February 28, 2007 7:45pm

I'm happy to say there isn't much to report right now.

Presley is doing wonderful! We couldn't be happier. He's eating well, gaining weight, and sleeping pretty regularly.

As mentioned before, we have his first follow up appointment at Shands in about 3 weeks. Next Friday he goes to the opthamologist to look at those crossed eyes.

I've updated the Presley image page with a before and after picture. A few things you'll notice ...

*His face is symmetric!!!!!!!!!!!
*He has an orbital bone above both eyes!!
*His forehead looks shorter and much more pronounced
*His face is rounder
*There is a little extra padding between his eyes ... that's where 2 screws are
*He looks very pensive ... this is probably a combination of him actually having structure around both eyes, and an overly pronounced forehead. The forehead was built a little higher to accomodate changes during growth. It should even out.

Look for more pictures over there as well.

February 13, 2007 7:25pm

New pictures of Presley, from yesterday, were posted today. The only thing that really stands out, are his eyes. His right eye appears to be lower than his left. I think this might be an illusion caused by the swelling on his right lid.

Outside of being fussy, he is healing so well! He is even down to minimal amounts of Tylenol for the pain. It's not required every 4 hours like it was a couple of days ago.

We scheduled his first surgery follow up on March 20th, and his appointment with the opthamologist on March 9th. Based on our initial visit with the opthamologist, it's possible that he might prescribe glasses.

We'll continue to post details as things continue to progress. This will probably be scaled back to once a week or so. We'll continue to update pictures as well, even if there is nothing to report in text.

February 12, 2007 11:32am

Presley is making a nice recovery. His swelling is fairly minimal now, and you can start to see some definition in the sides of his face again. This morning, I was able to see a bump on this side of his face that was a plate or screw. The neurologist told us that we would probably see those as the swelling went down, and we shouldn't be concerned. They will dissapear over the next year or two. Both his eyes are showing bruising, as well as the sides of his head near the incision. His eyes are still a bit swollen, so they look a little droopy.

Presley has had some diffculties with his eyes crossing. This became more apparent in the months leading up to the surgery. We saw an opthomologist, who suggested it might be related to far sightedness in his right eye. He wanted to wait until after the surgery to re-check him, in case the surgery had any impact. It doesn't appear to have helped at all, in fact it may be a little worse. It might just seem worse because of the new shape of his head. We are scheduling the follow up visit this week. They will probably want to wait until the swelling is gone from his eyes.

Our biggest challenge since we got home is getting him to sleep. He's waking up a good amount, and not getting the normal 10 hours of straight sleep that he got before. I'm sure he'll get back on track.

More pictures should be posted tonight.

February 10, 2007 7:04pm

Presley is doing excellent. His swelling has gone down even more. Both his eyes are almost completely open, and the bruising has gone from the black & blue colors to the yellowish brown. He's smiling again, and we're just trying to get him back into the regular schedule he had prior to the surgery.

We've added Day 6 pictures. If you were concerned about looking at the harsher pictures, these are very nice. They show his happy face, the little bruising, and you can see where the stitches run along his head. They are very clean and it is not frightening to look at.

February 9, 2007 10:26pm

Presley had a great trip home. He rested very quietly almost the entire ride. Considering he doesn't like car rides, this was great. His swelling keeps going down, and he's showing a little bit of bruising around the sides of his head near the incisions. We're actually suprised there isn't more bruising already.

He's been a little out of sorts since we got home. Obviously, his schedule is off due to the chaotic week. He was difficult to get to bed tonight, but again, that might be his being out of sorts. Just to be sure he wasn't in any excess pain tonight, we gave him a small dose of Tylenol with codeine that was prescribed by the nuerosurgeon. Hopefully, the need for the medication will be short lived, since he did well with normal Tylenol the past day.

There are some new pictures out from right before we left the hospital today. Those don't show how good he looks now. More pictures will be posted tomorrow evening so if you want, check back then.

As usual, thank you so much for your thoughts and prayers. While I say this a lot, I mean it more than you can imagine. I continue to say thanks everyday for the support we've had. Everyone who's taken the time to read about Presley is amazing. We feel loved!

February 9, 2007 9:06am

WE'RE GOING HOME!! The neurosurgeon just came in and gave us he okay to go home. They are filling out the discharge papers, and we'll be on our way!!

Presley's swelling continue's to go down, and he is looking great. The shape of his head, and the ridge over his eye are amazing. There is a symmetry that just wasn't there 5 days ago.

Presley made it through the entire night without any pain medication. He had a dose of regular Tylenol at 5pm yesterday, and didn't get any until 7am today. The 7am dose was primarily to help a slight increase in his temperature.

Later today, we'll be posting pictures from our departure from the hospital and our arrival at home. We'll continue to update the blog and the pictures as his healing continues.

Again, thank you for all your thoughts & prayers. You'll never know how much it's helped us get through this week!!

February 8, 2007 5:28pm

Presley has improved significantly since the last post. The swelling has continued to reduce, and he is now able to open his left eye most of the way. The nurse brought a suppository in about 1 hour ago, and he filled his diaper in about 30 minutes. His internals probably healed more than this over the last few days, but the last 3 hours have shown the most visible improvement we've seen. He's resting in his crib now and kicking his hands and feet around just like he does at home. We cleaned him up a little and got a shirt on him.

I'm updating some pictures of him from the last few minutes.

February 8, 2007 3:00pm

Presley continues to heal well. He is still very swollen, and extremely fussy. We've had to hold him non-stop for the past 15 hours or so because when he is in his crib, he cries. He's eating fairly well, just smaller amounts more frequently. One of the strangest things that I didn't expect is to feel movement in his skull bones. His head feels like it ways 10 pounds more than before the surgery, I'm assuming that is from the fluid\swelling. When you move him, you can feel a crunchy sensation. The plates in his skull are much looser, so they tend to rub together and cause this.

The neurosurgeon was in around 12pm today and thinks that Presley is doing well. He feels like the fussy behavior is due to constipation. The narcotics slow down the system, and it can cause constipation. The day of his surgery, he was given a medication to try and avoid the problem, but apparently it didn't do the job. So, they are giving him something to try, and if we don't get any results by later today we are going to request something stronger.

At this point, we are looking at being here until tomorrow at the earliest, and possibly into the weekend depending on how his pain management works.

On a bright note, our roomates have been released, so they are preparing to leave. Hopefully, we will have some peace during the night. No word on a new roomate.

Since there is very little change in Presley's appearance, we won't post any new pics. Hopefully, we'll have enough positive change to make tomorrow's pictures a joy to look at!

February 7, 2007 6:56pm

They removed Presley's drain tube about 2 hours ago. While it was there, you could see it under his scalp, as it ran from the top, right, rear of his head all the way in to his forehead between the eyes. Now that it's gone, it's just that much easier to see he is improving. The doctor's still seem to think we could possibly leave as early as tomorrow or Friday. With Presley eating, and peeing on his own now, those are the key elements along with the ability to control pain via oral medications. He has only been taking oral oxycodone and tylenol since early today.

The shared room has been insteresting ... trying to keep positive. Our roomates also have an infant, but they are MUCH younger and are spending a lot of time on the phone and with their TV up loud. Apparently, the male has to be in court tomorrow for the last time ... something about his probation. So, we are learning a lot about other people.

Back to Presley, he continues to eat and rest well. It does appear that his swelling might have slowed down, if not stopped. We are hoping this continues so he won't have to experience any more discomfort then necessary.

February 7, 2007 11:00am

It's been a long road since the last post. Presley's face continued to swell even more. I slept in a room for families of patients, and when I got back to the room about 5am, his face was unrecognizable. Both eyes are fully swollen shut. His ears appear recessed due to the swelling around them. His nose is sitting further back then his cheeks, and he is just overall puffy. We are hoping that either has reached it's peak, or is close to it.

The neurosurgeon came in around 8am and immediately removed all the lines and IV's, with the exception of the drain tube from Presley's head. He wanted Dana to hold him without all the excess lines in the way. Immediately, Presley began to eat. This was an unbelievably huge relief, since he has barely eaten anything since the surgery. Based on his eating this morning, they decided to keep the IV out and feel that he will be able to return to an oral pain medication. He was having problems taking it yesterday, so they ended up giving him morphine on a more regular interval. The neurogsurgeon also said the catheter & drain tube could come out. The catheter has been removed, but someone from neurosurgery has to come and remove the drain tube from his head.

On an excellent note, we were moved down to the normal pediatric floor about an hour ago. While it is a little more chaotic and noisy, and we have to share a room, we actually have 2 comfortable chairs. The biggest relief is that they feel Presley is in an acceptable condition not to have to be monitored as closely. The PICU has a 2 to 1 ratio of patients to nurses, the normal pediatric floor is 5 to 1.

Presley is also moving around much more today. Although his eyes are swollen shut, we are pretty sure he is awake some of the time as he is moving his body (kicking his feet and moving his hands around) like he does when he's awake at home. We continue to talk to him and reassure him that we are here.

The "turbin" around his head has been removed as well. I was really scared of what his wound would look like, but it looks much better than I expected. The incision runs ear to ear and curves some to allow the hair to hide the scaring later. The sutures are much cleaner and smoother then I had anticipated. Overall, I'm really relieved with how he looks.

The last 18 hours have been the most stressful for me since the surgery. While fully expected, the increased swelling has really affected me much more then I thought. It's less out of concern for his pain, we know that is under control, and more because it's hard to see your child go through all this. The swelled face is a a visual reminder of what he is going through.

I'll be updating the pictures later today, so check them out. Again, they are more intense than previous ones, and include pictures of the swelling and the incision.

February 6, 2007 10:16pm

As I mentioned in my last post, Presley continues to swell. His right eye is completely swollen shut, and his left is shut most of the time, but occasionally you can see a slit that he's looking out of. They are giving him oxycodone and tylenol to control his pain, with the occasional morphine when things get bad. Around 4pm they placed a catheter which will stay until they feel he is ready to pee on his own. Presley's nurses continue to be excellent, and we are blessed to have them. As it turns out, the nurse that has been here since 3pm shares a mutual friend of ours from Tallahassee. Let's play 6 degrees from Dave.

Tomorrow I'll post some more pictures of Presley. We're expecting his swelling to peak then, so the pictures might be more intense. The swelling is the bodies way of pushing fluids to the places that need the healing, so in this case, it's nothing to be concerned about. It's more of a frightening experience for him because he doesn't understand why he can't see. But it is comforting to hear our voices.

We still have no indication of when Presley might move to the normal pediatric floor. It's expected to be tomorrow, but we won't know until they tell us. We did take a walk down there and, while the rooms are shared, they appear nice and some rooms only have one patient in them. It did sadden me to walk through and see all the kids laying in hospital beds. While we don't know what they are there for, the fact that they have to spend time in a hospital has to produce some anxiety for them. While you pray for Presley, say a prayer for all the other children he'll be joining in the pediatric unit.

February 6, 2007 10:16pm

As I mentioned in my last post, Presley continues to swell. His right eye is completely swollen shut, and his left is shut most of the time, but occasionally you can see a slit that he's looking out of. They are giving him oxycodone and tylenol to control his pain, with the occasional morphine when things get bad. Around 4pm they placed a catheter which will stay until they feel he is ready to pee on his own. Presley's nurses continue to be excellent, and we are blessed to have them. As it turns out, the nurse that has been here since 3pm shares a mutual friend of ours from Tallahassee. Let's play 6 degrees from Dave.

Tomorrow I'll post some more pictures of Presley. We're expecting his swelling to peak then, so the pictures might be more intense. The swelling is the bodies way of pushing fluids to the places that need the healing, so in this case, it's nothing to be concerned about. It's more of a frightening experience for him because he doesn't understand why he can't see. But it is comforting to hear our voices.

We still have no indication of when Presley might move to the normal pediatric floor. It's expected to be tomorrow, but we won't know until they tell us. We did take a walk down there and, while the rooms are shared, they appear nice and some rooms only have one patient in them. It did sadden me to walk through and see all the kids laying in hospital beds. While we don't know what they are there for, the fact that they have to spend time in a hospital has to produce some anxiety for them. While you pray for Presley, say a prayer for all the other children he'll be joining in the pediatric unit.

February 6, 2007 3:03pm

At about 4am, Presley woke throwing up and with a fever. The nurse came in and they cleaned him up and gave himmedication to help stop the vomiting. He went back to sleep quickly, and has been sleeping most of the time. At about 6am, physians stopped by from both the neurosurgeon's and plastic surgeon's offices. Both were satisfied with Presley's progress,
however the plastic surgeon's assistant determined that there was still a lot of fluid coming out of the drain tube, so they want to keep the tube in for another day.

Leanne, from the neurosurgeon's office, arrived at around 9am. She is the RN that we've been working with since ourinitial visit with Dr. Pincus. She reduced the amount of suction on Presley's drain tube, hoping that it would reduce the amount of fluid draining, and felt like he should remain in the PICU for another day.

Presley is still having some difficulty with his fluids. He has yet to pee, and they went ahead and inserted a catheter to drain his bladder. They were able to get about 3.5oz to come out before removing the catheter. The hope was that getting it started would help him to continue to pee on his own. He is still taking in fluids, but has not been able to pee since.
At this point, Dana is holding Presley and he is breast feeding. He doesn't seem too uncomfortable and is letting her hold and move him around.

Presley is starting to experience much more swelling in his face. If you look at the links to his pictures, you can compare todays with the pre-surgery pictures and it's almost unbelievable that it's the same boy.

Check out the links for today's pictures.

February 6, 2007 12:04am

First let me start by saying thank you to everyone for your thoughts and prayers! You are an amazing group of family & friends! All those who have posted comments have really made us feel good.

Not long after my last post, we were allowed up to see Presley. We got into the PICU and there was our baby boy! He was sound asleep in a giant cage of a crib. With the swelling starting, the position he was in, and the change in his orbital ridge, it was hard to believe it was Presley. But, what a sight! Words can't begin to describe the emotions!

After spending time staring at Presley in amazement, one of the neurosurgeons that participated in the surgery arrived. He explained how well everything went and about the process they went through. He was very happy with how the symmetry of Presley's face was achieved.

The plastic surgeon arrived to check in later in the afternoon. He went through his part of the procedure, and gave me more updates on what to expect and how pleased he was with the results. I have to say, I felt a much softer side of him then the visit to his office. It was very reassuring.

Presley has been doing much better than we expected at this point. He's on a combination of oxycodone and morphine. The oxycodone is used to maintain a level of comfort, while the morphine is used less often for the intense breakthrough pain as it comes. He woke up a few times and didn't appear to be in too much pain. He did take a bottle early in the evening, although he only drank about half of it. They are currently watching his fluids because he is a bit puffy and isn't peeing. They were going to increase his fluids to try and ensure his body is getting what it needs. If he doesn't pee by himself, they will most likely end up putting in a catheter to help things along. For those of you who think this sounds painful, I can attest to the fact that it's not that bad when you are on morphine.

Presley did require more blood then I mentioned in my previous post. He used 50% of the blood donated by Dana. They are monitoring his blood to determine if he will need an additional transfusion post surgery. At around 2:30pm, he was right on the line of needing it, but they decided to give him a little time. As of an hour ago, he still had not needed it.

We are thankful for where we are in the process. Presley still has a long way to go before he is 100%. His face will continue to swell for the next several days, supposedly peaking on day 3. His eyes will most likely swell shut, so we will remain close to him and try to comfort him with our voices.

I've added some pictures of Presley, post-op, to the images page. Feel free to browse them, but I feel I must tell you that they are not very cheery. I've also restructured the pages to give them a little better flow.

I'll continue to write and post images as the weeks progress.

Again, we can't thank you enough for your prayers!

February 5, 2007 1:55pm

Presley is out of surgery and on his way to the PICU!! We won't be able to see him for about 30 more minutes. He required about 50% of the blood that was donated, and they are continuing with the remaining blood. Not really sure how much he will ultimately need. The doctor said that he did well and is moving around now. We'll be heading upstairs shortly.

So, six hours later and we are thanking God for getting us this far!

February 5, 2007 1:51pm

We just got word from the desk that they are in the process of closing Presley's incision. They've been working on it for about 45 minutes, and that's expected with the number of sutures that will be required. We are hoping to hear from the doctor soon! And hoping we can get to see Presley very soon!

February 5, 2007 12:23pm

We just received an update from the surgical nurse. They've separated the fused bones, and the plastic surgeon is working on the skull remodeling. They had to use a small amount of Dana's blood, so we are glad we had it here. Right now, there is no anticipated time frame for completion, we were just told that it would be a "while". Overall, he appears to be doing as well as expected.

February 5, 2007 10:23am

We just got a call from the surgical nurse. They are currently exposing the area to be worked on. They haven't started on the bone work yet, and the surgery is expected to go on for a good while longer.

The nurse did say that Presley didn't cry at all on the way back to surgery. Must be nice not to understand what's happening.

February 5, 2007 9:20am

The big day. We arrived at the hospital at 6am. We spent about 2 hours in the surgical holding area. At around 8am, the anasthesiologist came by and introduced himself. After a few questions, and some signatures, he and the nurse took Presley into surgery at about 8:15am.

This has to have been the hardest thing I've ever done in my life. Passing my little boy on to a stranger who was taking him into such a "black box" was unreal. After a small meltdown, we ventured off to get some coffee and sit in the waiting room. It's been about an hour now, and we expect an update somewhere around 10:30am. At this point, we're just sitting and praying.

I've added a few pictures of Presley this mornig in his gown. Just follow the image links to them.

February 4, 2007

We arrived in Gainesville around 4:30pm today. We found out earlier today that the Ronald McDonald house had room for us, so we chose to stay here instead of the Paramount Hotel that we had stayed in last week. Between it being very inexpesive (they ask for a minimum $10 donation per night), and it being about 1.5 blocks from Shands, we figured it was a good place to be. If you aren't familiar with the Ronald McDonald house, check it out at www.rmhc.com. Also, check out the pictures of the house we are staying at here.

We spoke with the hospital around 7pm, and were told to arrive at 6am tomorrow for the surgery. Presley is the first case, so we expect they will actually begin around 8am. Since the surgery is 4 - 5 hours long, and we have to get up early, we are going to take more time to write about the RMH tomorrow.

In the meantime, you can check out some more pictures of Presley here.

February 3, 2007

I've added some links to pictures of Presley. On the lower right is a new item called Images. Currently, the only link is Presley's Pictures, but next week more pictures will be added, including pictures before & after the surgery.

You can also visit davemarder.com to see pictures of all the kids.