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