Tuesday, June 30, 2009

Too much cuteness

Today we had some visitors. Emily and Tausha came over with Justin and Sam. And Kristi came over to drop off a blankie she was helping me with, and she brought Carter. 4 little angel boys in one room. We had some serious overflowing cuteness. I look at all of them together and I think, how can anyone terminate this. We were saying they should do away with the testing, because it is so inaccurate. Or, they could just give the moms this cute pic when they find out their having a downs baby.
Of course as always I feel a little sad that all these cute babies are sitting up checking each other out and making cute noises, and I have to hold my 3 year old up in my lap so he's sitting up. And he could care less that they are around. It truly is sad, and although I try not to dwell on it, its hard to think this is were he should be. How can a person live with themselves after they've done this to a child?
He was getting a little cranky after a while, I think because he kept tipping over and we had to sit him back up. He's like, enough already.

Sunday, June 28, 2009

The week begins

(New update, I had to change the transformers part. I guess I'm giving away to much to people that havent seen it. Just know though that it is not the end of the movie. Not at all)

First a little update. We went and saw Transformers today. My boys have been dying since it came out. Ya know, its based off of action figures, so why do they have to put the swearing in? My boys ignored it, they were more interested in the battles. Did I ever think I would cry in Transformers? Not until my autistic son (who LOVES transformers) cried his eyes out when one of the transformers died. Didn't think I needed the tissue box for this one. Then we went to a picnic for our niece that is moving to Florida with her new hubby. He is in the Air Force so their going to a base.
Jax is slowly getting better. He is now not fussy at all unless I mess with his tube. We are still trying to get into a routine of when to do the flushes and how to best do it. We went and bought some big pads, after we learned that a towel underneath doesn't hold 500 cc's of fluid.
Oops. We'll learn as we go, just like everything else.
Again I'm posting the new blankie video. I'm going to post it on Youtube. I added some pics to it and its finally done.

Also, another reminder. Sorry if you've seen this, I know a lot of people don't check blogs on the weekend so I'm reposting. Jax fundraiser were you can win some great stuff.
Mama Monkmee

And his car magnet you can get for 5 bucks.

Saturday, June 27, 2009

New blankie video

Here is the blankie video I've been working on. I still need a few pics. If you haven't sent me a blankie pic yet, email it to me. I also need some pics of your kids in the hospital, and one cute one of them for the end. Plus if anyone knows how to post a one true media on here so you don't have to click on it and go to another screen, I can't get it to work. So help me computer friends.

View this montage created at One True Media
Jaxsons blankies for babes

Also, this mommy that found Jax and fell in love with him is doing a fundraiser for him. She even made a button. You can win some great prizes so go check it out.

Mama Monkmee

She also made these car magnets. I just love them. They are 5 dollars. Let me know if you would like one.

Friday, June 26, 2009

Jax new button

Kind of a blurry pic of Jax, but the kid doesn't hold still long enough for me to take his picture. Some people have asked, but we still haven't heard anything from Boston yet. I emailed my hemo doc today to check in. No word yet.
Today we tried to get some stuff done. We found out that Ray can't get financial aid yet because he hasn't made sufficient progress from fall of 2005, spring of 2006. I just laughed. Fall of 2005 was when Jax was born, it was daddy's first time in college, of course we didn't know anything about Jax before he was born. But he had about a month left of school when Jax was born, so he had to quit that last month because Jax was in the NICU. Then he signed up for spring, and then Jax went into the hospital again and stayed there for 4 months. So he didn't even get started that semester. The good thing is we can appeal this, get Jax medical records and a letter from his doctor and they should wipe the insufficient progress off and we can get aid.
We went to daddy's softball game tonight, and as soon as we got there dark clouds moved in and the wind kicked up. Tanner had a fit. An autistic child in that weather is bad, thats one of his biggest fears. And when he saw lightening, the screaming started. I got him and Jax to the car just in time because the rain started, and the wind actually knocked a tree into a house. Ray said he could hear Tanner screaming from the fields. Well they canceled the game, thank goodness, I say never risk lightening.
Here is a pic of Jax new button. Interesting huh? Its called a chait trapdoor.

Its kind of blurry (yah, my camera is cheap) but if you look on his left leg you can see the 2 inch scar from his cutdown line. It still has stitches in it.

This is the wierdest piece. The extension. The piece that fits into his button is actually metal.

He is not near as fussy as he has been. But man you touch his belly and he jumps a mile. We are going to give it some more time and see if that pain goes away. He still has open sores under the button so when I change the dressing he screams, hopefully it will get better with time. We are still watching for signs of infection, if nothing in the next couple of days, we should be in the clear, wahoo.

Thursday, June 25, 2009

A big thanks

First, let me say what happened at the surgeons office. He pulled off the dressing that held the tube in place. Like you saw, it was soiled with stool. He walked down and talked to the radiologist to see if we could just put the button in. We could put a new dressing down, but it would be soiled again in a day, so 5 more weeks of that would get old. The radiologist was hesitant, if it hasn't healed to the skin, stool could leak into the abdomen and then we are talking sepsis and emergency surgery. Our surgeon didn't think it was likely, so we went ahead and put the button in. We have to watch him for fevers and other signs of infection in the next few days. I will show you tomorrow the button, and what we do to flush it, its quite interesting. I've never seen this before and I'm sure you haven't either.
But first I have to give a big thanks to my blog world friends. I feel like I've been friends with most of you for life. I few I've met, and one day I'm going to buy an RV and travel the country visiting all of our friends. So thank you for your words of encouragement, and especially your prayers.
Thanks to Lily and her mom for dinner. And to our friend Barb for dinner. And thanks to Carter's mom for dinner tonight. And thanks ahead of time to Emily and Tausha, who are coming over on Tuesday.
Thanks to Michelle, who always offers to help, and is letting us come up to her house to visit to get away and let the boys run. Thanks to Melissa, who also always has kind words, and I can tell, even through the computer, that you have a spunky spirit. Thanks to Shelly, who had dinner sent to us from a whole other state, I told my friend about that in the store, and she cried. Thanks to Phenny and his mommy, who give me my fix of those big blue eyes and curly hair.Thanks to Alicia, who's Gavin has the same brain injury as Jax, and we have so much in common its scary. How I want to get to Michigan some day to meet you and Gavin, who is Jax soul brother. And finally, thanks to Heather, who I actually got to meet her and sweet Zoey. Hopefully someday we will be neighbors, and I love your family and especially you so much. If I forgot someone I'm so sorry, everyone has been so great.
As I tried flushing this tube for the first time. It was scary, I was basically winging it. No one really has a lot of experience with these, so its frustrating not knowing. He still has so much pain around that site. So I'm messing with the tube and he is screaming. And then when I finish that I stick him in the leg to give him his shot he gets twice a day. Why do I do this stuff to my baby? Does he really deserve it? Maybe I should have let him go when he had the brain injury, or in January 07 when he went into status and we almost lost him then. How do I know when its the right time? Sometimes I wonder if everything he needs done is all worth it to him. He's so small and so fragile. I just felt bad tonight when I had to poke my baby that was already upset, it makes me sad..

Catching up

I didn't get to post yesterday because I was running like a madwomen to get stuff done that has been neglected. (Needless to say the house still hasn't been touched) And it doesn't help when you have one car right now, so I was up at the crack of dawn taking daddy to work, pick daddy up, take daddy to school, pick daddy up from school.

I've been frantically working on blankies, because I've gotten behind on them, if you have one ordered, I promise its being done.
Yesterday he had another pretty good day. Still quite cranky, and doesn't like to be held. I think it hurts to be held. While he was in a pretty good mood I tried to get some pics. He did his typical covering his eyes, pulling out the cannula, and definitly not looking at the camera. I guess I can't blame that last one on him, since his vision is quite poor.

We got dinner from another friend last night, it was delicious. Man I eat better when I don't cook, maybe because spagetti and taco's gets old after a while.

I was hoping we were getting better, but last night he was up most of the night, crying. Urgh. I'm so tired I can't see straight, plus, then getting up to take daddy to work. Am I making you tired yet?

We go see the surgeon today, I hope he has some brillliant idea. Not getting my hopes up though. I would love if he would just put the button in, but I think it has to heal first. We'll see.

Tuesday, June 23, 2009

An ok day

Jax had a little better day today. Didn't wake up screaming last night. I had to make a few trips for beeping monitors, but thats nothing new. He still needed pain meds pretty regularly today. I had to change his dressing twice. Tonight when I changed it you can clearly see were the skin is breaking down around the hole. Also, half of its covered by a dressing I can't remove. I hate to see the breakdown under there, he's going to get an infection just from that. We are going back to the ped tomorrow and the surgeon on Thursday. He may take the whole dressing off, heck, he may even say to just go ahead and put the button in. Hopefully that will help. If the button is going to leak like this I don't want it. Its not like a leaky g-tube, this is stool that leaks out. (Sorry for the grossness. Don't look at this next pic if your grossed out.)

Tonight Lily and her mom brought us dinner. She was very nervous at first around all of Jax tubes. She didn't want to get to close. But after a few minutes she warmed right up. She even posed for a couple of pics for me. She insisted on taking a pic of us. Sorry Lily, I'm not posting it, I look way to fat.

Thank's so much for dinner, its a huge burden off me right now. (Maybe now I can clean my house a little)

Monday, June 22, 2009

If your tired of my whining, click off now.

I took Jax to his ped this morning. My main concerns were 1. He's been extremely pale, and dusky when he cries. 2. I noticed last night that stool is leaking underneath the bandage. 3. His extreme crankiness and screaming in pain fits he has.

She was going to call the surgeon, but she ordered a bunch of test first so she could pass on the info. They did an x-ray of his belly and chest. Because of the blue spells and his heart murmer is louder. They did a CBC to check his white count. That would help if he has an infection. His white count was ok, and she didn't see anything on the x-rays. His heart is a little bigger, so we'll have to watch that.

The surgeon said we needed to get a CT of his belly to look for abcesses. He said leakage is normal (thanks for telling me) so I had to run up to the hospital after I left her office to get the CT. The radiologist said he didn't see any abcesses, so I walked up to the surgery clinic to see how to change his dressing. The nurse also thought he looked pale. We changed the dressing. There was a little piece of gauze that had been sutured in, but it was soaked with stool so they cut the suture and pulled it out. We are watching him closely. We can't figure out why he is in so much pain, you brush your finger against his belly and he screams. But he has no signs of infection yet, so we watch. Great.
This is when he fell asleep on the futon after I had to put him down and walk away to keep from losing my mind. He'd been screaming for an hour.

The face of Jax these days.

The new huge dressing.

Why does it feel like things go great for a while and then God piles everything on you at once? I know they say he doesn't give you more than you can handle but I beg to differ. We only have one car right now. Rays motorcycle is having problems, my dad can fix it but its finding time for my dad to come over. Then it needs to be inspected and registered. Our other car needs to be registered but we thought we had some time because Ray rides his bike in the summer, but now thats out. The other car needs a battery, a windshield, and needs to be registered. How am I going to pay for all this stuff, if I take him to work I have to take him at 6 in the morning. And he has school on Mondays and Wednsdays, how is he going to get there? He is not quiting school. He's quit three times because every time he starts something happens to Jax and the whole world falls apart. I am about at nervous breakdown level. I've had a few people offer to bring dinner. I usually say no, I don't like to be a burden, but after the day I had today, I think I will give in and let people help. I can't afford fast food every night.

Sorry for all my whiny posts.

Sunday, June 21, 2009

Shh, he's finally sleeping

I'm writing this post while everyone is asleep because I have been up with a screaming baby for the last hour. I finally had to do the put the baby down and walk away thing. I think he has finally fallen asleep on the futon in our computer room. I haven't slept for the last four nights. I don't know what his problem is, he's never had pain like this with other surgeries, if thats even what the problem is. He still drops his sats when he cries and he drops the second the oxygen is out of his nose, so his alarm is going off all night long. I think tonight I'm going to put a piece of tegaderm over his nose to keep the cannula in. (Is that mean?)
I really hope his follow up with our ped tomorrow is productive, I'm going crazy. (Besides being super cranky)
I found out in the hospital that the supplies I will need for his new tube are not carried by our homecare company. I have to go through a different supply company. Someone else to have on my phone list. I had also heard they weren't covered by my insurance, but they do all colostomy supplies so how can that not be covered. I am going to call my case manager tomorrow and let her do all the dirty work for me to find out whats covered.

Oh, and Happy Fathers day to my dad, the guy that can do just about anything. Sing, play music, draw, fix things. If you ever need anything, he's the man.
And to my hubby, thats been the rock through all of our problems. Bringing us closer together instead of tearing us apart as we deal with all of our stresses. I love you more than anything.
The holidays seem to take the back burner nowdays, I still have birthday presents I need to get out, so I totally forgot Fathers day was today.
Thanks to all my friends for your support and kind words. And for loving my baby that you've never even met.

Friday, June 19, 2009

Home sweet home

We are home tonight. Yeah. He is doing ok, still very tender and cranky. And his belly is still distended. A new problem that may be SVC or heart related. When he gets mad his sats plummet and he turns very blue. We are going to keep a close eye on that and discuss it Monday with our Ped.
The meeting with our palliative care team went great. I've known them for a while because they've been following Jax. It consists of a doctor, a nurse practitioner, social worker, nurse and a chaplin. The chaplin I've only seen a couple of times because he is a very busy man. But he can't come to our meetings anymore. He knows how to make everyone cry. He is so close to God and he tells me things about myself that I never knew. The plan for us is just to sit down and talk to the boys and get their feel for life. Let them know that Jax may not be around for as long as we'd like, and get their feelings and frustrations out. We are going to try to get them in a sibs class at the hospital for siblings of sick kids. I think with Jax I'm just so afraid of how devastated the other boys would be. We plan to meet again soon.
Just chillin his his bed.
His battle wounds this time around.
Dressed and ready to go.
One last snuggle from a close friend.

I will post a pic of Jax cutdown line tomorrow, I don't want to undress it tonight. I knew they had to dig to find the vein, but when they took the dressing off to pull the line, he had a 2 inch incision with stitches above the line. Whoa, I wasn't expecting that. They really had a hard time getting that line, and had to make an incision to dig a vein out. Yikes.

I have a great story to end on though. We got dinner delivered to us from Texas. Yes, Texas. Arabella's mom (who, by the way is still in the hospital with Arabella) found a friend that lived close to us, and recruited them to bring dinner to us. My heart was bursting. She's had her baby in the hospital for weeks and she thinks about dinner for my family in a whole other state. Can you believe it? Thanks Shelly, for dinner and for being a great friend.

Maybe home tonight!

Sorry I didn't post yesterday, daddy took the computer home. Jax has done ok. He is actually up to full feeds and tolerating it so-so. His belly is still distended but it hasn't gotten bigger overnight. He has been super cranky and needless to say last night was a very long night. They pulled out his foley this morning, and surgery will pull out his line in the next hour. Then we have to wait and make sure he pee's and his line was so deep and hard to get that the surgeons have to pull it out and we have to make sure that it doesn't bleed.

I am meeting with the palliative care team at 1:30 today. We thought it might be a good idea to get together and makes some plans since some new stuff has come to light.

When we found how hard it was to get a line in him (even a central line) that brought some disturbing questions. What if he gets really sick and needs multiple lines? We would bee pretty screwed. And if they are able to fix his SVC, can they get access for that? They talked about risk verses benefit of fixing it. There can be some catastrophic risks. And do we really want him to die in the OR, or on echmo with so many wires that we can't even see his body. I would much rather him go in my arms or at home. So we just need to talk about what the future holds for my little man. We don't want to have to make serious decisions in the heat of the moment. Its better to have plans.

I'm not giving up by any means. I'm still praying Boston has a brilliant new way to fix this that is not so risky. I wish they would hurry up and let us know.

Hopefully we will be home tonight, keeps those fingers crossed!

Wednesday, June 17, 2009

Hangin tough

We are on the floor. No more fevers. They've started feeds, very slow. 10 mls and hour and their staying there through the night. His stomach is distended so they don't want to rock the boat.
He hasn't done well pain wise this time. They've had a hard time controlling the pain, and when he is awake he is extremely agitated. When he gets mad he drops his sats and turns blue as blue. He is on 1 liter of oxygen, so not too bad. Carter had his last baseball game tonight so Jax hospital "babysitter" came up to sit with him so I could go.

Don't know what the plan is. Just increase feeds. They've flushed the cecostomy, but nothing has come out below yet. His bowels are still in shock from the surgery and not moving too well, so I'm trying not to freak out that its not working. Give it some time. We have a good attending. One that knows Jax well, and has also seen first hand how naughty he can be so she is not taking any chances. It makes life so much easier when you have a good doctor that you don't have to argue with.

I better get my but in bed, I know we won't likely be getting much sleep around here.

Surgery pics

Jax had a pretty good night. They did an x-ray of his belly to make sure there was no fluid or air in his abdomen. They started antibiotics for the fever. This morning they took him off the high flow oxygen and he is on 2 liters now. The plan is to go to the floor later today. If you want to come up I will be here pretty much all day. Right now we are in PICU bed 31. Of course I don't know what our room number will be when we move. You can call up and find out. Thanks for the prayers, I know thats why he does so well.
Before surgery.
Right after surgery.

His cecostomy (chest tube) the button will be put in after six weeks.

Right after they extubated him. You can see the blood oozing from his line.

Tuesday, June 16, 2009

night update.

I'm home for the night, and I totally left my camera in Jax bed. So sorry I can't post pics tonight. They extubated him at 5:00. He did great for a while, but I was a little hesitant to leave him. He is breathing a little hard, he is on high flow oxygen right now. He has a fever, it looks like he may be getting a little lump on his belly, so surgery is going to come by and take a peek. His central line is oozing blood like crazy, they've already had to change the dressing twice. And were his blood pressure cuff was on his arm he has red lines like broken blood vessels. We are not quite sure what is going on. He has been off his lovenox since yesterday morning so I would be more concerned for clotting than bleeding. They've sent off some labs so we'll see what his platelets are. I'm hoping he doesn't have an infection in his belly and that he can remain off the vent. I will be calling up a lot to make sure everything is ok and I don't have to go back up tonight. Keep those prayers coming, he is being the stinker he is known to be.

3rd update

Jax is doing good. He is still intubated, and they plan to put in a foley catheter because the central line is down there and they don't want to contaminate that. The tube is different than I was told it was going to be. Its not the button yet, its a tube, Its actually the same tube they use for a chest tube. So when I saw that I was like, what the heck. He will keep that one in for six weeks, then in the specials lab they will put the button in. Its different than a g-tube button, this one they don't want to get pulled out. If it gets pulled out stool can leak in the abdomen and that would be bad. This tube is huge and will be difficult to keep out of the way. I will post some pics tonight. I will go home and sleep since he is in PICU and I can't sleep in his room. I don't know when they plan to extubate, I haven't heard anything yet.

2nd update

Done, after the line finally got in, the surgery only took 45 minutes.He said he had to do a cutdown femoral line because he couldn't even access the femoral. Yikes. He is headed to PICU now intubated. I'll post pics as soon as i can. Thanks for your prayers.

1st update

He's been back for two hours in for a one hour procedure. They finally called out to tell me that they were just getting started! I took them 2 hours to get a line in. They finally got a femoral, which suck because its right in his crotch, but thats what we've had lately, thats all that he has left. It will be hopefully about an hour from now. No more bumps or delays please.

He's in

He just went back about 15 mins ago. A PICU bed is reserved. They are planning on a central line and leaving him intubated. Aways plan for the worst and expect the best, right.

Monday, June 15, 2009

Surgery tomorrow

We will be leaving bright and early tomorrow for the house on the hill. Check in is at 7:00 am. I am going to try to take my computer with me so I can update as things happen. The surgery itself is only about an hour, but getting a line in him is what can take some time. And also if he extubates or not. We'll either go to PICU or surgical unit. Please keep my munchkin in your prayers tonight. No surgery is easy for him. I'm super paraniod now after reading about little Kayleigh, who had a g-tube and nissen and came out totally brain dead. Ok, not thinking about that. But his SVC problems could cause complications, and his surgeon is a little worried about that. I will let you know as things unfold. Thanks everyone.

Sunday, June 14, 2009

Carter and Carter

Carter and his teacher. She was such a good teacher and we will all miss her. Carter wanted to know if he could have her next year. She keeps those kids mind's stimulated constantly with fun activities. Carter started school two months late because we moved and the school he came from hadn't started yet. And the school we went to they put them on a track that had already started. So he was two months behind everyone. We always knew he was bright but she had him totally caught up and when school ended he was reading on a 1st grade level. Thank you so much Mrs. Nelson, we love you.

Carter and his mommy came over. She is helping me with blankies so she brought me some that were finished. This kid has so many great face's. He is such a ham. Besides his beautiful smile. Check it out.

He was loving Jax. He wanted him to play. I really hate that Jax lays on the floor and his friends want to play. It really makes me sad. I sit Jax up but he still doesn't interact with other people.

Its been a super busy weekend. Our aunt is here from California for my nieces wedding today. And Ray is taking the pics for the wedding. Aunt Doreen is leaving tonight. (We are all planning on squeezing in her bags)

Thursday, June 11, 2009

Aww Friday

Man, its been an absolutely exhausting week. Besides the emotional rollercoaster I've been on with Jax, its the boys last week of school. I swear I've been there everyday this week. For plays, parties, and Carters kindergarten graduation today. I will post pics of that tomorrow. They did the cutest program about space, thats what they've been learning about the last couple of weeks. I have mixed feelings about school being out. On one hand, I don't have to get them up, fight them to get ready, worry about homework, etc. But on the other hand, they will be home ALL DAY LONG. Yikes, I need to think of some serious things to keep them busy.


I've been emailing our hemo doc thats been helping us with Jax. He's been fantastic. Gathering all his scans and sending them all over, I'm grateful for his help. However, I'm feeling defeated right now. I have to more places I'm waiting to hear back from, but if no one is willing to help I don't know what we'll do. His siezures have been increasing from this. His last EEG looked like crap. But his neuro has already made it pretty clear that he doesn't know what else to do for him. He told us to schedule the next available appointment, which is in July, and he would fit us in sooner. Well I made the appointment, and then I got a voicemail from his secretary saying that the July appointment works for him. So much for getting us in sooner.

I think all of this is just telling me I need to move out of state soon. We need to get Jax to a decent childrens hospital. This one is supposed to be great, but we've had nothing but problems. And this hospital fell of the top ten list and is not even in the top twenty anymore. We were trying to get daddy through school first. California is an expensive place to live. And I want to live there comfortably. He is in school now, but he's looking into police academy's there that will pay him to go through the academy. So hopefully we can get out of here soon.

Tonight I was putting Jax jammies on, he was so cranky, I could tell he was tired. When I came out with his meds, this is what I found. Fast asleep on the family room floor.

My precious baby.

Wednesday, June 10, 2009

Jaxson, Jaxson

First I wanted to throw my two sense into this whole April Rose thing. If you didn't know April Rose was an unborn baby that supposidly had Trisomy 13 and holoprencephaly(spelling?). And now it seems the whole thing was made up. I don't know how people know for sure it was made up but the site is gone. I don't want to give this women any more press, but this upsets me for two reasons. First, we sent this lady a blankie for her baby, and if you look closely at the (fake) baby pic, you'll see it in the background, its polka dots. Julie made this blankie and wrote a special note for this lady, you see, if you didn't know, Julie is Arianna's mom. And Arianna is Jax best friend, and she also has Trisomy 13.

Trisomy 13 is usually fatal, Arianna will be celebrating her 3rd birthday soon, and Julie wrote this heartfelt note to this lady, and we never heard back, now we know why. You don't joke about things like this. We celebrate every day we have Arianna, and it just makes me sick. Send the damn blankie back please. ( Sorry) And Julie asked me if the pic of the baby looked like Arianna, they have a specific look, and I was like, not really. Again, now we know why. This lady needs some serious help.

I have some cute pics and blankies to post, but I didn't want to do it on my whiny blog yesterday. We got our afghan in the mail. Its so cute, thanks Emmalee and mommy from the T 21 traveling afghan.

Here are a couple of cute blankie kids. I havent' posted them on the blankie blog yet. I'll do that tonight when I have another 5 seconds to sit.

I have contacted another doctor in Stanford. I emailed Libby's mom, she said no one will touch Libby except this guy. He is going to take all of her collaterals and unifocalize them. I'm really hoping he can help us. Thats why everyone is afraid of jax is his collaterals. this guy specializes in them. Keep those fingers crossed.
I'm so glad my sweet baby is oblivious to all of this. He has no idea how sick he is, he just goes on with life in his sweet manor.

Oh, and throw some good vibes our daddy's way. He is starting school tonight. He will be going 4 nights a week plus an internet class. He is going to be one tired daddy.

Tuesday, June 9, 2009

Done, just done

I called the NP in LA just to see if she had recieved Jax info yet. She said they had recieved it and Dr. Starnes had already looked it over. I was like wow, maybe we'll get some answers pretty fast. Yeah, not the answers we want. He said he didn't think he could fix it surgically. That he didn't think it could be bypassed. She said he didn't elaborate, thats all he said. What the heck does that mean? Is that like when they said, his brain is in status and we can't fix that so he'll eventually die? Are they saying they just can't fix it, once again, he's to complicated? I need some answers people, I can't take the vague, I need the whole explanation. Are they saying there are just to many collaterals? Probably, besides the collaterals around the SVC, he has collaterals around both of his main veins coming back from his arms (I'm so angry right now I can't even think of the name of those veins.) He can't have a picc line in either of his arms anymore because his chest is just a spagetti bowl of veins, everything has clotted off before we knew he had the antiphospholipid antibody syndrome.
I don't know what this means, I know he is going to call our doc, hopefully he goes into more detail with him. And I know we are still waiting to hear from Boston, and Boston is the best, but right now I'm not getting my hopes up.
I'm just tired. I'm tired of having a sick baby. I'm tired of surgeries, of oxygen, of feeding pumps. I'm tired of syndromes, of cecostomies, of hospitals. I'm tired of seizures, of shots, of meds. I'm tired of doctors, of "can't", and I'm tired of life.

I'm just tired.

Ya think its time to refill that prozac yet?

Monday, June 8, 2009

Happy Birthday Mondo!

First of all let me clarify. For those of you who don't know, Mondo is a nickname that he's had since birth, his name is Raymond. But the only ones that call him that are teachers.

I can't believe my oldest is 11 today. My smart, sensitive one that looks like me and has my personality. Its funny how much he is like me, afraid to leave mom to go to sleepovers, afraid to ride rollercoasters (ya, I was about 16 before I rode the big ones.)
Does love to rock climb, loves anything military. Its kind of scary to think about, but I think one day we will have a soldier. He can tell you anything about Pearl Harbor,he really wants to go there to visit.

Its been the roughest for him since Jax was born. He was there when his baby brother was born and even helped cut his cord. Then his brother was whisked away from him. They wouldn't let him in the nursery but there was a window he could look through. When he was transfered to PCMC's NICU however, there was no window and they wouldn't let kids in for RSV season. He was heartbroken, he would ask everyday. "Isn't there even a window?".
He continues to ask me if Jax is going to die, and he says when we die, he gets Jax. I don't really want to think that far ahead but ok.
When Jax spent 4 months in the hospital, Mondo really suffered. I got him into counseling, because he was so unhappy and even talked about hurting himself. He always seems to get the short end of the stick. Every time we are supposed to do something for him, Jax has to change the plans. Thats why we wouldn't do Jax surgery this past Friday. We went to the air show for Mondo and made sure we were home for his birthday.

My little man has had to grow up way to fast. But he is the most compasionate person I know. He can point out a downs person from far away, and he loves people with special needs or people who are different.

Happy Birthday baby!!