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!