Beyond Frustrating!

I swear, when it rains, it pours for Brax. 😦

We have his first Post-Op follow-up for his hand surgery tomorrow and they will change his bandages for him.  Follow-up again next week to change bandages, and then once more the following week to finally take the bandages off.

Monday, we went to see GI about Brax’s recent increased feeding difficulties and got nothing but bad news it seems.  With all the coughing and vomiting GI is now concerned that Braxton has reflux.  We started Brax on an acid blocker a couple days before surgery last week to see if that would help stop the vomiting and help heal the esophagus which has likely had some erosion from vomiting.  The dr said that sometimes after an illness like Pneumonia, we can develop gastroparesis where the stomach has problems emptying properly due to the illness.  Monday we followed-up on that and not sure if the medicine helped, or decreasing the speed of his feeds had more to do with it.  The doctor decided to go ahead and switch Brax over to Pediasure Peptide which is a formula that digests a little easier so that his stomach empties faster to address the possibility of gastroparesis.  He also decided Brax needs to have a Gastric Emptying Scan which is a study that will basically x-ray Brax’s stomach while he digests his formula over the course of about 2 hours.  This will help to tell us if Brax is definitely having issues digesting food properly. The cure? Surgery. Ugh. The doctor also had us revert back to using the feeding pump for Brax’s G-Tube instead of feeding by mouth.  He wants us to still offer his bottle and food just so he knows he needs to keep doing it and doesn’t develop a complete aversion to eating/drinking by mouth.  He was doing so well before he got sick, now we have all this. It sucks.  I was able to go ahead and the Gastric Emptying Scan scheduled at the end of next week. Our Medical Supply company got us a new shipment of the new formula. And we are continuing the acid blocker and the slower feeds using the feeding pump.

Great! Right? No. Today Brax threw up two of his feeds at daycare.  I was going to try and keep him home while he was recovering from surgery, but those plans fell through and I had to take him to daycare.  Extreme mommy guilt set in. Then, the physical therapist called me to tell me he threw up a majority of his feeding and she was concerned.  Since this has been an issue I decided to let him stay and just slow the feeding pump down even more for the next feed.  Welp, right on schedule 4 hours later daycare was calling that he’d just thrown up the entire feed again. Worst mommy of the year goes to?? This is one of those days I wish I didn’t have to work out of the home. Medicine, new formula, slower feeds and he is STILL throwing up! What gives?!? Left a message for GI Dr, but of course no word just yet.  I’ll be calling all morning until I get a hold of someone.  Now that we are home, Brax has just been somewhat fussy and grumpy. His afternoon feed is finishing up and he fell asleep so we’ll see if he can keep this one down, plus this evening as well.  Also scheduled an appointment with the pediatrician in the morning because his cough is not getting better and I pulled a bunch of green stuff out of his tummy. Sinus Infection maybe? Ohhh I dunno, at this point I’m just overwhelmed and frustrated.

Tuesday, we also saw the ophthalmologist because I’ve noticed Braxton’s eyes crossing intermittently throughout the day and I wasn’t sure if it was anything she needed to look at.  Of course, we get to the office and his eyes don’t cross once! Thankfully, I did happen to have a picture on my phone and she said he was definitely crossing. There are 2 different kinds of crossing. There is one where glasses would be needed to correct it, and another where it just happens occasionally but kids usually grow out of.  To test we have to do a refraction test, so dr gave us some eye drops that we are to use a couple days prior to seeing her and the drops actually bring out the crossing if it’s the one that needs glasses to correct.  Lovely, my child may have glasses annnnddd hearing aids =/ I’ll love him no matter what and he’ll always be the cutest kid I know 😉 But, people suck and are just not raised right anymore and just stare at him, but that’s another post entirely…we’ll go back in a few weeks once his hand situation is taken care of to see what’s going on with his eyes.

I think that’s everything. Confused? So are we. =/

Leave a comment

Filed under Family, Kids and Family, Life, Special Needs Child

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s