I have lots to update regarding what's been going on this week, but it is late and I'm tired. :) I did want to log the videos I took today of Levi though as a benchmark of where we're at. In the last month he seems to have had a bit of a growth spurt and jump in progress! He is not saying "dada" regularly, but can with help. He is not saying his own version of "no" and many other words however, and really is using some key words to try and communicate. We are so proud of him! The second video was just to document what Levi is like "freestyle" communicating right now. He was pointing at something out the window and I thought it was a bird or plane, but I never did figure out what he was pointing at. :( I can't wait for the day when we are able to hear and understand all that he has in that sweet little head!!
Thursday, January 24, 2013
Monday, January 14, 2013
Talking and Healing
I went in for a post-op check up today, which was a few days early. I have been having quite a bit of new swelling and pain since Friday that had me concerned and I wanted to get it looked at. Good news! My doctor said that the scar and swelling is healing nicely, perfectly in fact. I was very glad to hear that. He said the swelling is from the filler he put in my cheek called Alloderm and that my body just takes some time getting used to the foreign material in it. I was relieved to hear that it wasn't fluid build up called a seroma as a thought it might be as that can take a while longer to recover from. I'm ready to be over this whole thing! He said that he was hoping that my paralysis would be better than it is right now (no improvement so far), but he tested all of my nerves during surgery and they responded, so he'd be shocked if the paralysis was permanent.
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| I took this picture in the hospital and sent it to my brother the day after surgery saying "Everything looks normal, right?" (Of course he said yes) I wasn't going to put it on here, but Brian and I still crack up at it, so I thought I'd share. Laughter is the best medicine, right? :) |
I go in for another check up in two weeks, so hopefully by then I'm getting some movement. My right eye doesn't close completely, which is annoying. I get soap in my eye every time I wash my face and it gets dry easily, but he wasn't concerned about this either and it should go away. I still have very low energy and am tired most of the day, but that is to be expected still even for the next few weeks. Please pray that I have the energy to keep up with my kids come Thursday when Brian's parents leave! I still will have my lifting restriction for a few more weeks, but I'm hoping to teach Levi how to climb in and out of the car seat by himself soon. Beyond that, I should be able to manage not lifting him during the day I hope.
Speaking of Levi, he has had a very good week of speech therapy, really impressing his therapist at UNMC with cooperating and even initiating some sounds. It is still difficult for him to get the sounds out right, but his initiating the speech is huge. Praise God for that!
Tuesday, January 8, 2013
Thankful.
Surgery was five days ago and I just now feel clear headed enough to post. Anesthesia with a side of shock has made me a bit foggy the past few days. I sort of remembered what has happened, but not very well, if that makes any sense. That said, I will recap what happened and where things are now.
Last Friday I got a call that the surgeon was running a bit ahead, so Brian and I went to the hospital around 9:45, checked in, and then ended up waiting anyway until around probably 10:45-11 or so for me to go back to pre-op. I changed, got an IV put in, answered which side of my face needed surgery, my name, and birth date about 10 times, and got the chance to talk to my doctor. He didn't really say anything new or notable to me, but I didn't think he had his game face on and felt good about that. :) Brian came in the room shortly after, followed by the anesthesiologist. He gave me something to "take the edge off" and I remember feeling that flow through my body. Brian asked him if he would be in the room the entire time during the surgery and he said yes. I asked him if he takes that time to play Sudoku on his phone during surgery and he laughed and said close, he looks at HuskerIllustrated.com. I was close. He also said he looks at my vitals monitor every 20 seconds though. Suuuuuuuure. ;) I don't remember anything after this until I woke up in the recovery room.
While I was in surgery, Brian and my mom got updates a couple of times from the nurses, basically saying everything was going great! (As if they would actually say anything else....?) The surgery took maybe a bit longer than three hours and Brian and my mom were able to meet with my doctor shortly after it was over. He said that the surgery took a little longer than expected because the tumor had a finger that went up in front of my ear that they hadn't seen. The tumor was also a bit larger than he had thought. He thought it had maybe been there a year and that it felt benign to him. He said he got a good clearance around it of tissue and put in some filler to the dent called Alloderm, I believe. He probably said more than that too, but I'm not sure what else and I hopefully will get more information from him when I meet with him next week.
About an hour after surgery, I was moved up to my room and they were able to come up and see me. The first thing I remember when I woke up is pain. My jaw was killing me and I just overall was in pain on the right side of my face. Morphine is completely worthless on me and they upped it for an hour probably and I was asking the whole time, can you just get me another drug please? Anything else? That took getting ahold of my doctor and then getting the drug brought up, so it took some time, I don't think I was pain free for a couple of hours after surgery. At that point I was doing OK for a little bit, a couple of hours maybe, then the nausea set in. I was extremely dizzy from the moment I woke up and tired, but the nausea hit it's peak around nine or so and then thankfully got much better after I got it out of my system. I slept pretty well that night, waking up every hour but able to go back to sleep pretty quickly. Saturday was pretty uneventful, although I was very weak and dizzy and needed to get my hydration up before I could leave around one or so. It was good to get home, but I definitely still felt like a hospital patient.
I came home with a drain tube, an ointment, eye drops, and a couple of bottles of pills. I have done OK since being home, but the pain has been more than I had anticipated and I also really hated to have the tube in and having to mess with that. The right side of my face near my ear and my neck was almost entirely numb until last night. I have just started getting feeling back, which feels funny. A bit like a foot waking up after it's asleep, just on a random and constant basis. Even now though, I still only have maybe 50% sensation? Maybe. That is normal though and the bottom half of my ear is completely numb and will probably remain that way forever. One thing I knew was possible, but hadn't anticipated happening is the paralysis or weakness I have above my right eye. It has bothered my eye a bit as my eyelid may not totally be closing while I sleep sometimes, hence the eye drops to help with that. My look of surprise looks more like an inquisitive look at the moment. This may take weeks to months to return, but they do think it will most likely. It isn't numb, just paralyzed. It's weird.
Last night I started having some issues with my drain leaking (sorry, I know it sounds gross) so today I went in to have it removed instead of tomorrow, which was great. They also told me then that the final pathology came back benign, so that is a huge relief!! I haven't talked much about it, but radiation would have been much worse than all I've been going through with this surgery, so I'm very thankful that the worst of it is over and I can just recover from all of this and move on.
Thank you so much to all of you have been praying, offering help, and thinking of us during this time. It was been a crazy and fast road and I was telling Brian today that I have really been so foggy and in shock and focusing on getting through this that I haven't been thinking to pray for myself, as odd as that sounds. It is a great feeling to know that people are interceding on my behalf. Brian's parents have been an absolute lifesaver being here as there is no way we could have handled this on our own. I am still at a place where I have little energy to get around the house and attempt to care for myself, let alone cook and care for the kids, so it is such a relief knowing that I don't have to worry about that. For those who have offered to help, Brian's parents leave next Thursday, so we may need a bit more help at that time and I will keep you informed. I will still not be able to lift more than 10 pounds, which means things are tricky with handling Levi, but I'm hoping to have a bit more energy to try and help with the kids and meals. We will keep you updated. Thank you once again for praying and praising God with us that we have made it through and that it's not cancer! I will update again next week once I meet with the surgeon.
Last Friday I got a call that the surgeon was running a bit ahead, so Brian and I went to the hospital around 9:45, checked in, and then ended up waiting anyway until around probably 10:45-11 or so for me to go back to pre-op. I changed, got an IV put in, answered which side of my face needed surgery, my name, and birth date about 10 times, and got the chance to talk to my doctor. He didn't really say anything new or notable to me, but I didn't think he had his game face on and felt good about that. :) Brian came in the room shortly after, followed by the anesthesiologist. He gave me something to "take the edge off" and I remember feeling that flow through my body. Brian asked him if he would be in the room the entire time during the surgery and he said yes. I asked him if he takes that time to play Sudoku on his phone during surgery and he laughed and said close, he looks at HuskerIllustrated.com. I was close. He also said he looks at my vitals monitor every 20 seconds though. Suuuuuuuure. ;) I don't remember anything after this until I woke up in the recovery room.
While I was in surgery, Brian and my mom got updates a couple of times from the nurses, basically saying everything was going great! (As if they would actually say anything else....?) The surgery took maybe a bit longer than three hours and Brian and my mom were able to meet with my doctor shortly after it was over. He said that the surgery took a little longer than expected because the tumor had a finger that went up in front of my ear that they hadn't seen. The tumor was also a bit larger than he had thought. He thought it had maybe been there a year and that it felt benign to him. He said he got a good clearance around it of tissue and put in some filler to the dent called Alloderm, I believe. He probably said more than that too, but I'm not sure what else and I hopefully will get more information from him when I meet with him next week.
About an hour after surgery, I was moved up to my room and they were able to come up and see me. The first thing I remember when I woke up is pain. My jaw was killing me and I just overall was in pain on the right side of my face. Morphine is completely worthless on me and they upped it for an hour probably and I was asking the whole time, can you just get me another drug please? Anything else? That took getting ahold of my doctor and then getting the drug brought up, so it took some time, I don't think I was pain free for a couple of hours after surgery. At that point I was doing OK for a little bit, a couple of hours maybe, then the nausea set in. I was extremely dizzy from the moment I woke up and tired, but the nausea hit it's peak around nine or so and then thankfully got much better after I got it out of my system. I slept pretty well that night, waking up every hour but able to go back to sleep pretty quickly. Saturday was pretty uneventful, although I was very weak and dizzy and needed to get my hydration up before I could leave around one or so. It was good to get home, but I definitely still felt like a hospital patient.
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| My new funny face. |
Last night I started having some issues with my drain leaking (sorry, I know it sounds gross) so today I went in to have it removed instead of tomorrow, which was great. They also told me then that the final pathology came back benign, so that is a huge relief!! I haven't talked much about it, but radiation would have been much worse than all I've been going through with this surgery, so I'm very thankful that the worst of it is over and I can just recover from all of this and move on.
Thank you so much to all of you have been praying, offering help, and thinking of us during this time. It was been a crazy and fast road and I was telling Brian today that I have really been so foggy and in shock and focusing on getting through this that I haven't been thinking to pray for myself, as odd as that sounds. It is a great feeling to know that people are interceding on my behalf. Brian's parents have been an absolute lifesaver being here as there is no way we could have handled this on our own. I am still at a place where I have little energy to get around the house and attempt to care for myself, let alone cook and care for the kids, so it is such a relief knowing that I don't have to worry about that. For those who have offered to help, Brian's parents leave next Thursday, so we may need a bit more help at that time and I will keep you informed. I will still not be able to lift more than 10 pounds, which means things are tricky with handling Levi, but I'm hoping to have a bit more energy to try and help with the kids and meals. We will keep you updated. Thank you once again for praying and praising God with us that we have made it through and that it's not cancer! I will update again next week once I meet with the surgeon.
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