Arrived…3:15pm…tired…8+ hours on the road each of the past two days…got up at 4:15am this morning…a frickin’ huge stack of mail…a clean house, mmmmmmm…tired…need a shower…and a haircut…follow up on hospital bills tomorrow…tired…
Well we had our follow up visit this morning with the cardiologist at CHOP to check Elliot out after his surgery and give us clearance to head home. She was pleased with how well he’s doing and how good he looks and gave us our walking papers. We skidaddled back to the Ronnie McDonnie and decided to hit the road back to Georgia. Approximately 8.376 hours later we pulled into the Holiday Inn Express in Durham, NC. Google Maps had the drive clocked at 6 hours and 40 minutes. Yeah, that mighta been right, but apparently it’s not smart to drive anywhere on the entire eastern seaboard between the hours of 4pm and 7pm. I updated Google maps with the following info that I thought might be helpful for anyone trying to drive south from Baltimore to Richmond.
EDIT: I realize that I could’ve come up with 100 more entertaining quips than “Stupid Traffic”, but “Stupid Traffic” it was, so “Stupid Traffic” it is.
Sorry for the delay in posting. Again, my attention has been on Elliot’s carepage and my blog has taken the brunt of it. As you know we are in Philadelphia for Elliot’s second heart surgery, which he had on Friday. The surgery went very well and he is recovering nicely. In fact, we are already in the step down unit, two days after surgery. That bodes well for getting home quickly. However, our concerns are with his lungs and how they’re going to respond to the changes. It could take a while to see how they do.
We drove up on Tuesday and Wednesday of last week, 2 days from Georgia. It took us about 18 hours of drive time, having to stop a few times for the T-Monster. There’s nothing like an 18 hour trip with a 4 month old to get you in the traveling spirit.
We are back in the Ronald McDonald House of Philly during our hospital stay. Actually Sunette is staying with Elliot in the room and I go back to the Ronnie late in the evening.
On a side note, I’m starting the boy off right. His dad’s a tech geek, which means I’ll be introducing him to the wonders of modern technology. He seems interested so far. Here you can see he’s paying real close attention to the wonders of the webernets.
Well the time has come again for us to head back up to Philadelphia for Elliot’s second heart surgery. We were originally thinking that it would be in January, but his O2 saturations have remained lower than where the doctors would like so we’ve moved the surgery up a bit. For some history, Elliot was diagnosed with HLHS before birth and had his first heart surgery at 6 days old. It’ll take two more, including the one on Friday, to get his heart to a stable state.
Sunette and I have mixed emotions about this surgery. We’re eager for it to get here, hoping that it will be the answer to Elliot’s nagging issues with his O2 sats and a few other things. Maybe he can finally live like a normal little boy and stay out of the hospital for a while. On the other hand, we’re very nervous about this procedure. Besides the fact that it’s another open heart surgery, on a 4 month old, we’re worried how his lungs are going to react to this one.
See, one of the issues with him all along has been that his lungs have increased pressure in them, which makes it difficult for the blood to flow to his lungs. In turn making it difficult for his body to get the oxygen it needs. Right now, he has a shunt connecting the aorta to the pulmonary arteries, so every time his heart beats to send blood to the body, part of it goes to the lungs. So he actually has his heart pumping blood to the lungs right now. In the surgery on Friday they will remove the shunt and connect the blood flow coming back from his upper body to the pulmonary arteries so that the blood simply drains into the lungs, rather than being pumped there. The problem is, if he has increased pressure in his lungs, the blood may not go there, meaning he won’t get enough oxygen.
So that’s our concern. We won’t know until well after the surgery how he’s going to do. I’m thinking this may be a long recovery. Our anticipation is to be at CHOP for a month or so. We’ll see.
For additional information here are some diagrams that show a HLHS heart prior to surgery and then what happens in the three surgeries. As you can see they liken it to a house so maybe that’ll help you picture what’s going on. Thank you guys for the thoughts and prayers.
Well since I just got my Macbook Pro, I figured I’d try out the new iMovie. I took a few videos and a bunch of pics while we were in Philly that I wanted to combine into a short. FYI, Sunette had a C-section, so although you can see the doctors pull Elliot out, there is no blood or any "educational" aspects in the video.
I know that many have dog-cussed the new iMovie, versus the previous version. I have to say that it was extremely easy to create this video. Maybe I’m just used to the tooth pulling that comes with trying to do the same thing on a PC. Honestly, I finished this up in about 30 minutes.
Elliot was discharged from Egleston Children’s Hospital Thursday evening after a 3 week stay. He had all kinds of little challenges while he was there, from his O2 sats bottoming out to blood in his stool and all the other fun stuff. We’re finally back home, for at least the next four weeks, when he’ll head back up to Children’s Hospital of Philadelphia (CHOP) for the 2nd stage of his HLHS repair. We might be in the hospital come Christmas time, but we’re hoping we can get in and get out.
Unfortunately blog posts have been slow in coming, and probably not very entertaining. The blog was a casualty from all of everything that’s been going on, coupled with very limited access to a computer that can reach the typepad site. I’ve tried from the Blackberry and it’s just no fun.
So…I wish I had more of a purpose behind this post, but it’s another boring, quick update on where we are. At Home, which is good.
The doctor’s started Elliot on a special formula, Alimentum, to see if the issue we were having was related to some protein allergy he developed. After not having food for a full day they tried him on it for a few hours, but he didn’t tolerate it at all. So they stopped his feeds again, and put in a central line to provide nutrients and antibiotics.
At this point the doctors are stumped. They can’t quite figure out what’s going on with Elliot’s stomach and his intestines. They’re not ruling out the whole idea about his intestines not getting enough blood flow, but they’re also thinking it may be C-Diff or the protein allergy. They’re gonna try him for 5 days without food, just the IV fluids, then try him on just a little bit of breast milk.
We’ll see how that goes.
On another topic, the countdown to my Macbook Pro has begun. I’ve been itching for a Mac for a very long time and I’ve been waiting on Leopard. 8 days from now Leopard will be released and hopefully my Mac will be close behind. To say I’m stoked is an understatement.
Sorry for the late, abbreviated post, but Sunette has the computer and I’m at my buddy Eric’s having dinner.
I am truly overwhelmed at the encouragement and wisdom imparted by all the comments on my previous post. I can only say a heartfelt thanks for everyone's thoughts and prayers.
We're trying to work through some news from today. Not to be too graphic, Elliot has had some blood in his stool the past few days and the doctors are concerned/perplexed about what it could be. One thought is that his intestines are not getting the bloodflow they need and may have some areas of decay. Nothing's confirmed at this point.
Another idea is that he may have developed some kind of protein allergy, but they don't seem to feel very strongly about that.
So right now they've stopped his feeds and are jus giving him IV fluids. They may have to put in a central line to provide nourishment and antibiotics until they figure it out. The kid remains a mystery, but he's a cute mystery.
Lastly, I'm posting this from my Blackberry 8830, no my job as a commercial lender doesn't warrant an IPhone so I don't get one. I'm not complaining…yet. Anyway, so I'm blogging from the Blackberry and I'm on Typepad. Problem is, Typepad has a mobile blogging client for every phone, except for the berry, to include the iPhone. Is that absolutely ridiculous to anyone else?
It sure would make my moblogging experience much more enjoyable if I didn't have to drill down through their site using my browser.
Okay "/geek rant".
WARNING: Long post
ahead.
Below is a post I actually wrote a few days ago that never got posted:
carepage as of late. It just came down
to the lack of energy in posting about anything other than what was going on; as
if there really was anything else going on. Beyond that though, it’s been more or less just a statement of
happenings, rather than an introspective look at me and my thoughts. I’ve been challenged by Los’ continued posts
on being real, being authentic. So here
I go…
This whole situation with Elliot has been a challenge, not
so much physically, and maybe not so much mentally, but more so
spiritually. I kind of touched on it in
this post, but I’m still plagued by confusion and
frustration. I want to lay it out, HIPAA
and personal privacy be damned.
Here’s just a snapshot of history. I am a Christian. I was raised in church, but drifted away in
college and for several years afterward. In 2000 I had a true experience of rededication, one so powerful that I
could not write it off as something self cultivated. For about 4 years I was rocking along,
completely sold out in my walk with Christ. I started really getting into Apologetics, the defense of the gospel and
the Christian faith in a logical & philosophical setting.
During that time I read some of the discourse from atheists
as it relates to their defense of their belief in there not being a God. During that time I read some extremely
logical sounding arguments as to the origin of the Bible and how the Christian
faith could have come about, theoretically speaking. Some of these writings began sounding very
logical to me and it really shook my faith. To the point where I didn’t know if what I believed was a farse or if it
was true, even taking into account my rededication experience and knowing
people who have experienced God’s miraculous intervention.
Slowly, but surely, I regained my faith as I continued to
ponder and work out what salvation meant to me. Unfortunately the byproduct was that it was easy for me to slide back
into the seat of a skeptic. So there’s
my history in a nutshell.
How does that relate to Elliot? Well for nearly 4 years Sunette and I prayed
for a child, a healthy child, every night. We earnestly sought God for Him to bless us with a healthy baby, and we
couldn’t understand why this prayer was not being answered for us. Just before we were planning to take the
final step, going to South Africa to try IVF, we found out we were pregnant;
and not by any medical procedure we had undergone up to that point. We felt that this was truly an answer to
prayer as it came at the 11th hour.
Then we found out about Elliot’s first diagnosis,
Hypoplastic Left Heart Syndrome. To say
we were crushed is an understatement. We
couldn’t understand why we couldn’t just have a healthy baby like we had prayed
for. We then found out about Elliot’s
secondary diagnosis, a highly restrictive atrial septum, which would affect how
his lungs develop during the pregnancy, and would mean that he would probably
have to have immediate surgery. The
doctor who diagnosed the restricted atrial septum did not paint a very bright
picture of Elliot’s chance of survival. So again we struggled with why this had to happen and we wondered if we
were even going to have a baby that survived.
Fast forward to the birth. Elliot was born and the doctors were ready for the immediate surgery
that was probably going to be needed to fix the restricted atrial septum
defect, before he would need his first surgery for the HLHS. Thankfully Elliot showed no symptoms and
didn’t need the immediate surgery, essentially raising the survival rate from
30% to 90%. He made it through his stage
one repair for the HLHS, but his lungs were definitely affected by the restricted
septum so he has needed oxygen for most of the 2 ½ months he’s been alive.
Upon birth he was also diagnosed with Hypospadias, a birth
defect of the urethra and his male parts. He was also diagnosed with a minor skin disorder, which means he has
extremely sensitive skin. Hence the
blood blister on his foot early on and some additional blistering on his
scar.
So here we are today, and the questions still remain. Elliot is doing fairly well, but we have him
on oxygen 24/7 and he still has to go through the remaining surgeries for the
HLHS. I mean, why with all of these
other issues did he have to have more complications that just seemed to be
adding insult to injury, literally. The
more we have prayed, the more it seems that things don’t get any better,
sometimes it seems that the contrary is true.
Here’s my struggle. How do I reconcile the promises that God makes to His children in the
Bible with what we’ve gone through? When
He says to ask and it will be given to you, or the parable of the neighbor who
knocks and knocks, asking for some bread; and his request is answered, even
reluctantly, but answered because he asked so fervently. Haven’t we asked, with full faith in what God
could do, haven’t we knocked and knocked? When can you ask enough to have the answer that you seek? And surely there has to be some earthly
benefit in knowing God and believing in Him. How do I now defend prayer, or even belief when I have nothing to point
towards to show that God truly listens to those that call on His name?
This is my struggle, and I’m no closer to an answer. However, I still find myself believing that
He truly has our best interest at heart, in spite of everything pointing to the
contrary. Through this trial people have
said they’ve been encouraged by our faith. How can that be so? Is it just
that I don’t have the heart to tell them that I can’t even be encouraged by my
faith, to be real? So this is what I’m
doing and here’s where I’ll have to leave it for now.
I can’t defend God based on what we’ve been through…but I
will continue to defend God based on what He said in the Bible and how He’s
manifested Himself in others, of which I’ve been a witness. My only hope is that He will understand my
humanness and why I’m having difficulty holding onto faith in light of the
circumstances. The deal is this, I don’t
know what lies ahead, but He does, and I can only pray that Elliot’s life,
whatever it is, will be a positive impact on those that have a chance to
witness it.
Also, since I wrote this post, we are now back in the hospital. This time we’re at Egleston Children’s Hospital in Atlanta. Elliot was transfered up there on Thursday after a routine visit with his cardiologist. His O2 sats are much lower than they should be right now and they’re not quite sure what the issue is. They initially sent him to observe for a few days, but have since decided to do a heart cath, which is scheduled for tomorrow. Hopefully that will finally let them know that it’s not the heart, but the lungs that are the issue. At that point they can begin treating the lungs to hopefully get them to relax. This is just a lingering effect of the restricted atrial septum that Elliot had prior to birth and his Stage 1 HLHS procedure.
Well Elliot has been home exactly one week and we’ve only called the Dr. In the middle of the night twice. Pretty good I think. One of those times is tonight, or this morning I should say. Elliot’s heart rate was fluctuating wildly and we were having a hard time rousing him. So we took him to the emergency room this morning about 1am.
It’s 5:15 am right now and it sounds like they’re making decisions on whether to transport him to Egleston to get checked out some more. Just when we thought we were home and settling in.
I’m posting this from my new Blackberry 8830 (another post sometime) at the hospital in Columbus, so there’s been no decision made yet.
Poor guy. He just can’t seem to get a break.
Choking on Air