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.
Saturday, March 31, 2012
Saturday, March 24, 2012
AT LEAST ANOTHER WEEK...
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.
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.
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.
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