Wednesday, December 24, 2008

Christmas Eve...

I can't believe it is Christmas Eve already! For some reason I feel like I should write about something deep - like the meaning of Christmas for me and my family or something like that. But I really don't feel like being too serious right now. I just want to enjoy the moment for what it is. My three wonderful kids are home and appear to be well. I am getting over a very quick cold (miracles really do exist!). Tom has the next two days off from work. And my family is coming over tomorrow. What more could I ask for? Oh, and it's my birthday. Who doesn't love turning a year older once you're over 30?


Since it's been a week since my last update I'll just take a moment to give you a quick one. Last Wednesday, December 17th, Tom's Grandmother (Francis "Fran" Holton) passed away in Pittsburgh, PA. She was 88. She had Alzheimers Disease for the past several years and just a few months ago she fell and broke her hip. Her and her husband (Albert "Al" Holton) had their 60th wedding anniversary this year. Pretty amazing. She was a wonderful woman and I will always remember her Pittsburgh accent. If you've never heard "Pittsburghese" you're really missing out. It is something else! Click here to hear an interview about it. Tom definitely had more of the dialect when I first met him (10 years ago!) but 17 years in the south (including Charleston, SC) finally worked it out of him. Which is kind of a shame.


Anyway, since Harlie was still dealing with extra oxygen, and getting my family in a car at the last minute is virtually impossible, he went to Pittsburgh alone. I wish we could have gone, but I don't think Tom was ready for Murphy to go to his first funeral (that he would remember - he was at my Grandmother's funeral in 2005).


On Friday morning (right before Tom left) we took the kids to see Santa. Murphy actually talked to him, which kind of surprised me. Harlie wanted NOTHING to do with him, which didn't surprise me. Tom put her down in front of Santa and as soon as her feet hit the ground she started walking away - and CLICK! picture taken. Great.



On Saturday, I was very proud of myself. I took all 3 kids to a birthday party for my neighbor's son, Cole. He turned 4. It was at a gymnasium and the kids had a great time running and jumping all over the place. I was a little nervous about taking the kids by myself. And I could have asked my Mom to go with me. But I really wanted to do it. I just felt like it was a hurdle I needed to jump and get behind me. And it went great! Although I must admit that I got lucky. Another one of my neighbors got there at the same time and she took Murphy in and got him settled for me. Then as I was carrying 2 diaper bags, the suction machine, Cooper in his carrier and trying to get Harlie to go up the stairs, Cole's grandfather came out to help me. He took Cooper so I could pick up Harlie. Then he was so great with Harlie. He took her into the gym and helped her on some of the equipment so she could play, while I was feeding Cooper. I'll have to ask Cami (Cole's mom) if she got any pictures of the two of them together because they were so cute! I just can't explain how it makes me feel to see people look past Harlie's differences and see her as the amazing little girl she is. Her smile is so contagious and I feel so much better about her future after watching people play with her.

Then on Sunday I worked at Mountcastle Homes (my job before I had Harlie). I just fill in on occasion when he needs office coverage. It's always a nice break from my life to go back into the office and remember simpler times. Then Tom got home and took Murphy to the club to watch the Steelers. Unfortunately they lost to the Titans. Oh well, at least they made the playoffs, so football season isn't over yet.

Then on Monday Brandy and I took all 3 kids to a Christmas party at my friend Kim's house (her daughter has a heart defect, too). I'll post more about that later, because that is a wonderful story I want to share with too long of a story to write tonight.

Then on Tuesday Murphy went to my Mom's for cookie making day. It was chaos. I mean TRUE chaos. Seriously. I'm not exaggerating. I think my Mom's crazy. Wonderful, too. But crazy. But I guess that's what Nana's are supposed to be. Makes for great stories later. Which my Mom is FAMOUS for. How my older siblings survived their childhood is a constant source of laughter when we're all together.
And now you're all caught up. Wow. This post is a lot longer than I thought it would be. And I forgot to mention the BEST part! Harlie is now officially back to her normal self. No more O2 during the day!!! Woo Hoo!!! I am so much happier now that she is happier and healthier.

Well, I hope you all have a wonderful Christmas. Thank you so much for caring about Harlie and my family. We are so grateful to have you in our lives.


Merry Christmas!
~Christy

Wednesday, December 17, 2008

She's getting better...

I have a few minutes so I thought I would post a real quick update (just in case any of you were worried about her). She is getting better. She's still on a little O2, but it's definitely decreasing now, which is a huge relief for me. Well, I "knew" she'd recover eventually, but I just like it better when she's better (duh!).

We went back to see her pediatrician yesterday and she got her Synagis shots (the ones to help prevent RSV). She gets one in each thigh. Last night she signed "hurt" to me and I asked her, "where, show me where you hurt" and she pointed at her thigh. Pretty cool to have that little "conversation" with her.

Anyway, I asked her doc about the antibiotics she was on. She was on them for 8 or 9 days and she certainly wasn't improving the way she should have been if they were actually working. So, I guess we can safely assume that it was viral. Anyway, the meds gave her diarrhea, which has resulted in the worst diaper rash I have ever seen - and she's had a lot of them! So, he peeked in her ear and of course it is still full of fluid and infected (probably will stay that way until she gets another tube put in) so he changed her meds to something else that will hopefully help her in the GI department. We went from one extreme to the other! I put some baby food back in her formula so maybe we'll be able to balance her out a little.

Well, all three kids are quiet now so I want to try to get something accomplished in the house. Just wanted to let you know things are improving. Thank you for all your support. I always feel bad when I post a crummy post. But I suppose to only post positive posts really isn't being that honest. Things aren't always good around here and I certainly have my down days, that's for sure. But we bounce back and I guess that's what's important.

Thanks again!
~Christy

Sunday, December 14, 2008

She's home.

Sorry it took me so long to update the blog. I usually only like to write when I’m feeling good about things, and to be honest, I’ve had a hard time feeling good the past few days.

She was discharged late afternoon on Thursday. One of the residents said that they weren’t going to discharge her until she was back on room air. I almost freaked. But then Harlie’s doc, that knows us well, said that was silly if I could provide the O2 at home. Whew!

I have to tell you, if I had to stay in that “room” another day I think I would have lost it. I can’t begin to tell you how incredibly small it was. Heaven help the patient that’s in there during an emergency. There is absolutely NO room to move around the crib. The only chair (which is also the bed) has to go in front of the suction control – so that meant that I was the only one that could suction her. I seriously can not express how uncomfortable it was to be squished like that. Every time a doc or nurse had to do something it meant a lot of moving things around and squeezing by one another. It was truly awful. I really can’t believe that they expect someone to be able to stay there for any length of time whatsoever. As if it isn’t hard enough just being in the hospital!

I can’t believe how much harder it is to leave her alone in the hospital. Well, really it isn’t an option. Now that she knows when she needs to be suctioned (she tells us and goes and turns on the suction machine and when we’re done, she turns it off) she understands that she is dependant on someone to help her breathe. How could I possibly leave her alone knowing that she is going to cough and want to be suctioned, knowing that there’s no one there to do it? I have to make her suffer enough, I simply can’t do that to her, too!

Anyway, I really hope that the uncomfortableness of the room didn’t influence my decision to take her home. And I guess it’s not exactly completely up to me anyway. There are doctors that have to feel good about it, too.

As far as what was/is wrong with her, it’s really only a guess. They are thinking that it must be some kind of virus/bronchiolitis. There is no apparent evidence of that – her lungs sound normal, no excessive coughing and the x-rays are fine. But she needs extra O2, which is NOT normal. And her heart looked good on the echo, so it can’t be that. They said that the antibiotics that she’s on now should fight whatever it is and that she will get better in a few days and should be able to come off the O2. But Monday will be day 7 on the antibiotics. I just thought that she should be making more progress coming off the O2 by now.

This “sickness” has been a hard one for me to wrap my mind around. She has been WAY sicker and didn’t need O2. I just don’t understand how she can appear to be fine, but still need the O2. It just doesn’t sit well with me. I guess because watching the pulse ox like a hawk, seeing low numbers and willing them to rise just takes me back to worse times. I just feel like we’ve taken a step back and that’s not the direction I want to go. Not to mention it is a complete pain now that she is mobile. Which, I even feel bad saying because I am so thankful she’s mobile and that she doesn’t require more equipment than she does. But I gave her a VERY quick bath and took her off the O2 for just a few minutes and when I hooked her back up she was in the low 60s!!! Now I know that doesn’t mean much to most of you – but that is LOW. Even for Harlie. The typical person has sats close to 100. Her sats are mostly in the 80s, which is fine for her given her heart defects. I think after her next heart surgery, they should improve. Anyway, so the 60s is crazy. And stressful to see, no matter the explanation.

And all this just knocks me back into a reality I don’t want to deal with. Harlie has been doing so great that I forgot how complicated she truly is (medically I mean). And I just don’t like being reminded of that. A simple cold to one child is something that lands her in the hospital. And this sickness alone meant dealing with several different specialists and it is really hard to put all the information together to come to a conclusion. And the person who really has to do that is… ME!

So, between Cooper being sick and trying to keep him out of the hospital, Harlie being sick and trying to keep her home and this horrible economy which has directly affected my family, we have to dig way down to try to find that Christmas spirit this year. Oh, speaking of Christmas – I didn’t do Christmas cards this year. So, when you don’t receive one from me – don’t be offended!

Well, that’s it for now. Thanks for all your well wishes!

Take care,
Christy

Wednesday, December 10, 2008

Admitted

What a long day! And after a day like today there is nothing better than settling into this uncomfortable pull-out chair in a very cramped "room" separated by curtains, with our neighbor leaving all the bright lights on. Ahhh...

Yes, she was admitted today. Ugh. They ran more tests - urine, repeat blood work, x-rays and an echo (ultrasound of her heart). All came back okay. Her RSV test was negative. So, they don't know the source of the infection. At one point the doc told me she had pneumonia. But then just a few minutes later he came back to tell me the radiologist said it wasn't pneumonia. Her echo looked good, so we know her heart is good. Her white blood count has come down from 33 to 25, so it looks like the infection is responding to the antibiotics.

This hospital stay is a very different experience. The last few we've had have been for surgeries, so she's had sedation meds, etc. She is so much more aware now, and mobile. In the ER they have beds with side rails. So, I could not leave her side. She could easily stand up and fall over the rails. And she had a fit when I tried to leave anyway. She has really had a rough time lately with all the poking and prodding, so she was a handful to say the least. She's definitely a fighter, even when she feels bad. To get the IV in it took 3 people to hold her down. I absolutely hate being one of those people. It kills me to watch her go through that. And it takes forever. When they tried to get a urine sample, they had to try 3 times! It was agony! Finally she just peed in the bed so they scooped up their sample and Harlie finally got to rest a bit.

Of course in the ER there is no cell connection and no phone in the room. So, it was hours before I could call Tom to let him know what was going on. Not being able to leave her for just a second is very inconvenient. Forget about being able to eat or drink or go to the bathroom. But when you're busy torturing your kid, you kind of forget about those things.

And getting the boys set up with care is a whole new issue now. Before Murphy was in school, so all I really needed was someone to take him and pick him up. Now he has to be picked up by 12:30 and Cooper needs care all day. I am very thankful my mom is retired and very willing to help out. So, she came over this morning so I could bring Harlie down here. Now I won't be home until tomorrow (hopefully) and I miss him! This is the longest I've been away from him and I don't think I was ready!

Tomorrow is going to be a challenge. I am supposed to be in family court as a character witness for my night nurse. She is trying to get custody of her granddaughter and with her taking care of my special needs child, they said that I should be very good for their case. I really hope she gets her, so my mom is going to come here to the hospital to relieve me so I can go home, shower, find something "nice" to wear and go to court. I have no idea how long it will take. The lawyer said that I might sit there for hours because she has no idea when I'll be called in. My friend Jennifer is going to come and pick up Cooper in the morning and keep him for us. So, thank you Jennifer! Then I will come back to the hospital and if things go our way, she'll be feeling much better and she'll be ready to go home.

Although, I think if you asked her, she'd let you know that she's ready to go home now. Earlier she took off her pulse ox probe, tried to put on her shirt and pointed to the stroller. For a girl who can't talk she sure can say a lot!

Well, it's 10pm and Harlie finally just fell asleep. I am dreaming of my comfy bed and pjs at home. I hope they will discharge her tomorrow and that she will improve from here on out.

Take care,
Christy

Back to the ER...

Just a quick update to let you know that I am taking Harlie back to the ER. Hopefully we'll get some answers today. She's on a lot of oxygen with still low sats and until I know why, I'm just not comfortable with that. And she definitely feels bad today.

I'm going to take my computer and hopefully the wireless is in the ER so I can update as I can.

Wish us luck!
Thanks,
Christy

Tuesday, December 9, 2008

Another trip to the ER...

Yesterday Harlie woke up and seemed sick. She sat on the couch and didn't move. Then I noticed that her breathing was very labored. We haven't seen her breathe like that in a long time. So, I called her pediatrician and got an appointment. Of course, I had to cancel her ortho appointment to replace it with the ped appointment. But, she wasn't feeling good anyway, so I'm sure it was better to cancel that one. It's just her annual spinal check and I think that can wait till after the holidays. I am trying really hard to not overwhelm our schedule anymore (a true challenge for me).

Anyway, so Brandy and I load up the kids and go see Dr. Derco at 3:30. He does not like her color (her nail beds were blueish) or her labored breathing. Her secretions are thick and frequent (had to get up numerous times the night before to suction her, which rarely happens anymore) and she had a fever of 100.2. Oh, and we've had to turn on the oxygen a lot lately. Her sats have been hanging out in the 70s instead of the 80s like normal. So, he said I had to take her to the ER at MCV. Lovely.

So, I drop Brandy and the boys off at home, call my mom and ask her to come over and I take Harlie to MCV. I was so lucky and found street parking right near the ER (that has NEVER happened). We check in and they said a nurse would come and get her. Oh, when we checked in the nurse at the front desk asked what her sats were and I said 70s and she almost freaked out. She started to run and get some help and I told her it was okay. She's a cardiac kid and she's fine. She said, "Whew"! It was funny.

Anyway, the nurse that came to get us was Stephanie! The same nurse that we had when we spent 50-some hours in the ER a year and a half ago. It was so nice to get there and be welcomed by her. Plus, it helps when the nurse remembers Harlie's history. It was great.

So, they took a couple x-rays, started an IV (torture as usual), took some blood, and nasal swabs for testing.

The quick version (Cooper's starting to stir so I gotta be quick) is that the x-rays were fine for her chest, but she is very backed up in the poo department. UGH! And she's been pooping. No applesauce for Harlie today. And her white cell count was 33 (normal range is 5 to 10), so she's fighting off some bug for sure. Oh, and at 5:30 her temp had gone up to 102.8! We won't know the other results until some time today. They have to wait for something to grow in her cultures.
I was thinking she got RSV since Cooper just had it, but I don't think her white cell count would be so high with that, but who knows. They said that an elevated white cell count usually means a bacterial infection vs. a viral infection. So, they gave her a Rocephin shot (hate those) which is a strong antibiotic med. They wanted to give it through her IV, but it went bad before they could do it and it is worse to get another IV started than to just get one shot and be done with it. Plus, she did get her Synagis shot last month which is supposed to help ward off RSV.

Oh! And the doc that was on was the same one we've had before and she remembered us. And the nurse that relieved Stephanie at 7pm was Angela - a Steeler fan club friend of ours. How great is that?! They all couldn't believe how big Harlie has gotten and they all said that they couldn't get over her hair. It is really coming in thick now (which is a huge relief for me). So, the stars were aligned for us last night as far as care goes.

Anyway, the doc asked me how I felt about Harlie's condition and I said I was fine to take her home and that I knew my night nurse was coming in. So they let me take her home. Angela said that she would have been admitted for sure if she was a normal kid. But I am very comfortable taking care of her when she's sick and we certainly have all the necessary equipment. So, at 9:30pm we left. Another very long day. On my way to the ER I had to wonder when life will settle out and not be so frantic all the time. I just hope I have the energy to keep up.

Oh! And she was supposed to go to Children's in DC this morning to have a tube put in her ear, but clearly we had to cancel that. I didn't feel like driving that today anyway. And they said we had to be there by 6am - which means leaving here before 4am. Yuck! I do feel bad cancelling at the last second though because Dr. Preciado really went out of his way to get her in so fast. We didn't want her to go too long without the tube because she is constantly getting infections. Oh well, such is life I guess.

Well, Cooper needs me now. So I must run. Talk to you later!
~Christy

Saturday, December 6, 2008

My Overwhelming Day...read at your own risk.

So, another busy week has flown by. I knew I would be busy with 3 kids, but geez.

Monday was a pretty miserable day for Harlie. Which made it pretty miserable for me, too. I HATE seeing her miserable. It hurts me. What was the problem you ask?

WARNING: The following may contain graphic language and subject matter. I apologize now if I offend you. But, such is life with toddlers…

The day before Thanksgiving we started giving Harlie some baby food mixed in with her formula to begin making the transition to a blenderized diet (a blended concoction of baby foods and other ingredients to make her diet more typical for her age and development). The recipe was 2 small jars of baby food bananas plus 4 cans of her formula. Mix all together and divide into her 5 feedings per day. Great, right?

Well, it wasn’t great. After a few days, she went a day without pooping. VERY unusual for her. Clearly, her body was adjusting to the bananas. Fine, I thought. I’ll give it another day or so. I mean, how much damage could a couple jars of bananas do anyway?

Um, A LOT! By Monday morning, she was MISERABLE. Couldn’t play or do anything. My friend, Jennifer (Harlie’s PICU nurse from MCV) was working with us that morning. She agreed that Harlie was definitely in some pain. Jennifer went in with lubed gloves to check out the situation (thank God for nurses!) and she found that Harlie’s bowel was impacted with poop.

You might remember that Harlie was born with an anoperineal fistula. Basically, her anus wasn’t located where it was supposed to be. The muscles were in the right place, but the opening was not in the middle of those muscles. So, just a few days after she turned one, she had a surgery to help repair that. I say “help” because we aren’t sure if that one surgery did the trick or not. The surgeon said he might need to do another one later, but we’ll have to see how she does. He also said that it will take longer than normal to potty train her (maybe by age 4) because it will take a while for her brain and the muscles around the opening to coordinate and work together. One thing he said for sure is that she should NOT become constipated. She lacks the ability to push it out and it could prove to be dangerous for her. He said at some point – depending on her diet – she will need to take supplements to help her stay regular.

Sure, I heard that. But I just didn’t realize how truly important it was.

Until now.

So, back to Monday…

Jennifer had to leave around noon. And I have to pick Murphy up from school at 12:30. Harlie had physical therapy at 11:30, speech therapy at 12:30 AND we had our annual meeting with the Services Coordinator of the Early Intervention Program (through Henrico County) at noon. So, I had to go and get Murphy early, since I wouldn’t be able to leave at 12:30. Which meant he would be home during all this chaos, when I needed to be focused on the meeting. The meeting was to see what goals she has met and what new goals we need to set for her for the coming year. The goals have to be VERY specific so it can be determined if they were met or not. For example, brushing her teeth. Do we want her to be able to brush her teeth for a minute, or just be better at it or both? My point here is that I really needed to be able to focus on this. Not an easy task with 3 kids – especially when all 3 need you at the exact same time. Which was the case, of course.

Murphy wanted to make his own peanut butter and jelly sandwich (has disaster written all over it) and I was trying to help Harlie poop, and Cooper was crying. Nice. I thought that if I sat Harlie on the potty it might help her push it out. Keep in mind that I’ve never seen her push – with a liquid diet, pushing isn’t required. So, in order to be a part of the meeting at my kitchen table, I brought the potty out there and sat Harlie on it. What a nice scenario, huh? Oh, and at one point I heard Murphy ask, “Mommy, is this sugar”? No, it wasn’t – it was Thick-It, Harlie’s food thickener powder, which is white and does look like sugar. Thank goodness he asked me before he put a scoop in his mouth. It was truly chaotic and splitting myself into 4 different directions just doesn’t work.

After the meeting and her therapies were over I took a deep breath and tried to regain some order in my house. I think it was 3pm before I realized that the only thing I had eaten all day was a banana – at 6am.

Back to Harlie. After no success all day, I started making some phone calls. Again, tried some other things, no success. We had a very serious situation here and I was getting really worried. Nothing could be given through her g-tube that would help – it was too far down and right near the opening, that nothing given “orally” would do any good. Somehow we had to get it out of there. So, I put on some gloves, lubed up and tried to see what I could do. Murphy asked me what I was doing and I told him that I was trying to help Harlie get the poop out. (Lovely toddler-speak.) He thought for a second and then said, “Well, Mommy, you should tie a string around it and pull it out”. If only…

At one point during the day Harlie was crying those big silent tears and signed “hurt” to me. I just taught her that sign about a week ago and this was the first time she used it completely on her own. Oh, just rip my heart out, will ya?

So, Jennifer suggested we try a milk of molasses enema. It’s something they do in the PICU. She described it to me and I cringed. So, of course, I begged her to come and do it for me. Which, thankfully, she did. She is such a good person and I am lucky to have met her.

At this point, Harlie was running from all diaper changes and the wipes. Poor thing. So we set up for the procedure and we got down to business. It was awful. Holding her down was truly traumatizing. But, thankfully, Jennifer was successful. After it was all over, Harlie was spent. I gave her the quickest bath ever and got her to bed. She was asleep in seconds. And now, she is fine. She’s now on Miralax daily, and we stopped the bananas and replaced it with applesauce. Things are definitely better. But I can’t believe I let that happen. NEVER again! Luckily, I have since learned that we aren’t alone and that this isn’t that unusual. Although it certainly felt like it at the time. So, thanks Donna for making me feel better!

And I suppose we’ll have to take this blenderized diet a little slower. But, can you get slower than 4 ounces of baby food per day? Hopefully it was the bananas. Maybe if we avoid bananas, we can make some progress. Hopefully she’ll be eating a blenderized diet by the time she’s 5.

Take care,
Christy

Monday, December 1, 2008

Boys keep you on your toes.

Today was probably one of the most overwhelming days I've had in a long time. It requires more time and energy than I have right now to tell you about it. So, hopefully I'll get some time tomorrow to write.

For now, I'll just tell you about one of my recent conversations with Murphy. They are always so interesting and sometimes I just am so distracted I don't see where they are headed.

The other night, between giving Harlie water, suctioning, changing diapers, etc. Murphy, holding a cordless phone, says, "Mommy, where's the number 9?" Clueless me, who is on my way to another task, stops suddenly, thinks to myself - he knows what the number 9 looks like - turns around and says, "Oh, right here, sweetheart." As I go back on my way to complete whatever it was I was doing, stepping over toys, children, etc., I barely happen to hear Murphy say, "I'm going to practice calling 911". WHAT?!?!

If I could spell the screeching sound you hear when brakes are applied strongly and suddenly, I would. Because that's what I heard in my head when I could not turn around and run to the phone fast enough. Thankfully, he did not have a dial tone when he dialed 911, but it was there, on the screen, big as life. WHEW! That was a close one.

Little boys. They sure do make life interesting.

Take care,
Christy