Quick update.

Harlie seems to be getting back to her usual, happy self. She was very smiley today. She is doing great wearing her helmet. She is wearing it the full 23 hours a day now. And she really doesn’t seem to mind at all. We take it off to give her a bath and I will take it off during tummy time and to let her roll over.

She had physical therapy today and we left it on during the whole session. Hopefully the weight of the helmet is helping her gain some strength. Her physical therapist said she is doing really well. Harlie even sat up by herself for a few seconds. Hopefully once she learns how to balance and realizes she can use her arms and legs, she’ll really take off.

We went to see the GI doctor and nutritionist yesterday. Nothing too eventful there. She has C-Diff again. That’s a bummer. She had to have Vancomycin again in the hospital, so that’s not surprising. Plus, she’s on an antibiotic for her ear infection. She’s now on 7 medications. Ugh. We were down to 3 at one point.

We see a new ENT doc tomorrow (here in Richmond). The only ENT we’ve seen is one in Dr. Magee’s practice in Norfolk (other than hers in DC). Oh, you should see Harlie when Murphy walks in the room – she goes crazy! Her arms start flapping and she kicks her legs and laughs. It is so funny! Well, just a quick one tonight. I hope you are all well.

Take care,
Christy

Say it isn't so!

So, lazy Sunday, both Tom and I are feeling awful (colds, sore throats, etc.) when the phone rings. It's the doctor from MCV. He tells us that the blood culture they took during our Friday ER visit came back positive for Staph aureus (type of infection in the blood). I'm betting the culture was contaminated.

Although she's still tired a lot, and still requires O2, she has NOT had a fever. But, he said that we had to bring her back. And this time she would definitely be admitted (no talking my way out of this one) until another culture came back negative. And they have to give her Vancomycin (IV antibiotics) to be on the safe side. UGH!

Sometimes I feel like I'm going in circles!!!! Vancomycin is what probably led to her C-Diff. Which is probably what led to us being here - again - for the 3rd time in 5 days! I really am getting to know too many people here. It's scary. Nurses that had not had Harlie before already knew her history.

So, now we are back up in the Progressive Care Unit. But this time, we have a private room - the isolation room. So, that makes it better. I spoke to one of her cardiologists and told him I would REALLY like to be outta here by Tuesday morning. She has her appointment with Dr. Magee at 11am in Norfolk and I really don't want her to miss it. Especially since she's seeing ENT and I have a ton of questions for him. I know that wanting to see her craniofacial plastic surgeon might sound superficial, but it isn't. He is the one that will do the repair that will get her trach out. And after Tuesday's craziness - we REALLY want that trach out!!!

Oh, and on Thursday night she pulled her trach out for Tom when I was out. He got it back in, though, without too much trouble thank God.

So, hopefully, her blood culture from today will be negative and we will be able to leave here and still make it to her appointment in Norfolk on Tuesday. And she gets her helmet on Wednesday. So, we have a busy week and cannot be hanging out here at MCV! So, please keep your fingers crossed that everything is okay with her and that there isn't a more serious underlying issue they haven't found yet. Hopefully, this is just another speed bump and we will be back to making progress soon.

Thanks for your continued support. We really appreciate it.

Take care,
Christy

C-Diff and rambling...

So, the C-Diff (short for Clostridium difficile) test came back positive. So, now she’s on antibiotics to treat that. Here is a little explanation that I found:

C. difficile bacteria are everywhere — in soil, air, water, human and animal feces, and on most surfaces. The bacteria don't create problems until they grow in abnormally large numbers in the intestinal tract of people taking antibiotics or other antimicrobial drugs. Then, C. difficile can cause symptoms ranging from diarrhea to life-threatening inflammations of the colon.

It went on to say that it is most often spread while in the hospital. And to add to the risk, she was on so many antibiotics during all her line infections, including Vancomycin, which evidently is pretty powerful. She started showing symptoms while in the hospital, but everyone attributed them to her formula change. I am so glad that her nutritionist suggested the test. Hopefully, once we get this under control, she will start to gain weight again.

On Thursday, Harlie got another mold of her head made for her helmet. It should be in the second week of June. And hopefully she’ll be able to wear it with no problems so we can get her head fixed. I know it is hard to tell in the photos I post. I will take a picture from the back so you can see, too. My only fear of her being able to tolerate it is that it is so darn hot, and it is summer. She will have to wear it 23 hours a day for several months. So, we’ll just have to keep her in the a/c.

After that, we went to see her pediatrician. Nothing major happened there. Just him getting to know her and to talk about her upcoming appointments.

On Friday, her physical therapist came to see her for the first time since March. She was very pleased at how well she has done despite being in the hospital for the last 2 and a half months. She is going to come at least twice a week for the next couple months. Hopefully, between that and me working with her the rest of the week, Harlie will be sitting up on her own very soon. She has so little fat on her bum, that her tailbone is incredibly sharp. I am a little worried that sitting up for an extended period of time might hurt her. But, hopefully with the new antibiotics, we’ll start to see a faster weight gain. And maybe by the time her balance and strength can handle sitting up, she’ll be fatter.

Oh, on Thursday night I went to see Martina McBride, Rodney Atkins and Little Big Town at the coliseum with Nancy and some of her friends. I wasn’t really a Martina fan before, I was just going to go out with the girls, but seeing her live gave me a new respect for her voice. Rodney Atkins opened for her and he sings a song called If you’re going through hell. It came out last summer and the first time I heard it – it spoke to me. Of course, I was pregnant with Harlie and we knew about her chest mass and heart defects. Tom and I said that was our theme song. For those of you that don’t know the song, here are some of the words:

Well you know those times
When you feel like there's a sign there on your back
Says I don't mind if you kick me
Seems like everybody has
Things go from bad to worse
You'd think they can't get worse than that
And then they do

If you're going through hell
Keep on going, don't slow down
If you're scared, don't show it
You might get out
Before the devil even knows you're there

Anyway, it is funny how you think some songs were written for you. I think it still applies. Monday is the last day to get your Pampered Chef orders in. Well that’s it. I think you are all caught up. I hope you are all well. Talk to you soon.

Take care,
Christy

Weight gain issues

Hi. Well, we had her pulmonary appointment today. Her lungs sound good. But, I am pretty discouraged at her weight gain – or lack thereof. The last week we were in the hospital (a week and a half ago), she weighed 12.9. Then, at her pediatrician’s appointment, just a few days later, she weighed 12.12. Not bad. That was exactly one week ago today. And today she weighed 12.8.6. So, I suppose I could round-up to 12.9. Either way, I can’t help but be frustrated. She is still the size of an average 3 month old.

So, I chatted with her nutritionist about it. Unfortunately, we can’t up her volume or her calories per ounce. Her food is already packed with as much protein as her body can handle. We are going to try putting a little karo syrup in her formula to see if that helps. That will give her more calories.

They are also going to test for C-Diff. That is an intestinal disease that she could have gotten because of all the heavy antibiotics she was on in the hospital. Basically, the antibiotics can kill good bacteria, too, and that can allow the bad bacteria that are always there to take over. Some of the signs that she is showing could be explained by her formula change, or her meds (she’s still on diuretics to help her body get rid of fluid, which make her dehydrated, which makes her secretions thicker, which makes her gag on her secretions, which makes her vomit). Isn’t this fun?

At any rate, that might help explain her weight gain issues. I don’t know if I want her to have it or not. In one way, it would be an answer that can be corrected (although sometimes it can be very difficult to treat). But, if it isn’t that, then it could be something else…

So, hopefully we can get an answer to that in a few days. All I know is that I want her to start gaining weight!

Oh, I forgot to mention that I added more photos. And, just a little reminder, the Pampered Chef Fundraiser ends on June 4th. Thank you for all of your support.

Take care,
Christy