As you may have heard, we are home! We were finally released from PCH on Wednesday March 17th - St. Patrick's Day! We are hoping for more than luck...we are hoping to help Kinzie start healing and to feel safe at home rather than being poked and prodded at the hospital. So far, pretty good. We were released basically because the hospital had done all that they can do for her at this point. Her UTI was gone and we still can not find anymore info regarding her unique movements so home we went.

I am trying to keep her to a schedule and run a household with a two year old but her schedules are rarely together or on time. I have to cathe her every 6 hours to alleviate the urine retention and feed her every 3-4 hours or when she decides she is hungry, and remember morning meds vs. evening meds. Since home, Kinzie has actually not done any of her head turning/facial droops that she did in the hospital. however, she does a different one that is just as scary for us. She gets rigid everywhere and frozen like that for seconds and at the same time thrusts her tongue out over and over. I know they sound like seizures but 8 EEGs told us they are not. So we wait and pray that they are not huring her. I'm hoping it's just part of the neurological irritability that she has and that her brain is figuring out how to root when hungry. Don't know.

She has also had a couple random days of wanting to eat but not able to keep it down. Then we go back to a couple normal days of eating and keeping it down. In short, we can't seem to get a routine yet. Every day is different and lots different.

We are currently headed back to the valley on April 6th for urology, neurology, and GI follow-ups as well as the urodynamic testing that we are hoping will explain the sudden onset of the urine retention.

I know I am way behind on pics so I will get to that soon. Just wanted to let you know that we are home and doing good so far. We saw the pediatrician soon after getting home and she is in the 54% for weight and 44% for height. We are still modifiying her sodium supplement as her levels remain a little low, which means 2 pokes so far to test her levels in her blood. It continually amazes me how resilient she is but I also have to remind myself that I would sleep as much as she does if I'd had the start she did. We hope to get her more awake in the next few weeks. Hopefully our appointments with Occupational Therapy will help.

New Theory

Well, here is the latest theory and information. Kinzie possibly has a neurogenic bladder meaning that the neurons telling the muscles to contract are damaged. However, those neurons are located in the tail of the spinal cord and after a spinal ultrasound and spinal MRI we have found hers to be completely normal! Thank goodness. So where the damage would be from, we are not sure. Hopefully, urology can tell us where and/or if she even really has a neurogenic bladder on Monday. Her urine output was slowly increasing the last two days but is again low. We are currently wondering if her episodes are related to a distended bladder but after cathing her today immediately after an episode we found it to be moderately full. Urology wants to do testing after discharge. I'm trying to get them to do it before we leave to save us a trip back down. Makes sense to me!

Kinzie is hanging in there. She has been a little fussy these last couple days but is really a pretty quiet baby. She is waking up more and more, at least her eyes are more open. She has always been alert but with her eyes closed or peeking. We will test her eyes at 6 months to see how well she sees and focuses.

I have pictures to post but will have to do it later. Gotta run to feed her.
Thanks to everyone for your thoughts and prayers.

Frustration

I am not sure what to think when your most favorite doctors and NP's say "We just don't know. Kinzie is a mystery," and "Kinzie, you sure make me feel that I'm not very smart." I'm so frustrated I could scream! I keep thinking "Ok, this makes sense. All the symptoms point to this. The test should come back positive." And then, it comes back negative or something totally random and different comes back positive, like the UTI.

The PH Probe test came back today and showed that her "episodes" do not correlate to reflux. The test did show that she has some reflux but not the severe reflux that we have felt to be the one constant in all of this mess. So, you know as much as we do. We are now back to ground zero, well, more like ground 1 or 2 since we do have some positives like:

1. Decrease in desat episodes and none all weekend.

2. She can manage her secretions and reflux and keep from throwing up most of the time.

3. Seems to be feeling better today after time on the anti-biotic.

4. Ate much better today, 3 full feeds out of 4 on the day shift.

5. Manages own temperature.

We are currently working on getting wet diapers. She's never had a problem with this but even now after being on the meds all weekend she is still having low urine output. She has always been a little heat rock and sweats like crazy so we have now brought in the Nephtology (sp?) doctors that check the kidneys. They seems to think that the kidneys are fine and that her low urine output is due to her getting rid of water other ways: sweat, spit, breathing. But then how do you explain great urine output with the same sweating for the first 5 weeks as opposed to this 1 last week. You guessed it...more testing.

To be continued...

UTI

Oh the dreaded UTI. I actually haven't had one since I was like 5 years old but I've heard from plenty of people just how painful they are and how miserable you feel. Thus, no wonder Kinzie stopped peeing, stopped eating, and started throwing up (that could just be the reflux though). She is finally starting to be less irritable when awake but still sleeping a lot and hestitant to eat much. She is averaging 50cc now, almost back up to the full 80cc. Her anti-biotic is over on Thursday so we are just helping her be comfortable and start eating again and biding our time. Hopefully we are coming home Sunday if all goes well this week. We still haven't heard back on the PH Probe for the acidity level of her tummy but should tomorrow.

Departure Delayed

These days I feel as if in an airport...delayed departures time after time... after time. Need I say more, we are not coming home this weekend. Kinzie is getting better at recovering from her episodes. She rarely goes apnec, or bradycardic now and if she does, recovers herself without needing the o2 bag. She also is getting better at keeping her reflux from coming up. It is still extremely painful and still not quite making complete sense. GI got involved today and did an Upper GI test. It came back normal meaning all structures are working correctly. Tomorrow we are doing a PH test to test the acidity of her tummy. We are hoping it shows something as it would be an easy fix. We were still scheduled for coming home Sunday with all of that pending until she quit having voids today. She went 9 hours without any wet diapers and finally had to be cathed again. It is still showing very little out put which is strange because she is still doing great with the bottle and taking all feeds PO (by mouth). Her liver enzymes are also slightly elevated again so we are again delayed and testing, testing, testing.

My heart breaks everytime something else has to be done. She handles it pretty well actually and just closes her eyes and sucks on her pacifier. My job is to talk to her and drop sucrose drops on her pacifier. She is so strong to simply endure without understanding why things are being done. I at least get to benefit from hearing the explanations. They mean nothing to her though and yet she continues to smile and coo.