Feeding and Aerodigestive Appointments

Hello all!  As promised, here is an update on Mr. Colin:

We headed down to Richmond, Virginia a few weeks ago to have Colin evaluated by the team at the Pediatric Feeding Institute. This has been one of the biggest challenges for him and myself since he's come home from the hospital. It's not that he isn't interested in food, it's that he has a very severe oral aversion and is trying to protect himself. There is also a psychological aspect to it as well, so we will be working with many different people in different fields.  When we went for our consultation, we met with a Nurse Practitioner, a dietitian, a psychologist, and a therapist.  I'm not going to lie, it was very overwhelming. We had to answer many questions and by the time we got to the point where they observed Colin's eating habits, he was exhausted.  He just sat in the high chair and cried, so the therapist and psychologist concluded that he wasn't ready to be offered actual food and that we should just be offering him a dry spoon for five minutes, three times a day.  Now when we see Occupational Therapy, Colin is very interested in eating what is offered to him, and he's interested in eating at home as well.  So we are doing a combination of things for now.  If he doesn't seem interested in eating, we do exercises to help with his oral aversion, and when he is interested, I let him eat what he wants.  We have been put on the waiting list for their day program where we will go for 6-8 weeks, we will go from 9am-2pm and they will feed him three times during that period.  We will most likely stay at the Ronald McDonald House while we're down there.  Actually going down for our evaluation was a little overwhelming, reality hits when you realize you will be away from home for that long, but this will be the best choice for Colin and helping him overcome his oral aversion and start eating by mouth.

Then today we had Colin's Aerodigestive appointment.  Over a month ago, Colin had his hernia surgery and while he was under, his ENT doctor checked his airway and reported that all looked "fantastic".  She wanted us to come into clinic as soon as possible, and that was today.  We met with his pulmonary doctor, his ENT doctor, and the GI doctor and the appointment went amazingly.  They are happy with his growth, with his respiratory status and they want to go ahead and do a sleep study. This entails Colin coming into the hospital overnight, they will cap off his trach, attach all sorts of electrodes and sensors, and monitor his sleep.  After the study, the results will be sent to his ENT doctor and if all looks good, we will come in for an overnight stay where they will remove his trach and monitor him overnight and if all is good, send us home! The stoma (or hole in his neck) should close on its own, however, if it does not close within six months, they will have to surgically close it. This is all very exciting for us, but also very scary. We haven't known anything other than the trach, so we will have to adjust. Please pray for Colin over the next few weeks/months as he has the sleep study and, Lord willing, the decannulation. Thanks!!

Krysten

Surgery Update

What's this?  Three posts in just a couple of weeks!  Wowza!  As I'm sure you already know, Colin had surgery this morning to repair a right inguinal hernia and umbilical hernia and to check out his airway.  We were there bright and early at 6:15am (I had my alarm set for 4:45am and woke up at 4:44am).  Colin was more than happy to be woken up at 5am, he had no idea what he was in for today.  Our biggest concern was how Colin would react to be taken away from us and how he would react when he woke up and we weren't there.  We decided to let them give Colin Versed to calm him down a bit and I will definitely be posting the video I took of him once it started to kick in.  To say he was a little loopy would be an understatement.  He was just fine to be wheeled back into the operating room, he had his binkies so all was well with the world.  About 15-20 minutes later I was called up because his ENT surgeon was on the phone.  We'd never had a phone call before so we were immediately worried, but she was just calling to give us her update instead of coming to see us.  She used the word "fantastic" when describing his airway, no narrowing, no granuloma, no floppiness.  Praise the Lord!!  She said that she wanted to get him into clinic ASAP to discuss decannulation.  I'm hoping we can schedule his sleep study sooner rather than later.  We had already discussed getting his trach out when they believed he was ready and not necessarily having to wait for the spring.  The sooner he gets it out, the sooner his stoma will close and he can start leading a more normal two year old life! I can't even imagine giving him a bath without worrying that water will get into his trach!!

We waited about another hour and a half for the other surgeon. He told us that his part of the surgery went great and he only had to repair the right side.  He gave us his instructions and said that he could pretty much go back to normal activity.  Another 45 minutes of waiting to see our boy and we were brought to the room where he would be monitored and released to go home. We were so glad that he was not crying when they brought him in.  He was still a little out of it so he just laid in the crib and watched Mickey Mouse.  After about an hour, he was doing just fine and they discharged him home. He was a little cranky and still a little loopy, took a nice nap when we got home, and is now acting like his normal self.  He is having issues squatting down to pick something up, experiencing some pain and discomfort. Other than that, he's doing wonderful!  Thank you so much for all the thoughts and prayers!

The Next Steps

Hi Everyone!

When Colin was discharged from the hospital, he began seeing three in-home therapists, Occupational Therapy, Physical Therapy, and Speech Therapy. He has been discharged from Speech Therapy and will soon be discharged from Physical Therapy since he is age appropriate.  He will also soon graduate from BPD Clinic since all of his needs are now met through Aerodigestive clinic, he's graduated from Neurology, and has made huge strides in other areas as well.  I am so amazed at his progress, he has come so far from that hospital bed.  Now we are anticipating decannulation sometime in the near future, Lord willing.  On February 5th, he will have hernia surgery and while he is under, his ENT doctor will take a look at his airway.  The last time she did a bronchoscopy, she cut out a big granuloma and advised us that his tracheamalacia was much improved.  We are hoping that all looks well and that we can then schedule a sleep study which will determine if the trach is ready to be removed.  We're not sure the timeline yet, but hoping sooner rather than later.  We hope, then, that the stoma will close on it's own, if it does not, he will have to have it surgically closed.

At the end of February, we will travel to a feeding clinic in Richmond, Virginia for a consultation.  Colin will then be added to a wait list in either Richmond or Evansville, IN to be part of an intensive feeding clinic where he will be fed 4 times a day, 5 days a week.  That is our next big hurdle, getting Colin to eat by mouth.  Once he is taking all of his feeds and fluids by mouth and gaining weight, he can then get his g-tube out, but that won't be for a while!

 Someone doesn't enjoy OT

Other than that, Colin is your typical two year old.  He is full of energy, strong-willed, and desperately wants to be independent.  He no longer wants me to carry him, but yells to walk until I put him down, he has his own taste in music, and knows how to navigate a tablet or smartphone better than several adults that I know.  He loves to dance and sing and hates to wear clothes.  He for sure has a temper and that leads to time-outs, which don't really phase him because he's a total stinker.

Colin selfie

Thank you all again for your thoughts and prayers.  I'm told often how much people enjoy these updates, so thanks for reading!  I'll update again after his surgery.

A few of my Favorite Things

I'm changing things up a bit.  Since I know so many new mamas and mamas-to-be, I've decided to share some of my most favorite products and businesses.  Some of these are for your typical kiddos and some of these are for my trach and tubie mamas.  So without further ado, here they are (in no particular order):

Aden + Anais Soft Muslin Swaddling Blankets: These are a MUST HAVE!! These are the perfect gift for any baby shower.  Colin absolutely loves these, so does my nephew Finn.  They are so soft and breathable and one of my all-time favorite gifts (thank you, Krista Tevar)

Wubbanubs: Seriously, the greatest invention ever. Colin could always find his binky at night and they were always easy to spot if they were dropped out the stroller.  No rolling binkies!!

A Projection Mobile: Colin loved his mobile that projected images on the ceiling and it also played music.  How perfect is this??

Scout from Leapfrog: Not only do you program Scout to say your child's name, favorite animal, and favorite color, but he also plays 15 minutes of bedtime music, usually just enough time for Colin to fall asleep.

Lcaps: These are for my trachie mamas. If your child is capped, you can get an array of colors instead of the boring white one they give you.  They're a little flimsy though and Colin shoots them off sometimes if he coughs hard enough.

Custom Trach Covers: These are amazing for when your trach baby wants to take of their humivent, Passy Muir, or cap.  The fabric is breathable and I also think it helps keep out the germs!

Pretty much anything from Adorabelly Design: They have tubie covers, trach pads, leg warmers, and so many accessories for your tubie or even typical kiddos.  They are definitely worth a look!

An Oil Diffuser: You know I wouldn't make a post like this without promoting my business! Honestly, any oil diffuser will work, but let me tell you, we started using the Scentsy oil diffuser in Colin's room before cold and flu season and he has not been sick all winter (by this time last year, he'd had 3 trach infections)!! Now, I can't tell you for sure if it's because of the diffuser, but I did research what oils were good for the respiratory system and I've been primarily diffusing lavender, eucalyptus, and peppermint oils. I'm a believer!

Custom made shirts from LaLa's Boutique: Have a special event for your kiddo or just have a fun idea for a shirt?  Get a custom made shirt from these lovely ladies.  Melissa and her mom are awesome, I'm sure you've seen some of their amazing shirts on Colin (Melissa and I worked together :))

As you can see, I don't have a lot to add in the feeding category, but if you are nursing, I would definitely recommend getting a top-of-the-line pump (especially if you plan on going back to work after baby).  I had one nurse even tell me that she purchased a Medela Symphony pump (these go for about $2,000) off of Ebay (obviously, you buy the accessories new) and re-sold it.  I rented one from the hospital and it was a LIFE SAVER, especially since I was only pumping for the first several months. Also, two words: Nursing Bras.

That's all for today, hope this was helpful!