6.28.10 Final Post

Testing thus far has turned out well, consequently, all signs are pointing to Nicho being discharged from the hospital this week. Nicholas has managed to rid himself of having to take the Norvasc (for high blood pressure) and is now solely on Coumadin. It's been 5 years that Nicholas has had to take multiple medications, so this is a big feat to whittle down to one med (Nicho's word for this is "awesomeness" (and yes, he is dictating to me :-)). However, the additional blood flow is only at about an additional 10% on the left side and minimal on the right side. Any additional blood flow is positive, but with time, we are hoping his lung response improves. The doctor mentioned that sometimes when the lungs haven't had flow for a while, they wither, so we are hopeful and looking forward to seeing even more of an improvement.

I didn't think Nicholas had this much weight to lose, but he has now lost 9 pounds since he came to the hospital for the PTE procedure. I just want to feed that boy.

Nicholas has bounced back so quickly, laughing a lot (despite the fact that this is painful for him) and making the best out of his situation. He has made a lot of new friends in the doctors and nurses who have worked with him and has thoroughly enjoyed their company (this is definitely one of the highlights of all his hospital stays).

With all this being said, this is the final post. Thanks for caring and following along Nicho's procedure with us.

6.27.10 Tests and More Tests

Nicholas had a CT scan today as well as yet another chest x-ray. Everything looked perfect. Nicholas has had air bubbles next to his lungs that were of some concern, but with the breathing therapy and oxygen, those appear to be gone. The doctors are still working out the proper anticoagulant medication dose and they are being cautious in monitoring for any new forming clots. I am guessing that he is on schedule to be released from the hospital within a week or so if everything continues to move forward with such positive results. Thus far, he has been "on schedule" if you were to compare to typical hospital stays for this procedure.

I neglected to mention he is NO LONGER IN THE ICU!! He has been moved to a regular hospital wing and has used his new freedom to roam the halls and stretch those legs! Nicho continues to have a healthy appetite and yet managed to lose 5 pounds! I suppose those first few days of surgery and sedation when he didn't eat anything had quite an effect. I'm confident we'll put some meat back on those bones in no time!

6.25.10 Chest Tubes OUT

Big news! The chest tubes are all now officially out! The doctor came into Nicho's room today at about 3pm (PST), snipped the stitches and pulled them right out. When she took all the bandages off, Sam told him he looked like Weapon 11 from the X-men (Seriously, I think it was meant as a compliment).

Nicholas has been all smiles (and his pain meds have been lowered, so the positivity isn't medically induced). He even went on a walk to the gift shop and then to the cafeteria before he became too tired and came back to his room.

My understanding is that the doctor will make an assessment tomorrow and it is likely he will be moved to a regular hospital room outside the ICU then. Nicholas will have more freedom to move around the hospital and the hospital grounds at that time.

Again, all good news.

6.24.10 Still in the ICU

Hello everyone! Nicholas and I are creating this post together! Nicholas regained his good appetite as soon as he was cleared for a normal diet. He is still experiencing quite a lot of pain, so the pain meds are being administered liberally (but closely monitored). The doctors had expected that he'd be able to get out of the ICU and walk around the hospital with support (like holding onto a wheelchair) by yesterday, but the pain from the chest tubes was too overwhelming. Hopefully the tubes will come out and he can accomplish this by tomorrow. The chest tubes drain the excess fluid from around the heart so it is important the tubes aren't removed too soon. Ah, well, looks like I am on my own writing the blog, Nicholas is fast asleep. The pain medications are keeping Nicho more comfortable, but, of course, he loses some of the sprightly personality. Aside from the pain issue, which should be temporary, his recovery is going well.

6.23.10 Day 3 Post Op

Nicholas is doing fantastic, all things considered. The doctors woke him up on day 2 and the pain medications kept the conversation interesting for quite some time. Also on day 2, he was moved to a chair, as you can see in the photo. This was a highly anticipated activity for the day and went very well. When Nicholas was extubated, he complained that he hadn't been able to update facebook for 3 days. We were thrilled to see him back to his normal self (despite his discomfort). Unfortunately, there is no computer access at the hospital, so we told him we would post something for him and when asked what he wanted posted, he responded, "I'm alive". So, there you go.

Today is another story. Today, Nicholas is experiencing much more pain. He had difficulty sleeping through the night and is battling to keep the pain under control. Apparently, the chest tubes cause this kind of

discomfort and we are hoping he will have these removed by tomorrow. We hear that day 3 is the worst, so we are looking forward to seeing his pain alleviated.

We do have before and after photos for those of you who enjoy a good war wound. Nicholas' serious surgery was complicated and unnerving, but he is having the best recovery we could have asked for. We were gutted to have to see him hospitalized again, but we are so pleased with this outcome. Of course, he is still in the Intensive Care Unit, and has a few hurdles to go. Not to mention, the doctor told him he can't lift anything over 10 pounds for months to come or he may end up in the operating room again (I am sure he will milk this doctor's order when he gets back home!).

The doctors are still getting the anticoagulants to a therapeutic level, but thus far, there are no issues we know of. All good news.

6.21.10 Post Surgery

Nicholas got through the surgery with no complications! This is as good as we could have hoped for. The surgeon pulled out significant scar tissue, comparable to what he considered would be the size of adult scar tissue. The doctor mentioned that Nicholas will see a drastic improvement in his lung functionality. I am hoping to get images of the scarring and of the removed tissue as well; it is truly impressive. One glitch that occurred is that with the old clots that were removed, there was fresh clotting. The surgeon felt this was weeks to months old and could be related to the Lovenox he had to switch to prior to the surgery. The docs are taking Nicholas off the Lovenox today and beginning a new medication (argatroban), hoping to curb this trend.

Nicholas is still unconscious and intubated and will be until at least tomorrow (Tuesday).

We did see Nicholas and he looks great considering the very serious and complicated procedure he just endured. We are so excited for Nicholas and this positive (and necessary) change in his life!

6.21.10

Nicholas is in the operating room now, the surgery should be well under way. The nurse woke Nicholas up at 5am this morning to begin preparations. The anesthesiologist started work on him bright and early at around 6:15 or so this morning. Of course, Nick's primary concern going into the surgery is only whether or not his iPod will be adequately charged when he re-gains consciousness. Ah, to be 14 again. (By the way, Nicholas's personal preparation for the surgery was to catch up on facebook and shave his head) Needless to say, he is in great spirits.

The surgeon will be making an incision from the base of the neck (top of the sternum) to the base of the sternum, then opening the sternum itself, putting Nicholas on a heart/lung machine while he "cores out", layer by layer, the scar tissue from the lungs. Amazing. Prior to doing all this, they have cooled his body so the blood flow is minimal and after the surgery, the doctors will spend some time warming the body again before he can finish in the operating room.

The doctors are very enthusiastic about the outcome for Nicholas and feel he has a better chance of success than their typical patient due to his age and (otherwise) good health.

We are looking forward to reporting good news soon! Thanks again for all your support everyone!

6.18.10 Taking it Easy

Nicholas is scheduled to be admitted to the hospital on Sunday, have preparatory labwork and another EKG done at that time. We'll also meet with the surgeons, pulmonary doctors and anesthesiologist. Monday is the actual date for the surgery - bright and early at 6am.

Today was a day for relaxing in the sun and enjoying the day. Nicholas went to the cove and enjoyed watching the seals and sea lions. Tomorrow is a blog holiday, so look forward to another post on Sunday! Cheers!

6.17.10 Sonogram

NOTE: For those of you reading this who are MD's, please skip to the next paragraph. The terminology was a little confusing to me, but the doctors cleared this up: the old hardened blood clots that never dissolved actually turn into scar tissue, so when I talk about the doctors cutting out the scar tissue, this is the residual clot tissue from the events that occurred in 2005.

Yesterday Nicholas had a sonogram of his legs, where, many of you may remember, he also had clotting. There was no evidence of residual clots in that area, consequently, a filter that they were going to surgically place today was not required! Nicho has had his share of surgeries, so I am sure he doesn't feel cheated! For those of you that don't know about a filter, this is like a miniature umbrella frame that they place in the vein/artery to catch break-away clots. In this case, they would have placed it to prevent break-away tissue from reaching the heart or brain as the surgery disrupts the tissue. (I feel like I should put a disclaimer here, that I am not a doctor, and this is my summarized interpretation of what is occurring in Nick's case, so please don't rely on my explanation should you come across this again in the future)

Every day, Nick looks forward to the simple things in life and enjoys them with zest. I love this about him! I've posted a picture from just after (YES, I said *after*) his heart catherterization. I think he actually enjoyed it!

6.16.10 Testing Day 3

I neglected to mention the big news from San Diego yesterday. We had an earthquake - 5.2 to be precise. Nicholas was watching the movie 2012 and the timing couldn't have been better. He said they were at the point in the movie where the earth was lurching (which is 80+% of the movie) and then, of course, the complex started to shake. Disney couldn't have done better!

Back to news of today...

Nicholas had a right heart catheterization, which went as perfectly as it could go. The doctor fed a camera through the catherter that was placed in his neck, down to the lungs and took pictures. The pictures were amazing. What the photos should look like: a full tree turned sideways, with lots of branches extending out everywhere, getting smaller and smaller. What the photo actually did look like on the right side: what my front lawn trees looked like after the big snowstorm this past January - only half of the tree was working (had blood flow). What the photo actually looked like on the left side: just one odd looking stem in the center and nothing else. It was heartbreaking.

Nicholas was so impressed with the pictures, he asked the doctor if he could have a copy and the doctor offered Nick the set he had been showing us.

After the meeting with the doctor, Nick wanted to know if that meant he'd be having the surgery and we explained that yes, that meant it was going to happen. He was really enthusiastic, saying, "YES!" doing the arm thrust victory move.

6.15.10 - Testing Day 2

Good news thus far (everything is relative). One of the concerns was that Nicho's heart may have been enlarged, however, the echocardiogram indicated that his heart is working normally. As the doctors suspected, there is a LOT of residual scar tissue from the 2005 clotting events. Consequently, 30% of his right lung is doing 100% of the work, which is clearly not optimal. So, the doctors have their work cut out for them (no pun intended). More testing is scheduled for tomorrow, but he is looking more and more like a prime candidate for the procedure.

We take great comfort in knowing that we have the best doctors in the world for this particular type of surgery. They are very confident and we can't help but feel encouraged by this.

6.14.10 Testing Day 1

Nicholas walked into the hospital relaxed, with sun bleached hair and a tan that makes me think whatever genes he has that do that for him were cruel to skip a generation (I suspect he was blessed with this from his father's lines). Needless to say, San Diego is treating him well! He did mention he can't get enough fish tacos, too; the new all-time favorite! Being the foodie that he is, he expressed enthusiasm for other foods beside fish tacos, like dungeness crabs, and we'll be going out for pizza later today. The hospital seems quite nice, with a piano in the lobby, palm trees and other accoutrements that make you feel as though it is more like a poshy hotel than a hospital.

He did well with all of the staff and made friends with the charge nurse when he asked about the availability of video games, movies and other necessary items for a teenage boy. Yesterday he had a VQ scan, chest x-ray and labwork. Today he'll be having EKG, echocardiogram, and a meeting with one of the many doctors involved.

6.13.10 Summer Compensation

All the kids look forward to summer with the anticipation of being relieved of studying, teachers, waking up before dawn and trading this in for lazy mornings, camps, lemonade and the company of good friends. Giving up summer is HUGE, so knowing Nicholas was going to have to trade his summer for recovery time after surgery, I took him on a cruise to the Bahamas for his Spring Break. I put together a few pictures I took, so take a look. Enjoy!

Tomorrow is his first appointment to determine eligibility for the surgery and the final determination will be made this upcoming Thursday.

More to come later in the week...

6.12.10 Lovenox

We are so fortunate to have so many people concerned about Nicholas, we appreciate all the kind words and thoughts. We've had such an outpouring of concern, that it has made it impossible to call everyone who would like updates personally, so I am going to have to do this in a very impersonal nature, the internet!

So, let me get started. Nicholas has been preparing for his upcoming surgery by changing the blood thinners he's required to take from long-acting Coumadin to a shorter acting Lovenox. This will help when it comes time for the surgery, he can stop the medication and won't bleed excessively (assisted with another technique where his body temperature will be lowered). He has had no adverse effects from changing medications, so we are off to a good start.

For those of you who aren't informed about the surgery itself, it is called Pulmonary Thromboendarterectomy or PTE for short. The doctors will be removing old, hardened blood clots from Nick's lungs. This surgery will be performed in San Diego, California on June 21st, as long as he gets through the eligibility testing next week without issue. Of course, I will post more on that later.