Wednesday, October 31, 2012

Preschool Halloween Party

 Boston and Jane are ALWAYS SO entertaining on the way to school in the mornings. Ever since we had the big tornado thing in the spring Boston has been so interested in the weather news during storms. Before school we were watching news coverage about Sandy and he made sure to tell Jane all about it when we got in the car. He told her how people didn't have any "electric" and couldn't use their fridge and stove so the would have to make a tuna salad to eat. He also said it was so sad because the kids wouldn't be able to go trick or treating. Jane listened very well and when he was done she said "don't worry Boston I am super girl and my super power is to raise the sun and there are no storms in the sun". It was hilarious and they went on about how their super powers were going to save everyone involved in Sandy. Cute cute kiddos!
 This is Boston and his current crush Katelyn. I'm pretty sure he is way more interested in the girls at school. All is "best friends" happen to be girls. 

 Grandma D came too!
Super Heroes were the thing this year. About half his class were super heroes it was very cute. He sure makes one cute Captain America. He was SO excited for his party and came in bright and early begging to put his costume on. Sure do love that handsome boy!

Pumpkin Carving

 After what I'm sure felt like a life time to Boston we finally sat down for Family Home Evening the other night to carve our pumpkins. We let Boston choose our designs this year. Not sure how we ended up with the Disney characters and Boston had the scary one, but he was pretty proud! As you can tell I seriously struggle with carving pumpkins. Boston said "Dad and Bobo win first place and you did ok Mom". Ha thanks buddy but it's true. 
We tried to get Carter in on the carving action, but he was way more interested in treating the pumpkins like balls and chucking them off the table. We let him loose and holy smokes he did some serious damage around the house. I think he unloaded every drawer we have and boy was it messy. Boston as usual was not a big fan of the guts and wasn't too much help in that area, but he held his own with that carving knife. Yikes! Such a fun night and the boys were so happy to see the final product all light up outside. 


You know those moments where everything just seems perfect? I love those and have been trying to notice them more. Since we are kinda cooped up for the season and can't make many social outings I am trying to soak them up. Being cooped up and at home is not really my thing. I love to be home, but I need to get out also. We are all adjusting to our new low key schedule and well it is for sure taking some adjusting. Carter I'm sure is loving it. Boston probably thinks I am the most boring thing ever and is constantly asking what we are going to do. I am trying to be ok with not having a plan and realizing it's ok to do nothing.
 The first go around with the Letter Factory game was definitely one of those moments. After the 15th time of playing not so much. What else are we supposed to do and if he is happy lets let it last. 
 This moment right here was SO perfect. The boys weren't teasing each other which is happening all too often these days. Carter felt so big and so proud standing up at the counter all by himself. Boston was taking over the baking and stuck his fingers in one too many times to make them ok to give out to friends. It was the best!
Carter isn't supposed to eat anything until his stent gets out in November. He has been approved to drink liquids. Never before has this kid been more interested in food than now. I let him sneak some bites of the cream cheese filling and he was loving life. 


It seemed like forever for the cultures to come back and see what was growing. I wasn't shocked at all when the results came back with MRSA also know as staph infection. He got it once in the NICU and will always be more susceptible to get it. He also had an infection called pseudomonas or something like that. He was on IV antibiotics the whole time we were there. Each cycle was six hours long and four of the hours he had to be in bed because the cord couldn't reach anywhere and when we tried to hold him he would jump out of our arms. Speaking of IV's he pulled his first one out and once again the kid is near impossible to stick. They tried five times and were not successful. The last person came in and thankfully he was able to get it or they were going to have to surgically insert a broviac line. Which in all reality wouldn't have been the worst thing. We might suggest it at his next surgery because there is no reason he should have to be messed around with for hours every time he needs an IV and he will need them lots over the next couple months. 
 Trying to keep him entertained was the worst! 

 This boy LOVES cars! Big cars are his favorite. I think we drove this one back and forth at least a million times. I'm glad it didn't get old for him, because I was sure I couldn't listen to the siren one more time without dying. JK
 Boston sure made himself at home. He was in heaven during the above pic. Watching Berenstein Bears while eating yummy cake from my awesome friend!
The doctors came in Sunday morning and said that all the labs were back and they knew the sensitivity of all the meds he needed. This was all they needed to send us home so I kindly informed them that Boston had his primary program that morning so we had to be out of there by 10 am. Boy did they move quick! I think I know the discharge game now, because it usually takes FOREVER! My brother Kyle watched him while Trav and I went to church. He sent me this sad pic. Poor kid was burnt out and fell asleep in a pile of Lego's. One thing is for sure a hospital is not the place you go for sleeping. 
In other news we got Carter fitted for his little ankle braces and he chose the above design. I'm not surprised at all. He goes for anything with cars or balls. We should hopefully get them in a couple weeks and are so excited they should really help with the whole balance walking thing!

Thursday, October 25, 2012

Annnnd we are back!

Dang infection has brought us back to the hospital. Boston is thrilled about it. He loves this place. Carter on the other hand isn't excited at all.

Don't let this cute pic fool you he was not nice at all to his nurses. I think he is old enough now to realize exactly what is going on especially after last week. He had to get an IV again and like always it was not a fun time.

In other news I have at least 100 pictures like this on my phone. Boston was busy while we were getting admitted.

Speaking of Boston he is such a trooper with all this stuff. He was an angel today and passed out within minutes for Trav tonight. I sure do love that boy!

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Good Scar Bad Scar

When I had surgery after Carter was born I remember one of the nurses in the ER told me that my C-section scar was beautiful. I wanted to smack her. I kept thinking there is no such thing as a beautiful scar. It only took a couple weeks for me to realize what she was talking about. Carter got staff infection on his scar where he had heart surgery. When a scar gets infected the infection usually has to be scrapped/cut out (like with his heart one) or it opens the incision and drains out (like his neck one). His heart surgery scar is pretty nasty these days it just didn't heal well after infection. His scar that goes down the middle of his stomach on the other hand is a "beautiful" scar. It has healed so good and we almost don't even realize it is there anymore.

I was really hoping for a beautiful scar for the incision on his neck. The incision itself would have left a good scar especially after they close up the trach hole. With this dang infection it doesn't stand a chance of leaving a "beautiful" scar. This is the one I have worried about the most as far as getting teased and what not. Good thing for plastic surgery right?

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Not for those with a weak stomach....

Here is a pic from yesterday of his incision (and trach hole. I don't think I have ever put a pic of the hole on here sorry if it makes you want to vomit, but its a very normal thing at our house) on his neck that is infected. Obviously the left side is where the infection started. I won't even post a pic of what it looks like today. It is too nasty and Trav doesn't even want to see it so if figure most won't either. Your just going to have to trust me when I say it's pretty darn bad :) today about 3/4 of the incision is open from the infection trying to get out. SO gross!

We are back at Children's in Plano thankfully. I hate Dallas it's too big and too far. They have started him on some pretty heavy IV antibiotics. We are still waiting for the cultures to come back from the lab to find out specifically what he has. He will do the antibiotics six times a day and they last for two hours.

We saw this coming and are not at all surprised to be here. I feel like when I say it's he whole surgery thing was too good to be true that I am lacking faith. Maybe I am, but with Carter things just never seem to go that smooth. We are glad we are here to kick this infection in the butt and try to get his wound healed as best as possible.

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Friday, October 19, 2012

Tough Kid!

We are home!!!! I am still in shock that everything has gone SO well. The Doc told us today that Carter's reconstruction so far has been a best case scenario. Wednesday night and Thursday were LONG. Carter got very dehydrated which resulted in no wet diapers and super thick secretions that would clog his trach and make him turn blue. Not fun. So they gave him a new IV which they got on the first poke thank goodness and pumped him full of fluids. We went from one extreme to the other. He had so much fluid in him that he had super juicy secretions that I was sure were never going to end. Poor kid was getting suctioned every couple minutes all day long. By the end of the night things were getting back under control. 
 Thursday we were also able to give him a "bath". Good things because he was stinky!!!
 Yep I was that tired. I don't think I slept for almost two day straight. 
 Although we really don't like being at Children's Boston LOVES the "Red Balloon" hospital. There are kids libraries, play rooms, craft rooms, and so many fun things to do. 
 Love my boys!
 Grandma, Grandpa, and Bobo came up to hang out with us at the hospital. Sure was nice to have company.

Here is the little guy at home acting almost as if nothing ever happened. I just sat and watched him do a silly little crawl (as he protected his rib I'm sure) around the house while playing with toys. Totally in awe that Monday he had a major surgery and yesterday he could barely sit by himself. I cringe every time he moves his head or body for that matter thinking it should hurt him, but he doesn't seem to mind. I prepped myself for infection, long hospital stay, sad baby, whatever you name it and we got out almost without any complications. The whole process seems so anti climatic. We have built this thing up for so long and just like that it is over and he is doing great for which we are SO happy about.  I am feeling so blessed. Heavenly Father truly is aware of us and answers our prayers time and time again. 

One thing is for sure, we have one tough kid!!!

If all goes as planned we will get Carter's trach out on December 17th which is 59 days away!!!!!!! It all seems so surreal that we are really this close to being done with it. If you don't see us over the next 59 days it's because we are going into hiding and keeping that boy healthy so sickness doesn't get in the way of the rest of the surgeries. 

Wednesday, October 17, 2012

Days 2 and 3

I am going to make this quick because I am typing with one hand on the iPad and most importantly I FINALLY have a sleeping baby! Sleep is something that hasn't happened since surgery for longer than twenty minutes. He will now only sleep on my chest and right now I am perfectly fine with that.

Day 2
Started off the day still on the sedative and vent. Mid morning we put him on an hourly pain med and switched him to cpap. By late afternoon he was off cpap and oxygen and they switched him to loratab for pain management. He does much better on loratab for the pain but has a hard time sleeping on it. He will fall asleep and about ten minutes later jerk and then he cries because it scares him and I'm sure causes him some pain. He did perk up a little bit though and was giving high fives and knuckles. He even cracked a few smiles here and there.

Day 3
Wowzer today has been a long day! Little man is exhausted! They started off the day by removing his drain tubes. Wahoo! Those things made me so nervous. They can so easily cause infection. Carter was not as excited about the process as we were it made him ticked off! Thank goodness he had his two grandmas and nurse Cathy (NICU nurse) there to comfort him during a rough morning.

His incision from removing the rib cartilage is about three times longer than we were told. O well it had to be done. I haven't gotten a good look at his neck incision mostly because he won't let me. A huge positive was that they were able to put the drain tubes in the two incisions instead of making two other ones like they had originally planned.

Along with removing the drain tubes they tried to get a new IV for him. He is a near impossible stick so that didn't go over well. Carter won the battle and ended up not having to get one and got his other one removed. Around 5:00 we said good bye to the PICU and were moved down to the pulmonary floor. This place is heaven compared to the PICU. We have a private room with a bathroom and it is so much quieter. Carter is loving it. I think the thing that makes him most happy is that he is able to get out of bed. He hasn't let me put him down since. For the first time since surgery he is sleeping soundly so I will gladly hold him all day if he can get some rest. Over all tonight he seems like a much happier boy. He is moving around a little more and I am seeing small doses of my baby come back.

I am assuming that we will be heading home soon. Probably Friday, but who knows. He still is in quite a bit of pain and has a ton of secretions, but nothing that we couldn't manage from home. I am always so eager to get out of the hospitals. There is so much sickness here and the last thing I want is for him to get sick.

PS. I can't feel my left arm or right butt cheek ;)
PPS. There hasn't been much talk about the big brother around here, but he is super cute. I spent the morning with him building train tracks and he told me he "misses his little buddy". He's the best! I miss him, but thankfully I don't think he misses me too much yet. Grandma is making sure he is well taken care of.

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Monday, October 15, 2012

After surgery........this is hard

I thought I had prepared myself well for this, but after taking one look at him I realized there is no way to prepare yourself to see you baby in pain.

When we got in his room he was breathing on cpap and doing pretty good. It didn't take long though for the anesthesia to wear off and the pain to set in. I have seen Carter go through a lot of stuff and I have never felt like it was too hard to watch. Tonight was different. It took everything I had to stay by His side and hold his hand. Seeing him in so much pain and reaching for me to hold him when I couldn't was just too much it absolutely broke my heart. He also had moments where he would desat into the 50's which we haven't seen since his NICU days and those are days I never wanted to see again. Dr. McClay is a man of very little words and a very aggressive doctor which seems to be the case for most surgeons. He wanted to be aggressive in Carter's recovery and wean him quickly off of pain meds. I am all for being aggressive, but I don't think that hours after a major surgery is the time to be. Our selves, our nurse, and RT all agreed and together we got the PICU doctor to put him back on some sedative meds. Being on the meds requires some ventilator support and as much as I hate the vent I am happy he has it and glad that he is finally comfortable. There isn't really any set plan as far as recovery goes we will just take it as it comes and give little man what he needs. My heart breaks for him. It is so hard to watch him go through this. I am happy that we are hopefully on the home stretch for all these trach related issues.

Thank you again for all your prayers for our family. We have felt and needed them today.

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LTR Surgery Day

We got here to Children's hospital in down town Dallas at 11:00 am for check in. We did a lot of waiting and a lot of walking with little man.

12:30 we finished signing our lives away. He was given silly juice to make the separation easier for him. And they rolled him away back to the operating room. He didn't seem to mind at all that we were leaving which was definitely an answer to prayer. In fact he was pretty darn happy using his pulse ox cord as a phone.

2:00 pm- we just got an update saying "he went to sleep just fine and is doing just fine". That's it. Ha. I guess we had a different idea about what the hourly updates would be. So no worries he is "just fine" ;)

3:00 pm- "everything is going according to plan" and "not sure how much longer". They really give out a lot of information ;) in other news it was a terrible place for Trav and I to set up camp next to the bathroom in the surgery waiting room. All I can say is nasty!

4:00 pm- "they are still working and don't have an ending time yet"

5:00 pm- still going we are the only ones left. Taking too long!!!!

5:30 pm- Five hours later surgery was finally over. Dr. McClay said that surgery went wonderful! He was so happy that when he went in Carter hadn't formed any new granular tissue spots. Let's hope that goes for this too. He was able to get the piece of rib out very easily and and split his airway open in two spots and fill it with the new piece from his rib. He put in the stint and reported that his vocal chords look very nice and is hopeful that they will function well going forward. After chatting with the doc we were sent back to the waiting room for an hour while Carter finished up in the OR and got settled in the PICU.

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Thursday, October 11, 2012

Dallas Arboretum

 Yesterday we spent the day at the Dallas Arboretum with Grandma D. It ended up being the perfect day! The boys were SO good and the weather was cooler, but SUPER humid (hence the frizz ball hair of mine).
 These next three pics are some of my favorite from the day. Carter is BIG time into walking these days. Little stinker wont do it with any sort of walker or holding onto anything but somebodies hands. If only he understood how much quicker he would be walking on his own if he would branch out. Stubborn boy! I love this pic though you can tell he is on a mission!
 He does a great job walking around even when big brother throws off his balance when he sees a stick  he "has to have". 
 If you can't tell Boston thinks Carter's walking business it pretty great too!
 How do people get decent pics of their kids together?!?!  I love this series of pics this is pretty much how it always goes whenever I try.
 Usually it's Boston that is not willing to participate. Suprisingly yesterday Carter was the one who wanted nothing to do with it. Mostly because that meant he had to stop walking.
 Grandma D with her two favorite little guys! I love my Mom she is a Life Saver in SO many ways!
 I was so excited that they had a Chihuly exhibit there. When we were in Seattle this summer they had one, but we were not about to pay $18 to go in an exhibit full of glass with kids. His stuff is absolutely amazing and I'm pretty sure Boston thought it was just as cool and my Mom and I did.
 When you can't get a pic of your boys together it never fails to jump in the pic. Besides I'm always the one taking the pics so it's fun to have pics with me and my boys every once in a while.
 Boston LOVES this place. He had so much fun leading us all over the place and the "secret passage ways" were a huge hit!
Bottom left pic is what made Carter happiest while we were there. He wasn't too sure about all the bark and for sure was not a fan of me posing him standing up for a pic. 
I love these two goof balls and doing fun activities with them is one of my favorite things ever! Especially when it happens to be in an absolutely beautiful place!

Self Feeding

People ask all the time if Carter can "self feed". Well it depends on what you consider self feeding. Can he hook up his feeding tube which is filled with his food? You bet! Can he put food in his mouth with finger, spoon/fork, and cup? You bet? Can he swallow all that food and give himself enough food to grow? No, but who cares. We think his way of self feeding is pretty dang cute and super messy I might add. You would think he had cleaned out the pantry by his surrounding when he is "finished". It's hard work chewing all that food and where else would you put chewed up food than on the floor?

This Big Boy

I am crazy about this kid. I am blown away every day with how big he's getting. I mean he is almost 5 which means he's basically almost a teenager! Somehow he can make me want to give him away on the streets one minute and then burst with love the next. If I'm being honest it's rather annoying. How do they know just what to say and do and when to say and do it?!?! He is the master manipulator and well I guess I gotta give him credit for being smart. He turns everything into his idea and makes it sound amazing. To sum it up I am in love with this boy and he has some killer bike tricks. 

Therapy Break

This week we finished up our last therapy appointments for the year. Miss Jenny (left. speech) and Miss Lindsey (right. physical) are such incredible women! They have given me so much confidence and knowledge in ways that I can help little man further develop. I feel like it has come at such a sad time. Carter has never really been a fan of PT mostly because it is a lot of hard work and lately with his new walking skills he has LOVED it! Such is life right? I will miss these two, but am really looking forward to not driving 20 minutes 3-4 days a week for a couple hours of therapy. It gets kinda old after a year and a half. Now we are just crossing our fingers that when the new year rolls around we are lucky enough to fit back in their schedule.