Wednesday, June 10, 2009

Round 3

I feel like I have stepped into the ring with (insert name of the toughest person you can think of) and they have let me have it. I have to say, I can almost identify with Job at this point! You think you are at your lowest and you just keep getting more. I have a lot going on that I won't even go into here, and then there is my sweet baby girl. We got out of the hospital late yesterday afternoon. I went down to xray and asked to see her films of her left arm that was done on Monday night because I wanted to compare it to last week's film. Well, much to my surprise, the break was worse. The displaced area has gone from about 1mm (as seen in the last post) to now about 1/2 the bone width. It is more sensitive and she is in more pain. I ran out to Chu's office to let him look at it with me to make sure I wasn't seeing something that wasn't really there, then I came home and called Dr. Mary Peterson-Suri in NC, who also has 2 kids with OI. She is a God send to the OI Parents who have the privilege of knowing her, always giving of her time and knowledge. I sent her the xrays and also called a friend with 2 OI kids in TN. Everybody agreed they could see the difference. I had tried to call our doctor in Omaha, but it was after 5:00 and I got an answer machine. Mary gave me a different number and when I called, his answering service said he wasn't on call. Mary believed Rhae needed a small wire, similar to a rod, put in her arm to help stabilize it, as there was no evidence of healing after 11 days, increased pain, and increase in the fracture area. I emailed Dr. Esposito and waited to hear from him today, not knowing if we would need to head out for surgery or what. I talked to him this afternoon at 1:10 and he suggested we see our ortho in Birmingham for a splint to be applied and try the conservative approach at healing before proceeding with surgery because Rhae is small and young, and they often can heal on their own at this age. So, at 1:20, I was on the phone with Dr. Killian's office in Birmingham begging to be seen today. The last few nights have been horrible. Rhae was definitely in pain, and I was giving her everything I could and couldn't keep her comfortable. Well, they said if we could be there by 3:45 they would see us. I called Jay home from work and started throwing stuff together. Amazingly, we made it there right on time and were seen right away.

This is where things really started for me today. Dr. Killian didn't agree with Dr. Esposito's plan and told us to keep her wrapped just like she has been for the last 10 days and she would feel better by Sunday. He said the hematoma needed to dissolve and make it sticky enough for the bones to stick back together to heal. I questioned this and mentioned that Dr. E had recommended a splint that I couldn't remember the name of, but it started with an S. He called the name of it and said it wasn't possible because they didn't make it for children. I assured him Dr. E had told me this was what we needed and he is familiar with Rhae's size and had seen both sets of xrays as well. He proceeded to tell me he couldn't put anything on her, that putting a rod (even though I said wire) in her arm wasn't even possible because she doesn't have anterior bowing and it would do no good, and the only thing he could do was put her in a body cast and she would look like the Statue of Liberty with her arm up, and the cast going all the way around her torso and down to her waist. (1) The wire would be put in for internal stability, not to correct bowing, and (2) casts are a big no-no for this break in OI kids! I asked him what we should do about the pain and reminded him I was giving her max doses of Lortab, Motrin, and Valium. He then told me (with a straight face) we should go home and try our best to cat nap during the day so we could stay up with her all night. I was livid--and I'm still so mad, I'm even tearing up about it now! I looked at him with what had to be the blankest stare I could ever have, then turned and started putting Rhae in her carseat. He said something about letting him know if we needed anything. I was real proud of myself that I was able to bite my tongue and remain calm and level headed during the whole visit (which is not my usual--i guess I'm just tired), but I knew if I was going to maintain my composure I had to get out of there. I said loudly to Jay that I guess I shouldn't have given her any Lortab before we got there and then maybe if she would have screamed and hollered for him like she has for us the last few days, maybe they would have taken her seriously and done something! He even mashed all over the area of the fracture while she flinched and whimpered and now she doesn't want me anywhere near the arm. I walked out fighting tears and throwing doors open as hard as I could! i wish I could have slammed them with the same strength! I got outside and Jay went to get the car and I just lost it! I really felt like we had just been blown off and my daughter had not really been considered! I felt alone in a big, unknown world. I felt like Dr. Killian didn't care whether my daughter hurt or not, or whether or not her arm healed incorrectly, only to cause more fractures down the line. I tried to call Mary for advise and was unable to get her. I tried to call Laurie because she has been through the same ordeal with her daughter and couldn't get her. Then I called my sweet friend, Christiane, who is always willing to listen to my rants and raving, regardless of time or place! I filled her in on what had happened and she encouraged me to call Dr. E back with everything we had been told and see what to do next. Christiane and I have never met in person. She has a daughter with OI as well, who is only a month older than Rhae. She has been my savior for the last several months. We talk on the phone a lot, and are so much alike. She's my OI soul mate and I love her! I realized after we got off the phone just how much love I felt for her and how much she feels for me and my family, because she was as irrate as I was at that point! (I know you're reading this, and I know I told you all that today, but again--thank you! You're always there for me when I need you! I don't want anything to happen to sweet Trini, but I hope at some point, I will be able to repay you for the support you have given me!)

So, I called Dr. Esposito, and while he said there were several things that Dr. Killian told us that were accruate, the bottom line was Rhae is in more pain than necessary and something needs to be done to try to correct that. He told me, "I don't like to see these kids in pain anymore than you parents do." He explained what type of splint he would put her in and offered to call Linde or Dr. Chu to ask them to do it and explain how to make it and put it on. I gave him Chu's numbers, and a little while later, he called back to let me know he had spoke with him and explained everything we needed to do and he would make the splint tomorrow. Chu called a little later to relay the info to me as well, so tomorrow, we will meet him at the clinic around noon to have the splint made and applied. He also said if it doesn't begin to heal, we will definitely consider putting in a wire for stability. I cannot tell you how wonder Dr. E is, though I'm sure you're getting an idea. Dr. Chu is also a good friend and takes such good care of us. I am forever grateful for everything he does for us!

I told Jay on the way home that I am tired, and I am through with Killian. I have never felt so helpless and I do not intend to accept anything but the best care for Rhae. Just because she has OI does not mean that she should have to put up with what she is now. If Aidan broke his arm, he wouldn't be expected to just leave it wrapped up and hope it healed, pain and all. No, it would be set and casted, and I feel Rhae deserves the same care, even though she can't have a cast. I am not going to let stupid decisions affect her life now and possibly in the future. I'm not willing to take the chance of this arm possibly not healing correctly and her ending up with a deformity that will only continue to break when she crawls, uses a walker, or wheels a wheelchair. OI does NOT make her any less deserving of good care and I will loose everything I have if necessary to make sure she gets that care! Jay and I have decided if Chu is ok with it, he will deal with our ortho problems (other than surgery) from now on. We have every confidence in him and his ability, and believe that he can handle anything that should come up with the advise of Dr. E. We will have all our surgeries in Omaha (somehow).

My children mean more than anything in this world to me and I was reminded of that today. Our OI Parent support group nicknames parents Momma and Papa Lions, and the children snowflakes. Like snowflakes, all OI children are fragile and beautiful, and no 2 are alike. The reference to the lions has to do with the advocates we have to become for our children. My Momma Lion came out in me today, and while she can't understand it right now, I only hope that one day, regardless of anything else, Rhae will understand how hard I have and will continue to fight for her (if only I could do the same with federal funding, but that's a whole other post!). I hope I never have to fight like this for Aidan, but I hope he knows I would go to the ends of the earth for him.

The last 10 days have probably been the worst I have had in the last 2 years. It's been one fight after another, and while I don't have the bruises to prove it, surely the bags and dark circles under my eyes count for something! I didn't mean to get so emotional in this post, but if you take nothing else from it, just remember that not all doctors are willing to listen to you as a parent, spouse, child, whatever, and if you don't agree with a plan, find another doctor who will listen to you. You are the one who spends time with their patient. Nobody knows them like you do!

Thanks to everyone who has prayed for Rhae. Please continue to pray for her comfort and healing. Pray she will not need surgery to fix this arm. Please pray for my strength, as I am beginning to feel weak. I know prayer will help me fight these demons and restore my strength. thanks also for the prayers for my Daddy. He did wonderfully today! God is great!


Melissa Swartley said...

Geez!!!! I totally feel your pain! We went through a couple of crumby doctors too! The "S" splint... was it a sugartong or a SAM splint? The SAM splint is awesome! It can be cut to size and it is radiolucent - can be xrayed through. A sugartong is a style of splinting, resembles a pair of tongs the bend in the tongs goes at the elbow... there might be photos on the net about this. You probably already know about these, I'm just throwing it out there. I sure do hope things work out for Rhae soon and that she heals quick and good! Sending you many hugs at this frustrating and upsetting time!!!

Khim Seebzee said...

Dear Dana
Today it's about 2 hour I am only looking your profile and reading your web-pages, but I am not satisfied. You are doing impressive work. Life of your daughter will not possible in Nepal, when I said about your story and Rhea to my wife, she is puzzled. because in Nepal we can not imagine, if a mother has OI baby inside their womb.
and after reading about you, your and mine many things are similar.
you have two babies, I have two babies
you are a nurse, my wife was a nurse but in the village.
You like libraries (Demopolic public library) and I am working in a medical library. you have OI baby and I have OI baby. so many similarities with me and you, so I am so happy to leave a small comment to your blog. I would like to be a friend of you. and my wife also would like to friend of you. is my wife's email id.
looking forward to hearing from you soon

khim and durga