Blake's Coming Home!!!!!!!!!!!!!!!!!!!!!!!

They took him off his Os Thursday but they had to put him back on because he started to desat. So they tried again a few more times that evening and early Friday but he started to desat again. He lasts about 3 to 4 hours than just sorta starts dropping around 70. He'll look fine content and everything, but his sat just won't stay up there with out a little help. So they got him on wall Os and I get to take him home hopefully Monday, but it might be Tuesday if they can't get his take home oxygen and heart monitor ready. My insurance was picky about which company they could go through. Well actually my insurance doesn't cover home oxygen for babies just adults! They just had to negotiate the cost. My advocate didn't seem upset that he would need it. I guess she just has to call everyone that provides home oxygen and find the cheapest rate. I'm not sure if they got everything faxed in time. Considering my nurse found a fax # by Blake's bed while I was there it was around 7pm Friday. She asked the other nurse what it was. She told her it was the fax # for Proxair(home oxygen) and that they needed some info faxed over for Blake's oxygen. I was just so happy with both the nurses at that moment really! So they told me today not to get my hopes up for Monday. Knowing Kosair Hospital it will probably be Tuesday. I'm so excited and nervous and just everything! I've cleaned the house like a mad woman a couple times and then I decided to paint the kitchen and living room. I guess I'm like in this nesting stage preparing for Blake. I hope everyone is having a great weekend. I am! Well besides being a big ball of nerves every other minute, I'm good :)

The good news and the bad, bad, bad news

Good news Blakes G-tube went well for the past couple days he's seemed in a brighter spirit. news the surgeon couldn't preform laproscopy and had to make an incision to complete the nissen. So Blake now almost has a continuous scar theirs about an inch in between them, so that's a little worrisome especially if he's going to have to have another open heart surgery in the future. More Bad news Blake might have a blood clot in his left leg(just found out today) caused by the cath more than three weeks ago. We are waiting on an ultra sound. They also found blood in his urine when they changed him a few hours ago. His nurse has already collected some urine and now we're waiting on the results. His Doc feels that it's either going to be a kidney stone from taking his lasiks for his chronic lung diesease for well almost his whole life now or it will be a urinary trac infection. He doesn't have a fever though and really isn't all that cranky so I'm leaning more toward the stones. Sorta good news his resident feels we might be able to get him on wall oxygen soon, that would be the type I would take him home on, but she also feels he might need it for an extended period of time (she's talking many months to possible years!) Okay so I'm holding up okay I'm getting use to this roller coaster ride. Just to let everyone know Blakes little neighbor passed unfurtantly. I so wished I could report good news for her, it was that same evening. Well I'm sorry I haven't been keepin up on blogging.

Saving Babies

I'm at the hospital and as I type they are going to shock a baby externally. I can't remember what the name of the machine is called my brain doesn't function as well after midnight. But I'm sure everyone knows what I'm talking about. It's just so surreal. Since Blake's been admitted I've been here while 3 other children passed. I don't know how much longer I can do this!

Oh, I'm in the waiting room now I just got kicked out a minute ago. I wasn't sure if they where going to kick me out or not I didn't want to try to leave all the doctors where by the door and rushing in and out. I figured I was just as safe back with Blake in his little corner on the other side of the room. But alas the nurse asked me to leave which I gladly did with lab top in tow. Well I pray that everything goes smoothly for Blake's little roommate. I know she arrived just a few days ago.

Well while I'm here I'll give everyone an update on my sweet man Blake. Blakes going to get his G-tube(gastro tube a.k.a feeding tube) Wednesday. Well hopefully Wednesday that hasn't been confirmed. They never confirm the day or time til the day before. Even then its still subject to change. I'm nervous of this surgery after all they are going to be cutting holes into my sweet boy. I just hope it helps more than hurts. He has reflux really bad. He's not vomiting so much as just retching all the time and he constantly sounds congested. Especially after eating he's so raspy! So they'll give him a nissen(tighten the area where his esophagus meets his stomach) at the same time. Theirs an up side and a down side to this it will fix the reflux, but the down side is he won't be able to vomit EVER! Over time it might loosen and allow for some vomiting but this can take many years. The surgeon said possible when he's TEN or older! I hope everything goes smoothly. I'm still shock up after what happened after his cath. Well I'm signing off now. I pray for each of you and yours. And if you have a moment please give a little shout out for Blake's neighbor.

Here's Blake in his swing (He also has a glider) the nurses call the glider Blakes personal roller coaster!

I feel terrible

Well, I worked at our local Wal-Mart about 2 years ago for about 2 years. I worked in lawn and garden (I know nothing about gardening, I managed to bs my way through gardening questions). A young man also worked in lawn and garden. A very sweet, nice, and kind man. He's probably about 26 he also has Williams! Well he was and still is the door greater and also runs the register when cashiers, like I was needed breaks. I'll be honest I wasn't always nice to him :(. I was never rude to him in person but I do remember me and the other cashiers making comments that he could be somewhat annoying at times. I feel just awful.

I figured all this out when I went to the doctors today. She asked me about Blake and then she mentioned a young man at Wal-Mart had Williams Syndrome. I immediately knew who it was. I feel just awful but I also feel a little better though finding this information out. He's a great person!

I actually still talk to Erik every time I go to Wal-Mart. He knew Blake was in the hospital (Troy's anut works in Lawn and Garden, too) So yes I called lawn and garden when I got home and asked to speak to Erik. I didn't know how to ask such a question. We just started talking he really is easy to talk to. He asked about Blake I gave him an update and then told him he was dx about six weeks ago with WS Erik then told me that that ws extremely rare and that he also had WS. We talked for just a little while longer than he gave me his cell number and house number to call him or his mother with any questions I had(I told you he was sweet). I believe building a stronger friendship with this young man will help. This has been an interesting day!

-Here's a pic of my little men (I don't know how to make a slide show?)

Attempting to have a bit of a life, too. . .

Blakes doing better . He's attempting to PO(bottle feed) feed every other feeding the rest goes in his NG tube (nasal gastro). So I've started working out . . . a little, sorta, kinda! I went to the YMCA yesterday. I did weights and ran on this elliptical type machine(it's a mix between a stair stepper and elliptical). Then this morning I got real adventures and went to a spinning class at 6am. I went to see Blake after the Y each time but I didn't feel as guilty doing this. I think I need to do this to help keep my sanity! Don't take me the wrong way I'm not a health freak I joined the Y a few months before becoming pregger's I started out good going about 3 times a week but once I got pregnant I only 1 or 2 times a week and didn't do much else but walk especially toward the end. I know I could've did light weights but I kinda took advantage of the whole preggers thing and decided walking was good enough(I got out of a lot of stuff, poor Troy)! I also still need to lose 25Ibs of the 40Ibs I gained! I'll be alright if I only lose 15. 25 POUNDS that's like the size of a toddler or a medium sized dog I just don't think I can do it! A lot of people say that I don't look like I need to loose I'm usually sitting down so they don't realize I'm sitting on all of it! Hope everyone has a great day! I'm gonna go hold the reason I'm walking around with an extra 25 pounds :\

Much Better

Sorry I'm just now getting back to everyone. Friday was rough. We kept getting reports every 30 to 45 min that everything was going fine. Then Dr. Rectol came out and said everything went great and while he was showing us the video feed of Blake's narrowing someone yelled Dr. Recto come quick! It was the scariest time of my life. They extibated Blake and his throat collapsed so they had to intubate and then it slipped in his esophagus they had to give him chest compressions and intubate again! He also had hemothorax(I believe that's what it was called, this is air stuck between his chest wall and lungs. The Dr. had to stick needles in his sides and let the air out. All this took I believe around an hour we were down the hall in the viewing room. We could somewhat hear what was going on. Troy and I were listening terrified at the door til a nurse came by and ushered us back in. finally someone came and let us know he was stable. He had to be intubated Friday, Saturday, and around 1:30 yesterday he was put back on his nasal cannula. He looks much better and seems more content now then before surgery. The whole thing was just so scary. On a happier note I hope every one is having a great labor day. Troy and I did stop by his family reunion for a couple of hours before heading to the hospital so that was nice. Everyone got to see the pictures I have taken of Blake. Everyone thought he was adorable(of course)!

-Picture of Troy(daddy) and Blake