Thursday, June 7, 2018

"I think I'll go to Boston..."

I've put off writing this post because to be honest, I am mentally, emotionally, and physically drained. It takes a lot of energy to explain where we've been and where we are headed sometimes, especially after we've been here this long and you almost don't know where to start, and to be honest, are so tired of talking about his "problems."

But truth of the matter is, Ridge has many problems, and we are finally on track to getting him fixed, hopefully.

Let me start at the beginning...

Over the past several months, Ridge had been fed via G-tube at 28 k/cal (normal is 20) per ml, getting 35 ml/hour for continuous feeds 24/7. He has struggled to gain weight, even with the increased k/cals. We had been working with GI and dietitians to try to get weight on him. In the meantime, we also had a test done and found a new recurring fistula has appeared. Because of this, he needed more surgeries. More surgeries led to more anesthesia, more anesthesia led to more lung problems than he already had. During this time, using a hospital grade suction machine, I was pulling up white, frothy, bubbly stuff. We did not know if this was coming from his lungs or via reflux from his stomach. This became a back and forth battle of what it was and who could fix it.

So, that being said, March 29 he had his first attempt to close the fistula. They cauterized in the pouch and where the hole area was. We had to stay overnight as he required oxygen afterwards. We were sent home the next day. The symptoms continued with no true improvement. To us, he actually seemed worse. We went in for another test to see if the hole closed. Unfortunately, it was more open than before, which meant another surgery.

We had the second attempt done April 19. We had planned to stay this time, and we ended up staying two nights. Our surgeon pulled pulmonary in to get a game plan. This didn't get us very far at the time (we didn't get our normal pulmonary doc) so our surgeon made the decision to put a TPT tube (transpyloric tube) into his button down into his intestines. This would prevent the reflux from happening so much, and allow the hole to close without being irritated by reflux and stomach acids, as well as help heal his lungs. They were beginning to sound more and more coarse. Three weeks passed, another test was done. HOLE. IS. STILL. THERE!! The hole wasn't any bigger, but it also wasn't any smaller. Our frustrations began to settle in. The surgeons discussed heavily of whether we try the cauterization procedure a third time, or if we do a full thoracotomy. For those that don't know, the cauterization is less invasive and they perform this via a bronchoscopy. A thoracotomy is going in through his side, through the rib cage, collapsing a lung, and doing what they needed to this way. Ridge's lungs were in no condition for this surgery. Also, because he has tracheomalacia so bad, this procedure can just make it worse, making our respiratory issues even worse than where we currently stood. In the meantime, he has been getting fed via TPT for a month at this point, keeping reflux down and hopefully brining on some weight. Unfortunately, he was going the wrong direction and losing weight. This was becoming another problem to figure out.

Wednesday, May 16, we came down for appointments with Pulmonary and GI and at that point decided we needed to figure out:

  1. Why his lungs were having issues and get the documentation we needed for home oxygen. 
  2. Why he isn't gaining weight.
  3. What in the world is this white, frothy, bubbly stuff and where is it coming from!!!
This is what I told them I wanted figured out while we were here this time. We knew we were having surgery May 17, so GI and Pulmonary teamed with our surgeon and came up with a plan. The plan was, have the surgery Thursday morning, stay and monitor oxygen, put on TPN and Lipids to clear the GI tract and determine where the stuff was coming from, see if he could gain, and give his lungs some support, and by Monday, go home with oxygen and potentially TPN/Lipids. 

During surgery, the surgeon cauterized the hole and in the pouch, and also used glue to hopefully help hold it. However, the surgeon also saw this white substance I have been talking about and it came up from his lungs into his bronchial tubes and trachea during surgery. Ah ha! We had an answer before it even started! The junk is coming from the lungs. Unfortunately, that is a problem. Pneumonia it is! After surgery he did well, but as usual, required O2. We got settled in our room, talked to pulmonary and GI, and the ball was rolling to get the O2 and hopefully go home Saturday or Monday. Friday morning the PICC line was placed for the TPN and Lipids feeds. By Saturday, he had fever and was going downhill and fast. 

From Saturday to Monday his fever only came down with Ibuprofen or Tylenol and we were giving it around the clock every 3 hours. He was restless, breathing fast, and struggling. Monday, he tested positive for a virus. So now we have a virus and pneumonia to fight, all while trying to heal the hole. This is slowly becoming a perfect storm for not healing. Pneumonia was settled in deep in both lungs, and by Monday night his fever was not coming down with the medicines. Respirations were in the 80s and his O2 level jumped from needing 6 L to needing 10 in just a couple hours. Our sweet nurse called the MET team and after coming in twice to observe, decided once we hit 10 L and over 102 fever we needed to transfer to the IMU (Intermediate Care Unit) for closer observation. [Disclaimer: Ridge loves his girlfriends in 3D - Surgery Unit.] Over the next two days, his O2 levels increased to 12 L. At this point, his stomach is bulging from so much air. We removed the TPT tube placed after the last surgery and hooked him to a vent bag to help relieve some pain and discomfort. Over the next several days, O2 was weened very slowly until we got down to 6 L. We were in IMU from May 21 - May 29. Finally, we were transferring out of IMU to ITU (Infant Toddler Unit...but we love our IMU team) and getting a bigger room and hopefully would be recovering soon. He was getting over the pneumonia and virus and starting to feel more lively and like my Ridge. 

Days passed and it didn't seem like Ridge was tolerating weening from the flow very well. He wasn't needing the FiO2 (oxygen) so much as he was needing the flow (liters per minute). The thoughts are, his tracheomalacia is causing him to need the flow to keep his trachea from collapsing. Hmm..what to do about that? I can't sit here on high flow until he gets bigger and grows out of his issue, because 1. remember, we aren't growing, and 2. some kids don't outgrow it so that would be a lot of time to risk the fact he may never outgrow this. 

In the meantime, we are on TPN and Lipids and barely growing. I mean, 0.02 kg some days. Which is not much. Like an ounce. With the amount of sugar and fats, this isn't making sense. We are in the talks of having genetic testing to see if there are other reasons why this is, as well as continuously playing with his numbers to get us better results. 

Last week, I decided I would finally raise the question: Do we need to get a second opinion and go to Boston. When one physician says, "If this were my son, I absolutely would" you jump on that option. We started working with insurance, requests, calling Boston, etc. Our case manager started the process and got everyone rolling. Why do we want to go to Boston you might ask? They have the best pediatric clinic for kids like Ridge with EA/TEF. If you're curious of Ridge's conditions or what we are going for, go check out their website (http://www.childrenshospital.org/centers-and-services/programs/a-_-e/esophageal-and-airway-treatment-program). It will give you some insight on what we are needing and what we are hopeful for! Dr. Jennings is a worldwide known surgeon that has developed life-changing procedures for kids like my Ridge. Did you read that right? LIFE-CHANGING! WE NEED TO GET TO BOSTON! The plan is for Dr. Jennings to check for any possible holes and to see if the surgery from 3 weeks ago worked. He will then perform a posterior tracheopexy at the same time, hopefully. Long story short, this will tack his trachea open by attaching it to his spine. This surgery could potentially lead him to eating soon, breathing better, and living a relatively normal (for him) life, and hopefully tubeless. 

SO, our case manager reached out to Boston for us, and she said Dr. Jennings is going to take on Ridge's case and he can help us. Did you hear that? Those words have never sounded so sweet. Someone can fix my boy. The day I got the call from our case worker and she told me that, the tears flowed. I couldn't quit thinking about his life afterwards, seeing him run and play, seeing him eat, seeing him be a typical little boy with his big brother and sisters. I couldn't stop crying. I called and told mom, and we cried all over again. It has been an emotional week. 

While we wait to go, we are still trying to work on Ridge's weight and respiratory state. He isn't gaining significantly on the TPN and Lipids and we aren't sure why. We are continuing to go up on numbers, and hopefully we will see more than just 0.02 kg in weight gain. It can be frustrating at times, but we are hopeful. Also, his gallbladder and liver numbers were out of whack in his labs, so an ultrasound was done, but praise the Lord it came back what they expected: its sluggish because he is only getting TPN/Lipids and there is nothing else wrong! Answered prayers there. We are on room level oxygen (21%) but he is staying between 3 and 4 L of flow to help with his trachea and the floppiness. Because of his gallbladder and liver and their condition, we are currently waiting to go to IR to get a new TPT line placed into his button down into his intestines. They are going to try to just push small amounts into his intestines a couple times a day to get his liver and gallbladder functioning correctly again. So while we wait for Boston, we will work on these improvements. 

Phew. That was a lot. And I am sure I have forgotten some things. After 21 days locked in a room, he was set free to roam the halls. He has taken on his role as hall greeter very well. He gets called a pretty or beautiful girl very frequently, and we take it in stride and laugh, because 1. he is carrying a dinosaur blanket, wearing blue, and has a blue Paci with a monster Paci clip...and 2. we know he's beautiful. 

As I wrap up this post, I just got the news that our insurance has approved the transfer and care in Boston! I can't quit shaking. I am so excited, we finally can get the help he needs! Now we just wait for a bed in Boston and wait for a flight!

Be praying for us as we make this transfer. As we've already been away from the other three for so long and their worlds have been turned upside down, we hate to leave them again. However, we are hopeful for the first time in a while that once we get back we will have a relatively normal life together as a complete family back together again, and that Ridge will be the boy we've prayed for him to be one day, and be completely healed. Also be praying for us that our insurance will provide the coverage we need as this is going to be a pricy transfer and visit and the bills will most likely add up. However, no price tag is going to be too big for my son to get a better life. We thank you all for continued love, prayers and support. We couldn't do it without our family and our village. We have people praying all over the country, and for that we are thankful. 

On that note, I think I'll go to Boston...

Friday, March 9, 2018

Thy Will Be Done

Life is hard. 

I don't have it all together.


I don't have all the answers.

I don't understand why things are or become the way they are.

I don't understand why things don't go the way I want them to.

I don't like when those I love are hurting.

I don't like when problems keep arising for my sweet Ridge.

I don't like when my precious Rylann can't seem to stay well.

I don't like when Rook and Reese are having bad days and I don't know how best to parent to them or their needs and it turns into a mess for everyone and we all feel a little frustration, guilt, love and stress.

But, that is life.

And life is hard.

2017 was a crazy year for the Austin household. Between preparing for baby number 4, to having baby number 4, to learning about baby number 4's health issues, to spending a lot of time with baby number 4 in the hospital, it just wasn't what we expected, prepared for, prayed for, and hoped for. But it was what we lived through, loved through, survived through, and laughed through.

2018 is here and we have looked forward to the positive changes. But sometimes those come with highs and lows. While 2017 was crazy, we planned on 2018 being smoother, less hospitals and doctors, more family time, better health, you get the point. And while 2018 isn't going terrible, it still isn't starting as smoothly as I hoped. I laugh at the times I have made plans this year and those plans have had to change. I don't know when I will learn. We have spent many days at Millard Henry Clinic between Rylann and Ridge with plenty of ear infections. We have spent several days with Ridge at Arkansas Children's Hospital for mishaps (you know, tubes coming out) and check-ups (which is more than a handful). But again, we press through. We've been praying for other things to come our way to make our family dynamic a little easier as well, but those things have yet to come to fruition. It has been a long journey. There have been tears, frustration, heartache, bitterness, love, perseverance, prayers, desperation, and strength. Darran and I both have so many questions about our future and what will it look like for us. In the midst of trying to "figure that out" and raising four kids, it has been exhausting.

When Jesus was preparing for his death, something that is quite a bit more troublesome to prepare for and pray for than my "better 2018" problems, he struggled. While in Gethsemane he was grieving, what the Bible says was "to the point of death." (Matt 26:38.) Jesus knew he was about to take on something, a plan, the perfect design by God to bring unity and connection and a pathway between Him and His people. This was the one and only way to make this happen. Jesus knew that. He knew that he came from Heaven to fulfill the Father's will, not his own (John 6:38). In his prayer, he prays while falling face down. Face down in what was probably dry soil turned wet from tears surrounding the olive trees in the garden, pleading, "My Father, if it is possible, let this cup pass from Me; yet not as I will, but as You will" (v. 29.) Father, please take this suffering from me. But, let it not be what I want, but what you want for me. This prayer is one that would be a gut wrencher. This prayer would require you to swallow all of your pride, get on your knees and say, Lord, help me in my suffering, but if it is what you want to happen, then it will happen.

Many times, I pray and pray and pray for things to happen. For Ridge to get better. For Darran to get to be with us every night. For our lives to turn semi-normal. I get frustrated and bitter and tired and negative when things do not go as I wish, as I pray, as I want. It is so easy to take that route. What isn't so easy is falling face down and saying, "Okay Lord, please take some of these burdens from me.  Please heal my sweet precious son to eat, to develop, to be healthy in every way. Please bring us an opportunity for Darran to be home with us and for us to have a normal functioning life. Please make things just a little easier. BUT...if that isn't what you have planned for us, if that isn't what you want for us right now, then THY WILL BE DONE." God didn't say life would be easy. There will be suffering. There will be pains. There will be struggles. It is how we react to those struggles that matters. How will I pursue God in my pain? How will I reflect Christ in this period of suffering? How can I better sing God's praises through the storm I am in? As Jesus understood, I too must better understand we are sent here with a purpose. I was not sent here for my own pleasure and will. I was sent here to do the will that God has planned. As a believer in Christ, through my struggles and frustrations, I must rejoice that I am here and can use this for His purpose, for His good, for His kingdom.

Thy Will by Hilary Scott has become one song that has played over and over in my head many times.
Watch: https://www.youtube.com/watch?v=Dp4WC_YZAuw
Here are the lyrics:


I’m so confused / I know I heard you loud and clear / So, I followed through / Somehow I ended up here I don’t wanna think / I may never understand / That my broken heart / Is a part of your planWhen I try to pray / All I’ve got is hurt / And these four words


Thy will be done 
Thy will be done 
Thy will be done 
I know you’re good / But this don’t feel good right now / And I know you think / Of things I could never think about
It’s hard to count it all joy / Distracted by the noise / Just trying to make sense / Of all your promises
Sometimes I gotta stop /Remember that you’re God / And I am not / So
Thy will be done
Thy will be done 
Thy will be done 
Like a child on my knees all that comes to me is
Thy will be done
Thy will be done 
Thy will
I know you see me / I know you hear me, Lord / Your plans are for me / Goodness you have in store
I know you hear me / I know you see me, Lord / Your plans are for me / Good news you have in store
So, thy will be done
Thy will be done 
Thy will be done 
Like a child on my knees all that comes to me is
Thy will be done
Thy will be done 
Thy will be done
I know you see me
I know you hear me, Lord

With all the chaos and noise and trials that come our way, through the struggles and pain, through the triumphs and joy, Lord, Thy Will Be Done. 

Wednesday, January 10, 2018

Deep Waters

"Your grace abounds in deepest waters / Your sovereign hand /  Will be my guide / Where feet may fail and fear surrounds me / You've never failed and You won't start now
So I will call upon Your name / And keep my eyes above the waves / When oceans rise, my soul will rest in Your embrace / For I am Yours and You are mine
Spirit lead me where my trust is without borders / Let me walk upon the waters / Wherever You would call me / Take me deeper than my feet could ever wander / And my faith will be made stronger / In the presence of my Savior"
This song is not easy. Read the lyrics again. Spirit lead me where my trust is without borders. As a human being, it is hard to imagine, hard to concept, anything without borders. We think about the number infinity, I still feel there will come an end. I think about creation. I feel like past the universe and galaxies out there is a massive square box we all fit in. When I think about eternity, it is still hard to grasp that is forever, because humanly forever, there is an end. So when the words state "Spirit lead me where my trust is without borders," that is a big plea with Jesus. To have full trust in Jesus that you will walk on the waters where you otherwise would sink. To ask him to take you deeper, that is bold. If you ask these questions, you better be ready to tread those waters. 
Day 2 - May 16, 2017: Surgery day. My precious, tiny, 6 pound baby. "We are going to cut here." "Are you okay with a spinal block?" "Can he have a blood if we need to give him some?" "He may be in a lot of pain when he wakes up, which may take a day or two." These were things I was asked and told way too early in the morning on just your second day of life. Some things I knew, some questions I didn't know how to answer. "Your grace abounds in deepest waters." I have never been in those deep waters in a way I was in those first few days. "Where feet may fail and fear surrounds me." I have never been in so much fear as I was sitting at Arkansas Children's Hospital. We wheeled you down from the NICU. We met with the surgeons and anesthesiologists. We answered questions and discussed issues. We answered more questions and discussed more issues. My head was spinning. I sat there beside your bed with Darran, mom and Micah. I just had to hold back tears. I was scared. This was waters unknown for me as a mom. I didn't think I would ever have to answer questions I had to answer in reference to my baby. "So I will call upon Your name." I did. All I could do was pray to myself over and over. Even when people were talking to me, I could remember I was praying inside. I don't know that I remember much of the conversations that day. It is a blur. After they took you back, we made our way up to the crowded waiting area. We waited. And waited. And waited some more. Surgery was almost four hours. "When oceans rise, my soul will rest in Your embrace / For I am Yours and You are mine." The ocean was rising. I was anxious. I was standing up. I was sitting down. Up. Down. The phone was for me, you were doing fine. Down, up, down, phone, up. It was some of the longest hours of my life. Finally! You were out of surgery, doing well, and they would have you in recovery and back upstairs in the NICU shortly. I could breathe. Jesus kept me in his embrace. I would have never made it through that day without a whole lot of Jesus, Darran, and my family (Mom, Dad, Micah, Callie, Amy Jo and Darrak). When we got back to your pod, I didn't want to leave you. I watched you, I watched as your ventilator machine monitored and helped you breathe, I watched your blood pressure, your heart rate, your temperature. I wanted to make sure, even though you were peacefully sleeping, that Mommy was by your side. I wasn't going to leave you. We made it through together. Your tiny body, now with a scar and a small hole just below it, still beautiful as ever. It was a long day. But we made it! "You've never failed and You won't start now."
This coming Monday you will be 8 months old. Since your first surgery on day 2, you've had 5 other procedures. The fear I felt on day 2 in the surgery waiting room is filled with familiarity now. Not because I don't fear for my child, but because through this deep ocean we've been swimming in, as the oceans rise and fall on the journey, there has been an ever present constant: Your sovereign hand has guided us through. Though it may not be easy, or pretty, or clear, one thing remains: I am Yours, You are mine. 
From Day 1 to today, Day 240, you are what I needed. You are what our family needed. Though the days be tough, and the challenges still come, I have and will always love you, fight for you, and support you. It is amazing the things God knows we need before we ever know they exist. God knew we would have our sweet Ridge Grisham well before we did. He knew I needed him. Ridge has a purpose. And through his little life, Jesus shines, and for that, I am blessed.