Update on day #5 in hospital

Just wanted to give everyone an update on Luella. We are still in the hospital and will be for at least another day or two. She is doing better. A little more alert and playful, but still quite tired and wanting to nap often. She can go most of the day without added oxygen but still needs it to sleep. Today for some reason she is needing a little more O2 than yesterday. She did finally eat a little bit yesterday and a little at lunch and supper today but it is still a struggle. I had to bribe her today with little segments of Elmo's World for each bite she took!

Luella has had a couple sessions with a respiratory therapist working to get her to use her lungs. Luella really enjoys blowing the bubbles!

I'm thankful that Jim has been able to be here to help some of the time. And so thankful to those who have been helping with the other kids!!

We appreciate all the thoughts and prayers from everyone. If you are in the area and want to visit, just email me and I'll give you details.

Update on Hospital Stay

Luella has tested positive for RSV, they think she may have pneumonia too or it might just be the RSV showing up on the chest x-ray. They are treating her for the pneumonia as a precaution. Like Jim said we are at the Castle in Sioux Falls after getting transferred here from Luverne about 1am on Sunday. Luella was having a hard time keeping her oxygen levels up. At home on Saturday afternoon her oxygen level was dropping to 83% during her nap (normal would be 90-100%). At the hospital in Luverne it dropped to 77% and the doctor felt she needed to be here.

Things have improved some. They took the oxygen off for awhile today and she was doing pretty well for awhile on her own but now she is needing oxygen again tonight. She has a terrible cough and is very lethargic and sleeps a lot. And unfortunately isn't eating at all. She is on IV fluids and they aren't too concerned with her not eating yet, but she will need to make some improvements there and with her oxygen levels before they will consider letting her leave. We might be here a while. Thankfully she hasn't had any seizures because of this!! That is a HUGE relief and we hope that will hold true! I'm just hoping she perks up a little bit here and will play some.

She has been handling all of this really well. Several nurses have commented on how good she is. When they are needing to retape and fix her IV she just holds her hand out so nicely and waits! When they scan her bracelet for her meds she holds her arm up on her own!

Jim was able to be with Luella most of the day today so I could get away. I had a terrible headache all last night and this morning. I was so nauseous that I vomited this morning - holding Luella in one arm and vomit bag in the other!! NOT FUN! I didn't have my headache meds with me here so when Jim got here this morning I took my meds and slept for two hours. I felt well enough to drive then and I was able to go home for awhile and shower and repack my bag for the stay here.

If anyone would like to call or visit please email me for information. I'll try to have Jim check my email.

We would appreciate everyone's continued prayers for Luella. Thank you so much!

Luella has Pneumonia

Jim's first blog update.  Instead of waiting for Heather to post I wanted to get this out there ASAP so that people can start praying for Luella again.

Luella was admitted to the hospital Saturday (25FEB2012) with pneumonia.  At about 12:30AM Sunday they decided they weren't comfortable treating Luella here so Heather and Luella were transferred by ambulance (instead of helicopter for a change) to Sioux Falls.  Please keep Luella in your prayers (and Heather too, comforting a sick 2 year old in the hospital isn't easy).

Early morning seizure (Tuesday)

Luella had another seizure early on Tuesday morning. I woke up at 6:10 and I thought I heard her yawn. I figured she was awake and would soon hear her say "wake up", but she was quiet so I didn’t go get her.  At 6:27AM Luella's pulse-ox monitor started alarming. I went in to see her oxygen levels in the 80% range while her heart rate was normal. I looked in her crib and she was on her tummy and having a seizure.  Her oxygen quickly dropped into the 70s. Jim came right in with her meds and as I was about to give her midazolam (her rescue med), she stopped seizing.  Even after the seizure she had a hard time keeping her O2 up so we gave her O2 until she could keep it up herself. I'm so thankful we have all the tools we need at home to help her if she needs it. I feel like we run to the ER a lot anyway, but at least these things help us avoid that some of the time.
 
She did have a fever of 99.7. Unfortunately all the kids have had a touch of some virus and had cold symptoms and fevers. I was hoping to keep it away from Luella, but Sunday night it hit her.
 
I'm really upset with myself that I didn't check on her sooner when I heard her make a noise at 6:10. We don’t know if the alarm sounded immediately when the seizure started or if she seized awhile before her O2 dropped. I felt in the crib and there was a large wet spot where her head was - she drools / foams at the mouth during a seizure so that made me think maybe she seized longer than the alarm sounding. Hard to know for sure. Since she does have a cold she may have been breathing through her mouth and drooling in her sleep. Jim tries to keep me thinking positive! I'm just thankful that everything turned out okay!
 
We are still in a balancing act of figuring out the right amounts of medication and really what medication is best. We've been trying to eliminate her sleeping twitches and jerks and, while it is improving some, they are not gone and we are starting to see some of the negative side effects returning - a little more tired and cranky. We did one more increase of the stiripentol last night so we'll have to wait a week or so to see how this increase affects her. Ideally we'd like to find a medication that would give us good seizure control even when she is sick.
 
I know so many are praying for Luella and our family, but I want to thank my Coffee Break friends for the special prayer for Luella yesterday and for your continued support for me. I think that I'm handling all of this fine and then at times it hits me and I just break down. It's a bit of an emotional roller coaster! We talked about the power of prayer yesterday and I'm so hopeful that someday Luella will be cured of this awful disease! Thank you all for your continued prayers!!

Another seizure - Ear Infection!

Luella had another seizure tonight around 7:30. I gave her two doses of Midazolam intramuscularly (with a needle) and it did not stop the seizure so Jim rushed her to the ER. The seizure did end up stopping shortly after getting to the ER. Jim said they were pretty sure it was done but when Luella started singing "Twinkle Twinkle Little Star" in her tiny little voice with her eyes still closed he knew she was okay. At the ER they found that she has an ear infection. I had just taken her in on Friday to get checked out - just to make sure she didn't have an ear infection or strep or something. She hasn't been sleeping well again after having almost a week of really good sleep so we wanted to make sure there wasn't something else going on. At that time her ears were okay. :( It would have been nice to catch it before a seizure... but short of taking her to the doctor daily I guess there is no way to always catch things before a seizure strikes.

I mentioned Luella's bad nights of sleep again lately... Last weekend I held Luella during church and she slept for about 30 minutes and during those 30 minutes she twitched and jerked quite a bit. We haven't seen any twitching for quite some time. Last summer and fall it was bad but then the twitches went away with some of the new drugs she started. Now it has started again. :( I really hate feeling her twitch and jerk! All the twitches are really affecting her sleep. She doesn't even want to be in her crib. I have to rock her to sleep to even have a chance of laying her down or she just screams.

We are looking to make some more medication changes again to see if we can eliminate the twitches without losing all the progress we've made in other areas (eating, balance, her mood, etc..). And speaking of eating, Luella was weighed on Friday and she has gained a pound back!!! She isn't eating "normally" yet but she is eating MUCH better!!

Please pray that these sleeping twitches and jerks will go away!!! And that Luella can get a peaceful and restful night's sleep once again!  (And mommy and daddy can sleep too!) Thanks everyone!

Seizure at the Pool Tonight

Well, we were one day shy of hitting 13 weeks without a seizure... We took all the kids swimming tonight and Luella was SO excited to be in the water! She is like a fish in the bathtub so I knew she would enjoy the pool. She just giggled and smiled from ear to ear! She loved it! Then 15 minutes later she had a seizure. :( I gave her midazolam (her seizure rescue med) and it worked more quickly than we've seen it work in the past. The seizure stopped and she slept for about 30 minutes while I held her and watched Jim and the kids swim a little longer. When Luella woke up she was groggy but still wanted to get back in the water. I was a little nervous about putting her back in the water and it was about time to leave anyway so we just decided to go. Once we got everyone home again Luella was basically back to her normal self.

We aren't sure what triggered this seizure. The past several months she has only had a seizure when she was sick (UTI, Strep, etc..). Luella actually did have a UTI last week. We found out on Wed (Jan 25th). A couple days before that we noticed she wasn't having many wet diapers so I talked with our Dr here and we got a urine sample and yes, UTI! She didn't have any fever or anything and didn't have a seizure. She just finished up the antibiotic this week and now this seizure. Many kids with Dravet have seizures because of being over-stimulated, bright lights, noise, etc... There were a lot of those potential triggers at the pool. It's just something we will have to keep our eye on. Hopefully Luella will not have any of those triggers. It can be so hard on families when you have to avoid certain triggers!

I was actually going to write a post this morning about how great Luella is doing. We really feel like we have our old Luella back again (mostly). She is just SO happy and bubbly. She actually squeals with excitement again, something we haven't heard in awhile. Her sleep has improved and the last 4 nights she has basically slept through the night and not needed to take a morning nap most days either! (Why she decided to wait and do this AFTER Jim returned from his business trip? I don't know! I averaged about 4 hours of sleep a night during the 5 nights Jim was gone!) It is SO nice to hear her happy and playing and not asking to take a nap! Her eating has improved a little but it's not close to being "fixed" yet. She has days when she will eat - sometimes even without being bribed with a pretzel, and other days when she's back on a liquid Carnation Breakfast diet. We have a medication that will increase appetite but we haven't started it yet. We wanted to wait until we were done adjusting her other meds first.

We did get another depakote level done last Friday and it has come down a little more. We also completely dropped the clobazam. I think we'll just wait and see how things go for a little bit. If she ends up having another seizure soon we will have to decide if we want to adjust her meds again. We appreciate your prayers SO much!! We are praying to beat this last seizure-free record next time - 12 weeks, 6 days!

Hope you enjoy this video of Little Luella laughing and having a great time swimming!!

Video of Luella swimming.