Thursday, February 23, 2012

POOP HAPPENED...then we went home!

Things happened quite quickly after Isaiah was able to poo Sunday night and tolerate his feeds. We actually were able to come home Tuesday evening. Isaiah has been doing really well since the surgery. The first 4-5 days were really rough with Isaiah having to be medicated around the clock for pretty intense pain. Since then, his pain has been controlled with occasional Tylenol. He has had a few episodes of retching, but has not thrown up since the corrective surgery. We have been able to talk him down from his retching episodes and he has been able to get himself under control. So far, the results have been encouraging. Isaiah's usual response to pain or discomfort has been to vomit. Now that he can't, he has to learn a new way to cope with pain and work through it.

Isaiah's 3rd birthday was Monday, the 20th. Can't believe he is already 3. Seems like yesterday we were celebrating his 1st birthday with all of you. The staff at CHOP made a huge birthday sign for his door, ordered him an ice cream cake, gave him a present, and sang to him. It was a really fun day.

Josiah also celebrated his 5th birthday while we were down at CHOP on Feb. 15th. Time keeps on flying by!!!! What was really special was that the Ronald McDonald House put together a Batman birthday party for the boys on the evening Isaiah was discharged from the hospital. There were Batman banners, toys, plates/cups, gift bags, and so much more!!!! We even had one of our friends, Colleen, from a few visits back there with her son, KeVaughn. The boys also had the privilege of being sung to by a group of girls from Mount St. Joseph's school. Isaiah especially liked being the center of attention from all the girls!!! He's such a flirt!

Thank you for all your continued prayer and support. We still have a long road ahead of us, but so far, so good. Once Isaiah is cleared by surgery (next appointment March 15th), he is heading to an inpatient feeding clinic at Good Shepherd, Bethlehem. Isaiah will be staying at the clinic for 4-8 weeks for intense therapy to re-learn how to eat, swallow, process food. Please pray as we will be separated from Isaiah during that time. We will be able to visit and stay when we can, but we both work and can't stay full time. If any of you are willing, we are looking for people who would like to stay overnight with Isaiah the nights we cannot stay with him at Good Shepherd. We really don't want him to be alone. He has had to be alone alot lately. Thank you again for everything.

Thursday, February 16, 2012


Day 1, Tuesday: In alot of pain, but we were able to take Isaiah down to CHOP's atrium in a wagon to play BINGO and to watch a ballet show by performers from the Philadelphia Dance Academy. He pretty much passed out as soon as we put him back to bed. He has very little endurance because of the pain. Pastor Connors and Pastor Grogan, from our church, came down in the evening to pray over Isaiah.

Day 2, Wednesday: Viviane, Chris's mom, spent the day at CHOP watching Isaiah. This allowed Chris to go to work and me to spend the day with Josiah celebrating his birthday--he turned 5!!! Can't believe it--time just keeps on flying by. I brought Josiah down to CHOP to spend a little time with Isaiah. He has really missed Isaiah. He has been praying daily, "Dear Jesus, please let me see Isaiah again. I really want to see him." It breaks my heart to see how much it affects them when they are separated. They are best buds. Chris then took Josiah home to have some daddy-time on his birthday. We keep trying to make things work even when life keeps handing us crap.

Day 3, Thursday:
Still having an insane amount of pain and continues to be medicated around the clock. He could only tolerate being out of bed for 1 hour today. He did play a bit, which was a small improvement from the past 2 days. Uncle Dave Solt came for a quick visit and prayed over Isaiah. He started on Pedialyte today, but didn't tolerate it. Please pray that Isaiah's bowels start working, that he can tolerate the feeds, and poop. He would do so much better and feel so much better if he could poo.

As of right now, Isaiah will need to stay at CHOP until Tuesday/Wednesday. He is progressing so slowly that his doctors don't expect him to tolerate full feeds anytime soon. We are all exhausted and want to go home. Please pray for a miracle in Isaiah's body. One huge praise--we did get a room at the Ronald McDonald House in Philly--Thanks, Doug! This weekend, we will bring Josiah down to spend time with all of us. We are looking forward to being together.

Thank you to everyone who has been helping us out with watching Josiah, meals, praying for us, and for encouraging us. We really appreciate it!!

Monday, February 13, 2012


Isaiah is such a trooper. His surgeries took 4 1/2 hours, in the OR at 8:30am and out around 1pm. The procedure to fix his stomach took longer than expected due to a large amount of scar tissue from his prior surgeries. It took Dr. Collins over an hour to just release the liver, diaphragm, stomach, abdominal lining, etc. from all of the scarring. Overall, she felt the partial Nissen went well. After the stomach repair, Dr. Zur did the adenoidectomy and replaced his ear tubes. She was also very happy with the results. Thankfully, Isaiah remained stable during the different procedures.

Isaiah has had a lot of pain post-op, and has required both pain and anti-nausea meds around the clock. He is sleeping on and off. It's hard watching him struggle. We can't wait till he is back to his normal, happy self. Please continue to pray. He will be in CHOP for approximately 1 week. Dr. Collins doesn't want to rush the stomach and will slowly reintroduce food/liquids starting tomorrow. This will be a long and slow recovery.

Please continue to pass on our updates. We are unable to make a lot of phone calls right now. We will do our best to update daily. Thank you.


We have an urgent request for prayer today! Isaiah is going in for a partial Nissen Fundoplication--the surgery we have been trying to avoid for the past 2 years because of its complications and failure percentages. However, at this point, we have no other options. This is our last option in trying to help Isaiah stop throwing up every day, to help prevent damage from his severe reflux. For 2 years, Isaiah has thrown up at least once a day. For the past 4-6 months, that has significantly increased to the point he has actually destroyed several of the floors in our home. He is uncomfortable and has become limited in the amount of activities he can participate in. Running, jumping, sneezing, laughing, coughing, standing, etc. can cause him to vomit. There is no rhyme or reason, and nothing non-surgical has been able to prevent this. It has been incredibly frustrating.

This abdominal surgery takes the top of the stomach and wraps it partially around the esophagus, tightening up the sphincter. The purpose is to make it more difficult to burp or vomit or to allow for reflux up the esophagus. Isaiah is also having adenoids removed, due to increased congestion/trouble breathing and his ear tubes replaced due to crusting.

Please pray specifically for:
1. That the surgery is successful and Isaiah will be free from discomfort, reflux, and vomiting.
2. Wisdom for Dr. Joy Collins (General Surgery), for Dr. Karen Zur (ENT), and for the anesthesiologist.
3. Isaiah CANNOT, under any circumstance, throw up post-op. Vomiting can destroy the surgical site and cause a whole new set of complications. He absolutely needs to rest and feel comfortable.
4. For our family--we will not all be together for 7 days. Pray that we will survive all the driving back and forth and separation.
5. Josiah turns 5 on Feb. 15th and Isaiah turns 3 on Feb. 20th. It's been hard for Chris and I knowing we can't be together as a family to celebrate on their birthdays.

I'll be honest--I am completely worried about Isaiah going under general anesthesia again and this complex surgery. I don't want it, nor does Chris. We just don't know what else to do. I don't have the capacity to trust God right now; so, I am asking for the faithful prayer warriors to intercede on my/our behalf. Thank you for praying.