Addy continues to look better and better every day! Here are a few pics from Tuesday (3 weeks +1 day post-op).
The cutie has sprung a couple of teeth in the past couple weeks, as you can see in this last pic! :-)
Monday, December 13, 2010
Sunday, December 12, 2010
Saturday, December 11, 2010
So... I apologize to those of you who have been looking for an update since my last one. I guess this is what happens when I get back home to my two other young children with the one who is still recovering from surgery: I no longer have any time to update. :-)
Jeremy came and picked us up at the hospital on Thursday morning (Dec. 2). Addy's swelling went down quite considerably overnight, so her eyes were about half-open again by the time we left the hospital. Her older sisters were excited to see her again, and I'm sure Addy was glad to get away from that place with all the ladies who come in and wake you up and poke you with various things. ;-) (Not that I'm complaining... I know they're just doing their jobs.)
Addy was a little more quiet and clingy than usual for the first few days after we brought her home, but other than that, she went pretty much back to normal very quickly. I was expecting her sleeping schedule to get all messed up, but she actually went right back to her old routine! Her swelling came down very quickly, and by about day 6 after surgery, you could barely even see any swelling. So pretty much the only difference with the home recovery was having to put antibiotic ointment on her incision and hold her more than usual to keep her happy and safe. Never easy to alter a routine, but a lot better than I expected!
At this point, nearly 2 weeks out from surgery, I'd say Addy is just about back to normal in every way except that her incision is not totally healed up yet. (I assume that will probably take a couple more weeks.) But she is her usual cheerful, wanting-to-be-held-all-the-time, stinkery, cute self again. She is back to her two favorite games -- peek-a-boo and rubbing her hands all over your face ;-) -- and has recently added a new one: dancing. (She wiggles her little head and body back and forth in a playful, dancing manner... SO cute!!)
We saw Dr. Marcus on Wednesday (the 10th) for a follow-up. Apparently he wasn't informed that we were showing up that day, but he passed us in the hallway and basically gave us our follow-up right there! Ha! He seemed pleasantly surprised by how good she looked and how much the swelling had gone down already. (I had rigged up an inclined bed like the one in the hospital using her pack-and-play -- a hint I'd seen on craniokids -- and I think that did help with the swelling.) He said that everything looked great and even went so far as to say, "Did I even do surgery on her?"
One somewhat discouraging piece of news came a couple days before that, though, when we went to see her ophthalmologist at 1 week post-op. (That was probably a bit early, but we were going out of town soon, so I wanted to get it done so I'd know whether we should keep patching her eye, get her some glasses, etc.) The good news is that the surgery did not change anything for the worse. The not-so-good news is that it didn't help anything, either. (It usually doesn't.) The worse than that news is that it sounds like she probably WILL need eye muscle surgery after all... or at least, that's what the doctor said on that visit. Dr. Marcus thought that she may have been speaking a little too soon to be sure, since there was probably still some swelling and settling of the surgery to finish before they could make calls like that. The eye doctor herself said something similar, but more to the effect that we would wait and see for a few months, but that she thought surgery would probably have to happen.
I am personally a little skeptical of this. One encouraging thing is that we found that Addy is using both eyes equally and can see just about as well with each one (other than the astigmatism in her left eye). This is opposed to what she had seen at Addy's previous visit, where she was showing a definite preference for using her right eye and letting the left one drift. We think this is probably a result of the patching.
With that in mind, I have noticed that Addy's left eye definitely does not seem to be drifting as much. But the doctor still thought that her eyes were not completely aligned. This is where I am skeptical. There is a good portion of the time where her eyes are slightly off, but I believe that she CAN align her eye correctly when she is really trying. It is just easier at this point to be a little lazy with those muscles, especially when she is tired. Which, by the way, could have been part of the issue when we saw the doctor on Monday... It was just about Addy's naptime when we got there, and she ended up falling asleep in the waiting room at one point. Not the best time to be evaluating her eyes, I think.
Anyway, I think it is definitely still quite possible that she will need the eye surgery in the end, but I am interested in getting a second opinion and/or exploring non-surgical options. This surgery is a pretty minor one compared with the last one, but still never fun, and it sounds like it is fairly hit-or-miss. The statistics I've read say the problem is only corrected about 65-85% of the time, with the remaining percentage either causing no improvement or even worsening of the problem. Not the most encouraging thing to hear. Many parents that I know of whose children have undergone these surgeries have had to go through them at least twice.
So, that would be a new prayer request for us. We of course want to do whatever is best for Addy to give her the best sight possible, but it would be really nice not to have to go through more surgery... especially multiple surgeries. It would be another 4-6 months before we would get going on another surgery, though, so we have some time to get things a little more figured out. I'll keep you posted.
Oh, and I will post more recent pictures of Addy as soon as I can. :-)
Wednesday, December 1, 2010
I am pretty sure Addy's swelling reached its peak this afternoon. This was the day I was dreading almost more than the day of the surgery... but it turned out to be not so bad at all!
As I mentioned in my last post, the drain in Addy's head was removed this morning. (She took that like a champ, by the way!) Our nurse who came in afterward was actually a little irritated with the doctors for removing it so soon, because she thought there might be more to drain. This could have potentially contributed to a little extra swelling today, but the nurse later said she must have been wrong because the drainage site hadn't weeped too much after the tube was removed. So most likely it was going to swell about as much as it did anyway.
Addy's eyes were getting pretty tight this morning, but by this afternoon, all I could see was a tiny sliver of eye when she was really trying. Thankfully, she took this like a champ, too, and barely complained at all! It also helped that she slept most of the later morning and afternoon, so she didn't have to struggle with it for long. (I'm thinking this could be partly a credit to the oral antibiotics, which I discovered were probably making her pretty groggy.)
By this evening, her eyes were opening just a little more again, and she was able to see enough to be in a surprisingly good mood! I put her in her stroller and walked her around the halls for a bit, stopping to see a giant fish tank they have here. We watched the fish for a while, and then she turned to me and leaned forward to give me kisses. It was SO sweet!! :-) She then proceeded to smile and even giggle just a little as I played with her for a bit. I can't wait till my girlie is back to normal again... she is getting there!
Oh, also... the reason the doctors wanted to go ahead and remove the drainage tube was so that she could get her follow-up CT scan. We did that this morning not long after the tube was removed, and Addy cooperated very well and settled down into a doze for the scan. Yay!
She is sleeping peacefully right now, so I think I am going to hit the sack before long. I just put up some pictures of our journey over the past few days, so anyone who hasn't already seen the link on Facebook can check it out here. Caution: the reason I am not posting these on the blog is because they might be a little icky for anyone who is a bit squeamish. I really don't think they're that bad, but then I'm used to seeing things like this by now. So view at your own risk. ;-)
OH! And did I mention we can probably go home tomorrow morning? YAY!!!! :-)
Addy's drainage tube was removed this morning, so she is officially wireless! ;)
We had an adventure with her IV last night, though. She had an IV in her foot, but she kicked it off yesterday afternoon (didn't seem to hurt... she hates things on her feet, so I think she was happier without it). Addy already has a bunch of marks from other sticks (apparently others were having the same problem before they got the original IV in), so it was really hard to find a good spot that hadn't already recently been poked. A lady from the IV team came in and stuck her three times trying to get a line in and was unsuccessful. Another lady came in, looked for a while, and said she couldn't find any good place to stick... Later, two more ladies came in and stuck her twice more before they finally gave up. By this point, Addy was so upset and exhausted, and I was in tears. POOR BABY!!! I really can't blame the nurses (although I was a little ticked that they kept saying they wouldn't stick her unless they found a good vein and then stuck her anyway)... but the doctor in charge was apparently pretty set on having an IV in. Finally, the pediatric nurse was able to convince him to switch her to oral meds so she didn't need an IV. (If he had been in the room watching this whole thing, I have a feeling he would have changed his mind a lot faster.) THANK YOU, LORD!!!
The swelling is supposed to be at its worst today... Her eyes are pretty swollen at this point, but so far she can still open them a least a tiny bit. She will have a CT scan this afternoon to check up on everything. Please be praying this day will go well, especially that she will be able to keep down all her oral meds. Addy has a bit of phlegm in her throat and a little cough, so she has been tending to cough and gag a little when the meds are going in, and a bit of her pain medication came up last time. Thankfully, she seems to be doing okay on pain, and the IV was more for the purpose of antibiotics, which she did keep down. I am really hoping and praying we can keep it this way and not have to put her through anymore of what happened last night!!!