Some January Pictures

Carter in the "ball pit", our pack and play filled with balls

Brenna in Drew's hat and grandmom's shoes, or "shoe-wahs!" as she calls them

"Who me? I wasn't going to touch any buttons!"

Drew had fun with the silly string from Aunt Nicole and Uncle Joe.

His class had Career Day while I was at the hospital with Em. Daddy and Grandmom came up with this get up - Drew G. : Happy Homes Real Estate Agent! :)

"Hiya!"

Late night cuddle time for Daddy and Emily

We are HOME! Again.

There was no more vomiting after last night's incident! They really moved on our discharge and we were out the door before 10am!

I have spent all afternoon trying to get one of her prescriptions, but at least I'm doing it from home! :)

Another Day

Emily was doing pretty well with her feedings today. She still was doing a lot of choky, gagging coughs, but no vomiting. We adjusted the feeds to a lower dose at a lower rate. We discussed going home after her 6-8pm feeding tonight.

She had her longest feeding from 1:30 until 5:00 and then I gave her a bath. While I was getting her dressed, she started coughing and vomited again. Since it was so late and they still wanted to see another feeding and do more blood work before going home, I figured we had better stay one more night. The last thing I want to do is rush to get home and then have to come back again.

We hope to leave early tomorrow.

Another Day at CHOP

Just as we were about to be discharged yesterday afternoon, Emily started vomiting again. This time, the throwing up was proceded by a yucky cough. And I mean, the nurse was walking in with the discharge papers as she let it rip. :( That was around 4pm. She threw up a few more times before 7pm. Some of it had blood in it. So we had to stay the night.

They put her on just IV fluids and let her stomach rest until 10pm. Then they started her feeds again at a lower rate and since she was doing better (still coughing but no vomiting) they increased her rate every few hours until she reached her full rate. That was around 3:15 am, and she vomited again and then again, a LOT. :( Off the formula again, back on the IV only.

This morning at 8am, they gave her her medicines, started her back on some formula at a lower rate. No vomiting yet. But her 8am blood sugar was 30 (32 and 31 on rechecks), so now we need to worry about that. It needs to be over 45, and they would like it closer to 70!

My poor baby. I really would like to wave a magic wand, make her better and take her home.

Oh fuuuuudge!

We are back at CHOP.

I'll spare you ALL the gory details but Emily started having diarrhea and then lots of vomitng last night and this morning.

We are staying overnight. They want to keep an eye on her electrolytes because of their concerns regarding her vitamin D, calcium, blood sugar, etc. It could just be a stomach bug, but better to be safe than sorry.

She kept down her medicine and some water this morning. Her blood sugar was just low, so she got some apple juice and has kept it down so far. We are waiting for the IV team so she can get some fluids and they can get some blood too.

GREAT NEWS!

Horizon Blue Cross Blue Shield of New Jersey and CHOP Reach AgreementHorizon Blue Cross Blue Shield of New Jersey (Horizon BCBSNJ) and The Children’s Hospital of Philadelphia (CHOP) announced on January 16, 2009, they reached an agreement that will keep the facility in-network for Horizon BCBSNJ members. The agreement also ensures that CHOP’s physician groups and its facilities in New Jersey will remain in Horizon BCBSNJ’s network.“With this agreement, our members will continue to have in-network access to The Children’s Hospital of Philadelphia and their physician groups in New Jersey,” said Christy Bell, Senior Vice President Healthcare Management.

This is a major victory in the Gollihur household as we anticipated having to either change some specialists or travel further to see the same specialist if this agreement wasn't reached. Obviously, Emily's care depends a lot on this network and we are grateful we can continue seeing all the special people at CHOP.

Saturday - Checking in from HOME!!!

Emily and I arrived safely at home this afternoon! Yay! :)

Now the real fun begins! 3 (or more) blood sugar checks a day, 2 urine checks per day, weighing all formula and food to the gram 5 times a day, weekly weights, weekly blood ketones, crushing all pills and giving meds 2 times a day, counting seizures. And then charting it all to share with the keto team.

Hmmmm, I feel like I'm forgetting something . . .

oh yeah, maybe those three other kids! ;) Thank God it's a holiday weekend!

Thanks for all the postive thoughts and encouragement!

Saturday - checking in and hopefully checking out!

We are waiting for the neuro team to make their morning rounds. We should be getting the OK to leave today.

Endocrine came back last night and decided that while starting a Vitamin D supplement could increase her calcium (she has had high calcium in the past and they are worried about it going up again), it is worth it to try the Vitamin D because her level was low and her bone age showed slow bone development for her age.

Her blood sugars were normal overnight and this morning when I took it. But the level from the lab taken at the same time came back low! Uggh.

I'll update soon!!!

Friday - Checking In

Today is the day we are supposed to be leaving. All of Emily's new Keto friends have gone, but we, unfortunately, will be staying until tomorrow morning.

Emily had 1 low blood sugar last night, and 1 low blood sugar this morning, so they want to watch her for one more day. Endocrine has also been in with concerns about a low Vitamin D level. My feeling is that they seem to be saying that they are uncomfortable with her continuing on the diet because of the low blood sugars and vitamin D level. I'm not very patiently waiting for them to come back.

Emily did have 2 clusters of spasms last night, and so far 1 today.

Thursday am - check in

Emily's blood sugars are back up! They are holding steady in the 60s and 70s. Her nurse and dietician and very excited and proud of her. ;)

She had 3 cluster of spasms on Tuesday, and only 2 and a partial one that was about 2 minutes long yesterday. So far, none today. It is early though.

She will not have an oral feeding today because of all the added calories from the apple juice, but tomorrow we are working in 2 oral feedings!

I have a morning class, a focus group, and CPR class this afternoon. Ugggh.

Wednesday Wednesday Wednesday!

Oh brother! Emily's blood sugars started plummeting around 3am. All morning, her sugar was reading between 30 and 40. The low limit for "keto kids", as she is now called, is 45. So she got treated with syringes of apple juice every 30 minutes until the sugar reached 50.

The keto nurse and dietician conferred with her doctors from neuro and endocrine all day, and they agreed that rather than give her a dextrose IV, they would continue to give her apple juice "shots" as needed, while adding more carb via more apple juice to her formula mix. Since apple juice is mostly water, it only adds few grams of carbs; enough to keep her blood sugar up, but still keep her on the diet.

We had a surprise class/meeting with the social worker, I missed lunch, and then had to get to class #2 - Sick Days. With such a regimented diet, keto kids have to be very careful of medicines they might get if they get sick. All medicines will have to be given in tablet or caplet form - even Tylenol. Those Tylenol concentrated infant drops have carbs and that's a no-no. And even some tablets and caplets have carbs, so we might have to add fats when giving meds to counter balance. Steroids are totally out.

Interestingly, lots of other things have to be counted as well. Tom's of Maine toothpaste and Oral B are ok, other brands have too many carbs! Shampoo and lotions are ok. Oral swabs are not. Chapstick is ok, kiddie lipstick is not.

Anyway, finally around 5pm, Emily's blood sugar reached 62! Yay! And I did eventually get lunch. (Cafeteria had lobster bisque today - mmmmmmmmmmmmm) We're hoping for the best for tonight and the rest of our stay. If we can't get her sugars regulated, we'll probably have to stay here until we do. :( Or, we might have to give up the diet all together. None of the doctors or nurses have even mentioned giving up, so I'm trying to stay positive!

On the homefront, Gee-off and Grandmom have been holding down the fort at the house and I'm missing everyone pretty badly. Luckily the hospital had an extra cell phone charger for me to borrow since I left mine at home! I just talked to Drew, Carter, and Brenna, and it was nice to hear them; even though Carter was crying, Drew was whining about bedtime, and Brenna was doing something she wasn't supposed to on the couch! :) Daddy had it under control though.

Thanks for all the comments, positive thoughts, and prayers for us!

Checking in Tuesday - #1 and #2 :)

It's been a busy day! This has been my first chance to post.

They woke us up at 6:20 to put in Emily's blood drawing IV. They checked and double checked her arms and legs, and put heat packs on her arms and legs. They decided on her right ankle, and got it on the first try!!!!! :) It still took about 25 minutes, but it's working well for blood draws so far, and I have my fingers crossed it will last the whole time we're here.

I measured out her first feeding at 8am and ran that through the pump. She is on a bit of a different schedule for feedings for now too. But she tolerated the new formula well! It is a carbohydrate free formula, called RCF, mixed with Microlipid and water. The microlipid is emulsified oil that will mix with other solutions and contains the fats that are the key to this diet. The RCF and Microlipid are mixed with water, and that is the formula.

At 10 o'clock we had our first class, side effects of the diet. We officially met the 3 other families, all of whom also have girls; one 4, one 3, and one 14 months. We were informed that constipation, vomiting/nausea, and sleepiness (like after Thanksgiving dinner) are the most common side effects. Emily is already constipated on a regular basis, so we really have to keep on top of that. Her Colace has been switched to Miralax because it comes in powder form. In fact, all of the medicines that come in liquid form had to be changed to tablets or powder because the liquid form contains sugar, which she can't have. So now there will be many more pills to crush at med time. :(

We were given a chart to record daily seizure activity, urine test results twice daily, blood sugar daily, weight once a week, and a few other things.

After class, I ran back to get Emily's next feeding weighed and started. But before I could do that, I had to take Emily down to get a bone age xray. It's a requirement of the diet, but I'm not quite sure why. When we got back, I got the feeding started and ran down to get lunch. I had just enough time to shovel it down and then it was time for the next class!

Class #2 was with the dietician and we had to bring our calculators! ooooooooooh! ;) We had to practice calculating meals, using carb, protein, and fat exchanges. Right now, Emily is only eating a tiny bit of food by mouth, but if she progresses and starts eating more, I will have to know how to do this. Not too complicated, except when the protein required adding or subtracting from the fat exchange values. Luckily we have a math teacher in the house! *wink*

After that class it was almost four o'clock. We had a little break (read "nap") and then it was time for dinner. I brought Em's feeding chair from home and she had her oral feeding and another bolus feed on the pump. I got some dinner too and now I'm settling in for some good TV tonight!

(Hey honey, if you read this in time, can you record Biggest Loser???) :)

Good night!

Checking in - Monday #2

Not much to add to the previous post.

I ate dinner.

I took Emily for a stroll in hallway, since this time, for the first time during a hospital stay, she doesn't have to be hooked up to the monitors! :)

In the hallway, I met 2 of the other Moms whom I had previously met at the Keto class in November. It was nice to see familiar faces.

We realized it will be a very early start.
They will be doing the IV before 6 am (since they did not put it in tonight), and getting the first blood draw at 6am.
We need to be ready to go by 7ish, so we can prepare for the first feeding at 8am.
Our first class with the nurse is at 10am.

I'll update again, sometime after noon tomorrow since the morning will be so busy.
Good night!

Checking in - Monday #1

We're all checked in! Emily is now snoozing away in the spankin' new hospital crib. The rails go all the way up like a little jail cell. :) We don't have to worry about that since she doesn't try to climb out.

So far, I've gone over Emily's feeding schedule and medications with 2 nurses, 2 doctors, and the keto nurse and dietician - each separately. I've taken a second trip to the car to bring up the rest of our bags, and also stopped to have lunch.

She did not get an IV yet, but that is possibly coming tonight. That is the only thing really happening tonight.

She will continue on her regular feeding schedule, and regular formula until 5 am. We will start the keto "goodness" at 8am tomorrow. Her feeding schedule with amounts and times is posted for the next 2 days. We will be measuring all of her new formula, water, and baby food to the gram. Everything is very exact.

I'll check in again before bedtime. :)

Merry Christmas!

Yes, I realize it's been almost 2 weeks now since Santa came!

Here are some pictures of our wonderful day.

Emily in her peppermint hat!

We decided to let the kids open their gifts from Meme and Pepe early since we knew there would be an overload on Christmas day!

The stockings were hung on the staircase with care . . . (ummmm, no fireplace!)

It's a snowball maker

Yay for Christmas!

- A rare picture of all three babies together -