Jabulani Jonny

Almost Home

Sunette and Elliot made it back to Columbus on Monday afternoon without any problems.  Well, they were on a medical transport so I think they could've handled any problems had there been any.  They've kept him at the Columbus Medical Center since then to make sure all was well.  He's off oxygen right now and there's talk of discharging him tomorrow.  That would be the first time we've had him home since he was born, over two months ago.  We can't wait!  Tell me he's not a cutie!

Coming Home!!

Yesterday it didn't look like Sunette and Elliot would be home for another week.  It's been two weeks since I left them at the Children's Hospital of Philadelphia thinking they would be on a flight the day after I left. 

This morning at 10 I spoke to Sunette and she had just spoken to the cardiologist and would have to call me back.  Before she could, I got a call from the medical transport company.  The conversation went something like this:

Medflight: we're all set to transport Elliot and your wife back to Columbus
Me:  Whaaaaaattt???  Have you spoken with the hospital? 
Medflight:  yes, we've been in contact with your caseworker, the doctors and insurance.  did you not know?
Me:  No one's told me anything.  I'm not even sure my wife knows. 
Medflight:  Yeah, the plane's scheduled to be on the ground in Philly at 11:45am and be back in Columbus around 4:30pm
Me:  TODAY???!!!!
Medflight:  Yep, we're all set.

etc.

So I call Sunette and she was trying to keep it a surprise until she was absolutely sure they were leaving.  We've been down that road before so we didn't want to get our hopes up too much.

Well here I sit at 3:30 and I can hardly wait for them to get here.  In fact, follow along with me now.  They'll be here before we know it!

Home....kinda

I apologize for the delinquency in posts as of late, but I've been a little busy and have focused more on Elliot's carepage.  Again, you can find it by going to www.carepages.com and searching for BabyPayne.

Long story short... since we missed our original medical transport last Monday due to a newly formed blister on Elliot's foot, we were rescheduled for last Wednesday.  After some communications with the medical transport team, Sunette and I felt that it would be best if I rented a car and drove home with our luggage and what not.  As I was getting ready to leave on Tuesday we were still a go for Wednesday morning at 10am.  My plans were to drive all day Tuesday and then meet them at Egleston in Atlanta on Wednesday once they got there. 

Well, during the drive Sunette called and let me know that there were now no beds available at Egleston so they wouldn't be leaving on Wednesday morning, but they were supposed to get some openings so hopefully it would be Thursday.  That was a big let down.  After 12 hours of straight driving I pulled into Atlanta, dropped off the car and hitched a ride with my buddy Eric down to Columbus. 

We found out on Thursday that Egleston wouldn't have a bed available until sometime this week, so the CHOP started looking at other options.  They settled on sending Elliot to the PICU at the Medical Center here in Columbus and the medical transport was set up for this past Saturday.  All seemed to be a go, transport was ready and a bed was available. 

Well, early Saturday morning Elliot spiked a fever and started coughing quite a bit.  They worried that he'd caught some sort of infection so the trip home was canceled.   After some respiratory tests they discovered, just today, that it was the human metapneumo virus...or the common cold.  Unfortunately, the common cold to an HLHS baby is grounds for hospitalization.  So, after all that, they've put Elliot back on a 1/2 liter of oxygen and will keep him until he's stable and no longer needs the oxygen.  That may be a little while.  Hopefully it won't be long, but plans for discharge have been put on hold. 

So I'm in Columbus, trying to get the new house in order and Sunette's in Philly with Elliot.  It certainly doesn't feel like home without the family here.  We're staying in pretty tight contact so if I need to head back to Philly I can do so at a moment's notice.  That's where we are right now.  I'll try to keep everyone posted a little better.  Thx.

Homeward Bound

Well after 8 weeks and some odd days in Philadelphia for Elliot's birth and stage 1 of his HLHS surgery, we are making plans to head home.  It looks like it will be Monday or Tuesday, but everything is in the works.  They will medical transport us to Egleston Children's Hospital in Atlanta, where they will probably keep him for a few hours to overnight to make sure he's stable.  Right now the hold up is that Egleston doesn't have any available beds in their CICU.  Doh.  Everything else is set up and we are ready to go.  So after a long stay in Philly and an up and down hospital stay for Elliot, we're homeward bound.  <cue simon & garfunkel outro>

Biding Time

It's Tuesday the 14th and we've been in Philadelphia for 5 weeks.  We spent 2 weeks at the Ronald McDonald House in Camden, we spent one week in the hospital, and we've spent the last two weeks at the Ronald House of Philly.  When I say spent, I mean that's where we've slept, of course we spend our days at the hospital. 

Elliot's now 3 weeks old and he's doing pretty well after his heart surgery.  They have put him back on a low flow of supplemental oxygen to see if they can get his O2 saturations to normalize.  If they don't then they may have to do a heart cath to make sure the shunt that they put it isn't restricting blood flow to the heart. 

So we're watching and waiting, biding time at the hospital.  Here are some updated pics of the handsome fella.

T-monster

They extubated Elliot yesterday morning (took the breathing tube out).  He's doing very well so far, having a little heart arrhythmia, but nothing concerning right now.  They held off on his feeds for about 12 hours until they were sure that they wouldn't have to re-intubate him.  He was definitely getting ornery from an empty belly.  They started feeding him this morning at 3 am so he's doing better. 

I apologize for the short updates.  My focus has been on the carepage, and I don't want to just duplicate posts.  Although that's about what I'm doing.  I do have some new pictures and what not that I'll post soon.  I left my thumbdrive at the room and I can't operate without it.  Why?  It houses my mobile computer programs and I just don't feel comfortable computing without it.  Haven't heard of such a thing or don't know why you should be wary of public computers?  Check out Lifehacker's posting about how to pimp your thumbdrive.   All I did was install the PortableApps suite and then added a few others for flavor, ie. an image editor, a wave editor and a torrent client.

So if you have a thumb drive and you're on a public computer, check it out.  There's nothing like the feeling of entering the password you use for all of your financial websites onto an unprotected public computer to get you thinking about it.   

Muchas Gracias

I'm running out of ways to say thanks.  This version of thanks goes out to the 12-15 people who are painting my house right now.  People from my church & work are gathering at our new house to paint it before the carpet and hardwood go in, just before the furniture and before we get home sometime near the first of September.  I am overwhelmed by their generosity.  I mean, we don't deserve to have our house painted.  It's something that we can do once we get home and things settle down a bit, but I have to say that we greatly appreciate it.  So...Muchas Gracias to those that are helping.

Regarding Elliot, the doctors plan to extubate him at 4pm so please keep him in your prayers.  He didn't do so well last time so hopefully this one will go a little easier. 

Ventilator out, Ventilator in

Well, Elliot was pretty fussy last night with his vent tube, which was to be expected.  His sedation medication wore off and he didn't like the tube in.  Every time he would get agitated it negatively affected his blood gases and oxidation.  The doctors felt that they should try to extubate (take the tube out) him to see if it would calm him down and his blood gases would stabilize.  So they took him off the ventilator but his blood gases got worse so they made the decision to re-sedate and put him back on the ventilator.  It's not uncommon for this to happen.  It usually takes going through the motion a couple times before they actually stay off the ventilator. 

It's a minor step back, but that's okay.  He's stable now and we'll get him back strong again and give it another shot. 

Post Op

Elliot's surgery was yesterday and he did very well.  The surgeon met with us about 1pm to talk about what he found.  His first words were that he was amazed at Elliot's strength and condition before surgery.  When he got into the heart he found that the atrial septum was definitely thickened and closed.  That means that Elliot should have needed surgery immediately after birth to stay alive, but he didn't.  Somehow he was getting enough oxygen and held out 6 days until they did surgery yesterday.  There is no explanation for why he didn't need surgery. 

The surgeon was happy with the condition of Elliot's heart overall, but did have two areas of concern.  One is that Elliot's aorta is much smaller than what he would like to see, about 2mm.  When working with an aorta this small they run a risk of kinking or clotting after the surgery.  Usually it will show itself in the first 48 hours, which are critical.  However, small aortas are the biggest cause of inter-stage (between surgeries) death in HLHS babies.  So we'll monitor him closely and pray that no problems arise.

The second issue is that Elliot's lungs did build up a little bit of muscle which increases the pressure inside the lungs.  That can cause problems with the "passive" system they are creating to get blood flow into the lungs.  However, this should also show itself within the first 48 hours, so we're watching and waiting. 

Below are links to some pictures after his surgery.  They might be a little graphic for young viewers so please screen them before you show your kids, if your kids are following Elliot's surgery.

After surgery

Elliot's Equipment

After Surgery#2  

Postponed

The surgery scheduled for this morning was postponed after they got Elliot prepped and started getting ready to put the IVs in. The reason for the delay is that when he was born he had a blister on his toe that scabbed over on the second day. Dermatology took a look at it, but never swabbed it. So...the surgeon felt that we should hold off until they get a chance to culture it and make sure it's not a viral infection of some sort. Because the surgery is such a stressor to the baby's immune system, they don't want to take any chances with the baby's immune system being already compromised by a viral infection.

I do not have a date on when they will do the surgery. The good news is that it won't make a difference to Elliot's heart if we wait a few more days. I'm guessing that the surgery will be on Tuesday, but I'll confirm when I find out. Prayers are appreciated.