Insurance sucks!

Wow, I haven't been on this blogsite in a long time. Well, here's what's new. I have been trying to get my son seen by an HTC for the past couple of months. The HTC in nyc doesn't accept his insurance. I called his insurance and they dont even have an HTC within their network. They told me that my current hematologist would have to call their clinical department and answer a bunch of questions and convince them that it's necessary. I don't see that happening at all. I have been pushing my hematologist to call and consult with the HTC for months.Just for a second opiion, it can't hurt. My son has an inhibitor and I really feel it needs to be under control. He is just getting over his third bleed in the last 3 1/2 months. It's too much. This poor kid. I feel so horrible for him. But like always, he's such a strong little man. Nothing ever breaks his spirit. I'm going to do all I can to get this insurance problem dealt with and hope for the best.

Back home from the hospital...again.

I feel like I say that all too often. We had a good couple of months though, this was only our second time back to the hospital this year. Last week had to be the most horrifying week for me. It all started when I took Luis in for a check up after noticing some tissue had come out where his broviac line was. The surgeon shocked me when he said that Luis needed a new line. As some of you may know, we've been doing so good. We had so many problems last year due to an inhibitor, but just 2 months ago his inhibitor was no longer detected. We started prophy and everything was great. When they told me he needed a new line I was obviously upset because I didn't like the idea of yet another surgery. All I could think was " my god, this will be his 4th surgery and he's not even 2 years old" After thinking it through, I told the doctor that I would rather him have a port put back in instead of a broviac. I thought it would be better because he no longer needed so many infusions now that we were on a prophy schedule. And of course, I feel that it's tough enough to be a little boy and have this bleeding disorder. I want him to be able to take baths and go swimming with his sister this summer. He couldn't do that with a broviac.

He was scheduled for the O.R. last week. I felt horrible, but almost like it was routine. I knew exactly what I had to do. Before surgery, they gave him a dose of factor 8. I put my scrubs and mask on and walked alongside the stretcher to the operating room and once again I had to hold back my tears as I watched my son's body go limp in seconds as they pushed through the anestesia. That has to be the worst feeling in the world. We waited for about 3 hours until they called us in. He looked so good. They were able to get a port in and I was so relieved. When we took him to the room, something just felt wrong. Was he supposed to be in this much pain? This wasn't like the last couple of surgeries. Tylenol did absolutely nothing for him. They had to give him morphine every hour just to keep him comfrtable. He finally fell asleep and we all went to bed. It was 3 o'clock in the morning when I woke up to his cry. I turned on the light to find that my baby was swollen from his chest, up his neck and into the side of his face. He couldn't move and cried in pain. He was bleeding, I knew it immediately. Everyone was called in and they had me sign papers for an emergency surgery. His hematologists came in and told the surgeons to hold off on surgery. They gave him a large dose of novo7 assuming that the factor 8 wasn't working. They continued that every 4 hours until they noticed the swelling going down. He had x-rays everday to make sure the port was ok. All his infusions were through an IV in his foot. The port couldn't be used due to the large hematoma over it. In the next couple of days the blood results came back and confirmed what had happened. His inhibitor was back and stronger than ever. He basically went into surgery with no clotting factor, so when they closed him up he continued to bleed slowly. The blood had nowhere to go but to follow the tunnel that the port was placed through. So now, there we were in the hospital back on novo7. They changed his dose to every 8 hours last week in hope to get us home, but with my son, nothing is easy. During a dressing change his incision site slightly opened and began to bleed. We went back to every 4 hours immediatey. His doctors tell me that we'll attempt to overpower his antibodies as a soon as possible because he isn't responding as well as he should to the novo7.

I've never felt so helpless as I did last week and continue to feel that way now. I'm just glad to have him home. No matter how much I stress or how much I've cried, you would never be able to tell that he's been through all of this. He is just the happiest little boy. He laughs and plays like he has not a care in the world. I pray that this will get easier. Not only for my son, but for everyone affected by this bleeding disorder.

Please support our team for the 2009 Hemophilia Walk

Hey everyone. I've been super busy and haven't had time to post any new blogs. Just this weekend lil Luis had a double bleed. One in his right arm and another in his left knee. It was so sad, he couldn't move and it was extremely frustrating for him. He's much better now and we're going to the hospital tomorrow to see how he reacts to Factor 8 now that his inhibitors are undetectable. We're crossing our fingers and hoping that we're able to start prophylaxis. Well, I am writing becuase we will be participating in this year's Hemophilia Walk in NYC. We're asking friends and family as well as anyone who is interested in walking to join our team. I know many of you are far away and may not be able to walk with us, but it would be wonderful if you can help us reach our fundraising goal. This is a link that will take you directly to our team page. http://my.e2rm.com/TeamPage.aspx?EventID=26380&LangPref=en-CA&TeamID=106491

Every donation is deeply appreciated and we are extremely thankful for everyone's help and support. Please forward this message to anyone you think might want to help. I know with our combined effort through this Hemophilia journey, we will one day have a cure for our little boys and anyone else with bleeding disorders. Thanks so much.

Another Hospital Visit

Well, we had a scare on Monday morning. Luis couldn't move his entire right leg and was extremely sensitive to any sort of touch. Immediately I thought it was a bleed so I infused him right away. What was strange was that there was absolutely no swelling anywhere and I could easily bend his leg. What made him scream was when I ran my finger down his thigh. I didn't know what to think, but that maybe it was some sort of muscle bleed in his thigh. I took his temperature (rectal) and it read 104.7!!! I thought to myself, that can't be right. I grabbed another thermometer and it read 104.5 ....I packed a bag and was on my way to the ER as fast as I could. As we waited in the ER half his right leg starting with the knee began getting bright red and swelling. Doctors came in and had an ultrasound done to see if there was a clot in his vein or something wrong with his line (his central line was put in through his right groin and comes out on the side of his belly). Everything looked good. Finally the infection disease specialists came in and said it was a skin infection called cellulitis and it spreads fast. I don't know if I've mentioned that Luis also has a severe eczema issue. He said that he probably had an open area of skin in his knee and some bacteria got in. They took blood to send out for cultures. They couldn't get blood from his line so they had to find a vein in his arm. They tried the left arm one time and there was nothing then they successfully got blood from the right arm. They gave him Tylenol with Codine for the pain and started him on an antibiotic called Vancomycin. All of a sudden his face starts turning red as well as his hands. I lift up his shirt and he has hives all over. He had an allergic reaction to the Codine. They gave him Benadryl right away. At this point I'm so frustrated because I felt like...If it's not one thing it's the other. Oh but it only gets worse. He was wearing a long sleeve shirt so I couldn't see his arms. My friend went to go grab his left hand and he jerks back screaming. I lift up his sleeve and there's a huge bump all black and blue and he can't move his arm. Now I'm almost in tears wanting to scream because this poor kid doesn't get a break. He got a huge hematoma from when they poked him. That's never happened before. Not even when he's been poked like 4 times in one arm. Finally we got a room later that afternoon so we were much more comfortable. Luis also feels better when we're in a room. He's been there so many times it's like our second home. We have a crib, sofa bed, bathroom with tub and shower, and a huge plasma tv. Luis loves watching Elmo while he's there. This was probably our shortest stay ever. We were only there for 3 days which was great compared to 3-4 weeks like every other time. By the 2nd day on antibiotics, he was feeling so much better. He spent his time riding a little car all around the 3rd floor (wearing his comfy cap of course) and enjoying whatever activities they had planned for the day...except for the magic show, the clown scared him. lol. I spent my free time helping out the art department for an upcoming show/fundraiser. Well, were home now. They sent Luis home on an oral antibiotic for 7 days. I have to speak to his 4 amazing hematologist doctors on Monday about what the plan is going to be for Luis. They've already told me that he's gonna be a "special" case. In more than ten years that the doctor's and nurses have been there they've never seen a hemophiliac as often as they've seen Luis in the past 18 months. We're going to try what they call immune tolerance. It'll take a couple of months, but hopefully it will get rid of all his antibodies. If it works out, we'll be able to do prophalaxis and infuse him only 3 times a week as opposed to every 8 hours. The docors say it will let him have a more "normal" life. All I can do is hope for the best.

The Magic Shin Guard

Well I finally figured out how to add pictures onto my profile. lol. Forgive me. I'm new to this whole blogging stuff. This is my baby Luis Jr. or as my sister has nicknamed him "bubble boy". I like to call this his modeling pic because he has such a serious look on his face. Well as I might have mentioned, Luis got another bleed in his left knee on 1/23/09. Well thank goodness for being able to infuse at home. His hemotologist has called me twice a day since then to check up on Luis. We are currently giving him factor every 4 hours and it seems to have worked great. Today he was moving around a lot more and doesn't seem to be in as much pain. Yea he still drags himself across the floor like a little wounded soldier, but it's a big improvement from what he was a couple of days ago. Oh yea, I should mention what we use when he has a bleed in his leg. One day I was at my mother-in-law's house and his leg was already in pain from a bleed. I was so frustrated because he started to cry with every wrong movement in his leg. I looked around my 12 year old brother-in-law's room and found one of his shin guards from soccer. I grabbed it, put it behind my son's leg, closed the straps and that was it. He was so much more comfortable for the rest of the day. Because it's a shin guard, it curves nicely around his leg and the straps tighten above and below his knee so nothing is touching the swollen part and it keeps his leg straight and unable to bend. I still have that shin guard and have used it ever since for knee bleeds. He's actually using it now. It's been a lifesaver for me and I wanted to share this just in case anyone wanted to try it one day.

Here we go again

My son's name is Luis. Since he's been born he's had spontaneous bleeds in both wrists, both ankles, both knees, and lower back. Many areas more than once. Every hospitilization has been difficult because of the fact that he's getting what doctors call "target joints". It's when bleeds keep occuring in the same spots. It scares me because his hemotolgists told me that too many bleeds may cause that specific joint to freeze in one position. He's 17 months old now and still hasn't walked. Everytime he gets closer, there's a bleed and it delays him again. This morning he woke up and was not able to crawl or stand up on things like he usually does. I took off his clothes and began checking his legs. I noticed no swelling anywhere, but he'd cry when I bent his left knee. This knee has been a problem before. The doctor said to give him factor every 6 hours and he'd call me later. By the time he called in the afternoon, Luis's knee had gotten worse instead of better. He said to infuse every 4 hours and that he'd call me in the morning and take it from there. It's so frustrating. I couldn't help but cry. My son has been getting factor every 8 hours for the past 2 months and he still gets a bleed? How will I ever make it to three times a week? (which was the plan after we left the hospital 1 month ago). He was getting so close to finally taking his first steps beginning last week and now this. It's just been one thing after the other. He currently has inhibitors against factor 8 so he's getting frequent doses of factor 7 to bipass factor 8. I just pray to God that he's not getting inhibitors against this too. Here goes another night of no rest. Next infusion at 12:30am then at 4:30am and so on. When will this get easier?