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,
Christy