On ABs

Unfortunately, Harlie has gotten worse.  I'm not too, too worried yet, but I'm keeping my eyes on her for sure!

Last night (Sunday night) we turned on the oxygen concentrator again.  I was up a few times, but it wasn't really that bad.

Except I had to get up around 3am to let the dog out.  While that happens very rarely, it was the second time in just a few days.  And when he went out, it didn't seem like he really had to go, it just didn't seem urgent.  And when he came back into the house, he immediately jumped in our bed.  So far, he still sleeps in his crate.  I wanted to make sure he was fully house trained before I let him out at night.  I let him hang out for a little bit, but then put him back in his own bed.  So, last night he did it again, and promptly headed for our bed.  Hmmmm.  I'm thinking he's a pretty smart dog.  I think he goes outside just so he can get in our bed.  Tom is pretty against him sleeping in our bed.  He claims that he already gets a very small portion of the bed.  If Rooney got in there, he would get even less.  Whatever.  That is simply not true.  I am not that big.  I couldn't possibly take up most of the bed.

Anyway, back to Harlie... so, I got her up and dressed and brought her downstairs.  I guess she'd been off the oxygen for about 10 minutes.  I was getting her settled on the couch when Terri came in.  We checked her sats and they were 72 to 73!!!  Holy cow!  That's even low for her (her baseline is high 80s/low 90s.)  So, back on oxygen she went.  She stayed on the couch for the whole day.  I called her pediatrician and got an appointment for the afternoon.

Throughout the day Terri would take away the oxygen and check her sats.  Every single time they plummeted immediately.  Ugh.

So, it was time to take her to her appointment and I went and got the portable oxygen tank.  Boy am I out of practice!!  I unlocked the tank and saw that it was almost full.  I gave it to Terri to hook up to Harlie.  But during all this, Harlie threw up all over her clothes.  Wow - it was just like old times!!!  I swear that always happened when we were in a hurry to get out of the house!  So, we had to change all of her clothes.  I was going to be late for sure.

So, we get her in the car.  I couldn't help but think back to when she was a baby and remember how hard it was.  And, for the record, she was a baby for like five years.  ;-)

I check in and Harlie looks just terrible.  I had to carry her in - along with my bag, the suction machine and the oxygen tank.  Our doctor's nurse is named Terri, as well.  And Terri said it has been a long time since I've seen her look so sick.  I'm thankful that it's been a while.

So, we get in the room and I'm telling her what's going on and why we're there, etc.  I mention that we need to give her three liters of oxygen at home to keep her numbers up.  So, I say, "Oh, I wonder what she's on right now.." and turn to check.  Oh no.  The regulator is OFF.  Oops.

I guess Terri thought I turned it on, and I thought she turned it on.  Boy we are out of practice!  So, I turned it on.  And she felt better.  Embarrassing!  Poor Harlie.

So, I guess that reminded Terri (the doc's nurse) of when she first met me.  I often wonder what people (who don't know me) think when see me with Harlie (or without sometimes!).  Terri said that she had just started there (I remember that) and Cooper was there for his two month well check.  But he was THREE months old.  She said that his hair stood straight up (totally true).  And that after meeting me (I just had Cooper, Harlie was not with us) she thought, "That mom does not look like the kind of mom that would be a month behind on infant checkups.  He's only three months old and she's already a month behind?  That poor neglected baby!"

She said it wasn't long after that that she met Harlie and then she thought, "Oh, he's good."

I bet I did look a little spacey.  An overly worried Mama, I am NOT.  Too funny!

Anyway, her doc had a listen to her lungs.  And while he said they sound clear, she is definitely working hard to breathe.  Sadly, it's really hard to notice that in this crazy house with the kids home and the TV on.  But, when it was quiet in his office, you could really see how labored her breathing was (and that was after I turned on the oxygen).  He put her on antibiotics.  So, we'll see what happens.

I haven't rescheduled her sleep study yet.  I'm going to give it a few more days.  You never know... she could bounce right back!

More soon!
Thanks!
~Christy

Antibiotics... and then some.

I'm feeling overwhelmed tonight.  There are so many balls in the air concerning Harlie right now.  She has been a full-time job requiring over-time lately!  And I can totally see that other important things in life are suffering because of it.  I am really hoping I can get some things put to bed soon, so all can balance out again (as if!).

First of all, we can't seem to get her healthy and off antibiotics!

During the last two weeks of August, she started to have some issues.  I can't even remember now (it was so long ago, after all!) but her pediatrician put her on Amoxicillin for 10 days.   Just a few days later, all her symptoms reappeared.  So, back on it she went for 14 days.

Then a week or so after that course was done, she started to get sick again.  We were starting to wonder if she had a sinus infection.  But, she saw her local ENT that week and she said she appeared to be fine.  Although that was the day that she pulled that blood clot out of her ear canal.

A week later, she had an ear infection.  And then went on her third round of antibiotics.  But this time, he put her on Augmentin.

The day after her last dose of Augmentin, she saw the ENT in Norfolk, who said she had fluid in her ear and to watch it closely.

Two days later, she had a fever and was looking like crap.  Again.  So, back to the doc, and she had another ear infection - this time she had a blister in there.  Another round of antibiotics, this time Omnicef.

Two days after that, she started showing signs of a UTI (urinary tract infection).  Back to the doc.  The dip was clean (which was very surprising) but they sent it away for culture just to make sure.  And he put her on another antibiotic (Bactrim) for that since Omnicef doesn't cover UTIs.   And then I went to Whole Foods and got her a probiotic just in case all the antibiotics do damage in other areas.

Whew!

The good news is that she had a fever (okay, several over a few days).  She hasn't had a fever in years (even when her jaw or spine was infected post op).  And that was making me quite nervous.  So, I'm relieved that things seem to be working the way they are supposed to in that department.

Hopefully, this is it for her and antibiotics.  And hopefully she can get back to school again.  She hasn't gone since last Thursday.

She had an appointment with her pulmonologist today.  We haven't seen him in over a year.  She seems to be breathing more rapidly and more shallow lately.  And I had some other things I wanted to discuss with them.  Nutritionally she's doing well.  He said that her weight for height number is great - it's actually higher than they would expect given her history (she's in the 25th percentile).  Her height is still low - she's in the 3rd percentile for stature.  Not surprising, really, considering she's two inches taller than Cooper.  It won't be long before he's bigger than she is.  Won't that be confusing!

One of my concerns was the sand table in Harlie's class.  The last time I was there I noticed that there is a huge fine sand dust that floats around the room when kids are playing in the sand.  It totally made me a nervous wreck.  She has no filter - thus, no protection from the sand getting into her lungs.  I asked him if I was crazy (hoping I was considering she LOVES the sand table) but he said no.  The sand dust has to go.  She simply cannot be around it.  It would be different if she was only around it once a month or something.  But, five days a week?  No way.

I just hope that the school switches the sand out for another alternative.  Anyone have any suggestions?  I know that dried beans are a substitute.  But, I'm not sure about bugs.  I need to go and look for a small smooth pebble-like gravel material to see if that might be an option.  If you know of any other options - please let me know!

I'm also working on getting a second opinion on her jaw.  But that is way too long of a story to tell you about now.

Oh, and our pharmacy is having trouble getting two of her monthly meds.  So, I guess I need to work on that, too.

Well, I'm falling asleep while writing this.  I don't even want to proof it.  So, forgive any errors please!
Thanks!
Christy

Back to the doctor

Real quick one...

Harlie's incision is looking red and angry.  Not the whole incision - just at the top where the infection was.  We've been watching it closely and hoping that it would get better.  I took a picture of it on the 13th and then again on the 17th and there is a noticeable difference.

I, of course, was thinking, "eh, it isn't that bad."  You can bet I wanted to believe that, too.  She's been on several antibiotics since May 2nd, 16 days now (most of that time getting IV antibiotics).  How can it not be getting better?  And the antibiotics are awful on her.  I couldn't wait to be done with them!  Which, was yesterday.  So now she's officially off the antibiotics.  Which, if the incision is not looking better, is a bad thing.

So, I couldn't ignore it any longer.  Plus my nurse told me I had to get my head out of the sand (I'm paraphrasing here, she was much nicer about it) and send the surgeon pictures.  So, I did.  I sent her several pictures and she responded by asking if we could come see her today (instead of next week).  Ugh.

Here are the pictures (because I know you want to see, and if you don't, I would like them in my blog for record keeping purposes, so look away if you don't like stitches)...

May 13th, right after removing the dressing. 

May 14th

May 17th

May 17th

See, I don't think it looks that bad.  But, subconsciously I don't want it to be that bad.  And the bottom line is that it should be looking better - not worse.  And it definitely does not look better.  And she's no longer on the antibiotics, so how long till it looks way worse?  Plus, it had some white stuff coming out of it, which may be totally normal, but I don't know.  So, we just can't risk it.  I do NOT want to land back in the hospital!!!  

Plus, I want her to see how she's not putting any weight on her right foot/leg.  I'm worried about what might have happened when she lost her balance the other day.  So, getting x-rays today will be good.

Okay, must run.  Lots to do to get ready to go.

More later!
~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

Bye-Bye PICC line!

Harlie's PICC line is OUT! And our weekly trips to Norfolk are done. We will go again in three weeks. They switched her to the oral antibiotic and I think she will be on that for two months. Although when I picked up her prescription today, it was one bottle that will last for 30 days. And it said five refills are allowed. Hmmm. Not a good sign. I guess we will just have to see how her blood work looks as time goes by.

I told Harlie what we were doing today (getting her PICC line out) but I don't know what she understands. She started crying as we were walking down the hallway approaching the clinic. One of those defeated cries. It breaks my heart. And she started crying again when they called her name to go back. But she walked right up on that scale and stood still to be weighed. Then we told her she needed to get her temperature taken. So, with tears and hunched shoulders she walked over and got up on the chair and held her arm out for the temp probe. She is so good.

Here's her waiting in the exam room for the VAT team to come and pull the line out.





She loves to take pictures with my camera. She took this one of me and Brandy...



And me with a very accident-prone Cooper (he crashed into several things in the exam room and then got a bloody, and now - fat lip, at the play area later.



And the fun begins...





This is her thinking it was over.



But it wasn't.





Now it is over. And the PICC line is out and gone. But she was so protective of her arm still that I couldn't really get a photo. She wanted her sweater back on and wouldn't let me take it off for the rest of the day.



Then we went and met my friend Melissa and her daughter Isabella at the mall. She had a great time. And Cooper got knocked down by a bigger kid and did a face plant right into the corner of one of those things they crawl all over. It was not pretty. But his lip didn't bleed for too long and he recovered pretty quickly and went right back to playing.

I have more to update, but will have to save it for later.

Thanks!
~Christy

Lots of Pictures

Ahhh, what a beautiful day! The kids had a half-day at school today. And since Harlie is in the afternoon preschool class, she didn't have school at all. So, after we walked down to the school to get Murphy, we went in the backyard to play.





Murphy took this photo of her...





Notice the clubbing of her fingers. The clubbing is due to prolonged oxygen deprivation. It will never reverse. But I think if she has her next heart surgery, and her oxygen saturation levels increase, then maybe it won't get any worse. Her fingers didn't look like this until June 2009 (when she had her 3rd heart surgery). Then it seemed to happen overnight.



But she doesn't care (yet). She was all smiles tonight.







This is her reading and "doing" the Itsy Bitsy Spider - one of her favorites.



Also, notice her PICC line. She loves the mesh sleeve over the dressing. I think it makes her feel secure that we're not going to mess with it. And I'm so happy that this is our LAST week and that on Tuesday, they are pulling it OUT!!! WooHoo! Then she's going on an oral version of the antibiotic for at least TWO MORE MONTHS! She's already been on them for 6 weeks. That's a long time on antibiotics.

Here's a picture of the antibiotic, aka medicine ball. It is filled with the medicine at the specialized pharmacy and it is really hard. When it is unclamped and plugged in to her PICC line, it infuses the meds over one hour.



Here is the medicine ball empty.



I'm fascinated. It is so cool. And so easy to work with. But, I'm not going to miss it. And I can't wait until Tuesday! The PICC line can't get wet, so baths have been a little challenging. I am so looking forward to not having to worry about it anymore.

Well, that's it for tonight.

Thanks!
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