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!

Light at the End of the Tunnel

Hello friends!  Another day, another half day spent at Nationwide Children's Hospital.

First off, we attended Music Therapy today and oh, how Colin loves music (and bubbles)

The person who heads up music therapy has been singing to Colin since the first week that he was in Columbus.  We love the consistency of seeing the same people as when we were in the NICU.  We also see the same speech therapist in both clinics that we saw while in the NICU.

Then it was off to clinic.

Poor guy had to get his flu shot today.  He didn't have to, but I figured that we would just get it over with.  Then it was the typical parade of doctors that we see at his Aerodigestive appointment.

"Can we just get this over with, mom?"

First was GI. We talked about his Impendence study results (which found that his reflux episodes were within normal range).  We also talked about him getting a stomach emptying study to see how he was digesting (which I think is one of his big issues).  We are going to go full swing into a blenderized diet, which we have already started easing him into, but his new GI doctor is all about it.  We've had some problems getting others on board with it, but that's a whole other issue.

Then it was ENT and Pulmonary.  We see Dr. Ramanathan, whom we love (and everyone on the pulmonary floor of the hospital loves him too, it's always good when the nurses love a doctor). After discussing with him that Colin has been capped and handling it amazingly, he wants to go ahead with a sleep study.  Typically when the sleep study is done and IF it's successful, this means that the trach can come out.  He brought up that they don't like to decannulate during cold and flu season, but I made sure he remembered that Colin was not hospitalized one time last winter, so he is willing to go ahead with it, if he's ready.

I am not getting my hopes up.  Colin may not be ready, but the fact that we're talking about it is still exciting.  Everything will be just fine if he still needs his trach for a while.  Sure, I'll be disappointed if the sleep study doesn't go well, but it just means that he needs more time.  I don't want them to take it out if he's not ready.  I've seen stories about kids that have been re-trached and I certainly don't want that to be Colin.

We would love your prayers in these coming weeks/months regarding this.  Prayers that we can figure out how to eliminate his vomiting, prayers for his sleep study, prayers for good news and success.  It is all in His hands.

Dr. Ramanathan's last words to me were, "We're close!  I can see the light at the end of the tunnel."

Love to you all.

Krysten

Update!!

So, it turns out I'm pretty much a blogging failure (much like my attempt at crocheting), but I will try harder! I've heard from a lot of people who enjoy getting updates on Colin (#LLColinJ).

Before we get started, enjoy a cute picture of Colin:

Now, let's start with updates that have nothing to do with Colin's trach or g-tube :)

As many of you know, Colin has been crawling since April, which is awesome, woohoo!!  The downside being that when I put him down, he doesn't just stay there anymore.  He is everywhere and he is fast.  This means we're now working on walking with PT, yay!!  Colin's PT thought it would be beneficial to borrow a walker from our county's Early Intervention friends to help him learn to walk independently.  Here he is with his fabulous PT using the walker:

(Sidenote: notice the giant smile on his face in this picture, this is not typical. Colin is usually a hot mess the entire 45 minutes of his PT.  He will literally burst into tears the moment she walks through the door.  We're hoping he's over that)

He loves using his walker (and his toy walker) and thinks he's hot stuff.  The walker in the picture is actually a reverse-walker, meaning that he pulls it, but he was practicing standing.

Colin also has a lot to say, even though we don't understand the majority of it.  He says lots of words that begin with "B" like ball, book, bubble, baby and his recent favorite letter is "G".  We're getting a lot of "gah" and "goo".  This is pretty good, considering he has a trach and wasn't able to start using his voice until he was about 5 months old.  There are some kids that have trachs that are unable to tolerate the Passy Muir Valve (which means they are unable to vocalize since the trach sits below the vocal chords), so we are very thankful that Colin hasn't had any issues with it.  

Here are some other highlights:

*He got his first haircut from his godmother, Aubrie Davidson

*He can pull to stand

*He is now opening his mouth willingly for food (HUGE step for him)

*He went into the pool for the first time (and hated it, it was a little chilly)

*He has 10 teeth, four of which are molars

*He now has 4 fish, this is Mario:

Ok, now for the trach stuff.  Since Colin has been doing so great with his Passy Muir Valve and was doing pretty well tolerating his cap, I thought it might be a good time to try to downsize his trach.  Downsizing means to put a trach in that is smaller in diameter.  His trach is 3.5mm in diameter, we wanted to try a 3.0mm trach.  I discussed it with his ENT doctor and the ENT nurse practitioner and I got the go-ahead to do it at home.  So, I downsized him to the 3.0 and it didn't go as great as I thought it would.  It didn't seem to help his work of breathing with the cap, and even made his sats dip a little lower than they usually are.  Since we weren't thrilled with how he was responding to the downsize, we put the 3.5 back in and made an appointment to bring him in to have ENT look at him. That appointment was today.  They ended up scoping him to see what was going on in his airway.  They took a tiny camera and stuck it up his nose to examine his upper airway then went down his trach for the lower airway.  The doctor mentioned that his adenoids looked swollen and I was all like, "wait, I thought he got those out."  Turns out it might just be swelling from his surgery.  Then he mentioned his tracheamalacia, which his regular ENT doctor had told us looked better, but maybe not good enough.  We ended up putting in a longer trach since Colin was still in a Neo size, which is for babies, he's a big boy now.  Before the doctor walked out the door, I'm pretty sure his exact words were, "it looks like he's not getting the trach out any time soon."  I'm sure there are times I can be over-sensitive when it comes to Colin and his trach, but I made it very clear to the doctor that I was in no rush to get the trach out.  I am not trying to push Colin beyond what he is ready for, that was not my intention.  There is a process, and it seemed that he was ready for that next step, which he wasn't, and that's FINE!  Colin needs the trach in order to survive.  So many ask when he's getting it out, and my answer is, "When he is ready."  The trach does not hurt him, he is not sick. Yes, he will be safer once it's out, but his body just needs more time to grow and get stronger.  His lungs are obviously growing and getting stronger because he is now pretty much weaned from supplemental oxygen day and NIGHT!  Woot woot!!  Here's Colin in a super cute tank top:

The only thing to report with the g-tube is that Colin is getting the Mini-one button instead of the MIC-KEY button.  The Mini button is lower profile and sit closer to the stomach which I'm hoping helps with his granulation tissue!!  Ugh

So that's that!  He is wonderful and happy and beautiful and funny and God has blessed us so much. Colin says Adios with a double kiss:

G Tubes, Oral Aversions, and Feeding Pumps, Oh My!

I am a week late! Feeding Tube Awareness Week ended last Saturday, but I say, better late than never!  I've explained all about Colin's trach and why it's needed, but I haven't really talked about his G-Tube at all!

Here is Colin showcasing his G-Tube

First off, I'll explain why this was needed.  If you've seen pictures of Colin when he was still inpatient, you would see a tube in his nose called an NG tube, shown here:

This would attach to his feed, so if he didn't want to eat orally, then his feed would go in through this tube directly into his stomach.  Colin obviously could not take any food orally while he was intubated, so all of his food would go through that tube.  Once Colin got his trach, was started feeding him orally.  He actually seemed really excited the very first time we attempted to feed him.  It turned out that he was aspirating his food, meaning that he would breath in some of his food and it was going into his lungs making him sick.  The doctors had to do a swallow study to see if thickening his food would work, which it did.  So we had therapists that would come to his room at the hospital in Pittsburgh who would work with Colin and me during his feeds.  Sometimes he would do great with a bottle and sometimes he wouldn't.  

As we continued to work on feeds when we transferred to Nationwide Children's, he became less and less interested in taking a bottle.  He did, however, do a good job nursing, but I was not producing enough for him to nurse exclusively, so down the tube supplemental milk would go.  As the time for him to come home seemed to be getting closer and closer, Colin started deciding not to eat from a bottle as much and would refuse to nurse at times as well.  I talked to people I really trusted at the hospital and they all agreed that Colin would need a G-Tube (or Gastrostomy Tube).  So, we scheduled the surgery, much to my disappointment, as I was really hoping that Colin would eat well.  However, Colin needed the feeding tube.  The Occupational Therapist that we saw in the NICU and now see at clinic on occasion basically told us that Colin would starve to death before drinking a bottle.  He just doesn't understand that eating nourishes his body, fills his belly, and is necessary for survival.  

Ok, so here is what a G-Tube looks like:

This G-Tube in particular is called a MIC-KEY button, which is much smaller than what he had originally, the Peg tube.  There is a smaller tube called a Mini button, which I would love for Colin to get.  We stick this into the hole that is in Colin's belly and inflate a balloon so that it stays in, here's what it looks like inflated:

The balloon is filled with water, we change this every 3 months.  Of course, we have to wait until his belly is empty, or else all of his food would come out of the hole when we took the g-tube out!  In order to feed Colin through the g-tube we use an extension, seen in the picture below:

We insert the extension into the g-tube and connect the g-tube to his feed, which uses a pump to push his food in.  Lots of kids can handle bolus feeds where, using a large syringe, people can use gravity for the feed to go in.  Since Colin has emesis (or vomiting) issues, we put his feed over 45 minutes on the pump.  

The g-tube has come out accidentally (3 times to be exact), it's designed to come out if forced so that there would be no damage to his stomach.  We're only humans, and we make mistakes.  It is very scary though.  If the g-tube comes out and we are unaware, the hole in his stomach could close on it's own in as little as 30 minutes!  Yikes.  It is very low maintenance, however.  We clean it, but it is not a sterile opening like the trach.

So, that about covers it!  We hope and pray that Colin will continue to improve on his oral feedings and will be able to have the tube removed.  We take it day by day, but we've made huge strides since coming home.  Here he is after a great feed: