Family- medicine for the soul

WOW! What a busy week we have had, I promise that isn’t why haven’t been updating though. Our internet here at Ronald McDonald isn’t the best in the world and I have been having trouble getting my computer to stay connected; anyway getting back to our busy week. Monday Bart and I brought the girls to the Krohn Observatory to see the butterfly exhibit. It was truly beautiful to be surrounded by some of Gods most delicate and unique creations, kind of like Gabby herself. Tuesday Bart’s Granny Dolores and my Granny Inez and my dad Shane all came in to visit. That really seemed to lift everyone’s spirits including Gabrielle’s. My dad and Granny Inez only got to stay a few days but having them here really made me feel like this was almost home for a couple of days. Granny Dolores will be here the rest of our trip to be a tremendous help to Bart and I. I honestly don’t know what we would do without such an amazing lady in our lives, for those of you who might not know she watches Gabby everyday while Bart and I are at work. We are forever grateful to her and love her to the ends of the Earth! Wednesday we all met at the Cincinnati Museum Center which has 3 different museums inside the old Union train station. We toured the Cincinnati Museum and the Natural History Museum but decided to skip the Children’s Museum because Gabrielle is confined to the stroller because of her external fixator. Thursday we decided to just have a day to hang out and spend time with our family which is what Bart and I wanted to do more than anything. They have a grill here at Ronald McDonald so we grilled everything we could think of and made potato salad and baked beans, yummy! It was so nice just spend a little time in the kitchen and sit down to a family dinner together and fellowship. It was exactly the medicine that my little family needed to rejuvenate us a little bit. Friday Gabrielle had an appointment with Dr. Alam and we also got to meet one of our OEIS friends named Gracie and her parents. After getting to talk and share stories with Gracie and her family we decided to walk the few blocks to the zoo and spend our afternoon there, the weather was perfect. Gabrielle had a great time seeing all the animals and being outside for a bit. Saturday we decided to drive out to the outlet mall in Monroe, Oh and spent most of the day shopping around. This morning we ventured out to find a church to attend mass and then made a trip to Wal-Mart to pick up a few things for Bart to cook a jambalaya, so that we can have another little piece of home.

Krohn Observatory

At Gabrielle’s appointment with Dr. Alam Friday we addressed a few concerns that Bart and I had. First being the Ditropan that she has been taking for bladder spasms. If it has a side effect listed she has had it, especially the nightmares and not resting well at night. When she was started on it a few weeks ago she was taking 2 mg three times a day well Bart and I dropped her down to 2 mg twice a day. Dr. Alam told us that there is two reasons he chooses to give Ditropan 1) to help the bladder grow and expand 2) for bladder spams. He assured us that Gabby’s bladder was plenty large and that he felt comfortable with us stepping down her dose to 1 mg twice daily and then down to just as needed when we notice spasms. We only gave her 1 dose of the 1 mg last night and she still woke up but rested for long periods throughout the night. One question we had was what all would be done in the next surgery in a couple of weeks when she gets her external fixator removed. Dr. Alam told us that he would go through the whole where her suprapubic tube opens into her bladder to perform a scope. He wants to do this to see how her bladder is healing and draining. If the urethra he created had closed then he will have to see if he can open it again and possibly add a small piece of plastic tubing to hold the urethra open so her bladder can drain that way. He is also planning on leaving the suprapubic tube in place. Another topic we talked about was the suprapubic tube which is connected to a urine bag by a long tube. It had been mentioned that she might have to go home with the tube. I kept wondering to myself how she is going to have any independence with the huge urine bag tagging along. Well he told us that it would only be the piece of tube that goes directly into her bladder that we would go home with. It is only about 6 inches long and would be hidden in her diaper and would stay clamped off. He is calling the suprapubic tube our safety net. If for some reason the urethra closes up again then we would have the SP tube as an option to drain the bladder when needed. We also met with Tina her nutritionist about the NG tube and her feeds. We had been keeping a diary of what Gabby was eating and drinking throughout the day and Tina seemed happy about what she saw. Gabrielle is still not up to the 1100 calories a day that they want her to take in but she had gained a couple of ounces she we were in the hospital a week ago. Tina said if we felt confident she would start eating well that we could pull the tube out. Bart and I decided that since the tube doesn’t seem to be bothering Gabby anymore that we would just leave it in until after the next surgery in a couple of weeks and remove it before we come home to Louisiana. I am going to put a call in Monday to find out the specific date of the next surgery so I will keep you posted on that. Tomorrow Gabby’s Nanny Kate will be coming to visit for the week… we are very excited to see her! While she is here Bart and I are going to take a night to ourselves and stay at a hotel downtown and go out on a date for some much needed mommy and daddy time. Please pray for Kate to have a safe flight. Also continue to pray for restful nights to come to our sweet Gabby. And that we can get her off of this Ditropan it isn’t a friendly medication to her little body. It steals away the light in our little girl and we want so badly to have our happy go lucky, dancing, singing, giggly Gabby back.

I would also like to report that Carter got his external fixator removed this week! YAY Carter! I know that his mom and dad are over the moon to have their little boy in their arms again. Please continue to pray for Carter as they start to take him off of all the sedation and pain medications they had him on, this can be a long and painful process. He has already been through so much in the last couple of months that I pray the withdrawl process is easier than they predict.