1/24-28/11

Things just keep going great.

Omi is no longer on any medications except a multivitamin and an iron supplement. A pretty far distance from where he's been. It used to be a laundry list of meds. It's pretty exciting that the list is now down to nothing.

He's on a lower flow nasal cannula, and doesn't really appear to rely on it too heavily. So, the amount of oxygen he's needing keeps going down.

His incisions from his hernia surgery are healing nicely, and he is starting to look normal "down there".

He has been bottle feeding the last couple of days, which is his final hurtle. He does really well with it so far.

He had a follow up eye exam two days ago, and they said he looks great. They said they don't need to see him again for three weeks, ...... and they booked his next appointment as an outpatient.

We'll be bringing him home pretty soon.

Now we have to hurry up and do everything we were supposed to be doing around the house the past couple months in a couple of weeks. Yikes.

I'm going home when?!?!?!?

1/23/11

Omi is back at St. Luke's with all his girlfriends now.

Couldn't be happier. More in a bit.

1/21-22/11

Omi is still recovering from surgery and doing well.

He had his breathing tube pulled last night and is back on nasal cannula. He is also back up to normal feedings. All good news.

Even better is the fact that he will be returning to St. Luke's either tomorrow or first thing Monday. We couldn't be happier about that. His Doctors, Respiratory Therapists, Nurses and Nurse Practitioners from St. Luke's have all been in constant contact asking about him the whole time. They have even kept his room open and vacant in anticipation of his return.
We can't say enough nice things about what caring and professional people they are.
We can't wait until Omi is back there, and neither can they.

Anyway, Omi is on the mend and getting ready to go back to his second family.

:)

1/20/11

The surgery appears to be a success.

Omi was still a bit out of it when we left tonight, but seems to be doing okay.

He was scheduled for 8:30am this morning, but ended up not going in for his procedure until about 1:30pm. 
He had to go back on the ventilator and will probably be on it for a couple days until he's strong enough for them to take it out. They don't seem to think he will be on for long.

We might have dodged a bullet today, cause they said his hernia was stuck again when they examined him right before surgery. The fear was that his intestine would become stuck, inflamed and blood supply would be cut off. If left untreated, he could have lost part of his intestine and that would have been a pretty big emergency with a big chance for a bad outcome. So, we're pretty happy with the way things turned out today.

Bottom line; he did great and looks somewhat normal "down there" now. Poor kid.

Now we just have to give him a bit of time to heal, kick the vent (again) and hopefully go back to St. Luke's to finish up the rest of his journey.

Thanks to everyone again for all the kind words, prayers, good vibes and support.

 

 

1/18-19/11

Omi is going to have surgery tomorrow.

He's on standby on the schedule. They were booked up, but are squeezing him in. So unless an emergency comes up, he's going in tomorrow morning.

It should be a relatively simple procedure. They do them all the time. After all the other stuff he's been through, this should be no problem for him. 
I'm sure he couldn't disagree with me more.   :)

We hope it's quick and uneventful, and then we can figure out how to get him back to St. Luke's where his nurses and doctors are waiting for him to return.

Cross your fingers one more time for the little guy.

 

1/10-17/11

So um,.....yeah.

Omi was taken from St. Luke's to Children's Mercy Hospital tonight.

Omi has double hernias. 
A quick explanation; His intestines have busted through a lining in his abdomen and go into his scrotum. Fun right? So when he poops, it has to travel through his sack to get done. It can't feel good.
It's repaired by a fairly common surgery. A lot of kids with his condition get them.

It's been on his list of things to do for a while, but the staff wanted to wait until his respiratory rate had improved, cause they have to put down another breathing tube, and they wanted to wait until the were pretty sure he would come off the vent quickly. They even brought in a surgeon to look at him and try to schedule a surgery in a few weeks to just get it over with.

They check his hernias once a shift to make sure that they are able to be pushed back in where they belong. One of them couldn't be pushed back (they call it "reducing" his hernias) So they brought in a Doctor to try it. She also could not get it to reduce. This is now considered a medical emergency cause it could cut off the circulation to his bowel and it could die. Also the bowel could perforate sending toxins into his bloodstream. Nothing to mess with or take lightly.

So the Doc called the surgeon on duty to see what he could do. The surgeon was right in the middle of a surgery and had others booked up, so we had no choice but to send him to Mercy. The Doctor said she needed my permission to send him over. She said "You could let him stay and wait,..... but I wouldn't if I were you." Fair enough, he's going to Mercy.

Most of the staff looks bewildered and sad to see Omi leave and it was just awful. These people know him so well and to think of him not coming back is traumatic to us.
I asked his Doctor; "If I "somehow" manage show up with him back here at some point, you have to take care of him right?" she responded; "Technically,.....yes" 

They bring up this creepy looking thing to transport him.

Heather rode in the ambulance with him, and I followed. We get to Mercy, check in and think "I don't want to learn my way around a new Hospital, and learn a new staff."

This just sucks.


Mercy is a great Hospital, and I don't want to disrespect what they do over there, but we've spent three months over at St. Luke's and want to finish up over there. 
So, long story short, we're already working on getting him back over there after this part is over.


We meet the Doctors and they tell us that they were able to reduce his hernia.
Awesome. Great news.
They tell us that he does need the surgery, and will most likely have it done in the next 24-48 hours. They are going to assess him early in the morning to see how he looks and decide when they are going to do it. 
If they can and will send him back, he could be back by the weekend.
I know I sound like I'm bitching a lot about him being over there, and I am. That's been his (and our) home for the past three months and we have all (Omi included) gotten attached to the staff over there. They know him so well, and we don't want to start over again, especially since he seems to be so close to going home.

Over the last two weeks, he has been making such big improvements. He had low blood sugars, so his feeding were spread out over two hours to compensate. The day before yesterday, they went to an hour and a half. Yesterday, they went to an hour. Today he went to a half an hour, right where he's supposed to be and he tolerated all the changes just fine. That's how long a bottle feeding is supposed to be.
They weren't giving him a bottle until his respiratory rate came down. He's been breathing slower and slower to the point where they were going to give him his first bottle feedings this weekend if he kept it up. He's almost there.
His labs for his liver functions had been great. They were in the last week of his medication, planning on having him off by Friday. 
Everything that has been plaguing him for a while is getting better. We have to get him to learn how to eat, ween his oxygen dependency down a little more, and then it will be time to make plans to go home. These things take time, but he's making great progress, and this setback just sucks for us.
Omi himself probably doesn't really care or realize what's going on, but it's a huge deal to us to send him home from St. Luke's.


But for the meantime, he's going to be at Children's Mercy. He's fine and getting the care he needs.
He got his first trip outside and ride in an ambulance today, so I guess there's that.


Wish him luck and I'll post more when I can and know a bit more.

1/02-09/11

Things continue to go well.

We had a meeting with all the department heads at the Hospital the other day, a kind of "State of the Omi" meeting.

They went over all his current conditions, treatments and medications. We also talked about what the next course of action is, and what he has to accomplish before he can go home.

He is on nasal cannula 24-7 now. That's a good thing. They realized that he's really pissed when he's been on CPAP, and does about the same on that and cannula, so they decided it would be in his best interest to just do the latter.
The rub for his respiratory issues right now, is that he spent so much time on the vent, that he breathes really fast. It's not like he's having trouble breathing, he just does it really fast. Until that comes down, we can't start trying to bottle feed him cause they're afraid that with him breathing that quick, he will literally inhale his food. So, he just has to come down on that rate, which he appears to be doing. It's just like everything else; going to take a little while.

Ok guys, enough CPAP.

Omi also weighs a little over 6lbs now. Can you believe it? A pretty big difference from where he started out. 
He was a double cheeseburger, now he's a whole bag of them.

His ROP (eye surgery) has regressed, meaning that the surgery worked. His blood vessels are no longer obstructed and he seems to be making progress. It's odd, after he recovered, we can tell that he sees more now. You talk or make a sound and he turns and looks at you like you're bothering him. Further proof that he's our kid.
They're still going to check him every week to make sure that it continues without problems.

I can see you now........and I don't like it.

All his lab reports have either been good, or have shown improvement. He's been needing less medication and supplements the last week or two. All good stuff.
He got his first round of immunizations the other night. I guess four of his favorite nurses were almost in tears cause they didn't want to do it, but he just looked at them like he didn't understand what the big deal was. Sounds like that one was harder on them.

We spoke with the nutritionist that we will soon be working closely with. She has a Masters in neonatal nutrition, and the staff just raves about what she's able to do for kids, so we're going to pay a lot of attention to how/what she wants to do.
I swear, I will end up with a degree in chemistry by the time this is all over.
So, she's going to teach us what's best for him given his situation and put him on a plan with a certain type of formula with supplements.
Oh, and he's developing acid reflux. Another result of the vent tube. Know how they treat it? With Zantac and Prilosec OTC. Go figure.

We will also be taking classes in what to expect when we come home dealing with a preemie, baby CPR, how to use an oxygen machine and a heart monitor to name a few. 
So yes, most likely he will be coming home with a few contraptions.

We also spoke about the appointments he will have afterward. He's still going to spend quite a bit of time at the Hospital seeing specialists and Doctors. Yep, lots of follow ups for Omi.

So the other night he had a series of bradycardia's "bradys" that had everyone puzzled. Over an hour he had about twenty of them. A brady is where there is an irregularity in heart rate. So, his heart rate kept dropping and coming back up for no apparent reason. They hooked up a 12-lead/EKG to try and document the event, but never caught one. Too random. He looked like a little bomb hooked up to all of those cords. Lot's of preemies get them, but he really hasn't had but a handful the whole time. Everyone is kind of stumped but the Cardiologist said from what he could see it was nothing to worry about. Hope so. Maybe just one of those odd things that as long as it works itself out,....whatever.

Don't cut the red one!

So, the big question everyone has been asking; when is Omi coming home?

Well, we don't know yet. Things are working in his favor more now than they have since he's been in the Hospital.
His big task is to learn how to eat. He hasn't been able to be bottle-fed at all, so it's going to be a foreign concept to him. We give him a binky, and he tries to push it out of his mouth. He was so used to the tube down his throat that he wants to get rid of everything. 
Not a huge deal, but he is going to have to unlearn everything he's learned until now. The general consensus is that it's going to take a while.
So, if there are some some setbacks with eating (and we expect to encounter a few) it will take a bit longer. Who knows, he could surprise us.
Nobody can say exactly how long it will take, but the Doctors all seem to think he will be there another month, month and a half. 

So there's enough light at the end of the tunnel that we are thinking of installing blinds, but it might take a while longer to get to the end.

Omi does things at his own pace, so that's the way we're playing it. But, we're definitely closer to going home than not.

Eat Omi, eat!    

 

12/30-1/01/11

Happy New Year!

Omi is just about back to normal from his eye surgery. His eyes are still a little puffy and red, but it's not bad. We'll find out next week how well it worked.

Right now he's pretty much on cruise control. He gets a boatload of labs done every Friday, and this week all of them looked great. He's still on CPAP, but gets three hours per shift (shifts are 12 hours) on the nasal cannula, and they are going to extend that to six, then nine, then just have him on that 24/7.
The routine right now is; eat, get bigger.

He got a new crib, so he's no longer in an isolet. You could fit about ten of him in there though.
He got his first real bath in a tub the other night. He seemed to dig it, which is good cause he gets a little funky from time to time.
And, he's on house arrest now. He has a little ankle cuff that will go off when he tries to escape. We caught him sharpening a thermometer the other day, so we have to watch him.

 

Not much else to tell right now. Things are going well.