We have now been here at CHOP for almost 5 weeks. It has been a long arduous process. Isaiah continues to improve daily, though it has been infinitesimally slow. We will still be here another 6-8 weeks, unless he makes some dramatic change for the better.
Thankfully, he has stopped dumping out the ostomy and has been able to start back on real food. He is not eating much, but we are hoping the more he eats, the more the doctors can back off the TPN/Lipids. The TPN/Lipids are still affecting his liver negatively. At one point, his liver function tests started to decrease (which is good), but now the levels are starting to go back up again (which is bad). The docs are not sure why they are going up and don't seem very concerned, but I am because Isaiah has never had problems before being on TPN/Lipids. So, for some unknown reason his liver is not filtrating correctly. Please pray that God protects Isaiah's liver and the rest of his little body.
Praises:
1. Isaiah is gaining weight.
2. His outbursts and negative/abusive behavior has decreased significantly. I think it has helped to have breaks from us on the weekends. Thank you to those who have been spending days/nights with Isaiah to allow us time away from the hospital.
3. Josiah has been able to stay down here with us, and we have found some fun and free activities to do together.
4. The Lord has opened up doors for us to share our faith in Christ. Because we struggle with this path of disability, and are not ashamed to say it is difficult and we struggle with God's sovereignty, people feel free to talk to us and share their doubts about God. Struggling together gives us a freedom we would have never experienced if Isaiah were not here.
5. The floors in the boy's rooms at home have been replaced. A HUGE THANK YOU to Charles, Jake, Dan, Josh, Chris, Glenn for helping us out with this.
Prayer Requests:
1. For Isaiah's liver and the rest of his body to be protected from the TPN/Lipids and medications/therapies.
2. For the following children: they are either fighting for their lives or are seriously physically compromised from disabilities: Grace (4yrs. old from Florida), Hugo (preemie, born at 24 weeks), Marie (newborn from Egypt), Jenny (newborn from Egypt), Fatima (newborn from New Jersey), and Abdul (8 month old from NJ). We have seen prayer work and the parents would greatly appreciate your support.
Thank you again for continuing to pray and support us.
Wednesday, July 25, 2012
Monday, July 16, 2012
MOVING SLOWLY AHEAD...
This past Thursday we had a team meeting for Isaiah. We discussed his pain, his anxiety, and the doctor's plan for his stay. For the most part, it was a productive meeting; however, both Chris and I still feel that the doctors don't fully believe us in regards to Isaiah's pain levels. As of right now, Dr. Collins, the surgeon, believes Isaiah will be at CHOP for another 6-8 weeks. UGH!!! His bowels are still not absorbing the nutrients and fluids necessary for him to come off of the IV nutrition (TPN/Lipids). He continues to dump out into the ostomy bag (stomach/poop bag) causing his electrolytes in his blood work to be unstable. They are trying him out on actual food by mouth to see if his gut can absorb food better than the TPN/Lipids. Plus, the Lipids are affecting his liver negatively.
So in short,
GOOD NEWS:
1. Isaiah is able to eat by mouth
2. He is up walking and playing
3. We have a time frame in regards to his hospital stay
BAD NEWS:
1. We have another 6-8 weeks at CHOP
2. His reversal surgery of the ostomy cannot be performed until he is more
medically stable and absorbing nutrients
3. He is still having pain
4. Isaiah has been having dangerous, angry meltdowns that lead him to try to hurt others and/or hurt himself by pulling off his ostomy appliances or trying to pull out his PICC (IV) line. He is like a Dr.Jekyll/Mr.Hyde. When that switch flips, Isaiah is out of control and needs to be restrained or sedated. It is incredibly frustrating for us. Usually, Isaiah is cooperative, but lately these fits have been coming more and more frequently.
5. Isaiah has significant anxiety and cannot be left alone. In the past, we have been able to leave him alone for a few hours or overnight and he is fine. Now, he becomes inconsolable if we tell him we are leaving or if he finds us gone.
6. We have spent the months of February, March, April, June, and July in a hospital or rehab setting. This has become very difficult on all of us. I think Josiah gets the worst of it, because he has to be switched from place to place, and has been separated from us the most.
7. My relationship with Isaiah is very strained because of having to be with him in restrictive quarters for the past 6+ weeks. It's incredibly hard for me at times to be around him.
Please continue to pray. We are all really struggling. We are grateful to those whom have come down or up to stay with Isaiah either during the days and/or overnights. I think it's a nice break for him and a very necessary break for us. Thank you for all your gifts and words of encouragement--they keep us going.
--Pray for Josiah with all the moving around.
--Pray for Chris as his job is in the middle of a merger with people quitting and departments being reorganized.
--Pray for my neck/back/hips. I am still having pain from the accident and do need follow up visits with doctors, but I really don't have the ability to follow through at this time.
--Pray that Isaiah's gut starts absorbing and tolerating food/nutrients, that he has fewer meltdowns and/or stays safe during his meltdowns.
--Pray for my relationship with Isaiah.
--Pray that we can go safely home sooner than later. I am missing Josiah immensely. He brings me so much happiness, and when I am not around him, my world is a bit darker/sadder. I just wish we could be home and all be healthy.
--Pray for my relationship with God. I'll admit I am angry with Him and frustrated. This situation takes a lot of strength and endurance and I am plain exhausted, as is Chris. I don't want to keep walking this path God has chosen; I want a break. Somehow, I need to trust God and give Him this whole situation so I can rest peacefully in Him. Right now, I am fighting Him because I just don't know how else to survive.
So in short,
GOOD NEWS:
1. Isaiah is able to eat by mouth
2. He is up walking and playing
3. We have a time frame in regards to his hospital stay
BAD NEWS:
1. We have another 6-8 weeks at CHOP
2. His reversal surgery of the ostomy cannot be performed until he is more
medically stable and absorbing nutrients
3. He is still having pain
4. Isaiah has been having dangerous, angry meltdowns that lead him to try to hurt others and/or hurt himself by pulling off his ostomy appliances or trying to pull out his PICC (IV) line. He is like a Dr.Jekyll/Mr.Hyde. When that switch flips, Isaiah is out of control and needs to be restrained or sedated. It is incredibly frustrating for us. Usually, Isaiah is cooperative, but lately these fits have been coming more and more frequently.
5. Isaiah has significant anxiety and cannot be left alone. In the past, we have been able to leave him alone for a few hours or overnight and he is fine. Now, he becomes inconsolable if we tell him we are leaving or if he finds us gone.
6. We have spent the months of February, March, April, June, and July in a hospital or rehab setting. This has become very difficult on all of us. I think Josiah gets the worst of it, because he has to be switched from place to place, and has been separated from us the most.
7. My relationship with Isaiah is very strained because of having to be with him in restrictive quarters for the past 6+ weeks. It's incredibly hard for me at times to be around him.
Please continue to pray. We are all really struggling. We are grateful to those whom have come down or up to stay with Isaiah either during the days and/or overnights. I think it's a nice break for him and a very necessary break for us. Thank you for all your gifts and words of encouragement--they keep us going.
--Pray for Josiah with all the moving around.
--Pray for Chris as his job is in the middle of a merger with people quitting and departments being reorganized.
--Pray for my neck/back/hips. I am still having pain from the accident and do need follow up visits with doctors, but I really don't have the ability to follow through at this time.
--Pray that Isaiah's gut starts absorbing and tolerating food/nutrients, that he has fewer meltdowns and/or stays safe during his meltdowns.
--Pray for my relationship with Isaiah.
--Pray that we can go safely home sooner than later. I am missing Josiah immensely. He brings me so much happiness, and when I am not around him, my world is a bit darker/sadder. I just wish we could be home and all be healthy.
--Pray for my relationship with God. I'll admit I am angry with Him and frustrated. This situation takes a lot of strength and endurance and I am plain exhausted, as is Chris. I don't want to keep walking this path God has chosen; I want a break. Somehow, I need to trust God and give Him this whole situation so I can rest peacefully in Him. Right now, I am fighting Him because I just don't know how else to survive.
Thursday, July 5, 2012
HAPPY 4th...
Thanks to my mother-in-law, Viviane, staying with Isaiah overnight, we were able to have a really enjoyable time with my immediate and extended family at a picnic and then fireworks. We really needed that time to relax, laugh, and have fun. Plus, it was nice to see Josiah run, play, and just enjoy being a little boy.
We continue to covet your prayers and support. Isaiah is out of ICU, however, he is expected to have a long recovery. Best case scenario, Isaiah's bowels recover enough for reversal surgery before discharge in 2-3 weeks. Worst case, we are stuck her for another 6-8 weeks. Isaiah has been having trouble absorbing nutrients and fluids through his stomach and bowels, and the doctors have had to replace this loss daily. If he continues to lose nutrients, he will have to stay on IV nutrition much longer until he is stable enough for another surgery. Also, we are still dealing with pain management issues. We continue to fight with doctors on how much and how often to medicate Isaiah for comfort.
We are now staying at the Ronald McDonald House. We really enjoyed staying at our friend Sarah's apartment. It was nice, clean, and quiet. However, for Josiah's sake, once the Ronald House had an opening, we accepted a room. There are kids here for him to play with as well as a game room and playground. The House allows for some normalcy for Josiah.
Many ask how we are doing, how we are holding up--well, to be honest, we are incredibly exhausted. Josiah said the other day he is sad because we are not home and that he misses his room. Isaiah is completely out of sorts and has been very difficult to work with and even to be around. This particular hospitalization has been excruciatingly draining.
Besides Isaiah's condition, I think one of the hardest things we are dealing with is disappointment. We thought we saw a light at the end of the tunnel with Good Shepherd's rehab clinic with only 2-3 weeks left in Isaiah's program. Isaiah was doing so well with eating and drinking. Now, we are back at square one. We were looking forward to finally having less people coming through our home every day, ie. nurses, therapists, case managers. For the past 3 years, our house has not been a home, but more like a hospital/treatment/rehab/recovery center for Isaiah. As much as we appreciate all the help we receive for Isaiah, we really long for privacy and to have a safe haven all our own.
Please pray for the following:
1. For rest--that when we do get a break, that we can actually sleep and recuperate.
2. For Isaiah--for quick recovery, pain relief, that his stomach/bowels start absorbing nutrients, and that his fun, obedient, and sweet spirit comes back.
3. For Josiah--that he knows how much we love him and are here for him.
4. For Chris--safety as he commutes back and forth for work. Also, his work is going through a buyout and reconstruction which adds more stress and confusion in his work life.
5. For my neck/back--on Sunday, I headed back to HUP for more tests on my back. I was experiencing numbness in both of my arms for 2 days which was taking awhile to resolve. They did an MRI of my neck and and x-ray of my back--both of which came back normal. I am still having periodic muscle spasms from the accident.
A big thanks to my mom, Lois, that took time off work, flew up from TN, to give us a few nights off from CHOP. Also, to my brother, Doug and my new sister-in-love, Sarah, for also staying at CHOP with Isaiah. Our other friend, Sarah, is going to take the next 2 nights for us. We don't know what we would do without these breaks. Thank you again for all your prayers, support, gifts, emails, calls, letters, etc. We really are very dependent on your strength and love. Somehow, we hope that through all of this, God's name will be glorified and that we can see Him working. Sometimes it's just hard to see His goodness in the midst of all of this.
We continue to covet your prayers and support. Isaiah is out of ICU, however, he is expected to have a long recovery. Best case scenario, Isaiah's bowels recover enough for reversal surgery before discharge in 2-3 weeks. Worst case, we are stuck her for another 6-8 weeks. Isaiah has been having trouble absorbing nutrients and fluids through his stomach and bowels, and the doctors have had to replace this loss daily. If he continues to lose nutrients, he will have to stay on IV nutrition much longer until he is stable enough for another surgery. Also, we are still dealing with pain management issues. We continue to fight with doctors on how much and how often to medicate Isaiah for comfort.
We are now staying at the Ronald McDonald House. We really enjoyed staying at our friend Sarah's apartment. It was nice, clean, and quiet. However, for Josiah's sake, once the Ronald House had an opening, we accepted a room. There are kids here for him to play with as well as a game room and playground. The House allows for some normalcy for Josiah.
Many ask how we are doing, how we are holding up--well, to be honest, we are incredibly exhausted. Josiah said the other day he is sad because we are not home and that he misses his room. Isaiah is completely out of sorts and has been very difficult to work with and even to be around. This particular hospitalization has been excruciatingly draining.
Besides Isaiah's condition, I think one of the hardest things we are dealing with is disappointment. We thought we saw a light at the end of the tunnel with Good Shepherd's rehab clinic with only 2-3 weeks left in Isaiah's program. Isaiah was doing so well with eating and drinking. Now, we are back at square one. We were looking forward to finally having less people coming through our home every day, ie. nurses, therapists, case managers. For the past 3 years, our house has not been a home, but more like a hospital/treatment/rehab/recovery center for Isaiah. As much as we appreciate all the help we receive for Isaiah, we really long for privacy and to have a safe haven all our own.
Please pray for the following:
1. For rest--that when we do get a break, that we can actually sleep and recuperate.
2. For Isaiah--for quick recovery, pain relief, that his stomach/bowels start absorbing nutrients, and that his fun, obedient, and sweet spirit comes back.
3. For Josiah--that he knows how much we love him and are here for him.
4. For Chris--safety as he commutes back and forth for work. Also, his work is going through a buyout and reconstruction which adds more stress and confusion in his work life.
5. For my neck/back--on Sunday, I headed back to HUP for more tests on my back. I was experiencing numbness in both of my arms for 2 days which was taking awhile to resolve. They did an MRI of my neck and and x-ray of my back--both of which came back normal. I am still having periodic muscle spasms from the accident.
A big thanks to my mom, Lois, that took time off work, flew up from TN, to give us a few nights off from CHOP. Also, to my brother, Doug and my new sister-in-love, Sarah, for also staying at CHOP with Isaiah. Our other friend, Sarah, is going to take the next 2 nights for us. We don't know what we would do without these breaks. Thank you again for all your prayers, support, gifts, emails, calls, letters, etc. We really are very dependent on your strength and love. Somehow, we hope that through all of this, God's name will be glorified and that we can see Him working. Sometimes it's just hard to see His goodness in the midst of all of this.
Friday, June 29, 2012
ONE STEP AT A TIME...
Isaiah is still in ICU, but every day is a little better. According to his surgeon, Isaiah is doing much better than he had anticipated in spite of all the damage, inflammation, leakage of toxins into his abdomen, and amount of dilated bowels which were on the verge of perforating (exploding open). He continues to have a lot of pain and we are still struggling to get it under control with the appropriate medications.
Today he is getting a PICC line placed, which is an IV that can be used long-term. His central IV line (TLC) will be taken out today, while all other lines have already been removed, which is encouraging. He continues to be on IV nutrition, and will be for awhile to allow for bowel rest and healing. It will be at least another week before they start tube feeds--they will be very conservative in reintroducing foods.
Yesterday, Isaiah sat up for 1.5 hrs at bedside playing with his toys and painting. He was so cute and it was nice to see him up and interacting with his 3 therapists. Hopefully, we will get him up to walk today, once the central line is out.
Thank you again for all the support you've given to us. We will be here for approximately another 3 weeks. We do have a place to stay in town, thanks to some wonderful friends of ours. God has been good, even though the situation has been extremely difficult.
Today he is getting a PICC line placed, which is an IV that can be used long-term. His central IV line (TLC) will be taken out today, while all other lines have already been removed, which is encouraging. He continues to be on IV nutrition, and will be for awhile to allow for bowel rest and healing. It will be at least another week before they start tube feeds--they will be very conservative in reintroducing foods.
Yesterday, Isaiah sat up for 1.5 hrs at bedside playing with his toys and painting. He was so cute and it was nice to see him up and interacting with his 3 therapists. Hopefully, we will get him up to walk today, once the central line is out.
Thank you again for all the support you've given to us. We will be here for approximately another 3 weeks. We do have a place to stay in town, thanks to some wonderful friends of ours. God has been good, even though the situation has been extremely difficult.
Tuesday, June 26, 2012
UNCONTROLLED PAIN...
Yesterday, Isaiah was stable enough to have his breathing tube removed as well his arterial line that monitored his blood pressure continuously. Even though he is breathing on his own, a big praise, we are unfortunately dealing with him having uncontrolled pain. He hasn't slept well in several days and has been unbelievably uncomfortable and often cries out in pain, even in the middle of his sleep. It's been excruciating watching him be in pain and not be able to do anything about it. We have been fighting with the doctors to achieve proper pain control. They have been very slow in upping the strength of the narcotics because they are afraid of slowing his respiratory system. But, we continue on and hope today is the day they figure out the perfect combination of pain meds.
Just continue to pray for healing for his little body. He just lays there, unsmiling, not moving, not talking. It's heartbreaking.
Just continue to pray for healing for his little body. He just lays there, unsmiling, not moving, not talking. It's heartbreaking.
Sunday, June 24, 2012
IMPROVEMENT...
Praise the Lord Isaiah has been taking continual small steps towards recovery! He is no longer critical, but guarded, meaning medically stable but still monitored closely in ICU. Even though he is still on the breathing tube and usually sedated, he has had periods of lucidity. He has been answering questions by nodding yes or no, following commands, and repositioning his "blue bear" to have it close by his side. He continues to have a lot of pain and the nurses have had to give him extra doses of pain medication to make him comfortable. Tomorrow they are planning to take his breathing tube out and hopefully his NG tube as well. We have been blessed with amazing and understanding nurses and other medical staff. It has made this situation much easier for us. They have been taking excellent care of Isaiah.
Josiah came down today with my brother David to visit us. It was too overwhelming for him to see Isaiah, but we said that was ok and it was very brave for him to come down to CHOP. Chris and I really enjoyed playing with Josiah, hugging him, tickling him, and having dinner with him. We really miss him and are grateful to Dave for bringing him down. Josiah said when Isaiah gets his breathing tube out, he will spend time visiting and talking to Isaiah. Also, our pastor from Calvary, Bill Tarr, came and prayed over Isaiah. One can never underestimate the power of God's people praying. We are thankful for godly leadership that take time for us.
Thank you for all the emails, texts, calls, etc. We have been encouraged by you. As for me, I am much more sore today, but surviving. Tomorrow, my mom will be coming up from TN to help us out. It'll be nice to have an extra set of hands.
Please pray for the following:
1. That we will be able to get into the Ronald McDonald House.
2. That Isaiah continues to improve.
3. That everything with the insurances work out for car repair and hospital coverage from my car accident.
4. That my soreness resolves quickly and that I don't have any residual negative effects from the accident.
Josiah came down today with my brother David to visit us. It was too overwhelming for him to see Isaiah, but we said that was ok and it was very brave for him to come down to CHOP. Chris and I really enjoyed playing with Josiah, hugging him, tickling him, and having dinner with him. We really miss him and are grateful to Dave for bringing him down. Josiah said when Isaiah gets his breathing tube out, he will spend time visiting and talking to Isaiah. Also, our pastor from Calvary, Bill Tarr, came and prayed over Isaiah. One can never underestimate the power of God's people praying. We are thankful for godly leadership that take time for us.
Thank you for all the emails, texts, calls, etc. We have been encouraged by you. As for me, I am much more sore today, but surviving. Tomorrow, my mom will be coming up from TN to help us out. It'll be nice to have an extra set of hands.
Please pray for the following:
1. That we will be able to get into the Ronald McDonald House.
2. That Isaiah continues to improve.
3. That everything with the insurances work out for car repair and hospital coverage from my car accident.
4. That my soreness resolves quickly and that I don't have any residual negative effects from the accident.
Saturday, June 23, 2012
EMERGENCY SURGERY...
Isaiah's x-ray at Lehigh Valley Hospital showed a blockage of some sort that required immediate intervention from CHOP doctors. They transported him to CHOP via ambulance. He received an NG tube to decompress his stomach and IV fluids. His NG tube was actually draining stool because his bowels were so backed up.
The CHOP team quickly surmised that Isaiah probably had a blockage due to adhesions from previous surgeries, and needed emergency surgery. He was in there for about 3 hours and they did find an adhesion that created a blockage in his small intestines. They had to remove approximately 30 cm of dead bowel. They gave him an ostomy (opening on the stomach for poop to come out) because they couldn't repair his intestines right away due to all the inflammation.
On the way down, I was rear ended on route 76 by a man who fell asleep at the wheel. Thankfully, I was able to drive my car the short distance to CHOP, but it may be totalled. My brother-in-law, Andre, came to the ER, since Chris couldn't get there right away to help me and support Isaiah. My back and neck really hurt and required being seen at HUP. I went there after Isaiah went into surgery. Chris walked me over, and then went back to be with Isaiah.
Now the bad news...Isaiah is in critical condition because his body went into shock during surgery because of the necrotic bowel, loss of blood and fluids, and infection. He is currently intubated (on a breathing tube), on dopamine to stabilize his blood pressure, and has received 1 unit of blood and 3 liters of fluid. He is needing a central IV line and an A-line for blood pressure maintenance, IV antibiotics, and other IV access. He will be here at least 2 weeks.
1) Please pray for Isaiah that his little body will recover and he will return to his normal mischievous self. He was playing yesterday in a pool. It's amazing how quickly life can change and take a turn for the worse.
2) Pray that the pain in my back, neck, and legs resolve quickly.
3) Pray for Josiah who has been moving from place to place and misses us all being home together. He really misses his little brother.
4) [CHRIS]: Pray that I can be the strength my family needs to get through this, and that I can get Joy's car taken care of this week so she is not stranded without a car. Pray that I am able to manage all this and still get my work done at my job.
Thank you all for being with us through this. We couldn't have come this far without all of you and your support. We would have drowned a long time ago if you had not interceded on our behalf before God.
The CHOP team quickly surmised that Isaiah probably had a blockage due to adhesions from previous surgeries, and needed emergency surgery. He was in there for about 3 hours and they did find an adhesion that created a blockage in his small intestines. They had to remove approximately 30 cm of dead bowel. They gave him an ostomy (opening on the stomach for poop to come out) because they couldn't repair his intestines right away due to all the inflammation.
On the way down, I was rear ended on route 76 by a man who fell asleep at the wheel. Thankfully, I was able to drive my car the short distance to CHOP, but it may be totalled. My brother-in-law, Andre, came to the ER, since Chris couldn't get there right away to help me and support Isaiah. My back and neck really hurt and required being seen at HUP. I went there after Isaiah went into surgery. Chris walked me over, and then went back to be with Isaiah.
Now the bad news...Isaiah is in critical condition because his body went into shock during surgery because of the necrotic bowel, loss of blood and fluids, and infection. He is currently intubated (on a breathing tube), on dopamine to stabilize his blood pressure, and has received 1 unit of blood and 3 liters of fluid. He is needing a central IV line and an A-line for blood pressure maintenance, IV antibiotics, and other IV access. He will be here at least 2 weeks.
1) Please pray for Isaiah that his little body will recover and he will return to his normal mischievous self. He was playing yesterday in a pool. It's amazing how quickly life can change and take a turn for the worse.
2) Pray that the pain in my back, neck, and legs resolve quickly.
3) Pray for Josiah who has been moving from place to place and misses us all being home together. He really misses his little brother.
4) [CHRIS]: Pray that I can be the strength my family needs to get through this, and that I can get Joy's car taken care of this week so she is not stranded without a car. Pray that I am able to manage all this and still get my work done at my job.
Thank you all for being with us through this. We couldn't have come this far without all of you and your support. We would have drowned a long time ago if you had not interceded on our behalf before God.
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