Sunday, September 16, 2012

Back in the big city :/

Well we've had an eventful few days to say the least..

In my last blog, I was excited that our doc discontinued some of Clays meds: diuril, sodium chloride, and potassium chloride. We had to have a BMP drawn this past Wednesday to make sure his electrolyte levels weren't missing the supplements.
Well, Wednesday evening we got the call to come to the ER at UK because his sodium, potassium and chloride levels were really, really low. And they told us to expect to stay a few days while they lined everything out.

So we got to the ER Wednesday evening and was admitted into PICU that night. Thankfully, Clay was pretty much asymptomatic of all of his diagnoses: hyponatremia, hypochloremia, hypokalemia..except for sweating like crazy and being a little more restless. It's a wonder it wasnt much worse, considering how low his electrolyte levels were.

So we spent two nights in PICU while they supplemented him with sodium and potassium and had labs drawn every 6 hours to check the levels in his blood..they didn't want to make the levels rise too fast b/c that could be even more serious.
Can just I say how bad it SUCKS to watch your baby get poked with a needle every 6 hours?! And this wasn't a little poke, it was fishing every time. His little vessels are very hard to find b/c he's so chubby, so almost every time he had to be stuck 2-3 times until they found a good one. It was pitiful!

On Friday, once all the levels were relatively normal, we got the go ahead to be discharged home, giving sodium supplements every 8 hours. And with a follow-up appointment and blood work on Monday.

While we were packing up to head home, I noticed his heart rate being a little higher than usual--up around 170s, where it's usually 150s-160s..but he was cranky and tired, so I thought maybe that was causing it.
No sooner than we got home, he started getting a fever and his heart rate got even higher to 180s. I gave him some Tylenol and it made him feel better.
He slept good overnight but woke up working really hard to breathe, on like 3 liters of oxygen (usually on .5-1 liter), secretions thick, a fever, high heart rate, and a rash on his arms. I gave him more Tylenol and it brought down his fever and heart rate but Eric and I decided to bring him back over to the ER, just to make sure an infection (or worse) wasn't causing all the hoopla.

So we brought him back--and once we got to the ER, the show was on. A rectal temp of 104, heart rate was 205, on 6 liters of was not feeling good. They immediately have a bolus of fluids and Motrin and Tylenol and shot an X-ray too.
Thankfully, within the hour, he was feeling a million times better. And the doctor said X-rays look good--whew.

So we were admitted to PICU again yesterday afternoon, and now, here we set.

They've done all kinds of cultures to check for viruses and infections, and are giving him some antibiotics too, just to be safe. He's felt a lot better since we got here in the PICU. No more fevers or high heart rates.

The plan is to give him another 24 hours of antibiotics then we may go home tomorrow..

Poor baby bug has had a rough week, but once all of this is lined out, he's liable to feel like a brand new man.

Y'all send some prayers and good vibes to Clay-bug.. We wanna go back home to the hills and enjoy some Fall weather!!

Love & peace to you all!

Wednesday, September 5, 2012

Exciting, exciting stuff! :)

I meant to write a blog after our appointments with our pediatric surgeon and cardiologist a couple of weeks ago, but just couldn't find the want-to...but after our appointment with the pulmonologist today, I just have to share what's going on!! EXCITING STUFF!

Our appointments a couple of weeks ago, with Dr. Draus (surgeon) & Dr. Bezold (cardiologist) went well.
We had x-rays done, just make sure everything was still in the (relative) right spot & Draus said things look good. He thought Mr. Clay was looking good and was happy with how he's doing. We've been noticing a little more output from his g-tube lately (which is draining secretions/bile/yucky-looking-brown-stuff out of his stomach)...and Draus didn't seem too concerned with it. He said the fact that the J tube stints open the pylorus muscle in his stomach will cause things to 'back-flow' long as it's not looking white & milky, we shouldn't be too concerned. If it ever starts to look milky, the J tube could have snaked around in his intestines & started feeding his stomach, which would be a problem for Dr. Draus to fix under fluoroscopy...but that's just something for us to keep an eye on. Right now, everything is checking out good, and we don't have another appointment with him for 3 months! At our next appointment with him, I expect that we'll talk a little more about the potential Nissen surgery that's on the radar. The Nissen will hopefully fix the problem with his stomach, so that we can eventually feed his stomach instead of his jejunum & then we can work on him eating by mouth. But that's a ways down the we are just happy that he's growing so well, and we'll try not worry about the rest at the moment.

When we visited Dr. Bezold with cardiology, we had an ECHO done to check on Mr. Clay's heart. Everything looks stable there. They're always trying to get a look at his aortic arch, because it was determined at birth that he had a narrow aortic arch...but because of the placement of his heart & the fact that his trach gets in the way, they have a hard time getting pictures of it. So, Dr. Bezold says they just have to go by how he looks clinically--and clinically, he looks fine. His pulses are good, his hands & feet are warm, sounds okay with a stethoscope... So we'll take it! We won't see him for 3 months either.

..Now for the really exciting news!!

Here lately, Eric & I have been feeling like Clay can tolerate some time off the vent...we say that because the vent tubing will come disconnected from his trach sometimes, or when we're changing his clothes we disconnect it ourselves--and we've both been taking our time connecting it back, just to see how Clay handles it--and most of the time, he doesn't seem to notice it at all.

So today, we had an appointment with Dr. Anstead (pulmonologist), and we told him as much...then Dr. Anstead disconnected Clay from the vent for a couple of minutes to see how he tolerated it, and he was totally fine...maybe tugging a slight bit more, but he was just looking around, not seeming to notice.
Sooooooooo...Dr. Anstead has given us the go-ahead to start doing trach-collar trials!! The trach-collar will provide humidity & oxygen only, no pressures or extra breaths or anything from the vent! Anstead recommended we start off doing two 30 minute trials a day, then he left it up to us to increase the amount of time off as we see fit.  Dr. Anstead said to work our way up until he's off the ventilator during the day, but to leave him on the vent while he's asleep or napping.

OMG!! Yayyyyyyyyyyyyyyyyyy!!!!

So we'll wait until our medical supply company brings out the trach-collar, then we'll start doing some trial-offs. I KNOW that Clay will let us know if he doesn't like it, he always has..haha! But I'm optimistic that he'll do great!

Also, Dr. Anstead discontinued a few medicines--diuril, potassium chloride & sodium chloride. And I am ecstatic about that--I drew up meds tonight in no time! But he ordered some blood work for next week, just to make sure all of his electrolyte levels are good without the potassium & sodium. I'm hoping they are just right!!
And we didn't leave to doctor today without a shot :( Clay got his Flu shot, poor fella. He was none too happy about it.. Now the rest of the family needs to get ours! Any sickness like that is probably the biggest threat to our little guy at this point.

And for other news...

We have an evaluation with the First Steps program tomorrow, so hopefully that will get the ball rolling with Physical Therapy & Occupational Therapy & things like that..I'm excited for the help. Clay's gotten a lot stronger since we've been home. He's almost sitting up on his own, but not without that extra hand there. I'm hoping First Steps will give me some good tips & exercises to do with little bug.

We have also started supplementing breast milk with formula. Despite me wanting to try an alternative to formula, I settled. It's hard to go against what the doctors recommend, especially with a baby like Clay. I don't want to do anything that would hurt him! Even though I don't think a homemade formula would hurt him by any means, I was uneasy about the consistency of a homemade formula. Because he's getting fed into his jejunum, it makes things a little more difficult. The tube that goes into his jejunum is really small, so thick liquids aren't recommended for the J-tube. Whenever the day comes that we can feed Clay through his g-tube, I am very eager to try a blenderized diet, but for now we are using Baby's Only Organic Dairy Formula...and Clay seems to have adjusted alright. It took him a week or two to get used to it, which kind of worried me at first...but after reassurance from our super wonderful nurse Alexis & her talks with the NICU dietician, I felt better about it. It makes sense that his digestive system would be a little 'lazy' after digesting breast milk his entire 10 months.. He doesn't poop nearly as often now & it smells so much worse...but we're adjusting! :)

So yeah, that's where we are now... Hoping for trial-off success & starting to think about 1st birthday parties!!! ;)

 And Halloween! ;)

Exciting, exciting stuff, that I feel so blessed to be excited about.

My sweet little miracle <3

Lots of love & peace to you all!!