I started feeling a great heaviness and a flood of emotions last week when Brielle was admitted to the hospital for 3 days. I didn’t initially recognize where those feelings were coming from, other than having serious angst about Brielle’s medical issues. Then it dawned on me that the last time I had a child admitted to the hospital and the last time I also spent the night at a children’s hospital our child didn’t come home with us. He died there and it was the saddest time of my life. Brielle’s medical situation is not even in the same realm of severity, as Barron had a genetic condition that was fatal. Brielle has already been tested for SMA and does not have this awful condition. She does have some unknown GI issues that are quite disruptive to her and our life at this moment though. She was admitted for an extensive clean out via tube through the nose and was administered the same meds given to adults prior to a colonoscopy.
It worked. Thank God. Every other supposed fool proof clean out method including fleets and entire bottles of magnesium citrate, resulted in very little to no movement. Seriously, 10 ounces of Magnesium citrate in less than 48 hours along with several other meds and nothing moved. So far, we only know that she has a GI motility problem. No other specifics know. The problem with this issue is that she has a constant state of feeling full, thus not wanting food. This has always been a problem, even as a baby. To make it even worse of a problem, eating food will often result in discomfort and pain. When this happens often enough a child learns to not desire food because food causes pain. That is where we are at. Nothing moving on its own and a serious aversion to food unless it is very familiar and hasn’t caused pain in the past (the list of foods is always dwindling). We have to supplement with 3 Pediasures a day just to ensure she gets enough calories. She also lost weight while in the hospital.
She is feeling much better now that she is home and food is moving through her digestive tract and is no longer blocked. We have to use lots of meds to daily to keep things moving. If we get major blockage again, we are back in the ER and most likely being admitted, as the ER methods have so far not been effective. Once she was cleaned out it was an optimal time to do some exploratory surgery to get some answers.
We are still waiting on those results. She had to hold still for 6 hours straight. No sitting up, or even moving to go to the bathroom. Not fun for either one of us. Did I mention she was on a clear liquid diet that week on Tues and Wednesday and then no food at all for Thursday and half of Friday. Really, what that means is she went from Monday evening to Friday noon without any real food. I won’t deny that it; that in itself was an awful experience. To have your child, who NEVER asks for food to be begging for food was so hard to watch and experience! But I never left her side. There was no way I was leaving her. I stayed by her side all day and all night. I tried to keep her in good spirits too. we had a number of friends bring us toys, craft projects, and fun things for the hospital before and during the hospital stay. I have to say they were all put to good use and we did manage to get some smiles! Thank you all for being so thoughtful and generous!
We were at Children’s hospital in Dallas. We are so thankful to have one of the top Pediatric GI motility specialists in the country working on Brielle’s medical case. She is a UT Southwestern doctor by the name of Dr. Sanghavi. She is very thorough, attentive, knowledgeable, and intelligent. We are thankful to be in her practice.
Hospitals are stressful even when things are going smoothly. Most of Brielle’s procedures, surgeries, and time in the hospital went smooth enough. Through her tears and my angst anyway. However, after her exploratory surgery her heart rate had issues for about 24 hours. Extreme highs and lows that had the monitor going off every few minutes. That certainly kept me up that entire night. It would go from the 60’s to the 120’s in a matter of seconds.
They believe it was the anesthesia that caused the problem. I am thankful they ordered an EKG just to be sure though. After 24 hours her heart returned to normal. Thank you God!
We are very thankful for all the friends and family that have been of great support to us these past few weeks. She is happy at home now. Eating well enough (although we are charting everything to ensure she is getting enough calories each day).
We are extremely thankful my Dad was able to stay the entire week to be with the twins. He did such a great job with them and they are still talking non stop about their time with Papa. We are thankful for the meals from friends, their support, prayers, gifts, and love. It means a lot to our family to have so much love from you all!
Here is a short video clip of Brielle and I arriving home to greet my Dad and the Boys (Justin picked us up at the hospital and spent a number of hours with us that last day): Brielle Coming Home
God is so good! We are thankful the hospital stay was short and everything went well. We are also extremely thankful for good doctors, hospitals, and people that care so much.