I'll quickly re-cap some things from this past month, and then update what happened today. So, McCoy developed some red troublesome areas on a couple of his expanders, and we dealt with another scare when he got what looked like an infection under his armpit, close to his right shoulder blade expander. We had to religiously wash under his arm with antibacterial soap, and rub a more intense hydrocortisone cream under there as well, twice daily. So on top of all the moisturizing and cortisone cream and scar recovery gel I normally apply, I added this routine to my existing routine. Fortunately, nothing became infected as a result of his underarm, and it's cleared up. I took pictures to capture it, and Ly almost put us on antibiotics just to be safe (but we were thankful we avoided those):
Here are the worrisome areas:
McCoy's fills have been going well; we've had a few weeks in a row where each port was pricked only once with the needle, and not multiple times. The nurses have gotten in the swing of things, and so have Dallas and I. In fact, the first week in May our fill went extremely well! This is what I said about it then:
"BEST fill yet! Got all the expanders in one shot!...meaning no re-pricking. Needle in, didn't come out, presto!..and he watched his music video the whole time and calmed after each one except the last. Whew. I needed that today. So thankful."
The third week in May Dallas had to go to Mexico again, but thankfully Shayla was able to come to the fill with me. Such a blessing having her close:
"Auntie Shay Shay came to the fill with us today, so thankful she was there she helped
so much!! Distracted McCoy very well while I held him. We weren't able to get
each port on the first poke, but it still was a good fill overall. Also, I was able
to flip his port right before. His right shoulder blade expander is
still pink & we think its because the skin is so thin (other moms think the
same thing, as I posted pics on my fb removal group and asked about it). His
bottom expander is still not filling out symmetrically which is discouraging.
We will schedule next week to see Burns (prob for the following week). Nurses
are interested (as are we!) to see how much longer Burns thinks. Nurses said
they can tell his skin is getting to the "end" as they weren't even
able to put as much fluid in his shoulder blade one...eventually they'll just
have to put less & less. Hopefully we still end up with enough skin. We'll
see what Burns says in a couple weeks. Rash is under control for now. Just
hoping that red spot isn't an infection but I don't think so & neither do the Ly and Iliana (nurses). They may treat him with antibiotics just in case. That's all! Thanks
again Shay for coming, it meant so much!! :) Love you guys thanks for your
continued prayers."
And that catches us up to today. Today we went in for McCoy's 12th fill (June 1st). It has been 3 months since his expanders were placed. This fill was by the far the fastest one yet. I think I did an extra good job numbing his ports today, and the nurses were just extra great today as they finished his fill in much less time than the usual 30 minutes. After the fill, we met with Dr. Burns. I shared my feelings prior to meeting with Burns in a text:
"Today we meet with Dr. Burns. I had dreams about it all night. My hopes are so high and I find myself trying to push them down and not think about best case scenarios. I'm trying to force my expectations low so that I won't be disappointed. I feel emotional/anxious, and I usually don't going to his appointments. Today will be our 12th fill, and we will have been doing this for 3 months. Wow. Thank you for supporting us all this way so far, and for all your thoughts and prayers. We'll let you know how today goes. Here's to another good fill hopefully!"
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| Waiting to see the doc |
So - talking with Burns went well, and we were given both good and bad (or discouraging) news. I'll start with the disappointing information: 3 of McCoy's expanders still have unexplained redness on them. For a while now, McCoy's top right shoulder blade expander has had redness, and I say "unexplained" because the nurses have never seen redness appear in the area that McCoy's has. It's in the middle of the expanded skin, and does not appear to be from infection. It's not warmer than the surrounding area either. Usually an infection occurs at the port site, or the incision site. Or the entire expander will be red. But to have a patch in the center is odd. Well, to add to that, McCoy's neck expander (in the center top) has unexplained redness now too. I've noticed it in the past, but it's faded. As of a couple days ago, however, it's been bright red, and very odd shaped. (As shown in the pictures above). As of last night (I think) McCoy's bottom (biggest) expander developed redness across the center as well. Not good. This morning it was even darker red. Burns said based on what he's seeing, the skin has basically reached its end. He said he was amazed at how well the whole expansion process has gone for us, and immediately began measuring and marking with a pen to see if we reached our goal and would have enough skin to remove the entire nevus. As you can see from this picture below, we are just shy having enough skin to remove it all in one take. Dr. Burns felt, however, that in a few more weeks we should hopefully have enough. It's difficult to say, as he does not want the expanders with redness to be filled if they continue being red. They had a photographer come in and take pictures, and we are going to compare the troublesome areas this week, to how they look next week. We go in for his usual fill next Thursday at 11:30. If those areas are worse, or new areas of concern pop up, they won't fill those expanders. If those areas look about the same, they will very minimally fill those expanders. After Burns measured the skin, he said we're so very close, and things have gone extremely well up to this point, but he can tell McCoy's skin is "getting near the end" and he discussed with us possible surgery dates. This is the good news!...that we finally have a light at the end of the tunnel, with a surgery date to look forward to. However, the first part of July Dallas will be completely tied up with major things at work, and won't be able to take a day to be at the hospital for those 23 hours for surgery (it will be the same as his insertion surgery - a 23 hour admittance to the hospital). He also will be pretty unavailable in the evenings and weekends, as he'll be working longer hours than normal. As the surgery scheduler looked at Burn's schedule, and the hospital's, she told us sadly she did not have any availability the last week in June, which Burn's had mentioned would be an option during our discussion. Sadly, the only times available will be either Wednesday July 6, or Wednesday July 20th. I had hoped so much if Burns said surgery could be in July, that there would be availability the second week...then Dallas would be through the worst of it at work, and could be around to help. But with only the 6th or 20th to choose from, we scheduled it tentatively for the 20th (which the scheduler had to actually pull strings for with the hospital, as technically Burn's doesn't do surgeries that day in the pediatric unit), but I am to let her know in the next couple of days if we want to change it to the 6th. I asked Burns if it would make a difference, skin-wise, if we scheduled for the 6th or 20th. I obviously want to be done and the sooner the better, but I also want to have enough skin, and would not push surgery up unless we truly still had enough and could get it all in one shot. Burns assured me those 2 weeks difference would not make a difference at all. We'll either have enough, or we won't. So, now we think and pray and discuss and try to figure out what to do.
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| The 2 blue lines on the nevus show where the good skin can get to, to those 2 lines...but the area in between those 2 lines we still don't have enough skin for. It measures about 2-3cm. |
After getting home from the fill today, I checked McCoy's back and was nervous to find that his bottom expander looks even more red, and patchy red in places it wasn't before the fill. I really hope his skin can hang in there and not break down. We are SO close, it's killing me. We have come so far, and I can hardly believe we've made it to this point. It feels so wonderful to have a surgery date in mind and something happy to look forward to (I always wished that we could be done before McCoy's 1st birthday, and I can't explain how happy and blessed I feel knowing that this wish will come true), I just hope we can finish this thing well, with no further complications or unexpected bumps. We have been blessed beyond measure through this whole thing. I think often of the scriptural account (I think I've mentioned previously) about the boy who was born blind. The disciples ask Christ who sinned that the boy should be blind - him or his parents. And Jesus responds (John 9:3), "...Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him." I have seen the works of God made manifest through McCoy. Through this trial, through this whole process. I have never been so aware of so many blessings in my life. It is almost incomprehensible to me the goodness of Heavenly Father, and the amount of love He has for each of us. It is immeasurable the amount of blessings I have felt and seen during this whole experience. Heavenly Father has blessed us so tremendously that I almost feel undeserving...I expected so many more things to wrong, and so far, we have gone through this in the best way I thought possible. I am so grateful for Heavenly Father taking care of us through this, and for manifesting His love and power countless times. I hope those close to us have been able to see His works too.
Thank you for your prayers, we're almost through this! :)
Progress Pictures:
And just because he's so cute...here's some pics of his darling face :)
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