Sunday, December 23, 2012


I apologize for not posting earlier. Sometimes it slips my mind to update the blog when I update Facebook. Waverly came home on Thursday afternoon! We are so thankful to have her home and she's doing much better. We are still being very aggressive with breathing treatments and keeping her in. She finished her antibiotic and other meds. We've been having issues with her crying a lot and being irritable, but other times she is very smiley and happy. I think it's neurological, given her twitching and such that goes along with it. She's also got several canine teeth and a couple of molars coming through so that could be contributing to it as well.

Enjoy these pictures from the day she came home!

Tuesday, December 18, 2012

Even more pics

Feeling very sick, feeling better, on bipap.

More pics

Bed head, sweet baby face, and sweet eyes.

Hospital pics

The day she came in and cuddles with my baby.

Still inpatient

Waverly has made some progress the past several days but she is still requiring high flow heated oxygen and therefore is still in patient. She's gone from being at 100% oxygen at 4 liters to now at 40% at 3 liters. But she still has some progress to make. She has been much happier the past two days, but almost to her "manic" phase again where she just can't seem to settle down, which leads to lots of crying at night.

We've also tried her on the bipap today while here. She did ok on that at first but then got really agitated and had to stop that and go back on the high flow oxygen.

Please continue to pray that her lungs clear up. She still has a visible (via X-ray) mucous plug hanging on and an increased need for oxygen. Pray that her brain will settle out and let her rest.

I am feeling a little better. Please continue to pray for strength and health for us. I am terribly anxious about all the sickness around here (lots of patients with the flu), and about the exposure that we are getting, as well as Waverly. Please pray for our older kids also. My oldest in particular was really sad tonight and cried when I had to leave her at home to come back to spend the night with Waverly. It breaks my heart and I hate that our family is split up. I am also trying to balance my full time job on top of it all and honestly, I am just so tired. I keep thinking that if I can just make it through this week then that will be good. I'll have a whole week off to spend with my family. We really need that time together. I feel uncertain right now as to an expected discharge date. I was hoping within the next day or two but she is being slow to let go of this high flow oxygen so I'm not sure.

Friday, December 14, 2012


Waverly has her first pneumonia...

On Thursday she woke up with a fever.  It came down with Motrin, but that evening she spiked another fever, close to 103!  Amazingly she didn't seize with it.  We gave her more Motrin, and she drifted off to sleep, but woke up a couple of hours later coughing a choking and burning hot with fever, and it was rising really fast.  It got close to 104, and she was shivering and struggling to breathe, so we prepared quickly to take her to the ER.  She then had an apnic/non-breathing seizure, and given the way she was looking with her shaking and coloring being really bad, we called 911 to get an ambulance to take her in.  That was around midnight.  We spent the night in the ER getting her stabilized and getting tests done (blood, urine, chest x-ray, etc.) and they confirmed shortly after that she has pneumonia.  It took a while for her fever to come down even with being treated here, but finally this morning it started to respond to medication.  She's now on IV antibiotics, fluids, aggressive breathing treatments, etc.  She will probably be in for several days, but already she is looking better.  She's been sleeping most of the day, and we're hoping she sleeps well for the night too. I've not been feeling well (have a cold or something I've been fighting), and after two weeks of not sleeping much due to her illness and being up all night with her in the ER, I am feeling it.  So please pray also that I can rest some and that my body will be strong to help Waverly be strong.  Thanks for the prayers!

Tuesday, December 11, 2012

Still Sick...

So Waverly has been hanging on to this sickness since my last post.  It's almost been two weeks now.  Still lots of coughing, secretions, some sneezing, etc.  Her fever only lasted a few days, and she hasn't had one since.  The seizures are better too, although she's had some times of seeming just neurologically agitated.  But we've seen a few smiles here and there too, so that's good!  So, it's been almost two weeks now of lots of extra care, even for her.  We've been very aggressive with breathing treatments every 3-4 hours including nebulizer with albuterol, saline, or pulmicort, vest treatments, and cough assist machine (a new machine).  There's also lots of suctioning after all that, plus anytime she coughs or sneezes.  She's not sleeping very well, so we've also been having to get up a good bit to suction her throughout the night, especially starting around 4a.m. after she's been laying down for a several hours through the night.  We're often up with her for several hours from that time on (which often means up for the day for whoever is up with her). She's also been on oxygen pretty much 24/7 for these past 12 days, ranging anywhere from 1/2 liter to 3 liters.  She also finished a course of antibiotics and is on a 5-day course of prednisone to try to help with the lung congestion too.

For about a week now she's been holding steady.  She's not getting any better, but she's not getting any worse wither.  So, we've just been keeping her at home, watching her closely, lots of care, and waiting for improvement.  We took her today for a chest x-ray just to be safe, and they said it looked ok.  So, there's the latest update.  We're praying that she can kick this bug soon and be all the way better soon!

Sunday, December 2, 2012

Change of Plans-x2

I realize I have been terrible to update these past few weeks.  I'll blame it on a baby who has thrown all kinds of things at us, a full time job, a bout with appendicitis, two older kids (who are still really quite young and needy), and just daily life. 

My last update was 2 weeks ago, when we started her on Ketocal.  That very day, maybe by coincidence since she woke up this way, she was a different kid.  Super smiley, cooing lots, not sleepy, etc.  She was so cute and fun!  However, it was almost too much...she couldn't nap at all during the day, and by the time the evening came she just cried and cried because she couldn't sleep at night either.  This went on for 3 full days, until finally, that third night, in the wee hours of the morning, I gave her her seizure rescue med diastat, in hopes of helping sedate her and break the brain wave pattern that was causing her to not be able to rest.  After about an hour, it worked, and since then she's been somewhere in the middle: not as many Infantile Spasms (Praise God!), smiley during the day, but still able to sleep when she needs to (for naps and at night). 

We have noticed an improvement in her IS too, which is great.  So the plan was to have her slowly starting on the Ketogenic diet here at home for two weeks, and go to DC to get her up to full strength the week of December 3. 

Well, last Thursday she started coughing and coughing.  Then came the secretions and fever.  Then the seizures.  And she's been a very sick little girl since then.  So, plans have once again changed, and we are not going to DC now.  We feel she is too sick to make the trip.  So far, we've managed to keep her home and out of the hospital, but I feel like she is still on the brink of having to be admitted here locally if she doesn't improve. 

So, that's where we're at.  It's quite frustrating and stressful to have plans keep changing continually.  And also hard to keep everyone informed and to keep from getting confused!  I'm not sure what the plan is at this point, but hopefully I will update when we figure it all out.  In the meantime, you can pray that she will be restored to health, that she can avoid having to go to the hospital, and that we can continue to see an improvement in her seizures (once she gets over this sickness).