Tuesday, March 30, 2010

Weekend Update

To recap this past weekend...

Saturday was the Ukrop's 10k (6.2 miles). It was my first time to be in a seeded wave (you had to have proof - a past running time - to show that you could run that particular pace) which I thought was pretty cool. My wave was the one that would complete the race in 53-54 minutes. My personal goal was to complete it in 52-54 minutes.

Unfortunately, it turned out to be one of my worst runs - ever. Before I reached the first mile marker I knew I would not make my goal. I ended up finishing it in 56:00 minutes. I was pretty darn disappointed. Not necessarily in myself - I know I can do better than that - and have in training (like just the weekend before). And every runner has bad runs. I was just disappointed that my worst run had to be in a race. And I was feeling pretty crummy about it for a while. Until I realized that I have had much bigger disappointments - about things that are WAY more important than one lousy run. That's nothing on the scale of life. Especially my life! And on that same token (thanks Mel for helping me put it in perspective) I have had WAY bigger achievements. And just getting out there running when I can (which is not consistent unfortunately) is an achievement in itself.

Oh, and I have to thank my friend Alisha. After I finished my run, we found my brother, Bruce, and his son, Charlie, and went to cheer on my sister-in-law, Nancy and their girls, Maggie and Kelly. As we were standing behind the gates near the finish line scanning the runners for them, I saw Alisha. I yelled her name cheering for her and when she saw me she - stopped running, came over to where I was standing and jumped to lean over the gate to give me a kiss - then went back to finish her run!

Now that's the fun spirit you need when running. It's so easy to get caught up in trying to beat your best time. But sometimes it's good to remember to just have fun. She didn't care about her time. And she was laughing and having a great time. And that was exactly what I needed at that time. Funny how that happens. So, thanks Alisha!

And Tom ran the Kids Mile with Murphy. It was his first time doing it. Tom did a great job of getting him excited and making it something fun. Here they are right before the start.

And this is us after my finish.

After the race we had my parents and my brother's family over for lunch. I forgot to mention that my brother thinks he's funny. One of the first things he said to me when we saw each other at the race was something like - why don't you just tie Harlie up to the bumper next time? And back at my house, my Mom was pushing Harlie on the swing and Bruce yelled out, Hey Mom, just tie a rope to the swing and stand back here. He also told me, you shouldn't have skipped science class or something like that. Funny, huh? Yeah, I don't think I'll be living that one down for a while. Not one of my shining moments...

Feeding Update

Then for Harlie's "dinner" (still on Saturday) I thought I would try to get her to drink some. Prior to this moment, her sippy cup drinking had been spotty at best. All conditions have to be "right" in order to have a good feeding session. So, I put 4 ounces in the cup (5 ounces is a full feeding - but she's never come close to drinking all of that). Well, it was as if she knew I needed to be happy. She FINISHED all 4 ounces!!!! It was a wonderful session. She didn't complain or put up a fuss at all. It went beautifully!!! I wanted to put another ounce in there so I wouldn't have to hook up her tube feeding - but once we said "all done" there was no going back. So, I decided to wait a while and I would try again later. Well, about an hour later she drank the 5th ounce!!! So no tube feeding for that meal!!! WOOHOO!!!

On Sunday, I couldn't wait to try again. So, first thing that morning when Harlie got up and downstairs - we headed for the high chair. And holy moly - she drank the entire 5 ounces!!! Another tube feeding not necessary!!! Of course she threw up an ounce - but, hey, that's not so bad. Lunch was the same - all cooperation - no tube feeding! But dinner didn't go so great so I had to tube feed that one. Still - a great day!

And Monday and Tuesday went great with her drinking two out of three meals each day. All in all - she is doing FABULOUS with drinking from a sippy cup!

On Monday, Brandy was off, so I got to take Harlie to preschool. That was a fun experience. But I will have to save that one for tomorrow. It has gotten late!


Monday, March 29, 2010

Injury Update

Sorry I haven't updated this weekend. It was a wonderfully busy one, so I couldn't get on the computer. And I have a busy day ahead as well, so I'll have to update on all that stuff later.

But, just in case you're curious, here's what she looked like yesterday (day 3):

And yes, that's milk (well, Pediasure) in her mouth! She drank three full feedings this weekend!!!! And that means that she was able to orally get in her entire feeding (5 ounces, which is small, but a feeding nonetheless) instead of using her g-tube. WooHoo!

And just to prove that she is happy and doesn't notice her boo-boo - here she is last night playing in Murphy's room.

I just bought that dress for her and I think it is adorable! It looks so much cuter without a long sleeved shirt underneath (it's a tank dress), but it was cold and she wanted to wear it, so there you go. Oh, and yes, that is a sheet over Murphy's bed. Tom put it over his bed so it could be a tent. Of course Murphy loves it. But, I do not. It makes his room appear more messy. But, I'm not winning that one (so far).

Thanks for all your wonderful comments of understanding and support in my last post! You're the best! Okay, more later!

Thursday, March 25, 2010

Bad Mommy Moment

So a friend of mine from the down the street walked by on her way to take her boys to the playground. She made the very unfortunate decision to ask us if we wanted to come along.

The three big boys were riding their bikes. So Harlie wanted to ride her tricycle. There is NO way she would make it to the playground on her tricycle. So, I got the bright idea to get a rope and tie it to the front of her bike so I could pull her when she got too tired.

We only made it a few houses down the street when this happened...

We were turning a corner, she steered straight while I pulled to go around the corner. The bike went over and Harlie's head it the pavement.

Bow in her hair?





Aw crap.

She doesn't have one. And I don't know why I didn't even think about it. I guess I was so excited about the prospect of her being able to ride her tricycle that I... well, I lost my head.

And to be honest, I remember reading on a Goldenhar support group that a lot of the kids had a really hard time with helmets because they just didn't have enough of a chin for the strap. They just wouldn't stay on. And I guess somewhere in my mind, I wrote off her ability to wear a helmet. She does have a chin now. Not a symmetrical one, mind you. But, still a chin. Maybe a part of me was afraid that she would still have the same problem.

But, I guess we'll find out for sure this weekend!

Back to the accident... I knew it was going to be ugly. I picked her up and told my friend to look for me, because I couldn't. Yes, there's a gash, she said. I took a quick peek, saw blood, and ran her home.

That's probably when my friend started to regret the decision to invite us along.

She was left with five kids (three of them on bikes and already a block ahead). But, luckily, a middle schooler that lives on our street was helping us out keeping up with the boys on the bikes. Thank goodness!!! Thank you so much G!!!!

So, I took Harlie home, got her cleaned up, called my friend/nurse, Jennifer and asked her what to do. Once I cleaned it, I realized that it wasn't nearly as bad as my imagination made me believe. So, I put her in the car, went to the drugstore and bought some of those butterfly closers. Then I took her home, gave her a bath, and Jennifer came over to put it on for me.

Harlie put up a good fight, but we prevailed. That photo will come tomorrow.

Then Harlie and I went to pick up the boys from my friend's house. She fed them dinner while I was getting Harlie straight. And then saved some for me to take home. Seriously, how nice is that?

I love my neighborhood.

Thanks, B!!!!!

We'll see how her goose egg looks tomorrow. I'll certainly let you know!


Tuesday, March 23, 2010

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.


Thursday, March 18, 2010

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.


Monday, March 15, 2010

Insurance and Hearing Test

I hardly talk about insurance, as I try not to think about it myself. Although that is difficult when I receive several Explanation of Benefits (EOBs) every single day. Literally, I receive anywhere from one to five EOBs each day. I just open them and put them in a notebook. Until that book becomes too heavy, then I archive the oldest ones, and start again. It's really quite ridiculous.

Today I received something a little a different. The letter says:

You are receiving this letter because the claim for the medical services listed above (claim number) was submitted to (Insurance Company) with a diagnosis for a type of treatment frequently found to be related to an accident or other trauma.

So, I think to myself, "What in the world are they referring to?" I look and it says "Children's Hospital".

Hmm, I'm sorry, but you're going to have to be more specific.

I can only chuckle at the fact that when I get a letter like that, that I have NO idea what they are referring to. Yes, there have been that many procedures, surgeries, and appointments. And it doesn't help that we frequent THREE different children's hospitals.

So, yes, you are going to have to be more specific.

After closer examination it says it's from Virginia Subrogation Services. I looked up "subrogation" on the internet and got this definition.

Then I said, "Huh?"

I searched again and found this explanation, which makes a lot more sense:

Suppose you’re in a car accident and it is clearly not your fault. Your car is wrecked and your neck and back have been injured. You are covered for both the damage to your car and your personal injuries, and so you call your insurance company and they pay all of your expenses relating to the accident. Later, your insurance company, realizing that the other party at fault also has insurance that will cover the damages, seeks out reimbursement from that insurance company since its insured was actually at fault for the accident. This is called subrogation.


Guess I'll be calling them soon. You know how I am about making commitments. Besides, it says I have 25 days to respond!

Ahhh, life with a medically fragile child is never dull.

On another subject, Harlie had another appointment for her hearing aid today. It was her first one since the beginning of February.

She was tested in a sound booth. She sat in my lap and played with some toys on a table in front of us. Ann would speak to Harlie and the sound came from the speaker on Harlie's right side (the side that her hearing aid is in). She would start at a low volume and would get progressively louder until Harlie looked in the speaker's direction.

Even though I perfectly know that she is hearing impaired, it STILL felt weird to hear things that she clearly, could not. Ann spoke to her, asked her questions and made funny noises all at different volumes. Then she played a static kind of sound or a shhhh kind of sound.

Ann said that she did really well. Although Harlie had enough after several minutes and signed "all done" and got down from my lap and that was that. There was no chance of getting anymore from her.

The results show that her hearing is definitely improved with her hearing aid. Which is pretty obvious in our day-to-day life (yay!). Ann also said that Harlie seemed very different than she has ever seen her (signing more and making more sounds). And we all couldn't agree more. Harlie is a completely different little girl than she has been since her jaw surgery in mid-December. Ever since mid-February when she got those wires out (and treatment for the bone infection began) she is so much happier and more cooperative. She must have been so uncomfortable for those months she was wired and infected. If only she could tell me when she's hurting!!!

We will go back in three weeks. We might have to take another mold of her ear. While she wears her aid all her waking hours now, it falls out a lot. Ann said that she has a VERY tiny ear canal. Like the size of an infant's ear canal. Still! And I've heard this from her ENT, as well. It really doesn't seem to have grown much, if at all, since her birth. And it's information like this that makes me close my eyes, shake my head and wonder when this is going to bite her in the butt. Because I know it will. It will have some adverse affect on her. Her jaw didn't grow right and is too small. She's had two jaw surgeries, and her jaw is still too small. We need her bone to grow. GROW! And the problem areas in her jaw and her ear canal are right next to each other. That area just doesn't want to grow!

Well, tomorrow we are headed back to Norfolk for her weekly appointment with Infectious Diseases. I'm anxious to see if she handles it any better this week. I'll certainly let you know!


Friday, March 12, 2010

Going to school

Do you think she's a little excited to go to school?

She was so excited that she walked to the end of the driveway to wait for the bus. All on her own!

Then she did this when she saw the bus coming down the street..

I am so in love with that girl.


Thursday, March 11, 2010

Sippy Cup is a hit!

Just in case you're wondering how the sippy cup thing went over at dinner...

It went GREAT!

We only put two ounces in (not sure why) and she drank it all! I showed her on the communication device how to say "drink milk" and she would make it say "drink milk" and then she would take a sip, put it down, then say "drink milk" and then take a sip, put it down, etc.

You should have seen how proud she was of herself! It was so heartwarming. I can't imagine how it must feel to be her. She clearly is starting to realize the things that others do, that she doesn't. And I think she wants to, too. Although Tom did offer her a little taste of ice cream and she said NO for sure to that. Oh well. Baby steps. Or, as my friend Janis says, Inchstones! How's that for you? A three and a half year old that drank from a sippy cup for the FIRST TIME EVER!! Talk about patience!!!! I really hope there's something big waiting for us when we die.

I see big things with this sippy cup.

Oh, I forgot to tell you that she can "read" the Brown Bear book on her communication device. She presses all these buttons... I see brown bear looking at me, and then does that for each animal. Then after she's done, she presses the all done button. I will have to video it. It is so cute!

And - a Cooper first... Cooper NEVER eats vegetables. If it is green, he will NOT put it in his mouth - period! So, I went to Whole Foods to get Harlie some probiotics and I went to the frozen vegetable section and saw soy beans. Already shelled, steam in bag. Hmmmm. Murphy likes them. Perhaps, just perhaps, Cooper will try them.

YES! Cooper ate something GREEN!!! Woohoo! And liked them! I thought I was on cloud nine last night at dinner. Seriously, it was crazy good!!! It was such a wonderful dining experience with ALL of my kids drinking by mouth for the first time EVER!!!

Then, after dinner we went outside. I am totally loving the warmer weather. I got out Harlie's tricycle. Last year we had to put straps on the pedals to help her keep her feet on them - she was still a little short for it. Well, she got on it and pedaled like she'd been doing it forever. She could even stop, and then propel herself forward again by pushing the pedals - with no help! WOW! She still lacks the strength to go up an incline - but that's probably right around the corner.

Well, another post full of brags. I could get used to this!


Sippy Cup!

I am SO excited, that I cannot wait until later to blog. I just have to share this right now!

This morning in Feeding Therapy, Allison thought that Harlie looked really interested in self-feeding. So, she went and got a sippy cup.


She took the valve out, so it would be free-flowing. And Harlie literally took the sippy cup out of Allison's hands and kept on drinking! Some dripped out of her mouth - but she did GREAT! Now, just to clarify, she only takes one sip at a time. But, eventually she will learn to swallow and keep drinking, taking several drinks in a row. But, for now, one drink at a time is WONDERFUL!!!

Lately, she is all about feeding Cooper and getting him his sippy cup out of the refrigerator. So, maybe she wants to do the same for herself!

When I dropped Harlie and Brandy off at school, she took the sippy cup with her so she could drink during lunch. I am so anxious to see how she does. I wonder if she'll feel more like the other kids if she drinks out of the same kind of cup!

And I can't wait until dinner! I'm going to make a big deal out of letting her get her own sippy cup out of the refrigerator with Cooper's.

I honestly had never even thought of her being able to use a sippy cup. It just wasn't even in my goals yet. I am so wonderfully surprised that we could be here already!!! My heart just swells thinking about her drinking from a sippy cup!!!


Here's what we've been using for her feedings. It allows us to control how much goes into her mouth.

But, if she can/has learned that - then she can do it herself! And how wonderful that must feel for her!!!

I really am thrilled. Just thrilled. And I really hope that dinner is as exciting as I'm hoping it will be. I bet Murphy will be excited, too, and I think that will make Harlie feel excited for herself! Now, hopefully I won't crash later.

A SIPPY CUP! Holy cow.

Okay, more later!

Tuesday, March 9, 2010

Norfolk Trip

Our trip to Norfolk today went great. The traffic was good on the way there, and on the way back. We arrived early for our appointment (a NEVER for me). Harlie was fine until we got into the room where she is weighed and vitals are taken. Then she just started to cry. One of those sad cries. Ugh.

Once we got into the exam room, Harlie sat on my lap and put her head on my shoulder. I decided to talk to her as if she could understand everything I was saying. So, I told her that I knew that she was scared and that it was going to hurt for a little bit, but after it was over we were going to the mall to play and she was going to have fun. I have no idea if she understood any of it, but I figured it couldn't hurt to try.

There was nothing really to say to the doc, as she seems to be doing well (so far) on this new med, Levaquin. Her back still has the marks of her hives from last week. It's almost like the hives turned to freckles. I'm sure they will fade in time.

The vascular access team (VAT) came to change her dressing. All four of them. It is a very small room, and there were six adults, two kids, two strollers, two chairs and the exam table in there. It was very crowded. Since they clearly didn't need me, or Cooper (and all people in the room have to be masked) I took him and a stroller and left the room. Brandy came out with Harlie just 15 minutes later. It was the quickest dressing change so far.

We practically ran out of the hospital and to the mall. Here's the play area...

Here's a happy (and overly tired) Cooper (sporting his new buzz cut).

The last time we were here, Cooper was bound and determined to be able to step off this .. whatever you call it. He would step off (like a big kid) and fall down. And he would get back up and try again. And he did that at least 30 times! But he mastered it. He walked off it this week on his first try.

Here's a much happier Harlie. She ran all over the place.

Here's Cooper and my friend Melissa's daughter, Isabella.

I thought for sure Cooper would sleep on the way home. He was up ALL night last night crying. I have no idea what his problem was. He slept a little on the way down there, but only less than an hour. He was a bear to put in bed, but hopefully he'll sleep soundly through tonight.

And speaking of sleeping... here's a pooped Harlie on the way home.

Hopefully the rest of our appointments will go this smoothly.


Video of Harlie dancing

So, I was looking through some pictures and came across this video of Harlie dancing in the mirror of our downstairs half bath. It was taken in November 2009, before her most recent jaw surgery. If you listen closely, at the end you can hear her say "uh-oh" because she almost falls. It think she is such a funny little girl.

No, she's not wearing any underpants, but I think that's hardly noticeable, so I'm posting it anyway. If memory serves, she had just gone potty and I went to check on her and found her dancing on the toilet - not something I had seen before. Capturing the moment was far more important than getting her dressed.

Now that's really it for tonight. More later!


Monday, March 8, 2010

Harlie's Toothless Smile

I know it has been a few days and no new post. Nothing to be alarmed about. Just busy days with not enough computer time. Harlie is happy and she has been loving the warmer, sunnier days we've had lately. Well, who isn't, right? I know that I am more ready for spring and summer than I have ever been!

Tomorrow morning we are headed back to Norfolk for our weekly appointment with the Infectious Disease docs. Hopefully this one will be a lot shorter with less drama and less elevators!

We are trying again to meet my friend Melissa and one of her daughters so the kids can play in the play area at the mall. I am bound and determined to give Harlie some sort of reward after these appointments!

Harlie has been doing really well with her communication device. The other night she coughed during dinner, put down the puzzle she was working on, grabbed her device, (at this point Tom looked at me and said, "this should be interesting" as we watched her do this) turned it on, navigated to the page she wanted like a pro, and pressed the "I need to be suctioned" button.

Tonight, after dinner, she used it to tell us she wanted to go outside. None of this is "new" communication for her, as she can communicate those things with signs, but the thing I find amazing is that she gets that she can use it to "talk". And it is going to be SO cool when she uses it with someone who doesn't know sign.

Anyway, it is late, but I just wanted to leave you with some pictures I took of Harlie outside on Sunday. These are the first pictures that show her missing tooth.

As you can see, she digs accessories. She loves hats and she won't even consider going outside without sunglasses. Period. So, needless to say we've built a small collection. This particular pair is from a group of girls I used to work with many years ago (back before Murphy was born!). A couple of them brought me lunch a week ago and a get well/recovery bag for Harlie stuffed with goodies. How cool are they?

To be honest, while I think she is adorable, I'm still having a hard time getting used to it. The wire on her right side went between her lateral incisor and her canine and pushed them apart. To me, this gives the appearance that she's missing two teeth. That's the part that bothers me most. And now that she doesn't have the front one, the lateral incisor has nothing to push it back over to where it was. So, I assume it will stay the same for the next few years. Guess we'll have to see what the dentist says - when we ever get that back in our schedule!

Well, that's it for now. I'm hoping that tomorrow will be a good day with some fun at the end. I'll let you know how it turns out...


Wednesday, March 3, 2010

A Good Night.

You know those moments when you look at your kid and you think your heart might explode because you love them so much? Well, I had that kind of night tonight. And after my super long post from last night, I thought my faithful, wonderful, much appreciated readers deserved a good, normal, loving post.

I don't know what got into Harlie tonight. But she was the absolute cutest little girl I've ever seen. I honestly thought I was going to melt.

We were getting ready to sit down for dinner and I put Harlie in her chair with her communication device. I thought I would let her sit and explore while we were having dinner. We were having dinner in the dining room and we were going back and forth into the kitchen putting food on the table. I heard her cough and then I heard the communication device (it has a kid's cute little voice) say "I need to be suctioned." Tom and I stopped in our tracks and just started laughing. It was SO weird and so wonderful to "hear" her say something! Especially when I know she "said" that on purpose!

Later, Cooper was holding his most favorite snack (graham cracker sticks) and Harlie went over to him and it appeared that she was taking the box away. This, of course, made him scream and fight for the snacks. But, I know she doesn't want the snacks for herself. She just wanted to open the box for him and feed him. So, I signed to her "do you want to help Cooper open the box?" And she signed "yes" and went and sat down next to him. She reached in the box and fed him one. It was SO cute!

And it was almost like she was so appreciative of my understanding what she wanted. Like she was fully expecting us to yell at her. And it really looked like she was so glad that she was understood. Ahhh, what a good little moment!

When we were putting Cooper in his crib, Harlie looked through his toy baskets and found a little stuffed mouse and gave it him. She really is so thoughtful sometimes!

When I was putting her in bed, I gave her her night meds and water. She saw the syringe coming, so she held up her nightgown so I could get to her mickey button. As I was giving her water, she held up my shirt, looking for my mickey button! With her head cocked and her face all curious - looking for my g-tube, I couldn't help but laugh. After she didn't find one, she just put my shirt back down and went back to her book. I have to say, I almost felt bad I didn't have one, too. Think of how tickled she would have been if she looked and there one was - one just like hers! Guess I'll be performing surgery on one of her dolls pretty soon, huh?

And just seeing her walk around - especially when she's excited and walks really fast - in her night gown just made me smile and completely warmed my heart.

Tom took Murphy for a much needed haircut and then stopped at the grocery store on the way home. And then he gave Cooper a much needed haircut. As he was clipping Cooper's hair, Murphy and Harlie came in looking all curious. The kids all got baths, and then went to bed cooperatively with nothing but smiles and laughter.

After a day like yesterday, I'm thankful for tonight.

Thank you to all of you who hung in there and actually read my entire post recapping Tuesday's events. You are true readers and I'm thankful for you, too! Can't you just feel the love?

I just ride the waves when they come.


Tuesday, March 2, 2010

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.


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.


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!

Two weeks down, six to go.

Hi, I'm sorry it has been so long since my last post.  I have so much I want to say.  I've started to write this post several time...