Thursday, April 30, 2009

A rough night

First of all, look what this little stinker did to his cannula. This is a first for us, but when your pulling on it all day this is bound to happen.Yesterday was kind of rough for my munchkin. He coughed his head off all day long. And his bowel problem is getting worse. He's getting distended every day and so I'm having to give a suppository every day instead of every 3 to 4 days. I called his GI doc yesterday and she's booked until August so I'm supposed to call today between 9 and 10 because she talks to patients then and she may be able to tell us what to do over the phone. If not, she should be able to squeeze us in somewhere.
And then, he was laying on my bed, and when I went in to change his diaper, his face was more swollen than normal. His eyes were super puffy. I took a pic so I could show my doc but you don't get the full effect from a picture. But you can definitly see his puffy eyes.



He also sounded horrible, he sounded wheezy, I guess he's trying to be like his asthma brothers and daddy. So when he was asleep I decided to try albuterol with him. I took the boys mask off and used the hose and just propped it on his pillow, then I didn't have to stand there and hold it. It didn't seem to do much good though. It didn't bring his sats up at all either. In the middle of the night I had to turn him up to 1 1/2 liters.


Needless to say it was a long night. His oxygen is back down this morning but he's still higher than usual. I feel like I'm being pulled in a million directions with him right now. We are talking to GI, hemo, neuro, and cardiology about problems we are having right now. His neurologist even said that he doesn't think he can do anything else about his seizures, that he's tried everything. I don't think so, and why would I want to go see such a pesimistic doctor? It doesn't sound like he cares to much. But my pediatrician wants to get the EEG first and then decide what do to.
Sigh, its always something, isn't it?

16 comments:

ch said...

Oh, bless your heart!

LC ALWAYS filled up with fluid when she was constipated because she was straining to pass a BM and her heart had more to do than it could keep up with.

I don't know much about Jaxson's meds. Is he on a diuretic? Could you get into your pediatrician for a spot check? I know you can monitor him with your pulse-ox at home, but if it's anything like mine I always like the doctor's instruments better.

It sounds like he's working TOO hard and it's not fair that his system has to run a marathon until a doctor's schedule clears up!

Poor sweet boy...how lucky he is to have a mom so on top of his every symptom and subtle change...hang in there!

Junior said...

Oh Jaxson I sure hope you feel better soon big guy.
Big hugs and prayers

Mama Mason-Mann said...

We're thinking of you Lacey. Hang in there Jaxson!

Michelle said...

You both just hang in there!! And yes, you need a doctor that truly cares for him, that's why we switched to barnette...much better. Hope you get some sleep...I know all to well what those sleepless nights do to ya! Let me know if you need anything. What makes his face swell if you don't mind me asking? Someone asked me the other day if her face was swollen????
and...Medicaid wont pay for anything out of Utah, so since we are crossing state lines, we have to pay 'out of pocket'. We got in touch with a place that isn't too bad O2 for $75 for the week then a bit extra for some tanks to take to the parks and such...not too bad.

Alyson said...

Awwwww little Jaxson!!! I hope you feel better super soon!!

How funny to break his cannula like that!! He's so silly!

You are doing such an awesome job........Moms of sick little ones never get enough credit,.....

I spend ALL DAY LONG trying to get Avery to eat so they won't have to tube feed him again.....I know if they do that, it will end up putting him farther behind eating wise and make him a lazy eater again.......I can't imagine have to do all that you are doing and yet still have time to mae blankets to give to sick little ones....You're quite the amazing mommy!!

xoxoxoxo

<3

Alyson

Anonymous said...

Lacey,

I hope he gets to feeling better soon. Not much I can add that you don't already know. :) Could this be allergies? Just thinking with the puffy eyes. Christopher has had a bad case for the first time this year. Totally get the "bulldog" reference. Going old school, baby vics rub has really been helping Chirstopher, although I use it sparingly. Wished we lived closer. We could tag team with ur kiddos and maybe manage to get a few hours of sleep between us! Hugs to all.

Steph and Christopher
www.carepages.com OurLittleMan

Stephanie said...

Wow, I can't believe he attitude that some of Jax doctors have?! We are so lucky that V's team has always been great. They always have the attitude that "we'll keep trying till we find something that works". It's so crazy, how could anyone give up on a child?!? Just stop trying.. That's not an option and Jax is so lucky that YOU know that!
I don't know if it will help any but when V get's like that I mix albuterol with atrovent in the nebulizer, it works better when their lungs are junky and wet. I know that you've always been a little leary about using suppositories so much, have you tried adding anything to his feeds like fiber or even a little corn syrup? V's issues were occasional but that helps him. If that doesn't work alone maybe adding one of those to loosen things up will help the suppository work better???
And SOMEONE needs to fix that SVC problem.. that poor baby needs some relief. Why won't his doctor fix it?

The VW's said...

Poor Jax and poor Momma! I hope that you were able to talk with your GI doctor today! That must be so frustruating! I'm sure that Jaxson is on dieuretics.....maybe he just needs some extra doses right now with being sick? Gavin needed an extra dose or two each day when he was hospitalized last month. Any new news about his SVC?

You definitely have your hands full right now! I pray that you and Jax get some relief real soon! Hang in there and keep banging on those doctor's doors and insisting that they help him! This makes me so mad!

I love your idea about Make a Wish! Maybe we should both sign up and tell them that Jax and Gavin want to meet and we can go on vacation somewhere together? I would love to meet you and all of your family!

Thinking of you and praying for you and Jaxson! Hugs!

Emily said...

Oh sweet boy... bless his heart.... and mom's too! Justin broke his cannula once too. I don't blame them. I sure hope you can find comfort in the right doctor. We have done some switching ourselves. Let me know if I can ever help in any way! (((hugs)))

Mommy to those Special Ks said...

Poor Jax :(. I hope he feels better soon... for both your sakes!!! Hang in there, we are lifting you both in prayer!

My name is Sarah said...

Oh Jaxson...You silly guy. What did you do to your cannula? I agree - take it away. I hate that thing too. I bet your mom had another one hiding in the closet. My mom does too. They're just no fun are they?

Melissa said...

Oh Lacey...I'm so sorry that Jax is keeping you on your toes so much lately!!
Hopefully these docs will start listening to your concerns & start paying closer attention to this little guy...
Poor Jax & the poopies...that's just horrible! Praying for you to hang in there & all you can do is your best...WHICH YOU HAVE BEEN!
Sending you a great big hug & try not to beat yourself up...you're doing SUCH AN AWESOME JOB!!

The VW's said...

Disney would definitely not be the same after ALL of our boys together there! But, it sure would be fun! A night away sounds like just what I need! Lets do it!

Also, I forgot to comment about the cannula. I can't believe that he broke it! And, the tape stayed on?! Crazy! Strong boy and tough tape!

Get better Jaxson!!!

Heart Mommy said...

Oh Jax Boy,
I am sorry you aren't feeling steller right now... We wish you a speedy recovery with you cough...

The Hortons...one day at a time. said...

Hes getting stronger and doesnt want that thing in his nose! Way to go Jax! haha

We hope you feel better soon!!!!

Loren Stow said...

Oh no - it just sounds so overwhelming! That saying about 'it never rains but pours' is true sometimes!
I hope that you get some answers and also find some doctors who are about getting Jaxson better (not focussing on what can't be done, but what can be done)!
But finding new doctors is easier said than done, I know.
I am thinking and praying for you and Jaxson!