let's get a second opinion, Lindsay's bday, and Halloween

The weekend started out with a visit to a new GI doctor at TCH. What an experience it was! I had to go alone this time because Greg has a job to hold up :) I knew Luke had a stinky diaper when we got there, so I thought I would change it quickly before we were called back. Right when I got everything out to do the change, his name was called. I scooped everything up in my arms, including Luke and headed toward the door when I felt some nasty warmth on my arm. Oh dear. Luke had a mega blowout...the biggest one ever. It was soaked through the entire leg and back of his outfit. (which was super cute and weather appropriate) Thank goodness the nurse was sweet and helped clean him up (an entire pack of wipes - no lie), rinsed out his clothes and put them in a plastic bag to go! I knew I had a onesie in his diaper bag, but little did I know it was entirely too small. I was super sad that our new doc. was going to have to meet Luke looking like this..seriously who would dress there baby in a cheapy short sleeved onesie (it was cold outside) that barely snaps...it pulled down so far you could almost see his full chest. Oh well...there was no other option.

Dr. L was very prompt in seeing us. We had a nice long conversation about Luke's condition. Basically he made me feel a whole lot better about doing the scope. He said that TCH is one of the only hospitals that has neonatal scopes. They are super tiny. He seemed rather confident that he could do this procedure without blistering Luke and that he would not biopsy his insides. He said that out ENT doc. still wanted to be in the OR to take a look in Luke's airways since he would already be under anestethia. I left the appointment feeling a little more at peace with the decision to go ahead and scope Luke. THAT WAS FRIDAY... I don't feel that way anymore.

On Monday, our nurse Susie was babysitting Luke. She said that there was red blood in Luke's spit up. I texted our pedi. Dr. J telling him about the blood and asked if I should be concerned. He texted back saying no and that he would call soon. While waiting on Dr. J to call, the GI doc called. I ended up telling him about the spit up. Without any questions, he immediately said the blood was probably coming from an ulcer or blister. He seemed more aggressive in wanting to book the OR. He also said that he was not convinced Luke even had reflux! WHAT!? I SAW the reflux myself on the upper GI!!! LONG STORY short, when Dr. J called be back about the blood in the spit up, his first question was, "has Luke happened to have a cold?" ME: yes
Dr. J: have you been bulb suctioning a lot
ME: yes
Dr. J: oh I bet the blood is from doing that too much. It is probably coming from above his esophagus. Bright red blood would not be coming from his stomach.
ME: THANK YOU FOR ASKING THAT!
After talking with Dr. J about the GI doc ... we decided to get a second opinion from an older, more experienced GI at TCH. Dr. J reminded me that our one goal is for Luke to eat better and continue to gain weight. He doesn't think that doing the scope tomorrow or in a few months makes a difference. We all know it will have to be done...but I just want Luke to grow a little before putting him through all of that!

Friday night, Julie and Mandi GRACIOUSLY offered to babysit Luke and James Thomas so we could celebrate Lindsay's birthday! THANK YOU THANK YOU Mandi and Julie for taking time away from your own families to watch our little boys! We had a wonderful evening eating LOTS of food at Maggiano's! Happy Birthday Lindsay...I am so THANKFUL for you!
Saturday night we went to a Halloween party at the Chambers house! It was hosted by the Chambers and the Garretts. It was so fun to see all of the kiddos dressed in their costumes. Next year will be more fun for Luke...we can trick or treat!

One more update...Luke has gotten 2 new blisters on his toes, 2 new ones are forming on his fingers, and UNFORTUNATELY, there are 2 on his precious CHIN!. I have been so hopeful for no blisters on his face. I pray no more form near it!

I am so thankful for our precious baby! I still am praying for a miracle of complete healing...thanks for praying with us!

Luke gets his first C+

We went to our pedi., Dr. J, yesterday for a weight check and discussion on Luke's eating. It seemed like we were doing so much better with his eating after we got home from the hospital. He would eat about 3-4 oz. per feeding. The last few days have gone downhill. It seems like most of his feeding he is only taking about 2-2.5 oz. and is still fighting almost every one. :( Dr. J says that Luke should still be gaining about an ounce a day. He only gained 4 ounces this week...a C+ according to the doc. We have been trying to put it off as long as possible, but it is time to see the GI doctor at Texas Children's. Luke should be going uphill, not down. Dr. J thinks GI is going to want to scope him ASAP. Who knows what they will find. Supposedly a "normal" baby with severe reflux has some eating difficulties and an irritated esophagus...give this to an EB baby...yikes! Luke's tissue internally is just as sensitive as externally, therefore, constant acid irritation can cause big problems including a potential build up of scar tissue down him thus making meal time really painful and challenging. I asked Dr. J what he thinks would happen if this is what is found. He explained that sometimes a patient might need to be on a feeding tube (GI button) for a while to give his insides to heal. Of course I want the best for Luke and for him to be pain free...but a FEEDING TUBE seems so scary. He would have to go to therapy to keep remembering how to eat! We will just cross that bridge when/if we get there. I am waiting on Dr. J to call and let me know when our appointment with GI is...I am supposed to find out today. More on that later.

We also visited the pumpkin patch yesterday with our friends. Mandi and Avery went, Julie with Jacob, Hannah, and Elizabeth, Ann with Hannah, Ellie, and Benjamin, Autumn with Oliver and Wyatt, and Lindsay with James Thomas. Afterwards, Julie had us over to her house for a yummy lunch and pumpkin painting. She is so creative! Maybe next year Luke can paint one! We are definitely making this a tradition!

he HAS to prove himself

...that is what the doctor told us on Thursday. Luke's biopsy came back from the second reading and his exact type of EB is now labeled "inconclusive." (it seems like we have been waiting on this phone call for FOREVER!) The first reading said his condition was pointing toward the Simplex type of EB, however, after a second, more detailed reading, this does not seem to be the case. The good news is that it is not necessarily pointing toward the Junctional type either. (this type is SEVERE) At first I was really disappointed to not know what to research and what to expect from his disease, but my dad said it best, "I believe us not knowing his exact type is a blessing. God IS going to heal little Luke, performing a miracle, and knowing all of the details are not necessary." I am going to live on this for a while.

I have been saying what a fighter Luke is....well, now he just has to prove himself. We are just to monitor him closely and make sure he continues to gain weight. There is no cure or 'treatment' for our baby's disease...just wound care and a close eye! Day by day this disease is NOT going to win...it can't. We are just getting to know each other :)

I talked with our pedi. on Thursday too. After realizing that he is eating MORE but not BETTER (he still cries a lot during feedings) we are to follow up with our new GI doctor (THANKS TO THE GARRETTS) in 2 weeks. Dr. J said that there could be scar tissue building up in his esophagus from his reflux. This can act as a stricture obviously effecting his breathing and eating. He thinks that the GI doc is going to want to do the scope procedure sooner than later. Please pray this is not the case. We are NOT ready for this. We hope he starts taking bottles better at most feedings. As of now, he has about 2-3 out of 8 "peaceful" feedings a day.

On another note, we are currently visiting my family in Longview/Dallas. Luke has gotten to meet so many of his family members. He has gotten some good bonding time with his auntie Anna, Kippy, and Papaw. I think I went 2 days without changing a diaper! Thanks Anna and Mom. Unfortunately, he has had the worst couple of days. I think he must be out of sorts being away. He cried nearly the entire day Saturday and a lot on Sunday too. I know the traveling will get better with age...it better! I am so thankful to have such a prayerful family. Luke is being lifted up by so many...SOO many. For those who don't know, my dad started a worldwide ministry a few years ago. www.christtotheworld.com I am pretty sure Luke and James Thomas are being prayed for all across the WORLD! Amazing. Dad said that if Luke and James Thomas are healed with a miracle, his team of writers from the ministry are all set to write these boys' story....that God can still perform miracles just like He did so long ago. What a time that will be...that people will be brought to Christ through our sweet babies.

I have not captured many pics while being here. I will take some today and post them soon! Sorry for the long "wordy" post. :)

weight check and more

We are so thankful that our besties are home. Please please please continue to pray for them. This is a not an easy journey. They mean so much to us and it literally brings me to tears to see them go through this.

We went in for our weekly weight check and Luke has gained 8 OUNCES! He is now a whopping 10 lbs. 15 oz.! He is obviously eating MORE but still fights through a lot of feedings. I am still hopeful that this is the reflux causing the pain and that his reflux medication just isn't working that good...that the pain is not coming from any type of internal blistering or damage. As long as he is gaining, we can prolong putting off the scope procedure. We are trying so hard to take Luke's disease a day at a time. It's the only way. All of the doctors have told us that EB patients, especially babies, can seem to be doing perfect and can "turn on a dime."

We had been doing good with no new blisters and then a couple popped up yesterday( I know they are not going away, but after almost a week with nothing new, I can't help but to have hope. We are so thankful that they are still mostly on his fingers and toes and every now and then on his elbows and knee. I am praying God will continue to protect his little face and organs!

Most of you follow the Garrett's blog and have read what she wrote about the GI doctor at Texas Children's that is willing to take over Luke's case...GREAT NEWS! He knows about EB, but more importantly, he said that the head of the GI department would be the one who would be doing the actual scope procedure and he happens to know even more about EB and has done it before on EB patients! This is very comforting news for us because soooo many doctors are not familiar with this rare disease. (our pedi says this is the first and most likely the last case of EB he will ever see) I can't say it enough...GOD IS DOING SOMETHING HERE! I don't' believe this happens by coincidence. Also, our pedi. happens to know these doctors too and told me that they were great! Speaking of pediatricians, I have to say that I am very impressed with ours and the entire practice. They are all (5 in the practice) proclaimed Christians. Both Luke and James Thomas go to this practice and both of our doctors have called to check up on us and told us that they are praying for our boys! It is refreshing to be in a city of 5 million and be in the hands of caring, personable doctors. Let me tell you, Luke and now James Thomas are popular babies with Bluefish Pediatrics!

I am calling the dermatologist today to see what the hold up is on Luke's biopsy. We are supposed to be getting the final diagnosis on the type of his EB soon...more on that later. UPDATE: right after I typed this I got a text message from our pedi. Dr. J. YES, you read that right, a TEXT from his cell phone letting me know that he called Texas Children's this morning to try and get the biopsy results for us and to give Luke his love. I know God has put us in the hands of good doctors. Praise Him.

Thanks again for all of the love, support, and prayers. I always smile when I hear that someone is praying for our sweet baby! Gotta run...Luke is starving!

PS..THANKS TO AMANDA YOCUM for the sweet 'prayer buttons!'

pics...

Here are the pictures that I meant to put on the last post... (for those not familiar with blogger...scroll down and click older post to see previous posts)

so much to say...

It has been crazy here on Rincon Dr. I did not have a computer in the hospital, therefore, no updates on the blog!

Before I begin updating the life of the Jones family, I have to write about our very best friends. Most of you know about sweet James Thomas Garrett and all that he, Lindsay, and James are going through. Please pray for them. Lift them up in every way...especially tomorrow morning as JT will be undergoing a procedure to test his bone marrow. PRAY FRIENDS...for the doctors, for PEACE and COMFORT for Lindsay and James, for no pain for little James Thomas, for a positive and hopeful outcome, that James Thomas IS making red blood cells on his own, and that the whole experience goes smoothly. My heart physically aches for them. The days after finding about Luke's disease, I remember telling Greg that I hope no one I know has to experience these feelings. Who would have thought our best friends...who we have endured so much together already, would have to go through a similar situation. WHY WHY WHY!? Lindsay said it best..."it makes me believe in God more!" I completely agree. He is doing something...something surely to be SO BIG. Sweet James Thomas and Luke already have so much in common and they have NO idea! We love JT so much.

It has been so long since my last post...I will try to be brief in the details of the past couple of weeks...Luke was admitted to Texas Children's last Friday for 'Failure to Thrive.' He was not eating well and not gaining weight. Not gaining can be related to his EB. There can be internal blistering on his organs. They did an upper GI test and it did not show any restrictors in his esophagus (praise #1) but did show severe reflux. We have been on reflux meds but realized Luke needed a much higher does. He also saw an ear, nose, and throat doctor who stuck a camera down his throat to look at his voice box. It is pretty irritated but nothing serious was found there either. (praise #2) After much discussion, our GI and ENT doctors wanted to do a procedure under anesthesia...sticking a scope in both ends to see his airways and his organs looking for any type of restrictors and blistering. This can be a very risky procedure as he could blister all the way down from the scope. Lots of details later, our GI doc. talked with our dermatologist to confirm the risks related to his EB. Ultimately Greg and I had to make the final decision, so we decided NOT to go through with it yet. We wanted to bring him home and see if he can thrive on his own. He is currently on a higher calorie formula and a higher dose of reflux medication. We go to the pedi frequently for weight checks. As of now, Luke is gaining and eating a little bit better (praise #3). We have follow ups scheduled with our team of doctors at Texas Children's to monitor his condition. It is not uncommon for EB patients to have eating issues. Many people battling this disease will go on and off feeding tubes throughout their life. We just want to wait as long as possible before we go inside and look! He is so little!

I continue to be in awe of Greg. I can't lie...it has been stressful around here. He has done an amazing job at balancing work, me, and a sick baby. He continues to help me so much. He embraces me when I cry and is forgiving when I mess up. Thank you my love. You are more than I imagined in a husband.

I continue to feel overwhelmed with the wonderful group of friends and family we are surrounded by. I apologize to so many who I have yet to get back to. I promise I will. NOTHING has gone unnoticed. Thank you to all who have come and helped, brought dinner, brought a gift, called, texted, emailed, and facebooked! We could not get through this without you. NOT AT ALL!

Here are a few pics from our time at Texas Children's and the last week or so... A special thanks to Lindsay who is great at capturing moments. I brought my camera but I rarely use it, so I think most of the hospital pics were taken by her! UPDATE..pics won't upload...I will try again tomorrow.

Luke's latest - 1 month old

A quick update on our boy...

We went to the pedi. yesterday to get his stitches removed and for a weight check. I thought he had gained for sure and would be well over 10 pounds...he was exactly the same as last week! ugh. At least he did not lose. Praise for that!

Due to his eating and continued tummy issues, Dr. J. called Texas Children's ASAP to get us in to see a GI doctor. He thought with Luke not improving too much after being on 2 reflux meds and a really mild formula, that the EB might be what is affecting his eating. We HOPE not. If that is the case, Luke will have to be scoped and with him being so little, this can be a dangerous process and could also cause blistering all the way down. We are scheduled on Tuesday to do a upper GI (where he will drink barium and be x-rayed) to see how much damage there is down his esophagus. We are anticipating damage due to his hoarse cry getting worse. After that, we will meet with the GI doctor on Friday and go from there.

Dr. B. (our dermatologist) called yesterday with the biopsy results. She says that his EB is highly favoring the Simplex type. We have been doing quite a bit of research on the various types of EB. Of the 3 types, there is not one that is necessarily better than the other. Each one has subtypes...some better than others. His biopsy is being sent to another specialist to see specifically what type of the simplex and give us more info. After discussing this with Dr. B. and letting her know Luke's condition as of now, she has called an Ear/Nose/Throat specialist and we are going TOMORROW! She seemed concerned that he is now wheezing a bit and that his cry has gotten worse. Respiratory problems can be linked to EB.

So now we have a team of doctors for Luke. (Pedi/GI/ENT/DERM) I have read this is normal for EB patients. We are praying to get the GI and respiratory issues squared away. These can be potentially life threatening. Thanks again for the prayers and numerous letters, emails, and comments. I am feeling a bit more at peace...knowing that nothing is in our control...it's in His. I love this little boy more and more everyday. He is quite the fighter and is already getting used to us taking care of his little hands and feet!