**Ramsey** — The Bump
Special Needs

**Ramsey**

It's so good to have someone here that has been through some of this!

Drake has to go through many dilations because his TEF repair was so tight he hasn't been able to swallow.  There is only a very small area now that is tight so the surgeon is really pleased.  I was so surprised to see that Tucker has always been eating!  That's awesome!  You really gave me hope!  I put this in my update below but we are going to try some oral stimulation with Cheetos!   I'm pretty excited!

We have to get a bronch done fairly regularly because his airway was so floppy. 

And, no, these things never get easier! 

However, we got so lucky today with the OR nurse that came to get him.  She is the first to actually take some time to play with him and earn some trust instead of ripping him out of our arms and taking him away crying!  He played peek-a-boo with her a little then she put her arms out and he cautiously went to her then put his head on her shoulder and they walked in to surgery!  Surprise  It was amazing!  That is usually the hardest part for all of us so I was sure to thank her afterwards!  

Does Tucker only get dilations when there is an issue?  I can't wait for those days!  I understand the frustration with the not-so-common cold. For a while, every time Drake gets sick he will probably end up in the hospital.  At least, that's been our experience so far.  It sounds like Tucker has the same problem my husband does.  His colds always turn into chest infections!  No fun!

Re: **Ramsey**

  • I completely agree - when they take him away to go into surgery is always the hardest. We are lucky (in a perverse way) that we know almost everyone in ped. surgery and the ER at this point! LOL! When we went into the ER recently for my bleeding, the Drs all kept stopping us asking what was wrong with Tucker. heehee.

    I'm SO glad to hear that things went well and that you guys are going to start the oral stimulation. That's wonderful! Yes, Tucker was very fortunate in being able to start solids when other kids usually do, but we have to be pretty careful about what we give him still. He LOVES to eat and totally scarfs it down, no matter what I try to do to get him to slow down. He takes one or two bites, if we're lucky, and down it goes ... or doesn't. He's gotten good at making himself spit up most of what gets stuck so we've only had two emergency dilitations - one for a piece of turkey meatball that had a f*cking tiny piece of bone in it and the second time for broccoli pieces that had backed up and impacted. He had one other after the first just to make sure that the trauma didn't make it close up.

    One of the nurses on our ped surgery team has a 3 year old son with a TEF who has been dialated over 60 times already so I thank God that we've gotten off easy. I thank our surgeon for that. Tucker was able to come home after 10 days of being in the NICU and they did just a fabulous job with his repair.

    Because of the TEF, he's got the bronchio and trachael milacia and so we were ending up in the hospital with colds becoming pneumonia or bronchiolitis but this year, knock of wood, we've been great. We have the Airway Clearance Vest that we use twice a day for 20 min. and it's made all of the difference in the world for us. I told my pulmonologist that he had single-handedly changed the quality of Tucker's life. We are still on the Flovent and Albuterol twice a day and the Duo Neb up to 4X a day when he's got a cold but he's taking less meds overall and he's not been in the hospital for a respiratory issue yet this cold season. We've actually only had to see the Dr. once for a sick visit since he started the vest three months ago. That's a record for us - we were there almost every other week last winter. UGH!

    Both Tucker and Drake are going to continue to get stronger and they are going to learn to chew, swallow and love their food just like everyone else! It make take us a while longer but we're both going to get there. I'm really, really glad to hear that Drake's surgery went well. Please keep me updated! It is so great to have another TEF mom on here!!

    BabyFruit Ticker
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