Saturday, January 10, 2009

Fevers, Drooling, and Weight loss, Oh WHY?

Since our last visit to the Cystic Fibrosis Center in December, Lainey has been struggling to follow the advice of Liz, the dietitian! We have quit feeding her solids and focused on feeding her 30 oz. of 24 calorie Alimentum formula. YEAH RIGHT! Once Lainey is full, there is no forcing her to eat! Now she isn't eating solid food, but continues to only eat around 20 oz. of formula! In addition to the change in food intake, Liz called the day before Christmas suggesting we increase Lainey's Ultrase from 3 capsules before each feeding to 4 capsules. In several days we noticed a weight loss, change in stools (number, consistency, and color), and a lack of interest in her bottles. She is teething, so for my own comfort, I convinced myself she was having a difficult time with feedings due to her teeth.

Thursday evening I decided enough was enough. Sid weighed her so I could call the Synagis nurse with her weight, only to find that she had lost 4 oz. in less than a week! I decided we had to have a new game plan. I called my mom and told her we were going to feed her any amount of formula she would take and then let her eat as much rice cereal and baby food as she wanted! Since mom is her caretaker during the day, she agreed that we needed to do something. Yesterday mom fed her as much food as she would eat. She ate a lot of food while continuing to take a lot of formula. It was great to see her eat, but it is still discouraging because she is having a lot of stools throughout the day.

With the new worry of extremely foul stools, large amounts of stool, and the frequency of her stools, I called her Cystic Fibrosis doctor. Dr. Caplan was not happy to hear that she was loosing weight and has had an increased number of stools. With this news he wants us to change a few things. Now Lainey will be drinking PediaSure because it is 30 calories versus the formula's 24 calories. PediaSure is not cheaper either as I found out last night at Walmart! $9.88 for 6 - 8 oz. bottles! Two cases will maybe last 3 days! He wants us to continue trying to feed her solids, but they must contain vegetable oil to add to the fat content. We are also trying to go back down to 3 Ultrase capsules before each meal and work our way back up to 4 as we deem necessary. We will do whatever it takes...she has been too healthy (knock on wood) to let things go down hill now! Luckily we go back to the CF Center on Friday. Maybe we will be back on track by then!

In addition to Lainey's medical needs, we have had other things occurring within our family as well as with our friends. On New Years day, Liam's day care teacher/director passed away. She was only 41! She had gotten home from Night Watch at church and was talking with her sisters at the table when she had what appeared to be an asthma attack. They called 911 and she was revived by the EMTs long enough to tell her son she loved him and then she was gone. I received the call about her death around 10:00 am as we were headed to Stone Mountain for some snow tubing. It has been extremely difficult to take Liam to the day care each day and not see Teresa's smiling face to greet us. Liam asks all the time, "Where Resa go?" He isn't the only one that loved her and it was evident by the number of people at the wake and funeral. She will truly be missed.

Also this week, I thought that I was going to have to hurt Sid after he backed into my Expedition on Monday. He was distracted by the kids and put his truck in reverse, rather than drive! Needless to say, my vehicle is in need of some cosmetic repair! After some yelling and fit throwing, I am feeling better and have given Sid another chance at life! :) Now we know what our tax refund money will be spent on this year!

Yesterday I went for my physical. Beside the continuation of iron supplements, multivitamins, and vitamin D, almost everything checkout okay. I did have protein in my urine and elevated liver enzymes, therefore I have to go back in two weeks for more blood work. This blood work will help her decide the next course of action. I also went to the vein specialist about my varicose veins. I am not one to care what they look like, I just want to get rid of the pain! The constant heaviness, numbness, and sore feeling that runs up and down my leg is extremely painful. The doctor concluded that I have small veins, and he would like to inject foam through the veins to close them off, thus resulting in little to no pain. Sounds like a plan until he says my insurance probably would not cover it because it is considered cosmetic. It would only cost me $475! Uhhh, NO! That is why I have insurance. I really don't care if my whole leg is purple, I just want the pain to go away! After speaking to his insurance lady (a.k.a. sales lady), I told her I would go somewhere else for a second opinion. Needless to say, she is going to check with the insurance company to see if they will cover the procedure! Now, that is what I thought! :)

Yesterday we also found out that Sid's insurance is not what we thought it was! The plans all had similar names, and it seems that somewhere between our conversations at home about health coverage and the person who works in human resources at the hospital, the wrong plan was chosen! Not cool. The insurance chosen is more for someone that doesn't need to go to the doctor and doesn't take any medications. Since Sid takes 4 medications and has to go to the doctor every 3 months for refills, this new insurance plan is obviously not for him! Essentially we have to pay $3600 out of pocket before it covers anything! Not what I was thinking would be good for the family when we put him on his own insurance! Unfortunately, we cannot change this until next year and he has to have his medications to obtain optimal health. So much for saving money!

I will try to post some updated pictures sometime this weekend! I am home with the three kids by myself until 7:45 each night, so I have limited time to post unless they are napping! Please continue to pray for Lainey's weight gain, less amounts and frequencies of Lainey's stools, our insurance, and test results. Thanks for all of your encouraging words and thoughts during these physically and emotionally draining times in our lives!

Love Always,
The Smithson Family


Cindy said...

Hi. My daughter, Reilly was diagnosed with CF at 19 months. Neither her father or I had any knowledge that we carried the gene, or of anyone in our families with it. When you get that diagnosis, it is such a whopping surprise. At any rate, she is doing well now, and is 5 years old. I found your blog through Google Alerts and thought I would stop by and say hello. I have met several wonderful people in the CF comunity through blogging, and it is a wonderful resource for support and questions!

Lainey is adorable, and I hope the doctors are able to get her recent symptoms under control.

The Browns said...

We are thinking and praying for you all!

Somer Love said...

Thinking of you and sending you love! I hope Lainey can start to keep on the weight.