Wednesday, April 30, 2008

My Rant

So, I got a call this morning from Dr. Lanning, Harlie’s surgeon who is doing her nissen. He said that there is a conflict with her surgery date of next Monday (May 5th) and that they had to move it to May 14th!!!! WHAT?!?!?

He said that after we left on Monday, he spoke extensively with the anesthesiologists. Because of the risk of the CO2 in her abdomen, time is of the essence. Meaning that he needs to get in there, do it and get out as soon as possible. So, he needs one of his partners to assist him in her case. He knew that before and had his partner scheduled for the procedure this past Monday, but in all the craziness at the hospital, he did not realize that his partner has a conflict with next Monday and is not available until May 14th. He said that they both moved patients around to get Harlie in as soon as possible, but it was the best they could do.

Although I understand that, and want only the best situation for Harlie, I am still MAD! I just wish everything didn’t have to be so incredibly complicated for her – and us! The week of the 14th is not good for so many reasons. And since you asked…

1. It leaves NO room for error. The surgery will have to be done that day – period. She better not even THINK about getting sick.

2. I am not comfortable with having only 2 weeks between this surgery and her jaw reconstruction. The surgeon said it was fine, but I know Harlie and I know how things can get. If they end up having to do the open incision it could mean up to 6 days in the hospital! That only leaves her with one week at home before a MAJOR surgery. Frustrating.

3. We have an appointment to see Dr. Magee (her plastic surgeon) on May 13th – the day before her nissen surgery. I wanted to go down there with her all ready for surgery, us having completed everything we needed to prior to her surgery. I don’t want to give Dr. Magee any excuse to not do the jaw reconstruction as scheduled. (And no, the jaw reconstruction could not be pushed back easily – his whole plan is to do it during a specific physician’s program which is happening that week).

4. Early the morning after her nissen surgery, Tom and I have our 20 week ultrasound with the perinatologist. Considering it is the morning after her surgery, I do not want to be away from her bedside.

5. My friend, Jennifer, is a PICU nurse there and next Monday she was planning on working that night, so I knew I could go home, knowing Harlie was very well cared for. With the new date, Jennifer can’t work that night. She is working on the scheduling for the nurses that week, so she will not be on the floor as a nurse. Luckily, she said she could be there the morning after the surgery so she told me not to reschedule the ultrasound. I just feel better when I know the nurse that’s taking care of her, and I know if Jennifer is there, she’ll make sure she’s taken care of.

6. Tom has a project starting the following week, and him taking off all that time (to go to Norfolk on Tuesday, surgery on Wednesday, and ultrasound on Thursday) is just way inconvenient. Plus, that meant that rescheduling our ultrasound wasn’t really an option anyway (because he needs to be at the site the next week)!

7. Me and a friend are planning a baby shower for a friend and it is the weekend after her surgery, which if Harlie is still in the hospital will be very inconvenient, too! Luckily, I have family, and Brandy said she would volunteer some hours to help me out so I can do what I need to do for the shower. Thank goodness for good support!

UGH! Is your head spinning yet? People that think that changing ONE appointment is no big deal are VERY wrong. Oh, not to mention that we have 3 therapists that come to our house for a total of 4 appointments each week and clearly those appointments have to be shifted as well (again!).

I do have to say that the surgeon called me himself, was very nice and apologetic and seemed to start to understand how it snowballed other appointments as we talked about the new date. Please know that I am not mad at him. I am just frustrated at how incredibly difficult some aspects of our life, really is. I think that is really why I feel the need to write about it in this journal. There is a part of me that thinks if someone really “gets it”, then I won’t feel so alone in this journey. Caring for Harlie really is more than a full-time job. On top of just the physical care, managing her appointments and supplies, etc. is a job in itself!

I was on the phone the entire morning. I called Dr. Magee’s office to make sure that he is fine with the 2 week recovery period between her surgeries. He is. I also wanted to let them know that we should probably meet with the anesthesia team prior to her jaw surgery. This played a major part of our current scheduling nightmare. Dr. Lanning had spoken with anesthesia and let them know about Harlie and her complications. He even asked them if they wanted to meet her prior to the surgery date (they said that wasn’t necessary). Then we get down there, they meet her, and read her medical summary (which I put together for her docs and they all love it) and speak to us at length. And they’re like, whoa! Then they ended up speaking with Dr. Lanning after we left about all their many concerns. Which made me contact her cardiologist to ask him more about this because if it really is that incredibly risky, then I have to wonder if we should forget about doing it laproscopically all together and just go straight to the open incision (which would mean she would have a scar running from her neck to her belly button). I haven’t heard back from him yet. And while I know she will survive, her scars are less than appealing on a girl. One day, when she’s an enjoyable, fun-loving teenager (aren’t they all?) she might not love the scars so much. And to anyone who tells me, “oh, she’ll be just fine, they aren’t THAT bad” I want to say, “Give me your phone number and when she’s 13, and upset, I’ll have her call YOU to talk about it”.

The sad thing is that none of this really matters because it is what it is. I can’t change it. Despite the fact that we started this process months ago, it will come down to the wire.

Whew! Talk about venting! Sorry about that. I just feel like I have been SOOOO flexible, for SOOOO long, that I am just getting tired of it. I long for the day when appointments aren’t so close together, when I can be more picky about them, and when things are just plain more normal for my daughter and my family.

I’ll shut up now. Finally.

Take care,

Monday, April 28, 2008

Nissen surgery, NOT.

Well, unfortunately, things didn’t work out quite the way we wanted it to today. We got to MCV and went through the normal pre-op stuff.

Long story short:

The DaVinci robot that is used for this surgery was broken. Of course, they have to wait for the company’s rep to come out and troubleshoot the problem. Turns out they need to order a part. So, the surgeon came to let us know our options.

1. Cancel the surgery and reschedule for next Monday (he only does surgery on Mondays). The chances of saving her current g-tube site are about 80% with the DaVinci robot.

2. Proceed with the procedure without the robot. He would still try to do it laproscopically. The chances of saving her current g-tube site are about 65% without the DaVinci robot.

We chose option 1. To me, saving her g-tube site is a big deal. She is already covered in scars and one day it is going to matter to her.

After spending a lot of time with the anesthesiologists, we learned some new things about this procedure. In order to do the surgery, the surgeon has to fill her abdomen up with CO2 (carbon dioxide). This might adversely affect her circulation, due to her heart issues. If they get in there and doing it that way starts to affect her in a negative way, they will have to stop and go to the open incision procedure. Clearly, we don’t want this to happen for many reasons.

So, even though we might end up not being able to use the robot anyway, we decided that starting with the best chances was a better way to go. The surgeon checked his schedule for next Monday and bumped everyone back so Harlie could be first.

They all felt really bad about having us go through everything and get all geared up and ready for this surgery – for nothing. But, we told them we would rather it be right and at least this time we are still in the same city – so it really wasn’t THAT big of a deal. Last time we went ready for surgery and it didn’t happen it was up in DC and we drove up at 4pm and left to come home at midnight. So, in comparison, it’s not a big deal. Just another week of vomiting when I had hoped we were finally done with it for good. Oh well. Patience. Lots and lots of patience.

Thanks for all your well wishes posted on the guestbook (and e-mails and phone calls). I really appreciate it. We’ll just try it all again – same time next week!!! Ugh. Oh! And Happy Birthday, Tom!

Take care,

Sunday, April 27, 2008

Nissen Surgery Tomorrow!

So, Harlie’s nissen surgery is tomorrow (Monday) (the one that will hopefully stop her vomiting). It is finally here. This is the first step for getting her trach out – so this is a biggie. Everything hinges on the success of this nissen!!! If the nissen is successful, then she has jaw reconstruction the first week of June. Then sometime in the fall, possible decann!!!! Wow!

I know she’s first case on Monday morning, but I don’t know how long the surgery will take. On top of doing the nissen procedure itself, he’s going to replace her current peg tube (feeding tube) with a mic-key button. If all goes well, he will be able to use the same site that her peg is in right now. Less scarring (would be nice) and less hospital time if that works out. If the site is preserved, then she should be in the hospital just one night. If not, then it could mean three nights in the hospital.

He’s going to do it laproscopically and will go in at 5 different places, I think he said. He is very considerate and is going to go in through her chest tube scars (from her heart surgeries) and belly button to try to minimize more scarring. My poor babe and all her many “tattoos” already. Although, I have to say, it looks as though her skin heals great. They all look as good as a scar can look in my opinion. (Yes, I try to find the positive in everything!)

This past week was fun for Harlie and I. Brandy was on vacation, so it was just me and Harlie each day. I can’t believe how much energy that girl has! Each day is a definite improvement from the last, which I think is absolutely incredible. Her energy level has gone crazy! I think she has inherited Tom’s intensive energy level. For those of you that know Tom, you know that he has some crazy energy and can accomplish more in a day than anyone else I know. Well, I can tell you for sure that Murphy did NOT get his energy. Murphy is much more laid back, like me. Ahhhh…. However, I am really starting to see his crazy energy in Harlie. Which is NUTS considering her heart AND lung defects!

We had speech therapy on Thursday and poor Beth could not get anything done with Harlie. Harlie went from toy to toy faster than I have ever seen. She was all over the place! Beth and I were amazed. Beth also said that when that trach comes out and we start working on her speech, she really has her work cut out for her. She said that she suspects Harlie will have a lot to say! She also made a really going point about Harlie’s “new found” energy. She said that Harlie has probably always had that energy level, we just couldn’t see it because she was using it to heal and get better. Now that she’s in her best health EVER, it is starting to show. This certainly explains her lack of naps. It really amazes me how someone who should be more tired than usual because of her heart and lung function – can go without a nap as often as she does. It really is hit or miss if she’ll actually fall asleep. Many days she will just sit in her crib and play and never fall asleep. I just don’t get it. I will say that when she naps – she NAPS! If she falls asleep, she will sleep 3+ hours. And many times we have to go wake her up! I can’t remember Murphy ever not taking a nap because he wouldn’t go to sleep. Or, me ever having to wake him up from one!!! Funny how incredibly different they are.

So, I worked this weekend. And Tom had the kids to himself. He said she did not nap. Murphy did, of course. She just would not go to sleep. So he brought her back downstairs and went on about the day. Well, at about 4:30 she crashed on the living room floor. She’s something.

Well, I will update the site as I can tomorrow to let you know how the surgery went. Please keep your fingers crossed for us that the surgeon will be able to preserve her current feeding tube site and that this surgery is a success.

As always, thank you for your support!

Take care,

P.S. - The site is working on the photo viewing problem and said they should have everything working by Wednesday. So, it's not your computer.

Tuesday, April 22, 2008

She Grew!

This morning we had our weekly occupational therapy (feeding). The past few months have been going really well. She’s very willing to participate and seems to really enjoy herself. We believe that she has even managed to swallow a few small sips of watered down baby food (sounds yummy, doesn’t it?). But, today was terrible. She did NOT want to participate and made her feelings very clear. Luckily Allison and I agreed that we did not want to force her. We want “mealtimes” to be a pleasant experience. And we only have a few more sessions before the jaw reconstruction, so there’s really no need to push at this point. So, we called it a day with Harlie and that gave Allison and I some time to go over questions for Dr. Magee (the plastic surgeon). The jaw surgery greatly impacts feeding issues, so it was very helpful to hear her questions.

Then after that appointment we rushed down to MCV for her appointment with her pulmonologist and nutritionist. That went really well. It was the first time they had seen her walk. They were all thrilled to see how far she’s come in just a few short months. They always do vitals and weigh and measure her. Her sats were 91 while we were there (which is incredible). The great news is that, for the first time ever, she is FINALLY on the growth chart for length (5th percentile)!!! She is finally 30” tall! Woohoo! She will be 19 months old in 3 days. She said that the walking is doing the trick – your bones need the stimulation of walking to grow well.

Unfortunately, she lost a pound. She was close to 22 pounds at one point, but she is back down to 20 pounds now (and now off the growth chart). But, considering all the walking she’s been doing, and her increased activity level overall, that’s no surprise. We just have to figure out a way to get more calories in her. That is going to prove challenging in the next few months. But, she said that Harlie is still well-nourished, so not to worry.

I did get some conflicting information about possible decannulation (getting the trach out) in the fall. The general practice here is to not decann a child between October and April. In the month after decann, if a child gets a cold it could be very bad and it could mean being re-trached. Harlie’s ENT said he does it anytime of the year. Now the dilemma will be who to put in charge of her decann – her pulmonologist here or her ENT in DC? But, I will cross that bridge later. The first step is to get her through this nissen surgery. If it isn’t successful, her plastic surgeon will not do her jaw reconstruction. So, we’ll just cross each hurdle, one at a time and worry about the other things when they get here.

Her pulmonologist just raved about how well Harlie is doing. She said she looks and sounds the best she has ever been, which I completely agree. In every way she seems to be progressing. She’s even starting to sign more accurately. And one of the best things about her progress is that her cough is stronger and she has been able to clear most of her secretions on her own – without the help of the suction machine. This has been absolutely wonderful. We went from suctioning all the time, to just several times A DAY!!! Wow! I am thrilled with this progress. It means that she is stronger, her lungs are growing and it makes our day so much more enjoyable.

So, that’s about it. Thanks for checking in!

Take care,

Thursday, April 3, 2008

Ukrop's 10k info and other stuff

Well, now that Saturday’s Ukrop’s 10K is fast approaching – yes, THIS Saturday – I thought I would talk about it a little.

First, I would like to say that I have always been uncomfortable talking about our money situation – much less asking for donations, etc. to The Harlie Fund. So, when Maria Candler with James River Grounds Management, Co. approached us with her fundraising idea to incorporate the Ukrop’s 10K into a fundraiser for Harlie, we were very overwhelmed, and perhaps a little quiet. (See 02/06/08 entry if you don't know what I'm talking about).

Well, we are getting excited now. Tom’s been training and reached his weight goal of 175 today (his goal was to be 175 by race day). YAY for him! Although, I don’t think he should lose one more pound, or he’ll be too skinny in my opinion. All my family and friends have gathered around to support us. And, even people we don’t know have been out raising funds and/or will be running and cheering on Saturday. I cannot begin to express what it feels like to know that so many people (friends, family and especially those we don’t even know) have been touched by Harlie’s story and have gone out of their way to help her – and us. Seriously, there simply are no words.

There are so many times when I could be angry at what has happened to my sweet Harlie and all the many pains and battles she has and will continue to endure in her lifetime. But, it seems that the good in the people around us takes over and makes me so thankful. I really don’t have the time, nor the desire to be angry. My faith in humanity is restored on a regular basis. 

I’ll give you just a few examples. 

Maria Candler for one (that’s easy) for organizing this whole event. Then, a girl I met just a few months ago, Kim. I’ve mentioned her a few times. Her daughter is Sadie, and has a CHD, too. Well, she e-mailed me the other day and said that a friend of hers in California was having a neighborhood fundraiser for Harlie. Huh? What? Are you kidding me? It is times like these that I know this world is full of good people. And that’s what makes me not so afraid of Harlie’s future. She will touch good people for the rest of her life and she will be fine.

Enough of the mushy stuff (for now). Now, for the race details. We are going to meet around Birch and West Franklin (Monument turns into W. Franklin at Stuart Circle) sometime around 8am. If you are running or walking, please look for us around this area (it is about 1/3 mile from the finish). If we get there early enough, hopefully our group can be pretty big and obvious. Parking is, of course, on your own, wherever you can find a spot. As the runners finish the race, we’ll head on down to the finish at Monroe Park. They will have letters posted so you can meet your family and friends according to the participant’s last name at the end. I was thinking we could all meet under the Z to make it easy for all of us. Then at 11:30, we will meet Maria and the James River Grounds group, at the fountain in Monroe Park.

I know it will probably rain, but we’ll be there regardless. I am really looking forward to it. Good luck to the runners/walkers and know that you will have a good cheering crowd to support you.

Now on to other stuff: Our big news of the day is that Harlie got her new walker today! Traci (her physical therapist) surprised me with it today when she came for PT. It was delivered just a few minutes after Traci got here. But they delivered the wrong thing. Then the guy was nice enough to run over and get the right one and bring it right back over. It swivels VERY easily. So, her biggest challenge won’t be making it turn, it will making it stay straight! As soon as she started walking with it, she was going in circles. Hopefully it won’t take her long at all to get the hang of it.

We also got her Go Talk communication device today. Our speech therapist (Beth) came for ST today and brought me the photo pages that I made. We don’t have a color printer, so I made the pages with our photos and then e-mailed them to her and she printed them out for me.

I will take some photos of the Go Talk so you can see what I mean. It just might take me a couple of days to do it. I did get some video of Beth teaching Harlie how to use it. That is not an easy task, let me tell you. Repetition is key, and that can be very draining – for all involved. But, it seems that she catches on pretty quickly. It was very nice to hear Beth say that she thinks Harlie is smart. They’ve told me all along that her intelligence shouldn’t be affected by her medical issues. But, sometimes it is hard to tell when they are behind developmentally.

Tomorrow we are off to Children’s in DC for an ENT appointment. Well, that’s it for tonight.

Thanks for checking in!

Take care,

Hardware Removal Day

I'll talk about pre-op day first, then I'll blog about today... Yesterday we did the whole drive through testing thing.  That wa...