Love

This girl has to be wherever her brothers are!

Published with Blogger-droid v1.7.4

Alive and well

We are here, we are cozy in our hotel room. Even though we've been in hotel rooms many times, this seems different. I cant let Arina cry in her crib, because she'll bother the neighbors. So she's learning that if she cries mommy will get her out. Not something I want her learning. Thats going to be a bad habit to break and its super frustrating.
Jax had a rough night. He woke up a few times wretching, until I finally took his vent off. Then he slept until 9. He seems ok now, just a little more pale than normal. Not sure whats he's up to. Hopefully not more feeding problems.

I'm so proud of my boys. They worked their little buns of last weekend. They were such a big help. Even Tanner, who sometimes struggles, did so good.
I love my family, and even though its chaos right now, we are together, and thats all that matters!

Published with Blogger-droid v1.7.4

Bye bye house

This is my last post from this house. In about 10 minutes the computer is being unplugged and packed away.

I calmed down a bit last night, daddy is home, and things are moving. This morning I thought for sure we'd be able to be out tonight.

Bwahahahah, I don't know what I was thinking. With just me daddy, and the boys, things move very slowly. My nephew is coming over in the morning, and so we should be done by late morning. The buyers said it was ok that we are out tomorrow afternoon, but their realtor told me over and over how much they wanted to hurry in. So I hate to say that they may be moving into a not so spotless house. With only a couple days warning, it doesn't leave me much time!

We have a new plan that has my nerves calmed. Daddy can't miss any work this week, it is quarter end and month end, so he is just crazed! So we are moving everything into a storage unit here. The truck we are using today is free courtesy of the hubbys work! He will fly home Sunday to work this week. At the end of two weeks when he has Friday off again, he will fly here, and we will all drive down. This is great because I don't have to worry about insurance stuff right this second. One thing at a time for this frazzled momma please!

So I'll be here for another two weeks, in a hotel. I'm ok with that. Free cleaning, no utilities, and an indoor pool for the boys works for me!

Jax dental work almost got cancelled again. I can't believe how much people freak out with him. Even people at the childrens hospital are reluctant to work on him. I would think its easier with the trach, because he already has an airway. If they can't get him off the vent, you just leave it on. There is no intubating and extubating him. But they accidently scheduled him for the outpatient childrens hospital clinic. Even though its pediatric docs, they won't do him there because there is no PICU if he needs it. The main hospital had one opening next Friday, so we just need to make sure the dentist can do it that day. Keep your fingers crossed, he needs this done before we leave.

I'll have my laptop, but in case I can't get pictures downloaded, I am putting up some that I was going through last night. I'm putting together a picture album for my ped, and here are some good ones I found!

Carter, Mondo, Tanner

Look at my sweet little Tanner!

Jax first Christmas!

I'm taking a minute to sit and blog, to take my frustrations out on the keyboard, and because I haven't eaten all day and am starting to feel a bit shaky. So 5 minutes is needed.

Today I was told that I have to be out of my house Friday! Yes, a day and a half I have to be out. My realtor has been soooo terrible. I've been asking him for weeks what day to I have to be out. He never tells me, he tells me they hope to close this date or that. I thought I had 3 days to move out after closing. A lot of people are telling me there should have been a 72 hour clause in the paperwork. I blame myself a bit for not making sure that was done, but that's why we (severely over-)pay a realtor! I would have sold the house myself if I knew I was going to be doing all the work anyway. All he's done is take pictures, that's it. I have not seen him in person since those pictures were taken. We are reporting him to whoever it is we report realtors too. And if I could, I would take his commission away!

I called the buyers realtor myself and asked if we could be out Saturday. He said it was ok, but made sure to remind me over and over that they want to hurry and get in, and to call him as soon as we are out.

Add to that my hubby's clutch died in his car yesterday. We have a warranty, and they told us it was covered, and sent him away in a rental car. Then they call him and tell him this specific part is not covered, of course! So today, in my utter madness of the moving fiasco, have to find 800.00 to pay his car so he can get to and from work, since its an hour and a half away, and to the airport to get here.

I've calmed down just a bit, after deciding I'm not dealing with the insurance part of things quite yet. Now that I know that I have 30 days after the address is changed to get the new insurance, I'm not going to try and do that right now. We will stay in Utah for the week in a hotel, Jax has dental work at the hospital Tuesday, and it has to be done now. His front teeth are almost grinded down to the nerve, and that would make it an emergency.

I cried my eyes out to my pediatrician over the phone, after she told me that Jax has been the most rewarding patient she's ever had. That she loves me and admires me so much, and that she is going to continue to be our friends. Then she told me that she wants to donate something in Jax name. Equipment, or whatever we feel strongly about. I am trying to think of something that will make a difference. The PICU and her office is where he's spent the majority of the last 6 years, so I want to do something at one of those places. The lab did tell me they desperately need a light that finds veins. That might be a good one, since Jax has always been one of their most terrible pokes, it would be only fitting that something like that had his name on it!!

I had to take him in for labs and a weight today too, and I thought for sure I'd bawl the whole time I was there, but I just didn't have the time. I know I'll be in that office again before we leave, but I've been super teary today. What am I going to do without her? I love her so much. I can't even begin to tell you how much we've been through together. The late night conversations, holding hands at Jax bedside, and her being my psychologist many times. I love you Lisa, with all my heart!

Prayers is all I need for the next few days. Internet will probably be scarce, only on my phone, and if I can figure out why the Ipad is not picking up WIFI when it should.

Thank you my friends!

Playing in the sunshine

Jaxson is doing very well since his hospital stay. Our biggest thing is that he lost nearly 3 lbs during the whole ordeal. 3 lbs wouldn't be anything for you or me, but on a 25 lb almost 6 year old, its way too much. I about died when I saw the numbers on the scale, and my ped nearly died when she saw his little body. Because of his SVC syndrome making his face and neck puffy, its hard to see in pictures just how scrawny he is right now. He is tolerating the continuous peptiman jr in his J tube. We won't switch to G tube until we find out about fixing his nissen. The next aspiration episode may not be as easy for him to handle as this one was. Occasionally he will get cranky if his g-tube is clamped for too long, so I'll unclamp it and wrap a newborn diaper around the end to drain.

Its still really nice here, after a few days of rain, so I decided we needed a trip to the park. I was all excited to get Jax on their handicap swings. I had already decided that tubes can be taken off for a few minutes to get some sunshine and fun. I had plans to have Mondo take him down the slide, something he's never done before.

We waited patiently for the handicap swing to become available. People ignoring the handicap sign, and the obvious handicap child waiting.

I put him in and started pushing, and the little stinker does this.........


He was out cold! Without much swinging, and no trips down the slide! My plans were a bust!

Of course Arina had a grand ole time. This girl loves the swings!

Trying her hardest to get back up that slide, to no avail!

The buyers may close on the house on Thursday, which means we may close Friday or Monday. I'm getting that pit in my stomach. I'm not sure if its adventure, or fear. I've never in my life lived outside the Salt Lake valley. Its an adventure to me, but adventure has a different meaning with a child like Jax. My homecare company here wants me to find a nationwide homecare company that my new insurance covers, so I can leave their equipment here, and get equipment from the new company to take with us. The only company I can see that is nationwide is Apria, and I've had multiple people tell me not to use them. I'm not sure what to do. Not many companies I called do oxygen. CCS medical, and Edgepark, neither do oxygen. I don't want to get stuck with a company that is going to be hard to work with. I fight enough for the stuff Jax needs, I don't need any more.

My only reservation about moving was leaving my ped. And while its the only thing, its definitely one of the biggest! No one knows Jax like her, and it will take a while for anyone to learn him and how he ticks. And as much as I hate the hospital here, there are people that know Jax well. When we move, every hospital we go to will be brand new. No one will know Jax. No one will come in and say, "hey, there's my Jaxson". Oh man its a scary thing! Reassurance from people that have made a huge move with a medically fragile child is greatly appreciated!

I'm a nervous nelly right now!

Current princess stats!

First things first! I finally have a new post up on the blankie blog! Maybe I'm finally getting back in business over there! Yippee! The blankie blog is somewhat of a mess right now. The person that did my blog has disappeared, along with my background, and I am NOT a blog maker. So if someone wants to volunteer, we'd be super grateful!

Also, while Jax was in the hospital, I ran into an old co worker, who informed me she had a Down syndrome baby boy! I was super excited for her, but she is feeling like she doesn't know how to take care of him, or any resources. I helped her, but I also told her to give me her blog, and that I could introduce her to literally hundreds of families, all over the country! My blog is where I've met so many friends, even friends that live right near me were met online first. So please click here to go to her blog and make her feel welcome into this fantastic friendship! Her name is Ashley and her little guy is Brunton!

The princess had her two year check up on Friday. She weighs in at 20 lbs, and is right smack in the middle of the growth chart. Developmentally she is doing fantastic. The only thing my ped said is she might benefit from some speech therapy since she doesn't have any words yet. She has many signs. Please, thank you, daddy, mommy, baby, eat, more, play, all done, and milk.

She is still working on walking, but she will stand up against the couch and just take off all by herself. That girl is motivated!

She needs her vision checked, and hearing re checked, since my ped can't see in her ears at all! We are going to do an overnight oximetry, to see if she needs her sleep study repeated after her tonsils and adenoids came out. But really thats it. Her thyroids are still normal, so we are still med free with our princess. And it seems like her aspirating is getting better, because she only coughs when drinking thin juice.

And of course, she has the whole office wrapped around her little finger. Nobody wanted to be the one to give her 5 shots. Her flu shot, and catching her up on her immunizations. Even though she was immunized in Ukraine, they always redo them because sometimes those countries have old and expired shots.

Basically, she's doing fantastic!


*I have to say that I tried really hard to find a way to crop my fat baby belly out of this picture. But its impossible, and the picture is too cute of her not to post!

Some great things

Remember this?

Grab this Button!
Its where Jaxson got his Ipad after the whole scandal. Well his post is up on the blog, go read it, there was a surprise in there.

I found out that our dear friends, Joyce and Sarah, were responsible for Jax getting his Ipad, they donated and wanted the money to go to his.

I love Joyce so much, and how do I ever repay her? She made beautiful quilts for Arina and Jax, and now this!

I'm just glad that I had the opportunity to meet them both in person when they were in Utah for a quilt convention.

Thank you, thank you Joyce, I cannot say that enough. We love you so much!

Ipossible is so close to meeting their goal. If you haven't already, please consider making a small donation. Just click on the button above!

One more thing, my blog was nominated today for a best blog award. I'm touched! I know there are much bigger and more popular blogs, but if you have a second go vote for us please!

By Best Special Needs Blog

Home sweet home

Tonight my baby sleeps in his own bed.

His favorite mobile that has been singing to him since birth lulls him right to sleep.

This boy never ceases to amaze me. Sunday evening they started peptiman jr. A pre-digested formula, in hopes that we could get his gut to accept food. After we got to 15 mls, the wretching, crazy heart rate, started up again. I told the attending that came on Monday, that I wasn't holding my breath that pushing his gut was going to make it work! Yesterday, she promised that if by today, he wasn't any farther, we'd call his GI and get her opinion. They went super slow, only upping every 6 hours. To 20, he did ok. This morning I called, he'd gotten up to 25, and was still ok! I couldn't believe it, we were going to be able to go home! His heartrate is still higher than normal, and the teeth grinding is severe, so he's still uncomfortable, but he's getting food!
His eyes are a bit more perky.

His calcium has been super low, so has his potassium, so his gut is still being weird. He has DiGeorge anomolies, and one of those is hypocalciumia, so he has chronically low calcium. He gets 600 mgs of calcium a day, and that keeps it on the low end of normal. Right now he is on 1000 mgs a day to keep it there. We'll be checking that frequently, to try and prevent what happened last time he was on huge doses. He'd been in the hospital for almost a month with feeding problems. Once home, his calcium jumped way up, putting us back in for 3 days to flush it out of his system. That was one of my first posts on this blog!

Let me out!

Probably our last wagon ride out in this hospital.

As usual, he came home battered and bruised. 9 days of constant tries for access. They got pretty creative this time. See that bruise on his finger? Yep, they got an IV there.

Both feet were good places this time. His ankle is bruised from a failed attempt, and then they got one almost on the bottom of his other foot!

I'm not sure how long he'll be on this formula, they would like to get him back to normal formula. My biggest concern is going back to feeding in his tummy. With this big aspiration, and knowing his nissen is not working well, I'm not willing to do it. I plan on talking to our GI tomorrow, and seeing what she says. My guess is we'll have to bring it up to a new surgeon in California, since we move in about two weeks.

I think after every hospital stay, my love for this boy gets stronger and stronger. I feel like I'm in the presence of a real life angel. How did I get so lucky?
His little, 25lb, 5 year old body endures so much. How in the world does it keep working? Two weeks after a 24 hour stomach bug, he is finally tolerating very slow feeds into his gut, still not into his tummy.
Rarely does this warrior fuss. I don't think he cried at all in the last 9 days. I can't even count the IV pokes and blood draws, or how his tummy must have been screaming when not tolerating feeds. The only way I know he is hurting is the sound of his grinding teeth.
He is a truly amazing little boy!

*So sorry to those that have emailed or commented offering help. I'm really not ignoring you, I just haven't had a second to respond. Although I do admit I have a hard time letting people help me. I guess I just feel like I'm putting people out.

A princess 2nd birthday

Yesterday our princess turned 2! We took her to the zoo, where she tried to kiss all the animals!





Since we didn't have a big party yet, we just had some family over for cake and presents. She does know what to do with presents, smart girl!




Ohh, I get cake and ice cream?

She wasn't too sure about the candles on the cake. She let her brothers help with that part!

But she definitely didn't need any coaxing in the eating department. We all know she is a pro there. But mommy never lets her eat this kind of stuff by herself.



A far cry from her orphanage birthday last year.

Happy Happy birthday to our Ukrainian princess!!

Jaxson is still in the hospital, and still not tolerating feeds. Last night they started a tiny bit of formula mixed in with his pedialyte. He seemed to tolerate that ok. They upped it a tiny bit this morning, and that 4 cc's made his heartrate jump, wretching, and grinding his teeth down to nothing! So back down we went.
I talked with my ped yesterday about what she was comfortable going home with. She said he cannot come home if he is not on at least half feeds/half pedialyte. He can't go home on zero calories. The other option was to put a line in and send him home with tpn to give his gut a rest. That sounds like the best plan to me, just because the more we force his gut, the more it is going to resist. No doctor likes that idea though, because his access is so limited. They don't want to use up what he has, they'd rather save it for when he really needs a line. The only access he has is a popliteal, or a line behind his knees, and his right femoral, which I am NOT doing at home! Arms and chest and even neck are all gone. Left femoral is gone from heart caths and a cutdown central line. If he is still there Monday, I'm going to insist on the line. Hopefully we have a good attending next week, not one that will argue with me!

Today has been rough, I won't lie. It was our local Buddy walk, and for a 6th year in a row, Jax could not attend. He has yet to go to a Buddy walk. The only year he wasn't in the hospital for a walk was last year, and that was when we were in Ukraine getting Arina. 5 Buddy walks he's been in the hospital, how sad is that? But its Jaxson's life. It will always be Jaxson's life, and sometimes its so scary. To think that a 24 hour stomach bug has caused his gut to completely shut down, just smacks me in the face with a reminder at just how fragile he really is.

Tomorrow is our princess's first birthday with a family. Her first celebrated birthday, and I'm just glad that we didn't plan a huge party because of the move. Jax being in the hospital would have made that impossible to do.
But it did brighten my day to go birthday shopping for her. I forgot how excited I was to buy girl stuff. But I had to go past the barbies and dress-ups for now, and look at age appropriate stuff. There is plenty of time for the other. I can't wait for her to dive into a birthday cake, and try to blow out candles.
I'm also finding it interesting having her birthday on Sept. 11. In a way I feel like that is a day to remember what happened, and in a way its nice to have something good on that day. I know I'll never forget. That whole day is seared into my brain forever, and I can't even imagine what it was like to be in the city that day.
Prayers and parties tomorrow for sure!

Day 5

Good and bad news on the Jaxson front. Respiratory-wise he is doing much better. The IV antibiotics are clearing up his aspiration, and he is back to baseline oxygen. Although still breathing harder and his sats are very sensitive when oxygen falls off or he gets mad! But much better than two days ago when we kept him on the vent all day to give his lungs a rest.



The bad news, feeding is going backwards instead of forewards. Yesterday we had to turn off his continuous formula feeds and restart pedialyte. His belly was up 10 cm, and he was super restless. He just kind of layed there all day, and his color is absolutely horrid!


I called my pediatrician last night, and left her a message to call me today. We could be here for weeks waiting to get him on regular feeds again. I need a plan, I need to know what she is comfortable with handling outside the hospital. I need all this done before the weekend comes.
My realtor called the other day and said the buyers are ready to close whenever we are. I panicked just a wee bit! For the last 5 days I have done nothing in regards to moving. Not a thing. I still don't have a pediatrician there. And when I get there with some names, I still need to interview them to see if they will work for us or not.

AAAhhhhhh.
Ok, I feel better now!

Tired!!

Oh man I am tired. So so tired.

It's a dang good thing this is the only hospitalization, besides an overnighter, since daddy's been in Cali. There's only one of me, and everything to be done. Daddy is not here to go up to the hospital, or be home with the boys. He comes home Friday. Even though I'm super excited that Auntie Boo's hubby got a job in Cali so we can be close, she beat us there. So we don't have her to come sit with Jax when I can't be there.
I had to leave him at 4:30 today, so I could come home and do laundry and dishes, and get some groceries. I took the boys to get a sno cone at the sno shack, since they've been cooped up inside for 3 days. So packing, uh, I guess that will be done the night before we move!

Jax also had a rough day. I got there, and he was on double the oxygen he was on yesterday. The ambubag was out and on his bed, so I asked if something had happened. His RT said that he just desatted pretty low for a bit. She said it was probably a plug. I said he doesn't get plugs, that its his sick lungs trying to work when he's sick. He was wretching and gagging on full J feeds, and his belly was up 5 cm from yesterday. Feeds were turned off, and the doctor called. He just said to hold feeds for 2 hours, and restart and see how he does. He hasn't said much about the oxygen need increase. I called pulmo to have her look at his x ray. She said you can see aspiration, and also pulmonary edema. She thinks that because his cardiovascular system is so weak, that aspirating has really messed it up and he's leaking fluid into his lungs. His heart is also bigger. I told her that he was mottled and sleepy. She thinks his heart may need some help. That would mean going to the PICU for pressors. Going to the PICU wouldn't be such a bad thing. He hasn't been on the floor in over a year, only the PICU, so I forget how hard it is to get doctors to do things. If he was in the PICU and I said he was mottled and yucky, they'd be all over that.
I'm a bit ADD normally. I think that's how I handle so many different things at once. I like to be moving constantly. Lord knows we've had much longer and scarier hospital stays. But I can't believe how depleted I feel tonight. I can't wait to climb in bed and sleep!

Our princess has a birthday on Sunday. We have decided that since everything is utter chaos right now, that we will have a birthday party on her gotcha day, in November.
And because I need some smiles, and I'm so excited I got the princess to sign for the camera, here is a super cute video of her. Its kind of long and shaky, but well worth the watch!!

Hospital update

I hope everyone is well, I haven't had a chance to check on our friends!

Jax finally got up to a room and settled around 10 last night. I called up this morning, to find he had one of my favorite nurses. The trach/vent pod is on my old unit, so I know most nurses well. I took my time getting up there, to get some stuff done. I saw the attending as soon as I got there. I realized he is one that I don't like at all. He is very stubborn and doesn't listen to me at all. We don't work well together because of this. He said he looked better, which is interesting because he didn't see him yesterday! When I was there with him for a minute and really checked him out, I think he looks a bit worse. He's been running fevers today, and he's definitely breathing harder. His oxygen need isn't horribly high right now, but I keep trying to explain to them that he doesn't do the typical respiratory distress signs. He is a super shallow breather because of his severe hypotonia. So he usually doesn't breathe super fast, he just stops!
I called my ped, praying that she was back in cell phone range. Luckily she was, and she agreed that he probably needed a blood gas checked and another chest x ray. She said the aspiration wouldn't show up until today anyway, so they needed to recheck it. She was going to call up and talk to the attending. He won't be too happy that she meddled, but she knows him best, and she's who I want taking charge!!
So we'll see what happens, to be continued........

Hmm, were to begin!
Last night I put Jax to bed. Everything was normal. He had some serious gagging and wretching. He wretched up more stomach acid. Once he calmed down and went to sleep, I noticed that his sats were only 92 on his typical 2 liters with the vent. I immediatly thought that he aspirated! He dropped into the 80s and I turned his oxygen up to 3 liters. He began wretching again. I took his vent off to suction, and his sats plummeted to the 50's. I popped his vent on, but his sats didnt come up. I cranked his O's up all the way to 10 liters, and very slowly, he came up. But he was gray and unresponsive. He was twitching and it looked like seizures. I called 911!
When they got there, I had his oxygen down to 6 liters, but he was still unresponsive. The paramedics didnt seemed concerned at all. Normally we love this fire department, and none of the men last night looked familiar. But they were really clueless. Im not sure if they are just used to trauma's, but they thought all this stuff was his normal. I finally told them just to leave, after they stood around, not knowing what this and that was!
I got him down to 4 liters and he calmed down and went to sleep. I decided to wait and see what the morning brought.
This morning he acted ok, but his oxygen need and heart rate were high. I knew a chest x ray and electrolytes were needed. I took him to an instacare because everything is closed and my ped is out of cell phone range at the moment. Of course the instacare said no way, he is far to complicated! And sent us to our local hospital that is a satelite to the childrens hospital. His chest x ray looks "wet", not necesarily pneumonia. What?? His white count is high. Not dangerously high, but higher than he's had in two years. His glucose was also 47. They started an IV, and talked to the childrens hospital, which wanted him ambulanced up ASAP. So off we were again to the childrens hospital.
That is were I now sit, waiting to be admitted. Im not sure yet about the chest x ray and why its so patchy when he's actually dehydrated. I guess we'll see!

Published with Blogger-droid v1.7.4

Hanging in!

Jax is hanging in there. We are just trying to avoid the hospital like the plague! I'm just so thankful for the GJ tube, because if it wasn't for that we'd already be admitted. I can't let a thing in his belly, because his nissen isn't doing its job at all!
Sleep baby, sleep!

Crap!!

A nasty stomach bug has made its way through our part of town. It was in my parents house, my sister and nieces who are there got it, even a cousin got it! Its a nasty one. Arina just pooped like nobody's business. Poor Mondo was vomiting, and had severe stomach pains. I've never seen my teenager cry like that, and I hated feeling so helpless when he was telling me to make it stop! I just had a horrible stomach ache. I'm glad it was no more than that, because being the only parent home, I can't be sick!
This morning has been utter chaos! I ran to the store first thing in the morning because I didn't get there last night and we had no milk or juice. I get home, suctioning Jax, and he gags and throws up stomach acid. I wondered if he was catching the bug, or just gagged because I suctioned him. So I debated on whether or not to feed him. I gave it a go, and ten minutes after I started his feed, it came right back up!
Crap, he's got the stomach bug! It really, really bugs me that his nissen isn't holding anything down, although its supposed to be intact. The first gag, everything is coming up. He's going to aspirate, if he hasn't already this morning. Luckily he has a GJ tube, so I ran back to the store, and got some pedialyte. His g tube is draining into a diaper, and I'm feeding him continuous pedialyte into his j tube. He's been asleep since then, I'm just hoping when he wakes up he doesn't keep gagging up stomach acid. That is so dangerous for him.
Then I had to run my sister and mom to the airport, while talking on the phone with the doctor to get zofran ordered. My sister has been here for 5 weeks, so its really hard letting her and my nieces go!
Prayers for the day are no aspirating, and no dehydration!

Working hard at her new skill

Little miss will be 2 in just a couple weeks. She's working so hard on her new skill to have it mastered by her birthday!