Thoughts from Ryan Rush

Dec 22, 2006 Update on Lily

// December 22nd, 2006 // No Comments » // Lily Rush

One more thought from Wednesday’s appointment… Lana did such a great job summarizing the good news from our GI appointment Wednesday, but there was one other thing that I wanted to share. Dr. Sanders, along with giving some rhyme and reason to the medications, also stated her belief that the reflux and heart issues are related. She doesn’t believe that the heart condition is causing the reflux, but she believes that the heart condition is causing the choking/ apnea reaction to be exaccerbated during those critical moments. The cardiologist in Houston was the only other doctor who thought that this might be the case. While this information doesn’t make the problem any better, the link does lead to the hope that, when we fix the heart problem, the reflux problem will also improve. Dr. Sanders stated that she wouldn’t be surprised if we saw a “dramatic improvement” in the reflux following open heart surgery in January. What a great day that would be!

One other item while I’m writing… Linda Fehlis, our Preschool Minister at Bannockburn, has a daughter-in-law who is on staff at TX Children’s Hospital in Houston. She was kind enough to let us know a couple of days ago that Lily’s heart surgeon was to be featured on the Discovery Channel performing an operation on a five-day-old heart patient. The program, “Surgery Saved My Life,”aired yesterday evening, and will air again on January 7 at 4PM Central Time. Lana and I watched it last night, and it was amazing to see the intricacy and expertise of that medical team. The baby featured in the show had a different condition than Lily’s but essentially underwent the same by-pass procedure. It was not easy to watch, and Lana and I both cried thinking about Lily facing the same process, but I’m glad it was on. Dr. Fraser is known around the world for what he does.

This week, I pulled out a stack of printed emails that were given to me in the midst of the last few weeks. Bob and Gayle Remlinger, some of the many faithful friends from our wonderful church, passed along some replies to their calls for prayer. These emails came from across the country and around the world. We’ve heard so many similar accounts, but it’s just an amazing picture to see the thousands of prayers for Lily surrounding the Throne of our Heavenly Father. That makes it easier to understand why Lana’s mom was right there – and wide awake – when the breathing stopped at 1AM at five days old, and I was right there – wide awake – when the breathing stopped at midnight at three months old. The God that watched over her then is watching over her now, and that knowledge is a great comfort to all of us. Thanks for the continued prayers, and Merry Christmas!

Dec 21, 2006 Update on Lily

// December 21st, 2006 // No Comments » // Lily Rush

Lily had her first appointment yesterday with a pediatric gastroenterologist and while we’re almost afraid to get excited at this point, we do feel a sense of relief at the news we were given by the doctor. Lily definitely does have reflux and it is more than likely the root cause of why she stops breathing occasionally.

The most interesting and helpful thing we learned was that we have been taking the wrong medications, as well as administering them all wrong! (This is why we kept insisting on seeing a GI specialist the last time we were in the hospital – we thought it was time to bring in the “big guns”!)

Lily has been taking Prevacid since the initial reflux diagnosis and we were told yesterday that Prevacid is not absorbed well in babies under a year of age. We had also been giving her Prilosec in the morning and at night before going to bed. We were informed that Prilosec must be given on a completely empty stomach – usually around 4 – 6 AM, and at least 20 minutes before her first bottle of the day. Otherwise, the medication is just absorbed by the acids in the stomach. So basically, we have been giving her medicine that is totally ineffective – giving her no medicine at all would have worked just as well as what we’ve been doing! Very frustrating!!!

We now have a strict plan to follow, using just two medications – Prilosec and Zantac. We’ll also be going back to the GI doctor for a follow up visit in 3 weeks. We feel like we’re finally being a little more proactive, rather than always chasing the reflux. We’ll keep you up to date on how the plan is working.
Something that we may not share enough is that despite all her health problems, Lily is a very happy baby. She smiles all the time and really tries to “talk” to all of us. She changes her voice and expressions and will totally carry on a conversation with us in her own “babyspeak”. She brings so much joy to our family.

I (Lana) cannot even begin to tell you how much it means to hear from all of you and know that you’re praying for us. We are trusting God and His plans for Lily and just taking things one day at a time. We so appreciate all of you!

Have a very Merry Christmas!

Dec 11, 2006 Update on Lily

// December 11th, 2006 // No Comments » // Lily Rush

Lily was released from the hospital around noon today. The pulmonologist reviewed the test results and mainly confirmed that there are significant breathing issues, and that they seem to be triggered by reflux. What they cannot do is prevent them from happening again. Right now, that’s a pretty frustrating diagnosis.
We are adjusting our meds some, so hopefully that helps, and they told us to brush up on our infant CPR. She will be on a heart and breathing monitor at home any time she’s sleeping or we’re not standing over her watching.

We’re focused on Romans 8:15 right now: “For you did not receive a spirit that makes you a slave again to fear, but you received the Spirit of sonship. And by him we cry, ‘Abba, Father.” We continue to cling to Him. We’re so grateful for the prayers of many, and for God’s protection.

Dec 11, 2006 Update on Lily

// December 11th, 2006 // No Comments » // Lily Rush

Lily was kept at the hospital another night as they wait for a pulmonologist to read the results of the extensive breathing test (has a big important name that I can’t remember and don’t feel like spelling). At that point, they will continue a methodical attempt to find out what is causing the choking/ apnea. I’m getting the feeling that we’re not going to know, and they are going to tell us again that it is just a rare occurance with some babies with reflux.

That may BE the answer, but it doesn’t offer much peace of mind, nor any opportunity to fix the problem.

Dec 10, 2006 Update on Lily

// December 10th, 2006 // No Comments » // Lily Rush

Things have gone relatively well leading up to January’s surgery, until Friday evening, December 8. We arrived home late from the Singing Christmas Tree performance at church. Lily had been enjoying an evening with her “Aunt Kathy” and “Cousin Kristin.” I (Ryan) sat down to feed her while I watched the Spurs game from earlier in the evening. She ate her whole bottle, and slept on my chest for about a half an hour. After that, I set her down on the ottoman in front of me and continued watching the game. When I looked down at her a moment later, it was like an “instant replay” from two months ago. She was laying there in her vomit, body bent backward at almost a right angle, not breathing. I tried the techniques we had learned to dislodge something from the throat of an infant, but to no avail. By now, Lana had called 911 and was trying to pull something out with a bulb syringe. Lily turned blue from head to toe, and I started rescue breathing on the floor until the paramedics arrived. She went from blue to an ashen grey, and then finally began responding to my breaths.

It was a nightmare, but we have never been so grateful to see a child breathe. Lana and I both confirmed aferward that we feared losing her in those moments.

We went by ambulance to Brackenridge, where they immediately began monitoring her vitals and undergoing blood tests. Since they admitted us into Children’s Hospital, they have been running several tests to find a solution to the problem.
One thing discovered in the chest x-ray was that, during her choking episode, some of her spit-up made its way into her lungs. She’s on antibiotics to prevent infection.

Doctors are guessing that it was another episode related to severe reflux, but no one is taking that for granted. We are dead-set on finding out how to prevent another event in the future, and are grateful for your prayers accordingly.

Dr. Shapiro, Dr. Wong’s partner and the Pediatric Cardiologist on call, has assured us that this is unrelated to her heart condition, and likewise will not pose a threat to that condition.