That’s all I have to share for now. Chad is going to take a nap and I’m going to roam the halls.

You see the beauty and specialness in everything, which is a blessing to all of us.
There is something in your big blue eyes that makes me believe you are going to help so, so many people. You are so caring,  sweet, loving – there are just not enough words to describe the sympathy you show for others at such a young age. You are a special, special girl.

This year has been a year of great change. You started kindergarten and promptly told me you wanted to stay home with me forever. It was an enormous change for you, but like you always do, you found the bright side. We fashioned a little memento for you to take to school every day to help calm you — a key chain with photos of all of us. That precious key chain still hangs proudly on your backpack.

You still sleep with Baby. That poor, tattered, pink doll has been the recipient of so many hugs and cuddles from you for six years. When I see you tightly grip her at night, it reminds me that you’re not quite as grown as you act. You are still a little girl, although not as little as you were yesterday.
You seem to learn so many new things now that you’re in school and we often struggle to keep up with the conversations you create. You have quite the imagination and I love hearing your silly jokes, stories and daily recaps from the classroom.

You lost your first tooth this year, and then another. And yet another three are barely hanging on. It’s hard to believe it’s time for toothlessness. It seems like yesterday when I was praying your teeth would come in so you could eat some thing more substantial that mashed baby foods. I’m finding both stages of your toothless grin to be quite adorable.

You are still best friends with the other little lady of the Lanford house. The two of you bicker and quarrel, but it’s always short-lived. I love the little moments when you think I’m not watching and you help your sister, read her a story or play something with that you really don’t want to play. You do it for her with a smile and it’s a beautiful bond you two share.

You’ve started reading in the last few weeks, which just blows me away. We read almost every night, until my lips and mouth get dry. And then, maybe, just one more book. You come back from the library with books about animals — which is no surprise. We would have a zoo in the backyard if we would let you.

This year has been absolutely wonderful, Care Bear. You are a sweet, smart, loving little lady and I could not love you more. I hope this next year brings you even more joy, happiness and opportunities to grow and learn.

Happy, happy birthday my sweet girl.
I love you!

Mommy

As we suspected, Dr. Tatter gave us two surgical options.

#1: Insert a second shunt
This shunt will be solely responsible for draining the right ventricle.
Chad has had this surgery – it was fairly easy on him. And this time, we have plenty of notice to stop his blood thinners before his surgery.

#2: Fenestration of the Septum Pellucidum
This is a more invasive surgical procedure that may (or may not) solve the problem. It’s more invasive and the surgical team would make a hole (or several) in the mesh-like membrane that separates the ventricles. It could be a long term fix without further need for a shunt. But, there are risks involved when removing any part of the brain. We, Dr. Tatter included, just don’t want to take those risks. And there is a very good chance that the holes Dr. T creates could close up by way of scar tissue – and then we’d be right back where we started.

Calculating the risks and positive and negative outcomes of each wasn’t very hard for us this time around.
If you remember, Chad was pretty verbal about no more surgeries, no more treatments.
Well. Never say never.
Chad is getting a second shunt.
And it’s happening soon, although not as soon as he other surgeries have occurred over the last few months.
Chad will be admitted on Tuesday, December 15 at 1pm. And then he’ll be in surgery on Wednesday, December 16. If all goes as planned, we hope to be discharge on Friday, December 19.

On Tuesday of that week, Chad has a few tests that will need to be conducted — a CT of his chest and head. Since he had so many issues with the shunt tubing in his abdomen, it’s a given that this new shunt will be directed to his lung cavity. He has had no abdominal pain since the shunt was redirected to his pleural cavity – which is wonderful!
They just need to make sure there isn’t a large amount of fluid collected in his left lung cavity prior to surgery. If there is, they would need to revise the whole surgical plan. We’re not going to think about that — because everything will be FINE. Right? Right!

So why are we waiting so long?
December is a crazy month. I have a lot going on with cakes & pictures — and Carys is turning six next week, and her birthday has been planned for December 13. We decided it would be best to go about our lives,  and plan the surgery during the girls’ last week of school. They will be distracted with the holiday goings-on at their schools, and it should make it a little easier for them.
I feel bad that he has to wait two more weeks, but we’re holding out hope that he will feel better for Christmas.
And that’s the best present I can imagine!

So, what happens if the shunt doesn’t work?
I’ll be honest. We’ve exhausted our options.
Chad has done chemo, a tumor resection, more chemo, radiation, a shunt…and there’s not much more to try. Right now, anyway. If this second shunt does not help relieve the pressure and crippling headaches, we will be looking at permanent pain management. That’s not something to take lightly and it’s not something that either of us want to consider right now. We’ll just cross that bridge when we get to it – which will be a long time from now, hopefully!

This month is extremely busy for us, so I’m not sure how much I’ll be updating. I will update while we are in Winston-Salem, but maybe not much before then. Happy Holidays!