Vivonex Day 1

We started Lucy's Vivonex trial today! Right now she's on a mixture of 1 part Vivonex to 3 parts Neocate 1+. We will upgrade that ratio every few days depending on how well she is doing.

Today went okay. That's all I will say about it. It was okay.

Lucy's Upper GI is going to have to be rescheduled. I got the appointment slip from the hospital today and the scheduler somehow keyed her in for a VCUG and not an Upper GI. I will have to call Monday and cancel/reschedule in the hopes they can fit us in quickly. Ugh. I was so irritated to see the slip with an incorrect test. I corrected the man on the phone when making the appointment and he brushed me off....turns out he needed to be corrected!

Thank you for checking in on Lucy!

Its on the way!

I FINALLY got a call from our DME that Lucy's new formula is on the way. I had been waiting since last week for our GI to call in the script, and every time I called our DME they said they hadn't received it yet. After playing phone tag with the GI for a few days I got in touch with him and he said they had already sent over the new script THREE times! Ugh!
We finally got it all smoothed out today and it should be here tomorrow I imagine. If it arrives tomorrow I plan to start right away on Friday morning. We are burning through our stockpile of Neocate 1+ and there's no time to waste!

Update

I managed to get Lucy's Upper GI scheduled today for the 4th. I had no idea it would take 30 minutes to schedule but at least its done! Sheesh!

Lu is doing alright. Shes back to the intermittent complaints that her stomach hurts most of the day. So, so much for that brief run of feeling so perfect!

I started teaching Lucy to read a couple of weeks ago and I am really excited about it! Shes doing great and started working on blending sounds together in 3 letter words with an A. I am so nervous to teach from the very beginning, by the the time I started homeschooling Zachary he was well into the reading process. This is new territory for me!

Better

Lucy is definitely feeling much better today! Shes pretty much been her usual spunky self today, and I am thinking its about time!

We got her order for the Upper GI and I plan on calling tomorrow to see when the hospital can fit us in. I also need to check in with our medical equipment supplier to see if they have the prescription for her new formula yet. Hopefully they do.

That's all I have for the moment! As always, thank you for checking in on Lucy!!

Grouchy

Lucy is still feeling a bit under the weather. She was pretty consistent about her belly complaints today. She also "almost" threw up a few times. I supposed its going to take longer to get beyond this Elecare trial than I had hoped.

I cannot say enough times that I am SO glad we had a stockpile of 1+ in the basement. This stockpile will give us more time to rebound before moving right onto the next formula.

Hopefully Lucy will start feeling better soon. We have a busy weekend planned as usual and I am hoping it will provide a distraction for her. Lu doesn't let anything keep her down, so if there is something fun going on, she is usually still right there in the middle.

Thank you all again for checking in on Lucy!! I hope its a great weekend!

Update

Dr. G called us this afternoon after I left him a more "distressed" message this morning mentioning the 2 lb weight loss.

He agreed right off the bat that the Elecare was not an option and we were calling it a fail. So that left us to a discussion about where to go next. There is one other elemental we haven't tried that we didn't previously consider because its very low in fat. However, with other options being scarce, Dr. G decided to discuss with some colleagues, do some research, and get back to me. He ended up calling me back and agreeing to it! So we are going to give a formula called Pediatric Vivonex a try. I am hoping and praying that we have success. I don't know how much worse her nutrition and weight can get before our doctors take more drastic measures.

After thumbing through Lucy's records, Dr. G is also ordering another Upper GI series. Apparently, when Lucy had that procedure at 7 months old it was not completed because her stomach took so long to empty. I remember we went and we got stuck waiting for an eternity and having to go back in to see if anything had happened, but nothing was. After about an hour or more they told us everything was okay and we could go home. So much for that! So now Dr. G wants it redone so we can get a better idea of how long its taking for her stomach to empty- and if that is, in fact, the issue.

This morning I switched Lucy back to her 1+ since I have about a month's worth stock piled in the basement. Shes still feeling lousy but better than yesterday I think.

Thank you all so much for checking in on Lucy!!

Weigh In

We just got back in from Lucy's visit with Dr. B. Her weight was not good. According to what I was told, and what her chart indicates, Lucy has lost 2 lbs since starting the formula trial.

I was shocked. Shes back down to roughly 27.5 lbs.

Dr. B was adamant that I argue with the GI about staying on the Elecare. She felt we needed to do whatever it takes to find a better nutritional source. Lucy is miserable and clearly not getting what she needs to grow.

We still have no word from the GI yet either. I really wish he would hurry up and call. I hate sitting here in trouble with no plan in the works.

Thank you for checking in on Lucy.

Not Pleased

Its true. I am not pleased with the Elecare at this point. And quite frankly its progressing to a point that I don't think this will work for her without modifications being made.

Lucy's reflux has just gotten SO bad since starting on the Elecare and shes been complaining regularly that her stomach hurts. It was bad on Monday and she was complaining so much that for her overnight feeding I cranked her rate down a bit. She woke up and still seemed to have some mild reflux going on but had improved so I decided to hold her at that rate and see where we ended up today. She did much better reflux wise but complained throughout the day that her belly hurt and was really really whiney.

I have no idea where to go from here. I left a message for our GI and I hope he gets back to us soon. I don't know if hes going to want to stick it out with the Elecare, switch to a GJ, add pain medication, or if he'll just want to flat out move onto the next formula trial. I also worry that he'll say, "Well, this is as good as it gets for her."

I'm worried.

I have Lucy scheduled for a weight check with our pediatrician Dr. B tomorrow. I am hoping to get a chance to run our latest situation by her and see if she has an insight to offer. Dr. B is usually our "go to" lady and we don't know where we would be without her!

Update

Things are going so-so with the formula. She's been full strength for a few days now, and although uncomfortable, Lucy is tolerating it. I am not thrilled with where she is at but if this is as good as it gets, then it is what it is.

I am going to call her GI tomorrow to discuss where we are at and see if Dr G wants to keep the Elecare or not. I also want to get Lucy in for a weight check with her pediatrician this week.

Sorry to be brief, but we've had a busy weekend with some house projects and I am just plain pooped!

As always, thank you for checking in on Lucy!!!

Another formula update

We are still trucking along. Lucy is on her last day of 1 part old to 2 parts new. Tomorrow I will go to full 100%.

She woke up this morning complaining she didn't feel well and crying that her legs hurt, neck hurt, and head hurt. She wanted me to hold her and she laid in bed for a large portion of the morning. She begged me not to put her back on the pump and after I got her on it she tried to strike up a "deal" with me that she wouldn't have to get back on it at bed because "night time is too much." I was really worried we might be at the beginning of the end of our trial.

As the day went on she seemed a bit better and didn't complain as much, so hopefully this is just a minor hiccup.

I have intentions of getting Lu into her pedi this week for an overdue weight check. Its been quite a while since we've seen Dr. B! Other than that, there's not much to report!

Thank you for checking in on Lu!!

Update #2

We are still moving along with the Elecare formula. Lucy is on her last day of 1/2 new and 1/2 old and tomorrow we will move on to a 2 to 1 ratio. We don't have any major symptoms of rejection, like vomiting, diarrhea, or screaming constantly. That's a plus. I am honestly surprised how well things are going! However, I am still nervous. We are only at 1/2 the volume and at a diluted concentration of 26 calories per ounce, but she has some minor issues that I imagine will get worse as we increase the volume of Elecare she's getting in a day. Then again, maybe they won't.

Overall, it looks like things are slowing down a bit for her digestively. So far, its nothing overwhelming and I expected it with the change. Elecare has quite a bit more fat than her current formula and fat tends to leave the stomach more slowly. Hopefully once she is on 100% Elecare her body will figure out how to empty it out faster, otherwise that GJ tube will be in our sites sooner rather than later!

I know it probably sounds like paranoia to be so watchful for symptoms that may or may not exist. But, at this point one thing we have learned is that when Lucy is exposed to something she can't handle she will gradually lose more functioning of her GI tract. The faster we catch it, the more functioning we keep. If I ignored symptoms for months I run the risk of having her get really sick and then never fully return to normal.

If you followed Lu during "The Lollipop Trial of '09" you might be aware of what I am describing- we tried lollipops, ignored problems that were cropping up believing they were unrelated, and later Lucy became really sick and never fully returned to her old normal. She developed a volume intolerance and it was the start of the downward slope that eventually led to the g-tube.

At this point, I am just trying to be realistically cautious so that Lucy doesn't have an even worse year as compared to the last.

I know its not much information, but figured I would try and update anyway. Thank you for checking in on Lucy!!

Update

I figured I would at least post something for anyone that is wondering. I still don't have any idea whether or not we are passing or failing.

On Day 1 Lucy had a few "explosions" within an hour of starting her feeds for the day and I really thought I would be forced to pull this before dinnertime, but it stopped after a few rounds and she finished off the day just fine.

Today, Day 2, we haven't seen any stomach issues than some minor reflux. She was awfully tired and irritable today, but that could be totally unrelated.

I will give her all day tomorrow at her current rate, concentration, and ratio of new to old formula and then switch on Friday to a 1/2 and 1/2 mixture at her usual rate and concentration if there aren't any problems.

Thanks for checking in on Lu!

Formula Trial

Lucy's first ballet class at her new school was tonight. It was GREAT! She absolutely loved it. This class was so much more lively and fun. There were hoola hoops, scarves, and even a smattering of tap dancing involved and Lu was completely exhausted by the end of it. It was such a dramatic change from her old school- which was dry and disciplined. Lucy enjoyed her old school just fine, however, I decided to switch based on some other issues I had with the school itself. It seems like my decision paid off and this one will work out much much better for her. Although, I have to say all the other preschoolers in this class looked like giants on steroids compared to Lucy! She was at least a head shorter than most of the girls in her class!

We start her formula trial tomorrow. This could be a long process before we know if we are in the clear or not. We will only start her off at 1 part diluted Elecare to 2 parts diluted Neocate 1+. Additionally, Lucy is only at a rate of 42 cc's an hour- which is less than an ounce and a half per hour, so I just don't know how long it will take to see her gut completely reject things. Things certainly could be bad by bedtime tomorrow, but then again they may not be bad until 4 or 5 days into this whole thing. The hope is that things won't go bad at all and that by this time next week she will be completely transitioned to 100% Elecare.

I am crossing my fingers for tomorrow and leaving the rest up to the Lord. Hopefully this is a smooth and easy process for Lucy, and if it isn't I hope I can make the right choices for her so that she can be well.

As always, thank you for checking in on Lu! I will update whenever I can with her formula trial.

Update

My good friend, M, came through for me again! Her daughter, R, is on the same formula that Lucy is set to trial this week and M generously offered up a whole case that she happened to have had extra laying around! We met up Saturday night for some much needed dinner and discussion so that I could grab the Elecare from her. It was a great night! It always comes as such a relief to talk to another mother who has "been there and done that".

With a whole case of new formula and a couple cases of our old formula stockpiled here, we are all set to begin our trial on Tuesday. Lucy begins ballet again on Monday and I wanted to wait so that it wouldn't interfere with that. It should be easy enough to start by Tuesday and hopefully not affect her next lesson if things do not go well.

Unfortunately I had to pull back on Lucy's feed rate. We got up to 44cc's an hour but after just one day she was screaming and begging me to not put her on the pump because it hurts. She kept complaining that she didn't feel good and was acting a bit "blah". I took her back down to 42 cc's an hour she seems to do just fine there and even asks to get on the pump when shes been off of it. So for now I am not touching the rate, especially while we sort through formulas.

Thanks for checking in on Lucy!!

Happy New Year!!

Happy New Year to all our family and friends!

We wish each and every one of you the absolute best in 2011!

Love,
Zach, Erin, Lu and Zachary!