Saturday, November 14, 2009

I think I am going to freak out one of these days.

Okay I am going to freak out soon!! Okay really I do not like to focus on the negative too much and like to be more optimistic, but oh my gosh lately life is hitting me with a ton of bricks. We are on a rocky road to say the least. Sorry for the long ramble. I am exhausted and frustrated and have had an hour sleep.

Blyss picked up bad cold sometime early this week. (Probably when the girl in her gym class coughed on her as her mother sat beside her and watched. Ugh that's a whole other story) So we have been trying to keep Blyss our 3 year old away from her favorite brother. She luckily does not have H1N1 or anything like that and seems to be weathering the storm with a little cough and some congestion. Julian and I have been so proud of our efforts tom keep the cold from Wysdom. Then just as Blyss starts to feel better, guess what?

Well Wysdom didn't catch the cold but is struggling with other issues. Yesterday
he was fine in the day. I fed him a bowl of food and he ate really well. Around his 4pm feed he started to spit up and choke a little. This is somewhat his normal as he has reflux. He kept coughing and crying so we stopped the feed and he threw up the rest. Usually we just stop and move onto the next feed. Well this happened for the next 3 feeds. So that means that he did not have any food from 4 pm really on. My husband did the 12am feed and he couldn't keep that down either. I went to bed at 11:30 and to up at 12:00am. I then sat with Wysdom while he screamed his head off for the rest of the night. Every time I moved him or layed him down he cried and went into a fit where he became so upset and full of gas. At 2:00am we started to really panic and called our on call nursing company. We spoke to a nurse and mention our concerns about him not being able to tolerate any food and also when we tried it sounded like he was aspirating which does not really happen for him. She suggested we do no food for the night and that she would show up at 8:00am. She also suggested to use a suppository( well that didn't go well or work) To be honest we don't know what the #### was or is still going on. He is pushing like he is constipated, crying hysterically and throwing up non stop. I stayed up all night with him and then slept for an hour before the nurse came.

When our nurse came his heart rate was up in the 180's and his 02 sats were low. He cried like I have never seen him cry. Last week was nothing to this. He started to get so overworked and couldn't catch his breath. She suggested that we alternate between Tylenol and Advil and that if we could not get any food to stay down to go into the hospital!!!!!!!!!!!! So needless to say that I was crying and freaking out...we just got outta there. Meanwhile Blyss is freaking out to because her brother is screaming. So luckily we got half a feed into him that took about 3 hours to do. He didn't poop, but he has soooo much gas. We have heard that venting the tube will help but it seems to be like a cycle. He cries, we vent, he cries we vent more..... I am so confused as to what it is. While all of this is going on we called to hospitals and talked to both of the on call doctors and they suggested that we continue to do what we are doing.

Then..as we are finishing the feed the feeding tube attachment from the pump pops off on it's own I guess from gas. All the milk pours onto the floor and in the middle of the milk is some foreign object. Not to big,red or brown maybe a sticker maybe a piece of plastic or something. Shortly after this Wysdom stops his cat like clearing of his throat. Julian are not sure if the g tube has broken inside or if he ate something he shouldn't have but we are happy he is calm. Unfortunately all day he has continued to be fussy and require venting and drugs.

So that is where we are at right now. We are runnin his feeds over 2 hours and he is having trouble keepin that down. Please send us good thoughts and pray that we get over this and that my little man can just be himself and not in pain. Any G TUBE Mama's have any tips on venting or why this is occurring? Any Mama's that deal with constipation in their little ones, can you shed some light? Or could this be teething too? Or everything at once. We are so lost right now.... Any help would be great. I am really starting to wonder what the heck is going on lately with our luck??? So right now we are just waiting to see how each feed goes and to see if we need to bring him into the hospital. Ugh!!!!!!!!!!! I so don't want to go back, but I don't know what else to do for him?! Next week is packed with appointments for his eyes, his hearing, his feeding team and his physio and I am just feeling so overwhelmed with him being sick. I just want my happy little man back.

10 comments:

Laurie said...

Oh Sasha! Im so so sorry! I wish that I had some wonderful advice for you...but I'm afraid all I've got to offer is a big ol' ((hug)). : (

Im sure you've tired everything already, but we use Milk of Magnesia for D's constipation...

I'll be thinking of you guys. Hang in there...

ch said...

Do YOU think he's constipated? Would he have constipation issues that caused throwing up BEFORE the Gtube?
Sorry, I can't remember, but I'm also guessing he did NOT have a fundo, since he's throwing up?

I'll let other Gtube moms chime in with their experiences...but i can share that LC had a hernia that wasn't immediately diagnosed as being as serious as it truly was. I think Vinentio had SIGNIFICANT hernia-related complications and Stephanie would be able to share what some of those symptoms, etc. looked like.

I think your instincts are right on. If you'd never seen these behaviors before the tube, then they must be tube related. Without the fundoplication, you shouln't have to depend on venting at all...

Feel free to email me and I can send you my phone #, too, if for nothing else than moral support!

Long comment short, I'd ask for an Xray and honor Wysdom's communication that something is WRONG.

ch said...

Plus also, please forgive my typing errors...VINCENTIO...SHOULDN'T...my brain and fingers are no longer in direct communication with one another.

Carrie said...

You guys have had it so rough! I'm no help with any advice--but I'll keep you guys in my prayers. HUGS!!

Cathy said...

Oh man...thinking of you!!! Hope this all gets better soon.

Ruby's Mom said...

Poor little guy.I'm praying for Wysdom to feel better soon.

Stephanie said...

Hey, I just logged on and saw some of the issues Wysdom is having. Yes, V had a major diaphragmatic hernia that caused his intestines and liver to move up into his chest cavity and collapse his right lung. His major symptoms were vomiting nonstop and acute fussiness but he also had a really hard time breathing. He was requiring a full 2 liters of oxygen to keep his sats up. That is what prompted the CT scan that showed us what was happening.
Courtney is right that if he's not had a fundo, venting can be helpful but he shouldn't be dependent on it. However, if it helps him.. do it!
If his symptoms persist another day I would DEMAND that he get an exam and xray to rule out a surgical complication. Doc's are good, but V is proof that stuff happens even with the best surgeons. Until then alternating the Tylenol and Motrin will hopefully help any pain and if he gets to the point where he won't hold down anything, just try putting the g tube to constant drain. I don't know what type of tube he has in, but attach an extension if it's a button, if it's a long tube, you won't need one. Take the end of the tube and open it up...
I wish I knew what you have available..
We keep a drain handy (mucus trap drain) for these situations. Just attach it to the end of the tube and leave it open to constant drain to decompress his stomach. But even something as simple as a rubber glove can work to collect stomach contents in a pinch. Just secure it to the end of the tube and leave the tube open to drain.
The constant decompression can really help the discomfort of tummy problems.
Him passing something is conscerning though. That would lead me to ask for an xray.
If you need anything just email me at stephsnfrd@gmail.com

Mel said...

Looks like you have some good advice here. I have no experience in this area, but would agree that you need to demand further investigation. Hoping things improve quickly. Sending lots of love your way :)

Baby Gabe said...

Gabe had a fundo, so we vent since he can't burp or throw up. Alot of times he'll get fussy and we actually have to put the farrell bag he drains into on the ground for the feed to back up to relieve some pressure from his belly. He tends to get the most fussy when he's sucking down air from his pacifier. I wonder if Wysdom is constipated and the feed has no where to go. Or, I wonder if maybe the tube placement has moved and it's up against the side of his stomach. A dye study wouldn't be a bad idea. Gabe had to have one when his tube popped out. They just put some contrast thru the tube and followed it on an xray from his stomach into his intestines to make sure nothing is obstructed. Maybe if the continuous feeds aren't going well, you could just do pedialyte for awhile so he doesn't get dehydrated and see if he tolerates that. Good luck. I"m thinking of you.

Michelle said...

so sorry for everything that's been going on! Praying it's all better now!