TMJ Update

Hi. There have been some developments with Harlie's TMJs since I last blogged. 

Here's a recap:

April 2021 - She had her first prosthetic TMJs placed on both the left and the right.

May 2021 - a growth appeared at her incision sites, I took her to several doctors to try and find out what it was. Just yesterday I found a clinical note from one of the docs we visited during this time period. Her note said that mom was overwhelmed and teary at times. Yes, it was a VERY hard time because people were still nutzo about Covid and getting Harlie in front of people with a serious issue was such an unnecessary battle. 

August 2021 - I finally got her into the OR with her ENT in DC. He said it was an abscess/infection. They gave her a PICC line and a two-week course of IV antibiotics.

September 2021 - the abscess returned, so infectious disease put her on Doxycycline. Over the next year, we attempted to take her off Doxy several times, each time the infection returned, so she went back on Doxy. 

November 2022 - the infection returned on the right side only, despite being on Doxy. After consultation with several of her doctors, the decision was made to return to Boston to remove the TMJ.

April 2023 - the right TMJ was removed since that is the side where the infection re-appeared. The surgeon said the right side had a track and we never would've beat it with antibiotics. He put a spacer in it's place. 

October 2023 - a new right TMJ was placed, and the left TMJ was repaired since he found it to be dislocated.   

December 2023 - We were finally able to stop the Doxy! Yay! This was great, because by November, it became difficult to get her Doxy at all. For some reason, there was a low supply, and I would have to go to several different locations to get what she needed. Unfortunately, I've noticed that there's been a major problem with getting any kind of customer service when it comes to medication. I get that the pharmacists are over worked and under paid, under appreciated, etc. But, at the end of the day, my kid needs this medication. I know that they don't know why she's getting this medication (I think a lot of teens take Doxy for acne) - but they really do not care if she goes days or weeks without what she needs. I'm the one who has to figure it out, feeling like I have no help. This became a huge stressor and just remembering it now as I write this makes me so mad. I mean, I am at our local pharmacy so often and I see the same people (for the most part) over and over and there is never any type of recognition that they've ever seen me before. Or that we just had the exact same conversation about trying to get Doxy two weeks ago. I just don't understand. 

So, when we were finally able to STOP giving her Doxy, we were THRILLED. It was a little scary at first. But, her surgeon said he felt really good about how the surgery went and he didn't have to go into her mouth this time, so the whole site was cleaner, in general. 

I'm guessing that you might know where this is going...

On the 20th of January, I was getting Harlie ready to go to Caylee's baby shower. I looked at her incisions (which is now just something I do on a regular basis) and noticed a bubble/blister looking thing on her left side. I really can't describe how I felt when I saw it. Honestly, I think I just couldn't deal with it. I told myself there was NO way this was happening again. It was just some other weird thing. 

But it isn't. I know it. It looks exactly like the very first growth that appeared that summer in 2021. I just can't believe it. I mean, how can this be? ARE YOU FUCKING KIDDING ME?! Can this girl catch a break, please? OMG! I just don't know how much more we can ask of Harlie and her skin, which has been cut so, so many times. Too many times! Under her jaw is all scar tissue at this point. 

I am feeling so overwhelmed right now. I just don't know how we are going to do this again. I don't. It is too much. I'm telling you - it is TOO much. I just can't even think about them having to replace her TMJ, AGAIN. I do not ever want to return to Boston Children's Hospital. No offense to BCH, but I am so done going up there. If I had known at the beginning that we would STILL be going up there 12 years later, I don't think I would have ever started. 

I just want to say that going out in public (or a baby shower to celebrate someone I love) while I'm trying to process heavy shit is so fucking hard - and it is getting harder. It is like I have a bucket of water and everything is fine until it fills up too much, and then it starts to spill over, unpredictably. I want to emphasize that word, because I go out with full intention of being able to keep my damn water in the freaking bucket! So, instead of being like, yes, the food is so good, your hair is looking fabulous, I love your sweater, etc. I'm like Harlie's infection is back, I shouldn't have brought her, she can't hear a thing in this loud room and no one can hear her so she's just sitting there and she can't play these shower games and my heart is breaking into a million pieces.  Like, I'm carrying it and it is fine until I bump something then I spill water everywhere and then, I'm like, oh shit, sorry I got my water all over you at this baby shower. Then, after I get home I think about it and I feel terrible that I spilled the water and I beat myself up that I wasn't stronger to keep my water it in the bucket. 😑 Luckily, I was with great people and I know they are okay with me spilling my water on them. But, I still feel terrible about it all. I want to keep my water in the bucket. This is one thing I'm working on with my therapist - being kinder to myself. I am totally fine if my loved ones accidentally spill their water. I shouldn't have different rules for myself. These are all the thoughts that run through my head, on repeat, and it is exhausting. 

Anyway, it took me to the 24th for me to email her ID doc and send her pictures. Not that she needed to see them, really. I mean, they look exactly like what she's seen before. Anyway, she emailed me right back and called in a script for Doxy. We scheduled a zoom meeting for the 26th (Dr. Hahn is in DC). 

Ugh. I just can't. On the 26th, I noticed that I had not heard anything from CVS (she called it in on the 24th), so I called. Fifteen minutes later I get someone on the phone. They only have two bottles of Doxy and they don't know when they are getting more. "Its on order" she said. I've heard that before. She told me that a different CVS has four bottles and another one has six. I just can't do this again. 

Another update I don't think I've talked about is how we had to start a beta blocker for Harlie's heart issue that came up since August or so. It was an issue in Boston that bought her a longer stay in the hospital. Anyway, it is a compounded medication, which requires us to go to a specialty pharmacy (not CVS). So, I suppose if I'm already going to a different pharmacy, maybe I should send the Doxy there. So, I call and a REAL PERSON answers the phone! He said they have to order it and would have it the next day. Also he said they will try to make sure that they have it when she needs a refill each month. So, I sent an email to her doctor asking her to send the script there instead of CVS. While I am certainly NOT happy, I do feel better about not having to deal with CVS regarding this particular medication. 

Also, on the 24th, I was at work. I missed a call and I recognized the number, but couldn't remember why. Then I got an email message to call the nurse at Harlie's school. Ugh. I know it sounds crazy, but for a few seconds I sort of panic. I mean, it's a "controlled" panic, in that I don't think anyone would be able to look at me and know that I'm freaking out on the inside. But, I was. The school nurse put Harlie's nurse on the phone and she told me that Harlie was having some shortness of breath, (or labored breathing? I can't remember) a scratchy throat and increased secretions. But, her sats were good and she didn't have a fever. She said they had been sitting in the clinic for a few minutes and she seemed fine and she said she wanted to go back to class. So, they did. 

But, when she got home, her voice sounded really strained and she didn't look like herself. She ended up staying home Thursday and Friday. I can't believe it took this long to get to her. Crazy. Seems like we aren't even giving it to each other. There are days in between one feeling better and one feeling bad.

We had our zoom meeting on Friday. I like this doctor so much. I guess if you're going through something crappy, it is really nice to have good people in your corner. She asked me when I first noticed the abscess, and I had to admit that it took me several days to let her know. I just knew there was no denying it once I told her. She said she got it, which is one of the reasons why I like her so much. I wasn't able to actually start her on Doxy until the 27th. She said that I need to check in with her in two weeks. Hopefully the abscess will respond. I'm not even going to talk about what we do if it doesn't respond. We'll have to cross that bridge when we get there. 

Since January has been so crappy, I haven't taken any pictures. Well, except of the dogs. They are always cute, no matter what is going on in this crazy house. So, here's Mabel, since it has been a while.

That's my blanket she's stealing, by the way.

Mabel staring down a squirrel.

As always, thanks for reading! 

Much love,

Christy xo

Wednesday Update

Whew!  Lots to cover...

Cultures from the abscess have grown nothing.  That doesn't mean that there aren't any bugs.  Clearly, something was growing.  But, since she was already on antibiotics for two weeks, it skewed the results.

I'm finding it hard to organize my thoughts to make all of this fairly simple to read and to understand.

Docs Involved in Harlie's Care:

Plastic Surgery
General Pediatrics
Infectious Diseases
Pulmonary
Cardiology (limited, but here should we need him)

Some of these specialties have several people - like an attending, fellow and resident.  Throw in that the weekend teams switched on Monday to new people.  So, the number of people I've spoken to while here is quite high.  The number of times I've repeated myself and answered the same questions is also quite high.

So, we had a plan over the weekend.  We were all on the same page.  Then the teams switched and we had to start all over again.  The plan was that she would get a PICC line (IV access you can go home with) on Tuesday and would remain on IV antibiotics for several weeks.  What meds and the time on them was up in the air until the cultures came back.

On Monday, I spoke with the ID docs (the resident and fellow) in the morning.  Plan still the same.  But later that day she lost her IV.  The nurses tried twice to get another one in, but Harlie fought so hard that they couldn't do it.  Then they gave her some Versed to calm her down and tried again.  Still couldn't get one in.  At that point, they were done.  They weren't going to try anymore.  Which is good, because that meant I didn't have to fight that fight.  It's very hard to know what to do as a parent - on one hand I want to say, "stop, that's enough" and on the other hand, I want her to get those IV meds!  Both are important.

They called ID and informed them of the lack of IV access.  By this point, she had missed a dose of each.  The attending ID doc switched her IV meds to g-tube meds (Augmentin).  Then, an intern (or a resident?) came to tell me that the plan changed.  They were just going to leave her on Augmentin and were not going to give her a PICC line.  This decision was based on the fact that the culture was coming up empty.

I had not ever met the attending - so I asked to speak to him.  He and the fellow came to talk to me and we went over some things.  He explained that the culture didn't grow anything, so it was probably a superficial infection, which wouldn't require IV meds.

I said I thought that would be under-treating her.  The culture not growing anything doesn't mean anything to me.  Meaning, that I don't care - we should base our decisions on the whole puzzle, not just that one piece.  Plus, if they are wrong, and the infection comes back, then it's Harlie that pays the price. And it would be a hefty one.  And they are not sending me home with a kid who doesn't give me any indicators that something's amiss (she doesn't get fevers, she doesn't complain about pain and she is fine one night and has an abscess the next morning).  AND, let's not forget that we are trying to buy time with this hardware in place so we can leave it in for as long as possible.

Worth the risk?

I don't think so.  So, I told him that he needed to discuss it with Dr. Rhodes since she is the only one who's seen the infection on the inside.  If she was fine with it, then I would be, too.  Don't get me wrong, I would love it if it meant Harlie didn't need to get a PICC line.  But, my gut told me that would backfire.  

The next thing I knew, Dr. Rhodes came by.  She said, "The plan is for her to get a PICC line on Tuesday."  Too funny.  But here's the not funny part... she said that she needs to look at her wound and change her dressing at least every other day.  Which, right now, means sedation, which she said she cannot do as an outpatient.  That means that she needs to stay inpatient until the surgeon can close her wound.  She said it could take up to two weeks.  Gulp.

Our nurse that day was standing with us when she told me that and I was speechless.  She looked at me and said, "I'll move you into the corner space."  The corner space here is the only room in the unit.  It has walls and a door, and the only window in the unit.  We were moved a few hours later.  And being in this room does make being here SO much better.

That night we had a visitor...

Donna and Harlie

My friend Donna came by and we had dinner together.  After she left, Harlie started to have some respiratory distress.  She was working really hard to breathe and her oxygen requirement went up to 75%.  For the next couple of hours they tried different things to help her - chest PT, bagging her (using an ambu bag to force air into her lungs), lots of suctioning, and breathing treatments.  They called the PICU charge nurse over so she was aware of what was going on, just in case they had to send her to the PICU.  After all that working, they finally got her straight and back down to 50% oxygen.  It was late, but her night nurse was good and told me to go home so I could get some rest.

Tuesday, August 27

She got the PICC line in the morning.  When she was transported into Interventional Radiology, she looked really scared.  Everyone was wearing scrubs and masks.  She started to cry and tried so hard to hold back the tears.  I told her it would be okay and that she would go to sleep and she would be back in her room soon.  You should have seen how brave she was!  They let me transfer her to the table and let me stay with her until she fell asleep. She is such a good girl.  Really.

Smiling for me, despite being scared.

They asked me about a preference for a PICC line placement.  I asked them to try her left arm first.  Whenever she has an IV in an arm, she acts as if it is broken and refuses to use it.  Or she tries to hide it from people so they can't mess with it.  And with her starting school soon (hopefully) I want her to be able to write with her right hand.

The surgeon went into IR and cleaned her wound and changed her dressing.  She removed the drain line that was in there, so that's a good sign.  She said the site looked clean.  She packed it with a dressing that changes color when it touches bacteria.  It was white when she got back to her room and by that night, it was purple.

The problem is that she would rather leave the site exposed to air - but due to it being located between her drool and trach secretions, that's not an option.  And she said you don't close a wound that has an infection.  But, in her case, again because of it's location, she's going to have to close it.  Which is why she's playing it safe and taking all these measures to make sure she does everything she can to keep this infection from growing.

While Harlie was in IR getting all that done, I returned to her room.  After I got there I realized I should have gone outside for a walk or something.  But, I wanted to be close just in case they called me or something.  So, I started to try to get somethings done.  One thing on my list was to let Harlie's hearing impaired teacher know that we have to cancel our session for this week.  I sent her a text and she replied right back that she was at the hospital!  So she came up to visit.  It just so happened that she was here to observe a cochlear implant surgery and baha surgery.  How crazy is that?  Since Harlie wasn't here when she came up, she said she was going to come back that night to spend some time with her.  How awesome is she?!  I've always known we were lucky to have her!

She returned that night around 6:30 or so.  And her and her husband stayed with Harlie while I went with Tom, his mom and the boys to dinner.  A few hours earlier I started to feel bad.  By dinner I was feeling very crummy.  I know have a cold.  Crap.  We went back to the hospital and Cheryl and her husband were still there!  She is so good to us!  We spent a little time with Harlie and by 8:30 or so, she was ready to go to sleep.  I felt so bad, so I went home too, so I could get better sleep.

Wednesday, August 28

I woke up this morning and felt awful.  I was slow moving to get to the hospital.  Then the traffic was bad and it seemed to take forever to get to the hospital and park!  So, I missed rounds.  I felt so guilty.  But, I was told that she woke up at 6am (so unusual for her - she's such a late sleeper) and told her nurse that she wanted her hearing aids.  They found the container and handed it to her.  Harlie took it and put the battery in, closed the door and put it in herself!  She is so funny!  Then she took her BAHA, put the battery in, closed the door and lifted her hair up so they could click it on (she can't do that yet).  They tried, but didn't know how hard to push and were uncomfortable trying to do it.  So they told her I would do it when I got here.  I love that she was able to communicate with them.

Today we had more visitors.  Lynda brought her girls and they were hoping to paint Harlie's nails.  But she said no.  Then Sally and her kids came.  Her daughter Annabelle brought a Lots O Hugging bear (from Toy Story 3) for Harlie.  Oh, and Lynda brought her a tiara so she would give back Jessica's.

Annabelle and Harlie.

These are the worst pics!  I think it might be time to replace my cell phone...

Charlie, Samantha, Jessica, Harlie and Annabelle.

The kids and the moms.

We could never have done this in a curtained area!  I am so thankful they moved us to this room!  I hope, despite all the crap Harlie has to deal with, that she knows how much she is loved.  She was surrounded by lots of laughter today - and laughter is healing, right?

Later on in the day my niece and nephew, Maggie and Charlie, came by to visit.  But Harlie fell asleep while they were here and I didn't get their picture.  Darn it!

You might remember me mentioning that Harlie had a CT scan of her spine coming up.  Well, it was scheduled for Friday.  They worked it in for today, just to get it over with.  So we went down for that.  She looked scared again on the way there.  I told her it was a CT scan and it was the big donut and she would remember it when she saw it.  As soon as we walked into the room, her face lightened up.  It was as if she thought, "Oh, I got this."  We had the same tech help us with this scan as we did on Friday when we got here.  It's so funny to get to know so many people so fast when you're in the hospital.

I don't know how she can be so happy.  But I love it.

Oh, I forgot to mention the chest x-rays... After all the respiratory distress on Monday night, they got a chest x-ray.  It showed pulmonary edema.  I think this is good (versus having pneumonia) because it is treatable with Lasix (a diuretic to help you get rid of the extra fluids).  I've always felt that she was fluid sensitive, meaning that her heart and lungs have a hard time processing an increase in fluids.  And with all the IVs, food and water, plus the constant sedation, it's been too much.  She's been coughing almost non-stop.  So she's been asking to be suctioned non-stop.  This girl keeps me busy!

They also started trying to use a vest today to help loosen up her lungs and make it easier for her to clear her secretions.  I've asked about this device in the past.  If it helps her, I think her doctor would be agreeable to getting one for her at home.

I can't believe how agreeable she was to putting it on!

They have it set on a low setting now, so she can get used to it.  Never having seen it before, it looked pretty darn fast/hard to me!  I really can't believe how well she tolerated it.  They did it for 15 minutes, two times today.

Her coughing continued to get worse throughout the day.  So, they took another x-ray and saw no improvement from Monday night.  I told them that I had just weaned her off Lasix (which she had been on since we were in Boston in July) so maybe she needs a daily dose again.  They agreed and they started it tonight.  She's better already since that dose.

Just in case we were getting bored... When she got off the potty tonight, it was pretty obvious that she has blood in her stool.  Seriously?  You have GOT to be kidding me.

I really, really don't want this to happen here.  Back in February we had an issue with this same problem and it was a nightmare.  And I've seen the doc that we had back then in the hallways this week.  So I bet that means that he's on this week.  Which probably means that if we had to have a consult with GI, he would be the attending.  UGH!  Her nurse took some for culture and a group of residents (I assume) came in to discuss it with me.  I hate everything having to do with GI issues.  We decided not to do anything at this point.  She can't have anything else tonight anyway (because of the sedation in the morning).  And it's too late for an exam, etc.  We are just going to see if the problem continues.

As the day wore on, I felt worse and worse.  I was really hoping I could go home tonight.  Especially since our night nurse is the nurse we had yesterday.  So, she knows Harlie well.  But, Harlie is headed back to the OR in the morning and she is first case.  So they are going to take her early.  And there is no way I could get here that early.  So, I'm just going to sleep here.  It's been such a busy night.  She got a bath and got her hair washed for the first time in almost a week.  They did the vest after 10pm.  And she is finally going to sleep now.  

I have been trying to write this post for days.  I can't begin to tell you how busy our days are.  There are so many interruptions!  On at least four occasions I have started to reply to a message, and was never able to finish typing.  So, if you are waiting on a reply from me - I am so sorry!  Hopefully tomorrow I will be able to get some things done while she's in the OR.  

Okay, I must stop now.  I am super tired.  Thank you so much for all your messages of love and support.  It's probably one of the main reasons why I haven't lost my mind yet.  Although, if things don't turn around soon, it could still happen. 

Much love,

Christy xo 

Post-Op Day 3

She is definitely more swollen today.  But they say the third day is the worst.

And she's still holding on to a lot of fluid.  After two IV doses of Lasix, we haven't really made any true progress.

At 8am cardiology rounded.  Loved this doc and how kind and thorough he is.  When they put the IV in yesterday they got some blood for labs.  Her white blood count (WBC) is high, so they are going to start a broad spectrum antibiotic.  They also got some of her secretions last night to culture.

Her lungs sound coarse and crackly.  So it sounds like she's worse today than yesterday.  When she cries, she makes NO sound at all.  Which means she is swollen around her trach tube (usually there is a leak around, which allows her to make sound).

In order to get her home, she has to be fluid balanced - or at least heading that way - on oral (well, through her g-tube) Lasix versus IV Lasix.  He said if the IV Lasix works, and they send us home to find that the oral kind doesn't work, then we'll be in trouble.  So, she needs to get rid of lots of fluid, get switched to oral Lasix, keep the fluid off for a while, before we can be discharged.

Unfortunately, her second IV blew.  So, they have to start another one.  Plus, get more labs.  They want to see what her WBC is today in comparison to what it was yesterday.

I turned her screws this morning and afternoon.  Only one more time today.  They are getting harder to turn already and it is really hard to do it.  It grosses me out and I know it hurts her.  So, to cause more pain for her is awful.  Truly awful.  Especially since we have to turn the screws three times a day - which is six times per day since there are two sides!  Plus, we have to clean the pin sites whenever they need it.  We have to keep those sites clean to reduce the risk of infection.  If she thinks it hurts now, I don't even want to think about how much it would hurt if they got infected.

I think she is going to give herself a brain injury with all the thrashing she's doing.  She swings her arms until you hold them down, then kicks until you hold her legs down, then she starts throwing her head forward and backward and side to side.  It is so awful.

I've had to show some pictures of her to her nurses so they know what she really looks like.

The IV team just came in to start a new IV.  It took four of them to get it in.

Can you imagine how scary this is for her?  Four nurses in gowns and masks inflicting pain, and your mom sitting in the room, not stopping it.

In summary, this is what has happened today:

Had to start an IV.
Had to get labs, not utilizing the IV, so they had to poke her and take blood that way.
Had to get more labs, but from two different areas of her body.  So two more pokes.
Had to clean the pin sites.  Still need to do it one more time today.
Had to turn the screws, two times on each side.  One turn per side still to go tonight.
Got two x-rays.
Got an EKG.

If you only knew how hard she fights all of that stuff.  She is WIPED OUT.  This room is freezing and she's a sweaty mess.

I have to say that her nurse today was very apologetic to Harlie.  I could hear the compassion and sincerity in her voice as she told Harlie over and over again that she was sorry.  She said the night nurse was going to have to clean her pin sites - she just couldn't inflict any more pain on her.  I hear ya, sister!

Well, as you might be able to tell, I work on my blog post throughout the day.  So, things are constantly changing.

I just spoke to the doctor again (love him!) and he said her WBC went from 25 to 30, which is high.  They also did another test that tells them the cause is most likely bacterial versus viral.  And based on her most recent x-rays, they are suspecting that she has pneumonia.  They are having Infectious Disease (ID) consult to see if they can target the bacteria a little better so they can get the right antibiotics in her.

We have taken a few steps backward.  And there is definitely no more talk about going home.

Here are the meds she's on right now:

IV Gentamicin
IV Lasix
IV Clindamycin
Oxycodone
Advil
Ibuprofen
Aspirin
Enalapril
Miralax

We'll see what ID says tomorrow when they come to see her.

Tom should be finishing his 200 mile bike ride anytime now.  They started at 6am.  It is now 8pm.  I hate that he is doing something so difficult and I'm not there to support him.  He is always so supportive of me when I run races.

Well, I'm going to go now.  Thank you so much for all your incredible support.  All of your kind, heartfelt messages are really helping me get through this.  I knew this was going to be tough.  And it is.  And will continue to be for a while.  Please know how much I truly appreciate you taking the time to comment, text, email or call and say nice things to me.  I can't respond as much as I would like.  But, I am feeling the love.

Much love back,
Christy xoxo

Noon update

Harlie seems to be doing okay. She actually got a few hours of sleep this morning. But for most of the night something was being done to her. I slept some - maybe two to four hours with some interruptions. At one point I woke up and could tell there was a lot of activity in the room. I asked the nurse what was going on and she said that her blood pressure was trending low. And her blood gases weren't great. And because of those things they have not given her any pain meds since a dose of morphine right after surgery. They don't want them slowing down her system anymore.

The plan right now is to give her IV antibiotics for the infection. Infectious Diseases(ID) have been called and they are going to come and talk to me about their plan for ABs. She will most likely get a PICC line (just like she got last year - which is like an IV so we can give her those strong meds from home). That means weekly dressing changes which totally sucks for her on top of all the pain she's been through. But I know that things could have been way worse, so I am counting our blessings.

Unfortunately, she will have to go back into the OR on Thursday for another irrigation and debridement procedure and cast change. So I really don't see us leaving before next week. I have no idea how long they will want that vac dressing (suctions out the goo from the wound) to stay and we clearly can't leave with that.

I will have to talk about this more later - but that doc we saw in Richmond on Saturday (along with his attending physician) is getting a letter from me along with the photo of her wound. He was deceptive in the way he communicated his title to me (called himself Ortho Chief instead of Ortho Chief Resident) which is very different. And I just found out he did the same thing to the Resident in DC on Saturday over the phone. So when the resident here in DC was talking to him he thought he was talking to someone with many more years of experience, so he went with his decision. There are so many things wrong there that I cannot leave it alone.

All in all, I think we will be here till next week for sure. Her wound has to start healing from the inside out, and the vac dressing has to be out before we can go home. I will be happy if we are home in time for Murphy's birthday on the 11th. I cannot believe he will be 7 years old! I really hope he and Cooper are doing okay. It must be unsettling (even if they don't show it) to see everything's fine in the morning only to get home and find Harlie and I gone for the next week or so. Sometimes I can't believe this is our life. It is so weird to feel so incredibly lucky and blessed but cursed at the same time.

Thank you for all your support. You might not know what to say - but just knowing we aren't forgotten makes a big difference in our spirits - my spirits especially.

Thanks,
Christy

infectious Disease Appointment

We had another appointment with her Infectious Disease doc in Norfolk on Tuesday. I think it has been 3 weeks since our last visit. She has been on an oral version of Levaquin since then, and has been doing well. No diaper rash (thank God!) and no increased vomiting, hives, etc. So, that's wonderful. I have been very happy with how well this antibiotic is going so far.

She started receiving antibiotics on February 11th. It has now been over two months of treatment. The doc said that the normal treatment time for this kind of bone infection (because they are so much harder to fight) is between three to six months. So, we are not even halfway yet. But, as long as the Levaquin works okay, I'm happy.

Since she no longer has the PICC line, they had to draw blood. The only negative was that we had to go to the lab. It was very crowded, and not comfortable at all. There were two small rooms for drawing blood, which were in the middle of the waiting room. So, you could hear everything - including crying and screaming while they were poking kid after kid. There are definitely moments that I find it helpful that Harlie can't hear very well. But Cooper and Harlie played anyway, ignoring the screaming, and were very good.

When it was Harlie's turn, she was a champ. One stick, and just 45 seconds later, we were walking out the door. I'm so proud of my little girl sometimes I just don't know what to do.

We go back in about 5 weeks, I think.

More later!
~Christy

Infectious Disease Appointment

Oh, so much to tell you about. I am SO behind in blogging.

So, today was our weekly Infectious Disease (ID) appointment in Norfolk at CHKD. It was at 10:30am and my plan was to meet my friend Melissa at the mall at noon. The last time we had this appointment, we were in and out, with little fuss (lots of torture to Harlie) but in general the appointment went smoothly. So, I thought a noon meeting was realistic based on prior experience.

Last Tuesday, we had an ID appointment at 11am and then another appointment with her plastic surgeon at 4pm. Since we had some time to kill, we took the kids (Harlie and Cooper) to the mall. The mall there has a great play area for kids. It is super big and has lots of fun things for them to crawl all around, over, through, etc. Since Harlie has to have her dressing changed for her PICC line (and it is torture for her) I thought it would be good if we could reward her with going to this play area after each appointment. She loved it and had a great time. And I was hoping that she would connect the two and see/feel some sort of reward.

So, we went to Norfolk today, with the same plan in mind. Meet my friend Melissa, have lunch, let the kids play, then get on the road by 3pm. Easy.

Not.

I woke up this morning to see a note from the night nurse saying that she had to give her Benadryl for an itchy rash that developed during the night. Got her out of bed and her entire back/sides were covered in a raised, prickly, hot, itchy, red rash. Great. So far, we have been able to manage her chronic hives with daily doses of Zyrtec and Zantac and Benadryl if needed. She gets her Zyrtec in the am, so I thought that dose would take care of it and it would be gone before the doc could even see it.

Not.

Which is a good thing. Really. The ID doc did not like the look of her rash, hives, whatever it is/was. And her diaper rash is beyond horrible. She said it wasn't the worst she has seen, but it is close. I just hope she won't require skin grafts in the future.

So, she said she thought it would be best to change her IV meds. She was on Clindamyacin and Zosyn. Unfortunately, the antibiotic that we have to go to (Levaquin) has some side effects that make the patients achy because it is hard on the tendons and joints (some have a hard time bearing weight due to the pain). So, we'll just have to see how she handles it. The good thing is that instead of her getting two IV antibiotics three times a day, she will get just one med, two times a day. The dose is larger and takes one hour to infuse. So, overall, not bad.

I asked the doc about her blood work. They take blood for labs at every appointment. She said that last week's labs looked good. Nothing remarkable. And she said that she would call me tomorrow to give me the results of today's lab work. We were curious to see if the levels that indicate a drug reaction were higher (which would explain the hives).

So, when you change IV meds, home health will not let a patient receive a new IV medication at home. So, that meant that we had to stay there to receive a dose of the new antibiotic, wait to make sure there were no reactions, and then we could leave.

While all this was being discussed and worked out, the vascular access team (VAT) came down to change Harlie's PICC line dressing. You might remember this post about the dressing change we did at home. So, when we went last Tuesday, I had them change her dressing again, so we could get on the schedule to have her dressings changed there each Tuesday by the VAT. And the VAT nurse that did the dressing change completely agreed that it was not a good idea to do them at home. She said Harlie was the biggest fighter ever. Everyone was getting a work out trying to hold her down and hold her arm in the right way. And she especially did not think that Tom or I should have to be the ones to hold her down.

So, this time they asked me to take Cooper and just leave the room entirely. It was mostly because they have to be masked during the dressing change - I have a crummy cold and Cooper would obviously not wear a mask on his face. So, out we went.

Which was really weird for me. I HATE to be the one to hold her down. BUT, I am there with her, and while she's in pain, I am in pain right with her. And somehow that makes me feel better. Plus, I feel like I am still there to protect her in some way (not that they would do anything unethical if I wasn't there) but being there I know what's going on and what's happening and somehow that makes me feel better, too. To leave her entirely makes me feel like I've abandoned her and I feel crappy on top of still being in pain.

Most of the hospital is a vault and there is no cell phone signal. Since we left the room in such a hurry, I left all my stuff in the room. So, I couldn't go out to call Melissa to let her know that our plans had changed. I couldn't even use an office phone because I don't know her cell number by heart and it is a long distance cell number. And by this time, it was noon and I knew she was already at the mall waiting for us. Ugh. Do you remember this post about why I don't like to make plans?!?!? Ugh!

We finally got called back into the room, the dressing was changed and Harlie looked wiped out from all the struggling she did. After getting Harlie dressed and packed up, we were told to go to the 7th floor so she could receive her first dose of the new meds.

We went and got on the elevator, but the elevator only went to the 5th floor. So, we had to go to the 1st floor, change elevators, and then go up to the 7th floor. So, while on the 1st floor (where there's a cell phone signal) I called Melissa and told her we couldn't come. Ugh. I felt terrible that she came all that way, and we couldn't come. But, she said we can try again next Tuesday.

So, we changed elevators, and went to the 7th floor. Checked in and they put us in a room and said they'd be right with us. It was a little after noon, I think. Then the nurse came to tell me that I had to check her in at admissions. And of course, admissions is on the 1st floor. So, back down I go to check her in. Then back up to the 7th floor with the paperwork they needed to get the meds started.

At this point, Brandy and I decided that we would still take Harlie and Cooper to the play area at the mall when we were done. I had already told Harlie we were going (not sure if she understood or not) and I really want to reward her after those dressing changes.

Since Cooper had not eaten yet, I knew he couldn't wait till we got to the mall, so I had to go downstairs to get him something to eat while Harlie was getting her meds. So, I took Cooper in his stroller and went back down to the 1st floor. Got his food, and came back up to the 7th floor. When we got back to Harlie's room, he was almost asleep! So, I managed to get a couple of bites in him and he woke back up. I was thinking that after he ate a little, he would go back to sleep. Nope. But, he was really good (despite being VERY curious in a dirty hospital) so it was fine.

After waiting a while, the ID doc showed up. She said that she already got back the results from her blood work this morning. And it is a good thing we switched her IV meds already. Because if we hadn't and we left to go back home, she would have made us turn around and come back.

Her labs showed some numbers that were not good.

An absolute eosinophil count is a blood test that measures the number of white blood cells called eosinophils. Eosinophils become active when you have certain allergic diseases, infections, and other medical conditions. Her eosinophils went from 1% last week to 10% today. The normal range is 1-4%. So, clearly her body was having a reaction to the meds.

And her white blood count was too low. The normal range is between 5-15, and hers was 3 today.

There were more numbers that were off, but I can't remember what they were, and they really just mean more of the same. She couldn't stay on the meds, they were starting to do more harm than good. So, I'm thankful we found all this out today and not tomorrow.

So, after the ID doc told us all this, we asked her if she could check on the status of her antibiotic and when they were going to start it. She came back and told us that they never send trached patients to this area of the hospital (but she didn't know this), so they were trying to figure out what to do. WHAT? Why does it matter that she has a trach? She's just getting an IV med, and that's it. Her trach has nothing to do with this.

So, more time went by. And Brandy and I took turns walking back down to the 1st floor to get something to eat from the cafeteria. Which neither of us did, because that has to be one of the crummiest cafeterias ever.

Tick, tock. More time went by.

I remembered that we had left some of her breathing treatment meds at the hospital when she was inpatient in mid-February. CHKD doesn't carry one of her meds, so I have to bring it from home, have the pharmacy check it and then the respiratory therapists bring the meds in for her treatments. Well, we left, and I never got the rest of her meds. So, I called a few days afterward and they said they would hold it for me. I forgot last week to get them, so since we were doing a lot of waiting, I went to get them.

We were inpatient on the 8th floor. So, I went up one floor to find them. But, I couldn't get to the area of the hospital I needed to by using those elevators. So, I had to go back down to the 1st floor, take a 3rd set of elevators, go up to the 8th floor and see the nurses. They found a note that said the meds were being held in Security. Guess where Security is located.... go on, guess.

The 1st floor.

So, I went and got the meds, and then went back to the other elevators and back up to the 7th floor.

At some point (it must have been around 2pm) they came in with the IV meds and said it takes an hour to infuse and then we have to wait for another 30 minutes after that to watch for any reactions and then we could go.

By 2:30 I couldn't take it anymore and was sure I would die from hunger if I didn't eat soon. So, I put a - by now - cranky Cooper (thanks to me waking him up to eat and then missing his nap entirely) in his stroller and went back to the 1st floor in search of something edible.

After a long search, the only thing I found was cereal. Apple Jacks and Fruit Loops. I thought I could probably use the sugar. So, back to the 7th floor we went, and by the time we got there, Cooper was snoring. Ahhh. Maybe now I could eat my delicious, just what I wanted, sugary cereal, while sitting down, in peace.

But then Brandy told me that her meds were done already and we would be able to leave at 3:30! YAY! So, i put the cereal away and thought I could tough it out for a little longer for something more substantial than cereal. Which, looking back, my hunger was clearly affecting my ability to think correctly, because I should have been able to figure out that we would get to leave at 3:30pm. Whatever.

Finally, at 3:55pm, we were in the car and on our way home. Without going to the mall. Bummer. So much for that connection of torture then reward. Oh well. There's always next week. And the week after that. And the week after that.

Whew! What a long, long day. I'm beat and very thankful that we have our night nurse tonight to give Harlie her 3am dose of meds. We'll push it back a little each day until we get to a 6a, 6p schedule.

Well, that's it for now. Thanks!
~Christy