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Friday, June 12, 2009

More Harm Than Good?

A Tiny History Lesson - April 2009 (101)

Megan's central line was placed back in April when it was suspected that Megan had Neuroleptic Malignant Syndrome - a side effect of two medications she was taking - and, finally, a confirmed case of para influenza mixed with it. She went through 8 IV's throughout the course of a one week period and over 20 tries to insert new ones. She had bruises all over her body. The last few people who tried to put them in said, "There are no good spots, but I think I can try here."

Those statements were made not only by the nurses on our unit, but by emergency room nurses, and anesthesiology residents. The problem wasn't really that they weren't reaching the veins, but that her veins blew as soon as they went to flush the newly placed IVs. I finally told them that they were done poking her and that it was torturous to put her through so many "sticks" and convinced them that she needed a more permanent type of access.

The last peripheral IV placed just prior to her central line was done in day surgery. Dr. K decided to place this tunneled central line so that Megan could use it at home for comfort measures because she was most likely going to need hospice care, if she made it home at all.

As we all know, Someone touched Megan's body and she recovered enough to go home and try to make a "new normal" for our lives. We did not end up calling the hospice service yet because it appeared that we might be able to find that "normal." The central line was our precautionary "Safety Net." It is not that we didn't trust God to take care of her, we just know what her ultimate prognosis is and things have been very rocky this spring. The doctors did not expect us to take her home at the end of April. Dr. K "had no idea" why her status changed so drastically in such a short period of time.


Fast Forward to Today

We spoke with the Infectious Disease (ID) team just moments ago. They are saying that the central line needs to be removed. Megan has a very weakened immune system and these bugs are finding the line and growing - causing havoc in her system. She still needs ten days of IV Vancomycin and Gentomycin after it is removed later today. The ID doctors are going to recommend placing a pic line to administer the antibiotics. It is uncertain whether or not we will be finishing the antibiotics in the hospital or at home and then take the line out immediately upon finishing them. It seems that Megan's system is not able to tolerate having the line if it is not being used daily for the IV pain medications we were expecting, but not needing, up to this point.

We have already spoken with a resident from the surgical team and signed consent to take the tunneled central line out and place a new "temporary style" central line. They have also ordered her to be NPO so that they can do the surgery today.


Megan's Current Status

Megan finally went to sleep about 1:00am this morning after fevering and being agitated most of the day yesterday. They gave her all the extra drugs she can have last night, and she finally fell asleep a couple hours later. She is currently still asleep and fever free. The diahhrea has already started from the antibiotics and they have added IV fluids to fix her electrolyte imbalance.

Please pray that the surgery will go as planned, Megan will have no trouble with the anesthesia, and we will be home as soon as possible to resume our new home routine. We did have a 12 day period where Megan seemed fairly stable on this routine. We were going to take her to church last Sunday but on Friday she started having symptoms from this new infection. Hopefully, when we are done with these antibiotics, we can get back to the way she was in that 12 day stretch and maintain it.

Thursday, June 11, 2009

Happy Birthday, Sis!


Happy Birthday to you!
Happy Birthday to you!
Happy Birthday, dear D D!
Happy Birthday to you! (And many more!)

Love You, little sissy!

Bet you thought I'd forget from the hospital - Not a Chance!
Found a picture in my camera of you and Monica and took advantage.

Hope you had a great day!

Is it Up and Down or Round and Round?

Maybe it's both. I guess if the brakes are broken on a roller coaster it will perpetually go round and round and up and down. I guess it really doesn't matter. Either way, my eyes are are still closed. Now I know why I never liked amusement parks. It's all too unpredictable and scary. But, I know who has the whole world in His hands and that includes my entire family, even though we are not at home. Come to think of it, none of us are really at home. We have a mansion being built for us as we speak and it is built on the golden glory road and not some rickety old coaster. This is a promise I am holding onto. So, it doesn't matter if my eyes are open or closed at this point.

The reason I bring this subject up is because we were told today that the bacteria growing in Megan's blood cultures was not growing in the peripheral access (they drew from her foot), it came from -you guessed it- the central line. We will have more information later today or early tomorrow about the course of treatment they want to take next. They might change some antibiotics depending on results of lab experiments on the bacteria, schedule her for surgery to remove the line and put in a different type of line in a different place, or treat the infection with the IV antibiotics like we did a couple weeks ago. Are you deja vu-ing yet?

The Infectious Disease (ID) Dr.'s are being consulted on what we should do once the tests finish. If you are not deja vu-ing yet, read this post. Round and Round we go. Where it stops only He knows. And, boy am I glad. All this stuff is way too hard and very tiring.

Wednesday, June 10, 2009

Newest Developments

I just spoke with Ken on the phone and Dr. K has been in to see Megan. Here is what we have learned so far:
  • Megan already has a bacteria growing in the blood cultures they drew last night and they are starting her on amoxicillin and vancomycin (IV) until they find more out about what type of bacteria it is. Her other labs and cultures are not all back yet.
  • Her chest x-ray looks OK right now, even though she has a lot of mucus production and struggles to clear it. She needs a lot of suctioning.
  • Dr. K is going to make sure that Megan is very comfortable. She does not want her to moan or cry. She told the residents that she would rather have Megan sleeping than awake and uncomfortable.
  • Megan will not be released until she is fever free for 24-48 hours and her secretions are under control. As many of you know that we have not been able to achieve this for any length of time since the beginning of April.
  • Dr. K is more concerned about this infection, the fever, and Megan's comfort level than changing out her GJ tube or doing the sleep study right now. When all this is cleared, we will address those issues.

I am going to Indianapolis to be with Megan and Ken today. I have no idea how long we will be there. We are on the waiting list for a room at the Ronald McDonald House. Monica will probably join us when we get a room there. I am going to take a camping cot and stay in Megan's room with Ken. Ken has re-instated his family leave from work. I will continue to post updates about our trip as I am able.

Tuesday, June 9, 2009

Newer Developments

Megan is on her way to Indianapolis. The radiologist ran into some complications last week in sedating an adult patient with Mitochonndrial disease and has refused to place Megan's tube with sedation. The Dr. In Indy said "We love Megan and will take her." Before our pediatrician even told her what the problem was. They are also going to address the other issues listed in the previous post. Ken and Megan will be in the ambulance in about half an hour from now. I am a nervous wreck sitting here at the flea market. I can't get my van out until 5pm because it is parked on my rented space and there are hundreds of people in the aisles.

New Developments

Megan's G-J tube failed this morning when Ken went to give her medicine. Since she had a Dr.'s appointment alreaady, we figured we could just add that to our list of things to do today (She was scheduled yesterday because of issues resulting from her infections this week.). Because Megan has been having the spastic movements, she will need sedation to have the procedure to place a new GJ tube. This is because the "J" part of the feeding tube is threaded through her small intestines to bypass the stomach. The extraneous movements could cause the instrumentation needed to perforate her small bowel.

So, Megan is being admitted to the hospital for this procedure - it is also the safest place for them to protect her airway during sedation. They will also be consulting a pulmonologist regarding her secretions, her ability to cough enough to be suctioned, and keep her airway cleared to breathe properly. She may also have a sleep study. She is still being treated in South Bend right now. But we will be in close consultation with her Dr.'s in Indianapolis.

Please pray that things will go smoothly, Megan will be protected, and we will know what to do to help her as best we can.

Monday, June 8, 2009

"Not Me!" Monday

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

I am glad it is Monday because the subject on my blog has gotten rather heavy and I need to lighten up a little. So, I'm laying on the couch ready to reveal what I did not do (in my dreams).

It did not go shopping today and spend money on hand sanitizer again (this time for my purse) even though I have one in every room of my house in addition to having a big refill too. I was also not so excited when I thought I was going to pay $8 for two small bottles and the lady said "These are only 2 for $5. Would you like to add more?" Nope, not me. (Although, I was good and still only got the two I already had.)

Then, it was definitely not me who went to the Disney store and found more things to buy than my daughter who begged me to go in the first place.

I also did not go to lunch two times today - once with my husband and another with my mother - and get the greatest dessert. What kind of pig would do that? Nope, not me.

I hope everyone has had a happy Monday. This daughter did - in the new swimsuit I did not buy her today! She was dancing in the rain!