29 April 2009

April and surgery pictures

So it took longer than I thought (doesn't it always?), but I've got the pictures up from last month. I've got a few captioned and will finish tagging them later this week, but you can browse through at your leisure. There are 100+ pics again, including his surgery, Easter and our meet up in Birmingham with a few other Apert families.

Click here for the pictures

All in all Isaiah is doing pretty well right now. He's still crabby about his casts, but sleeping better and we've been weaning him off the meds spacing things out to once every 6 hrs now. He's already starting to crack his casts at his feet from all his kicking and banging, but I think it'll hold up for the next two weeks (I hope it does at least!)

24 April 2009

Home Again

We're back home and boy does it feel good to be back. Isaiah had the biggest grin on his face once we walked in the front door, it was so funny.

He's been in better spirits today now that we've got the whole medication schedule figured out. He's smiling like crazy now and wielding his appendages like little blue weapons right now. He's throwing haymakers like a Hanson brother and has connected with my face on a few of them. He also nearly smashed the keyboard while I was writing an email earlier and had him on my lap.

I looked at the camera and we've got tons of photos and I just don't have the energy to get them up tonight, but they will be up soon.

22 April 2009

Dallas Day 3 - Going 'home'

Well we're in our home away from home right now, back in the hotel. Dr. Fearon came by this morning around nine and said everything looked good. Isaiah was breathing fine, took the bottle fine, evacuated his fluids fine and to top it all off was fighting to get the IV off his head and the Pulse ox sensor off his ear. His pain level seems pretty well managed and once the iv and O2 sensors were off he was a bit happier. He's just running a bit hot right now, no fever, but just sweating because of the casts and the fact its 91 here today. We're laying low in the hotel today and actually taking off for home tomorrow so we have the weekend back in ATL to recover and get into a groove sort of before I head back to work.

21 April 2009

Dallas Day 2 - 6&6 Success

So surgery went well. Rachel and I spoke with Dr. Fearon briefly after the surgery and got to see some quick pictures of what Isaiah has hidden beneath his casts. We've got 6 fingers and 6 toes right now and it sounded like Dr. F said that it looks good for getting 10&10 with the second stage of surgery in 12 weeks. We got to go back into the recovery room at about 12:15 and despite being a bit crabby Isaiah looks pretty good. His face is a bit swollen so he's sleeping off the pain killers with his eyes slightly open, but he's breathing fine. He's got casts up almost to his shoulders on his arms and almost all the way up to his groin on his legs and big puffy padding around the casts right now so he doesn't whack himself too badly. As Dr Fearon puts it, he kind of looks like those big wheel bikes from the 80's with his big blue arm casts.

I'm sure he'll be crabby when he wakes up more and probably in a good amount of pain too, but we're happy that he's got fingers and toes. I can't tell you how good it feels. I'm crying a little just writing this I'm so happy. It's just an odd feeling because we kind of already miss his little 'paws' since we had gotten so used to the only thing we had for the last 9 months, but its a great feeling to know this is all going to help him immensely. We could tell he was getting frustrated with his hands as they were. We know he'll be frustrated for a while with the casts and all, but it'll be better in the long run.

Thank you everyone for all your thoughts and prayers for the surgery. I wish I could call you all individually, but we will all catch up in due time. We've still got a lot ahead of us. We'll be in the hospital at least another day. We have to stay in Dallas at least 24 hrs after discharge and then we've got that nice 12hr drive back home. He's completely immobile with casts on all extremities for 3 weeks and then we've got to swap out bandages 3x a day until the skin is completely healed over. It'll be tough, but fun to finally see his fingers and toes. Plus we get to go through this all again in 12 weeks. He's a tough little guy, but we know he's got a lot of people rooting for him. Thanks again.

Dallas Day 2 - Surgery

So the appointments yesterday went well. I apparently fell asleep at 8:30 last night, but since we had to get up at 4am again today it was probably for the best so I can have some energy tonight.

Isaiah's in for surgery right now. He got his first bit of 'goofy juice' (Versaid) which loosens him up a bit and helps prevent the separation anxiety. He started singing to Rachel and me in the holding area before surgery. It was so ET like with his little singing voice and glowing red light from the Pulse Ox sensor. He's already got his tubes in his ears and Dr. Peters is sending off the fluid he had in the left ear since birth to the lab to see if it's anything we need to keep an eye on and get some antibiodics for. They've just started the 5-5.5 hr surgery on his finger and toe separations here a little before 8am CST. I'll try to get a post up ASAP as soon as he's out.

20 April 2009

Dallas Day 1

Captain’s Log, Stardate 042009

Okay enough with the Star Trek Next Generation references. I’m a little goofy this morning, probably due to the lack of sleep. I’m writing this post intermittently today in log format but posting it later in the day so sorry if everything is a bit confusing.

4am Wake Up! Time to give Isaiah his last nebulizer treatment before the hospital and wake him up enough to get a little pedialyte into him before the 4:30am cutoff of no food.

6am Bldg D – Medical City, sign in and the start of all the paperwork on the 2nd floor. We head up to the 6th floor for his vitals and more paperwork. (29” / 19lb 2oz and a healthy SPO2 range of 97-100%

7am Down to the 1st floor for his MRI of his head to help Dr. Fearon plan when we’ll need another cranial vault. I wonder what floor we’ll be on next?

8am MRI is done and we go back up to the 6th floor to ‘recover’ a bit. Isaiah’s crabby the whole way up to our temporary room until he gets some pedialyte and Apple juice. We get our vitals checked again and we’re officially discharged. Since we’re on the floor we decide to see another family on the listserv, the Sanborns from Vermont. Their daughter Olivia has Pfeiffers a somewhat similar craniofacial condition. Olivia just had her midface surgery and is in a RED (halo like device). We’ll be doing the same thing in a few years.

We now had a little break and went back to the hotel to get Grandma Hanthorn before we headed back to the hospital at 10am for before pictures, more paperwork, and some preoperation information.

We’re at lunch right now and head back to Medical city at 2:30 to see the ENT and Dr Fearon, and then we’re done for the day!

19 April 2009

Dallas Day 0.5

I can't very well call it Day 1 if we've only just gotten here at 6pm now can I?

Well we made it here in one piece. We had the joy to meet up with three other families with Apert children in Birmingham yesterday. We met at the Petersons house and got to meet Kyle and Christie's son Sidney, Marie brought her son Jack, and Brittany had her 8 week old (i think) son Ian there as well as his nanna Michelle. It was great to meet more families with boys closer to our age and only 2 hrs away from us! We'll have some pictures up when we get back home since I forgot my camera cable at home.

Anyways, we're starting to get the nerves for the surgery. Tomorrow will be a day full of pre op appointments and an MRI. Tuesday is the actual surgery starting at 7am and it should be about a 5-5.5 hr process to do the fingers, toes and put the tubes in his ears.

I'll try to update as much as I can, hopefully daily, but we'll see how things go here.

17 April 2009

Thunderbirds are go!

So we're all clear to go to Dallas, which means we're scrambling to get everything ready to leave tomorrow am, which also means short post. I just thought I would let people know. We'll have a longer post probably tomorrow or sunday night, but the surgery is set for tuesday!

16 April 2009

Mountains and Valleys

Today has been one of those roller coaster days. First you're up, then you're down, there's a few twists, a couple loops for good measure, and then you're right back where you started and asking yourself 'was that it?' Well I hope so for now. We had some fun insurance things today regarding Isaiah's surgery scheduled for Tuesday next week. Apparently somehow Coventry thought we were doing it here in Atlanta which is not the case. This after yesterday we were alarmed to find out that Medical City in Dallas was going to be out of network for us. After many frantic phone calls, a bit of anxious wait and see, and a couple bouts of crying (some sad, some happy) we are fairly confident that almost all the providers will be covered as in network for his surgery come tuesday. Our last hurdle is getting the okay from Dr Leonard tomorrow that he's healthy enough for surgery.

So yeah, there were times today I thought I was going to have a heart attack. This whole surgery thing, though its been scheduled for a couple months, seems to have snuck up on me and I'm totally not ready for it. Maybe all this insurance stuff was subconsciously making me think it wasn't going to happen so I haven't really been readying myself for it emotionally. I've got the 12 hr drive to Dallas to psych myself up I guess. Plus we get to meet some more Apert families on the way there which should hopefully help some. Isaiah is 9 months old tomorrow and for all the stress we've been through I feel like he should be 20 something already but memory and experience wise it feels more like he's 9 weeks old.

This whole surgery in a different city 800+ miles away thing is kind of crazy feeling, but we know its the best care for him possible, but it seemingly is putting about 20 times the stress on Rachel and me. I don't know how to explain it, its just an odd thing. To think 2 years ago Rachel and I were still up in Minnesota, relatively carefree, not tied to anything, flexible, and free. Fast forward 21 months and we've got a house, one paycheck, and the worlds happiest baby, who just happens to have some serious medical maladies. It's quite the change. I wouldn't give it up for anything, but I'm still adjusting and I think I'll still be adjusting for the next 20 years. Anyways, we're trying to think positive and hopefully all goes well in big D.

10 April 2009

Slowly getting better / Asthma!

So it turns out when Rachel took him back to see Dr. Leonard earlier this week that he had gotten another bug as well as another ear infection! Sooo fun! Well we got the new meds and he just didn't seem to be getting better. He kept wheezing and breathing much louder than normal so Rachel took him back in yesterday. Dr Leonard did some more looking and tests and said his ear was healing, but that he should definitely get tubes put in his ears and that he has the Asthma. Its the height of pine pollen here which could explain some of it, but I'm fairly certain Asthma, among other breathing problems, is pretty common in Apert kids. We're just lucky he doesn't need a trach at this point, just more nebulizer treatments. They tested for RSV again and did the whole chest x-ray thing to be sure on everything and all came back reasonably well. We're just hoping he heals enough and in time for us to still have the surgery as scheduled in Dallas.
Maybe him being sick is a blessing in disguise though since there are still some outstanding health insurance issues to be worked out for the surgery.

05 April 2009

Still Sick

We just can't seem to shake this bug from Orlando. Either that or we've been hit with something else. Isaiah seemed to be getting better recently and the last couple days he's gotten worse again. His nose won't stop running, causing him to barely be able to breathe at night which in turn wakes him up all hours of the night. Now you say we should be used to this by now, and we are to some extent, but I've got something going on too. Starting last week my ears kept feeling full of pressure and I haven't been able to get them to pop consistently so I went to an ENT who gave me some Prednisone, the same steroids Isaiah was on a week earlier, to help with my ears. The issue with that is, they keep me up more than my normal insomniac self so they were prescribed with Ambien so I could get some sleep. Therein lies the rub. I'm out cold for the night, dead to the world on sleeping pills, and Rachel is left with the baby, so she's exhausted and getting sicker in the process. All of this now less than 2 weeks from when we're supposed to be going to Dallas for his first hand surgery. Fun eh? Rachel is probably taking him in to the Pediatrician again in the morning. We're hoping its just allergy stuff since the Pine Pollen is especially bad right now. It looked like a yellow sand storm out there earlier today.

Please keep us in your thoughts and prayers as always, and especially pray that everything works out with our health insurance as they're dragging their feet again on some of the things surrounding the surgery. We're stil very hopeful that we can make our way to Dallas in two weeks.