This time, I left feeling so much more relief, knowing that we would finally be treating the ulcers. I realize the hemangioma is at the root of this entire issue, but it is the ulcers that are causing her so much pain.
The great news is that they aren't infected. Huge relief there. The other good news is that the big ulcer does have new skin forming and starting to fill in the ulcer, based on the treatment we were already doing. It didn't stop the new ulcers from forming, or the original one from hurting, but at least it was starting to finally fill in with new skin. I know it's going to take awhile, since the ulcer is so deep and needs several layers of skin. I want it to be better now, but I know it's going to take time.
So here is the new treatment plan:
- We are to apply three different medications to the ulcers. The first is Lidocaine, a local anesthetic which is used to numb the area. We can only apply this up to three times a day, and we were cautioned to be sure not to use too much because the side effects can be toxic. The doctor said it is very safe to use, we just have to be sure to apply no more than the prescribed amount. Soooooo, even though we can use it up to three times per day, I am opting to just twice. Not taking any chances there.
- The second medication is Silvadene, which is an antibiotic ointment typically used on burns, but has been found to help ulcers. We can use this every diaper change. I consulted Dr. Google when I got home, looking up each of these medications, and read that Silvadene is not to be used on premature babies or infants under two months old. Hmmm....So we used it sparingly that first night, until I had a chance to call up our doctor to ask about this since Rylee was a preemie and also not quite 2 months old. I was assured that they have been using this medication to treat many, many babies and it was safe to use. I'm choosing to just trust our doctor.
- Lastly, we are using a thick layer of zinc oxide over the entire hemangioma to act as a barrier with each diaper change.
- We are to stop the Timolol for the time being. I take this as to mean we are making the ulcerations a priority and once those are healed, we will get back to shrinking the hemangioma.
Diaper changes still suck and are still painful for Rylee, but it doesn't seem to be near as bad as it was a few days ago. This new treatment plan appears to be working as far as decreasing the amount of pain she is in. The ulcers look the same as they did when I took these pictures, shown in my previous post, but hopefully they will start clearing up soon.
I want to thank you all so much for your kind words, suggestions, and the many prayers that have been said on Rylee's behalf. The response to my last post when I shared in more detail about little Rylee's poor little bum, has truly filled my heart with love, and has made me even more grateful for this blogging community. One gal just happened upon my blog, seeing the post title, "Is This an Urgent Matter?", while reading another blog and being drawn to it. The absolutely amazing part is that this gal has gone through the same thing with her 19 month old son having a hemangioma on his bottom. She clicked on the link to that blog post and it just so happens that our babies have this unfortunate issue in common. When I opened her email and read that she knew exactly what we are going through....well, I can't even begin to describe the warm fuzzies I felt by her reaching out to me. She explained everything they had done to help treat her son, offering suggestions of all the things they had found to help. All I can say is thank you, thank you, thank you!
So glad you got some more treatment options for her!! I hope they have already started to help reduce her pain!
ReplyDeleteSo glad you have a plan for treating those painful ulcers! XO
ReplyDeleteThank goodness they are doing more. I can't imagine. I will continue to pray!
ReplyDeleteI am so glad to hear more is being done to help Rylee and you :) Prayers are continued for ya'll!
ReplyDeleteSo glad to hear she is feeling better with the new treatment plan!
ReplyDeleteIsn't this blogging community amazing? How wonderful that you got to make contact with another Mama going through the same thing. I had never really heard of hemangiomas 5 years ago, and now I can't believe how common they really are!
I will continue to send good vibes to everyone and hope for a speedy recovery
I was just thinking of you and baby Rylee last night as I was lying in bed. So glad you have a plan in place. Sending healing prayers her way!
ReplyDeleteIt sounds like things are finally starting to fall into place and being taken care of. I was so happy to see that you met someone else who is going through this. It helps so much to have a person who can truly understand.
ReplyDeleteSo happy to hear that you have another treatment option. I hope that Rylee is feeling better very soon!
ReplyDeleteGlad to hear that you can get some treatment. My dad has ulcers on his legs from his diabetes and they always do the same type of treatment using zinc oxide with a dressing and compression stockings. Seems to help him a lot. Hoping your little one will soon feel better.
ReplyDeleteSo glad to hear that Rylee is getting some comfort from the new treatments and that you are feeling so much better about what is being done for her. You just make me tear up and I feel it is just so much emotion at one time, hurting for those I love and pride in what a great caring and loving human being and Mom that you are!! I am sending loads of prayers that this helps Ryle become pain free and heals those ulcers quickly! And that your world just becomes a place of pain free joy for your family of 4!!! Love you, Auntie
ReplyDeleteI am so glad they are being more aggressive in treating her for pain. Poor girl. Poor you! Much love to you.
ReplyDeleteOh my gosh, I've been thinking about you! Knowing how often you have to change an infant's diaper, and having it be so painful must be gut-wrenching. So glad that you're finally making some progress on treating her!
ReplyDeleteI have happy tears just streaming down my face right now. I am so relieved on so many levels - you have a good plan and you have such a team of people backing you up, including a woman who has experienced the same thing!!! What a blessing! Also, I'm not a medical professional, but I just have to say that the fact that the ulcers aren't infected seems like a HUGE accomplishment on your part. It seems almost impossible to keep such large wounds from becoming infected when they are constantly covered in poop and pee. BUT you have treated them with such care and diligence and you have prevented those infections from forming. Way to go, Mama! Also, I am thrilled to read that they have her on lidocaine. Long story, but I was put on lidocaine ointment after Harriet's birth when my tear wasn't healing properly. That stuff is powerful and works great. It literally numbs, not just dulls, the pain. So I'm guessing she's feeling quite a bit of relief, and that makes me so, so happy.
ReplyDeleteI'm glad your doctor is taking care of this, finally, and that little Rylee is doing a little better. The pictures were so awful, it almost hurt just to look at them. Hoping the new drugs help soon.
ReplyDeletePlease use the lidocaine as prescribed, lidocaine toxicity only happens if lidocaine is injected by IV. Not if it is applied topically, at not when it is used at a 5 percent solution, which is what you have. The lidocaine only numbs for a couple of hours, so you are depriving her of some hours of pain relief with out really ant need.
ReplyDeleteI'm sorry, but her doctor made a very strong emphasis on not using too much of the Lidocaine and stressed the potential side effects. He prescribed that it be used UP TO 3 times/day, not that it had to be. I am using it as I deem necessary, based on her tolerance during diaper changes, up to 3 times/day. I think I will go with our doctor's advice on this one. I think I will also choose to error on the side of caution. You telling me I am depriving my daughter does not seem very supportive. I apologize if I am reading your comment with the wrong tone.
DeleteGlad to hear a new plan is in place and I hope it helps her!
ReplyDeleteI was given lidocaine as a teenager when I had really bad poison ivy and it helped with the pain so much - so I hope it is helping little Rylee too! Although those warnings do sound scary! It sounds like you are doing such a great job taking care of this, but I'm sure you can't wait until it's all healed up. Thinking of you!
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