Kendall recovered from the traumatic experience. And the same procedure under anesthesia is scheduled for this Thursday. I'm actually sick about it. We have to do it the facility where the Dr.'s office is. He doesn't apparently have any privileges at any of the children's hospitals. Imagine that. Our ophthalmologist's office even got involved trying to schedule with them so she would only have to go under anesthesia once. He wasn't having it. I'm not surprised that he doesn't play well with others...
I'm going to put her in God's hands and go with the flow. But it sure does make me nervous not to have a pre-op or pediatric anesthesiologist. They have no idea what they're in for.
I may sound slightly calloused, but really what the hell am I supposed to do? This is our only option. Everyone I have talked to says the same thing. This guy is the worst with kids and parents, but world renowned. Whatever. I just can't wait for him to try and make my 6'5" husband upset. Justin's very slow to anger....but the one time I did see him angry, it was because somebody messed with his little girl.
In other news, Kendall has a video EEG scheduled next week, and an examination under anesthesia for her eyes the week after that.
And believe it or not, she's been sleeping with that darn wedge every night for at least six hours. Baby steps.
Kamden may or may not be testing for his black belt this weekend. He's worked his little butt off, but we won't know for sure until Friday night. He has to break boards in class on Thursday. I'm full of anxiety about all that too!
We went to do the urodynamic testing today. The Dr. (the neuro urologist) was a nightmare. He had the absolute worst bedside manner. We see a lot of specialists, and this one was by far the absolute worst. Some of his ridiculous comments included...calling Kendall "mentally retarded," and telling me to work on my "frazzle level" and "lowering my standards for her care." I couldn't even do his horridness justice by telling you, but let's just say it was bad. Really, really bad.
They took her back to the procedure room where her home health nurse and I held her down and a sensor with needles was placed in her rectum. From there, these nurses who "do this all the time" (but apparently not frequently on young three and a half year old girls) proceeded to attempt over three times to cath her. We didn't even make it to the part where they injected the dye for the test because she pushed out the catheter when they were finished taking out her urine. In the room, the nurses informed me that they can do this under anesthesia. They warned me that there was also the possibility of putting her through all this and the test result still not being read properly because of all the movement. Kendall was screaming in agony, and I made the call to stop.
Our appointment with our urologist was cancelled by them and we were given instructions to schedule the procedure at the same facility under anesthesia. The Dr. ran her urine and told me she didn't have a UTI, and then followed me out to the check out lobby where he made me cry again talking about how I need to take care of myself first if I'm going to be expected to take care of my child.
I guess in his eyes I'm a basketcase.
But he also doesn't know that I've never cried in front of one of Kendall's Dr.'s before. Ok, maybe I have, but not in a long time. I don't lose my composure easily anymore. I had just spent an ungodly amount of time holding her hands while she screamed and writhed in pain. I wasn't prepared to get the speech about how "God has a plan for my daughter," or the part about how "she has a lifetime of issues that will require me to face tough situations." Especially from a pompous Dr. who specializes in old lady incontinence.
Problem is, he's the only one around. And supposedly the best.
But he doesn't have the ability to put a kid under anesthesia at our beloved Cook Children's Hospital. They don't even have his role at the hospital...so our hands are tied. She needs the test, and we have to do it.
I guess between you, me, and the fencepost, the most upsetting thing about this whole ordeal is this: Because Kendall is considered delayed, and has a label of CP, and lots of other things, they didn't treat her like a typical three and a half year old girl. They attempted to do this procedure on her while she was wide awake. Completely aware of what was going on. (She clenched on to her nurse's arm as she tried to put her down on the table, clearly petrified.) And it took me close to 20 minutes to stop them.
So now we wait to schedule it under anesthesia. More waiting, and more worry.
ps: I actually shortened this post A LOT. I really wanted to go into more detail, but I'm working on my frazzle level.
We had Kendall's appointment with her orthopedic Dr. yesterday afternoon. They took a few more x-rays and delivered the news: she does in fact have bilateral hip subluxation. When she's on her back with her knees out, her hips go back in socket. When she has her legs straight out, they are a little over 50% subluxed.
Her spine is fine. No scoliosis.
We will begin botox next month. She will sleep with a wedge. Hopefully this will help, but it won't fix the problem. Muscle surgery (and the body casting for 6 weeks after) will likely happen for Kendall sooner rather than later. I am investigating (aka...utilizing my global resources!) different hospitals, procedures, and options just to make sure we make the right decision. Again, I wasn't ready to cross this road so early, but we play the cards we're dealt. If any of you have experience with this, I welcome your input!
Her urodynamic testing was scheduled for February 29. That was the earliest appointment they had. I don't usually accept the first answer I'm given, so I called back twice to see if there were cancellations...despite the nurse's first answer of don't call us, we'll call you from the cancellation list! Fortunately, there was a cancellation and my persistence paid off. She's now having the test next Thursday with the neuro urologist (who knew that guy existed?) and a follow up that afternoon with her urologist. From there we will make further decisions.
So, that's the latest. I'm still pretty emotional about it all, but since I've been super busy, I haven't really thought much about it.
Tomorrow I am going to a meeting at Kendall's school to learn the second device in our trial. It's a PRC with Minspeak. (insert my squeals of joy here) I'm excited that there's now a plan in place. She should have her own device by Spring Break, and there is training already in place for all that interact with Kendall.
January is plugging along. I only had three fits in the pharmacy line this month, so the year's off to a good start.
Sunday evening we were trying to get Kendall to eat orange slices by herself. She can do it. She self feeds for a lot of people at school, but rarely for us at home! It's way too easy to have Justin or me put the food in her mouth :)
So Justin placed the oranges on the tray and walked away. Then we peeked around the corner and Justin was able to catch her doing this! About 45 seconds into it, she sees the camera, but by then was enjoying the flavor too much to stop...
The video should turn itself upright when you hit play. I put music in the background to spare you the panting dogs beneath her tray just waiting for her to drop a slice.
Wouldn't you know after last night's amazing news, there was a series of bad news to follow? That's the cycle my life takes. And this one's pretty ironic.
I've gone back and forth on all of this. I haven't called anyone in my family yet to share the news, because I just don't want to have to tell the story more than once. And I do better processing information when I write it down. I don't want to upset anyone with the details or what-if's, but I've decided to share because it can go a number of ways, and I want it to go only one way.
We had a Urology appointment today. It was a follow up to her latest kidney ultrasound and kidney, urethra, bladder x-ray. I went in there thinking maybe we would leave with a diagnosis of chronic urinary tract infections, and start Bactrum daily to prevent them in the future.
Unfortunately, the images showed more than that. They showed that she has bilateral hip subluxation. I wasn't prepared for that since her therapist hasn't noticed it, and when I asked our neuro a while back if we needed to see an orthopedic Dr., he said not yet. I know with severe cerebral palsy, it is inevitable and she will at some point need hip surgery, but just not now. I'm talking with our Neurologist in the spacticity clinic to make sure he sees the latest x-ray and still feels the same way. I'm not ready to deal with bone and joint issues yet. Obviously, the Urologist was obligated to mention an orthopedic referral...but I'm not scheduling it until someone else tells me too!
Unfortunately, the images showed even more than that. They showed major constipation (which caught me off guard because she goes daily with the help of miralax, and pediasure with fiber) They also showed swelling in her kidneys, and a very, very, full bladder. (again a shock to me since she has regular wet diapers.) There is concern that her kidneys are being affected by the urinary tract infections. Which would explain the blood in her urine, and previous kidney ultrasounds showing edema. The thought is that she holds on to her urine and it grows bacteria (think baggie of water setting overtime.) She has had the VCIG performed before, so we know she doesn't have reflux. But this isn't caused from reflux.
He's ordered a urodynamic test and I'm waiting to hear back for that to be scheduled. Basically, it is a contrast study that through a catheter fills her bladder with dye and we watch to see what happens to it. Does she pee it out immediately, or does it (because of the pressure of such a full bladder) go back up into her kidneys? The prayer I'm asking you all to pray is that she pees it out and everything is fine. And it ends there.
If it is abnormal, we have decisions to make. I wasn't going to go here, but for the sake of documentation, I will.
We will have to decide between two undesirable choices. She will either have to be catheterized every four hours, or we will have to have a surgery that gives her a vesicostomy. Not sure if that's the right word...but where they do a procedure that through a tube she will involuntarily release urine into a diaper (or a bag.) She then loses the ability to feel the urge to go, therefore will always have it and not urinate on her own.
This is all for the sake of keeping her kidneys healthy. Without healthy kidneys, you can't grow and develop, and as a type one diabetic...again, we need strong, healthy, kidneys. She already has a lot of strikes against her.
I wish with all my heart that I could take this for face value. That I could say, OK, she has this problem, it will be fixed, it's inevitable with a child with Cerebral Palsy (kinda like the hip thing.) But I can't. Because I asked him if that was the case and he said no. He sees a lot of children with CP or brain injuries and they don't have this. He does see it a lot with kids with spinal injuries (or SB) and they do have this problem....it's common in those kiddos. But not usually with brain injuries.
So that takes my brain to the other place. Could it be the inconclusive muscle biopsy? The one where they lost the specimen and needed more in order to test her respiratory chain mitochondria? Is this nasty progressive Mito monster going to grab my baby girl up and start wreaking more havoc on her already damaged body? Is it attacking that next system? Sure looks like it on paper to a lot of Dr.'s (except our metabolic geneticist!) She has had problems with pretty much every system. Now we are adding more. It literally makes me sick to my stomach. Makes me cry. And makes me very, very angry.
But I do believe God answers prayers. So, I'm asking for yours now. Please, please pray that those latest tests were because she had a UTI with no cause. That she had a full bladder because she didn't want to pee because it hurt. That the test won't show something major that causes us to have to put her through more stuff...or do another muscle biopsy.
The very same day I received notice that Kendall won't get diapers covered anymore until she turns four, my sweet girl did this:
I'll spare you the after picture that this proud mama sent all her friends via text message, but lets just say she went both number one and number two in the potty after signing to her Daddy that she had to go.
A bathroom remodel is in our future, and I'm thrilled that we now have to take into consideration the location and accessiblity of her potty, not just her bath.
Ending my crazy day with such an accomplishment from Kendall, makes it all worthwhile! I know all of the hard work involved in raising her is not in vain. Little things like this keep you moving, and I can't wait for her to do it again today!
2011 went out with a bang. Sick kids for two solid weeks through Christmas break isn't fun, but we made the most of it!
But we're over it now. Everyone is on the mend. Both kids went back to school today and are back to their old selves again. Christmas is put away, and I've been purging junk drawers like a champ. I still have a couple more weeks until my school starts again. My course load is going to be tough, but I'm getting closer to my goal, so I'll plug on through!
I'm not usually big on New Year's Resolutions...but this year I'm making one. I'm going to stop apologizing when I'm fighting for my kids. Reality is, we are all just trying to get through life. But if your personal life results in you not following through on what you say you're going to do, and my kid suffers....I'm done with you. Done.
Beginning today, Kamden starts training for his black belt. To say I'm proud of him is an understatement. He's stuck with Karate, gone when he didn't want to go, and proven to me that he has the stick-to-it-iveness not to quit something he's started. That makes me proud. With that said, his schedule is going to be tough these next six weeks. Between guitar on Monday's, drama club on Tuesday's, and karate 5 days a week (yes...5!) plus schoolwork, it seems like a lot. He has a lot of work ahead of him! But he says he's determined and can do anything for six weeks. I just hope I can!
Kendall did end up returning to the ER last week. She was satting in the high 80's, low 90's, so we took her in. We've done some tweaking to her breathing treatments, and it seems to have worked. While there, we did discover another UTI, so I FINALLY took her back to the Urologist. We're not new to the whole UTI business. We're very used to discovering one, starting an antibiotic, switching antibiotics when the cultures come back in...blah blah blah. But today we did get some answers. She has blood in her urine again, so another bladder ultrasound and x-ray was ordered. Could be constipation, could be more kidney related, so we are also going to go back to the Nephrologist. A few months back I stopped going after they ordered an IMBG scan for high metanepharines. I felt that was a wild goose chase, and I wasn't prepared to go down that road. But, I will swallow my pride and go back to see what's going on with her kidneys. A type one diabetic at 14 months old wouldn't hurt to be followed by a Nephrologist, I suppose.
January's calendar is filling up fast. At least we'll hit our family deductible early in the year...
We are very open about our journey with Kendall. We're happy to answer any questions, and welcome all your comments! The one thing we don't want is to be isolated from our friends and family. I've been that person who thinks it is easier to just ignore a child with special needs and their family. I've feared hearing their story. I've been guilty of looking through a child with special needs. I've also thought and said "how on earth do you deal everyday?" Although it certainly isn't easy, we are a normal family...celebrating all the milestones our daughter hits (and maybe cheering a little louder in the process!) Let me tell you...it's been a long road with many bumps but the love and support we receive daily is what keeps us truckin'! Click here for the full story on our precious baby girl Kendall Ann, or scroll down for the quick recap! Thanks for visiting!
more music please!
clearly before keto diet and diabetes
Kendall Ann has blessed our lives in so many ways. She is truly a gift from God and has proven herself to be a fighter from the beginning. She was born with many neurological and optical abnormalities, which we now know is due to a stroke in utero...probably due to her Factor V Leiden mutation and two copies of the MTHFR gene (1-14-09).Oh, and NOW she has Type 1 Diabetes (8-19-09) And NOW (12-16-10) she has problems with her Mitochondria ... and NOW (2-11-13) a neurogenic bladder resulting in a vesicostomy. Of course there is apossibility of a Mitochondrial Disorder, and a possibility CDLK5 caused all the problems and Mito secondary...but we will never know, because we've decided no more testing! When she was born she came right home...no NICU stay...and we had no idea anything was wrong! She has undergone numerous hospital stays and a number of surgeries, but through it all, she has maintained a smile that wins the hearts of everyone who meets her. Please join us in our journey of life with a special little girl full of spunk and personality who happens to have multiple disabilities.
I like to say I'm a party- girl-turned-career-girl-turned-stay-at-home-mom to a son who's gifted and talented, and a daughter with special needs. My hubby levels me out, and I'm a lucky girl to have found him.(I kissed a lot of frogs!)
I love my life and all it's chaos. My family and close knit group of friends help me get through every day! I'm getting better accepting that God's plan isn't always my plan...and alcohol sometimes helps :)