It’s Nancy here again to give you a Haddie Joy update and to share a prayer request. I just got off the phone with a very exhausted Brooke and there are a lot of tests going on with Haddie Joy right now. It’s a lot for the doctors to work through and it’s a lot for Brooke & Peter to understand, so I apologize in advance if I mess up any of the details.
Brooke & Peter were very blessed to be able to get into the CADET Clinic in Vanderbilt last Thursday afternoon after someone else canceled an appointment. That alone was an answer to prayer. Originally the earliest that they could get in was April 28th!
Haddie Joy has always made a lot of noise (choking noises) while eating, but she seemed to be gaining weight until the last 2 weeks. They realized that she had some pretty serious acid reflux going on and prescribed some medicine for that which did seem to make her more comfortable. Brooke said that she had one REALLY good day.
But other than that, it seemed like her eating was getting worse. It seemed like Haddie Joy just didn’t want to eat. They weren’t sure if it was because the acid reflux was causing her so much pain that she didn’t want to eat, if there was some kind of physical problem causing an issue, or if there was a neurological reason that she didn’t have a good suck/swallow. With all of Haddie Joy’s various doctors’ appointments, they keep a really close eye on her weight, and Brooke noticed that although Haddie had never nursed for long periods, it had gotten so that she was barely nursing for like 3 minutes at a time. Brooke was constantly trying to feed her to a)make sure that Haddie was getting enough and b)to try and keep her own milk supply built up. Nonetheless, when Brooke & Peter took Haddie Joy to Dr. Campbell, they were concerned when Haddie Joy had not gained any weight in nine days despite their best efforts. (She should have been gaining about an ounce a day I think.)
Other tests had already shown that Haddie Joy probably had tracheomalacia and was aspirating (although things weren’t going all the way down into her lungs), so Brooke & Peter just really wanted some answers to figure out how to best help Haddie.
Tracheomalacia is a less common condition where an infant has weakness and floppiness of the walls of the windpipe (trachea), which are present at birth, causing breathing problems.
Brooke & Peter were very concerned at this point so they tried calling the CADET Clinic again and that’s when they were able to get an appointment there that very day! The CADET Clinic is a wonderful resource for parents of children with serious issues. Brooke & Peter are very thankful for being able to get Haddie in with this team.
The Complex AeroDigestive Evaluation Team (CADET) at Monroe Carell Jr. Children’s Hospital at Vanderbilt is known for a comprehensive, interdisciplinary approach to evaluating and caring for chronically ill children with complex airway (voice box, windpipe), pulmonary (lung), upper digestive tract (esophagus, stomach), sleep, and feeding disorders.
Once they got there, the team of doctors all compared notes and came up with a plan for which tests needed to be done and how to best proceed. (I might be getting some of this out of order.)
They gave Haddie Joy a feeding tube, which really seemed to help and admitted them to the hospital for further tests. Sadly the hospital is at (get this) 210% capacity so they actually stayed in the ER sleeping on cots until a room became available on Saturday. Brooke says that they do well to sleep for 30 minutes at a time.
They’ve done a scope and the ENT was able to confirm that Haddie Joy DOES have tracheomalacia. Haddie only had a 10% opening in her airway, that explains a lot! They will do a CAT scan today (Tuesday) to take a look at her arteries to see if there could be a problem with those that needs to be surgically corrected. The way Brooke described it, it was like the arteries were crowding/blocking the airway, and they might be able to tie them in a bundle and prop them out of the way or something, but it might also be that she needs a trach tube to help her breathe.
Even though they know that there is definitely a physical issue (the tracheomalacia and the severe acid reflux), they still haven’t been able to completely rule out neurological issues. They are just thankful right now that she has begun gaining weight with the feeding tube.
Brooke thinks they may be home in another day or two once they finish this next round of tests (they will be doing a GI scrape to check for allergies) and the medical team comes up with a plan of action for Haddie Joy.
So here’s the prayer request:
Please pray for them to all get some sleep & rest. They are going to be going over a lot of results from Haddie’s tests, discussing options, etc… Please pray that they will be able to keep up with all of that information and think clearly to make the best decisions for Haddie.
Brooke & Peter really don’t have the time or energy for phone calls right now, but please know that they cherish your prayers, love, and concern. You all are a blessing to them.