Throughout Kennedy's hip treatments we have been fortunate to have Dr. Roy Rubin and his staff taking care of us. Since her diagnosis Dr. Rubin has been patient and understanding with our concerns and frustrations, answering all our questions - often several times. He thoroughly explains Kennedy's treatments & options, explores methods to reduce the radiation she's exposed to, is gentle with Kennedy's exams - she even likes him, is a perfectionist in surgery (gave us a great cast), is reassuring during treatments, and his apts even run on time and aren't rushed (often spending up to an hour). Even more amazing, Dr. Rubin is always available via home & cell phone as well as email! We couldn't be happier with our doctor!
Just as wonderful are Dr. Rubin's staff. The physician's assistants, Amy and Mike, are always helpful and really care - returning calls, answering questions and stopping in to visit Kennedy during our apts. Also, Dr. Rubin's schedulers, Megan and Katie, are very helpful and always enjoyable to talk with - providing us with information regarding procedures and appointments. We are truly lucky to have such wonderful and caring people helping Kennedy during her hip dysplasia journey. Thank you for your continued support!
http://www.roymrubinmd.com/about/
Sunday, March 8, 2009
Friday, March 6, 2009
Helpful Hip Sites
Throughout our hip journey I have come to depend on a number of sites for information and support. I hope these sites help you through this journey as they have helped me.
http://groups.yahoo.com/group/Hipbaby/
http://www.hip-baby.org/
http://babyhipwear.com/
http://www.cutelittlechurch.com/joyship/
http://www.freewebs.com/arymanth/
http://groups.yahoo.com/group/Hipbaby/
http://www.hip-baby.org/
http://babyhipwear.com/
http://www.cutelittlechurch.com/joyship/
http://www.freewebs.com/arymanth/
Post Op Procedures
With Kennedy, each of her procedures have been done as outpatient since we wanted to bring her home and make her comfortable. I really felt that staying in a hospital would freak her out and do more harm than good. Therefore, following each procedure, there are some requirements before we can leave. Although our experience has varied slightly with each time we are usually in recovery for about an hour - a little longer with the open reduction. The nurses monitor Kennedy's oxygen levels, blood pressure and breathing (listening to her through the stethoscope). She's usually hooked up to the IV until they feel she's hydrated enough and it's usually encouraged for her to eat something light - whether she nurses or has a bottle of apple juice. Also, during this time Dr. Rubin and the anesthesiologist brief me regarding how the procedure went, what to expect and when to call them. Overall, the post op procedures are fairly simple and we're out of there pretty quickly - thank goodness!
Going to Sleep!
Each time that Kennedy has been put under has been roughly the same experience. For her comfort and mine, I have accompanied her (and her ribbon blanket) to the operating room and participated in the process. With each procedure, I sit in a chair holding Kennedy while a gas mask is put tightly over her face. She has yet to enjoy this so I sing and talk to her while she cries into the mask. It usually takes about a minute or less for her to relax and fall asleep. We then transfer her onto the bed and I kiss her on the cheek.
*An important note here is that they will start the IV (& monitors) after you leave the room. First they will try to start an IV in the hands, then in the foot or the head (sometimes the dr prefers the head over the foot since the foot location can interfere w/ the casting). During the recasting and the open reduction we were lucky enough to have the IV in her hand and it was put in her foot during the closed reduction. This last time (for removing the cast) the IV was actually placed in her neck since other locations were proving difficult. However, as freaky as that was it's still preferable (in my opinion) to the head. During each procedure the possibility of having Kennedy's head shaved w/ an IV really freaked me out - she's got such great hair!
As a mother, it has been great to be involved as they're putting Kennedy to sleep. I've always coped with situations by trying to educate myself and attempting to understand what is happening (thank you internet). Therefore I find this involvement theraputic and reassuring. Despite it's emotional toll, I would recommend that you take this opportunity if it is offered.
*An important note here is that they will start the IV (& monitors) after you leave the room. First they will try to start an IV in the hands, then in the foot or the head (sometimes the dr prefers the head over the foot since the foot location can interfere w/ the casting). During the recasting and the open reduction we were lucky enough to have the IV in her hand and it was put in her foot during the closed reduction. This last time (for removing the cast) the IV was actually placed in her neck since other locations were proving difficult. However, as freaky as that was it's still preferable (in my opinion) to the head. During each procedure the possibility of having Kennedy's head shaved w/ an IV really freaked me out - she's got such great hair!
As a mother, it has been great to be involved as they're putting Kennedy to sleep. I've always coped with situations by trying to educate myself and attempting to understand what is happening (thank you internet). Therefore I find this involvement theraputic and reassuring. Despite it's emotional toll, I would recommend that you take this opportunity if it is offered.
Post Procedure Swelling
One thing I really wasn't prepared for with the closed or open reductions was the swelling and discoloration that is caused to the diaper area. With both procedures Kennedy experienced swelling to her genitals, especially after the open reduction. With these procedures you can expect for some swelling to occur, usually on the affected side, that can last (in my experience) up to a week. With Kennedy's closed reduction the swelling was mild and only lasted two to three days but the swelling from the open was much more significant, making diapering difficult for the first couple days. But, after four to five days the swelling resided and was almost gone by a week's end.
The first three to four days following the open reduction, Kennedy was so swollen that I was unable to stuff the inside diaper up the front opening. During this time I used panty liners to line the cast opening and, although I don't recommend using them regularly, they were a big help in protecting the cast by providing a barrier between the cast and her skin. Considering the diarrhea that Kennedy had post op, the panty liners were a real blessing the first week. So, although I discourage their use regularly they were helpful in avoiding disasters immediately following surgery.
The first three to four days following the open reduction, Kennedy was so swollen that I was unable to stuff the inside diaper up the front opening. During this time I used panty liners to line the cast opening and, although I don't recommend using them regularly, they were a big help in protecting the cast by providing a barrier between the cast and her skin. Considering the diarrhea that Kennedy had post op, the panty liners were a real blessing the first week. So, although I discourage their use regularly they were helpful in avoiding disasters immediately following surgery.
Open Reduction
Overall, our experience with Kennedy's open reduction was better than expected. First of all, the surgery was very long - about 6 hours from start to finish. Boy was that nerve-wracking! Kennedy's hip proved to be most uncooperative and actually fell out of socket during the first casting. Then Dr. Rubin wasn't happy with the second cast, so Kennedy had a total of three casts during that time. When she was out of surgery and in recovery Dr Rubin explained to us the difficulties of the procedure and how she may be facing a longer casting time or an additional cast after this. Then, I was able to go visit Kennedy and console her as she was waking. She really wasn't too uncomfortable or distressed as she was waking and we were able to leave about an hour & a half later. I will say I was so concerned about her being in pain that I was diligent about administering medication (Tylenol w/ Codeine) as guided for the first 3-4 days. Upon leaving the surgery center we rushed to Roseville Imaging for Kennedy's CAT scan which showed positive results for the hip's positioning.
The first couple days Kennedy was real tired - with the anesthesia slowing wearing off and under pain medication. She didn't appear to be uncomfortable during the day and was content as long as she was being held. However, first nights were pretty grueling. Despite how groggy Kennedy was she wouldn't actually sleep - just lightly rest. Therefore, I was unable to put her down and we spent the whole night with me holding her in the rocking chair. However, it slowly got better. During the first night I could only put her down for 15 minutes before she'd start crying but the second night improved to 30 minutes and the third night she was able to sleep on her own for a couple of hours. After that improvement I started reducing the Tylenol she was receiving, administering it mostly in the evenings and in preparation for night. My husband was absolutely wonderful during this time, caring for Kennedy in the evenings and mornings so I could get my sleep and be ready for whatever the night would bring.
By a week's end I would say that the swelling in the diaper region had gone down to almost normal and she was entirely off medication. Kennedy also adjusted well to being back in a cast and regained her happy disposition. Additionally, we were glad to pass through the experience without any infections or surgical complications.
The first couple days Kennedy was real tired - with the anesthesia slowing wearing off and under pain medication. She didn't appear to be uncomfortable during the day and was content as long as she was being held. However, first nights were pretty grueling. Despite how groggy Kennedy was she wouldn't actually sleep - just lightly rest. Therefore, I was unable to put her down and we spent the whole night with me holding her in the rocking chair. However, it slowly got better. During the first night I could only put her down for 15 minutes before she'd start crying but the second night improved to 30 minutes and the third night she was able to sleep on her own for a couple of hours. After that improvement I started reducing the Tylenol she was receiving, administering it mostly in the evenings and in preparation for night. My husband was absolutely wonderful during this time, caring for Kennedy in the evenings and mornings so I could get my sleep and be ready for whatever the night would bring.
By a week's end I would say that the swelling in the diaper region had gone down to almost normal and she was entirely off medication. Kennedy also adjusted well to being back in a cast and regained her happy disposition. Additionally, we were glad to pass through the experience without any infections or surgical complications.
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