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:

The Honeymoon Phase

When I was in the hospital with Colin, the doctors kept reassuring me that I was going to have a healthy baby.  Since I had reached that critical 24 weeks gestation when my water broke, they felt that his lungs had developed enough.  So, I wasn't too worried.  Now I'm wondering if they just told me that to keep me calm. When he was born, we heard him cry in the operating room and it was the most beautiful sound.  A doctor called while we were in recovery and told us that his lung had collapsed on the way to the NICU and they put a chest tube in to re-inflate it. This was really scary.  I finally got to see him around 1am on the 26th (nope, didn't even get to see my baby the day he was born).  There were so many wires and tubes, but I had a calming feeling that he would be alright.  

The very next evening, Colin had been extubated and was on a high-flow nasal cannula, which is very little support and over the next week, he slowing started having stuff removed.  We were thrilled that he seemed to be on his way to 100% health and started making plans to bring him home.  

Around the second week of January is when things started to change.  I remember I got a ride to the NICU that day from my friend Krista, whom I had met on the ante pardem unit and her son, Rowan, was also in the NICU.  I walked into Colin's little room that day and saw that he was back on high flow and I immediately started crying, this was a step back and I had a feeling that something was wrong.

Colin had atelectasis (a word I googled hundreds of times, which means collapsing of the lungs) and digressed rather quickly over the next couple of weeks. I was heartbroken and terrified, especially when Colin was put on the oscillator ventilator after his oxygen need was up to about 80% and his CO2 was around 100 (should be around 50). I thought that Colin was not going to make it, there is no higher level of support than the oscillator. This was about the time I went into silent mode. The only people I would speak to were Matt, my parents, and his parents, I couldn't bear having to explain to people what was going on with Colin, I didn't really want to believe it. 

He ended up on that machine for about 3 days and was then switched to the conventional vent, this made me feel a bit better, but I wanted him back to the nasal cannula and room air ASAP. That didn't happen, in fact, they were having a very difficult time weaning his vent settings and then he just got stuck. It was at this point that they decided to transfer him to Children's Hospital of Pittsburgh of UPMC. Again, I was terrified. They were planning on doing a bunch of tests and scans and I was afraid that they would find out that Colin had something that wasn't treatable. It was crazy to think that, I know!

So, Colin had a CT Scan and PFT's (Pulmonary Function Tests) to try to determine the damage to his lungs. I remember sitting in Colin's room waiting for the doctor to come in and talk with us about his results and just praying that everything would be Ok. The doctor came in and gave us news that I was thrilled to hear: "his lungs don't look terrible". Praise the Lord! It was the best news we'd heard in a while. The words they kept using at Magee Women's Hospital were, "Pulmonary Hypoplasia," and that is really bad, according to my enemy at the time, Google. The doctor told us there was no sign of hypoplasia, again, praise the Lord. And the PFT's showed that his lungs responded to bronchodialators and steroids, so they started him on those.

Over the next couple of weeks, they had Colin weaned off oxygen and were able to wean his vent settings. Then came time to try to extubate, and we all know how that went. 

I am amazed at the work that God has done in me over the past year.  Looking back on how I responded to Colin's situation, I'm embarrassed.  Instead of shutting people out, I should have reached out, I needed all the support I could get.  I needed people to come and pray with me and just be there with me.  I should have shared my story with as many people as possible so that they could have been praying more specifically.  I'll never know exactly the reason that all this happened, but I do know that my eyes have been open, my heart has been changed.  My perspective on life is so much different.  And I thank God for that.  He has also given me the most amazing little boy I could have ever asked for.  

We learned later on that this is a common occurrence, for premature babies to seem fine for a couple of weeks then just crash and burn.  They call it the "Honeymoon Phase".  I often think about those couple of weeks, where we thought everything would be OK and I get a little sad.  How different would our lives be if he hadn't gotten worse?  I know I shouldn't think like that, but it creeps in there.  Then I think about all we've learned and how many amazing people that we've met and how many lives Colin has touched, and that makes me so very happy.

An Update and a Promise

Wow, I really need to be better at this whole blogging thing! My apologies for taking so long to post. I figured I would do a quick update on Colin, but I am also working on a post that explains what happened between the 2nd week of January and the 2nd week of February last year, since I sort of went silent.  

Colin has been doing well, he is on room air all day, using the Passy Muir Valve (speaking valve) and minimal oxygen at night.  We have been having some issues with what is called Pseudomonas, which is an infection in the trachea and is very common among people with trachs. We do a round of antibiotics, it goes away for a short time and then it comes back. The docs have decided to do a 28 days on/28 days off of the antibiotics during the winter since we're having such an issue with it.  It just causes a lot of extra secretions and some alarms at night.  

Colin had his one-year check up on January 9th and the doctor was very pleased with his growth.  He is on the charts for weight, length, and, of course, head circumference.  He had to get 5 shots, which was not fun at all, poor babe. 

He still isn't crawling or pulling himself up, his PT, Abbi, says that he is just being lazy and that he CAN do it, he just chooses NOT to do it.  Stinker. The same with eating, he is making huge strides with his oral feeds, but there are days he just chooses not to eat by mouth.  He is actually starting to eat almost a third of a container of baby food, and also enjoys yogurt.  He has six teeth, two on the bottom and four on top.  He is starting to look so much more like a little boy and not a baby, which makes mama a little sad.

That same day we had BPD (Bronchopulmonary Dysplasia) Clinic, where they basically check Colin out, discuss nutrition and make changes to his diet, and we meet with a Feeding Specialist.  They decided to switch Colin from his Enfamil Enfacare formula to Pediasure, which our insurance will cover and our equipment company will deliver, saving us a lot of money, praise the Lord! (Side note: we also got approved for BCMH, which is a secondary insurance that will help us cover the costs of his medical bills and the co-pays for his medication, which are hundreds of dollars) The feeding specialist was happy with his progress and gave us some tips on how to re-introduce liquids, which I think will be a very difficult task.

He has said his first word, which was "mama."  Daddy wasn't very happy, but like I explained to him, I'm home with him all day, do you really think I sit here and say, "dada, dada"?  Nope! He has also learned how to manipulate me into rocking him to sleep at night, which I really don't mind.  His favorite toys are not toys at all, but his tubes and cords and, of course, my phone.  He also loves watching Octonauts! 

We feel so blessed to have Colin as our son and he has brought endless amounts of joy into our lives. He is so much fun and we look forward to what God has planned for us this coming year! 

I promise to be better at updating the blog, I know some of you love seeing pictures and getting updates on Colin.  Thanks again for all the love, support, and prayers, we have amazing friends and family.  Love to you all!!