A few days later..

If you're new here, you may want to subscribe to my RSS feed. Thanks for visiting!

Jamie finally started talking last night at about 9:45pm. He was so glad that he could talk. He has been sick and can’t stay out of the bathroom. I don’t know why this happened this time and last time but he is recovering faster than he did last time, I think. He feels great now, and did yesterday morning but by the evening he was feeling horrible and wanted on his vent to lay down. That is very unusual for him to do during the day. I am hoping that tonight he won’t be feeling bad. We will see. I am exhausted and just can’t seem to want to wake up. I will have to lay down for a little while now. Have a great day

Post Footer automatically generated by Add Post Footer Plugin for wordpress.

If you enjoyed this post, make sure you subscribe to my RSS feed!

Night of Surgery

Well he had his surgery today. He was in there for about 2 hours again. We got good news in the respect that nothing has worsened. Nothing is better but nothing is worse either and that is considered to be good news around here. There is a little bit of bad news. Jamie can’t talk again. It is a struggle to know and understand what he is saying but we are making it through. He doesn’t remember the sign language that he learned before but I can read his lips to know pretty much everything that he says. There isn’t anyone else that can figure it out quite like I can but I have had experience. We have been through the “I can’t talks” more than once.
Jamie was really nervous this morning. Just as soon as his eyes opened, he starting gagging. He was so upset and now is so glad that is it all over. He teases Dr. Rodgers about wanting a tattoo while he is asleep. He usually wants a race car, of course. Dr. Rodgers told him that he was going to hide it and make him search for it. When he came out of the operating room his trach tie had broken and his trach was 1/2 way falling out. I had to hold his trach in until we got a new tie to keep it from coming out. My honey came over to the PACU (Post Anesthesia Care Unit) until Jamie came back from the OR. He got to see him right out of surgery but of course Jamie slept right through it. I asked him if he remembered him being there and he said yes but I am not sure that he did. Well, anyway, here is the picture of his tattoo. Thanks Dr. Rodgers, he loves it! I just hope that it doesn’t race around his stomach all night and keep him awake.. lol
Dr. Rodgers also said that he may “paint” his airway where all of this scar tissue grows with a chemotherapy, that I can’t for the life of me remember the name right now. He said that is may help the scar tissue from growing so much and there isn’t really any side effects. That sure would be nice if it works with out any side effects. We will see. We go back October 30th to schedule his next surgery. He said we should do it again at three months. OK, I am going to lay down now. I am really just exhausted. Have a great night.

Post Footer automatically generated by Add Post Footer Plugin for wordpress.

If you enjoyed this post, make sure you subscribe to my RSS feed!

Bronchoscopy Tomorrow

Well, here we are in the hotel again, awaiting his surgery tomorrow.  This sure does get hard to do sometimes.  Not so much the surgery, because he will be fine and when he wakes up there is a little pain but can be controlled easily, there is quite a bit of blood that comes from his airway afterwards and sometimes it is hard watching him wake up.  Sometimes he looks like he is having a seizure.  He isn’t having one and the nurses tell me that is normal activity when waking up from anesthesia but I can’t help but get this feeling in the bottom of my stomach when this happens.  His surgeon is GREAT!  Someone from his team always calls me and gets me up to the Recovery Room even before Jamie is out of the Operating Room.  He needs to be put on the ventilator as soon as he wakes up or he can have a little bit of trouble.  He is usually on some oxygen for a brief time while he wakes up.  I would have to say that the last year or so I can’t help but cry when he is out and starts waking up.  I will let everyone know how he is doing but I may not do that tomorrow, just depends on when we get home and how tired I am

Post Footer automatically generated by Add Post Footer Plugin for wordpress.

If you enjoyed this post, make sure you subscribe to my RSS feed!

Hi to everyone

Things are going along well here.  I hurt my back last week and didn’t do much this week.  The last two days I have been working on cleaning the house and getting some things done around the house.  We haven’t been in our apartment that long and it seems that a lot of “stuff” hasn’t gotten done yet.  We were going to move over last summer so a lot of my stuff was packed up and put in storage.  Finally it is all here and I have been going thru it.  I have been trying to find things to get rid of and get things thinned down some.  I am tired of having so much stuff. 

Jamie goes to the doctor this week for his follow up from his surgery last month and to schedule his next surgery.  I don’t know when it will be, most likely sometime in May.  He goes for three appointments on the 7th of May.  His first one is xrays of his back and then another hearing test and to see the doctor about the results.  Jamie and I both hating going but at the same time we love it because we get to see “OUR” honey… lol  Yes, he calls him that sometimes.  I have to say that is the only thing we have to look forward to on these trips.  We love you, honey!

Post Footer automatically generated by Add Post Footer Plugin for wordpress.

If you enjoyed this post, make sure you subscribe to my RSS feed!

Surgery today

Jamie had surgery today.  We got some pretty good news.  He had a hard time when he was waking up.  His chest kind of caved in and he turned blue and his saturations dropped to the low to mid 80’s.  He was almost biting on his tongue and he really scared me.  On the way home he was complaining of a really bad headache so we stopped and got him some liquid Tylenol and gave it to him.  He slept the rest of the way home.  I had to stop to suction him twice.  He got an Atrovent breathing treatment when he was in the recovery room because of the “spell” that he had.  The doctor said that he is really red and raw in his airway (must have a virus) and that there was a lot of granulation tissue at the top of his trach.  The tumors on the inside, as far as the compression, doesn’t appear to have changed.  That is GREAT news!  All in all it is good news.  It isn’t bad news and the virus will go away, we just have to keep doing what we have been doing and and add another inhaler to his medicines for two weeks.  We go back on April 17th for follow up.

Post Footer automatically generated by Add Post Footer Plugin for wordpress.

If you enjoyed this post, make sure you subscribe to my RSS feed!

Surgery tomorrow

Jamie is having surgery tomorrow.  We are here at the hotel near the hospital.  They give us a special hospital rate (a lot of the hotels around here do that since this is a college/teaching hospital city).  It helps that my honey works down here.  Jamie just loves seeing him when we come here.  He talks about seeing him for a whole week or more before we actually come down here.  Tonight we will get to have dinner with him.  That is great! 

We have to be at the hospital tomorrow morning at 7:30 AM.  There is another child (I assume) having the same procedure done tomorrow as Jamie and they have an arrival time of 6:30 AM.  They will be first and we are second.  An arrival time of 7:30 means they expect Jamie’s surgery to start around 8:30 AM.  Sometimes they are later than that when there is a complication with the case before us or an emergency in the night that puts him a little late.  I can’t say that it is “fun” when that happens but there are so many times that Jamie has been that emergency that puts everyone else behind that I understand what happens to the rest.  Even though the doctors down here say that they aren’t the reason that Jamie is still alive, that he shouldn’t still be here as far as they can tell medically…. I know that if it wasn’t for them, we wouldn’t still have him.  They gave us the chance to love him and take care of him and to keep him around. 

He is sitting on the other bed, watching SpongeBob SquarePants and licking the salt off a small bag of “Chex Mix” that we just got from the hotel snack machine.  It is funny to watch him watch SpongeBob.  He says all of the lines right along with the show.  We made a deal that he can watch tv until 8 PM and then it is my turn.  He was just asking what time we were going to bed.  My phone is vibrating.. my honey is calling… be back later.

Post Footer automatically generated by Add Post Footer Plugin for wordpress.

If you enjoyed this post, make sure you subscribe to my RSS feed!

Good News

    We went to see the doctor this Thursday and I am very happy.  He said that Jamie will most likely have the trach for a LONG time if not forever but that the tumors aren’t quite as bad as we thought.  He said that there is extra tissue there and it is being compressed but he doesn’t think that it will be compressed closed and that he doesn’t seem to be in any immediate danger.  YAY!  That is great news!  I am so excited that I can’t hardly sit still.

    I may be off the internet for a little while.  Just a week or two I think.  I will post the very day that I come back on so that everyone knows I am back.  We are switching over from local cable to Directv and the internet that I was going to have to sign up with was just too much every month, so I am shopping around and I have to get it hooked up so it may take a week or two.  Hopefully not that long.  See ya soon!

Post Footer automatically generated by Add Post Footer Plugin for wordpress.

If you enjoyed this post, make sure you subscribe to my RSS feed!

We go to UVA again

We have to go to UVA again on Thursday to see the surgeon about scheduling Jamie’s next surgery and follow up from the last one.  In the next month we already have 3 scheduled and will be making the surgery the 4th.  The last one is in March (5th) but from Feb 7th that is less than 4 weeks.

    The boys and watched the Super Bowl last night.  Jeremy was so excited to get to see the end of it before he went off to bed.  Jamie wanted the Patriots and Jeremy and I wanted the Giants.  Neither of them was “my team” but I liked the Giants more.  My friend called me at the end and said that the Patriots coach wouldn’t even shake the hand of the Giants coach.  I don’t know if that part was true or not because I didn’t see it, I was putting down a 9 year old to bed :-), but that is just wrong.  Poor sportsmanship, if you ask me… which of course no one really did lol. 

    Well, I won’t stay on here long.  That same 9 year old is getting ready for school.  Have a great Monday everyone.

Post Footer automatically generated by Add Post Footer Plugin for wordpress.

If you enjoyed this post, make sure you subscribe to my RSS feed!

Friday’s doctor visit

    Today was a hard day at the doctor’s office.  Jamie didn’t look so good today.  He was kind of pale and had huge circles around his eyes.  The nurse said that he was having stridor today in his breath sounds.  That isn’t a good thing to have, it means there are some breathing issues.  We took him right to the doctor’s office.

    The doctor saw him and said that he was not “sick” this time.  I told him about the report from the UVA surgeon and the MRI results.  He looked up on the computer and read part of the report.  He said that it was most likely the mass in his chest that was causing his problems.  He said that if I hadn’t had a “prognosis talk” yet then I needed to have one.  That he wasn’t saying it was going to happen this weekend but that I should enjoy every minute with him.  That in the next couple of years, we may not have him anymore.  That was really hard to hear. 

    I want to take the boys to the beach this year.. so I am going to start saving money so I can take them.  I just hope we can make it this year instead of next.  I have heard of a place called Plim Plaza in Ocean City MD that is supposed to be a good deal, so I think we are going to try to get something there this summer.  If they have any rooms left by the time we can make the reservations.  Keep your fingers crossed for me that I can do it for him this summer.  :-)  I thought about Disney in FLA but that is SO expensive and so far away and he can’t really ride any big rides so I don’t know about that.  I will also take them to the carnivals and fair this summer.  Make sure this summer is great… and next one too

Post Footer automatically generated by Add Post Footer Plugin for wordpress.

If you enjoyed this post, make sure you subscribe to my RSS feed!

One more trip tomorrow

We have another trip to Charlottesville.  Jamie has to see the Neurosurgeon tomorrow to get the results from this head MRI.  They called last week and told us that there didn’t appear to be any changes from the last MRI of his head but I really do want to know what those results are.  I sometimes hear one result and then from someone else we get a somewhat different result. 

I will post again soon.  Tomorrow mabye not because it is really hard to concentrate after the drive down there. 

Post Footer automatically generated by Add Post Footer Plugin for wordpress.

If you enjoyed this post, make sure you subscribe to my RSS feed!

Next Page »