Sunday, February 28, 2010

Day +98 Improving, S L O W L Y.

Dear family and Friends this is a blog entry by Charles' father, Don.

Thanks to those who have left comments and thanks Dorothy and John for the card. And thanks, Harold for the visit. Charles gets meds all the time but there is none better than a FRIEND!! And, we are grateful that Karlin is feeling well, back to work and visiting.

There are many views of Mt Hood. This is another from this afternoon. With Winter's Spring here the views have been wonderful. Since OHSU is on the top of a tall hill there are good views of the city too.

Charles' blog has been "opened" so that anyone may add a comment.

I was in Friday when the Dr, Dr. Chan, made patient rounds and visited Charles. They have been concerned that is gut was not healing so they had given him a gut exam, colonoscopy, on Thursday. He has continued to have a raw gut and is still on a "nothing through the mouth" diet. They did the exam with the intent of cauterizing, to stop bleeding. The result was that they were surprised that his gut was healing except for a 7cm area that was raw. As a result, they were not able to cauterize. Dr. Chan said that they are going to take things slow in order to avoid a setback.

They have changed meds on him over the past week. They have given him a different anti-rejection drug and a different pain drug. They were concerned that morphine might be slowing his gut healing so they have been giving him Fentanyl. That is set up so it can be self-administered. They have been tryng to adjust the dosage on it so that Charles is not so drowsy. See the end of this blog entry for the side affects of Fentanyl. So, for the past several days Charles has been drowsy and when waking a bit disorientated. I can't find the detail sheet that the nurse gave me on the new anti-rejection drug. The side affects of that drug are NOT something that you want to read, often. Look for that in a later blog entry. At any rate they are working on his meds and taking his treatment s l o w. They look at his case EVERY day and adjust accordingly. The doctors and nurses are WONDERFUL!!!

Another thing that came up this last week was that Charles insurance ran out. He has very good insurance through his work and we have not had to be very concerned. Then, this last week the Social Coordinator, from OHSU, called and said that Charles' insurance for the transplant and related had maxed out. He has not reached his lifetime max, just agreed upon transplant max. So, I visited with the Coordinator, who is most wonderful and valuable, and she suggested that we apply for another insurance. I was able to cancel Charles current insurance and apply for the new. The agent I was working with received the last piece on info about 6:10pm on Friday, the 26th, last work day of the month. We needed to cancel by the 28th and start the new on the 1st of March. I think we did it. The new insurance is good and the premium is a few bucks less. How about that. Now I just have to verify that Charles was accepted tomorrow. And, I must add that the office people at his work in Eugene are WONDERFUL!! Thanks Natalie!!!!

Today Charles and I watched the Olympics - well Charles watched about ½ of the game. It was probably the hottest contest of the whole Olympics - Canada vs USA - Hockey. Wow, what a game! And, even though we are USA we thought it was neat that Canada won. They have been making such a thing of it the whole Olympics. USA can certainly hold their head high.

Thanks to all of you. We feel your interest, faith and thank you for your prayers. We know they are heard. dg

SIDE EFFECTS: (Fentanyl)
This medication may cause drowsiness, dizziness, pain at the site of injection, headache, nausea, vomiting, constipation, trouble sleeping or sweating. If these effects persist or worsen, notify your doctor promptly. Report promptly: mental/mood changes, tremors. Unlikely but report promptly: poor coordination, vision problems, difficulty urinating, unusually slow breathing, hallucinations, slow or irregular heartbeat, rash. Very unlikely but report promptly: seizures, fainting. In the unlikely event you have a serious allergic reaction to this drug, seek medical attention immediately. Symptoms of a serious allergic reaction include: rash, itching, swelling, severe dizziness, trouble breathing. Laxatives with senna may be helpful for narcotic-related constipation. Consult your doctor and pharmacist before use. If you notice other effects not listed above, contact your doctor or pharmacist.

Thursday, February 18, 2010

Day +86

Everyone remember this guy?

I think this guy is comin' back. :)

Charles' strength is improving a lot this week. I was unable to visit him for about a week, because I was sick, and the difference between last week and this week is so great! Most of what he's working on with physical therapy is the transition from sitting to standing. It's really hard work but he's pushing through it. Most of the work is being done by him at this point. Lauren (the PT lady) helps him by pulling a little on the belt while he stands, then mostly just helps him balance after that. He's kind of having to re-learn how to balance his weight during the transition and while standing. He did a lot of work with that yesterday so today his muscles were a bit tired but he still stood up a few times today plus doing lots of sitting exercises!

The biggest problem lately has been that Charles' stomach is very raw again, so each time he takes pills he gets bad cramping. He's got a new pain med that is actually a patch on his skin! Since the pills don't absorb well in his belly and morphine was making him feel more bad than good, they're giving this a try. So far it's going alright but he's having to take some additional pain meds when he gets bad cramping.

We've had a pretty nice lazy day here at the hospital. I've been crocheting and playing music and Charles has been reading, and now he's napping. It's a beautiful day in Portland and this new room is really a lot brighter and Charles has a much better view of Mt. Hood, so we're able to enjoy the nice day in our own way.

Hope everyone is well!

Love, us.

Sunday, February 14, 2010

Day +81 Saturday - Family

Yesterday, Saturday, Charles' (Aaron's) entire family made a visit. Generally we have stagered visits, coordinating with Karlin, so there is more coverage and not so many in the room. But, yesterday his whole family ganged up on him.
We always have to "dress-up" to be in the room. I forgot to have us lower our masks when the photo was taken. So, from left to right: Don (Dad), Matthew, Daniel, DeeDee (Mom) & Jonathan with wonderful Charles in the middle. It was nice to have us all together and share some time. The brothers are good friends and medicine for Charles.

Charles continues to have gut rawness. The few previous days were more so. DeeDee and Daniel visited today and he seemed to be doing better. He has come a long way in many areas but his gut has been slower to heal. The Drs meet and counsel each day, look at test results, etc and make a plan. So, we are hopeful for Charles' treatment and are hopeful that his body will heal.

Thanks for your love, support and prayers!! Don.

Thursday, February 11, 2010

Day +79 - Slowing Improving

Dear Family, friends and others: This is an entry by Charles' father, Don. First of all Charles was moved to another room last evening. It was NOT done for any medical reason but because Charles had been in the same room for soooo long that the room needed a good cleaning which also gives Charles a change and somewhat different view. He is now in room 6. This room seems to be brighter and his bed faces in a way that he can see out the window better. His veiw is east and the photo is NE with the Markham Bridge, I-5, over the Willamette River. Just to the right of the bridge, across the river is OMSI. Can you see the red smoke stack? Kinda small.

Charles' girlfriend, Karlin, has not been feeling well the past few days so has not been able to visit. So, he has had to put-up with family. Ho-hummmmmm.

He wants to thank those who have made comments to his blog entries. They get read and he enjoys them. Jonathan, he enjoyed the musical video.

Charles is slowing improving. Yesterday his physical therapist, Lauren, said that they are beginning to talk about him being released. She emphasized that it is NOT a rush thing but just looking to that end. In order for Charles to be released he has to 1.) take all meds by mouth, 2.) be able to physically be up and about and 3.) be able to eat solid foods. They have been working on all these things but his healing has been slow, specially his gut. He still has pain with is stomach/intestines - they need more healing. They had gotten him almost totally on pill meds and Lauren and Randi, his physical therapy team come each work day and exercise and and wear him out. He is still quite weak. Yesterday he practiced standing from a chair, walking with a walker and various exercises to strengthen muscles that are used in every day movement.

Today they are backing up a bit because of his gut. This morning he had a lower gut exam and just after noon they x-rayed his gut. Today he received a unit of platelets and a unit of blood, and he will receive another unit of blood later tonight. Still losing blood in the gut. Before the unit of blood they gave him Benadryl. So, now his is napping. They have also stopped giving him meds via mouth; back to IV. They think that the oral meds are NOT being absorbed completely. And, he is now back on a No Food by Mouth diet, just sips of water. It's now IV "mac & cheese." He is not looking forward, today, to his physical therapy team coming in - he is pretty tired. Generally, he enjoys their visits and knows their work is necessary. Finally, he is going to have a shower this evening. So, a full day.

And, hey Uncle Ron, the Udderly Cow mug is in the window. Mr. Moose is looking over it. And, Ron, I think that it is a reminder to Aaron [Charles], that he needs to get you something, reeeeally NICE.

With the "knock-out" meds being gone, Charles is alert most of the day. He also spends a lot of time in his chair. Overall he is improving; but his gut and strength are slow. I know he appreciates your friendship and love! He is a pretty social soul. Now that he is more alert it is challenging to deal with boredom. Thank you for your support. Oh, we did see the Super Bowl and we did "pull" for the Saints.

Thank you!!! dg