It has really been several weeks of taking steps in the right direction - for which we are very thankful. Last night, Jen, Hannah & I went up for a visit. We were able to spend time playing with him in his crib. He loves to look in the mirror. We were even able to get a few smiles out of him! It was great to see him have fun like a little boy should. Today, however, he is not feeling so well. It seems he has developed an infection in his central line. It's being treated with antiobiotics. In addition, he has some sort of chest cold and congestion. The nurse decided to put him on oxygen because he had a bit labored breathing with all of the crud in his chest. He was scheduled for a biopsy this afternoon. The last biopsy showed some mild rejection - we'll see what this one shows.
The other area being watched is his wound. His incision continues to heal nicely. There is a great deal of fluid/stool coming out of the fistula on his abdomen. We are hoping that it heals into a nice new ostomy site.
There still is no timeline for R's departure from the PICU to the Ped's floor and then discharged to us. We fully understand that it will take time for his body to heal. We also truly believe that it will greatly help the healing process for him to come home with us. We look forward to the day when he joins our family in our house.
Thanks for praying with us.
Monday, August 25, 2008
Wednesday, August 20, 2008
Day 71
Please forgive us for the lack of updates on the blog. They might be less frequent than before, but please continue to pray for his healing. Our little buddy is still in the intensive care unit, but has made great strides the past few weeks. Here is an update...
- He remains off of the ventilator and is breathing very well.
- He has been off of dialysis since the last post - about two weeks now. He was on a diuretic medication (lasix) to help him pee. He did so well, they took him off and he continued to pee. This morning, they did start him on a small amount again because he had not done much the past 24 hours.
- Last week, he pulled out his central line. This was used to give him medications directly into the bloodstream. He was taken to surgery to replace it.
- A scope was performed two days ago. Overall, the doctor was pleased. He did say there were some signs of mild rejection, but feels steroids should take care of it.
- R has a nj-tube in - it runs through his nose to his bowel. Through the tube, doctors were able to feed him. Last evening, he decided to pull it out. We're not sure if he had had enough of it or didn't like the color of the tube - he doesn't seem to want to talk about it. Needless to say, since this tube is his lifeline, it is going back in today and the doctor has said that he needs to learn to leave it in.
- On the abdominal front, R's incision continues to heal nicely. The fistula (sp?) that developed in the middle of his incision is where his body has decided to put out the stool. It has been a challenge for the nurses to collect all of the stool and fluids coming out of the fistula, ostomy site, mucous fistula and g-tube site. Poor guy has a lot of drainage areas.
Despite all that is going on, R is alert and awake. We see flares of his personality coming through sometimes (i.e. pulling tubes out). He still has a long way to go, but we are so thankful that God has brought him this far. We enjoy all of the time we have with him, especially the few times we've been able to hold him. We look forward to continued healing and an increase in his mobility.
Thank you for your continued prayers!
- He remains off of the ventilator and is breathing very well.
- He has been off of dialysis since the last post - about two weeks now. He was on a diuretic medication (lasix) to help him pee. He did so well, they took him off and he continued to pee. This morning, they did start him on a small amount again because he had not done much the past 24 hours.
- Last week, he pulled out his central line. This was used to give him medications directly into the bloodstream. He was taken to surgery to replace it.
- A scope was performed two days ago. Overall, the doctor was pleased. He did say there were some signs of mild rejection, but feels steroids should take care of it.
- R has a nj-tube in - it runs through his nose to his bowel. Through the tube, doctors were able to feed him. Last evening, he decided to pull it out. We're not sure if he had had enough of it or didn't like the color of the tube - he doesn't seem to want to talk about it. Needless to say, since this tube is his lifeline, it is going back in today and the doctor has said that he needs to learn to leave it in.
- On the abdominal front, R's incision continues to heal nicely. The fistula (sp?) that developed in the middle of his incision is where his body has decided to put out the stool. It has been a challenge for the nurses to collect all of the stool and fluids coming out of the fistula, ostomy site, mucous fistula and g-tube site. Poor guy has a lot of drainage areas.
Despite all that is going on, R is alert and awake. We see flares of his personality coming through sometimes (i.e. pulling tubes out). He still has a long way to go, but we are so thankful that God has brought him this far. We enjoy all of the time we have with him, especially the few times we've been able to hold him. We look forward to continued healing and an increase in his mobility.
Thank you for your continued prayers!
Monday, August 11, 2008
Day 62
Sorry for the delay. We were away for a week taking a break. Here is the latest...
- A biopsy was performed last Thursday. The results came back with some mild rejection. Not good news, but the doctors were not surprised and prescribed some steroids. They seem to think it will take care of the problem. Another scope/biopsy is tentatively planned for Tuesday or Wednesday to see how things are going.
- R continues to be off of the ventilator. His respiration rate has slowed since the last time we saw him. He had been breathing like the ventilator - sometimes as many as 1.5 - 2 breaths per second. Now his rate is a little more normal. His lungs are getting stronger as time passes.
- As of today, R has been off of dialysis for 4 days. He is urinating more than he had been - above the minimal level set to keep him off of dialysis. His blood work also shows that his body (through the urine) is able to rid itself of waste products.
- His incision is healing very well. There is a pressure vacuum still attached that is greatly helping the healing process. He had a g tube that went into his stomach. He pulled that out over the weekend. Instead of putting the tube back in, they have opted to put a bag over it to collect any fluids that come out.
- During rounds today, a decision was made to have his arterial line pulled out of his leg. One less tube - yeah! If he does well today, they will take his catheter out tomorrow. Another reason to celebrate.
- R has been on a cardiac medication called amiodarone. The amount given has been decreasing, however, there is some question about switching from an IV dose to an oral dose. If you recall, the previous two times they've tried that, his heart has not responded well. A consult with cardiology is being set up.
As tubes disappear, R's mobility increases. We have been able to hold him over the past few days. We are looking forward to seeing if they will let us take him for short walks and do other things - as much as he will tolerate.
I hope that you are as excited as we are about the progress he is showing. There are still a number of areas of concern, but good news is such a breath of fresh air. Thank you for praying!
- A biopsy was performed last Thursday. The results came back with some mild rejection. Not good news, but the doctors were not surprised and prescribed some steroids. They seem to think it will take care of the problem. Another scope/biopsy is tentatively planned for Tuesday or Wednesday to see how things are going.
- R continues to be off of the ventilator. His respiration rate has slowed since the last time we saw him. He had been breathing like the ventilator - sometimes as many as 1.5 - 2 breaths per second. Now his rate is a little more normal. His lungs are getting stronger as time passes.
- As of today, R has been off of dialysis for 4 days. He is urinating more than he had been - above the minimal level set to keep him off of dialysis. His blood work also shows that his body (through the urine) is able to rid itself of waste products.
- His incision is healing very well. There is a pressure vacuum still attached that is greatly helping the healing process. He had a g tube that went into his stomach. He pulled that out over the weekend. Instead of putting the tube back in, they have opted to put a bag over it to collect any fluids that come out.
- During rounds today, a decision was made to have his arterial line pulled out of his leg. One less tube - yeah! If he does well today, they will take his catheter out tomorrow. Another reason to celebrate.
- R has been on a cardiac medication called amiodarone. The amount given has been decreasing, however, there is some question about switching from an IV dose to an oral dose. If you recall, the previous two times they've tried that, his heart has not responded well. A consult with cardiology is being set up.
As tubes disappear, R's mobility increases. We have been able to hold him over the past few days. We are looking forward to seeing if they will let us take him for short walks and do other things - as much as he will tolerate.
I hope that you are as excited as we are about the progress he is showing. There are still a number of areas of concern, but good news is such a breath of fresh air. Thank you for praying!
Friday, August 1, 2008
Day 59
R remains off of the ventilator and his saturation levels are at 100%. He is breathing rapidly and the doctors decided to give him a nasal canula with some high pressure air going through it - in hopes that his respiration rate will slow a bit. Big picture - he is still doing great.
They also removed his ng tube - meaning his face is now clear of any tubes, etc.
His vitals are good and the priorities (in no particular order) are...
- rest
- to start peeing
- no infection
As to the comment made on Day 57's post...Amen! If you have not read it, you need to - and consider it. We welcome your comments. We're thankful for your prayers. We're blessed to be in the midst of this process and desire for God to get the glory in all of it.
The next update on this blog will not be until Thursday, August 7.
They also removed his ng tube - meaning his face is now clear of any tubes, etc.
His vitals are good and the priorities (in no particular order) are...
- rest
- to start peeing
- no infection
As to the comment made on Day 57's post...Amen! If you have not read it, you need to - and consider it. We welcome your comments. We're thankful for your prayers. We're blessed to be in the midst of this process and desire for God to get the glory in all of it.
The next update on this blog will not be until Thursday, August 7.
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