Friday, August 22, 2014

The Call

Today I received the news I've been dreading for over a year and a half. It's time for Ty to have his first open heart surgery.

A few days ago we were surprised to learn that another of Ty's valves was causing problems, and today I found out that valve is the reason he needs the surgery now. We've always know his aortic valve was deformed and was going to need repaired and eventually replaced. That valve is very narrow but stable right now, but his mitral valve (which we've just discovered is also too narrow) is causing his left atrium to dilate. That is putting a little pressure on his lungs, which may be causing the symptoms we've been so worried about. I'm thankful I acted on my instincts and called the cardiologist with my concerns last week because he was able to see us this week, a full three weeks sooner than planned. Those three extra weeks are going to come in handy since they say Ty needs surgery within the next 6 weeks.

Right now the plan is to do the Ross procedure, in which they'll replace Ty's aortic valve with his pulmonary valve. At the same time they plan on trying to repair his mitral valve, which may buy us a few years until he will need another surgery. Eventually when Ty is full grown he will need at least one, maybe two, mechanical valves. For now though, his cardiologist says this surgery needs to be done before RSV and flu season begins because it would be very bad for him to get sick in his current condition and with the added pressure on his lungs.

I should be hearing from the hospital next week about setting up a consultation with the new surgeon at OU Children's. We have the very big task of deciding (quickly) whether to try this new surgeon or take Ty back to St. Louis.

I don't feel ready for this at all, but I know I never would. It's incredibly scary to think of Ty going through all of this, especially when he seems okay. I've had a few panic attacks today, but it brings me comfort to think of how many people are praying for him. He is already a miracle, so we have a lot of reason to hope that he will be watched over now. We would greatly appreciate any and all prayers in the coming weeks. Thank you for all of your support!

Thursday, August 21, 2014

Follow-Up

Ty turned 19 months old yesterday! Today he had a follow-up with the GI specialist to go over results from last week's tests. We were happy but not surprised to learn that everything looked normal. She agrees that his vomiting is probably an issue with the ng tube causing reflux. Ty has experienced a sudden, dramatic increase in appetite this week, and it payed off since he managed to grow a little in weight and height since last week (20.6 lbs and 31.1 inches).

Following that appointment we had a follow-up with the nephrologist. Ty's kidneys haven't changed since his last visit, but that's okay. So far the recovery has been very slow, so I don't expect change at every appointment. They are still functioning around 60%, but his doctor says his heart function is skewing his numbers. He estimates that his kidneys are actually functioning at 70, possibly even 80%. His Chronic Kidney Disease is currently at Stage 3, but it's hovering at Stage 2 (that's better). We have come such a long way! It's hard to believe that Ty's kidneys are doing so well after barely functioning in the beginning.

Ty's iron is low again so we'll be bumping up his dose, but we're dropping one of his other medications. His doctor explained that Ty is at a moderate risk for another acute kidney injury with heart surgery, so he expects Ty to need a dialysis catheter to be placed preemptively in case he needs dialysis during his recovery. He really stressed the importance of getting Ty to grow though because, from what I gathered, he would be at less of a risk for kidney damage if he was larger for surgery. With all of his doctors talking about the g-tube, there's a good chance he'll be getting one soon.

So anyway, it was good to hear that he doesn't have anything wrong from the GI's perspective, and it's always a relief when we hear his kidneys haven't worsened. Also, Ty did awesome for both appointments. More good news is that the nephrologist won't need to see him again for 6 months. Yay! In the meantime, we will keep doing lab work every 2 months. Not bad at all!

Tuesday, August 19, 2014

Out of It

Big day today! Last week Ty saw a GI specialist, and on Friday morning I took him in for a couple of tests. Honestly though, after speaking with the GI specialist and discussing possible causes for Ty's problems (vomiting, coughing during sleep, weight loss, and loss of appetite) Ben and I were more concerned that they were heart related. It was confusing because his symptoms can be related to GI problems, but they can also be signs of heart failure.

We were able to see the cardiologist briefly today, but the purpose of today's visit was for another sedated echo. The echos go so much better with medication, but they take a lot longer. Today there was trouble with Ty's IV because his veins are so tiny, but the PICC line nurses came in and took care of it. They also drew blood for his kidney labs while they were at it. Ty had received a little bit of medication through his nose before all of the poking began, which helped immensely. After the IV was placed he was given more medicine, and that quickly calmed him almost to the point of sleep.
Ty provided us with some great entertainment as his medication started wearing off. Dopey toddlers are so funny! Anyway, the cardiologist spoke with us for a few minutes. We have an appointment with him in three weeks, but for now he could tell us that Ty's heart appears to be stable still. We were relieved hear that Ty's heart was not causing his other issues, but we were disappointed to discover that his mitral valve has a little stenosis. Ben and I both were surprised to learn this because, although it had been a source of major concern in the early weeks of Ty's life, we had been under the impression since then that his mitral valve was fine. It may also need intervention at some point, but I will have the chance to find out more during our appointment in a few weeks.

Back to Ty's other issues...Thankfully the vomiting has toned down a lot in the last week. The cardiologist and the GI specialist think the vomiting may be a result of reflux induced by the feeding tube. They think it is time for Ty to replace the ng tube with a g-tube (which is surgically placed in the belly). A g-tube would have its own challenges, but it could also be easier in a lot of ways. We should find out more about that this Thursday at his next GI appointment. Until then, here are some pictures from the last week. Enjoy!

Thursday, August 14, 2014

Guessing Game

These last few weeks have been busy! We've been in and out of the pediatrician's office for a few random things (Pink eye, anyone?), but we've also been in touch over something more concerning. For almost two weeks, Ty went through another spell of frequent vomiting, and we really couldn't determine the cause. I say "another spell" because this happens occasionally and lasts about a week, and we don't ever know why. He never seems to be sick, other than the fact that he throws up at least once a day and some days after every single tube feed. It doesn't even seem to bother him though; he just gets it over with and continues playing. This kid is pretty amazing, even if he does like to worry his mama.

Anyway, these spells always worry us. Vomiting can be a sign of heart failure, for one, and it also results in weight loss, which Ty certainly doesn't need. His pediatrician decided it was time to see a GI specialist so we had an appointment yesterday. We discussed a few of the possible causes, but we won't really know until some test results come back. They did an x-ray of his abdomen yesterday, and tomorrow we're going in for a test that will see if everything is working properly when he eats. We were very disappointed to learn that Ty is down to 20 pounds, which is the same he weighed three months ago.

We've been talking to his nutritionist again because we are also at a very low point eating-wise. Lately it is the norm for Ty to eat less than 200 calories a day (some days it's literally just a few bites). Trust me; we've tried all kinds of different food and ways to serve it. I am often asked how long Ty will have the tube, and I sure wish I knew the answer. Eventually we will have to wean him off, but at this point we cannot risk him losing any more weight in that process.

Speaking of nutrition, I have also been asked why his weight is such a big concern. After all, there are plenty of small kids who are just fine. At first I didn't really know the best answer; I just knew it was important to his doctors. I've since become more informed, so this explanation is for anyone who has wondered. A lot of children with heart defects (not to mention Chronic Kidney Disease as well, in Ty's case) have nutritional problems, sometimes because of the energy it requires to eat, trouble absorbing the nutrients, and/or because of the extra calories their bodies burn because they're working harder to function. When Ty fails to grow at a healthy rate, it can be a sign of other problems or it can mean he is malnourished. Any malnourished child can suffer cognitive or developmental delays. When "heart kids" are malnourished it can affect how their bodies handle heart surgery and/or the recovery.

Ty needs at least two open heart surgeries. The first one is essentially to hold him over until he is full grown and can have a valve replacement. There is a possibility that Ty will need another heart surgery between that time, but if he is large enough for his first surgery, it's also possible that we can skip that one, which obviously would be fantastic. So that's that, for anyone who was wondering. Despite everything, he looks great, and he is happy and incredibly energetic, which I don't understand at all.

I hope I don't sound negative though. I never want my concerns to sound like complaints. I am incredibly grateful for Ty and for the joy he brings every day. It's a hassle sometimes, but I'm willing to do whatever it takes to help him be the healthiest, happiest boy he can be. That doesn't take away the worry though. At the end of the day I am just a normal mom who wishes things could be a little easier for my son - not for me, for him. I know Ben feels the same way. With that in mind though, I could certainly learn more from Ty who remains a stalwart example of resilience, endurance, and even forgiveness. Just yesterday I watched as he screamed at nurses taking his blood and then smiled and waved at them when they gave him a sticker afterward. I'm so thankful he's mine.

Sunday, July 27, 2014

18 Months

As of July 20th, Ty is 18 months old. This year is just breezing by! Last week I took him in for his 18-month checkup. He weighed 20 lbs 12 oz and was 31 inches tall. He has slid down into the 2nd percentile for weight, which is slightly concerning. Since he has started walking he has seemed even less interested in food, but he has also been burning more calories. He is only eating between 200-250 calories a day on his own right now, which is definitely worse than he was doing for a while, so we may be seeing his nutritionist again soon.

Also concerning his eating, his pediatrician mentioned the possibility of Ty getting a g-tube. A g-tube has to be surgically placed into the abdomen, which is why she also suggested it be placed during his heart surgery if his eating hasn't improved enough by then. We really hope it doesn't come to that, but it is something to be considering as we get closer to surgery. 

In my last post I shared that Ty had another ear infection and was going to have his ears checked again at this appointment. We were relieved to find out they looked just fine, so it seems it was only coincidence that he had ear infections during both of his therapy evaluations.

Lastly, during this appointment the doctor and I discussed the ever-nearing surgery and where it will be done. Ben and I are trying hard to make the right decision regarding where to take Ty since open heart surgery is definitely not something we trust just any surgeon to do. Besides having a good surgeon, it's important to us that the rest of the team, nurses, and hospital are all great. When I think of having to make this decision, there are definitely moments when I wish I didn't have such a big responsibility, but the alternative would be to not have Ty at all so I quickly get over it. Ben and I thought we had come to a decision, but after speaking with the pediatrician we feel uncertain again. We will continue to pray about this until we both feel confident with the same choice. 

I'll wrap up this post with a little bit about Ty's recent achievements. First of all, Little Man is walking like a pro now and is getting faster and faster. He scaled a flight of stairs last week, and he enjoyed his first wheelbarrow ride (Thanks, Uncle Micah!). Besides that, his speech is really starting to pick up. In the last few weeks he has learned the signs for drink, all done, more, diaper, and swing. He now says mama, da-da, ball, car, cat, dog, more, drink, balloon, baby, Elmo, Dora, and "nayna" for his favorite cousin, Elena. He also went on his first ride on a boat and a tube. He loved the boat and playing in the water, but he lost interest in the tube very quickly. Oh well, we'll see how he feels about it next year. Here are some smiles to make your day! 
 

Sunday, June 29, 2014

Evaluation

Ty Man is 17 months old now. Wow! Last Friday he had an evaluation with Sooner Start to see if he qualifies for therapy services. Ty's neurologist had concerns about his gross motor skills and speech, so I wasn't surprised that he qualified for therapy based on low scores in both of those categories. At this point Ty should be able to walk at least ten feet, but he just took his first steps less than two weeks ago. He is also not climbing much yet, but I don't think that's such a bad thing.

In regards to his speech delay, Ty is behind in both his expressive and receptive communication. I already knew this, but it wasn't until the evaluation that I became fully aware of the things he isn't doing. For someone who isn't saying much, he sure likes to make a lot of noise! Something tells me that once he catches up he'll be just as chatty as Big Sis. In the meantime I was highly encouraged to try teaching him more sign language.

There were several areas in which Ty is on par with other children his age. His social skills are right on track, for example. He scored highest on his fine motor skills and attention & memory. I could have already guessed that his highest score would be his fine motor skills since he has always been very "hands on", but I was pleasantly surprised to hear that some of his skills are on a three-year-old level. Awesome!

As part of the evaluation, Ty underwent another hearing test. He passed, but they discovered water in his ears again so they suggested I take him to his pediatrician. I was able to get an appointment that afternoon, and sure enough he has an ear infection. He had fluid in his ears when they were last tested in February, so his doctor is keeping a close watch on them now. He'll have another hearing test next month, and if he has fluid again he may be seeing an ENT. For now we will give him antibiotics, and we will start therapy after the 4th of July.

At the end of the day, I am still so proud of how Ty did. First of all, the evaluation took quite a while and was in a small room, but Ty was happy and playful for the therapists. I'm also proud of him for the areas in which he excelled. He has overcome so much, and I am still amazed at his current mental and physical condition. I'm grateful for some good advice I received from the therapists, and I'm anxious to get started with therapy. In my opinion, even if his delays aren't severe, therapy certainly won't hurt. I have no doubt he'll be caught up in no time.

By the way, I am still trying to decide when he started looking like a little boy instead of a baby. Can anyone explain to me how that happened so fast?

Thursday, May 22, 2014

Just Keep Swimming

I hope you are sitting down for this one, because we knocked out two big appointments this week, and I have a lot to share.

First Ty visited his neurologist, and a lot has changed since our last visit 6 months ago! Ty weighed in at 20 pounds and is 30 inches tall. The neurologist was happy to see how he has progressed, but she did have a couple of concerns. Ty is 16 months old and not walking yet, and although many healthy children aren't walking by now either, she just wants to be on the safe side and get him into physical therapy. 

The other concern she had was Ty's speech, which didn't surprise me. She doesn't want us to be overly concerned right now, but if Ty's language development doesn't progress enough in the next few months she's going to test his hearing. He has already passed a few hearing tests in the past, but those were only to test if he can hear. She wants to make sure that he can hear clearly

I really like our neurologist, and she seems to care a lot about Ty. She has explained to me that it's very difficult to know what exactly we may or may not face during Ty's development because of the brain injury he suffered. It's so unpredictable. There is always the possibility of running into learning problems, delays, or even behavioral problems along the way, but we may also never have any serious issues. That's why I am not overly worried about anything right now. I think she just wants us to be aware of the possibilities and to be taking preventative measures. 

Following that visit I took Ty to the lab to have blood drawn for tests. The techs remarked on how much Ty had grown, and they practically squealed when they saw the size of the vein on the inside of his arm. They usually have such a difficult time working with Ty's little veins, but apparently his growth spurt paid off. He was still unappy about being poked, and we had six (6!) vials to fill this time, but it was over with so much faster than usual. Hooray for good veins!

Today Ty saw his nephrologist to discuss his lab results. Given Ty's current height and weight, his kidney function has increased from 50% at our last visit to around 65% today, which is fantastic! As the nephrologist stated, "That will take you a long way." That was the best news of the day, but his results showed other improvements.

The nephrologist also noted that Ty's speech seems delayed, and he asked if we had tested his hearing recently. He agrees with the neurologist that we need to keep an eye on his speech development because one of the medications he had taken regularly (until just recently) can cause hearing damage after extended use. I am not going to worry too much right now, because there could be nothing wrong. All we can do is watch, wait, and work harder with him in the meantime. 

Last but not least, I will close with a tidbit about Ty's first vacation. After Ty's cardiologist told us he wouldn't be needing surgery very soon, Ben and I immediately began planning a vacation. We were so excited to take Leah and Ty to San Antonio last week to enjoy the zoo, Riverwalk, Schlitterbahn, and Sea World. Ty was entertained through it all, but it was obvious to me that he had the most fun at Sea World. He was completely mesmerized by the large aquariums and shows, and he was very excited to see the Sesame Street cast perform at the Sea World Sesame Street Bay of Play. He even got to sit on Elmo's knee, which he thoroughly enjoyed since Elmo is his favorite. I'm so thankful we were able to take that trip together. Ty won't remember it, but I'll be happy to tell him all about it when he's older. Here are some of my favorite shots of Ty during our trip. Enjoy!