Jaw Surgery Info...

Wow, does it stink to not have wireless in the hospital!!! All my thoughts are stuck in my head and now there's just not enough time to write about everything.

Yesterday was agony, as was expected. We were the second family to arrive at day surgery, shortly before 5:30am. They weren't even allowing people up the elevator yet. So, when they let us in we were the second to sign in. We were the only family who waited in the waiting room ALL day. They called every hour during the surgery. I have to say that I liked some aspects of CHKD. Definitely not as high-tech as others (no pager system, no wireless, etc.) but more personable I think.

Surprisingly, I felt very comfortable with anesthesia (one of my greatest worries considering her heart issues). The doctor was awesome and I liked him a lot. One of the first things he said was that Harlie had been on his mind all weekend. And he said he meant it. He knew her history by heart, and only had a few questions. Then, after she had been in for more than an hour, he came out to the waiting room to tell us what was going on and how she was doing. He said the funniest thing. He said that he wanted to come out and talk to us because he knew we would not be satisfied with what they normally say when they call. He said that he overhears the nurse call the parents and say, "well, the surgeon is doing the surgery...". Gee, thanks for the great info... Well, we certainly appreciated his humor, and his thoughtfulness.

We've never had the anesthesia doc come out and talk to us before. But I know a lot more now about where they need to put the lines and I try to spare Harlie a bit of bruising by telling them which places simply don't work anymore. They never listen and each one thinks "they" have the skills to do it. I'm always right. And I don't mean that to brag. So, he came out to tell me about that stuff, which we appreciated a lot.

Then the general surgeon who put in all her lines came out to tell us more about that. Her femoral arteries in her legs (the ones they like the best) are toast. They haven’t worked for a year now (since her 2nd heart cath last June). Which I told them. Yet, they keep trying… So, they had to go for her subclavian artery (below her collar bone). She has another arterial line in her wrist and a regular IV in her foot. Hopefully the subclavian one will come out today. That was how they gave her blood during the surgery. I think the surgeon said they had to give her a liter and a half (but don’t hold me to that). We were very appreciative that a general surgeon put in her lines. AND came out to tell us how it went. So, overall, we were really impressed with CHKD.

There were two things I didn’t like.

One was that neither the neurosurgeon, nor Dr. Magee came out to talk to us after the surgery. So far we have always talked to the surgeon afterwards. I do know that Dr. Magee had a 14-hour surgery scheduled AFTER Harlie’s (he’s crazy and I see that his energy has not decreased since I left Operation Smile 11 years ago!). So, he had to run into that one. Nuts. I suppose that’s the same deal with the neurosurgeon – but still, Harlie’s our daughter and he just cut open her head and exposed her brain, and it would be nice to know it went perfectly. Us picky parents…

The second was that we sat there, all day, receiving hourly phone calls letting us know that things were still going okay. At 2:15pm she called to say they were “wrapping things up” and surgeon would be out shortly. TWO hours later, we are still sitting there. I knew that we had been forgotten, yet AGAIN. All day we sat there watching the system work for every other parent! Ugh. This is the 3rd time that communication has broken down after a surgery. So, I asked the lady that was there in the waiting room to check, but she said they always say that and it always takes longer than we think. I asked her to call back there, but she didn’t. I just thought it was strange that we went all day getting hourly updates and then two hours with nothing – after saying it was almost over. Luckily, at 4:15 the speech pathologist (Beth) who works in Dr. Magee’s office came by to ask us what we had heard (nothing) and she took us to find someone.

We found Karen, the nurse coordinator for Dr. Magee and she found Dr. Rosenblum (Dr. Magee’s partner who assisted with Harlie’s surgery) and got him to come out and talk to us.

He said she did great and she looks really different. Both Beth and Karen had already been to see her in the PICU and said the same thing. I asked “different bad, or different good”? They all said “different good”. Dr. Rosenblum said that she will have a major underbite for a while. They have to bring her bottom jaw forward and up past her top teeth to get it to set in place and after the wires are gone and she grows a bit, it will recede and look more normal. Karen told us it could take a few months after the wires come out – it is different for each child. He also said that she will probably be in the PICU for at least 2 nights. After that we’ll just have to see how she does.

Side note, Beth was great and had already found us earlier in the day to tell us that she spoke at a conference on Monday and spoke about Harlie. She said that she told them about how all the odds were against her and after a long hard 20 months, she is signing over 30 words and doing great. Then she said she would watch some of Harlie’s surgery.

I don’t know if you remember me mentioning that her surgery was scheduled during a program called “Physicians Training Program”. It is an annual event with Operation Smile where they bring docs from all over the world to the US for 2 weeks or so to learn about craniofacial procedures and stuff. Back when I worked for OpSmile, I was one of the ones who “chaperoned” them around for some of the fun stuff – like Harbor Fest, Busch Gardens and their favorite - a trip to Wal-mart (yes, a highlight for them). It was a lot of fun because most of them are from developing countries where they have very little, if not nothing.

Anyway, they video the surgeries and show them on a big screen in an auditorium at the hospital for all the docs. Beth said that she watched some of it and that Harlie did great. I have to admit, that I asked the neurosurgeon at our visit two weeks ago if they let parents watch. He said, without any hesitation, “absolutely not”. I know, sounds morbid and sick, but, waiting for hours yesterday, I wanted to go find that auditorium, just so I would KNOW what was going on. The waiting is just horrendous! But, obviously, I did no such thing.

So, back to Harlie, after talking with Dr. Rosenblum, Beth walked us to the PICU to go see her. The anticipation was killing me. Knowing that everyone else knew what my little girl looked like – and I, just – HER MOTHER – did not, was agony. Well, even though I tried to be prepared, the emotions of the day, and seeing her like that, and looking “different” got the best of me and I could not help but just cry. I haven’t done that in a long time. I think they all felt sorry for me, but I told them with this situation AND the pregnancy hormones, what could I do?

She has kissable cheeks now! Well, at least it looks like she’ll have them, which is wonderful. As you can see from the pics Tom uploaded last night in our zombie like state, she is completely bandaged up. And there is a lot of blood. There was blood after her heart surgery – but it was all contained in tubes. To see it coming out of her mouth and out of her trach is very unsettling.

Because they had to harvest the bone from her skull, they had to cut the dura (the covering of the brain) – I think – to relieve pressure and it is bleeding and draining down into her throat – causing her to cough it up and out her trach. But since she has a leak around her trach, it comes out the stoma, too, so it is all around her trach. They are suctioning out what they can, but there’s only so much you can get to with her mouth being wired shut.

Her bottom lip is very swollen and now you can see her bottom teeth VERY clearly, which is weird. They all said that she will look worse today. I am trying to be prepared, but it is hard to prepare yourself for something you really can’t imagine. I mean, how do you picture your child looking different? I have tried, for months, to picture her with a chin, but it has been impossible. I loved her little face the way it was! Now it is gone. And there’s a new face that I still can’t see!!

I am so glad that Tom is able to be here today. It is so much better when we are together. But if she doesn’t get discharged tomorrow, then he will probably have to go back to work on Thursday. And then he will have to come back on Friday because hopefully that is the latest she will be here.

Well, I need to go. We aren’t allowed into the PICU until after 8:30am and we want to be there. I will try to write when we get back. We have decided to stay at our friend’s house instead of moving to the Ronald McDonald House. More comforting.

Thank you for all your messages and support. I know many of you don’t know what to say, but it is just nice to know that you care. This certainly is a huge hurdle for us. And hopefully a life-changing one – in a good way!

Take care,
Christy

Still in the hospital...

7:30am UPDATE

Well, the normal docs that know us rounded earlier and asked why she wasn't fed overnight. Ugh. The doc never showed up last night to talk to me. I will definitely have to take that to a higher level. Later.

Anyway, they said to start slow feeds, and milk of magnesia (finally!). I was very happy to hear they are going to try to help her instead of just standing around. I'll let you know how it goes.

6am UPDATE

Well, things didn’t improve over night. I suppose the positive is that things didn’t get worse, either. Although I find that hardly comforting at this point. I did manage to get a few hours of sleep. But was awakened before 4am to very bright lights and a lot of people around Harlie. They tried to start IV fluids since they don’t want anything else going in through her g-tube. Some say they hear no bowel sounds at all (which is not good) and some say they hear some faint ones. It is always very hard to tell what you’re listening to with her.

Anyway, the vein shut down, so now they have to find another one to start the IV fluids. I really can’t express just how difficult a task this is. They waited till she was asleep before surgery till they started one and still had to stick her multiple times. She came back with several bruises in both arms and legs. So, they tried again this morning, several different people, several different times each. Finally, the last one said, “no more torture”. So I guess they will try again in a few hours.

Her belly doesn’t seem to be getting worse, but if things don’t start moving the in right direction soon, I am going to really start to get worried. I think they are going to take some x-rays this morning to make sure there’s no obstruction. I keep on asking what we can do to help her, but the only thing they say is time. I will try to get her up and walking today to see if that helps at all.

12 MIDNIGHT UPDATE

I am so disappointed. Unfortunately, in the late afternoon, Harlie’s belly became distended (very bloated) and they wouldn’t let us take her home. Of course I find this out after we made arrangements to get Murphy taken care of and Tom dropped off at the hospital so we could all ride home together. So, at 8pm Tom and I had to go home, let me get an overnight bag and then I drove back to the hospital to spend the night. To make matters worse, they moved Harlie to the step down unit (which is a big room with a bunch of beds separated by curtains). Last year my older brother visited us when we were here and he said going from the PICU to the PCU was like going from a really nice hotel to sleeping at the bus station. That is so true. I will say that we got lucky and got the corner bed, so it has two walls AND a window.

So, her belly is distended because she had anesthesia, abdominal surgery (and they filled her belly with air), she’s been on strong pain meds, and the formula they have here doesn’t have fiber (like we have at home). All of those things have not helped her GI motility, AT ALL! So, now we wait until things start moving and her belly goes back to normal. They had worked her up to full feeds, but after her belly started looking bad, I asked them not to feed her the 5pm feeding. I just gave her water periodically and they tried some meds to see if they would help (they didn’t). All the docs agreed that we could start her night feeding at 9pm at one ounce per hour and I would bring my food from home so she would get the fiber. Now that she’s in the step down unit, they don’t want to give her anything at all. The orders are for her normal feeding of 48 mls an hour (which is a little more than an ounce), but the doc in charge (who isn’t here) said no, she can’t have anything. Ugh.

This is when hospital life outside an ICU is FRUSTRATING!!! It is now after 11pm and she’s had nothing but some water and meds since 1pm. The doc that’s making this decision isn’t here and hasn’t even seen Harlie. All the other docs that know her agreed that 30 mls an hour would be fine. But since this isn’t an ICU, the doc doesn’t have to be here. Of course I had to get assertive, so the nurse said that the doc will come and see me to talk about it. We’ll see how long it takes him to get here, if he ever does. So, it’s late, so I’m going to try to get some rest. They are now cleaning the bed space next door and causing all kinds of ruckus. Lovely. Hopefully things will change over night and we’ll be able to take her home in the morning.

Take care,
Christy