Gabe is being worked up for a variety of potential diagnosis. He is still requiring oxygen and what we suspect is reflux and aspiration is beginning to take a toll on his pulmonary function. They did an impedence probe study to look at the reflux issue and the results are pending. Pulmonary and ENT are involved to look at his airway. Sometimes in Down's Syndrome their trachea can close off related to poor muscle tone. They may do a bronchoscopy and sleep study if they think this is an issue after the reflux is addressed. This morning, we also noticed blood in Gabe's stool for the second time. GI is now consulting to look at what could potentially be causing feeding intolerance and blood in his stool. They will need to rule out Hirschprung's and food allergies. They pulled his NG tube and put in an NJ tube today. An NJ tube is inserted thru the nose down to the jejunum part of the intestines. With the tube being inserted this far, he should not reflux. The down side is, feeds have to be continuous from a pump. We are hoping to be able to offer Gabe 10ml of formula from a bottle a couple times a day. These tastes along with a pacifier will hopefully allow him to continue to use those facial muscles that will be so important for his speech later on even though he will be getting continuous feeds. They are also switching his formula to a milk protein free alimentum in case of allergy. Overall he had a good day. He seems comfortable and was awake, alert and playful. We have to stay patient while we're collecting all this information. Thank goodness we are at a great Children's Hospital and live so close. Special thanks to Kelly for organizing the Buddy Walk in Gabe's honor. https://www.syssolutions.com/CincinnatiWalk/Main/MyTeam.aspx?Reset=Y
Oh, Michelle. That little guy is a super strong little trooper. You're doing a great job! Keep it up with the feedings. It's really hard, but will pay dividends in the end. Micah is almost 20 months and is just now taking solids after letting nothing into his mouth since age 4 months (when he had his heart surgery and a paralyzed left vocal fold sent him over the top to an oral aversion). He has had a GJ tube since then until last week when he graduated to a G tube. The continuous feeds are a hassle. What type of pump are you getting when he's discharged? If you have an option, ask for the Zevex Infinity because you can also get the "super mini backpack" that makes the pump a lot easier to transport. Micah now wears his when he's being fed (which is basically now at 2 hours on, 2 hours off during the day and continuous overnight... gradually progressing to bolus feeds). Thanks for the updates! Still praying for your sweet little Gabe.
ReplyDeleteStill praying for Gabe and for you and Justin! You are such wonderful new parents and I know Gabe knows it too :) Hang in there and let me know if I can do anything, even just bringing you something to eat at the hospital. I'm just around the corner.
ReplyDeleteWow you are going through lots of stuff. We have reflux to but they think it's just because of the ng and that hopefully he will grow out of it. We are looking to go the g tube route though. Praying that they find some answers and can help the little guy out. Not fun having all of the tests done..but at least you are at a hopsital that you like and trust. We are having lots of test done now too...but this time not for our sons heart but for eyes. We must keep the faith that things will get calmer and better:) Hang in there Gabe!!
ReplyDelete