Sunday, July 29, 2007

Update on B...

Hey guys...we have been and still are out of town, so I have been kinda slow to update. Here's the latest on sweet B...

July 26
It was a very good and bad day. When I got there, B smiled great big and we threw a little nerf ball back and forth. Then he pointed for me to put chapstick on him and said please. It was wonderful to see him like this.

However, 10 minutes later, they took him to do a procedure removing fluid from his abdomen to test it. Well, the fluid shouldn't be there to start, but if it is there, should be clear. Well, his is very dark yellow tinged pink. The dr think it may indicate a liver problem--something dealing with when they removed the gallbladder and reconnected to the intestines, but not sure. At any rate, they had a hard time sedating him for the procedure.Well, when he came to, he was not the same little guy. He was crying non stop from 3 until 6:30, and got extremely combative. He scratched, clawed, crawled up his bed and became very very strong. They think he had a reaction to one of the sedatives and instead of sedating, it kinda wired him--he was like a little wild man. He pulled his IV's and the PIC line (the feeding IV) out and had to get another IV and will have to go under again to get the PIC line redone. Most likely, if the liver issue is there, he'll have another surgery to repair/etc. They also think he was in a great deal of pain and that, with the reaction just made him irritable.

At one point, he grabbed D's orange juice and sprite drink and started gulping it down--now this is the same kid that didn't even want an ice chip. Then he was crying and reaching for every drink in the room. It was extremely emotional and believe it or not, all happened so fast and for so long, we just didn't have time to call anyone--I didn't even call Charlie till after 6.

When I left around 7, he was given morphine and fetanyl and was resting. D had climbed up in the bed with him and was throoughly exhausted and was trying to rest. C was on his way stuck in traffic. They have a room at the ROnald McDonald House for tonight--C was going to check in and then D's plans were to go take a LONG hot shower and take a nap there while C stayed at the hospital, and then maybe they'd swap off in the middle of the night. She is at the point where she knows she needs to sleep and that she will have to leave B for a little one.

Guys, it was so scary today--But I am glad that I saw him before all this. I think the reaction and sedation was a setback, but I think he'll continue moving forward since he was in good spirits earlier in the day. I'm glad he's in PICU b/c they are monitoring him like crazy and really seem on top of things.

July 27
B was going to have surgery today on his liver - the tests that were done yesterday revealed that the fluid pooling in his stomach is bile that's backing up from the liver. They were going to do surgery today, but he had a fever spike last night and has an infection they have to address first. He's on new meds and has a pain pump that D can administer as needed. Hopefully the infection will be gone by Tuesday and he'll be able to have the surgery then - he has to have it or the bile will poison him. As soon as the surgery happens, they're going to work on giving him clear liquids and feeding through the tube. They won't put the PIC line back in b/c of the infection, and since the tube is so close to the heart they don't want to take the chance of infecting the heart. So for now they're just giving him the IV drip. As soon as they get his nutrition sorted out and he's eating again, they will start to address the problems with the heart.

He did have a few more episodes last night with the aggression and reactions to the meds, but is resting now.

It's looking like they will be there about 3 more weeks, and D is not going to the new house until B can come with her. She had to go home without him when he was born, and won't do it again. She is periodically going to the 4th floor to the Ronald McDonald house and taking naps. She understands that she needs to take better care of herself so she can stay strong for B.

July 29
From D....
Hello everyone, I am just taking a few moments to update you on B's condition. We are waiting for Tuesday to get here so he can have his procedure (possibly Monday). So right now the doctors are just trying to keep him as comfortable as possible. The morphine pump does help some but he still has discomfort and pain. Since Yesterday his belly has been getting larger so hopefully it will slow down so Byson can continue getting his strong antibiotics to get rid of as much bacteria as possible before he goes back in. I do know that the procedure will take about 2 hours and I should know today if it will be done Monday or Tuesday.

On a good note he ate about 1/4 of a popsickle yesterday and had some Apple Juice. This was awesome!! especially considering that it has been 13 days since hes had a meal. We have been moved to the PCU but I did not realize until yesterday that it is still apart of the ICU so there are still restrictions but B is watched very closely.

Keep those prayers coming. We really need the infection to be gone so that he can have surgery tomorrow or Tuesday!

***I also hope to post something late today or tomorrow. We are in Mississippi visiting my Nana and PawPaw. This is one of my most favortie places on earth and we are enjoying every minute of it. Oh, and eating of course. You don't come to Nana and PawPaw's house and not eat. I can smell the ham and purple-hull peas cooking right now! YUM!

Thursday, July 26, 2007

Yes...It's Late....VERY Late

I sit here at my computer at 3:40 a.m. with a heavy heart. I can not sleep (obviously) and therefore I blog asking for more prayers.

Here are the updated posts on sweet B, most of these are from the members in our group who've been able to go see them. They are all so heartbroken when they leave:

Went to the hospital for about 5-6 hours today. The good news is that they did a GI scan with dye and found that he has a VERY slow digestive track, so the gtube feedings were filling him up and they weren't being absorbed in the 2 hours and then the next feeding would come and basically he was backing up and that's why he's vomitting and gagging and part of the reflux. .

So today they did NO feedings in the Gtube and just all of them through the IV lines and he was better--wasn't in as much pain. D said he was up ALL night crying and siting and in so much pain because they were still trying to feed him then. He is still so listless-no smile, no laugh, no talking. Occasionally he'll take an ice chip for me, but that's it by mouth. He sleeps most of the time, which is good cause he's needs his strength. We stood him up in the bed today and he supported himself with his legs while leaning on me and I had my hands under his arms. That was progress.

7/25/07 - am
Devona called this morning. They ran some more tests and did more xrays on B this morning--last night was a very bad night again. He is already in an ICU of sorts from the surgery, but will now move I think to the cardiac ICU. His heart rate has been dropping into the 70's and low 80's and it's usually 120-130. She said they will have a full team of doctors to evaluate him now--I really think the drs are just as frustrated cause he has so many different things going on at once and they have to be careful treating one issue so it doesn't aggravate another.

7/25/07 - pm
B has been moved to PICU, (pediatric intensive care) which is good because they are monitoring his every breath, but there is no couch, no bathroom, no comforts, just 2 chairs for D and a visitor. Today, they did more tests. The barium from yesterday is still in his intestines, so that means nothing is hardly moving at all. They also diagnosed him to have an enlarged heart, an enlarged right and left ventricle and an enlarged spleen. The heart issues are new but could be related to the high blood pressure. His heart rate is slower than before.

The GI surgeon feels there is a leak either in the gallbladder or the fundo....thing (the stomach attached to the espophagus part). He said a leak is normal, but they normaly go in and do exploratory surgery to find it and seal it, however, B is not strong enough to go through that right now. So he is still being fed through IV's and the PIC line (the IV near his heart). Nothing by mouth except an ice chip or two when he'll take it. He had another swallow study and he swallows okay, but as something travels down to the stomach, things are not aligned so something isn't right. It's now been 9 days since he took anything by mouth.

B is nonresponsive--not really moving and not speaking at all. D said he won't even talk to her. She said he has lost the fighting look in his eyes and just kinda stares and looks scared. Ony 2 visitors are allowed in the room at a time, no one under age 14 and no one that is ill. There is a Ronald McDonalad family room on the 16th floor where D can go to take a shower but she has to leave B to do this now. They are trying to get them into the Ronald McDonald house so they have a room there of their own (her and C) but again, that means they have to leave B and D just can't bring herself to do that right now.

As you can see, the news is just heartbreaking. I can't even begin to imagine. I've also talked to another friend who said the same thing; B looks like he's giving up. She said that when she saw him today he looked like a different person. He just stares. I look at my little man and I can't even begin to imagine what I'd feel going through this. It's one thing when they are sick, but to see the light and joy gone from there just brings tears. So PLEASE keep my sweet friends in your prayers. They need every bit of it.

Monday, July 23, 2007

So, I fell in love all over again today. No, I did not receive a surprise Range Rover from my husband. But close. I got to watch him take JD golfing for the first time today. Ok, so it wasn't actual golfing, but they did hit balls at the driving range and Jimmy showed him how to putt.

This is something very special for Jimmy. His own dad taught him how to golf at a young age and I know it's something Jimmy has looked forward to since finding out we were having a boy 3 years ago. I know he only wishes his dad were here to see it.

While I did not participate in today's golf lesson (I should have), I did photograph it!

Here are a few great pictures from today:

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Jimmy helping JD

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JD said, "Take a picture of my club!"

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I can do it just like daddy!

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Daddy is trying ot get the stance just right!

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Now we are putting...

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It's amazing because JD loved it. We weren't sure how he'd do, but he enjoyed every minute of it. He would have stayed out there all night! I sure hope he enjoys it as much as his daddy does. Jimmy can't wait to go golfing for real with his boy!

Sunday, July 22, 2007

My Childhood Home

My Childhood home...

This post comes at a odd time all around. Just yesterday I went to a bridal lunch for my best friend from childhood. Kelly, Jennifer (my other childhood best bud) and I sat around with our mom's reminiscing the good ole' days. We talked about the clubs we created, the slumber-party's we attended, and the great outfits we'd dress up in to play teacher.

This post also comes just days before my dad puts my childhood home on the market. This is bittersweet for me. I haven't been in that house in years! I guess the last time I was there would have been shortly before my wedding before my parents divorced. So...3 years ago.

It wasn't anything special. It was brown, dark brown with tan bricks. It was a small one-story on a street full of one-stories. Now that I think of it, I'm not even sure if there was a two-story on our street. It was diagonally across the street from one of the greatest friends I have ever had...still have actually.

We had a cute front yard. Nothing extraordinary, but cute all the same. We had an awesome garage. It wasn't your typical concrete garage, but a slick painted/stained one that made for the best-homemade-skating rink EVER! Kelly, Jennifer, and Ashley (my bestest from across the street) and I would skate for hours in my garage. I can still remember coming home from school after "rodeo week" and trying to line dance to Achy Breaky Heart on roller skates. How we never broken any bones, I'll never know.

The inside of our house was as simple as the outside, and matched as well. We had the ugliest brown carpet imaginable. I wouldn't be surprised if it's still in there. Actually, I'd be more surprised if my dad had replaced it. I can remember him always saying, "We are not replacing this carpet until these kids learn to stop spilling stuff!" This was obviously before Playtex made their fine spill-proof sippy cups!!

We NEVER used the front door. It was always locked and it wasn't until I was in high school that we ever opened it for anything other than solicitors. My parents finally put a storm door on it and we actually went in and out of it occasionally. My room was on the back half of the house and my sister's was down the hall on the front end. I don't know who had the bigger room. Maybe they were the same. All I know is my sister's room always looked like mine. This was not due to my parents either. This is because my sister copied every little thing I did. I'm almost 7 years older than her, and she was my shadow for many, many years. If I got flowers from a friend or boyfriend, I always hung them to dry on my walls. Shannon would then pick her some wildflowers and do the exact same. Then I hated it, now it's a wonderful memory.

My room changed only a few times growing up. When I was little in was hearts. Everything was primary colored hearts. As I got older it turned from hearts to flowers. Mauve and sage flowers. I always had a day-bed. This was great because when anyone spent the night, or every weekend when my sister slept in my room, we'd pull up the trundle and she had her own space. I'm not sure how much time I actually spent in my room as a young kid. I think we were usually outside.

Our backyard backed up to an open field. It was the source of entertainment for my friends and I. We'd pick blackberries and dig up strange palm-tree like plants to give to our mom's for mother's day. We'd come home in bug bites and sweat, but never complained.

We also had an awesome playset my dad made. We never even called it a playset, it was always "The Fort". We played in that thing for hours. Well, that is after it was fully built. My dad started it one summer, but then didn't finish it for well over a year. In all honesty, it could have been 6 months for all I know, but it felt like several years. It didn't really matter either way. As an un-finished fort, we'd walk along the beams high in the air. This was a very tall fort (our HOA was never very pleased) and the unfinished beams were well-over 10 feet high. Once again, how we never broke any bones I'll never know.

We also had the notorious swimming pool. No, we were not fortunate enough to have a nice in-ground swimming pool. But we didn't care. We had the small baby pools with the whales and turtles decorating the plastic lining. We'd swim for HOURS! I'm not sure we ever left the swimming pool in the summer. Well, maybe at night to play flashlight tag. Another great about my house. It was the perfect house to play flashlight tag! I can still remember getting my mom and dad out there and playing for hours.

As I got older, my house became a pain. Most of my friends moved away by mid-high school and I was all by myself there. It wouldn't have been so bad, but our neighborhood was 20 minutes from our high school. And I didn't turn 16 until my junior year and didn't get a car until that Christmas. This meant I was a pain to pickup or take home. Either my mom chauffeured me around or friends had to make the 20-minute hike! When I finally got a car, I did A LOT of driving!!!

Looking back, I had so many wonderful memories in that house. Most are from when I was much younger. The older I got, the more I saw the ugly things in my parents marriage. Easter my junior year we moved out. My mom left my dad and we moved into an apartment around the corner from the school. This was much more convenient, especially since I had just totaled the car I'd gotten a few months before.

We stayed in the apartment until I graduated. At that point my parents had gotten back together and I moved back into the brown house for a few short months. Once I moved out into an apartment of my own, I never moved home again.

Even after all the hard times, it was still such a good home. I met 3 of my closest childhood friends living in that house. Two, which are both getting married in the next month and the other who's more like a sister to me than anything.

Now that you know where I grew up, it's your turn...head over to Mary at Owlhaven's for more information!

Thursday, July 19, 2007

Our Sweet B is going back in

Here are the updates on B. Please keep this sweet boy in your prayers, he's already endured so much. For those who don't know what he's already gone through, read these first:

B #1

B #2

B #3

B #4

Here's the latest since B's last surgery:

B has been out of surgery for a while, and just woke up about 30 minutes ago. The surgery was about an hour longer than expected b/c they had some trouble with his anesthesia, but the overall result was very good.

He's still on oxygen and wheezing so they're going to be giving him a breathing treatment soon. She said that he did ask for his puppy, but his voice is just a whisper b/c of the tubes they had down him. Tomorrow they're going to try to start a liquid diet and over the next few days try to get him to start eating.

Because of his reaction to the reflux meds he was on, they can't give him a whole lot for pain. He's on Tylenol w/codeine and morphine when he's awake. He has 5 incisions in his tummy and is pretty sore.

I talked to D this afternoon...B hasn't made any progress today. They were hoping he would be on liquids today, but everytime they take him off the oxygen his heart rate goes up really high. As soon as he can get his oxygen levels regulated on his own, he can start on liquids then proceed to solids. She said that he hasn't had anything to eat in about 48 hours, so they have to limit his pain meds since his stomach is empty. He's in a lot of pain, but thankfully he sleeps a lot so he doesn't have to feel it all day. The dr wants him to walk 3 times a day, and they tried to take a walk today, but he was in too much pain. They'll try again tomorrow. She's thankful that the surgery went well and he hasn't had any major complications though. Stable with no progress is better than a setback. She said to tell everyone hello and thanks for all the prayers.

From D....
B's heart rate won't come down and stay down. Its been around 200 since yesterday which is about double what it should be. He has also been running a temperture around 102. He's also in a lot a pain and refuses to take anything by mouth (its been 2 1/2 days since hes had solid food, which is milk for him) so we can't move forward until he does. We can't give him more pain meds other than the morphine and we can't test out his new feeding tube. Right now they are about to change his IV since the one he has now is not working properly and his hand and arm is swollen. Today I am praying for a much better day . I am so sorry to be such a downer but I am so tired, frustrated, and I hurt for my baby, he is in so much pain. I just really needed to let this out. Thanks so much for listening and for being here for us. Hopeully B will feel much better today. Again I thank you for ALL of your prayers and support!

D just called and said that B will have another procedure at 1pm. Since he hasn't eaten for over 3 days, and isn't looking well, they're going to feed him through his veins. They run a line through the vein right on top of his heart and it will stay there until he can start eating on his own. She's very worried since it's so close to his heart, his heart rate has been very high for a while now, and he already has heart complications. PLEASE say a prayer for him around 1pm.

I'm asking all you prayer warriors out there...please say a prayer. B is such a delight and our playgroup misses him and his mommy sooo much. We are so ready to have our happy little B hack!

Saturday, July 14, 2007

A Photo Session

So...I've been putting off getting JD's pictures done for a while now. He's a boy and he's busy - he has NO time for picture taking. Until yesterday. I tortured him and made him sit through a photo session. Oh...and worth it? It was. It's not everyday you get good pictures of your little one, I mean, not good fully-dressed and cleaned up pictures of your little one!

Here are the pictures I walked away with after our little session:

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What a grin...

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A Sweet Little Pose

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As the photographer said, "I think he knows he's pretty cool..."

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A total "JD" face

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playing around

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Mommy and Me

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I'm so excited...I get to play after this!

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Just the two of us for a bit longer...

Thursday, July 12, 2007

One more...on B

B is going in for another surgery...please keep the prayers coming

B will have his surgery at Texas Children's Hospital on Tuesday July 17th. He will remain in the hospital for about 4 days. The doctor told me today that the surgery will take about 2 hours. I almost fell to the floor when he told me this. This is B's 3rd surgery since Oct. of last year and none of them came close to taking this long. I mean what am I going to do for 2 hours besides cry my eyeballs out. I am so sorry to be venting like this but I have so many emotions going on right now.

Any way the surgery is 2 hrs b/c the surgeon said its best to do all three procedures so that B won't have to go back for surgery. He will have the G button (tube placed in his stomach), his gall stone removed and the fundoplacation (wrapping the top part of his stomach around his esophagus) since he is having allergic reactions to the medication and to stop his coughing and vomiting long enough for his esophagus to heal so that he will feel more comfortable eating. I am praying so hard that this will give B the break he needs. By the time he gets out of the hospital we will be moving into our new house. I wish the timing was better but this is how my life has played out. It feels like its going to be forever b/4 I can see you all again.

Quick Update

I sooooo should be working, but an update is needed. Life has been busier than usual and I've had to take some time off. I have a feeling this time-off will continue until I get more done around here.

This post will mostly be dedicated to JD. We have almost hit the 2-1/2 mark, and right now we are at a very good place. Both JD and I. This goes out to all of my friends with two year olds, especially 2 year old boys. There are hard days ahead. Notice I said "hard" not bad. The 25 to 29 month stretch with JD has been the hardest so far. I have no doubt it will get harder in a few more months. That being said, we've hit a smooth patch. And it's nice - no, it's more than that, it's LOVELY!

I think the change is partly due to his ability to communicate and understand. It's funny, now that he can express himself a little better and also understand me - things are a lot easier!!

Some of my favorite things at the moment:

- The random "I love yous". He'll be walking through the house and just out of no where, "I wuv you mommy!" heart melts.

- He's so sweet in the morning. I love going into his room and seeing that big smile. The first thing he says is, "Mommy, daddy at work?" We then talk a second before I take him out of bed. About halfway through his diaper change he says, "Good morning mommy!" I LOVE it!!!

- He strokes my hair and says, "I wike your hair"3

- He has an obsession with the phrase, "Touch it!" Now anytime he sees anything he likes (spiders, dirt, worms, babies) he tells me to "touch it" which is kinda awkward when he's referring to a lady holding a baby!

- He's very into wiping off your kisses so we've made a joke about this. Now when he kisses us we make a big spectacle about wiping them off. He laughs hysterically. It's not as funny when he kisses someone else and they don't react the same way because he then says, "Spit!" Meaning - spit out the kiss.

- He always asks, "Mommy, you cold?" If I say yes he gets me a blanket, if I say no he says, "I not cold either". It's so funny.

- He talks. He talks all the time. Sometimes he talks too much.

- He loves Fruit Loops - pronounced Fwoot Woops

- He loves his baby sister so much already! Some of the cute things he does are:
* randomly kisses my belly
* out of no where asks, "Where's Kenzie (short for MacKenzie)?"
* the other day he brought me a balloon and colored a face on it, he smiled and said, "It's Kenzie" and then hugged and kissed it.
* I put his hand on my belly while she was kicking and he said, "Poke it mommy"

Well, that's about it for now. I REALLY need to get some work done so I can go to bed at a decent hour. I'm taking JD in for pictures tomorrow. Promise to post those soon...