Saturday, February 28, 2009

What's Up Doc?

This has been a week of doctor visits for Logan, Lainey, Papa, and Gigi. Some reports were better than others. Some things we heard from the doctors we questioned and are still questioning. Hopefully now we will have a break from going to the least for a couple of weeks!

Logan had his 5 year old checkup at the pediatrician's office on Thursday. He was above the 90th percentile for his height and weight! Although he is a big boy, weighing in at 64 pounds, the doctor was not concerned. He is also 45 1/2 inches tall, thus balancing his weight. Keeping him active and teaching him healthy eating habits is our main goal. Logan loves to eat, but he is also all boy ~ meaning he is always on the go! In addition to a full exam, Logan was the lucky recipient of 4 shots in the thigh! Needless to say this meant cornering him, carrying him to the table, and holding him down. He is still complaining about the pain in his legs from the shots! I am sure we will still hear about it for at least two more weeks! Other than yearly flu shots, he is finished with vaccinations until he is ten! Yeah....except I am not sure I will be able to wrestle him when he is ten if it is this difficult when he is five!

Lainey also had her checkup at the pediatrician's office on Thursday, as well as her monthly clinic visit at the Cystic Fibrosis Center on Friday. Dr. Onal, the pediatrician, is extremely thorough and is in complete awe of Lainey and her accomplishments ~ developmentally and with her health. Lainey hated his assessment of her ears, mouth, and stomach. She cried like I have never heard her cry before and continue to whimper even after his exam. Everything with exception of her eyes and a possible ear infection, checked out to be great. Dr. Onal has prescribed eye drops for Lainey's eyes and has referred her to a pediatric opthamologist. He suspects clogged tear ducts, but isn't convinced that what her eyes are producing isn't mucus related to the Cystic Fibrosis. Lainey didn't have to have any shots for her 9 month visit! YEAH!

Our visit to the Cystic Fibrosis Center was the best visit we have ever had. Lainey gained 2 lbs. 5.3 oz since her last visit in January, bringing her up to 18 lbs. 6.8 oz! Woo Hoo! 30 calorie Alimentum with Polycose Powder is our new BEST friend. She also grew another inch and is now measuring 28 1/4 inches long! Although she is still in the YELLOW ~ at risk, monitor carefully range, we are so close to seeing the GREEN! Dr. Caplan and Liz (the dietitian) were completely thrilled with her progress. From his examination, Dr. Caplan didn't think Lainey had an ear infection as suspected by Dr. Onal. He also acted as if it was completely normal that Lainey's eyes were draining and was somewhat confused about her going to the pediatric opthamologist. I am not sure if she should go or not.....Is it a CF thing ~ clumpy, yellowish-green junk in the corners of her eyes, and tears falling from the outside corners of her eyes? Is it necessary for her to go the pediatric opthamologist? Should she try the drops, then decide if the pediatric opthamologist is the next step? Ahhhhh.....Questions, but no answers.......yet! Not one thing about Lainey's medications or diet changed as a result of her visit today! The dietitian said she was fine with Lainey eating more high calorie table foods and drinking less formula. This was great news since Lainey is only consuming about 20 oz of formula from her bottle. We usually sneak formula into other meals through rice cereal, just to pack on the calories! The doctors have a goal of Lainey gaining 1 lb. 5 oz. by her next clinic visit on March 20th, bringing her to 20lbs!!! We are up for the we have to get Lainey on board!

To kill several birds with one stone, Gigi and Papa scheduled their appointments for the same time as Lainey's. On Friday morning we left Gainesville at 8:30 am to head to Egleston and Emory. Papa dropped Lainey and I off at the CF Center at 9:50 and they headed over to Emory for their echocardiograms. *** My dad, Papa, had his aorta replaced in February of 2000 due to a tear in the mitral valve causing the blood to go around the aorta rather than through it to the heart. After his surgery, one of his lungs collapsed. Although the surgery and several days afterwards were emotionally and physically draining for all of us, he recovered remarkably well after being release from the hospital. *** The doctors continue to check on my dad's valve and high blood pressure. He went back to work shortly after his heart surgery and worked ridiculous hours. He was stressed out and it the stress showed it's ugly face by causing problems with his new valve. During that time he was diagnosed with stage 1 rectal cancer. He underwent surgery in October 2005 and now has a permanent colostomy. He caught the cancer early enough that he did not need chemotherapy. With the cancer added more stress to his new valve. The doctors now perform yearly echocardiograms to keep a check on the valve.

Lainey's CF clinic was over around 12:00, but Papa and Gigi had finished their echos, and were waiting to see their doctor in the Adult Cardiac Clinic at Emory. Finally my dad decided he had made me wait long enough and he came to pick Lainey and I up at the CF Center at 1:00. I would have walked to Emory, but it was pouring and we were under a flood watch! In the meantime, mom and dad's doctor was busy and she sent mom to the lab for several tests. After parking and traveling to the lab, she was still waiting. After the lab my mom was scheduled for a chest x-ray in the radiology building! Needless to say, this was nowhere close to her clinic. We waited for 30 minutes only to get a call from her doctor saying she was ready to see both her and dad! Without the x-ray we went back to the cardiac clinic! I am not sure exactly how long their appointment took because Lainey and I took a nap in the waiting room! We went back to radiology after mom and dad's clinic, only to wait an hour before my dad went to find out what was taking so long. They didn't have mom's paperwork because they had filed it after she left the first time! Amazingly enough it only took 10 minutes until they called mom back for her x-ray after speaking with my dad! We were finally finished with all of our appointments by 4:30! By the time we sat in rush hour traffic, picked Liam up at Aunt Dayna's house, and picked Logan up at Chick-fil-A where he was hanging out with his friend, it was 6:30 when we got to my parent's house!

Papa got a good report...well, according to what he is telling us! Gigi.....well, hers was not what we would have liked to hear. Her disease is progressing (read more about it here). The doctors are unsure if it is her heart that is causing her problems or if it is the secondary pulmonary hypertension. She is now on Lasix to assist in lowering the amount of fluid in her body. The amount of fluid in her body causes more pressure on her heart, thus making it work harder. If the Lasix works, then mom should feel better (less fatigued and less out of breath) by Monday. This means that her heart is the causing the majority of her problems. In saying this, there isn't much the doctors can do. The harder her heart works, the harder her heart gets, thus not working properly. IF the Lasix don't make her feel better, then it is the secondary pulmonary hypertension that is causing her to feel as she does. The doctors can do a few things for this, such as changing some of her medications and introducing some intense medications like Flolan. There are very few options left for my mom. We know she is a strong woman and will fight until the end. As anyone would, I hate hearing that there are few options left for my mom. She and I are best friends. We call each other at least 5 times a day and unless my parents are out of town, I usually see her everyday. Several years ago I vowed to myself to do for her what ever she needed. I also decided that I would spend as much time with her as possible. She and I have grown so close. We are always finishing each other's sentences, we have the same mannerisms, and we often say the same exact thing at the same exact time.

At times I am glad my husband is in the medical field, but at other times I absolutely hate what he knows. He tries very hard to cover up his feelings and answer my questions honestly. After shedding many tears last night, I have decided to look at some of my vows from several years ago. My vows will continue to stay the same, but I will be adding a few new ones. One vow is to come home on time from work 3 days a week (I often work until 5:00 when I am finished at 3:30). In doing this, mom and I will be able to go shopping. It will also provide her with a break from watching Logan and Lainey for an additional hour and a half. Another vow is to do even more to help her...whether it be to pick up groceries, pick up her medications, take her out to places she needs or wants to go, wash her dogs, vacuum, etc. I want her to be less stressed, less worn out, less out of she can be here for more years to come. I also vow to not dwell on "what mights" and "what ifs". I will enjoy the time we have together....and try not to focus on what I will do with myself when the time comes.

With all of the news we received at the numerous doctor appointments over the past few days, I can say that we are overall thankful for what God has given us. We still have each other and we are still hanging in there! Thank you for all of your prayers for our family. Please continue to pray for Lainey and my mom, Gigi! We feel all of your prayers daily!

With Love,



Julie said...

Wow, what a busy day. Congratulations to Lainey for gaining so much weight. I'm glad her clinic appt went so well.

I'm sorry that your Mom's appointment didn't go as well. It sounds like she couldn't ask for a better daughter than you.

I'm keep you all in prayer.

Katey said...

I don't have mucous-like stuff coming out of my eyes, but I do have LOTS of tears that come out at random times. Especially when I sleep, my right eye just constantly pours out tears. It's really weird. I don't know if it's a CF thing or not. I've never been to the eye doctor (fear of them), and I've never mentioned it to my CF doctor either! I thought maybe it was sinus-related, but it happens when my sinues are perfectly fine.

I'll be praying for your Mom.

Aspiemom said...

DeAnn, I'm so sorry that the news on your mother wasn't better. Your relationship with her sounds like mine with my mom.

I'm glad that the other appts. went well.

I have the eye stuff going on, too. Well, in the AM I clean out the center of the eyes (which I've attributed to allergies) but my eyes have gotten so they "cry" alot. From the outer edge, like Lainey's. I've never mentioned it to a dr. and don't know if it's a CF thing.

Leaving work earlier sounds like a good plan. What medical field is your husband in? My dad was a raditation therapist.

Now I know where Lainey gets her beautiful eyes! From YOU!

Man, it's FREEZING here in GA today, isn't it?