Last week, before going to Shriner's, I had to pick up a copy of Delaney's x-ray from the first doctor to take with us. As I was sitting in the waiting room at Shriner's I opened the envelope to take a look at the x-ray one more time. Included in the envelope was the letter from Dr. F (the 1st ortho we saw) to our pediatrician. Basically it was a letter summarizing our visit. As I read the letter I just got madder and madder. Remember this is the doctor who said Delaney's RVAD angle was zero COBB angle was 40 degrees and that all we could do is brace her until she is old enough for spinal fusion surgery. This was also the doctor that I said didn't even touch her during the exam. In fact, he didn't even have us undress her, although Michael did open her shirt to show him because it was to hard to describe the bump. But he barely glanced at her. Here is one of the paragraphs from the doctors letter...
"On physical examination, looking, at her back, she has no hairy patches or dimples over her spine. She has no cafe au lait spots. She definitely has a left sided thoracolumbar type curve, it appears. With a little bit of traction on her, she seems to be fairly flexible. She has excellent range of motion of her shoulders, elbows and wrists bilaterally. She seems to have good strength in them, normal sensation and pulses. There is no swelling or atrophy present and no tenderness palpation. In her lower extremities she has normal range of motion of her hips, knees and ankles. She seems to have good strength, normal sensation and pulses. She has no swelling or atrophy present in them and no tenderness to palpation. She has a negative straight leg raising and no clonus and normal reflexes."
First of all, he was in the room all of 4 minutes. It's not like he was even watching her move around and play. In the letter he says "with a little bit of traction"...what the heck, he didn't even touch her. How would he know she had normal pulses, strength, sensation ect.. No one except the x-ray tech even touched her, and the doctor wasn't in the room for that. He didn't take her diaper off to even look at her lower spine to see if she had "hairy patches, spots, or dimples". How exactly did he come to all these conclusions? Why would his letter to our pediatrician say all of that? Is he a bad doctor or is he so arrogant he thinks he did his best? How many others has this happened to? Just to compare, Dr. Schrantz at Shriner's, had her in her diaper the whole time. Even opening the diaper to look at the base of the spine. He felt her back, checked her hips, moved all her joints, held her hands while she pulled herself up. He twisted her all around checking her spine. How can 2 appointments be SO different?
The thing is, I would have never known about this if I hadn't requested a copy of her records. And everything in this letter is what our pediatrician now thinks is what is going on. Imagine if we hadn't questioned. What if we had taken our doctors word on Delaney's prognosis. I know we all want to trust our doctors. We want to believe they are all knowing and have our best interests at heart. But the truth is, only we have our children's COMPLETE best interests at heart. We should always question, question, question. Get 2nd opinions and 3rd and 4th until we are comfortable with the care we are getting. Especially when it comes to our children. We have to be there voice, we have protect them and always try to do what is best. We are our children's best advocates. So if this has taught us anything, it's get lots of opinions and then go with your gut. We won't ever be afraid to speak up again. As in Delaney's case, it can make all the difference in the world.
Monday, February 16, 2009
Wednesday, February 11, 2009
Our plan with Shriner's
Well, where do I start...so much has happened. I will start by saying we ALL ended up with the flu. So our weekend was full of trying to disinfect the house and do LOADS of soiled laundry all while being sick and taking care of 2 sick girls. In fact Michael didn't even get to go to Shriner's with us on Monday because he was still sick (as was Mackenzie). So Mackenzie and Daddy stayed home, while Delaney and Mommy headed to PA. Our appointment was for 12:45, we got there at 12:15 and were told it would be a 2-4 hour wait...ugh! But I wasn't about to go anywhere! So we waited. Delaney was an angel and it really wasn't so bad. We got called back at about 3. Then everything seemed to happen very fast.
I preface this by saying the other 2 doctors we had seen (Crystal Clinic & Cleveland Clinic) only see 1 or 2 cases of PIS every 3-5 years. Shriner's sees about 400 cases a year from children all over the world. So they know what they are doing. The first thing they said was that you can't get a true angle reading on the x-ray if the child is sitting. And of course that was how the other drs had done it...so this doctor had us do more x-rays first. That's when all the good news started happening. Her previous diagnosis was COBB angle (angle of the spine) was 40 degrees with the RVAD (Rib angle from the spine) was 50 degrees. Which is pretty bad. Well, with the new x-ray and doctors who know what they are doing her actual COBB angle is 23 degrees and her RVAD is 18 degrees. WOW WOW WOW!!!! SO much better than we thought. Seems all the prayers for our little Delaney are working some big miracles! They believe she is a good candidate for the casting and that they can completely correct her curve.! Hurray!! THANK GOD!!!
After the appointment, I was introduced to Delaney's "team". Aside from her Ortho Surgeon and her Certified RN, I was introduced to 2 other ladies, her Certified Physical Assistant, and a Care Coordinator who basically takes care of your every need through it all. These 4 people make up the team of professionals we will be working closely with over the course of our journey. I was then shown a video on casting and given a short tour of the surgery wing. They were amazing. They made us feel welcome and comfortable and you could really tell they knew what they were doing. I had such peace about the whole thing. It was such a relief after all these weeks of stress, worry and fear.
Her casting is scheduled for March 4th...3 weeks from today. I am so thankful for this opportunity. What a whirlwind this has been. In 3 (long) weeks, we have come so far. If any of you watched the video (see sidebar), you know that to cast her they have to put her under anaesthetic. Which is the only part that scares me. It's so scary that so many things can go wrong from that. Some of the moms I have been in contact with who's child had casting reported vomiting and or asthma anywhere from a couple days to 2 weeks. So hopefully she won't have any of those reactions. Then they will put her on this special table, and using the table and their hands manipulate her spine and ribs as straight as they can and then apply the cast. So I am sure she will be a little sore after, and I know it can irritate her delicate skin. Dr. Schrantz seems to think that she will need to be in a cast for about 1 year. We will be traveling to PA every 2 months for a new cast to be put on until her spine is straight. So we have a long road and lots of issues that are bound to pop up, but the end result is totally worth it. Our baby girl will be healed!!
I preface this by saying the other 2 doctors we had seen (Crystal Clinic & Cleveland Clinic) only see 1 or 2 cases of PIS every 3-5 years. Shriner's sees about 400 cases a year from children all over the world. So they know what they are doing. The first thing they said was that you can't get a true angle reading on the x-ray if the child is sitting. And of course that was how the other drs had done it...so this doctor had us do more x-rays first. That's when all the good news started happening. Her previous diagnosis was COBB angle (angle of the spine) was 40 degrees with the RVAD (Rib angle from the spine) was 50 degrees. Which is pretty bad. Well, with the new x-ray and doctors who know what they are doing her actual COBB angle is 23 degrees and her RVAD is 18 degrees. WOW WOW WOW!!!! SO much better than we thought. Seems all the prayers for our little Delaney are working some big miracles! They believe she is a good candidate for the casting and that they can completely correct her curve.! Hurray!! THANK GOD!!!
After the appointment, I was introduced to Delaney's "team". Aside from her Ortho Surgeon and her Certified RN, I was introduced to 2 other ladies, her Certified Physical Assistant, and a Care Coordinator who basically takes care of your every need through it all. These 4 people make up the team of professionals we will be working closely with over the course of our journey. I was then shown a video on casting and given a short tour of the surgery wing. They were amazing. They made us feel welcome and comfortable and you could really tell they knew what they were doing. I had such peace about the whole thing. It was such a relief after all these weeks of stress, worry and fear.
Her casting is scheduled for March 4th...3 weeks from today. I am so thankful for this opportunity. What a whirlwind this has been. In 3 (long) weeks, we have come so far. If any of you watched the video (see sidebar), you know that to cast her they have to put her under anaesthetic. Which is the only part that scares me. It's so scary that so many things can go wrong from that. Some of the moms I have been in contact with who's child had casting reported vomiting and or asthma anywhere from a couple days to 2 weeks. So hopefully she won't have any of those reactions. Then they will put her on this special table, and using the table and their hands manipulate her spine and ribs as straight as they can and then apply the cast. So I am sure she will be a little sore after, and I know it can irritate her delicate skin. Dr. Schrantz seems to think that she will need to be in a cast for about 1 year. We will be traveling to PA every 2 months for a new cast to be put on until her spine is straight. So we have a long road and lots of issues that are bound to pop up, but the end result is totally worth it. Our baby girl will be healed!!
Friday, February 6, 2009
The flu on top of it all.
Well, Mackenzie has the flu, so I am asking that you pray that the rest of us (especially Delaney) don't get it. We are 3 days away from our miracle appointment with Shriner's and can NOT be sick! Wednesday night Mackenzie started vomiting. She got sick about every 20 minutes for 8 hours. I thought she was perking up yesterday afternoon, she even played a little. Then it started again, 3 times last night and 3 times this morning. We just can not afford for Delaney to be sick for a 2 hour car ride to and from Shriner's. Of all times for this to happen. So pray for the munchkin that she stays healthy.
I am really looking forward to Monday, I just want to get this started and I need to feel like we are doing something for her. I feel like each day that passes her little spine could be getting worse. It is a terrible feeling to think you aren't helping your child. Waiting is always the worst part. Especially when it comes to the girls. Ah, well, we are almost there.
On a side note, you should see my house...what a mess. For the last 3 weeks, all we have done is play with the girls or research online. Now with Mackenzie being sick...what a mess. I have a huge pile of puked on laundry and not a clean dish in the house. The carpets need cleaned now (thank you Mackenzie:) and I haven't cooked in a week. So hopefully, this time next week we will be back to normal and have a solid plan for Delaney.
Since this blog is Delaney's journey, I'd like to share her good times as well as her bad. In the last 3 weeks, she has started crawling really well, she can pull herself up to stand, and she is clapping her hands while singing and dancing. Here is a video of her standing and dancing and just being her wonderful self.
I will post more on Tuesday about Shriner's. Thanks to everyone who has called, emailed, offered help or thoughts and prayers. It means the world to us to know so many wonderful supportive people. We are truly blessed. Keep the prayers coming.
I am really looking forward to Monday, I just want to get this started and I need to feel like we are doing something for her. I feel like each day that passes her little spine could be getting worse. It is a terrible feeling to think you aren't helping your child. Waiting is always the worst part. Especially when it comes to the girls. Ah, well, we are almost there.
On a side note, you should see my house...what a mess. For the last 3 weeks, all we have done is play with the girls or research online. Now with Mackenzie being sick...what a mess. I have a huge pile of puked on laundry and not a clean dish in the house. The carpets need cleaned now (thank you Mackenzie:) and I haven't cooked in a week. So hopefully, this time next week we will be back to normal and have a solid plan for Delaney.
Since this blog is Delaney's journey, I'd like to share her good times as well as her bad. In the last 3 weeks, she has started crawling really well, she can pull herself up to stand, and she is clapping her hands while singing and dancing. Here is a video of her standing and dancing and just being her wonderful self.
I will post more on Tuesday about Shriner's. Thanks to everyone who has called, emailed, offered help or thoughts and prayers. It means the world to us to know so many wonderful supportive people. We are truly blessed. Keep the prayers coming.
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