Michael's surgery went okay on Friday. It was supposed to take an hour from start to finish but it was well over 2 hours later when the surgeon came out to tell us Michael was fine and on his way to recovery. We had a little disagreement with the ...

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"Michael's Care Page" - 5 new articles

  1. Michael's doing well...
  2. It's been a while ...
  3. A change in plans ...
  4. I have been remiss in posting medical updates ...
  5. Did you hear ...

Michael's doing well...

Michael's surgery went okay on Friday. It was supposed to take an hour from start to finish but it was well over 2 hours later when the surgeon came out to tell us Michael was fine and on his way to recovery.

We had a little disagreement with the anesthesiologist right before the surgery. She insisted on using the anesthesia drug that Michael previously had a reaction to. She claimed she had "no other choices", which we know is not true since they give him a different kind in Rochester. In the end, she promised that she had another drug that she would give Michael that would counteract the anesthesia and he would have no reaction. So, we put our trust in her and reluctantly agreed.

When it took so long in the operating room, my mind was running wild with things that had gone wrong with the anesthesia and envisioned them afraid to let us see him. But that wasn't it. Apparently his port was stuck and they had to "bring up a special machine" to help them get it out. But they did remove it and Michael was finally resting comfortably in recovery. The nurses had told us we absolutely couldn't keep the port but the surgeon said we could and in the end, he brought it out to us. It is now on a shelf in Michael's room.

Michael was starving when he finally woke up from surgery and ate like a crazy man over the next couple of hours. Unfortunately, he didn't keep any of it down. The good news is that we still carry all of our nausea paraphernalia from chemo in the car so it wasn't a big problem. We stopped on the side of the road and cleaned things up with some snow and then Michael slept the rest of the way home. He felt much better by the time we got home.

Michael had quite a bit of discoloration from the blood pooling under his skin but that is pretty much all gone now. He had some pain Saturday and Sunday but hates taking medicine so he just tolerated it and he's now pretty much pain free. He was pretty quiet and favored his right arm over the weekend but isn't doing that so much anymore. The only left to do is wait for the stitches to dissolve (which should take up to 2 weeks).

I am glad this is all behind us because Michael had a VERY rough couple of weeks. He was difficult, overly emotional and - well - totally obnoxious. It was so out of character for him and I was hoping it was anxiety over the upcoming surgery. When I would ask him what was wrong, he would tell me he just couldn't explain what he was feeling. Since he woke up in the recovery room with a smile on his face, he is back to being my sweet, adorable little boy and I am immensely relieved.

The next stop in our journey is an MRI next month in Syracuse. I will try to post some pictures I would like to share in the next couple of days. But as I said last time, I am working on a different computer so I have to transfer the pictures onto this one (which involves a learning curve since it is different software). In the meantime, please keep Michael in your thoughts and prayers, JoAnne.
    

It's been a while ...

It's been a while since I posted. My laptop has been very ill with a nasty virus and we are redecorating our den so my desktop is not very comfortable to work on right now.

When I posted last, we were getting ready for Michael's latest MRI. I am thrilled to say that it was spectacular. To Dr. Korones's amazement, it looked like the tumor shrunk a little more. At the very least, there was still no active growth. Jeff made a comment that we were really nervous before the MRI and Dr. Korones was honestly puzzled as to why. We told him that we figured that the farther away we get from chemo, the more likely it was that there would be some growth. He said actually the opposite was true. The farther out we go, the less likely that the tumor would to start growing again. That was wonderful to hear. We also talked to him and he supported our decision to start having Michael's MRI's done in Syracuse. I took some comfort in that because I feel if he thought Michael was in any danger, he would want us to continue going to Rochester.

We are heading to Syracuse tomorrow for our first appointment there since switching away from Rochester. Michael is scheduled to have his port-a-cath removed at 11 am. If there are no problems with the anesthesia, it should be a simple procedure and we should be out of there early. We told Michael if he feels well enough, we will stop at Toys-R-Us on the way home so he can use a gift card he received for Christmas. Keep your fingers crossed that everything goes smoothly.

I will post again tomorrow night to let everyone know how he made out. Please keep Michael in your thoughts and prayers, JoAnne.
    

A change in plans ...

We were supposed to be heading to Rochester for Michael's MRI tomorrow but we had to reschedule. Michael has been fighting a high fever and a cough for the last 2 days so he can't have anesthesia. We have rescheduled for 2 weeks from now. But, the good news is Michael seems to be on the mend.

Michael had a great time playing soccer this fall.


His favorite position was definitely goalie.


Now it is on to basketball.


Michael had a great Halloween. He dressed up as Bumblebee (a Transformer - go figure) and actually got a lot of use out of his costume. First there was a church school party, then a Boy Scout party to which we took ...

... Monster Mouths (apples, peanut butter and candy corn) and ...

... and Freaky Fingers (cheese sticks and almond slices) to share.

And to wrap up the holiday ...


... a parade and party at school.

Then on Saturday, Jenny and Ralph made it home. Before heading out to Trick or Treat, Michael and his big sister crafted this masterpiece ...




On a side note - Michael received his beads from Beads of Courage today. If you haven't checked out their website, click on the link in my sidebar and check them out - it is an incredible program. Michael and I will be stringing his beads to represent the time line of events he has gone through for the last 2 years. I will post a picture when we are done.

We have our appointment with Michael's neurologist next week, I will let you know how we make out. Please keep Michael in your thoughts and prayers, JoAnne.
    

I have been remiss in posting medical updates ...

I noticed I haven't posted any medical "news" in awhile and thought I should catch up.

A couple of weeks ago, Michael went to see his pediatrician, Dr. Swan, for his annual checkup. She thinks he is doing great and it was great to see her (she is still my hero). It was also time for Michael to get a couple of vaccinations.

Unfortunately, when the nurse came into the room with the needles, Michael had a complete panic attack! For a little boy who has had in the neighborhood of 75 needle "pokes" over the last 2 years with nary a complaint, his response was very unexpected and totally heartbreaking. Once they were done though, Michael calmed right down and admitted that it wasn't as bad as he thought it was going to be.

Then, last Thursday, the 8th, Jeff and Michael made the trip to Syracuse for Michael's last antibiotic infusion. That means Michael has been off chemo for 6 months and all of the chemo drugs should be out of his system. We are going to Rochester the first week in November for Michael's next MRI and if everything is stable, his port can come out anytime after that. And since I am in a constant state of worry about his port, I will be thrilled.

For instance, Michael loves playing soccer and his favorite position to play is goalie. Two Saturday's ago, Michael stopped the other team from scoring by taking a soccer ball to the face. The poor thing dropped like a stone and the coach thought he was out cold. But, he got right up and finished playing the game. Of course like all parents, my heart stopped and I was holding my breath until I was sure he was okay. Unlike most parents (who would have been upset that their child took such a hit to the face), all I could think was "Thank God it didn't hit his port."

Shortly after school started, we received a letter from the school's occupational therapist. She said she noticed some deficits in Michael's fine motor skills and recommended she work with him to see if we could refine those skills. She doesn't think it is serious and isn't even recommending we do any special testing at this point. But she is aware of Michael's medical history and thinks we should be proactive as opposed to reactive.

After I calmed down and started breathing normally again (okay - I admit I overreacted but after all this is something neurological we are talking about), we agreed to let him go to the special classes. He actually loves it! They do crafts and play games and after each class he looks forward to the next time.

But in light of this development, I have made an appointment to see his neurologist when we head to Rochester next month. And while we are there, I intend to restate my arguments on why we should try taking Michael off Tegretol.

I talked to Dr. Swan about it, and she agrees with me that trying to wean him from the medicine with the understanding that we would put him back on it at the first signs of seizures is a good idea. She also pointed out that Jeff and I are the parents and the decision is ultimately ours and not the doctor's. "Yes" I told her but doctors have a way (intentional or not) of making you feel like a rotten parent if you go against their advice. (Remember the surgeon that implanted Michael's port?) Keep your fingers crossed that I can be persuasive this time.

I guess that is all the news for now. Until next time, please keep Michael in your thoughts and prayers, JoAnne.
    

Did you hear ...

... about the six year old boy that was suspended for taking a knife-fork-spoon utensil to school? Well, last weekend Michael found a swiss army knife that belongs to Jeff and was fascinated with it. So, I thought it would be a good idea if we have a discussion on how taking something like that to school would be a big no-no. It went something like this:

Me: "Hey Buddy, you know that knife of Daddy's you were carrying around last weekend?"

Michael: "Yes."

Me: "You know not to take anything like that to school, right?"

Michael: "Yes Mama. Why?"

Me: "Well there is a little boy the same age as you who took a camping utensil to school and he got in big trouble because it was against the rules. And now he can't go to school for a while"

Michael: "Oh." (He thinks for a minute.) "Why can't he go to school?"

Me: "Because the rule says that if you bring something to school that could be considered a weapon, you get suspended. Do you know what suspended means?"

Michael: "Yes. Dad told me."

Me: "Good. We don't want that to happen to you."

Michael: "Don't worry, Mama. I got in trouble in Kindergarten for taking a screwdriver to school and I won't do that again."

Me: "Ouch." (That is from the pain in my neck from whipping my head around so fast to look at Michael.) "You took a real screwdriver to school? When?"

Michael: "Last year and the teacher told me not to do it again, so I won't."

Me: "Well, good. I am glad we had this talk."

And, since Michael has carried tools around since he first learned how to walk (although they are usually toy ones), I am extremely grateful that Michael's school apparently has a lot more common sense than that of the little boy in the news.

Please keep Michael in your thoughts and prayers, JoAnne.
    

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