Day 6 Update

Maybe today, maybe tomorrow. . . we're not sure when we're getting out. It all depends on today's chest x-ray and echo. The x-ray has already been done and the echo is scheduled for 2 pm. Hopefully it won't be long after that they will let us know what is going on.

Brayden is feeling good. We took him to the toddler room for a little play time this morning, and he had fun. He crawled around a little bit and pulled to standing twice. He just seems to be a little hesitant and a little low on energy (all this laying around has probably zapped him!!). I just gave him a bird bath and washed out his hair -- he loves having his hair washed and brushed, so he liked that very much. Right now he's taking a nap (sorry echo lab, I know I am supposed to keep him up but he's tired and hungry, so I'm not going to fight him!!).

Here are some pics from this morning -- Brayden Boy has not lost his sense of humor!!

Choices, choices -- what's a boy to do???

You've got to get creative!!!

Now I'm sure you understand why I wanted to wash his hair :)

Ahhh -- so refreshed!!!

Here are some pics of some of the IV attempt sites. There are others, but these are the ones that bother Brayden the most. He keeps looking at his wrists and hands. He even makes a mean face and pokes at them with his fingers. . . poor boy!!!

Well, we got called to the echo lab right before I posted this. We spent over 2.5 hours there!!! We haven't heard anything about the chest x-ray or about going home, so I'm guessing that means we're not going home today :(

Day 5 Update

OK, I really owe you an update of what happened yesterday, so here it is --

The day started out great. At morning rounds, they all agreed that Brayden was ready to move to a stepdown room. We moved around noon, and everything seemed to be sooooo much better!!! Brayden had a great day. He was awake almost all day, and he smiled and had a good time. He played peek-a-boo and made faces with Emma for a long time :) He even got to take a wagon ride :)

What?? We're out of the room?? Mush, Jordan!!! Get moving!!!

In the afternoon, they found that his IV had gone bad -- again. So, they were discussing whether or not to try and get another one in. The drs in CICU had told us that he would be switched to all oral meds by today, so I didn't see the point in fighting for another IV last night. Guess what, no one cared what I thought!!! So for about 6 hours they tortured Brayden Boy last night. . . they just kept sending in people to try. Some of them were nice enough not to try the "stick and dig" method if they didn't see anything, others were not so nice. Even if they didn't stick, the whole situation really stressed Bray-My out. At one point the jerky dr came in (I didn't like him when we first came over, and I really don't like him now) and try to scare us by saying that they really needed the IV because he had way too much fluid on his lungs and the oral meds just wouldn't be enough. He told us that if they didn't get the IV meds in, Brayden would be going back to CICU. OK -- am I the one preventing you from getting the IV??? I guess he wanted us to say that we would leave the room and let them do whatever they wanted to Brayden Boy or something, but they definitely weren't going to get that answer from me. I just calmly replied, "I'm fine with him getting another IV, but if he really needs you better send someone in here who can do it. What you've done so far has NOT been working." He caught me at a bad time b/c this was right after 2 people from the transport unit had been in, and they were definitely the "stick and dig" people. . . then when they couldn't get anything, they actually got mad at Brayden and were telling him to hush (in a rude way, not a comforting way). Oh, well, finally after the talk with the dr, they sent in the "last resort" woman. She was pretty nice, but she did "stick and dig" a couple of times. Finally, she told us that she was sorry that they had done all of this and that she was going to tell them that it couldn't be done and that even if they did get one in it would more than likely go bad anyway. So after 6 hours, they switched it to oral meds. If they had tried that in the beginning, they would have already found out if it was going to work . . . oh, well, what do I know!!! They actually brought the meds in at midnight, and I got Brayden to swallow everything without even waking up.

Today, Brayden woke up feeling great. He got a good night's sleep, and he was ready for some action! At morning rounds, they told us that he was looking great and that we would probably be heading home tomorrow -- What was that now?? That's not what jerky dr said last night!!! Anyway, we are just happy that Brayden is feeling good and that he is not holding a grudge against us for all of the abuse he has taken. He still is not eating or drinking very well, but we are hoping that will change today. If things don't change, we may have to send someone out to get some O'Charlie's rolls!!! Here he is this morning --

Try as you might, I will not eat!!!!

Look at me -- I'm not connected to anything!!!

Early Day 4 Update

First of all, thank you to everyone for all of the comments and e-mails. It feels so great to know that we have so much support and that so many people care about our baby boy!!!

After a long wait, Brayden finally got to get the big chest tube and the temp pacemaker wires out. (BTW, gross!) Then we got to hold him!!! At first, he was so anxious that he couldn't relax. He was stiff, stiff, stiff!!! I thought that he wasn't enjoying it at all, but then they had to come in for a chest x-ray and I had to lay him back down. His eyes said, "No, Momma, no!!! I want you!!!" That confirmed that even if his body wasn't relaxing in my arms, his mind was. Once we got him back up, DH held him for a while, and he started to loosen up a bit. Later on, GG held him, and he went into a grandmother induced sleep coma -- ahhhh, just like home :)

I'm not so sure about this -- are you sure you know what you're doing??

OK, that's right - you are the good guys. . .

Last night went great. When Brayden got tired, he wouldn't go to sleep b/c he wanted to be held. I hesitated to pick him back up b/c I was afraid that it would be too hard to get him back in bed without waking him -- but it was not, and it was well worth it. He fell sound asleep minutes after I got him. His sats were so good on low O2 that they let him switch to a blow by. He was thrilled to get that cannula off his face!! He had been trying a "sneak attack" on it all day, where he would pretend to be rubbing his eyes and then sudden rip it out! He slept until about 4:30 am with virtually no machine beeps!!! 4:30 to 5, we had a few rounds of low sats . . . but now he is doing fine and is sleeping again.

Pittsburger, you be on the look out for those renegade nurses while I take a little nap.

Surely, surely, surely we will get out of CICU today after he has done so well. It is like we have a small victory party every time that they take something else off of him :) Aunt Emma has been a HUGE help and has stepped up to take the "adult handler" role that I usually fill. She's even been looking out for you guys -- she wants to video the next time the drs do rounds and put it on You Tube so that you guys have all the technical info :)

Day 3 Update

Well, we're staying in the CICU today, but I'm still hoping for a possible move this evening. We got "paired" last night, so Brayden's nurse had another patient -- I'm sure they regret that decision -- last night was rough! Brayden's breathing was pretty labored and sats were down in the 70s :( We were almost always mid-90s before surgery, so that is pretty bad!!! A chest x-ray shows too much fluid on the right side and the right lung is a little collapsed. The dang machine beeped all night, and they kept trying to reposition him to help him breath easier, so Bray didn't get much rest.

This morning we struggled to stay out of the 80s, but ever since Emma and GG got here he has been doing great!!! We're sitting at 97 right now, and he is taking a good nap. He has had 32 oz of soy milk since last night, and about 8 oz of juice. The bad news is that they only have vanilla flavored silk, and you guys know that Brayden does not like vanilla!!! He did wake up and "play" for a long time about an hour ago. Here is a pic --

Good Times with Puppy in CICU

Hopefully I will update again today with a picture of me HOLDING him!!! If we can get the chest tube out soon (the big one, they say he has to keep the "grenade" in for a while).

Picture Update

Where are we going Momma?? Why do you keep getting me up so early?You forgot to give me milk again. (Pre-op was on Tuesday, and it was the pits!)

Now what are we doing? Why am I wearing this dress?

Hey, man -- that stuff I just drank is far out!!! I don't care what we do now, man, this is cool :) ZZZZ -- Day 1, dreaming of ripping that tube out. . .
ZZZZZZZ -- Day 2, the tube is gone, so I can really get some rest. . . Notice that my A-line is now in my arm. Boy, was that a rough deal!!!

7:50 update - They took his A-line out and expect to get the chest tubes out early tomorrow. Brayden soaked down 8 oz of soy milk at around 5 pm, and then rested better than ever. He woke up for a little while, and enjoyed listening to and looking at his favorite book. Then he signed that he was ready to sleep and zonked back out. Right now, he's sleeping like a log. Hopefully, he will rest up tonight, impress them at morning rounds, and move on to Stepdown tomorrow!!!

*FINALLY* -- An Update

Sorry, sorry, sorry. . . I was exhausted yesterday, and I had trouble getting an internet cable to get connected today.

The surgery went very well. No surprises, no problems with anesthesia, no problems coming off bypass. The VSD was patched. The valve obstruction (which was mainly at the level of the valve) was cleared, and the PV was patched open with a piece of pericardium. They did get started a little late b/c it took so long to get his lines in -- poor boy has marks all over his hands and wrists where they tried many times before they finally put everything in his feet. They took him back at 9 am, started surgery at 10:45, and he was out at 2:10. He was on bypass for about 1.5 hours.

We finally got to see him in CICU at 3:50. At first, everything looked great and visions of extubation danced in our heads. . . within an hour, his mean blood pressures had jumped between upper 80s and lower 30s because he was losing too much blood through the chest tubes. Kim describes it as a scene from ER - she and Mom were in the room when the BP bottomed out and they were told to leave. Both of them left blubbering, and went out to the waiting room for a full-on meltdown. I, however, have been pretty good about holding myself together. They gave him platelets and red blood cells, and the drainage slowed down very quickly. They had also ordered FFP, but did not have to use it because his BP stabilized and all of his gases have been good. Thank you O+ donor, you're our hero!!

Last night was kind of rough, b/c Brayden Boy wanted to extube himself!! At one point, they said "We don't know if we have anything that will knock this boy out." Sedation hasn't been very effective or long lasting! At about 12:30 am, he did succeed in ripping out his arterial line, and it took about an hour to get another one in. DH and I had no idea that we would be so physically involved -- it's like we had to wrestle with him all night! We've gotten pretty good at holding him down, protecting the lines, and untangling everything.

Today has gone pretty well. He was extubated at 8:05, and he has shown no signs of respiratory problems. There was one emergency pain episode, where Brayden thrashed around like a shark out of water, but a quick hit of morphine settled him down pretty quickly. His sats are a little low today (100 all day yesterday, ranging between 85-95 today). BP has been pretty steady all day. He just got his NG Tube out about an hour ago and drank some Pedialyte. He has been resting quietly (first time since we've been here) since then. He can try some soy milk when he wakes up again.

The care at the hospital has been super -- Brayden has a 1-on-1 nurse, and so far we've had some really nice nurses. They told us today that Brayden (of course) is the talk of the floor, and that everyone is saying " you need to see the cute kid in 40". Hey -- I knew they were smart around here :)

Other people's blogs REALLY helped prepare me for how he looked after surgery, so I will be posting pics for the same reason. . . unfortunately, blogger is not letting me right now. I will try again later. He really does look amazing :)

3 Days Until Surgery -- And Brayden Knows that Something is Up

Maybe it's because we're acting funny or maybe it's because he hasn't been out of this house since Tuesday (strict homebound restrictions from Daddy), but Brayden Boy knows that something is going on. He's clingy, like he knows that he needs to be close to us right now (no complaints here). He has really enjoyed this weekend at home with no running around. . . I slept in yesterday and DH slept in today, so we're enjoying this weekend, too!!!

I rarely post pictures of myself. Actually, it's pretty rare that I let anyone take pics of me. HOWEVER -- I am making an exception b/c I love how happy Bray-My looks in these :)

Momma & Me
Oh, Momma -- You're so funny!! You look pasty white, but I still love you :)

I found this scene the other day. Apparently, Brayden found my Gameboy and wanted to play. DH turned it on for him, and he loved it!! On a side note, I'm not sure why he always seems to have one sock off (?)

Concentration Time

Hey, Momma -- how do you get past level 2?

Picture Parade

Sorry, you didn't get a "What I'm Thankful For" post on Brayden Boy. But, hey, if you haven't figured that one out then you haven't been paying attention!!! The truth is that I am trying to avoid an emotional breakdown, so I'm basically avoiding any topics that might lead to crying. So. . . I've got nothing to post :) Here are some pics -- that's what you visited for anyway, right???

Last week Kim and I took the kiddos to get their Christmas pics. While we were there, we went ahead and had them take some misc pics in some different outfits. Here are some of my favs (no, you don't get to see the Christmas pic, that is for my cards!) --

Yeah, it's me again -- Little Handsome

It's like we're straight out of 1960!!

From glamour to hip hop, we can pull off any look!! I love you, Jor Jor :)

Here is Brayden in a cute little matching outfit. I don't usually like "the baby look", but this really was cute.

I can even make owls look tough!

Here are a couple of pics of Bray-My with his great grandfather --

Oh, Papaw Jack, they bug me with that camera all the time!!!

Let's rock!!!!

Well, I had some more to post, but Blogger isn't going for it. I'll try to post again soon ;)

Return of Original Documents, "The Model" is on display again, and A SURGERY DATE

I know it's a mixed post, but hey, that's what's gone on this week!

First for the original docs. . . well, in Sept I finally got around to sending in the CIS form to get back the original documents from the super secret brown envelope that we handed over to Immigration when Brayden came home. What a treat it was to finally get that package in the mail this week! We got some new docs that we had never seen, including the original birth ticket. It is an interesting format -- little picture check boxes (reflective of the low literacy rate in Guatemala). We have checks for live baby, boy, healthy, and live mother. The birth ticket also gives us the name of the midwife who delivered Brayden, and it confirms his REAL birthday (there was a little confusion about that on some of the docs)! 08/22/05 it is :) What I was really hoping for and most happy to see in the packet was more pics!! We got another copy of the Polaroid of Brayden with his BirthMom from DNA day, and we also got a small portrait-style pic of Brayden and one of his BM!! These are such treasures to have :) Here is a scan of the new, never seen before Bray Boy pic, which was probably taken when he was about 1 month old --

Now for "The Model" update. In case you don't remember (but I'm sure you do b/c I reference it all the time), Brayden's portrait is on display at the pediatrician's office. They tell us that he is quite the popular guy and that people comment about him all the time. Well, the photographer was invited to participate in an art display with a theme about children, and she has chosen to include Brayden's portrait (and 9 others). He will be on display from now until the end of the year at Christ Church Cathedral in downtown Lexington.

Now, for the real update that most of you scanned down to read first (or maybe this is the only part you'll read?). . . We met with the surgeon at Cincinnati Children's this morning, and we went ahead and scheduled the surgery. December 6, 9am. That gives us 2.5 weeks to stress out about it! Please pray that Brayden stays healthy for the next 2.5 weeks. OK, parents of heart kids now is the appropriate time to start bombarding me with all of your advice and wisdom!!!!

He did it!!!

Wow, what is this -- 2 posts in 1 night!!!

First of all, I knew that this day was coming, and I knew that I would probably miss it. . . but man, it really hurt when I found out that I actually missed it :(
Brayden Mynor Elias took his first steps today!!! During physical therapy this morning, he got tricked into it :) He did it a few times for the PT, then he did it a few times this evening for me. He only takes about 3-4 steps, but to me, that is HUGE!!!! I am so proud of my amazing baby boy :)

Just the other day I posted a comment on Tracy's blog (Dominic link) about how attached Brayden is becoming to his pepe (pacifier). He crawls around with one in his mouth and another in his hand. Then he stops every minute or so to switch them. Now, just look what he has done - this is getting out of control!!!!

OK, so apparently we're in some kind of heat wave right now and it was back in the 70s today. Sounds nice, but in actuality, it's horrible! Everyone in this house is suffering major sinus problems!!! Anyway, I went up to put Brayden in his pjs tonight, and I was digging around trying to find something other than a fleece sleeper. There they were -- the Little English pjs that Emma bought several months ago. They were too big at the time, so I had forgotten about them. Just look at how cute these are --

Little Handsome

Excuse me -- I'm working here!!!! No more pictures!

I said no pictures! Do you want a piece of me??? Yeah, I didn't think so!

Brayden the Terrible

OK, just a short post to tell this story b/c I think it is too funny :)

Since DH works from home and he has Bray Boy with him all day, we have a babysitter who comes in for a few hours a week to give DH some concentration time. Here's our conversation when I got home on Tuesday:
Me -- So how did everything go today?
DH -- He is bad. He is very bad.
Me -- (Laughing) What??? What happened?
DH -- He ran off the babysitter.
Me -- What do you mean "he ran her off"? (Now panicked) Did she quit?
DH -- No, she's coming back but she couldn't deal with him today, and she just had to leave. . .

Apparently, Brayden was asleep when she came and when he woke up to her, it was totally unacceptable. She tried to calm him for a while, but DH said that he was going ballistic!! DH finally had to come up from the basement to check on him, and of course, Brayden was fine once his Poppy got there. He wouldn't have anything to do with the babysitter, so she just had to leave. I have been rolling for days :) It is so funny to me that Bray-My ran off the babysitter -- that takes one bad kid!!! No worries though, she came back on Thursday and Bray-My was just as happy as can be :)

We're Back!!!

Sorry -- I dropped off again!!! I'll try to do better. Brayden had a fun Halloween. He didn't actually go trick-or-treating anywhere, but he did enjoy seeing his cousins all dressed up :) He also had his first taste of candy (I know, I'm a mean Momma). Here are some pics --

A bee, a cheerless cheerleader, and a cowgirl -- what could be cuter?!?!

What is this thing??

Hey, that tastes funny!!!!

I like it, I like it!!!!

In other news, I got my first taste of sitting in the hospital with a sick baby. Sweet Cousin Tia got sick and dehydrated and had to spend the night in the hospital a little over a week ago. It was heartbreaking to just sit there and not be able to help her -- I don't know how I'll make it when it's Brayden and it's more than one day. Tia is doing much better now. Here she is looking beautiful the weekend before she got sick --

My Belle with my boys :)

So this morning we went to the pediatrician for Brayden's November dose of Synagis (or liquid gold as the nurse referred to it). OUCH!! The first needle was huge, the second needle was normal. Brayden screamed and shook all over, but as soon as I told him it was "all done", he waved the finished sign and forgot all about it. It was much easier than I expected. . . we'll see if that's the case after a few months though! While we were there, we had the dr check Brayden out since he had a little cough and a runny nose. He has another ear infection -- dang it! We just had one 3 weeks ago :(

After the ped appt, we went to meet with one of the surgeons on our list. It was a pretty good meeting, but it was much more of an emotional drain than I expected. It's one thing to think about the surgery, and it's another to actually talk about it and plan it. This is probably not the surgeon that we will use, since this hospital averages 10 or less ToF repairs a year. However, if we did go to this hopsital, the surgeon says that we should move forward right away and he could get it scheduled in a matter of weeks. Hopefully we will hear from the other 2 very soon so that we can make a decision and move forward.

Big Brother & Little Sister

That's right, it's a girl! I had the u/s today, and found out that Brayden will have a baby sister. As we waited to see the dr after the u/s, it hit me -- we are doomed!!! When this girl is a boy-crazy 14-year old, Brayden Mynor's 16-year-old friends will be hanging out around the house!!! Uh-no :o

Hey, Bray -- what do you think about Little Sister???

Anyway, we have NO ideas for names, so if anyone has any great suggestions, feel free to share them!!!

Now, for the update on Bray. . . well, on Monday I found out that the cardiologist's office STILL had not sent out his info to the surgeons. Yeah, we were waiting for 3 weeks for nothing! ARRGHHH! They were supposed to get it sent out on Monday --- funny how they found the time to get it done after I called them. Maybe we'll get to talk to the surgeons some day. . .

Brayden has been working HARD on getting some more teeth. Right now, he looks like a jack-o-lantern. Just in time for Halloween, he has one front tooth on top and one fang. The fang actually showed up first, and it looks pretty darn funny! He should have several others soon, but I've been saying that for months and those teeth just won't leave the boy alone!!!

Bray got a flu shot this week and had his renal u/s. We're waiting for the dr to call us back about the u/s, but DH said that he definitely had 2 kidneys, so that's a good thing. His first dose of Synagis should be at the dr's office by Nov 3, so not long until we find out how much Bray hates that!

Here is Brayden Mynor's new favorite game -- I call it the hamster wheel. He got this ball pit for his birthday, and he didn't seem to like it for about a month. He wouldn't even go in it. Now we can't get the kid out of it!! Those pesky plastic balls are thrown all over the place all the time, and Brayden spends a lot of alone time in the pit. He likes to push it over (while he's inside), and then turn around and push it back over the other way. In this pic, he got his hamster wheel stuck on another toy -- but he kept trying!!

Brayden as "The Bee"

Joining a family of girls, Brayden hasn't really had any hand-me-downs. . . so it's nice anytime that he can share some kind of tradition with his cousins. It's hard to ignore that cute little owl costume in the Pottery Barn catalog, but Brayden will be "The Bee" for Halloween.

Here's Jordan at 7 months old -- The Original Bee.

Here's Tia at 10 months old -- The Big Bee.

And now Brayden at almost 14 months old -- The Boy Bee.

I'm sure the costume will be much cuter once we get a black shirt and pants under it. Bray's cute in anything so, no worries. Next year, New Baby (the disappointingly vague and impersonal term that we now use in reference to our unborn child) will be "The Bee", and Brayden will probably be some goofy character that he'll be obsessed with at the time. . . oh please, oh please, don't let it be Elmo or SpiderMan!!

Rub-a-Dub-Dub, Brayden Boy in the Tub

I love bath time so much. Momma gets to give my bath on the weekends, so that is even more fun! I have to sit in this seat b/c I won't stop trying to stand up in the tub. I can even stand up in the seat, but Momma doesn't like it. Hey, GG, is that your cousin in the background??

Momma calls me Squiggy after my hair gets all wet like this. . . I don't know what she's talking about, though.

I like my hair this way -- I think I can pull off a mohawk and still look good!

Hey, Jordan, Momma says that if I die my hair green and wear it like this maybe I could work at Journey's in the mall. What do you think?

Fall Fun

Today we went to Evan's Orchard for a little fun with the local Families with Children from Guatemala group. Brayden got to hang out with 2 of our favorite familes, and he really had a good time once it warmed up outside. Here are some pics --

This is me with my friends (Rachel, McCaleb, Ali, & Kaleb) hanging out in Kaleb's cool wheels. This wagon is definitely going on my Christmas list :)

Momma says this is one her favorite pics ever. . . I can understand why, I'm looking pretty darn cute today.

I really like this big orange mountain of dirty pumpkins.

Oh, no, Avalanche!!!!

Yay -- this is fun :)

Here are pics of Brayden taking a nap yesterday and today. It seems Brayden has worked out a new rule for naptime -- where he falls is where he sleeps. . .

Finally -- Referred for Consultations

OK, the Infectious Disease dr confirmed that the TB infection is latent and that it would have *NO* effect on surgery. Based on that, I called the pc and asked that she refer us for surgical consultation -- she STILL wanted to wait! What??? Anyway, I told her that we were uncomfortable with the "wait until he has more symptoms" plan, so she agreed to send a copy of his stuff to the surgeons so that we can get some consults. . . now, back to the waiting game. Hopefully, we won't have to wait too long before we can find out what those guys think.

Anyway, Corey's been posting all kinds of cute videos of Sophie & Luke, so I got motivated to try and get some video of Bray-My today. He has a new game -- "Sick Baby". He makes himself cough if you respond with sympathy. He is such an actor!! Brayden has never stopped this game, he will go on as long as you will. . . I always quit first. Here's a short clip of him playing -- sorry it's so dark and the soundtrack doesn't match up with the video. . . DH says it's like a bad Spaghetti Western. The funniest part is that while I was watching the video to make sure that it posted, Brayden heard it and started an encore!