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.
Tuesday, June 30, 2009
Too much cuteness
Posted by Lacey at 9:29 PM 24 comments
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.
And his car magnet you can get for 5 bucks.
![](https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtygcoTFnLG7kxIP6GyjFv2eocQBV4WIREGJWMh1TZSw_hTIno2aEFMZ9v-aji0RP_mUau4MzvZ-qWUEeIt7ZmPEKAczt0hAYqwDLjzfUKVH3JCaTAJj5Yh9L9GKVQI014MtoBvU2gUyZU/s400/jax%5B1%5D.jpg)
Posted by Lacey at 10:34 PM 18 comments
Saturday, June 27, 2009
New blankie video
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.
She also made these car magnets. I just love them. They are 5 dollars. Let me know if you would like one.
![](https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjz5zkP93mU8xWTv3B2TKuTPdyz7GcMaPOakDSGTibBvaAiLNy3UG3eu53lwNmdnwJSZLuKR2z1PsBXHrS2AAxLrxA71JdJLiPd3wSKoAMqbQCNwf-fJzOzfilU1-24MNaQI-qvwJ_QX3fd/s400/jax%5B1%5D.jpg)
Posted by Lacey at 8:22 PM 17 comments
Friday, June 26, 2009
Jax new button
Posted by Lacey at 9:20 PM 13 comments
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..
Posted by Lacey at 10:30 PM 20 comments
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.
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.
Posted by Lacey at 9:07 AM 17 comments
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)
Posted by Lacey at 8:58 PM 21 comments
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.
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.
Posted by Lacey at 6:52 PM 34 comments
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.
Sigh..
Thanks to all my friends for your support and kind words. And for loving my baby that you've never even met.
Posted by Lacey at 8:08 AM 20 comments
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.
Posted by Lacey at 10:25 PM 20 comments
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!
Posted by Lacey at 10:12 AM 16 comments
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.
Posted by Lacey at 11:51 PM 20 comments
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.
Posted by Lacey at 9:32 AM 21 comments
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.
Posted by Lacey at 8:14 PM 21 comments
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.
Posted by Lacey at 2:25 PM 20 comments
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.
Posted by Lacey at 11:21 AM 9 comments
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.
Posted by Lacey at 10:39 AM 3 comments
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.
Posted by Lacey at 9:00 AM 9 comments
Monday, June 15, 2009
Surgery tomorrow
Posted by Lacey at 6:16 PM 31 comments
Sunday, June 14, 2009
Carter and Carter
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.
Posted by Lacey at 10:51 AM 7 comments
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.
Posted by Lacey at 10:19 PM 21 comments
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.
![](https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSCom6ZaR2TuymP_mk8VWb6KkR92kWkhkTCZEhY7gZas1dphiMOZyKFNoBX_7iNTqEb_Y9f4zCDTZDpOd-XyYXCiiEDI9MjRieNSsluq7ijPRrEmi93lgJhwSK3EWqi4VAN9wp8WD3v79K/s400/DSCN2793%5B2%5D.jpg)
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.
Posted by Lacey at 2:48 PM 32 comments
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?
Posted by Lacey at 10:13 AM 28 comments
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.
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!!
Posted by Lacey at 8:41 AM 23 comments