Leg still swollen and oozy

Macey's leg is not healing like we would want it to.

It is staying very swollen and numb.  I hope the numbness is from the swelling and that the feeling will return once the swelling goes down.  She is doing wet to dry dressing changes right now, is on Cleocin for an antibiotic and is supposed to be on crutches to not bear weight on it.  She refuses to use the crutches at school but does use them here at the house.  She returns to the surgeon again Monday for another followup. The stitches still have a while till they come out.

Meanwhile she is having heartburn from the Cleocin and some problems with her colon but that should also pass when the antibiotic is done.

In Recovery

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All done

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Ready to go

After her Versed cocktail.

Day of Surgery

Earlier this year Macey's right knee developed several bumps and we weren't sure what they were. We took her to a dermatologist about 3 weeks ago but could only get in to see the PA.  I took several minutes to explain that attempts in the past were unsuccessful when it came to freezing something off Macey and I also told him at length about her immune deficiency.  The PA seemed like he was listening and then proceeded to burn each of these spots.

It caused Macey a good deal of pain but we are always open to the idea that something that works on most everyone might one day work on her.

Three weeks later and we have infected bumps. Staph no less. More than likely MRSA (sensitivities aren't back yet).  She is on Doxycycline 100 mg twice a day until we know if the bacteria is sensitive to it.

What aggravates me the most is that when I took her in last Thursday to check on these red, oozy, nasty looking things the PA tried to tell me that is what they are supposed to look like due to the freezing (three weeks later no less).  "It is the body's way of fighting the virus. The immune system is just doing it's job"

WHAT!!!!

He didn't remember us from Adam from the last visit and tried to tell me this drippy knee was normal.  I quickly (and firmly) reminded him who she was and alittle about her and he reluctantly agreed to culture it although he was SURE it wasn't infected.

Needless to say after I called and left a message today to ask about the culture the nurse in the office returned the call to tell me that yes it was infected.

All of this was happening while we were at the surgeon's office getting Macey ready for surgery on the 20th for 3 places on her left leg.  So now she will need pre-op doses of stronger antibiotics and a dose the morning of surgery for the staph in the other leg.

This makes Macey's 3rd staph infection this year.

Great day at the Braves thanks to Starlight Foundation

Sunday we were treated to a great lunch and day at the Atlanta Braves.  Starlight Foundation is an organization that benefits young people who are affected by chronic health conditions.  Macey went to an Atlanta Hawks game last month with them (and us) and this past weekend they had a game at Turner Field.

Macey was able to hold out through the 6th inning before getting too tired to stay.  She loved seeing the game and meeting Jonny Vetters (relief pitcher).

Thanks to Starlight for their generosity.

Clinic day at Emory Children's center

At clinic today to follow up with Dr. Kobrynski and with Dr. Hansen in Endocrinology. Macey has been having times of being xtra thirsty and also having hese headaches they can't seem to attribute to anything. So we're here oday to restart her DDAVP and seevwhat she thinks. We're still waiting to be seen. It's been more than 45 minutes and as far as I know they weren't behind. There have been times in the past that the Emory staff wasn't keeping Dr. K aware of what patients were here and she never knew to come to clinic. It's very aggravating having to depend on clinic staff and not have your own private staff. But hopefully she'll be in soon.

Time to try allergy medicine

CT of the sinuses was clear. But today was one of her most miserable days. The ENT has started her back on Singulair and also wants her to take over the counter Zyrtec. He thinks she may have finally developed some allergies. If she gets... better on the two nose sprays (antihistamine and steroid) and the Zyrtec and Singulair then it is allergies and he wants to test her. We will run this by her immunologist in Atlanta when we see her in February. Macey was glad it wasn't anything requiring IV's or surgery but she really couldn't believe the CT was completely clear.

 

She's home now and in the bed but is just so pale. She's just kindof lost her spark.

Pediatrician and Prednisone

Macey had another bad night so Les took her to the pediatrician this morning for her breathing and cough.  She is moving air fine but sounds like she could be somewhat inflammed from the sinus drainage which is still pretty bad after two weeks on Doxycycline.  The pediatrician prescribed a cough syrup and Prednisone for her. 

She returns to the ENT tomorrow for her followup and has been scheduled for a sinus CT there before she sees him.  Hopefully we'll know something before we leave about how cruddy this is.

Home sick today

So the treatments have continued. Peak flows are not drastically down but the constant chest feeling and cough have her taking them proactively now.  She is running some low grade fever which could be aggravation.

She stayed home from school today because she didn't sleep well during the night and she wasn't up to going. School has 4 more months and this is her first day missed.  All of last semester she only missed one day so I hope this isn't something starting up.

She has been in bed all of the day minus the time my MIL brought her and Les food for lunch.

She is taking Tylenol and hopefully will feel up to going to school tomorrow.  She returns to the ENT on Wednesday.

Sickies have returned

So most of last year went off without a hitch.  Macey's stomach was thoroughly examined, deteremined to be lazy and a new med was started.  That's gone great.

Then here in the last month or so her sinuses have really been aggravated.  It started off as a simple stuffy head and nose sprays were taken.  Then the headaches started and the low grade fevers and finally a trip to the pediatrician's.  Macey was prescribed a Zpack and after completing that wasn't much more comfortable.

So off to the ENT's.  He looked her over, pronounced that she was still nasty and started her on Doxycycline for a while and a new type of antihistamine nasal spray.  So she returns this Wednesday for followup and if not looking much better will have a sinus CT done.

Last night she started complaining of having a scratchy throat and by dinner she was coughing. Peak flows dropped and this morning were down enough that she needed a breathing treatment. She has been in the bed most of today and the peak flows came up alittle but not enough for me. So we'll do them again around dinner and see if she needs another.  If no better by tomorrow then back to the ENT's and definitely getting that CT because I'm almost sure it's draining into her chest and she does not need an infection in there.

Also I'm going to get her to infuse a day early and I think that might help.