Isaiah is still at CHOP and probably will be there for at least another week. Progress has been moving very slowly. The Cat Scan of his stomach showed no problems with the surgical site. However, it did show that the colon loops abnormally up around and behind the stomach and is filled with a lot of gas (possibly from the new formula). The surgeon has one theory that maybe the gas is making the colon put pressure on the surgical area, which in turn is causing the stomach pain. He has one more scan on Monday to verify that the surgical sites are ok, and then we will move forward from there.
Since Isaiah has been on bowel rest, his pain and retching have decreased significantly, but he still needs to receive pain meds at least twice a day. Also, since not eating or drinking for almost a week, he now wants to eat. Thankfully, his surgeon has allowed him to eat/drink clears. It has been encouraging to know that Isaiah's hunger drive is still present. We have often wondered if he even experienced the sensation of hunger since being on tube feeds for over 2 years.
Here is the tentative medical plan for this week:
1. PICC line placed where Isaiah will receive IV nutrition and fats through it
2. Scan Monday
3. Start on clear foods through stomach tube if scan is clear
4. If tolerates clears through GT, will be advanced to a formula
Our biggest requests are:
1. No infection or sickness for Isaiah--with the PICC line he is at a much higher risk for an infection to get directly into his blood.
2. For safety for us --we are driving continually back and forth between CHOP, home, work, school, and my brother's home.
3. Grace for Josiah--he is continuing to have a hard time being separated from one or all of us.
4. For Isaiah--he is on isolation precautions and cannot leave his room to play. We are all getting a little stir crazy.
5. For Chris and me--In the last 2 months, we have seen little of each other or had time to rest, sit and talk. We have had little time in our own home to recoup and be a family. This is not ideal for a marriage, and we are often fighting against exhaustion, frustration and anger when we are together.
Thank you for your continued prayers and support. Thank you to those whom have come to sit with Isaiah all day to allow us to have a break away from the hospital.
Saturday, March 24, 2012
Tuesday, March 20, 2012
CRYING MY WAY TO THE HOSPITAL...
Isaiah is hospitalized again at CHOP for uncontrolled abdominal pain and trouble breathing. He went to the ER on Sunday, just to be sent home the same day with no resolution. Early Monday morning, Isaiah's nurse woke me up at 5:30am because he was writhing in pain even after 2 doses of pain meds. He was having trouble breathing. I could hear fluid in his lungs, and he had mild retractions with grunting. I was able to reach his surgeon via email and she had us bring him back down to CHOP to be admitted.
So far, no one knows why Isaiah is having uncontrolled abdominal pain. He continues to retch, has bile backing up into his tubing, and has not moved his bowels in 2 days. There may be a blockage, but we won't know til after his cat scan tomorrow (xrays have been negative). No 3 year old should have to endure this much pain. He just cries or retches or just sits around because playing/laughing causes too much pain. Watching him is pure torture and I wish I could take away his pain, so does Chris. This is why I cried my way to CHOP. Isaiah should be running and jumping and enjoying life, not spending his days in pain lying in a hospital bed.
Please pray for all of us. This particular surgery (partial Nissen) with hospitalizations have been incredibly hard on all of us. Josiah was crying the other day saying, "I'm scared." He is worried for Isaiah and often states, "I hope I get to see my brother again." No 5 year old should carry these types of worries. He should be allowed to play and laugh and wake up every day in his home with his family. Every time Isaiah is hospitalized, Josiah needs to go to someone else's house. His scheduled is disrupted and he is separated for days, sometimes weeks, from us.
Pray for a miracle that somehow, someway God will move and touch Isaiah's body and allow our family to be back together soon. Constant separation and constant stress is taking a toll on our marriage, our family, and on each of our spiritual relationships with God. Seeing His goodness in all of this is incredibly difficult. I don't understand the purpose for Isaiah's suffering--so in turn, I question God's sovereignty. I want to wholeheartedly tell my children about God's awesomeness and goodness, but I can't do that right now, and it's killing me.
So far, no one knows why Isaiah is having uncontrolled abdominal pain. He continues to retch, has bile backing up into his tubing, and has not moved his bowels in 2 days. There may be a blockage, but we won't know til after his cat scan tomorrow (xrays have been negative). No 3 year old should have to endure this much pain. He just cries or retches or just sits around because playing/laughing causes too much pain. Watching him is pure torture and I wish I could take away his pain, so does Chris. This is why I cried my way to CHOP. Isaiah should be running and jumping and enjoying life, not spending his days in pain lying in a hospital bed.
Please pray for all of us. This particular surgery (partial Nissen) with hospitalizations have been incredibly hard on all of us. Josiah was crying the other day saying, "I'm scared." He is worried for Isaiah and often states, "I hope I get to see my brother again." No 5 year old should carry these types of worries. He should be allowed to play and laugh and wake up every day in his home with his family. Every time Isaiah is hospitalized, Josiah needs to go to someone else's house. His scheduled is disrupted and he is separated for days, sometimes weeks, from us.
Pray for a miracle that somehow, someway God will move and touch Isaiah's body and allow our family to be back together soon. Constant separation and constant stress is taking a toll on our marriage, our family, and on each of our spiritual relationships with God. Seeing His goodness in all of this is incredibly difficult. I don't understand the purpose for Isaiah's suffering--so in turn, I question God's sovereignty. I want to wholeheartedly tell my children about God's awesomeness and goodness, but I can't do that right now, and it's killing me.
Sunday, March 18, 2012
NOT DOING WELL...
Since discharge from CHOP on Feb. 21st, Isaiah has been struggling with a significant amount of abdominal pain that is only partially controlled by pain medication. Even though the surgery has kept Isaiah from throwing up, it hasn't stopped the urge to vomit. Now, when Isaiah has stomach pain/discomfort, he just retches over and over again. It is painful for us to watch, but even more painful for him to go through. Plus, the retching aggravates the surgical site. We almost wish we could reverse the surgery to allow him to throw up again. At least then, he is only hurting our floors and not his stomach/surgical site.
Then, only a week after discharge, he became really sick. Since March 1st, Isaiah had been fighting a cold which then turned into pneumonia (complicated by asthma/allergies), double ear infections, and a sinus infection. Antibiotics and pain meds have been limited in their scope in helping him recover.
We are asking for you to pray specifically for healing in his little body. He is in alot of pain, having difficulty sleeping and breathing, and he is regularly retching. We don't know what else to do for him. We need God to intervene sooner than later and heal Isaiah.
Then, only a week after discharge, he became really sick. Since March 1st, Isaiah had been fighting a cold which then turned into pneumonia (complicated by asthma/allergies), double ear infections, and a sinus infection. Antibiotics and pain meds have been limited in their scope in helping him recover.
We are asking for you to pray specifically for healing in his little body. He is in alot of pain, having difficulty sleeping and breathing, and he is regularly retching. We don't know what else to do for him. We need God to intervene sooner than later and heal Isaiah.
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.
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
POST-OP...
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!!
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
RECOVERING SLOWLY...
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.
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.
SURGERY TODAY
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.
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.
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