Sunday, May 31, 2009

Weekend

The weather was beautiful this weekend. We had a fun day at the zoo planned with our niece Marley and her mom Angie. Of course the morning started off with drama. Brady decided he wanted to rip Jax's tube right out of his stomach. ICK. This was the first time the entire tube came out completely. So Jason was off to the hospital with Jax. Thankfully they got it back in before his hole closed up. They said he had no more than 5 more minutes before the hole closed up and they would need to surgically place it again. (They place it under x-ray to properly place it into his intestines.) 
So now we know if it ever comes all the way out, we have to push the tube back in a little and tape it until he gets to the hospital. Let's not be doing that....
How do you make a 10 month old understand that it's BAD to pull on the tube? We have to find a way to keep it out of their hands, but it's so hard.

Otherwise the day turned out really nice. We did manual labor Sunday with yard work and flower-planting. The boys enjoyed a weekend of fresh air, that's for sure. Which may have helped Brady since he slept thru the night finally last night. We'll see how he does tonight. His second tooth is showing thru the gum line now, so maybe it's a bit of relief for him too. I'm also giving an extra ounce of formula at bedtime (7oz). Jaxon is pretty much the same. He still heaves/retches or vomits up to a dozen times a day, but still doing pretty decent at night. Angie mentioned that she always reads on this blog about his episodes, but to see it in person was a bit heartbreaking. It can be violent at times. He'll have bad hours, and then sometimes he'll go 2-3 straight hours with nothing. Very random with no rhyme or reason.
Tomorrow Jax has a physical therapy evaluation and his appointment at Pathways (Holistic Medical Facility), so wish us luck!

Lots of pictures!

Trying to get Jax to wear his backpack. Umm...didn't work out so well!
Marley and Uncle Jay with a kitty face!
Marley and Uncle Jay feeding the goats.
Marley and the boys enjoying the zoo.
Mama and Brady.
Daddy and Jax.
(Jax was refusing shoes and hats at this point)
Miss Angie and Brady.
The family.
Boys being silly.
Marley helping to feed Big B.
Brady almost clears daddy's head.
The boys having a blast on the patio while we did yard work.
Doesn't get cuter. (Jax hamming it up)
Brady body-slamming Yanni.
I feel awful posting a picture of Jax crying, but you can see his teeth!

Friday, May 29, 2009

Acupuncture and olive juice

The boys are doing good. Brady is still up all night, and will only sleep with Jason or I in the spare bedroom after a certain amount of crying. We hope this doesn't last too much longer. Otherwise Brady is really on the go with rolling all over the place. Jaxon is still doing pretty good through the night. He also had a good occupational therapy session today.
The only new news is that I flavored his water (for feeding therapy) with olive juice and he's taken it just fine! He clearly will love martinis some day :) So we're on to flavor now. Think we'll try lemon, apple and pickle juice over the next few weeks (must be a sour/bitter flavor). Jax also got 8 acupuncture stickers put on - he's such a trooper!

Jax loving his spoon.
Brady loving to chew on ANYTHING.
Jaxon looking tough with all his press-needles in him!

Tuesday, May 26, 2009

Good bye tanks!

Jaxon's oxygen tanks were hauled away today - good bye forever tanks! His feeding clinic and GI clinic follow-ups went well today. We are to continue with the spoon and water and add sour flavoring to it. Apparently babies respond well to sour flavors. We have little sea bands on Jax which apply acupressure to his wrists in place of his acupuncture needle-stickers in between appointments. They seem to be working well. Jax has slept through the night every night since Friday. We are shocked! Like a sudden light switch suddenly went on. He was up screaming in pain and vomiting multiple times a night and BAM, it just shut off. The GI doc believes it could either be his age with reflux settling down, the antibiotics cleared out a bunch of bacteria causing him relief, the acupuncture OOOOOOR (this is the one I brought up) his disease is calming down. The doctor said he's never seen a child "grow out" of this disease, but believes it is possible since this disease seems to be isolated and most likely from his low blood flow and oxygen while in utero. It's "possible" for his nerves to develop and fix themselves, but he said it is unlikely. He still has his normal daily vomiting/heaving/retching, but he seems to have a lot more energy with all this sudden night-time sleep. We pray it continues, and isn't short lived.

We are going to watch his weight-gain over the next month and then decide with the nutritionist if we can take him off the pump for a few hours during the day (which would play into the next step in the feeding clinic process) and increase his pump-rate at night while sleeping. For now we need to keep just a small trickle of food going at all times and give his body a break from the last flair up.
In other news, Brady is having a TOUGH time cutting his teeth. He really seems to be uncomfortable with whining and nothing really making him happy. Hang in there B!


Rachel and B pulling on the pug!
GOOD BYE TANKS!
Brady showing his love for teeth!
Jaxon showing off his acupressure bands! He looks "fast" :)
The kids at the baptism.
The family
Godparents
(minus Uncle Adam)
Mama and baby Jax
Nate and Jax chillin' in their shades.
Mary showing Brady her puppies.

Sunday, May 24, 2009

Baptism

The boys have officially been baptised! (Pictures to follow on next post)
In true fashion of the boys, they tried getting it canceled again. Brady had a temperature of 102 that morning. Our doctor is assuming it's a virus that should be done today or tomorrow, so we're watching him. He seems to be doing just fine other than the fever and some crabbiness. Brady's second tooth just broke through, so we thought originally it was that, but with that high of a temp, we knew something else must be up. So yes, the boys each have their front bottom teeth...too cute! Now I will have to wrestle them down to snap a picture of it!

Both boys are sleeping so well this weekend. JAXON slept through the night Friday and Saturday night. Can you believe it?! I can't! He didn't wake up screaming in pain or puking either night. He slept from 7pm-6am on Friday and 7pm-5:30am with a vomit. We don't know if it's just a few day fluke, or if the antibiotics really helped clean out his system, or if it's the acupuncture. We don't know, but we sure have LOVED it! I mean, don't get me wrong...I woke up constantly wondering why he wasn't up and sat up to listen to him breathe.
As of this morning, all his acupuncture stickers have fallen off. He has an appointment on Thursday to have it done again.

ALSO -  Jax passed his oxygen test!!! Those tanks will be leaving Tuesday afternoon after 10 LONG MONTHS - YAY!! I haven't decided if I will kiss them goodbye or kick them on the way out :)


So, as for the baptism...it went well. The moment we got up in front of the congregation, Jaxon started to heave. I turned around (with my back to the congregation) and let him heave into a towel, which thankfully didn't produce large amounts of fluid or anything. The pastor was sure to explain to everyone that Jax is a patient at Children's Hospital often, and the baptism was actually going to take place there. Everyone seemed to understand. So other than a few loud retches through the service, we made it out without any big crying meltdowns. Not bad for a baby with a fever and a baby who doesn't always feel great! The boys received large blankets from the churches "sew comfy group". Oh my gosh it brought tears to my eyes. The boys received blankets from this group when in the NICU, which is how we found this church.
It was a good day.

Brady exploring Jax's face.
Jax fell asleep jumping in his jumparoo!!
Brady showing how he can clap.
Boys being silly at bedtime.
Only picture I have on my camera from the baptism.
Uncle Clint and Brady after the service.

Wednesday, May 20, 2009

Home

Jaxon is home. He is home without an IV line I should say!
He is at full feed on his J-tube. He definitely still heaves more than we like, but it's either he does that and live a bit more free with his GJ tube and his backpack, or he is carrying that backpack and a line to a medical pole. We don't want to go the IV road unless he starts getting severely sick. The doctor said we may start seeing a trend of what upsets his system enough to end up back in the hospital with extreme vomiting. We looked at his past week, and he had lost 1.4lbs from the day of his motility test to the day he was admitted...only 3 days. I'm sure glad I brought him in. We are awaiting results of the Mitochondrial disease, which take quite awhile. Jax will have a GI follow-up on Tuesday. I'm sure I will have a long list of questions at that point!
As for now, he's finishing up a 10-day supply of antibiotics, continuing his Zofran for nausea, his Prevacid for reflux and of course his acupuncture stickers are in place.
As for now, his intestines are still absorbing his food properly and he's gaining. So we will continue to do our best to make him as comfortable as possible and life everything that it can be for him. We will continue his occupational therapy, chiropractor, feeding clinic, acupuncture and start physical therapy. We are also looking at a holistic medical facility to see what they think. I still have high hopes of getting him to a more comfortable place and maaaaaybe "eat" someday? Although I'm told that would most likely never happen, I will still certainly try.

Thank you for all the love and support you give us. Please continue to keep Jaxon in your prayers.

Tuesday, May 19, 2009

Wait and see

Jaxon is up to full J-tube feeding now. His vomiting has definitely increased, but at the same time I found out that he hadn't received any of his Zofran after 8am today. The nurse said the orders say, "as needed". I told her to not stop his Zofran the day we go full feed in the J-tube! Geeze Louise!
So now we'll have to see how he does the next 24hrs with the J-tube. The doctor told me that if he does well that he'll be coming home earlier. So this means no baptism at the hospital Saturday, and we're not sure we'd be able to pull it together last minute for the church and our house. Oh my gosh...our house. It's so neglected. We didn't get home until after 8pm (Brady was NOT happy about that) and just the thought of having to take the garbage out seemed like such a big task. I wish we lived like the Jetsons and could push an auto-clean button before leaving each morning. So we're not sure what we're going to do about this weekend anymore. We don't want Jax to come home and then have us run around with our heads cut off. That wouldn't be fair to the boys - they deserve some normalcy. It's getting harder every day to entertain those two in a little room and even I'm getting wiped out.
ANYWAY, a genetic specialist came by to meet Jaxon to discuss the Mitochondrial disease he's being tested for. Brady was snoozing in a swing and Jax was playing in the exersaucer. The doc bent down by Jax and he got a huge smile and giggle while Jax jumped around. The doc asked a lot of questions including if the boys were identical (everyone who knows the boys in real life knows how different they look). The doc said that just by his initial meeting of Jaxon, he wouldn't assume Mitochondrial disease. He said he is too social, makes a LOT of eye contact and bounces around like a little boy should. Apparently this disease is genetic so it would most likely affect Brady too (which clearly he has no signs of any health problems) and this disease affects the brain resulting in a baby to not really play rough in an exersaucer like he was and be so social with strangers. I asked when we would get results back from the countless blood and urine draws they've done. He said 3-5 wks, but he would check on a few preliminary ones for me. 
Brady woke up and the doc picked him up and they had a blast together. He put the boys side-by-side and said it was remarkable to see such different babies being identical and said that if they weren't "monoamniotic" he would suggest a DNA test :) Of course the resident came in a few minutes later and said she always does a double take on who the patient is because the boys look so similar...hilarious.
About a half hour later the doctor came back in and said the preliminary tests didn't show any indications of Mitochondrial disease and he gave me the thumbs up. He truly believes that if his motility disease is secondary to something else, it most likely is not Mitochondrial. Thank God, and I hope he's right! I think his motility disease is enough to deal with.
So now we're playing the "wait and see" game. I was reminded to expect hospital stays for Jax when his system gets stressed. I reminded the doctor that this was our 4th stay (not including 11 wks of NICU) so nothing is different.
Thank you for all the well wishes and prayers...please keep the prayers coming.

Great Grandpa and Grandma stopped by to see the boys on Monday.
Auntie Rachel getting a giggle out of Jax.
Jax showing off is large entourage of pumps, bags and tubes.
The boys after their meeting with the Genetic Specialist.
Jason and Brady chillin' on the couch.

Sunday, May 17, 2009

Fingers Crossed

Jaxon is doing well. Today is by far the longest he's gone without vomiting. It's hard to tell what thing or things are doing the trick. He has started to get a very slow drip back into his J-tube (5mls/hr) to find his threshold...please pray that Jax can leave this hospital without ANY intravenous feed. Right now he has four different bags and four different pumps on a medical pole giving him his nutrition. His old GJ-tube backpack doesn't look so bad anymore. I'd give anything to be able to get back to just that. I think I need to send a letter to God.

We are continuing the acupuncture and antibiotic. Jax had physical and occupational therapy today and did very well. Brady surprised us with his first little tooth coming in today. I'm a little shocked since he's been sleeping straight through the night all week. He's been such a good boy overnight for us. I hope I didn't just jinx us!

In other news, we figured we were going to have to cancel the boy's baptism that was scheduled for this weekend. We've decided to keep the date and have it at the hospital. We've been trying to get these kiddos baptised for awhile now, and instead of another cancellation, we've decided to stop waiting for a "better day" and seize this day. I think we could all use a little renewing of spirit.

Here are a few photos from the past weekend:

Jaxon feeling better on Saturday. Let's get rid of some of these tubes...

The boys playing together Saturday.

One of Jaxon's acupuncture stickers. He has one on each wrist, and each thigh.

Jaxon having his hair washed!

Look at that clean hair!

Hey Handsome!!

Shannon giving Jax a smile~

I can't get enough smiley-Jax photos.

Brady is hanging in there with the long hospital days.

Built-in best friends.

A new day

Jaxon is back to his old self and then some. He is smiling, laughing and just all around very happy. We noticed a major improvement yesterday and it's even better today. We've tried three news things on Jax over the past 48 hours, so it could be any single thing or a combination of these things:

1. Antibiotic to clear up an overgrowth of bacteria in the intestines
2. Medical acupuncture (we started this Saturday morning) to end nausea and vomiting
3. TPN (Total Parental Nutrition - Intravenous feed)

We are obviously hoping the antibiotic and acupuncture are the combo that's working. We'll begin very small amounts of formula back into the J-tube this week and work our way up to find his threshold. The goal is to obviously be completely enterally fed (GJ tube) and no TPN. We'll see though.

So here's the GREAT news:
The MRI looks clear and as of 11:30am on Sunday, Jaxon has not thrown up since 8pm on Saturday...yes...you read that correctly. That's over 15 hrs of no vomiting. He has never known such a stretch of normalcy like this. We are besides ourselves with happiness, and his smiles tell us how good he feels.

A GI doctor met with us this morning and said their mission is to get Jax to feed thru his GJ tube and hope it's the antibiotic and acupuncture helping him. So we are pretty happy that the GI team is on the page as us. I asked his opinion (I ask every new GI doc we come in contact with) what his chances are. He said each case is so different so it can be frustrating to know. He said to hope for a healthy life of using the GJ tube (which will be turned into the button very soon) for bolus feeds (so he wouldn't be hooked up all the time). So I have my answer...my hopes have turned to this. All the grim possibilities that he has are so awful to even think. I'm praying like crazy that the TPN isn't the solution, because if it is...he'll have unthinkable possible life threatning issues because of it.

One day at a time is all we can do. Please keep Jax in your prayers and I will keep you all updated daily. I apologize for no pictures since I didn't download any last night while home. I have some ridiculously cute ones coming, I promise.

UPDATE: Jax threw up at 12:30pm and 2:15pm and had a super grumpy episode. We're hoping the vomiting didn't just take a nice long break, or he possibly did have some heaving overnight that was just not caught by the nurse. I consider dry heaving and retching a vomit. Either way, he is better now than he was two days ago, but still having issues. We continue to fight the fight.

Friday, May 15, 2009

Admitted

Jaxon has been admitted back into Childrens Hospital. His health has been pretty bad the past few days. His vomiting was explosive while he started a sudden attack of diarrhea, along with falling asleep often and screaming in pain...docs said he had to come in.

The GI specialist admitted him for at least the next 10 days. His stool sample that I submitted yesterday did come back positive for a certain bacteria they were looking for, so they're giving him meds for that. They said any GI virus will most likely hospitalize him while causing so much vomiting and abnominal pain.

He just got an MRI and a PICC line inserted. They want to try a trial run of being intravenously fed to see if that helps. If it does, then we have a big decision to make if we make it permanent. Although it may relieve his pain, it has high chances of bacterial infections, liver disease and even bigger complications that can be fatal. Our original GI doc told me he's had patients with this disorder contract liver disease and worse. Why isn't there ONE good story out there with a happy outcome? I feel my hopes have shifted overnight. I've been hoping and praying that this baby would never know a life of tubes and be "normal", and now I suddenly feel myself hoping and praying his organs don't fail...

I met with a pain management team to start trying a mix of non-narcotic drugs to try first to ease his awful pain. We will start an antibiotic to see if it helps with any bacteria build up in the intestines. They are also looking into Mitochondrial Disease. Our GI doc is suspecting it may be a possibility. I haven't had a chance to read up on it yet. All I know is that it would've been contracted genetically and it is possible for one twin to get it and not the other. I'm thinking they may suspect the NSO may by secondary as a result of something...so we're searching. We'll see what the MRI shows as well.

I am so uneasy with what is happening. Why is this happening so fast? I don't know if we're making the right decisions, I hate having this power. I just wish I would wake up from this nightmare and have my sweet Jax home and healthy. God... he just DOESN'T deserve this! I will not leave any stone uncovered and will fight for his quality of life...there has got to be something we can do. He has a tube coming out of his stomach, an IV line in his right foot and a PICC line coming out his arm that runs all the way to above his heart.

I'm having such a hard time with this...I just can't believe this is happening.

10 Months Old

The boys turned 10 months old yesterday. It wasn't the most fun day for them. We had to bring Jaxon back to the hospital. He's been so sick since coming home on Tuesday. He has explosive vomiting and now diarrhea. The tube that was replaced on Tuesday was 8cm longer than his original tube, so they changed out his tube to his original length yesterday in hopes that it will give him some relief. I also dropped a sample of his poo off at the lab, although I'm not too sure what they're testing it for. Last night he vomited less, but was up all night long moaning and screeching in pain, and had blood in his vomit this morning. I have a call into GI about this.

Is this just the way it is now? That's all Jason and I think while up and down all night long listening to his inconsolable cries. Thank goodness Brady is learning to sleep through these cries and giving us a break with him at night (thanks Big B).

Let's just look at pictures:

The boys playing together last Sunday morning.
We miss this smile - Jay thinking that Jax needed a "PJ-on-your-head" photo last Saturday.
Here comes trouble! Brady now rolling to his tummy to roll across the room and push buttons!
The boys yesterday. I tried to get a 10-month bday shot, but poor Jax just didn't feel good.
Best shot I could get of him.
He's suddenly been falling asleep while playing now. As cute as it is, it concerns us a bit.