Friday, February 27, 2009

Warrior Mom

Today was so challenging! Well, it started off totally normal and fine. A nurse came to the house to give the boys their RSV and flu shots. After a bit of crying they settled down, I thought the hard part of the day was done. NO WAY.
Jaxon was in the exersaucer and Brady was in the jumperoo. I was sitting in front of them both playing with them. Suddenly I smell Brady and pick on him to Jax, when I suddenly "hear" him poo (like Jax does all night and Jay and I lay in bed and giggle). 
Ewwww, I knew that couldn't be good. I pull Brady out of the jumperoo and lay him on the blanketed changing station I have set up on the couch. To my surprise, Brady had diarrhea go straight thru his diaper, his onsie and his clothes. NEAT. I took a picture so Jason can see how bad it still is. Suddenly Jaxon starts throwing up. I had a moment of panic. I threw a Brady on a blanket on the floor and tended to Jax. When I got back to Brady, his mess had reached every single thing around him. Seriously...this is my life :)
I quickly grabbed Jax, strapped him into a bouncy seat upstairs in the bathroom, and ran back down to retrieve Brady in all his poopy glory. I scooped up the entire blanket and brought it all upstairs. Brady went into the tub, while Jax looked on with giggles.
By the time I got Brady cleaned and dressed, changed Jaxon's pukey clothes, threw poopy items in the wash, and some in the trash and got both babies back downstairs, I was honestly sweating. When I sat down, I thought, "did that really just happen?" It should be illegal for twins to have explosive diarrhea and puke at the same time when there's only one parent!
Makes for a good laugh at the end of the day, right?

So calm and quiet while playing
(Notice the blood under Brady's eye? 
They both cat scratched each other's face in a matter of seconds!)


Yanni is starting to acknowledge the babies a little! Brady thought it was fun.

Jax snoozing with his stuffed animal in the swing.
Playing together so nicely
Uh Oh! Jax took Brady's pacifier! (This is when the blood bath began!)
Jax in a trans with toys.
Before the poo got EVERYWHERE.
Ha ha! Enjoy!


Wednesday, February 25, 2009

Still going

Jaxon had his occupational therapy session today and did pretty good. He actually rolled while on the boppy this morning. Granted he was on an inclined boppy, but at least its a start! Brady and I started up our sickness a bit yesterday, so it's still lingering around for the two of us, and Jaxon for sure.
Jax actually started heaving and vomiting again very often. I'm pretty sure the Zofran was doing the trick and helping in. I left a message for the GI clinic to call me back to discuss it, but after 4 outfit changes this morning, we had enough. I started him back on the Zofran and sure enough, the vomiting is stopping! I'm waiting for a call back to let them know I started the drug back up, and to see if I can drop the other one instead. I've also coordinated for their RSV and Flu shots to be delivered to the house tomorrow and a nurse to administer on Friday - that was a crazy chase with our change of insurance for the boys, but we got it all figured out. Still waiting for someone to call about Jaxon's overnight pulse-ox study.

Here are a few pictures from the past few days:

Brady and Daddy

Jaxon just hanging out.
Brady wiggled off the boppy and playing on the floor.
Playing together.
Giggling at who knows what!
My guys.
Jax talking away!
The result of Jaxon's first ROLL.
They are posing for Baby GQ




Tuesday, February 24, 2009

GI Follow up

Jax had his GI follow up today with Dr. Li at Children's Hospital. He said Jax looked the best he's ever seen him (apparently I'm "pale" tho...). Jaxon's heaving has decreased to a more comfortable level. He has them about a handful of times in a 24 hr period. We've decided to drop the drug Zofran to see how he does. We had to administer that every 6 hrs, so the midnight dose wasn't fun to set our alarm for, so hopefully he does well without this. We also had his electrolytes checked especially now that he's had diarrhea for 4 straight days, but also because we substitute a little Pedialyte in his formula for his lost stomach secretions (that we vent into a bag). The next appointment is March 17, and we'll discuss putting food back into the g-port of the tube to see if his stomach can handle it...that's the road back to oral feeds. But we'll see how he is to determine when to start this process.

I contacted the Pulmonary department at Children's Hospital as well. Jax seems to like his arms out of the swaddle suddenly, and that doesn't work well with his oxygen cannula on. We leave his bottom half swaddled so he can't get to his GJ-tube. We put socks on his hands, but that doesn't make him very happy at all, so that was a bust. Surprisingly he left his oxygen on all night last night, but I was a wreck thinking about it all night. I feel like it's a strangulation threat if he pulls it down, or it could poke his eye out if he pulls it up, or it could just sit there and blow O2 in his eyes. 

Pulmonary put in the order to have his overnight pulse-ox study done. So I'm waiting to hear from them to schedule a night. I think we'd get the results and orders within a week of that being done. I know we have to keep the oxygen equipment until spring in case he would get any respiratory infection, but we'd love to have one less tube to deal with! We'll see how he does, but the thought of that step "forward" would be really nice.

Everyone here is on the mend from our "house of sickness". Brady still has lingering diarrhea, and some eating discomfort AND lets not forget the not wanting to sleep past 3am. Jaxon still has pretty bad diarrhea (also a fun treat at night). Jay and I are just tired since we don't really get to have recovery sleep from being ill. All in all, we'll get there!

Sweet little Sydney

My heart hurts to even post this today. I received this message...in the words of Brook:
"Sydney joined her sister at 6:45 this evening. When Carynne passed
yesterday, her heart just gave up and we tried to recucitate her. We
called the ambulance and she was taken to the hospital. I rode in the
police car while Jake stayed with Sydney. When I walked into the ER
the doctors were waiting to tell me that she had passed.

Today, Sydney was struggling the entire day and we could only turn her
oxygen up to a certain level without blowing up her lungs. When we
got to that point, I just held her in my arms and Jake held her hands.
We had two nurses here with us and they watched the monitors as she
slowly decreased. We just held her and let her take her last breaths
in our arms. She stayed with us for about an hour before they came to
pick her up.

Funeral arrangements are pending at Oaklawn Memorial Gardens, a
division of Flanner and Buchanan. This might sound bad, but I am
thankful that they went so close together so they didn't miss each
other too much. We are going have both services at the same time
sometime later this week.
"
There are just no words...

Monday, February 23, 2009

Sweet little Carynne

I just wanted to ask for a prayer from you all for Brook, the mother of the twins with Werdnig-Hoffman Disease that we are fund raising for. She lost her sweet Carynne yesterday. I was told that she went peacefully. We are all stunned at how quickly this happened, and hope their family can find some sort of peace from this tragedy that seems so senseless. My heart, as I'm sure many of yours, breaks for them today.

Sunday, February 22, 2009

Challenging

This is the word I would use to describe our household right now. So I caught Brady's bug on Friday night and was the sickest that I can remember in years. I was on the bathroom floor for hours, when Jay got the help of Rachel to come over with supplies. They were able to get me into bed without an ER visit thank goodness!
So Rachel was taking care of Brady that night, and Jay taking care of Jaxon, while I was trying to rest in the guest room. Poor Jax came down with the bug by Saturday morning. So I was on the phone with the on-call pediatrician and GI docs at Children's Hospital to know what to do since Jax is a special case. Thank goodness this bug didn't come with a fever or cold systems. We've been keeping Jax as comfortable as possible with a Pedialyte mix in his feeding tube.
Well....Jay got sick last night. Of course! So while he was down and out last night, I had to take care of a baby with major diarrhea while hooked up to an oxygen tank and his feeding tubes, while I myself was still pretty nauseous. Good times in the Lettenberger house!
Thank goodness Rachel is here to help while Jay and I are taking turns at trying to get better. Wow...it's really hard to take care of sick babies with one parent sick, let alone both.
On the bright side, Brady is a lot better today. He's still a bit crabby, but this is telling us it's about a 3-4 day bug. I'm really hoping Rachel doesn't come down with this too. Jaxon's heaving has been pretty good too, but his nights are awful obviously with the diarrhea. He also seems to want his arms out of the swaddle, but it's impossible with the nasal cannula for his oxygen...so I'm a little stummped as how to solve that one. He was up every hour last night....challenging...

Friday, February 20, 2009

When it rains...

it pours, right?

Well we brought Jax home yesterday. The doctor's said it was up to me with how comfortable I felt with Jax at home. He was still heaving or vomiting every couple hours, but honestly, it was time to come home. We have a follow-up on Tuesday at the hospital, so I'll take good notes over the next 5 days and see how he does. They put him on Zofran as well which is supposed to help with the nausea and vomiting. So he's technically on two drugs for the vomiting (and Prevacid for the acid), so I'm going to see if we can get rid of one of those drugs when we see the doctor on Tuesday. I'm always so overwhelmed when we bring Jax home because I have to figure out a whole new schedule for him with new drugs and feeding plans. Figuring out what supplies are needed with the medical company, new O2 tanks and if RSV/flu shots can be given in the home or not. Not to mention learn his new recipe for formula (mixed with Pedialyte or extra calories) and the rate/dose to run his pump at, and now there are all new ports to feed certain things into, and vent other parts...I should really just start my own TV program out of the house...I could be the Martha Stewart of infant reflux and how to organize it all :)

So Jax has actually been doing very well in my opinion since coming home! The only problem is....Brady is sick! He started having diarrhea on Wednesday night, and then yesterday totally blew out his clothes and most everything in Jaxon's hospital room! They had a cleaning crew come in and everything. A little while later he threw up. His pediatrician thinks he has a viral infection. We're feeding him pedialyte and soy formula with hopes it will pass. No fever or anything yet, so we've got our eyes on him big time.

Last night Brady kept us up with his diarrhea, while Jax snoozed like an angel! Jax never heaved or vomited the whole night, even when he woke up fussing here and there. Brady woke him at 5:30am and Jax ended up heaving a little bit then (very typically for Jax to heave when he first wakes up), but he's been doing so well! I wonder if the Zofran is really helping.

We have to keep the boys as separated as possible and clean all the toys and separate those too, because there's SO many hours in the day to do all that! I can't keep up...I've got one puking and the other pooing everywhere...oh the joys of being a mom! PLEASE GOD, don't let Jax get this, he really couldn't handle it.

I swear the boys are just tag-teaming and trading nights to keep us up! 

Wednesday, February 18, 2009

Onto day 14

Jaxon will have his electrolytes checked at his midnight rounds. If they are good, then I'll be bringing him home tomorrow. He didn't do as good today as he did yesterday, but it's still a big improvement from when he was admitted. Honestly....it's time for him to be home. We've tried so many things, and he IS better...just not cured. I'd like to bring him home and see how he does. If he has a handful of episodes in a day/night, it should be livable until he "grows out of it". Apparently the latest drug we've been trying takes up to a week or more to see the full effects, so we'll see how that does. It's making him less sleepy now, and he plays more. The GI fellow who is seeing him this week now offered to try Reglan or Erythromycin again now that his Pylorus was widened. I declined. I think we'll stick to what we're doing now.

Brady is home and it's SO great to see him. He seems bigger even though it was just a few days. He ate his cereal so nice and just loves it now. We'll begin his first vegetable this weekend. I'm assuming when Jax can start tolerating food again (months away yet) it will be solid food over formula...that's my guess!

I can't wait to have both boys under our roof tomorrow night!

Tuesday, February 17, 2009

Onto day 13

Jax didn't come home today, but at least we have a game plan now for his departure. He's doing better than usual, so we're hoping all this venting and the widened Pylorus is really helping. Although with all the drainage we're getting from his tummy we have to do a few things over the next couple days to make sure he's all set. So here's the plan:

Tonight: Test his electrolytes to see where they are after losing his natural stomach secretions for the past 24 hrs through the G-tube into his bag.

Tomorrow: Start replacing his lost fluids with Pedialyte added to his formula.

Thursday: Re-test his electrolytes 24hrs after using the Pedialyte to see if he's all balanced out this way. If all good, we can go home!

If the Pedialyte doesn't replace his fluids well enough for him, then we have take the contents of his g-tube bag and put them back through his J-tube port to be absorbed into his intestines....yucky...yuck! So let's hope the Pedialyte does the trick and we can take this kiddo home for good on Thursday!

I was with Jax for 11 hrs today and he had two heaving episodes (both pretty violent still) and threw-up once the whole time. He threw-up about 40 minutes before I arrived as well, but that's a lot less in a day than he normally does. He had a little different experience during his one vomit that he had while I was there.

The lab tech guy came in to take his blood to check his electrolytes and Jax started screaming and crying horribly when the man walked up to him. Jax was just sitting in his swing and apparently felt very threatened by this totally friendly looking guy. He was not older than 30 and totally clean cut.....not sure what was up with that! I've never seen Jax get upset like that for no reason. The guy picked his finger and Jax didn't seem to notice that, but wouldn't stop screaming and waving his hands around, so of course blood went everywhere and then he puked all over the guy's hand. I asked him if he could leave so I could get things under control and to send the nurse in. The moment he left, Jax calmed down.

Either Jax was tired....or he's getting scared of men in lab coats now. He's usually surrounded by women or Daddy all day, so maybe he's threatened easily now after his last surgery. Not sure. Even the GI doctor since his surgery has been a woman, so there's no way to know.

So up until that last fear-invoked vomit, he only had 2 episodes with me all day long, one being after a bath. He even had PT and OT come to see him and no heaves....he almost did...but he fought it! PT and OT are happy with him. I told them I've been trying to get him on his belly over the boppy and getting his head to go the opposite way that he likes (all recommended by Karen, our regular OT who comes to the house). They agree he has some work to do yet, but seem happy with the current plan we've been on.

Hospital days are so exhausting. I try so hard to keep Jax happy with singing, dancing, reading, playing, that when he takes a nap I have to hope a nurse can come have some adult conversation with me to stay sane and positive. If I just sit there in his room watching him nap I get emotional watching his cute face snooze away with tubes surrounding him. So I'm really hoping the next 24-48 hrs go well, and we can move on and try to find a place of normalcy, or at least something close to it. Don't un-cross those fingers yet!

Monday, February 16, 2009

Onto day 12

Jaxon's surgery went well. He was obviously not the happiest baby in the world for awhile after, but he's coming around. The doctor said the EGD scope showed a very healthy baby inside, but he did find one culprit. Apparently the pyloric sphincter was pretty tight around the J-Tube. This is the ring between the stomach and the intestines. So basically the J-tube filled up this hole almost completely with no way for stomach secretions and the such to go anywhere. This isn't Pyloric Stenosis which is more of a swollen muscle in comparison to this. So the doctor said he widened it (I think with a balloon) and then injected Botox into it to keep it relaxed and open. This should now provide a larger opening around the J-Tube for stomach contents to pass through the sides.

A larger gaged G-Tube was placed (so the healed hole through the skin was dilated, so that's little raw now) so now stomach contents should be able to vent out thru this tube (remember the J goes into the intestines and the g goes into the stomach). So we tested the tube out immediately and just wrapped a diaper around the end of the tube with the G-port open (Pedialite was going into the J-port)...so basically Jax will be fed continuously through the J-port while the G-port is being vented. We had success! We opened the diaper and it was filled with stomach grossness! I was so happy I took a picture!

So we're hoping that since his stomach can naturally get rid of the stomach secretions through a wider Pylorus and a vented G-port, he'll heave and retch less until we can get him to outgrow this! Just think of it as he'll be fed all the time into his intestines, all while his stomach is remaining as empty as possible until the day it's not so sensitive and we can start practicing eating by mouth all over again...I'm hoping spring, but who knows. I'm also hoping Jax can come home tomorrow! Thanks for all the well wishes and prayers, we really appreciate all the support.
*Oh I should say, Jax hasn't started any formula back up until after 8pm this evening, so the real test will be the next 24 hrs!
Update: I also found a clip online last night while researching the use of Botox in the stomach for vomiting issues and found this: http://www.healthcentral.com/acid-reflux/surgery-2197-109.html
This helped me make my decision to go forward the Botox.

After surgery, taking a snooze (with the drugs still hanging in his system I got him to lay his head the opposite way of his torticollis - he took the bait, sneaky mommy!)

Showing his new tube and all that GREAT stomach drainage!
Notice the crazy ports on the end of this thing..seriously, click on the pick to blow it up and check that honker out.
Girlfriends Heidi and Molly.

Sunday, February 15, 2009

Onto day 11

Jaxon is confirmed to have his surgery at 10am tomorrow. He'll get an EGD scope (with biopsies if they see anything), a larger gaged G-tube with a J-tube threaded through, and Botox injected into his Pylorus.

We are going into this with our guns! We are seriously trying everything for this kiddo. I hope and pray something does the trick. Please say some prayers for little Jax tomorrow.

We captured Jax talking away during a clothes-change just after a bad episode...too cute!

Saturday, February 14, 2009

Onto day 10

Happy Valentines Day and 7 month birthday to the boys!

When we got to the hospital this morning, we saw one of the GI docs in the hall. He was feeling very optimistic about Jaxon since there were no reports of vomiting since 5pm the night before. Hmmmm....now I hate to be pessimistic here, but that sounds a little too good to be true.

Well, we walked in the room and I found vomit on the blanket next to him. I walked out and waved the towel around like a mad woman to the nurse while suddenly hearing Jaxon heave. Sure enough, he vomited everywhere. After we cleaned him up, Jason and I gave him another good bath and change of clothes. Then I noticed his swaddle from the night before with vomit on it. Then I realized he had a change of clothes from when I left him, and I found his old ones with vomit on it. Soooo you can pretty much guess the ears I bended about the nurses not reporting his heaves or vomits and obviously not seeing all his vomits. I totally understand that someone can't be sitting in his room at all times, but if they could just feel around him to see if he did vomit, I would appreciate it. Especially since they know that's why he's there. Weekend shift changes are hard, and not totally nurse's faults. We have our regular nurse (Molly) back tomorrow, so we're pretty happy about that. I've already had an extensive talk with the night nurse tonight, and feel confident in her. These nurses work so hard and they really care...it's just so hard to care for someone like Jax who literally just needs someone to be there when he throws up. We can't expect someone to sit there like that unless he was back in the NICU or something.

The dietitian came by to see us this afternoon. She said the GI doc told her that Jax's weight was fluctuating weird and he thought she should order for his feed to be increased. After careful review of his weight, it showed he gained like 8oz one day and lost 6oz the next. This is clearly the result of the scale not being calibrated properly before his weigh-in. She thinks he's gaining over an ounce a day clearly and that was totally scale error. We are leaving his feed the way it is. I made sure to tell her all about the missed vomits and she was going to report it directly to that doctor since she was on her way to talk to him about the weight situation.

Jaxon was pretty cute today. He had a couple bad vomiting episodes, and a few sleepy snoozes, but he sure was active and talkative today! He just had some stuff to say and it melted our hearts! He's always been the quiet one without much babble, but today he decided to just talk it up!

We have reports that Brady is doing great with his cereal eating. Yay! So we're going to be picking up some baby veggie and fruit baby food soon to start introducing those.

Friday, February 13, 2009

Onto day 9

Today I brought Jax his bathtub. I gave him a good wash down in the tub and put some pj's on him to give him a break from the hospital gowns. After the second pj-change, we went back to the gown with some fun little gown-pants that Jay thinks are kung-fu pants!

Jax was extra tired from his new meds. He snoozed on the back of the boppy I brought. I figured he should work on tummy-time as much as possible, but he needs the boppy because of his tube. 

All the specialists agree on our current plan. Watch him on this new med over the weekend and perfom the procedure on Monday. He'll get a larger gaged tube, an EGD scope and some Botox in the belly. His primary GI doctor (Dr. Li) actually said that if the Botox does the trick, then he thinks there's a problem with his Pylorus and something may be able to be fixed with surgery. We've checked for Pyloric Stenosis twice, so that's not the problem, so I'm not too sure what he's talking about with that one.

The docs want to find out if the problem is volume sensitivity or slow emptying or a few other things. Hopefully we get an answer.

Nana and Papa Letts picked up Brady today, so he is gone until Jaxon's surgery is done. We miss him already. We can stay at the hospital past 6pm now, and clean the house before Jax comes home.

Here are a few pictures from today...yes...they're all from today...we had to change Jaxon's clothes multiple times!

The boys are 7 months old tomorrow, so these pics are all we can get.
Loving the Boppy.
First snooze face down.

Second face-plant snooze.
Kung-fu pants :)


Thursday, February 12, 2009

Pictures of last few days


I have no idea what they're looking at here - I'm assuming an angel...

The same things facinate them.



Onto day 8

Jaxon's blood cultures are looking good, and his urine cultures are decent too. They decided to wait on the antibiotics since they had to be done intravenously. Apparently the amount of bacteria and white blood cells present in the quick urine test may be due to a result of contamination. I guess baby labs are done differently than adults with 24-48 hr cultures. So they've decided to watch the cultures over the next day. He showed signs of infection for those two days and is now pretty much back to his self again. I'm done trying to figure that all out!

So after long talks with the GI team, this is our new plan of attack:

Discontinue the Erythromycin (not working good enough since Jax is still vomiting)

Start him on cyproheptadine. Apparently this is a histamine that has been known to help with stomach problems. This seems like the easiest and safest approach we've discussed, so it's worth a try! We will continue this over the weekend until the procedure on Monday.

Monday will be procedure day. Jax will have another EGD scope of his esophagus and stomach, get a new GJ tube and get Botox to relax the Pylorus. The new GJ tube will have a higher gaged G part of the tube, so stomach contents can pass thru easier. This is hard to explain, so bear with me. The G-tube goes into the stomach and the J-tube is threaded thru the G-tube down into the intestines. Food goes into the J-tube and his G-tube is used for his Prevacid (needs to be absorbed that way) and stomach secretions/acid can be vented OUT of this G-tube port. Well since the J part of the tube is INSIDE the G tube, we need to make the gage on the G tube wider so it's easier for the secretions/acid to be vented out...hope that makes sense! With the Botox relaxing the bottom of the stomach, a larger G-tube vent and a drug that may or may not help as well - we're hoping for less heaving/vomiting/retching for this kiddo.

We wanted to wait a few days of this new drug, so if it does work a bit, we know it's from the drug. If we started the new drug today and did the procedure tomorrow, there would be no way to know what was the thing that worked! The doctors said that Jax won't be the last baby they see with this condition, so they too would like to know what works the best.

So Jax will be in the hospital until at least Tuesday after the procedure. I really hope we can take him home that day with some good results. The days at the hospital are long and physically/mentally draining. I try so hard to be "on" the whole time for the babies. Brady is going to be going to Nana and Papa Letts house (2 hours north) for the next few days so we can focus on Jax and his upcoming surgery on Monday. It's not fair to Brady to be spending 10 hrs with me in a hospital room, not to mention all the RSV cases that are on the floor. We've been lacking on tummy time and practicing his cereal eating...it's just not fair to him. 

Jason and I have been packing his things up (oh my gosh babies need so much stuff) and my heart hurts just thinking of him not being home. We've been trying to decide all day if we were going to have Brady go, and when I started feeding him this afternoon, Jax started puking. I had to put Brady down on the bed and he started screaming since he just started eating. Jax was screaming in pain and throwing up in my hand. I had two babies screaming and the nurse came running in...that's when I knew this wasn't fair to Brady anymore. I just can't wait for this to all be a memory.

Wednesday, February 11, 2009

Onto day 7

Jaxon had a temperature of 101.4 degrees at 4am. They gave him Tylenol and it went down to normal. I arrived just after 8:30am and Jax was again for the second day not excited to see me. He was very BLAH and not smiling. I asked them to check his temp again and it was 99.8 degrees.  When the GI doctor came in, I asked about the EGD procedure that Dr.Martinez wanted to perform along with changing out the GJ-tube and the Botox.  This doctor made a face at the Botox and said he didn't feel that Jax quite needed that. I said he'd have to work that out with the other docs and then told him about the early morning temperature and how Jaxon's personality has been off the past 2 mornings. I've also felt that his urine output was low. When the doctor examined Jax he just laid there like a doll with no expression at all. 

The doctor seemed concerned that he had a random spiked temperature and suddenly not his happy self. Apparently the overnight doctor who was on call had no concern....oooookay. So the GI doc listened to me and ordered blood and urine labs and put a hold on any procedures. Well the blood sample was easy, but the catheter collection of urine took 3 different tries throughout the day. Poor baby!!!

It took all...day...long to get any results. At 6:15pm the blood work hadn't come back yet, but the quick test of the urine (apparently there's a long test and they used the short term results) came back with bacteria, blood and white blood cells. So they're starting him on antibiotics just to be safe until the final tests come back. I KNEW something was up! It's not like EITHER of the kids to not smile back at you. He just wasn't "himself" and it bothered me. When dancing and singing the "shake baby" song doesn't work...there's a problem :)

So that stinks. Not only is he not feeling well from the reflux, vomiting and heaving...he most likely has a urinary infection. On a good note, he had a considerable less amount of vomiting and heaving today. Maybe it's from the bag venting his g-tube while being fed thru the J, or the small amount of Erythromycin....who knows!

We'll see how tomorrow goes, and what they all think our next steps should be. It's something new everyday.

Tuesday, February 10, 2009

Onto day 6

So it continues. Today they decided to attach a bag to Jaxon's g-tube port to vent air and stomach contents. It actually acts as a vacuum since he's not passing thru to the intestines, or if he is, his stomach can't handle it. By the time the nurses and the IR team were able to unclog his g-tube (it was clogged from their Prevacid) it was 6pm. So Jax JUST started this bag venting process.  We're also not sure if the Erythromycin is helping since they were pushing so much fluid into his stomach to unclog his tube. We don't know if all his heaves today were due to the fluid in his belly. So we'll see how he does overnight with the bag and the Erythromycin.

While the IR team was in with Jax unclogging his tube, Dr. Martinez came by. This GI surgeon actually placed Jaxon's g-tube 3 months ago and performed the EGD scope. I had a nice discussion with him, and we've decided to replace Jaxon's tube. Apparently g-tubes need to be replaced every 3-4 months. Dr.Martinez wants to take this opportunity of Jaxon in the hospital to just replace the whole thing. Since this procedure involves putting Jax under general anasthesia, he wants to give him another EGD scope to check things out again. Since Jax has been heaving multiple times a day for the past 3 months, it's a good idea to check things out again. He also mentioned injecting Botox to relax the stomach. This would relax the Pylorus so that it remains wide open allowing stomach contents to flow through fast and easy. This really helps treat "Gastroperesis" which is slow stomach emptying.

Dr.Martinez is going to meet with Jaxon's regular GI doctor to review all this. Jax will have this procedure done tomorrow. I'm waiting to hear what time his pre-op begins. Since he will be put under general anesthia, we are guaranteed one more day. Jax will not be happy to have that IV back, but hopefully we'll find the "off button" as the doctor said tonight. I asked the other specialist earlier today how many vomits he's allowed to be considered okay to go home. The doc just kinda looked at me and said it's not normal to throw up. Babies should spit up...not heave and retch and vomit all their stomach secretions. So basically his answer was zero.

Monday, February 9, 2009

Onto day 5

Jaxon's heaving and vomiting has gotten worse. I was there from 8:30am-6pm and he heaved or vomited almost 2x/hour every hour. The GI fellow came to speak with me and then came back 2 hours later with a small GI team. After a long talk with all of them, we decided to use the antibiotic ErythromycinErythromycin appears to improve acid reflux symptoms by mimicking a digestive hormone called motilin, which helps increase the body's rate of gastric emptying. In other words, Erythromycin may help prevent reflux by acting as an agent in the body to help clear food out of the stomach more quickly. Similar to the drug Reglan (which had crazy side effects so we dropped it) but Erythromycin is used for only 2-3 weeks (not effective after that) to kick-start the stomach to work on its own. It's given in TINY doses (nothing compared to what we take it for) and I'm told we'll see pretty quick if its working or not. Jaxon's regular specialist (Dr. B Li) came by as well to see how we were and agreed to try the Erythromycin. Worth a shot right? They all agree (that's FOUR specialists) that he's "anatomically healthy" thru numerous reviews of his upper GI, x-rays, ultrasounds and a scope. Which is great...but I wish at this point they found something wrong that could be fixed...

The doctors agree that we're dealing with a stomach issue here and not an intestinal problem, and this is beyond the "reflux". The nice thing is that Jax isn't throwing up food, rather he's throwing up stomach secretions. The docs said a million things, but the end result of everything is his stomach is sensitive to volume and/or it gets shaky with anything in it. Most stomachs relax when volume enters it.
They're looking into a few things we can try with venting the g-port of his tube into a bag to maybe relieve it that way and give Jax a break from heaving. (sigh...)

I'm not sure what the end result of all this will be, but I can certainly say the doctors are trying! They all conference about little Jax and want to solve this. They have said he has one of the more severe cases that they've seen (of course!) and want to find something, somehow to give him and our family some relief until he grows out of this...yes...they promised me again he will.

I don't know when Jax can come home. They said we'll take it day-by-day. That could mean tomorrow or a week...this retching and heaving is so exhausting to watch, that I can't even begin to imagine what it feels like for my baby.

Sunday, February 8, 2009

Onto day 4

Jaxon did better today. Not great, but better. He took a very nice long 2.5 hr nap today and was generally pretty happy. We gave him a bath and Daddy spiked up his hair for fun. He had about 5 heaves/retches in the almost 9 hrs we were there. Three of which resulted in him actually throwing up his stomach secretions and refluxing out of his nose. I think he needs to actually throw up three or less times in a day to be considered "okay"...I only think this because they always ask me, "does he throw up three or more times in a day?" as if that's the magic number or something. Who knows. We really like the GI fellow who was on staff this weekend. I was a bit concerned they would push Jax out of the hospital as soon as a night nurse reported zero vomits (again...I'm not so sure they actually hear him!). But instead, they are being really cautious about him. Our regular GI specialist will be seeing Jax tomorrow, so we'll see what he thinks of the weekend's activity. We will either go forward with an EGD scope to check things out further again, or they will feel that he's moving in the right direction. We know that the GJ tube won't make the reflux go away, nor his heaves. But we would just like to make Jax a bit more comfortable! We were assured again by the GI fellow today that this "WILL go away".

Jax had his IV capped and turned off this morning, and his food level turned up to the full 26 ml's/hr. He is slowly getting his calories bumped up as well. We'll see how he does overnight tonight. I have a feeling he'll be coming home tomorrow...but then again I thought he'd be home today, so we'll see!

This is what we walked in on early this morning - too cute!
Make yourself at home Brady!
Jax playing with Daddy.
Swaddled for his nice long nap.
Having a little fun. Mommy and Daddy are secretly trying to see if certain activities make his tummy upset.
 (And the answer is no. He had his worst reflux attack while napping on an incline!)
Brady's famous POUT lip!
Jax showing Daddy his new tube and apparently Brady didn't like it!
cry me a river...
My angels...
Oh it could be famous...

Saturday, February 7, 2009

Hospital Update

Jaxon could be the sweetest baby in the world. He was all smiles and giggles and a total flirt all day today....except when he was throwing up and heaving. Yup...he's still doing it. We were pretty excited when the nurse told me on the phone at 6m that he had only had 2-3 episodes since we had left. He had 9 episodes in the 6-7 hrs we were there today. Jason and I don't believe for one minute that Jax only had 2-3 episodes that whole time. The nurses definitely are not always in ear shot of him, and he's throwing up a clear fluid now. We know it's not the nurses fault because Jax is NOT their only patient. They do their best and we know that. We're thinking he's throwing up stomach acid and secretions. We didn't have the greatest experience with the nurse today. She wasn't exactly on top of things. We're not sure if she was just consumed with other patients. We waited for quite awhile to leave until someone could be outside Jaxon's room. The thought of him throwing up alone with no one to help kills us. I'm waiting a few more minutes to call to the new nurse tonight (shift change) to tell her my feelings about someone being with Jax as much as possible.
Jax was supposed to have his feed increased to his goal of 26ml's/hr, but since he had so many heaves this afternoon they stopped increasing at 20ml's to give him a little break and plan to increase again this evening. We'll find out tomorrow if they plan to do another EGD scope to check things out again. Other than the retching/heaving and tubes, Jax seemed to have fun and love the girls.

Saying hello this morning - it was so nice to see him, we missed him!

Brady decided to just get in bed with Jax.


Me with my babies.
Thank God they borrowed us a swing so Brady could nap!
Jax enjoys time when Brady is sleeping!

And we wonder why Brady screams for fun!
Looks like Daddy spiked up Jax's hair!
Big B doesn't miss a camera opportunity!
They brought in Jaxon's favorite jumperoo!
A little piece of home...
Brady decided to be his destructive self!