The latest from Sickyville!

Emily has continued to have terrible BMs (I just hate to say the "d" word over and over again!), today is day 15!! We can not do the typical BRAT diet (bananas, rice, apples, toast) because of the restrictions of the keto diet, and there are no medicines we can give right now either.

Our options right now are to:

1. Try feeding yogurt for her oral feed. BUT, she has been so sleepy and fussy there has not been a good night to even try starting the oral feeds again. I was hoping for tonight, but it was not a good one! :(

2. Since the BMs are becoming a bit less frequent, try to wait it out a few more days.

3. Have the stool tested for c diff. - I have my test vials ready and waiting for the next specimen! This could be treated with an antibitotic if positive.

Emily also started having elevated temperatures this morning and then later this afternoon, so I took her to see the pedi. She has also been extremely fussy, crying a lot, and today was the first day I have EVER carried her into the office screaming. She was screaming, not me! ;)

Her throat and left ear looked ok, her right ear was too blocked with wax to get a good look. :( Dr. K decided to get a catheterized urine sample to test for a UTI just in case, so I have those vials ready to bring to lab too. She is teething, and has about 4 teeth pushing through right now, 3 of which are molars. Darn teeth!

She is tolerating her full feeds on her regular schedule now - YAY!!! And her blood sugars are back up to normal levels too - Good news. Phew!

And then there's Carter. He went back to see the pedi on Tues. when his temp flew up to 103 out of nowhere. His right ear was mildly infected (just as it was 2 weeks ago to the day), but Dr. N said not enough for that high of a fever. So he probably has something else viral. (Which Emily could have too I guess) He is on another antibiotic, and already feeling better. No fever since Tuesday. He has been extremely clingy and whiny since the beginning of all this sickness. He has also had a few loose bms again, but maybe due to the antibiotic. Poor buddy.

And Drew. He had been doing great since he got through the stomach bug in 2 days like me. Today we had his follow up with the ENT. He has had two sets of tubes after having 10 ear infections in 5 months at one year old. He got the first set in 2005, and another set just before the babies were born in 2007. Well, this is the first we've been back for a follow up since then.
We did know from his check-ups with the pediatrician and the one ear infection he had in the fall that his right tube was already out and his left tube was getting ready to fall out.

When we got there, they brought us over to the audiology side to my surprise. They checked his ears by Tympanogram first and found there was negative pressure on both sides - not good. She did confirm that one tube was out and one tube was sitting in wax (ok, I'm not very good at cleaning their ears, I get it!!!!) Then we went to the sound proof room for the hearing test. He repeated all of the words she said through the headphones. I did hear him ask her "what?" once. And he raised his hand when he heard beeps. When she came in she said he showed mild hearing loss in his left ear. :( He never has before so I was very surprised.

When we saw the doctor, he did say the runny nose/cold that unfortunately just started today could be the reason for the test not going so well. He suggested we bring him back in 6-8 weeks for another check without a cold. And if it's still not looking good, he'll need another set of tubes and his adenoids out too.

Brenna is holding her own right now. She has had some loose bms again like Carter, but nothing else. She also was the only one to avoid vomiting during the stomach bug fiasco! Go girl, she is one tough cookie.

Please, please let this all be over soon!!!!!!

Finally Home

We actually got discharged on Tuesday evening around 6:30. Emily had been doing great with her sugars at the hospital and had not thrown up. We got home just in time for her nightly meds and she immediately threw up! Then she threw up again about 2 hours later. :(

On Wednesday morning, her sugars were dropping again, even on the 24 hour feeding schedule. I called the hospital thinking we would have to go back, but by 2pm her sugars had come back up and no more vomiting.

Unfortunately, Nicole got sick Wednesday afternoon so she and Joe retreated back to Joe's brother's house so Sierra wouldn't get sick too. No such luck, Sierra started throwing up on the the way there and he got sick today! :( This thing is vicious! I feel terrible and I'm so sorry our visit got cut short due to this horrendous stomach bug.

We are finally starting to see less messy diapers from Carter and Brenna though. Gee-off, Drew and I have been feeling better for a few days now too.

CHOP (day 3) 6am

When I spoke to Aimee last night, Emily was tolerating her feeds at close to capacity. Her sugars were still jumpy and there seemed to be a short term solution on the horizon with the sugar water/apple juice.

Joe, Nicole, and Sierra made it yesterday to find one VERY excited Drew. They'll stay with the crew today and I'll fight my way back to work despite my bugger of a sinus infection.

The Neurologist came in to see Emily late yesterday afternoon to report the findings of the EEG. There was still sigificant hypsarhythmia, although these results were not yet compared to a previous scan to determine improvement. She comforted Aimee in the fact that Emily is doing more lately than before the diet, and that there is still more to learn.

These were not the results we were hoping for... The only thing this really tells us is there are more unanswered questions for Miss Emily.

Hopefully our girls will come home today... We surely miss them.

Update: CHOP (day 2) 8am

Aimee just gave me an update: Emily wouldn't tolerate formula feeds through the night, she kept throwing up. In order for her to get her entire feed over 24 hours she needs to eat at a rate of 45 mL/hr. She is currently handling 20 mL/hr without getting sick. The hope is to gradually increase during the day so she can eventually handle the full feed. Her blood sugar levels are still bouncing between 40-55, the goal is to maintain 50+.

Emily's room is on the neurology wing, so hopefully she can still see her Doctor today for her scheduled EEG and appointment. One of the fabulous nurses in charge of the ketogenic diet already stopped by to see her.

Update: Back to CHOP

Ok...

I'm back on my feet again, Aimee is back on her feet, Drew is back into the swing of things, and the crankiness continues among the little ones. Unfortunately, Emily has not been able to handle formula since Friday night.

We've had her on continuous water, to avoid dehydration. Aimee has been checking her blood sugar regularly and adding 8.5 mL of apple juice when needed to maintain Emily's blood sugar at an acceptable level until she could tolerate her feeds. This was basically the same thing we did last time she was refluxing and/or sick with stomach issues.

Unfortunately, the illness got the best of her and the on call doctor wanted her brought in to the ER this morning. Her blood sugar was at 28. They were admitted to 7 West this afternoon and will not be sent home until she can handle her feeds. As Aimee posted yesterday, Her family came down for a visit and is supposed to stay with us this week, so this is not a good week for her to be stuck in the hospital.

Meanwhile, the cranky Duo are on a nap strike since Mommy left the house. Hopefully they'll sleep well tonight.

And another one down, and another one down, another one bites the dust . .

Monday: Drew did start feeling better, but Carter didn't.

He had an ear infection when I took him to the pedi on Tuesday night.

Wednesday afternoon, I got really sick, vomiting and the whole deal. Meanwhile, Gee-off took Drew and Brenna to the pedi to see if they too had ear infections. They didn't, but Wednesday night Drew and Carter joined me with the stomach bug and we all were very sick through Thursday.

Drew and I felt better by Friday, but Carter and Brenna were having yucky bowel movements and continue to still today.

Emily started throwing up last night, and Gee-off is sick in bed today.

Meanwhile, we're supposed to be hosting a family birthday lunch tomorrow that we had to cancel, and my sister, brother in law and niece just drove down from Maine and can't stay with us yet!

WAAAAAAAAAAHHHHHH!! :(

Pride

Drew and Carter have been sick on and off this week. It’s been a lot of holding, comforting, and coddling our boys, but we think we have reached the summit and are on our way back down Cranky Mountain.

Meanwhile, we received two letters yesterday, one from the Department of Developmental Disabilities telling us we’d be receiving a check to help cover costs of some adaptive equipment for Emily (We’re going to get her an outdoor swing for sure). The other letter was to let us know we had officially been granted a waiver to get Emily some Medicaid benefits, which may mean we can get some nursing help…

Last night, while Aimee was putting Carter and Brenna to bed and I was folding laundry upstairs in our room, Drew was downstairs straightening the living room to prepare to play a game with me before bed. He comes running upstairs full speed, shouting, “Emily is having spasms!”
Uggh. Our sweet Emily, who has been so strong and seeming to benefit so much from this diet, had gone 27 days without a real seizure. We’ve been measuring formula and food to the tenth of a gram, testing her blood and urine multiple times daily, having tons of appointments, and changing all her medicines to account for their carbohydrate content. Basically, we’re throwing all our chips in at this last chance for Emily to develop.

That is exactly what was going through my mind as I sprinted downstairs to expecting to see what we’ve feared each day since we’ve seen improvement in Emily’s spasms. I could hear Aimee quickly finish with Carter and Brenna and then rush down to my side.
There I was glowing with pride… Emily wasn’t having spasms at all. Our little cutie had been moving around significantly and caught her head under her crib activity center and her legs were stuck between the slats. She was upset, but the kind of upset that makes a Dad weep for joy. She’s crying because she got stuck while moving around.

I then looked at another source of pride. Drew came running to us as soon as he felt a hint of something wrong. He’s only five, but he’s experienced so much more. He’s watched his Mom and Dad share their love four ways instead of just focusing on him. In the last year, he’s endured 67 days when Mommy went to the hospital and sometimes didn’t come home for days, while Emily received all the attention. He’s watched all his small toys become banned from the areas where babies might get to them, as many of his older toys became Carter’s and Brenna’s. He’s watched us cheer on Brenna as she gains language and hold Carter whenever he cries. He sees us stop everything to run over and watch Emily smile. Don’t get me wrong, he’s as spoiled as can be and certainly gets his share of attention. But what an incredible little man he’s becoming. He’s been reading words like crazy; read 16 pages out of a book he’d never seen before to me the other night.

How proud I am.

Brenna says “Hi Dah” each time she greets me in the morning. Carter laughs and smiles enough for all of us. Emily is seizure-free for 28 days and was holding her head up quite a bit while we went on an outing today. Drew is an emerging reader and a terrific all around kid. Aimee can do anything and she loves me.

I could not ask for more.

Monster Jam

I took Drew to see Monster Jam as a surprise outing with the local Mom's club (oh, about 2 weeks ago!). It was ridiculously loud (you'll notice the ear muffs and we also had ear plugs), but very fun! He was really into it, loved all the trucks and kept calling them his "boys"! I enjoyed it too!

Introducing the drivers . . .

Here come the trucks!

Backdraft

Cheering on Grave Digger

Grave Digger wins!