If you are an astute observer (or perhaps you are a subscriber and caught this post at the end of your email delivery!) you will realize that I am posting this about 2 months late. But like I always say – it’s my record keeping place!
Without further ado – our medical review of 2009(and the 6 weeks of 2008 that she was born for!):
- Days Spent Inpatient: 43 – 12 NICU, 2 PICU, 29 regular floor
- Ambulance Rides: 2
- ER Visits: 5
- Lab Draws: WAYYYY too many to count! She averaged 3-4 a month for most of 2009, some months were way more than that if she was inpatient, and for about 2 of the months she may have only had 1 or 2!
- Procedures/Surgeries: 6
- Other Testing: 20 (EEGs, EKGs, ECGs, KUBs, CXRs, MRI, VCUG, UGIs)
- Specialist Visits: ummmmm….I lost track after 25 or so.
- Doctors Currently Involved in her Care: 10
- Therapists Currently Involved in her Care: 8
I sincerely hope that our 2010 numbers are vastly reduced from many of these!
Her doctors:
- Pediatrician
- Pulmonologist
- GI (Gastroenterology) (we saw 7 different ones this year! Oy.)
- Immunology/Immunodeficiency (Immuno)
- Cardiology (heart issues)
- Nephrology (kidney issues)
- Neurology (brain-based issues)
- Audiology (hearing issues)
- Genetics (trying to figure out WHAT the problem is)
- Complex Care Pediatrician (to help coordinate this zoo!)
She receives 8 hours of therapy EVERY SINGLE WEEK. We get a lot of ” Oh but she looks so good! Look how much she can do!!!!” And yes, it IS amazing. But she never just wakes up with a new skill. She is very smart – but the message from her brain to her nerves and muscles definitely gets held up. Every thing she does was taught to her by being placed in the proper position and repeating and repeating and repeating a motion – even when she is crying from tiredness and frustration and just sheer exhaustion. We will hopefully be able to take a break from all the therapy for the summer without her losing too many skills or falling further behind. Right now she receives Physical Therapy, Developmental Therapy, Occupational Therapy, Speech/Feeding Therapy, Family Counseling (yes this is therapy! we all get involved!), Nutrition Therapy, and Aqua Therapy.
She also has almost 30 different diagnoses that she has racked up on our way to figuring out what the REAL one is! And just because its my blog and my record and I know that I am about to lose the piece of paper in my notebook that I keep them all written down on – I am going to transfer them to here! Some of these are just things she has dealt with at one time or another, some of them describe a chronic disease process, and some of them are just genetic “catch-alls” until we know WHY she has so many that still don’t explain everything!
- Transient Tachypnea of Newborn/Congenital Pneumonia
- Failure to Thrive/Poor Growth
- RSV
- Aspiration Pneumonia (times 8!)
- Urosepsis (Klebsiella Enterobacter – treated via 3 weeks of abx/PICC)
- Hypotonia
- Global Developmental Delay
- Proprioceptive Input Disorder
- Dysphagia
- Asthma/RAD
- Chronic Lung Disease/Bronchopulmonary Dysplasia
- Motor planning dysfunction
- Hypertelorism
- Dysmorphic Facies
- Patent Ductus Aretriosus (congenital heart defect)
- transient hypogammaglobulinemia
- FPIES (food protein intolerances enteropathy syndrome) – food allergies
- Intermittent DGE (delayed gastric emptying)/Gastroparesis
- Hiatal Hernia
- Left Aortic Arch/Aberrant Right Subclavian Artery (heart weirdness)
- Organic Acid abnormalities
- Chronic Metabolic Acidosis
- Specific Antibody Disease (immunodeficiency)
- Methylmalonic Acidemia
- Temperature Dysregulation/Instability
- Autonomic Dysfunction of unknown origin
- Transient Arrythmia
- Presumed coQ10 deficiency
- mitochondrial dysfunction of unknown origin
- OVERLOAD OF CUTENESS!!!!
Ok so I added that last one just to make it a nice even number. I am sure we’ll hit 30, if not 40 easily this year. For instance – she also has some kidney and pancreatic irregularities that no one has been able to pinpoint as actual diagnoses yet – but if they don’t go away soon, I am sure they will turn into their own line item.
Overall though – through all of this – she does pretty well on a day to day basis.
She is most affected in her GI tract (from swallowing problems to vomiting/retching, to not being able to vent air well, to not digesting certain foods, to not eliminating waste very effectively at all). The GI tract issues definitely impact us EVERY day. In some way or another. Next is her developmental delay due to the hypotonia/muscle issue (which is clearly affected by something else – metabolic?). She could not sit on her own until 10.5 months, could not bear weight on her legs on her own until 14 months, still doesn’t really “crawl” as much as she scoots around in a very uncoordinated fashion (causing other muscular problems like tightness and spine curving!). In essence we have a toddler who has the motor skills of a 9 month old. Thank God for the therapy!
She is also very affected in her lung/heart areas. We don’t know exactly what is the horse and what is the cart here – but because of the immuno issues (or lack thereof of an immune system!), she will pick up every bug floating around and have no defenses to fight it, so it ends up in her lungs, which eventually turns into pneumonia. If it’s not a bug causing it, it is aspiration from her inability to swallow well causing it. She is spot checked on her O2 “sat” (saturation) levels during the day, and is continuously monitored at nite. She typically keeps her sats up, but does so by raising her HR to crazy levels ( she can routinely have a HR above 160 while in a deep sleep if her sats start dropping). This tells us that her brain at least is doing its job – and does a lot to explain why she burns through calories like they are going out of style! She essentially circuit trains every nite – going from a low HR of 85 up to 185 and back down again and every level in between! But – it’s not an advisable way for babies to sleep, and we are hopeful that someone will be able to help us figure out how to help her sleep a little calmer at nite soon!
She will be good-good-good for days on end, and when stuff starts going downhill – its almost always some extremely strange random symptom that could be totally benign, or could signal impending metabolic failure.
She takes carnitine and miralax daily to help her overall energy levels and her GI tract try to find a happy medium, and we also have to give her a daily injection of 1ml of hydroxycobalamin into her muscle. I tell you the dose because until you have had to push 1 ml of something into someone’s muscle I don’t think you can grasp how painfully long it takes! Most diabetes needles (that I have ever seen, I am sure there are people out there who need more than 1 ml!) allow the person to inject increments of tenths of 1ml. It’s a quick short shot. Not these! She takes them like a trooper though. I know none of the other girls would endure half of what Kendall does without massive amounts of whining/bargaining/meltdowns.
So that’s that.
That’s life with Kendall Quinn from a medical viewpoint at the beginning of 2010 and a look back on all she’s gone through in 2009!
terra