On Thursday, Brenna got a feeding tube placed again down her nose thanks to her extreme lack of eating. We're talking one feeding, for example, where she consumed one whole ounce. (Special thanks to Aunt Jennifer who came over to put the ng tube in....because I was not about to attempt that on my own!)
However, the tube has not been so helpful this time, and Brenna is gagging constantly and not keeping much down, no matter how much or how little we're giving her or how slowly or quickly.
Then last night, she developed a fever of 100.1, and it's still running in the 99s today. We also noticed during her bath that her skin was looking very cracked and a little raw on her sides, similar to when she had staph previously.
Between her skin, fever, and the vomiting that has an incredible amount of mucus in it, Brenna is now an occupant on the pediatric floor of St. John's once again. But unlike our last couple of visits, this one is troubling because there doesn't seem to be an obvious answer about what's wrong.
There are a lot of issues going on, and it's going to take more than just a day or two to figure out the reasons.
If you're in the praying mood, we would sure appreciate prayers for guidance for our doctors and prayers that Brenna's body will begin to heal and that her stomach and system will feel better very soon.
Prayers from Georgia!
ReplyDeletePraying from Florida!
ReplyDeleteNot having answers is rough. Please tell Brenna we're praying for her (and her family, too!)!
ReplyDeleteI needed a break from writing and I will be using it praying for that precious little miss who I have fallen in love with. I will pray God gives answers immediately so everyone can work their magic on getting her well and home (and eating again- one method or another) I am so sorry you are dealing with this once again. She is such a special little fighter and she has amazing parents who watch for all the signs to know when she needs to get checked out. Praying NOW! Love you sweet Brenna and get better and stay well!
ReplyDeleteOn my knees...from Aurora, Colorado
ReplyDeleteOn my knees in prayer...in Aurora, Colorado
DeleteI'm in the praying mood and storming the heavens for healing.
ReplyDeletePraying praying and praying for Brenna
ReplyDeleteGod is healing this miracle as we speak! She is healthy and whole.
ReplyDeleteOur family will be praying!
ReplyDeletePrayers!
ReplyDeleteDefinitely praying for answers to all the issues surrounding Brenna health and care right now. Praying for you, Evan, and Connor for God's comforting arm and calming presence.
ReplyDeleteHugs,
Barbara Lyman :-)
Healing prayers for sweet Brenna from Pennsylvania. Praying for all of you and all of Brenna's caregivers.
ReplyDeleteSending prayers and love from Texas :)
ReplyDeleteHope things are back to normal very soon. xx
Prayers for all of you and for Brenna's doctors, too. Hope she's doing better soon!!
ReplyDeleteKeeping her and your family in my thoughts and prayers.
ReplyDeleteKeeping beautiful Brenna and your family in my thoughts and prayers.
ReplyDeleteI admire the strength and determination you and your husband have to be so patient and understanding with everything that is thrown your way. You truly are inspirational people and wonderful parents.
I hope that Brenna starts eating better and improving very soon.
-Jen
Sending prayers. I've got a similar skin disorder, Epydermolytic Hyperkeratosis or EHK and am mom to a son blessed with both the skin disorder and Down Syndrome. when he was born he needed an NGTube like your daughter, he's been had open heart surgery at 10 weeks old adjusted age would have been about 6 weeks old since he was premature. due to complications after his open heart surgery he required a g tube in his stomach when he came home. he has now had that g-tube which was changed to a mickey button for 3 and a half years. he will be 4 years old on the 14th of this month and uses his tube for extra calories and fluids, and he is HEALTHY.
ReplyDeletePlease, just know that 1 day soon your daughter will be healthy too. try to keep her greased up so her skin is soft, and continue to be strong 4 her. God is great and he never gives you more than you can handle even if it does not feel that way sometimes. I held to that during our darkest days. GOD BLESS!
Prayers from our family to yours. May the Lord heal and protect your sweet baby girl.
ReplyDeletePrayers from our family to yours. May the Lord heal and protect your sweet baby girl.
ReplyDeletePrayers from our family to yours. May the Lord heal and protect your sweet baby girl.
ReplyDeletePrayers being sent from Carefree, AZ, for your precious little gal and your entire family!
ReplyDeleteThe Matusiaks
Prayers from our family to yours. May the Lord heal and protect your sweet baby girl.
ReplyDeletePrayers from our family to yours. May the Lord heal and protect your sweet baby girl.
ReplyDeletePrayers from Washington State! We all hope sweet Brenna is feeling better real soon!
ReplyDeletePraying and thinking of Brenna and your family! My son Eric and I were behind you at the Justin Allgaier event in Springfield, I used to work with Evan at INB. You are truly an amazing family. I also took my son to Dr. Conlon a few months ago and we saw the posting about Brenna and I discussed it with my son Eric, we continue to pray every day for Brenna and your family! She is blessed to have such a wonderful supportive family. Thinking of your family, Staci & Eric Britz
ReplyDeleteHang in there....Sending lots of wonderful healing thoughts! You and Evan are doing an awesome job....Take Care!
ReplyDeletePete and Judy Olesen
sad to hear of your troubles as I check in but I will offer my prayers this morning for all of you.
ReplyDeleteThinking and praying for Brenna and your family.
ReplyDeleteMany prayers and postive thoughts for all of your family! May the prayers and positive thoughts wrap you in comfort at this time!
ReplyDeletePraying for you!!! We hope that you find answers soon.
ReplyDeletepraying in Virginia
ReplyDeleteShared on Facebook. Healing thoughts and prayers are coming your way from all over the world.
ReplyDeleteThinking of you beautiful girl. Get well soon x
ReplyDeleteCourtney and Evan, if I can do anything please let me know
Be sure to get some much need rest! The doctors and nurses will take excellent care of her so you do not have to be at the hospital 24/7... big brother will need you at home.......
ReplyDeleteAww God Love Her! Prayers from Iowa.
ReplyDeleteI Am on my hands and knees praying for your daughter!! She will one day be a inspiration to many. You are so blessed. Hang in there Brenna
ReplyDeleteWe're praying for you and Brenna in NC.
ReplyDeletePraying from Chicago!!
ReplyDeleteSuch a precious little girl. Keeping her in my prayers!!
ReplyDeletePraying from tx.
ReplyDeleteSo many prayers coming your way - it just has to be working. We're keeping the prayer chain going for all of your family in this time of crisis.
ReplyDeletePraying for answers for Brenna and peace for all of you.
ReplyDeleteSending Brenna lots and lots of get well soon vibes from her fans in NJ.
ReplyDeleteLots of prayer and best wishes, Courtney. I'm so sorry that poor Brenna is having such a hard time, and that poor Mom and Dad aren't having the easiest ride either :)
ReplyDeletePraying for your sweet baby girl!!
ReplyDeleteGenetic disorders are so frustrating as there is no cure.....just day by day maintenance ...thoughts are with you......
ReplyDeleteWhen Raymond had a NG tube, which he had for about 6 months, he had excessive vomiting, he would gag on the tube and excessive mucus. Both of those problems were helped with the placement of a GJ tube, instead of the food entering directly into the stomach it enters into the intestines, after he became stronger and grew, they moved the GJ tube to a G-tube and now his tube feedings are going great. The down side to a GJ tube is that you cannot consume much food at once as your intestines cannot expand like your stomach, so he was on a feeding pump for 20 hours or so a day in the beginning.
ReplyDeleteYou can count on prayers from Oakford United Methodist Church. We are in Vacation Bible School this week, and the children and volunteers will keep Brenna in our prayers each night.
ReplyDelete