I just noticed I haven't posted since Jax came home! 

Oops!

That's because this naughty boy has kept me on my toes since then!

Jax came home a week ago Sunday. He tolerated his feeds without having to go backwards at all! That is a first for us! 

He did really well the first day or so home. Then Monday night he had an episode where I noticed his color was off, and he was breathing fast. I checked his sats and they were at 86. No sign of illness, nothing! Throughout the night he continued to have a high heartrate and low sats. I was gearing up for an ER visit, and he woke up just fine! Oh this boy!

But the next few days he continued to have lower than normal sats and higher heartrate. He also was still breathing harder than normal. Then I noticed puss at the J tube site. I called surgery, and they said it was fine, probably a reaction to the stitch. The next day I took him to the ER because I feared he was getting septic! The ER also thought the site looked fine, but they were going to keep him because his potassium was really low! I talked them into letting me take him home with extra potassium, coming back to the ER for a repeat potassium! 

The next day his potassium came out almost too high! WTH, the doc and I both agreed that his potassium could not have jumped that high in one day without IV potassium. We are repeating potassium today. His j tube has also continued to get worse. It now leaks bile, and is barely hanging on by one stitch, because the rest of the stitches have eaten away at his skin, and he now has a nasty wound around the entire tube. Whether he's allergic to the stitches or the tube itself, they need to go! The bad part is I think this tube was supposed to stay in for six weeks until the tract healed. We have our surgery appointment today, and I'm a bit worried as to what we are going to have to do with this site, and how much pain it will cause him, because he does not like the dressing changes! It's very sore! Keeping my fingers crossed the surgeon has a brilliant idea on how to fix this problem! 

Wish me luck because we are also going to ask the surgeon about a port today. Every doc I ask shrugs me off. But the surgeon is the one that places them, and my ped agreed to help advocate for one after our ER experience. The IV they got, in his armpit, with ultra sound, lasted a half hour! His potassium was so low and we lost his line before they could get IV potassium in, and they didn't like that at all! Hopefully the surgeon will also understand the need for a port!!

Jax continues to do well. A few minor things of course, that's bound to happen. His IV blew in just a few hours, and it left a nasty abscess on his arm. He had a rash from who knows what, so he got benedryl for that. Probably the biggest thing was they switched his seizure med, because they couldn't get topamax in IV form. They substituted it with phenobarb, which is not remotely related to topamax.  As a result from stopping the topamax so suddenly, he had seizures that we haven't seen in a long time! I was quite worried. Despite the fact that Jax was on pretty hefty doses of phenobarb for 5 years, he's been weaned off it for a year. So these big doses of phenobarb have totally snowed him! He wakes up for a few minutes, and then goes back out. He has basically slept completely through the last two days. Luckily neuro caught the boo boo and ordered the phenobarb stopped immediately! 

Surgery just came by and they want to hold off starting feeds for just a bit longer, so home hasn't been mentioned yet.

Jax is out if surgery and doing well. Even though I told anesthesia, they took him off the vent in post op. his respirations were double what they normally are, so I told them to put him back on. He immediately went back down to baseline.  4 hours later and he is still super groggy. He wakes up long enough to thrash, and make faces, and he goes back out. When he wakes up he retracts a lot and his little nostrils flare, even on the vent, so we'll see how he does when he really wakes up. 

His surgeon is really great, when he came back to post op and saw we put him back on the vent, he told the nurse to make sure she listens to mommy. That I can spot a problem even before they can. Such a refreshing change of attitude from a doctor! 

Just hoping for an uneventful evening and night!

Wow, time flies when your a busy momma! 

I hope everyone had a wonderful Mother's Day! I spent mine at my favorite place with my favorite people! Disneyland with my family! 

I rarely have time to even get on the computer anymore! My online time is usually from my phone, like I am right now! It's only going to get busier with summer, and Jax surgery Thursday. We had our pre-op appointment yesterday. Everything is a go. He is having me consent to a central line, as he's sure he will put one in. He also didn't give me a length of surgery time or recovery time, as that all depends on the little man and how he cooperates! Thursday morning we check in bright and early at 5:30 pacific time. I will update here as much as possible. Most will be on his Facebook page, Facebook.com/jaxsonsfight. 

Never get too comfortable!

I guess Jax felt like we were getting a bit too comfortable, and we had let our guard down. Well now it's back up, and back up big time!
This little baby now sits on the back of Jax crib, instead of in its bag, hanging on his supply shelf.

A couple mornings ago, Jax was still in bed, although awake. I was getting Arina's breakfast, when Jax alarm went off. I didn't rush up there, because when he's awake, he tends to alarm more with his wiggly feet and its always a false reading. But as I walked into his room, I could hear him gasping for breath.
He had a plug in his trach.
Its never happened this fast, ever. In the two minutes it took me to get into his room, his airway was completely closed, and he was blue. I grabbed my spare trach, which is right there next to his bed. But he was already starting to lose consciousness! Thats when I panicked just for a millisecond. I wanted to get his ambu bag, so I could give him rescue breaths, but I also knew the trach had to come out. He has never lost consciousness on me before, NEVER! But the ambu bag was not within my reach, so my shaky hands hurried and got the clean trach out and the obturator in, so I could switch trachs. I was able to do it and get him on his vent before he completely passed out. But it was horrible!

I've seen Jax blue at home before. He can be a naughty, naughty boy! But he rarely gets a plug, in fact, he never had a plug the first two years he had the trach. Only in the last 6 months have I had to do emergency trach changes for a plug.
I feel like I've seen just about everything. Between what Jax has done in the hospital, and when I used to work there, I've pretty much seen it all. I've helped with CPR on kids, I've seen Jax code. I've seen his heart rate drop so low, that I think his heart is just going to stop!
I've always been able to remain calm. I've been told in those situations with Jax that I was amazingly calm.
I wouldn't say I wasn't calm on this morning. I worked quickly to do what needed to be done. But deep down inside my soul I was screaming! I was completely and utterly in a panic!
Some people said, oh I wouldn't have been able to do that. Yes you would, when its your child, you would. This is why there is extensive training in the hospital before you can bring a child with a trach home. Add the ventilator and you add another 3 days of training. Although I already had the training, that didn't mean that I was off the hook. I had to sit through that training just like daddy did. And its for these exact situations that they teach you all you need to know!

I guess that was a wake up call. Its been a while since Jax has done something like that. He just wanted to make sure we were always prepared for what may happen next. And to never forget how fragile life really is