So we brought Madi home on Saturday in the afternoon. She was glad to be leaving the hospital. She is so leery of medical professionals now that anytime anyone came in the room she would scream bloody murder. Upon leaving the hospital we decided to go get her prescriptions filled, one pain med, one for Valium and and antibiotic. So we go to the closest Walgreen's to our condo. Well they don't carry the pain med or the Valium. Nice! So we go on to a CVS pharmacy and they don't carry them either. While in the parking lot we call Target, Walmart, other Walgreen's etc... No one carries them! Call the hospital and they say they don't have an outpatient pharmacy. So long story short, finally found a Walgreen's that carried the pain med and said that they would call around and see if any other Walgreen's had the Valium. Meanwhile Madi is asleep in the car thank goodness! Finally get the prescriptions just in time to get home and get her the pain meds.
So later that evening around 8pm, Julia starts throwing up. She throws up all night long and all day long the next day. She can't keep anything down and is starting to look seriously dehydrated. So Sunday night my dad and I take Julia to the Emergency room while my mom stays with Madi. The doctor at the er decides to give her a shot of zofran and has her drink a little Gatorade and sends us home. As soon as we get home, she throws up again!! UUGGHH!! So we load her back up and take her back to the er. This time they decide to give her some iv fluids, which is what they probably should have done the first time! It took them 3 times to get the iv since she was so dehydrated. She was such a trooper. Mean while Madi is at the condo with my mom. She has been throwing huge fits of frustration and throws big fits when we try to give her the pain meds. Needless to say, my mom had a rough time. About 5am Monday morning we are taking Julia home, re hydrated and tired. Just in time to get a couple of hours of sleep and get up for Madi's appt with Dr. Paleys PA, Servando.
We get to Madi's appt and she starts throwing a fit as soon as we get to the room. Can't even tell you how bad the fit got when they had to saw the cast to remove it. I can only imagine how scary that must be for a two year old. Scares me a little. We get her out of her cast and Servando looks at her incision which he said is healing so well!! That is awesome. Showed us the pins in her knee, a little scary, but I just better get used to that. She fussed the whole time we were there. While he was examining her we noticed a small bulge on her lower abdomen. Since we had never seen it before he wanted us to see a pediatrician to make sure it wasn't a hernia. Seriously!!! This is just what a needed!!! I have one kid in a spica cast recovering from surgery, the other is having to go to the er from dehydration from vomiting so much and now there is the possibility of another surgery for a hernia!!! I am done!! Burst into tears at the mention of seeing a general surgeon. Servando assures me that he really doesn't think that's the case but just wants to be cautious and see what the other doctor says. Ok. Pediatrician examines her and say that it does not feel like a hernia and is most likely due to all the swelling in the area from surgery. Could just be a little fluid or swelling but nothing to worry about. WHEW!! Finally back to the condo and I am exhausted!! I am so ready to go home!!!
Just wanted to wish you and Madi the best of luck. YOur story brings back such memories. My son, Keagan, was born in October of 1998 with PFFD, left leg. His length descrepancy was estimated to be 18 to 20 cm at adult height. He had his superhip with Dr. Herzenberg and Paley when he was two, his first lengthening when he was 3 - turned 4 in the fixator, his second lengthening when he was 6, compled when he was 7. He just turned 12, and we are gearing up for another trip to Baltimore (we've stuck with Dr. Herzenberg) for a complicated knee procedure on November 9th. Through all this Keagan is an amazing child who can do anything. He downhill skis on expert slopes, despite a current two inch length difference (and he's a very small child for his age), swims, runs, hikes, etc. I expect that your adorable Madi will also let nothing stop her. Good luck with the spica cast. We learned a lot of tricks - use beanbag chairs, a mechanics creeper on the floor, and Keagan found a pivot point on his belly and would spin on the floor like a human top in his first spica (we've had three). Best wishes to you and your family - I hope all goes well for you in Florida!
ReplyDeleteSue and Keagan Walker - Juneau, Alaska
Hello
ReplyDeleteI am a moher of a 13-month-old girl who was born with pffd. While looking for some information about prosthesis I came across a blog about your daughter. My little girl is trying to walk on her own but without a proper prosthesis it is impossible. Doctors in Poland don’t know much about pffd therefore the prosthesis which they made is not the best and my baby can’t walk with it. I am in touch with dr Paley, however he only gave me theoretical information on how it should look like. I would be very grateful if you could help me and send some photographs of the prosthesis that your daughter has.
My email address: malgorzatapawlicka@wp.pl
Małgorzata Wieczorek