Another one bites the dust

The plague has claimed another victim. Our nurse, Debi, joined the ranks of the fallen. So I was nurseless again today. Luckily I had my sister in the morning and my mom in the afternoon, so we made it through the day unscathed. And I'm finally feeling pretty much back to normal, so that helped. Matt's mom is staying with Will tonight, and I'm sure that will help us both get a good night's sleep. She's a nurse, so we feel confidant that he's in good hands!
Poor Hays has been kind of under the weather as well. i don't think he has a full blown virus, but he's been blowing out diapers left and right, and I can tell his tummy is hurting. Poor little guy. Now the question is, can Will remain untouched by the virus of doom??????
We're still working on getting a night nurse, but we found out it will take at least a month before we get word on that. Government red tape- it's so much fun. We're trying to rearrange our hours in the meantime, but we don't know if we're going to be able to do that either. The hitch there is the way the order for nursing care is written. It's written as 12 hours a day rather than 84 hours a week. If it were broken down by week, we could distribute it any way we wanted to, but that may not be the case with the current orders. More government red tape. So we'll see what happens.

Happy Birthday, Mom!!!!!!!!!!

We're slowly, but surely getting better. Mason was almost his regular self today. Which, if you know Mason and his crazy energy level, is both a blessing and a curse! I'm still pretty worn down but I'm able to function, which is a whole lot better than a couple of days ago. Hopefully things are moving in the right direction as far as getting a night nurse goes. The home health care company is coming tomorrow to fill out some paperwork to submit the request for more hours. Pray that it happens quickly! My parents have been helping us out a lot (more than anyone should have to) but we're all going to wear down quickly if we can't get some help at night.
And everyone please send my mom happy birthday vibes. This wasn't the most thrilling birthday she's ever had, and we certainly didn't get to celebrate it in the fashion she deserves. But I can say with absolute certainty that there is not a better mother out there. She has been there through all of this, and without her support I could not possibly have made it through. She is absolutely selfless and she has more patience than anyone on the face of this earth. She gave my sisters and me a phenomenal childhood, and every day she guides me and helps me to be a better mother to my children. If I can be half the mother she is, I will consider myself a success.

The Plague

You might have been wondering where we were the past couple of days. Well, our household has been hit with the plague. There has been some kind of nasty stomach virus going around and Mason had it Thursday, was fine Friday, then got much worse Saturday and Sunday. It hit me Saturday afternoon, and Matt finally succumbed Sunday night. Needless to say, things have been pretty rough around here. I'm feeling better and Mason seems to be improving. Matt's still the walking dead, but slightly more animated than he was earlier in the day.
To make things even more fun, we're down to just daytime nurse care, so we're on our own at night. We're trying to get some night hours back because we really need them. Will's just too little to be alone at night, and I have to sleep sometime. So everyone please pray that we get that worked out quickly. And please pray that the babies don't get hit with the virus from hell. So far, they're the only members of the household still standing (knock wood).

Today went pretty smoothly. It was busy, but not incredibly hard. My nurse that I LOVE was here today and that made it fun. I feel like I'm finally really getting a handle on Will's care and it's becoming routine. I feel pretty confidant that I can do what he needs and that I know what he needs. I'm still learning, but it gets better every day.
Today I had the kids all by myself this morning between the time Matt went to work and my nurse, Debi, came. Since Hays was sleeping I did Will's bath and then did his trach care all by myself! I've always had to have someone else hold the trach in while I did the cleaning, but I figured out today that it's actually easier to do it by myself.
One of the best parts of the day was sitting on the floor playing with the twins. They were both so cute and so happy and it was just such a normal thing to do. I told Debi, this is what I've been waiting for. I feel like we're really starting to settle in and funtion like a normal family, albeit one with medical equipment and a nurse!
Our afternoon was lots of fun because my friends came over with their kids for our "three martini playdate." Mason and the other kids had a great time playing with the other kids and all the mommies got to sit around and have cocktails and hold babies and gossip. It was just what i needed. One more day down, only 18 years to go!

Our first family picture!


Looking at the mobile together


Brotherly love, or perhaps Hays is just trying to eat Will's face!

And the hits just keep on coming- Mason started the day off by throwing up all over the couch. This occured while I was spending the morning at the Social Security office trying to get Will's SSI in order. That was a big pain in the butt, after which I discovered a parking ticket that I got because my brain was to fuzzy to remember to bring change for the meter!
Mason felt better after his little incident, but Hays was pretty pitiful today with the teething. Hopefully that will be over soon. I got to spend the afternoon trying to clean the puke smell out of the couch cushions, which required me to wash the cushion covers with Ivory soap in the bathtub and clean the cushions with vinegar and water followed by baking soda. It was a pain, but the cushions look great and no longer smell gross, so mission accomplished I guess.
Other than the grossness, it wasn't a bad day. Hays and Will are starting to get a little more interested in each other and we're starting to (sort of) get a routine. We're not there yet, but things run a little more smoothly every day. The best thing is being able to spend time with all of my kids together, It is wonderful to sit there with the three of them and marvel at the fact that our family is finally complete.

well, I know it's tough to tell them apart, but that's Will on the left and Hays on the right! Today was a much better day. Our nurse was a really nice guy. He was very knowledgeable and sweet to Will. He was attentive and played with him a good bit. I'm glad he'll be back tomorrow. My sister, Elizabeth, also came to help all day. I have found that three adults for three children works well! It was a hectic day, but not in a bad way. It just seems like every time we turned around there was a kid that needed something. But it was a sight of a lot better than yesterday. We have a night nurse coming tonight, so that will be good. My mom was a huge help last night, but we both had to do a lot of getting up. Maybe tonight everyone will get to sleep. (Except the nurse!)
In other exciting news, Hays is cutting a tooth. It's not out yet, but he's drooling like crazy and I can feel it under the gum. He's a little cranky, but it's not unbearable. He's going to look pretty silly when that thing does emerge. He'll look like a newborn with a tooth!

Oh lord, the craziness abounds. Sorry I didn't get a chance to post yesterday to let everyone know that Will is home!!!!!!!!!!!! He got home late yesterday afternoon. He was pretty overwhelmed at first, but he calmed down quickly and was his smiley self. We had a great nurse during the day who really helped us. Our night nurse- eh, not so much. Sje was nice and seemed to know what she was doing, but every time I went in to check on him, she was asleep! One of his feedings was a half our late because she slept through it. Not cool. Then our nurse this morning was no great shakes either. She knew nothing about Will's equipment and didn't seem to be all that knowledgeable about kids with trachs. But she was at least another pair of hands- until she started throwing up. Yup, puking her guts out, over and over. So, I sent her home and the home health agency began trying to find us a replacement nurse for today and tonight. We finally got a day nurse who was really good. Unfortunately, we have no night nurse. SEcond night home and we're on our own. My mom is staying the night to be my helper. Matt sleeps so soundly, he's pretty much worthless at night! As an added bit of fun, severe thunderstorms are on their way, so maybe we'll lose power too. Wouldn't that be fun? Oh well, if we can make it through this, we can make it through anything. My sister advised me to think of it in the immortal words of the Grateful Dead, "The first days are the hardest days, don't you worry anymore. Cause when life looks like easy street, there is danger at your door." Let's hope the first days are the hardest, otherwise I'm running away from home now! I promise I'll post pictures tomorrow of the twin reunion. They weren't all that impressed with each other, but it was still cute.

We're still just waiting to see if everything is a go for tomorrow. Our case manager told us that we had the option of either driving him home ourselves or bringing him home by ambulance. We were planning to bring him ourselves until we found out that the hospital requires you to use ambulance transport for the first trip home. Unfortunately, that means we have to wait for insurance approval for the transport. We won't know until tomorrow if the insurance approval came through or not. Keep your fingers, toes, eyes, etc. crossed that we can finally get our boy home!!!!!!!!!!!

We finally got to meet Will's new (and final) doctor today. He's very nice and seems to have a good plan for Will. We have been running around like chickens with our heads cut off trying to get everything in order. WE were missing several things off our supply list from the home health company so we had to get all that in order. Then I had to go get tons of little storage bins for all his supplies. We need to keep it organized and one of the home health nurses had suggested using the plastic storage drawers so we can label them and always know exactly where everything is. So now we have a whole little organized hospital in our house!
we had a very awesome, exciting experience with Will. We put him on his HME, disconnected him from everything, and finally got to pick up a baby that was not attached to anything! We took him on a walk around the TICU and he was amazed. Seriously, his eyes werer HUGE! That poor guy has never been out of his room other than being transported to surgery, so this was a big deal. And it was so incredible to just hold him and carry him around like a normal baby. He just gets better and stronger every day and I get more and more encouraged about his ability to lead a pretty normal life over the next couple of years.

The ball is definitely rolling to get Will home. It was a busy day here. I met the two nurses that will be our primary day nurses and really liked them both. They were both very sweet and down to earth. One is kind of rock-n-roll with tatoos, pierced nose, and bright red streaks in her hair. the other one is a mom of four young kids and seems to be very experienced. She actually used to work at Egleston and sometimes worked in the TICU. I feel much better about having someone in my house all the time after actually meeting them. I think we'll all get along really well and it will be nice to have another adult around.
We also got all of his supplies, some of his equipment, and his oxygen in case of emergencies. So I now have a big oxygen tank and two big boxes filled with medical supplies. It's not too horrifying- I was afraid it would be much worse. My project for this weekend is getting everything organized and put away.
Will's doing well today. He got his immunizations, so his legs are a little sore, but other than that, he's great. He tried the heat and moisture exchange valve (HME) for the first time and did great. His oxygen sats dropped a little when they first put it on him, but then they went right back up. He wore it for an hour today and they'll increase the time tomorrow. This means he'll be fully mobile and unencumbered when he's wearing the HME. I can't wait to pick him up and carry him around without him being attached to anything! Matt's staying at the hospital with him tonight and I'm going up early tomorrow so we can meet with his doctor and get training with the g-tube nurse. Just a couple more days!!!!!!!!!!

Hey, dude!


Hittin' the waves with Daddy and Grandaddy


YaYa and Hays




Mason and Spencer being cool dudes


Crazy little monkey!


Chillin' on the beach


Mason at the playground


Mr. Rodney, Grandaddy, and Matt


Mommy and (most of) her boys


Beach Bum!!

Mason and Daddy

Daddy and Hays

So, as promised, here are lots of beach pictures. I have many more, but these were some of the cutest. Mason hated the trip there and back and complained most of the way. Can't say that I blame him- five hours in the car is a long time. Luckily, Hays slept most of both trips.
We had a very cool condo right in the village area of St. Simons. The first day my friend, Kelly, and her little girl came to hang out. Mason had a big time with her daughter, who is five. He followed her around and about drove her crazy, but he had fun.
The weather was seriously perfect. It was sunny and beautiful, but there was a great breeze. Hays loved it except in the afternoon when it got really breezy. Then we had to bundle him up to keep the wind off of him. Mason loved the ocean, the pool, the sand, and his buddy, Spencer. Spencer is my mom's best friend's son and he's 11. Mason was convinced that Spencer could not possibly be a kid, because he was "huge." So Mason just thought he was a super-cool grownup!
The kids behaved for the most part when we were out at dinner each night. We had to threaten Mason a couple of times, but he was good overall. The last night we wound up eating in a bar! We didn't realize it was a bar- we were going on someone's recommendation. But it turned out to have the shortest wait and the best food of anyplace we went! Plus, it had a stage with a beach mural painted behind it, so we used that for lots of photo ops!
Matt and I were sad to come back, but Mason wasn't. He missed his house, his pets and his bed. He keeps telling us that he never wants to go to the beach again because it takes too long to get there!
And finally, for the funny Mason comment of the day- He's now in to Transformers, so Matt bought him one today. He got Optimus Prime, but Mason calls him "Octopus Crime." What can I say, he's hilarious!

We're back from the beach. We had a fun trip. The weather was absolutely perfect, Mason had a ball and Hays was amazingly good. I have cute pictures and stories that I'll post tomorrow. Tonight I'm trying all the laundry from the trip done- I think I'm on load four!
There are also some new things going on with Will. A new pulmonologist has come on rounds at the hospital. We haven't seen him before, but he's aparently the top dog pulmonologist up there. He took Will off of CPAP because he said he doesn't think Will needs the pressure support and having it could keep the weak spot in his trachea from strengthening. He's extending his trach collar trials by a half hour every day with the goal of having him on the heat/moisture exchange valve (a little filter thing that fits on the end of the trach. It catches the moisture in the air he breathes out and humidifies the air he breathes in) during the day and just on the vent at night. With the valve, he's not hooked up to anything at all, so he would be able to move and crawl and walk with no issues or delays. I have to talk to the doctor tomorrow and get more information, but it sounds promising.

Holiday Road

The bags are packed and ready to be loaded. We are off to the beach tomorrow!! It will take us about five (long) hours to get down there, so we're hoping to be on the beach by midafternoon. It's going to be something else trying to get two kids ready and on the road tomorrow morning!
I went to see Will today and he's back to his adorable, smiley self. His G-tube sight looks great, they're giving him formula through it and he's tolerating it fine. He's also back on his bottle feeds and doing well with those. He's just such a sweet, happy little guy. I can't wait to have him home!!!! Still nervous, but so ready. Only ten days left!

Whew, it's been a long couple of days. Will had his G-tube put in yesterday and he got circumcised (awful, I know, but we figure it's better to have that done when you're under anesthesia and they give you morphine afterwards!) He had a kind of rough night last night, but he was doing really well today. Not exactly his usual sunny self, but relatively comfortable and content. Matt and I did a trach change all by ourselves and he was perfectly happy all through that.
We had our discharge meeting this morning, and it looks like everything is in place. Poor Matt is not thrilled that they asked him to stay another night before Will comes home! He just hasn't spent as much time as I have up there because he has to do a little thing called work, so they want him to get in another long stretch so that he feels really comfortable with Will's care. We also had ventilator training so we'll know how to set the ventilator, what all the alarms mean, etc. It was a lot to take in, but I think we'll be okay.
Tomorrow the guy from the home health company is coming to check out Will's space and to go over everything we need to know about the vent. It's slightly different from the one at the hospital, but it's basically the same. One more thing down, 7 bazillion to go!!!!!!!

Thanks, Wal-Mart

Tomorow Will undergoes his third surgery. I know it's a relatively minor procedure, but we're still not thrilled about it. I hate knowing that we're fixing to do one more thing that's going to cause him pain and discomfort. Luckily, the pain shouldn't last long and he'll be back to his sweet, smiley self in no time. And Matt's spending the night with him tomorrow. I'm glad he'll have his daddy to hold him if he's hurting.


It looks like we've got everything in order with the home health care and nursing folks. We've got a discharge meeting set up Wednesday at the hospital, and the home health people are coming out to the house on Thursday. I'm anxious to have all the supplies and equipment in place.

I spent most of the day running around trying to get us ready to go to the beach. We had to make a Target run and I was looking for small toys for Mason for the car ride down. He's really in to superheros right now, so I was looking for a Superman action figure. He has Batman and Spiderman, but no Superman. Alas, poor Superman does not have a current movie, so you can't find him on the shelves. I settled for knock-off GI Joes at Wal-Mart. I didn't look at them all that closely until I got them home. But I realized upon further inspection that these guys had quite the arsenal. There were seven guys and 11 guns! And I'm talking big guns, not little pistols. It was a bit excessive for a toy marketed to children three and up!






The wanna-be GI Joes and their crazy arsenal!!

Will weighs 11.2 pounds- he's huge!!!!! Poor Hays, he still hasn't topped seven. I guess he's always going to be our scrawny little chicken. Paige went with me to the NICU and she told him, "Will, you're huge, you could eat Hays!" But he was very cute and sweet today. I met with one of the resident surgeons about the gastric tube procedure. I'm still not 100% sure that we're doing the right thing, but every doctor and nurse that I've talked has said go with the g-tube. I have to trust their advice, but it's hard. I'm just so afraid of putting him through another surgical procedure for no reason. But it's better than bringing him home and then having to turn around a couple of weeks later and having to put him back in the hospital to get the g-tube. At this point, we just need to do whatever it takes to get that boy home. My goal for this week is to get everything in order with home health care and the home nursing company so that we can go to the beach and come back ready for his homecoming. It's going to be a busy week and we're going to be ready to just sit on the beach for a couple of days after it's all said and done.

I hope everyone had a fun 4th. We had a great time at a pool party thrown by one of the girls I met at the girl's night out with Jessica and the NICU nurses. It was a fun party and a couple of our beloved nurses were there and were fully impressed by Hays. Mason was completely taken with my friend, Susan's son, Noah and he followed him around the whole day. Unfortunately, that included following Noah into the pool when he wasn't wearing his swimmies. He found out pretty quickly that that wasn't such a great idea. I thought he would be scared, but he was mostly just mad that he couldn't swim like Noah!
We found out that the surgeons are planning to do Will's G-tube on Tuesday. That's good because it gives him a chance to heal almost completely before we head to the beach. They had to move Will to another room on the floor since his bathroom flooded. I don't know if they'll keep him in this room or move him back. Matt went down to see him today and he said Will was happy and doing well. There was some sort of malfunction with his ventilator. It kept alarming that something was disconnected when it wasn't, so hopefully they got that fixed. I'm going down tomorrow and I'll talk to the surgeons to ask them a few questions about the g-tube procedure. I just want to make absolutely, 100% sure that this is the right choice for Will.

Still no word on whether the g-tube is a go or not. The doctor was trying to get the surgical team in for an evaluation today, but that didn't happen. I'm guessing it won't happen tomorrow either since the surgeons will likely be celebrating the 4th, so I assume it will be the beginning of next week. I'm hoping it happens soon. We're supposed to go to the beach next Saturday (the doctors decided that it would be a good thing for us to go and get a little break before we bring Will home and up our crazy factor by at least 50%! They're planning to send him home on the 21st if there are no complications) So we'll need him to have the surgery towards the beginning of the week so we'll have plenty of time to make sure no complications arise. It's a pretty simple procedure, but problems are always a possibility.
Egleston seems to be having mechanical problems today- Will's bathroom was flooded! My mom went to see him today and she said his floor was covered with about two inches of water! Unbelievable. I swear, it's a good hospital for the most part, but some things make me crazy. Like some of the nurses. I have to say that I respect nurses and think that they are amazing and the majority do an amazing job, but Will has had some crappy ones lately. I went to see him yesterday and he was still in the outfit I put him in the morning before. So he hadn't been bathed or had his clothes changed in over 24 hours. And the nurses are supposed to change the gauze aroung his trach every 4 hours so his neck doesn't get red and raw. We've been over this and over this, and yet it still isn't happening. When I was there on Monday, his nurse thought it was supposed to be changed every 12 hours. Grrrrrr, it is really frustrating! But soon he'll be home and I'll know he's getting proper care because I'll be doing it.
Of course, even I don't always do everything right. Today was no exception. I took Mason and Hays to Wal-Mart to get stuff to make food for the party we're going to tomorrow. I put both boys in the car and told Mason to get in his carseat and buckle up while I returned the cart. My mistake was that I left the doors open so they wouldn't get hot. I put up the cart and turn to see Mason narrowly avoid getting hit by a van as he ran across the parking lot to me. He scared me to death and about gave the people in the van a heart attack. And even though I went over and over how dangerous that was, all he would say was"It's okay, the van stopped." I'm trying to drill into his head that it stopped this time, but it might not the next. I'll tell you one thing, I won't leave those doors open again!
But we were lucky and my kid didn't get run over. So we spent the afternoon making red velvet cupcakes for tomorrow. I hope everyone has a fabulous (and safe) 4th.

I had to spend the night up at the hospital with Will night before last. It went well because I feel like we'll be able to handle any of the nighttime stuff- not that there's anything all that different from the daytime stuff. I also got some peace and quiet after Will went to sleep. I read a whole book while I was up there! Today I changed his trach again and did all of his suctioning and trach care and it went well. I think we'll be able to handle all this stuff with no problem when he comes home. The bad news is that the doctor thinks that Will is going to need the gastric tube. He's just not consistent enough on his bottle feeds for thenm to send him home on the NG tube with the idea that he'll be up to full feeds soon. He did great yesterday, but today he only took 5 cc's at his first feeding and 10 at his second. So we're having the surgeons look at him today or tomorrow and then we'll make a decision. It's always something.
Hays is doing better at sleeping long stretcjhes. We put him down around 8:00, and he usually sleeps a 5-6 hour stretch, gets up to eat, goes back down for about three hours, eats again and sleeps a couple more hours. So it's not terrible. We'll be glad when he sleeps two long stretches and we only have to get up once during the night.