March 31, 2010

Well it has been a long month for Gabrielle, Ashley, and I. We began the month with Gabrielle being admitted to the hospital for a 14 day round of IV antibiotics and we are ending the month 6 days into a 14 day round of Augmentin. Just to put a few number of things, this is Gabrielle’s 3rd 14 day round of Augmentin since the first of the year. In the month of March Gabrielle spent 21 days in the hospital. In addition, Gabrielle had 5 visits to doctors’ offices during March.

Today we took Gabrielle to the GI doctor and CF Clinic. At the GI doctor we learned that the test for Milk and Soy allergies came back normal, Praise God! We are extremely thankful that we don’t have be concerned with a milk allergy at this time. The second test we were waiting to talk to the GI doctor about was the stomach empting test. Gabrielle’s stomach does have a delay in emptying. Thoughts are that the delay is from the inflammation that was found in her small intestines when they did the EGD. If the inflammation goes away then the delay in empting the stomach should resolve also. Originally it was thought the inflammation was from a food allergy, however the only food she was getting at the time was milk based and the test showed no milk allergy. The inflammation in her small intestines could be a result of her continually being sick this year. One possibility is that there is an overgrowth of bacteria in her small intestines. So to treat this and hopefully eliminate the delayed empting, after finishing this round of Augmentin she will go on a round of Erythromycin. The Erythromycin is used to speed up the empting of the stomach. The GI doctor is also making a referral for a Food (Eating) Study which will result if a referral to a Food Therapist. We also talk about the G-Tube and Nissen Surgeries that began at the end of February. The GI doctor is not a fan of the Nissen surgery in general but feels it will be beneficial for Gabrielle to have when she has a G-Tube placed. He also still feels that Gabrielle needs a G-tube as soon as possible. He feels that by improving her nutrition it will also help resolve the stomach empting delay.

The visit to the CF Clinic today was a continuation of the G-Tube and Nissen surgery talks. After much prayer, research, and discussions Ashley and I have come to the conclusion that it will be in Gabrielle’s best interest to have a G-Tube placed. We still have not made the final decision about the Nissen surgery, however it is looking like there is a good possibility that it will need to be done at the same time as the G-Tube. There is still one more test that could be run that would give us a better idea about the severity of her reflux. The GI doctor, CF Clinic, and Surgeon are suppose to discuss this test and let us know how beneficial it would be to have done. Also, our decision will take into account the possibility of have to have a second surgery to have the nissen done if it is not done with the first surgery.

As far as timing Ashely and I would like to wait until the beginning of the summer to have the surgery done. However, the doctors feel Gabrielle is at a critical state right now and could decline rapidly if she has another big illness. This is because she does not have any nutritional reserves to spare when she gets sick. We will go back to the CF Clinic in 2 weeks so we can evaluate how she does between now and then and to give us an better idea of how the next 2 months would be if we waited.

Please pray specifically…
…that Ashley and I make the right decisions upon consultation with the doctors
…that Gabrielle starts taking her enzymes by mouth again
…that Gabrielle starts eating solid foods
…that Gabrielle starts eating more food each day
…that as a result Gabrielle will gain all the weight that she needs to
…that Gabrielle can get over her illnesses

Thanks,

Jeff, Ashley, and Gabrielle

March 22, 2010

We got to bring Gabrielle home from the hospital today. What an adventure we have been on the last 22 days. As in the last update, last Tuesday Gabrielle decided to stop taking her enzymes by mouth. Because of this, Jeff and I put her on pedialyte to keep her hydrated. Jeff contacted the doctors offices on Wednesday to let them know what Gabrielle was doing which landed us back at the hospital. Gabrielle was given pedialyte the rest of Wednesday and the first part of Thursday. After talking with the CF doctors on Thursday as well as the dietician, it was decided that Gabrielle would be put on a new formula, Peptamen Jr. 1.5. This new formula is hyperallergenic and has the same amount of calories as her previous formula. As far as the enzymes, they have given us a powder form to put in her formula that will digest the formula prior to her taking it. We will use this until we can teach her to retake the enzymes by mouth. It took Gabrielle a while to take to the new formula but by Friday afternoon she had gotten back to her amount per feeding that she had previously been taking.

Friday afternoon the GI doctor had scheduled some blood work to be taken to look for possible food allergies, specifically milk and soy. This is one reason for the change in formula. He saw Allergic patterns from the biopsies that were taken from her small intestines during her scope the previous week. He also scheduled a stomach emptying test to see how long it takes for food contents to empty through Gabrielle's stomach. Gabrielle had to drink formula mixed with radiation fluid. Then she laid on a table for 2 hours for pictures to be taken. Good thing was she was tired and took a nap.

We have not heard from the GI doctor about the results of the blood work. We were told that the emptying test did show signs in the abnormal range which means Gabrielle's stomach does not empty as fast as it should. We also have not discussed this with her GI doctor so we are not sure what he will do with the results of this test.

Gabrielle has lost some weight since her last CF clinic weigh in last Monday. We return to both the CF clinic and GI doctors next Wednesday, March 31. At this time we will discuss Gabrielle's nutrition and what the next step is in her plan of placing a G-tube, as well as the results from the tests.

Please continue to pray for Gabrielle as we battle her nutrition and that we can get her eating solid foods again.

With Love

Jeff, Ashley and Gabrielle

March 17, 2010

Gabrielle was released from the hospital on Monday (3/15) only to return to the hospital today (3/17). All of the respiratory issues were taken care of over the past two weeks. However, the GI and eating issues remained. Gabrielle was eating and gaining weight so they released us, although her eating was on the decline and it was a “bad” day on Monday when they released us. I even told the doctors she was having a “bad” day before they released us. Yesterday (3/16) the only times we could get Gabrielle to eat was while she was sleeping. When she was awake she would gag and spit-up/throw-up. She would also start gagging when we were placing her in the high chair.

After talking with the CF doctors today they said Gabrielle needed to come back to the hospital to figure this out so she does not lose too much weight. The doctors want to start talking about surgery but we are going to start by making the doctors look at the results of the EGD that was done last Friday (3/12), the preliminary results showed a possibility of food allergies. Once we figure out what is causing Gabrielle’s issues currently then we will talk about what the doctors want to do.

Thanks for your continued prayers.

Jeff, Ashley, and Gabrielle

March 12, 2010

We found out this morning that Gabrielle is scheduled for an Esophagogastroduodenoscopy (EDG) and Bronchoscopy at 10:30 this morning. The EGD is an examination of the lining of the esophagus, stomach, and upper duodenum with a small camera (flexible endoscope) which is inserted down the throat. They are looking for inflammation from reflex and/or to see why she is refluxing still. The Bronchoscopy is being done to look at her lungs and to see if they can collect and identify any bacteria that may be in her lungs. The Bronchoscopy is only being done since she will already be sedated.

I will try to send a more detailed update tonight.

Leaving everything in God’s Hands,

Jeff, Ashley, and Gabrielle

March 3, 2010

Gabrielle had her PICC line placed yesterday and everything went good. We are now in the routine of waiting on the next dose of medicine, round of respirtory therapy, or next feeding. In between each of these we try to keeping Gabrielle entertained. We are still having issues with her gagging when we give her enzymes and I assume we will have the same issue when we try feeding her yogurt and solid foods. We have talked with the CF Doctors and dietitian about it and we are waiting for the GI doctor to come and see her.

The dietitian has set eating and weight gain goals which sound achievable and hopefully they will help us work with Gabrielle so we can meet them. The eating goals are solid foods, 1 to 1-1/2 teaspoons of oil, 2 packets (1/4 teaspoon) of salt, and 24 oz Boost 1.5. Her weight gain goal is 1/2 ounce per day. We also have increased her enzymes to 4 capsuls prior to each feeding.

March 1, 2010

In the last update (2/24/10) we sent about Gabrielle we mentioned that after day nine of her second round of Augmentin the doctors were still concerned about her cough. Well today was her last dose of Augmentin and the sound of her cough has not improve and other things started over this past weekend such as spitting up mucus, gagging on solid foods and her enzymes, runny nose, and her breathing occasionally sounding like a purring kitten. As we were instructed to do by the doctors, we called the CF Clinic this morning. And as expected we made our fourth visit to the clinic in less than a month.

Since Gabrielle has been on two 14-day rounds of Augmentin since the first of the year and since she has been unable to get rid of her cough and other things, she has been admitted to Vanderbilt Children’s Hospital for the second time in 4 months for IV antibiotics. Her cough and other symptoms are such that if she did not have CF nothing would typically be done about them. However, since she does have CF we need to take the extra precautions and give her stronger antibiotics that target specific bacteria that are bad to CF patients. While in the hospital we will also be ensuring her reflux is under control and is not contributing to her cough and spit ups. We will also be talking with the dietitian and doctors about how to get Gabrielle to eat solid foods. Our goal is that at the end of this hospital visit is that we will be back on track and ready to go for at least another year without having to return to the hospital.

Today after the CF Clinic visit we were given a room and admitted to the hospital. After that Gabrielle received a standard IV so she could start her antibiotics tonight and then she had chest x-rays taken. She has already had one of her antibiotics and is getting ready to have her second one in a few minutes. She has also already had one round of respiratory therapy. Tomorrow at 1pm she will be sedated so she can have a PICC Line inserted for the remainder of the IV antibiotics.

Thanks for your continued prayers.

Jeff, Ashley, and Gabrielle