26 September 2008

Waiting for gas

So I'm stuck at a gas station waiting for them to turn on the pumps since the corolla is nearly on E and ATL is still admist a gas shortage due to Ike. They said about a half hr about 15 minutes ago, so hopefully we can get some gas soon.

As for the hydrocephalus the CT scans came back negative today, but it was still enough to stress both Rachel and I out beyond belief. We still need to watch out for it and I think we'll be going back for another CT scan in a couple weeks, but for now at least we don't have to worry about them sticking a shunt into his brain to drain the fluid.

I mean c'mon can anything else go wrong? We're finally coping better with everything after the surgery and then this scare happens.

In other news rachel called while I was waiting here and said Isaiah swung at some of his toys unprovoked today! We've usually had to show him first and then he'll copy, but Rachel saw him concentrating real hard and then taking a swipe at one of his toys!

Hydrocephalus?

Rachel was at Dr. Hudgin's this morning to get Isaiah's staples out of his head and he didn't like how big Isaiah's head was looking. It seems he may have hydrocephalus like they feared we would have to watch out for. Rachel is now sitting at Children's waiting to have another CT scan done and she'll be heading back over to the doctors office so they can look them over and determine what the course of action is if he does in fact show signs of water on the brain.

I'm still sitting at work here on my lunch hour, but its a bit nerve wracking. We don't know anything for sure as of yet, but I felt like I should do an update today.

Other than this little scare, everything has been going quite well with his health. The incision/scar is looking good, he's been a bit less fussy lately and he's been sleeping quite well. We actually had to wake him up for his nebulizer and feeding over night, rather than him waking up first.

Before this whole hydrocephalus stuff came up Rachel and I have both been beyond stressed out right now, but for many different reasons. Its hard for me to leave her to go to work, but she's had a ton of help from both her Mom and Sister and my family when they've been in town. Even with them aroudn though, he's been so fussy lately you almost have to have him in your arms at all times and that doesn't even work most time. She's also been trying to deal with all of the health coverage snafus and EOBs and bills and calls to doctors while home, but it's been difficult to fit them all in. Me I'm just my normal stressed out self at work, but I don't exactly get the relaxation at home that I used to since I try to help Rachel out as much as I can when I'm home so she can get a bit of a break. We both, in general, don't feel like we've gotten much of a break since he was born, but much of that is normal first time parenthood, but a good chunk has to do with all his 'issues'.

We holding up though, but we appreciate any prayers and good vibes you can send our way.

23 September 2008

Bands for Baby - Donations

I just thought I would let you all know our co-worker has set up an account for the Benefit concert donations and if anyone not here in Atlanta wanted to donate you can send a check made out to
"Bands for Baby" to REMOVED. This account will probably only be open until about November 1st or so and is only in relation to the concert, but all of the money will get to us to help cover his health care costs.

Rachel and I are getting deeper into creating an actual fund for him that would be a tax deductible charity. We thought originally we could make him a 501(c)(3) non-profit, but there's a whole load of hoops to go through and we've had to regroup somewhat.

UPDATE 01/17/09: While Bands for baby's account is closed you can donate to us through the info in this post.

22 September 2008

Quick Update / Benefit Concert


Sorry for the lack of posts this last week.
I've been swamped at work, we had an ER scare with Isaiah on Thursday due to a little cold and fever, and my Mom was in town this last weekend, but all is well right now. He's on a nebulizer for a while now to help his lungs, but he's really doing quite well. He got a bunch of vaccinations today and while he didn't like getting stuck according to Rachel, he's had no adverse reactions as of yet.

In other news a couple of my co-workers have set up a benefit concert for Isaiah to help us offset some of the health care costs we have. It's going to be October 4th here in Georgia. Mountain Park, GA to be exact. Click the photo of the flyer, for a larger image. We hope, if you are around here that you can make it!

14 September 2008

Photomania!



So we've got a huge update of Photos dating back to last week thursday when My Sister, her husband and my Dad came to visit. We also have an album of our trip to the Atlanta Botanical Gardens, as well as all the surgical pics from this week.

FYI some of the surgery pics are somewhat graphic. There's a bit of blood and clear views of his incision and staples. PG-13 - Viewer discretion advised

We're home!

We made it home yesterday around 3:30 and he's done quite well. We're already noticing the swelling going down more and what he'll look like (for the next 10 months at least until his next craniotomy) We should be able to get pictures up sometime tonight.

His sleep schedule is a bit messed up right now. He's only sleeping for 2-3 hr increments again, but its most likely because of the pain in his head. He is sleeping more often though since I'm sure his body is working overtime to fight off any infections and heal up his head. he's eating more now too which is good. We hope to have him back to his normal sleep schedule by the end of the week.

13 September 2008

Going home

We are in all likelyhood going home today. His fever has gone down and he hasn't been over 100 since around 4pm yesterday. His bandages were taken off yesterday morning and we got to see his new face. He does look different, but much of that could also do with the fact he's still very swollen and he will be for the next few days. He's got something like over 50 staples (we haven't counted them exactly yet) across the top of his head. When his hair grows in the zag zig scars should be nearly invisible, it just means he can't shave his head. For the time being we figured if kids looked at him funny b/c of his scars we'd tell them he's Harry Potter's long lost brother.
We can only sponge bathe him for a while now and his staples will be in until a week from tuesday. The thing we have to worry about now is hydrocephalus (water on the brain). Now that the pressure in his brain has been temporarily relieved there is the potential that his ventricles won't be able to handle all the waste spinal fluid so it could build up. We just have to monitor it and we'll have a CT scan in a couple weeks to take a snapshot.

In other news his development is coming along, We've been putting objects infront of him and trying to get him to swipe at them which he is finally doing. He's been going at his big mylar ballon and a couple of his toys on a regular basis yesterday. We have to hold off on tummy time until the wounds completely scab over, but we should be able to do many of the other things his PT and developmental therapist have recommended.

11 September 2008

The Day After

Well today has been interesting and eventful. I went back to work today and stopped by to visit Mom and Isaiah at lunch since I had a site visit nearby that I was able to schedule right after lunch. Hannah and Rachel's Mom spent pretty much the whole day here with her which was good because while he did well through the surgery, he's got a good ways to go for recovery.
He needed another blood transfusion this morning since his hemaglobin levels were low, but that's pretty common due to the bleeding involved in head surgery. He's been pretty fussy and up most of the day, but he hasn't needed morphine since yesterday at 4pm, just his normal dose of tylenol every four hours.
We did have a bit of a scare this evening though. About 8pm when they came to do his vitals they realized he had a fever of 101.2 and in all the fuss of getting him out of my lap and back into the crib his IV's came out of his arm. His antibiodics were being administered through his IV as well as supplemental fluids. They tried for an hour and a half to re stick him to no avail. He's been notoriously difficult to get blood out of and find veins (especially now since I think they've pretty much stuck him all over each of his arms and legs). His fever peaked at 101.9 at about 10:30 and we tried cold compresses among other things. He had a big BM shortly after the temp and all of that probably helped him get down to about 100.9 at 11:30. He's calmed down quite a bit, still doesn't have his IV's in but Dr Hudgins is thinking its going to be okay so long as he keeps taking his formula orally. Rachel's actually got him sleeping in her lap in the rocking chair in the room right now.
We're fairly certain we won't get a whole heck of a lot of rest tonight, but I'm glad we're here. i couldn't see leaving him here by himself. Before all of the fever and IV issues tonight Dr. Hudgins had said we could potentially take him home tomorrow, but I don't know if that'll will still be happening or if we feel comfortable enough taking him home by ourselves yet.

Thank you to everyone for all your prayers and thoughts these last few days. Its been tough, but we really do appreciate each and everyone's help.

10 September 2008

Surgery Update Numero Tres

We're in his room with him right now! He's rather puffy right now and his bandages come down to the tip of his nose, but he's here with us. Everyone says he's done very well. His bandages almost make it look like he's just got a big white winter cap on pulled low on his head. He's pretty quiet right now since he's still sleeping off some of the anesthesia. He's got an IV going to give him some extra fluids and he's on oxygen for the time being. Both of us are rather hungry since we could barely eat anything this morning and now that its all over we're realizing we haven't really eaten much of anything since 6:30 this morning and its just past 2pm now.

We're still trying to figure out the lay of the land here in the PCA section of the hospital, but it sounds like one of us should be here at all times to watch over him, which puts a little monkey wrench into our plan of getting Rachel out to the RPA 15th anniversary party on Friday since her parents and sister are going of of town for Rachel's cousin Apryle's wedding in Iowa.

We wish we were going to go, partially since she made it to ours in Minny and its always good to see family since we're so spread out across the country now, but its pretty much out of the question right now.

We'll figure out what we can do to get out of here to eat at least and we're thinking we'll switch off nights of who sleeps here with him so the other one can get a full night's sleep. Anyways we just thought we'd let you all know we're all back together again and he's doing as well as can be expected.

Surgery Update Part Deux

So the surgeons came into our little pre op room about 20 minutes ago to say everything went well. He's currently getting all bandaged up and going to the recovery room for about an hour. He had his sagittal bone completely removed, his coronal sutures opened up and they moved his orbital rims (the area around his eyeballs) forward all to give his little brain room to grow and make sure he'll be able to close his eyelids as he grows. He's got some plates and screws in his head that will all dissolve in time so there's no need for them to go back in to remove them. He also won't need a helmet as of yet since it would actually constrict things further and this surgery was all about opening things up.

He took about 180 cc's (6 oz) of blood and will probably need a bit more as he recovers, but he's doing so well they say that he'll probably get to skip the ICU and go straight to a regular room in the neurology wing. We should be able to take him home sometime this weekend.

As soon as we can we'll take some pictures of our 'new and improved' Isaiah!

We appreciate everyone's thoughts and prayers these last few days and know that it all helped him go through this all so smoothly for such a serious thing.

Surgery Update

Thanks to the generosity of my work, I've got a laptop with me today. Mostly to check my emails since I've got a project just about complete that needs quick answers. Unfortunately I can't seem to reply on my work's exchange server so I'm taking a break to update everyone.

First off we had to stop feeding him milk or formula at midnight last night so we kept him up as long as possible since he usually only sleeps 5 hrs straight after the first time we feed him and put him down to bed. Sure enough he woke up at 4:30 hungry and we were able to give him some pedialyte to hopefully tide him over, which suprisingly worked!

We've been at the hospital since 7am this morning and anethesia took him away at 9am to prep for surgery. They started the actual craniotomy at about 10am and we're just waiting now to hear when he's done. He'll go to the recovery room after that and then stay here for the next few days.

We were told yesterday he's not going to look the same as he did before, which hadn't sunk in to us before, so we spent most of the night and this morning taking pictures. We'll be taking plenty of after photos as well.

Yesterday we visited with the hand specialist which I'll update more about later.

Anyways, back to the waiting (and work too!)

08 September 2008

Short Update

Sorry for the lack of updates lately. We've been rather busy. I was in Arkansas for work earlier this week and we've had a ton of pre surgery doctors appointments and we've got more before his surgery on Wednesday. Additionally my Dad, my sister Becca and her husband Anthony were in town from Wisconsin and Minnesota Thursday through Sunday night which has kept us rather busy as well. We did take a ton of pictures and he had his first excursion out to the Atlanta Botanical Gardens where he did fairly well so we'll have an update with those pics and more sometime this week whenever I have some spare time to upload them.

I'm trying to work as much as possible today and tomorrow before the surgery in case I need to be off more later in the week, but as of right now I've just got Wednesday off for the surgery and tomorrow afternoon for a couple hrs for the appointment we have with the hand specialist.

On a good note he is starting to sleep longer in the nights the last couple days. His actually gone 5-5.5hrs between feedings sometimes overnight which has been a welcome change to our sleep schedule since it means we're usually only getting up once or twice in the night rather than 3 or 4. He also weighed in at 12lbs 3.4oz on friday, but that was with his clothes on so he's probably more around the upper 11lb mark. He was also 24.5in long which explains why he's not fitting in the 0-3 month stuff anymore.