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.
Sunday, June 24, 2012
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.
COMPLICATIONS...BACK TO CHOP
Isaiah was doing really well at Good Shepherd and was reaching his goals. However, he ran into complications with his bowels and ended up at Lehigh Valley Hospital for testing. He is being transferred to CHOP today for a bowel obstruction of some sort. He has an NG tube and IVs right now. He is in a lot of pain, and is quite nauseated. Please pray they find out what and where the blockage is and that it can be easily resolved with or without surgery. I don't know how long we will be at CHOP. Pray for wisdom for the doctors and safety for us as we travel back and forth.
Wednesday, June 13, 2012
FEEDING CLINIC--ONE WEEK DOWN...
Well, we have survived one week of Good Shepherd's feeding clinic. Thank you to those who prayed for us. Isaiah is doing well. He has charmed his way into the hearts of all the nurses, doctors, and therapists. All he has to do is smile at the staff, and he often gets his way. His first day there, he commandeered a tricycle, and has been riding it ever since all over the facility. He hasn't made any real progress yet with eating, but it takes time. The doctor has already cut down on Isaiah's tube feeds, and has required him to eat 3 meals a day with a therapist. They weigh Isaiah daily to make sure he doesn't loose too much weight.
Continue to pray for us. We are doing a lot of running back and forth between home, work, and Good Shepherd. It's exhausting. Also, it's hard being separated from one another. We have a minimum of at least 3 more weeks of this. Thank you to those who are helping out with staying with Isaiah or have been watching Josiah. We greatly appreciate it. We still are looking for people who are willing to stay with Isaiah during the day and/or overnight. We just don't like him being alone. If this is something you are interested in, please email us at isaiahsjourney@yahoo.com.
Continue to pray for us. We are doing a lot of running back and forth between home, work, and Good Shepherd. It's exhausting. Also, it's hard being separated from one another. We have a minimum of at least 3 more weeks of this. Thank you to those who are helping out with staying with Isaiah or have been watching Josiah. We greatly appreciate it. We still are looking for people who are willing to stay with Isaiah during the day and/or overnight. We just don't like him being alone. If this is something you are interested in, please email us at isaiahsjourney@yahoo.com.
Sunday, April 22, 2012
HOME FOR 2 WEEKS...
On April 6th, we came home from CHOP, just in time for Easter. Isaiah was not fully recovered at discharged, but definitely on the road. It took about another week for Isaiah's system to further adjust to his new tube feeds and to recover from C-diff. Every day, he gets a little bit stronger and attempts to take a few more bites of food. YEAH!!!!!
HUGE PRAISE!!! Talk about awesome--for the first time in 3 years we were able to really play with Isaiah, tackle him, tickle him, just really laugh hard together as a family without him throwing up, stopping because of pain, or stop because of retching. This was huge for us and finally a sign that this last surgery was definitely worth the pain and difficulties we experienced.
A tentative date for the feeding clinic has been set for May 21st. Isaiah will go to Good Shepherd, Bethlehem for approximately 4-8 weeks. It is an inpatient program, so he will be there full time, except for the CHOP visits down in Philadelphia. We are still asking for help to spend time up at Good Shepherd with Isaiah during the day and overnights. Chris and I need a little break from all the running. Plus, we need others to learn the feeding methods in order to help us help Isaiah. Please let us know if this is something you would be willing to do. You can contact us through our email at isaiahsjourney@yahoo.com.
Thank you again to all of you that have helped us out over the past 3 months. We couldn't have made it without your support, prayers, meals, letters of encouragement, and other gifts. Each of you play an integral part in this journey with Isaiah.
Please pray for the following:
1. Success at the feeding clinic for Isaiah.
2. That our insurance will help cover replacing the floors that have been ruined from the past 2 years of vomiting and leaking tube feeds.
3. For Josiah--he has been struggling recently with significant asthma flare ups, partly related to the carpeting issue. Pray for his health and also for his sensitive heart as he will be separated again from Isaiah for 4-8 weeks. Josiah didn't do well with being separated so often over these past 3 months.
HUGE PRAISE!!! Talk about awesome--for the first time in 3 years we were able to really play with Isaiah, tackle him, tickle him, just really laugh hard together as a family without him throwing up, stopping because of pain, or stop because of retching. This was huge for us and finally a sign that this last surgery was definitely worth the pain and difficulties we experienced.
A tentative date for the feeding clinic has been set for May 21st. Isaiah will go to Good Shepherd, Bethlehem for approximately 4-8 weeks. It is an inpatient program, so he will be there full time, except for the CHOP visits down in Philadelphia. We are still asking for help to spend time up at Good Shepherd with Isaiah during the day and overnights. Chris and I need a little break from all the running. Plus, we need others to learn the feeding methods in order to help us help Isaiah. Please let us know if this is something you would be willing to do. You can contact us through our email at isaiahsjourney@yahoo.com.
Thank you again to all of you that have helped us out over the past 3 months. We couldn't have made it without your support, prayers, meals, letters of encouragement, and other gifts. Each of you play an integral part in this journey with Isaiah.
Please pray for the following:
1. Success at the feeding clinic for Isaiah.
2. That our insurance will help cover replacing the floors that have been ruined from the past 2 years of vomiting and leaking tube feeds.
3. For Josiah--he has been struggling recently with significant asthma flare ups, partly related to the carpeting issue. Pray for his health and also for his sensitive heart as he will be separated again from Isaiah for 4-8 weeks. Josiah didn't do well with being separated so often over these past 3 months.
Thursday, April 5, 2012
MOVING FORWARD...
I know you are sitting on the edge of your seat, with bated breath, wondering what is going on with Isaiah. Well, we are finally moving in the right direction towards discharge. So far, Isaiah has been tolerating his new tube feeds without pain or retching. He still has periods of gas, but no where near the amount he did with the initial formula. He continues to take a few bites of his meals, but no more than 7 bites at a time. Unfortunately, he has yet to move his bowels without any assistance. He will get another x-ray of his abdomen today to make sure he is not backed up again with poop. If Isaiah tolerates his bolus tube feeds today with his overnight continuous feed at full strength/volume and his x-ray is ok, he may go home tomorrow.
Once he is stabilized and healthy, we will try to send him to Good Shepherd's feeding clinic in Bethlehem. He continues to have many issues with textures, a hyperactive gag reflex, and trouble with biting/chewing/swallowing foods. But, the clinic is still a ways off as of right now.
A new issue arose this admission. Pulmonary did a CT scan of his sinuses to see if there were any abnormalities due to the fact Isaiah has had many lung/sinus/ear infections since birth. What he found was that Isaiah's 3 sinus cavities (4th is still developing) were completely filled with mucous. The doctor doesn't know if this is an acute infection, that has not been affected by current antibiotics, or if this is related to a syndrome called Primary Ciliary Dyskinesia or PCD. You can look up PCD at http://www.med.unc.edu/pulmonary/areas-and-programs/pcd-research-treatment-at-unc. Isaiah will need to come back in the next couple of months to have biopsies taken from his lungs and nasal passages to confirm this diagnosis.
Things to pray for:
1. Continued healing for Isaiah
2. Continued strength and health for all of us.
3. Continued safety as we drive back and forth between CHOP, home, Josiah, work, etc.
4. That we can work out Isaiah's continued care with the state of PA for PT/OT/Speech/Behavioral therapists. Right now, since turning 3, the state wants to cut out all of Isaiah's therapies, except behavioral.
5. That I can return back to work soon--I've been out from work for the past 3 weeks.
We often get asked, "What can we do to help?" Here are some ideas:
1. First and foremost, PRAY!!!! Exhausted doesn't even begin to describe how we feel at this moment and we are totally depending on your strength and your personal relationship with God to carry us through.
2. Gas cards
3. Grocery cards
4. Meals
5. Babysitting
Once again, thank you to all who have been regularly upholding us up in prayer, or have been helping us out through meals, watching Josiah, and other gifts. We greatly appreciate it. God bless you as you have blessed us.
Have a wonderful Easter remembering the life, death, and resurrection of our wonderful Lord and Saviour, Jesus Christ.
Once he is stabilized and healthy, we will try to send him to Good Shepherd's feeding clinic in Bethlehem. He continues to have many issues with textures, a hyperactive gag reflex, and trouble with biting/chewing/swallowing foods. But, the clinic is still a ways off as of right now.
A new issue arose this admission. Pulmonary did a CT scan of his sinuses to see if there were any abnormalities due to the fact Isaiah has had many lung/sinus/ear infections since birth. What he found was that Isaiah's 3 sinus cavities (4th is still developing) were completely filled with mucous. The doctor doesn't know if this is an acute infection, that has not been affected by current antibiotics, or if this is related to a syndrome called Primary Ciliary Dyskinesia or PCD. You can look up PCD at http://www.med.unc.edu/pulmonary/areas-and-programs/pcd-research-treatment-at-unc. Isaiah will need to come back in the next couple of months to have biopsies taken from his lungs and nasal passages to confirm this diagnosis.
Things to pray for:
1. Continued healing for Isaiah
2. Continued strength and health for all of us.
3. Continued safety as we drive back and forth between CHOP, home, Josiah, work, etc.
4. That we can work out Isaiah's continued care with the state of PA for PT/OT/Speech/Behavioral therapists. Right now, since turning 3, the state wants to cut out all of Isaiah's therapies, except behavioral.
5. That I can return back to work soon--I've been out from work for the past 3 weeks.
We often get asked, "What can we do to help?" Here are some ideas:
1. First and foremost, PRAY!!!! Exhausted doesn't even begin to describe how we feel at this moment and we are totally depending on your strength and your personal relationship with God to carry us through.
2. Gas cards
3. Grocery cards
4. Meals
5. Babysitting
Once again, thank you to all who have been regularly upholding us up in prayer, or have been helping us out through meals, watching Josiah, and other gifts. We greatly appreciate it. God bless you as you have blessed us.
Have a wonderful Easter remembering the life, death, and resurrection of our wonderful Lord and Saviour, Jesus Christ.
Saturday, March 31, 2012
GOOD NEWS, BAD NEWS...
Good news... Isaiah has been tolerating a small amount of food by mouth since Wednesday and has been taking in tube feeds without complications. He's in great spirits, but is going stir crazy--I think we all are. The dietitian is doing daily calorie counts to see how much Isaiah is eating by mouth which in turn can lead to one less tube feed, YEAH!! He has been pain free for at least a week, with only intermittent bouts of gas pains.
Bad News... The doctors are saying ONE MORE WEEK, UGH!!!!! They have been very conservative in restarting Isaiah's feeds. They want to slowly restretch his stomach and to try to let his body acclimate to the feeds. He continues to need assistance in moving his bowels. Unfortunately, his bowels haven't normalized yet since the surgery. Also, he is on isolation precautions for Rhinovirus and C-diff. This means he can't go to the play room or down to the cafeteria. Pretty much, we are sequestered to his room.
If anyone is interested, we would greatly appreciate someone to come and sit with Isaiah during the day at CHOP from about 8am-7pm. This would allow me to stay home with Josiah (he's off this week for Easter) and allow Chris to go to work. This hospitalization has been incredibly difficult on all of us and this would give us a little reprieve. Please call Chris or me if this is something you would be able to do.
Thank you again for your continued prayers, emails, and words of encouragement.
Bad News... The doctors are saying ONE MORE WEEK, UGH!!!!! They have been very conservative in restarting Isaiah's feeds. They want to slowly restretch his stomach and to try to let his body acclimate to the feeds. He continues to need assistance in moving his bowels. Unfortunately, his bowels haven't normalized yet since the surgery. Also, he is on isolation precautions for Rhinovirus and C-diff. This means he can't go to the play room or down to the cafeteria. Pretty much, we are sequestered to his room.
If anyone is interested, we would greatly appreciate someone to come and sit with Isaiah during the day at CHOP from about 8am-7pm. This would allow me to stay home with Josiah (he's off this week for Easter) and allow Chris to go to work. This hospitalization has been incredibly difficult on all of us and this would give us a little reprieve. Please call Chris or me if this is something you would be able to do.
Thank you again for your continued prayers, emails, and words of encouragement.
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