Hi. The past few days have been okay, I guess. Well, to be honest, Harlie is pretty miserable. We aren't exactly happy, either.
Surgery Day/Post-Op Day 1
Medically speaking, her blood pressures were pretty low for a day or so, so they gave her lots of fluids through her IV. This is tricky with her Fontan circulation (her heart and lungs don't do well dehydrated, or with too much fluid). So, it is a balancing act for sure. She pretty much slept for most of the day and was still asleep when we left for the rest of the night. She spent the first night in the CICU. Before I went to sleep I called her nurse to check on her. She told me that Harlie told her she had to go potty and some other things she needed, but I can't remember what they were now. Oh, she said that Harlie asked where Mom and Dad were and she told her that we went to go eat dinner. Then she told me that she got upset. Ugh, break my heart. As I was listening to her nurse tell me all that I was a little surprised - there is no way Harlie is talking clearly after that jaw surgery. So, I asked her how Harlie communicated all that to her. She said that she typed it into her phone so her nurse could read it. Wow! I am so impressed. We have not communicated like that at all. In fact, she was signing to us (which we are way more rusty than she is since we haven't used sign language to communicate to her in YEARS). I don't know how she remembers so much. She really is so smart and resourceful!
In the CICU, they have quiet time during shift change and do not want parents coming or going between 6:30 - 7:30. So, we arrived just after 7:30am on Wednesday morning.
Harlie was awake and the first thing she signed to me was, "I am mad at you." Darn it. I know, I'm her mom, and I'm the one that gets it the worst. I guess she has to put her anger somewhere - and I'm a safe place to put it. She knows I'm going to love her anyway. She typed in her phone "I can't talk" and I told her that we knew, but that she would be able to talk soon.
They rounded on her shortly after that. While the doc was giving the run down on her, I heard him say, "she has a 4.5 bivona, cuffed trach" and he continued on with her laundry list of all her devices and major health issues/surgeries. It is "funny" how after I don't hear it for a while and then hear it all at once it really strikes me as unbelievable. I mean, seriously, how the fuck does our little girl have this kind of medical history? It is unreal.
Anyway, after they were done doing their thing, I said, "Did you say she has a 4.5 - CUFFED trach in right now"? He said yes. Well, no wonder she can't talk!!! So, I told him that she is supposed to have a 5.0 ped Shiley - UNcuffed trach. The cuff is a balloon that they fill with water to fill in the gap between the trach cannula (the part of the trach tube that goes into her trachea) and her trachea. Typically, they put a cuffed trach in when she is on a ventilator so there are no leaks of air around the cannula and they can better control pressures while she's under anesthesia. If there is no air leaking around the trach, air cannot pass through the vocal cords, thus you cannot make any sound.
So, they were like, oh, well, yeah, let's get that changed then! I wanted to say, you're welcome, Harlie, but didn't. She would not get it.
Right after that, plastics came by to change her dressing. This is when things took a turn - in my emotional well being, I mean. Ugh. I have blocked so much out. Having to hold her and try to comfort her/calm her down during dressing changes is so hard. Plus, her surgeon said that in the past he would put dissolvable stitches under the skin and glue on top of the skin. But, he couldn't do that this time. Her skin is too scarred and tough now, so he had to use regular sutures that do not dissolve and no glue. This also means we will have to remove her sutures after we are home. She has two incisions - one in front of her left ear and another longer one in her neck, just under her jaw line. That second one is under her trach tie - which makes caring for it way more difficult and probably more painful for Harlie. It also means that during dressing changes, her trach is not secure, which just makes things more tricky. Anyway, that incision is pretty gnarly and in the past, I've been "okay" with her incisions. But, for some reason, this one got to me.
I changed her trach after they put a new dressing on and I do think she was more comfortable with her regular trach in place. Plastics told me that they had to stitch her trach in place during surgery (well, she couldn't have her trach ties in the way of the incision of course) but that they took the stitches out. But, the wound from where the stitches were is another area of discomfort that requires some post-op care. Her skin is just really unforgiving at this point. It has been through way too much.
During all that care - she desatted pretty bad (she turned visibly blue). We had to turn the oxygen up and hold it in front of her. There was four to five of us all busy doing something (holding her hands, holding her trach, doing the dressing, holding the oxygen and getting supplies ready).
Desatting like that got me wondering if she was a little fluid overloaded. She did look puffy to me (not just her face, but her arms and legs, too). I tried to tell myself it was too early to worry about that, but, you know how that goes. Obviously, I don't want her lungs to get wet (then develop pneumonia, which has happened many times). We have to be home before Tuesday (for Murphy's graduation). Even though no one is talking discharge yet - I was thinking about what will be involved in getting her home. We have an oxygen concentrator - but if she ends up needing supplemental oxygen all the time (not just during the flight) it won't be enough. So, we would have to have the hospital help us get a better concentrator. We've started looking at flights, but they leave Boston at 6am (no way we can make that happen) or 9pm. I mean, what the hell? And they are so expensive! Tom did find a flight into DC, that is at a more reasonable time (2:30pm), but we would have to rent a car and drive from there. Or, of course, we might have to rent a car from here and drive home, which we really would rather not do. Caregiving post-op while traveling is a nightmare.
We are really feeling our ages right about now. It is getting harder and harder on us to keep up this pace. We have been doing this for almost 20 years now! How is that even possible? We were in our early 30s when we started this life! We are definitely feeling the toll. It doesn't help that we are sitting in a hospital room all day. Being present and focused on Harlie's care while in the hospital takes ALL of my focus. My world gets so small and it feels like there is nothing outside of this room. I feel terrible for the boys, who I realized I had not spoken to since Sunday night. Tom has been talking to them, I just haven't. So, while at dinner later, we called Cooper. He couldn't chat because he was at work. So was Murphy. But, they said that all is well at home, so that's good.
Anyway, the CICU team said she was ready to go to the step down unit so we waited all day for that to happen.
The nurse we had in the step down unit was a nurse we've had before (and liked) and we remembered each other. A cardiology fellow came in to introduce himself and ask me a few questions about Harlie. I love it when people are curious and ask me questions. I have been surprised at the lack of curiosity of people, really. I mean, maybe people are afraid they are going to offend me or something - but how can you learn if you don't ask questions? And by the way, what mom doesn't want to talk about their child? Anyway, my cliff note interpretation is that he was confused at our many locations of medical care. So, I explained how and why that happened and he was like, oh, that makes sense now. And I felt seen and heard and respected all at the same time. So, good job to him! He also told us that her heart is so interesting and he drew it up for some students earlier.
We stayed until the night nurse got here and we went over everything with her. Harlie still can't talk (another sign that she could have swelling everywhere, including her airway), so she's been using her phone to type what she wants to say. Then we left and walked back towards our room. We went to a restaurant next door to the Bon (where our room is) and had dinner and wine. We shared an appetizer and one entree.
I woke up at 12:30am really not feeling good. Like I was afraid I was going to be sick. I asked Tom if he felt sick, since we ate the same thing, but he said he felt fine. I was really uncomfortable, like hot, cold, didn't want to lay down, didn't want to sit up. I don't know if this sounds crazy, but looking back, I think I was dreaming/processing the day and that it made me physically ill. I kept seeing her incision in my mind and it was making me hurt - like my stomach just felt so upset. There are a couple of tricks I've learned to help me not worry when I wake up in the middle of the night - but it was very hard to stay focused on them, like the worst it has been, probably. It was so upsetting that I thought, what if something has happened at the hospital and I am feeling it? Then I told myself to stop - they would've called me if anything happened. I eventually fell back to sleep. But, needless to say, it was not a good night.
We woke up early and walked to the hospital. I always call the nurse early, before she leaves from her night shift, so I can hear how Harlie's night was. She said that she went to sleep around 9pm and slept soundly all night long. So, that's great! She was still sleeping when we arrived.
Post-Op Day 2
Today has been okay. Her swelling is definitely worse, no surprise there. But, her lungs sound clear and they have been able to wean her oxygen down some, so that's a good sign. We got her up and changed her clothes, I brushed her hair and re-braided it, she took a walk around the unit and now she is in a chair instead of the bed.
Plastics came by and said he could remove the dressing in front of her ear. But, she kept swatting him away. He told me I could do it any time today. So, after he left Tom and I talked to her about it. She did not want us to do it, either, but we got it done. It looks good. I am not going to do anything with the neck incision today.
They just gave her some Lasix (a diuretic) to help her get rid of some of those fluids. She did get up and go to the bathroom and during that little walk/effort/time off the oxygen, her sats went to 74 (she's normally in the mid 80s) so that's not too horrible. But, I'd certainly feel better if she didn't dip as low when we leave. The case manager is working on getting us a better oxygen concentrator, but that is more complicated than I realized. Especially on a Thursday afternoon. As of now, we are looking towards a Saturday discharge (which would mean we would need the concentrator tomorrow).
On Saturday, there is a 2:30pm flight to DC that we could take. That is way better than 6am or 9pm flights to Richmond. Although, we have to rent a car and drive home from DC, but still I think that will be easier on Harlie than getting home well after 11pm.
During her surgery, they gave her an arterial line. They took it out when she left the CICU. Today that wrist is bruised (which isn't surprising since she bruises so easily) and looks swollen. So, they are keeping an eye on that.
She hasn't wanted to eat at all so far. Drinking Pediasure is not an option right now. So, I'm tubing it. But, she will only let me give her like two ounces at a time. After I asked her if she was feeling hungry, she typed this:
How freaking cute is her Google search? Clearly, her belly isn't feeling great, so I'm just going to stick with smaller boluses until she feels better.
She really seems worn out, mentally. She asked me today why she is the only one in our family who isn't normal. She said she wants to eat food like us and play sports. It just kills me. After all these years - 19 of them - it is not any easier and we are not less sad about the cards she was dealt or the losses she experiences. Tom saw this the other day and showed it to me:
The biggest illusion you live with is that the future can somehow bring you peace. But peace is not in the future - its in becoming comfortable with the chaos of the present.
The future will not bring us what we want. There will be no cure. There will never be freedom from her medical challenges. She will never chew a cookie or a piece of cake or eat a cheeseburger. She will never swim or play a sport. How do you comfort your child who feels sad about all that? That is big stuff! I just told her that I was sorry. That I don't know why. All we can do is make the best out of what we were given. But, it is okay to feel sad about it. So, we can feel sad about it together. I remember when I first started blogging, shortly after she was born. During that time I was trying to be positive because well, maybe I had to be for myself - but I also felt like my Mom needed to hear something positive, that the rest of my family needed to hear it and my friends needed to hear it. I mean, who wants to hear doom and gloom all day? No one. I mean, I certainly don't want us to live doom and gloom, either. But, the reality is that I don't have the hope I used to have. So, I'm just being more honest about it.
As I said earlier, it is hard to think of our normal life when we are in this hospital room. Once we get her home and she recovers from this surgery, she will perk up. We all will. The dogs will help. They always cheer us up. And our regular life will resume and she will be better. And we will focus on being comfortable in the chaos of the present.
At lunch today Tom realized the Red Sox are playing at home tonight (we are literally staying across the street from Fenway Park). On a whim, he asked Family Services if they had any tickets and guess what, they had two tickets to give us. Right place, right time I guess. So hopefully, if all goes well, we will head over there tonight.
I'm going to wrap this up for now. Hopefully, tomorrow will be a better day and we can purchase those plane tickets.
Thank you for the love!
Christy xo
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