Post-op Day 4

Yesterday, (post-op day 3) was rough. I had not slept at all the previous night and being tired on top of being sad is not a good combination. And I just couldn't write.

Although I had been really good and was keeping myself together fine, until the anesthesiologist who intubated Harlie for the surgery came to visit. She just has that personality and really sweet face that makes you comfortable. Plus, Harlie's nurse was so sweet and compassionate, too. As the three of us were talking, I asked her how long it took to intubate her under perfect conditions (she was well and breathing on her own). She said minutes, and that she got lucky.  Somehow the realization that she is going to remain trached for the foreseeable future hit me, and I started to cry. Once I started, I had a very hard time stopping. Then Harlie's pediatrician called her nurse to check on her. Seriously, how sweet is that? Her nurse gave me the phone so I could talk to her. Once I heard Dr. Sutherland's voice, which is also very sweet, I started to cry again. I couldn't talk to my mom, my sister, or any of my friends because I knew I would cry. And I had to keep it together as much as I could.

There is so much going on here, medically, and it is hard to be able to comfort myself thinking/hoping that this trach is temporary. The fact is that no one knows. It's way too early to tell. Let me try to explain...

The ENT who trached her and Dr. Padwa said that she should never be intubated again. They felt that she would need to be trached preemptively for every surgery from here on out.

I think I might have mentioned in a previous post that Dr. Resnick had to remove one centimeter of bone from her jaw.  My first thought was is that going to affect her airway. We worked so hard to make that jaw longer, and now it will be one centimeter shorter. I remember talking about adding millimeters. And one centimeter means taking away ten millimeters! That's a lot!!  Anyway, he said that it was up near her ear, so he didn't feel it would affect her airway.

Also, she's had a lot of lung issues and pneumonia. And I've never seen her go downhill so fast. Plus, I noticed that when they look at her chest xrays, no one has a major reaction. What I'm trying to say is that what we know about her lungs didn't match how bad she was doing (in my opinion). So, I can't help but be fearful that there is/are additional factors contributing to her decompensation.

So I asked Dr. Padwa about the centimeter Dr. Resnick removed. She apparently went home and thought about it. Because when she came to visit last night, she said she always listens to moms, because they are usually right. And then she said that maybe it did affect her airway negatively. Maybe her clearance was smaller than we knew. And this just tipped her over.

So, to summarize, this is what we know:

1. She has a very small airway as it is. She also has congenital cervical spine fusion. This makes it impossible for them to put her head back enough to get a better angle when trying to intubate.

2. Her airway itself is irritated, swollen and bloody from the intubation tube, jaw surgery and tooth extraction.

3. Her lungs have atelectasis (collapsed) and most likely she aspirated blood.

4. The centimeter removed may or may not have affected her airway structure (meaning the jaw bone, not the trachea itself) causing an upper airway obstruction (like she had for most of her life), causing her to struggle to breathe.

So, we have to wait until we can start to eliminate some of these issues to see where she settles. The problem is that if I think about #4, I know what that means. It means more jaw surgery before decannulation. And it makes me think about how she's going to talk. We don't know yet what kind of airway she has. Air has to be able to get past the trach, go through her vocal cords and out her mouth for her to be able to talk. An upper airway obstruction makes that much more difficult, if not impossible. We have to be patient till we find out the answers to so many very important questions. And that's so damn hard.

As to how she's doing now, she is under general anesthesia so she can't move on her own.

They gave her a PICC line yesterday. She only had one IV, and since she MUST get sedation meds, it was too risky to not have another access point (what if they lost her IV and they couldn't give her meds?).

Her lungs are still hurting, but what they would normally do to help the progress and get rid of secretions (chest pt, her coughing) they can't do because of her freshly placed trach. So, she just has to stay on course with antibiotics, oxygen and ventilation until her first trach change.

Her first trach change is Wednesday, I believe. After she gets that change, they will let her wake up.

She spiked a fever today, so they added an additional antibiotic.

They have not been able to restart her feeds. Her body just isn't ready for that. It's just so crazy because she has had virtually nothing since Monday night.

Since she is under, plastics is stretching her jaw for us. They are using a clamp that they use in the operating room. They put it in and stretch her jaw for 15 minutes, twice a day. They are giving her a bolus pain med prior to, because her blood pressure indicated that she was in pain when they did it the first time.

During the first time, they noticed that she has a loose tooth that bleeds when it is touched on the bottom of her mouth. Its a permanent tooth and I'm guessing its unstable because they removed the one next to it. Regardless, I almost lost my stuff when I found out. It is one of the bottom four teeth that the surgeon said didn't have a lot of bone under them. I just can't. It was about to be the straw that broke my back. But when plastics came by I asked him about it and he said it would heal and likely be fine. They are trying not to put the clamp on that tooth. Ugh. This whole thing is killing me.

I don't think I mentioned that Tom flew in late last night. We spent the morning at the hospital and left early afternoon. Maggie's boyfriend (Noah) met us out and the four of us hung out and walked around. Then we got dinner.

After Tom and I got back to the hotel, I called to check on Harlie. The nurse said Harlie had a busy evening and she was about to call me. What?!

Her blood pressures are just too low. They started dopamine, but apparently that's not working for her, so they are going to start epi or something. She can't be moved because her blood pressures drop. She spiked another fever. Her stomach is not doing well, and a lot of blood and stuff are still venting out of her gtube, so giving her Tylenol isn't working. So they are trying a cooling blanket.

She said a bunch of other medical stuff, but I can't remember it all enough to explain it.

The fact is that she is really struggling and my stomach hurts thinking about it. Having a medically fragile child gives you an introduction to a whole new world that most never even know exists. I have met so many moms who have children with rare, complicated medical conditions. I've watched so many of them suffer through surgeries, hospitalizations and many sicknesses. And I've watched many lose their children. Its awful. Its heartbreaking. But it happens.

So I KNOW there are NO guarantees. I know that every time we take her into surgery. I HOPE more than anything that she will bounce back. But I don't KNOW. So, I'm scared. She's very sick and she has a lot going on. None of this was expected. And I'm having a hard time with it all. And I miss HER.

Look at her just a few weeks ago.

And this is her now.

Hopefully they can get on top of that fever and she will settle tonight. I'm sorry this can't be more positive. I'm looking for it, I promise.  We just aren't there right now.

Thank you so much for the love and support. I know this isn't easy for you, either.

xo,
Christy