Byrne Family... of five!: It's Always Better When We're Together!

Not sure Jack Johnson used an exclamation point, but it works for me :)

It's been a crazy, sleepless, busy, steep-learning-curve, kind of week... and it's so much better than any of the 55+ weeks before it! Plus, we have had wonderful help from friends and family. Many hands make our load lighter. Thank you!

Since getting home on Tuesday, I feel like we have been in a whirlwind... and a dream. I thought it would hit us on Wednesday morning that Samuel is actually here with us, but I was wrong. Just about every hour we look at him in amazement, and ask ourselves if this is real. Then I realize I haven't left the house or talked on the phone in four days - it is real! No drives to Charleston and no calls to the hospital... it still feels un-natural not to call in first thing in the morning and last thing at night. I don't have to ask anyone how my boy is doing! I can walk in and see him any time I want to!

Even with our daily visits, we have seen Samuel more in the last four days than in the last month. We are learning so much. I knew he was a sweet boy, but had no clue his sugar content was so high :) ha ha! Not sure if I'm actually funny, or slap happy, but it's funny to me!

The whirlwind has been incredible! Giving meds, responding to ventilator alarms, getting used to the constant hum of the oxygen concentrator, trying to care for all three babies needs for the basic food, love, and sleep... not sure where the days have gone. Night #1 was 30-45 minutes of sleep at a time, nights #2 and #3 we got about two 2-hour snoozes, but by night #4 we were down to almost normal sleep with 1-2 times of getting up for diaper changes, suction, etc.

Have I mentioned that I absolutely love having Samuel home!! While I am typing, he is sleeping in the next room - just awesome.

Next steps - first, make it two weeks without being readmitted to the hospital. Statistically, we should end up back in the ICU within two weeks... actually, the odds were that we would have gone back in the first 48 hours - but we didn't, yea! Samuel still has his PIC line in (kind of like a more permanent IV - that travels a lot further through the body), just in case. There are some down sides to this, but the up side is that if we need it, it's there. If he did have an event, it would be very hard to gain access, which we would need quickly... I figure, if you have it, you won't need it :) Kind of like insurance... or bringing an umbrella to a picnic.

Second, we have at least 8 follow up appointments in the next month or so... everyone from pulmonology, cardiology, neurology, opthalmology, ENT, high risk clinics, to our local pediatrician. Pretty sure I forgot an 'ology, but you get the point :) Some of these appointments are standard follow up, and some are to help us adjust things like meds and vent settings to be sure we are giving Samuel the best care from home. All but our local pediatrician are back in Charleston.

Long term, we will come off of the ventilator and get rid of the g-tube. These could take a while, but you never know ;) In general, I think the average for a kiddo like Samuel is another 1-3 years on the ventilator. I'm not sure there are averages for the g-tube, but if I had to guess I would say another 1-2 years. He has never eaten with his mouth, which is a strange concept for most of us, but this takes a while to learn. Great news for us, Samuel's oral aversion is not as bad as it should be! (Most babies who are intubated as long as he was have very strong oral aversions, partially due to having so many tubes down their throat for so long and also because they never got the chance to learn - when they get food or liquid in their mouths they don't know what to do with it so they choke. ugh) Hopefully our guy will start to enjoy more and more food soon... which means I should actually WAIT to learn to cook, right? I don't think it will do him any good to smell burnt, most likely non-edible, food :) No excuses, I actually have started trying to cook... very slowly, but surely.

Our guy is home! And so happy...

The morning he left, Samuel had a few visitors :) Such a social baby boy!

I'm pretty sure he is going to miss his friends :)

At the hospital, residents do 3-week rotations throughout the entire hospital... so it's rare that you would have a resident more than once. I'm pretty sure we've met almost all of them at this point :) But Samuel has been taken care of by this particular resident THREE times! Great story - he swore he would be the one to discharge Samuel... in January he discharged him, but only from the NICU to the PICU :) This time he got to send him home!

Samuel did a great job on the ride home! I had to sit up front, but could see his sats the entire time, and he was nice and relaxed. Here we are unloading in the driveway - so many happy tears. (We have heard stories of babies making it half way home and having to turn around and head back to the hospital... making it home felt so good!)

So much to do at home!