I am very pleased to report the following...
- R has been moved out of ICU to the Pediatrics floor. He continues to be in good spirits and doing very well.
- UNMC has informed us that he is ready to be discharged from the hospital when two conditions are met: we are prepared to take him and handle his care and administration of meds and the state makes us the official foster care family for him.
- Jen and I were trained on his medications over the weekend on how to administer them and other concerns to be aware of while he is with us. We are hoping to make it in a few more times in the next week to learn a little more about his wound care and have the chance to administer some meds ourselves.
- We were told today that the state will make things final this Friday, allowing us to take him home next Monday, October 6.
- One bit of bad news...We learned today that R has been diagnosed with C-Diff. It is a spore that gets in to the system and is treated with antibiotics for about two weeks. It is very contagious. We are told this happens frequently when the immune system is suppressed, but the symptoms could be unenjoyable, to put it mildly.
We cannot tell you how excited we are to finally be at a point to receive him into our home. He just turned 16 months on September 27. We are so looking forward to working with him to help him in his recovery process. We are looking for grace from God to help us in this transition time and so that we can complete everything we need to do for his care.
Thank you for journeying with us. Next Monday represents an end to one season and the beginning of another. We hope that you will continue to journey with us.
Blessings!
Monday, September 29, 2008
Wednesday, September 24, 2008
Day 106
Read on for some WONDERFUL NEWS!
On the last post, I shared with you our focus for the week. Here are the results...
- R has been able to get plenty of rest and his body is responding very well to care.
- He is not on any oxygen.
- Feedings are going at the maximum amount for his weight. He did manage to pull the nj tube (goes in his nose, through his stomach and into his intestine) out again over the weekend, but all is well now.
- His lingering sinus/chest congestion seems to be all but gone. He has a few more days of antiobiotics left.
The fantastic news continues...the doctors have given orders for R to move out of the PICU to the Pediatric floor. They also have asked us to schedule some time to begin our training for his discharge - meaning that they will train us on how to care for him, give him medications, etc. I asked the Transplant Nurse Coordinator what things need to happen in order for him to be discharged. She went through the criteria of when transplant patients are released and R is beyond all of them, except for training of the caretakers. In short, we might be able to take him home in as short a time as 2 weeks!!!
Our focus for the next week is this...
- Jen & I can find some time to get up to the hospital together to get the training and fully understand all the care we need to give him.
- There would be minimal disruption in our children's lives for the next few weeks.
- That R continues to improve and is able to be discharged as quickly as possible.
On the last post, I shared with you our focus for the week. Here are the results...
- R has been able to get plenty of rest and his body is responding very well to care.
- He is not on any oxygen.
- Feedings are going at the maximum amount for his weight. He did manage to pull the nj tube (goes in his nose, through his stomach and into his intestine) out again over the weekend, but all is well now.
- His lingering sinus/chest congestion seems to be all but gone. He has a few more days of antiobiotics left.
The fantastic news continues...the doctors have given orders for R to move out of the PICU to the Pediatric floor. They also have asked us to schedule some time to begin our training for his discharge - meaning that they will train us on how to care for him, give him medications, etc. I asked the Transplant Nurse Coordinator what things need to happen in order for him to be discharged. She went through the criteria of when transplant patients are released and R is beyond all of them, except for training of the caretakers. In short, we might be able to take him home in as short a time as 2 weeks!!!
Our focus for the next week is this...
- Jen & I can find some time to get up to the hospital together to get the training and fully understand all the care we need to give him.
- There would be minimal disruption in our children's lives for the next few weeks.
- That R continues to improve and is able to be discharged as quickly as possible.
Wednesday, September 17, 2008
Day 99
Any concerns about what had been coming out of R's ostomy site and what would need to be done about it were all but put to rest this morning during rounds. Staff indicated that what had been coming out of his ostomy site was most likely (some medical term I cannot remember) and not the formula itself. In reviewing R's history, he had done this previously as the amount of formula he had been getting was being increased. Doctors will continue to monitor it (as they do everything else), but not much of a concern.
We were also informed today that play time is equally as important as his time to rest. OT, PT and Family Life departments are engaging him in activities throughout the week. We are attempting to get up to the hospital as much as we can to spend time playing with him also.
Our focus for the next week...
- that R would get the quality rest and enough activity that his body needs.
- that he will be able to come off of oxygen
- that the feedings would continue and increase to the amount his body weight needs
- that any lingering sinus/chest congestion would disappear
As I think about tomorrow (Day 100 since surgery), I can't help but wonder if we are one-half, one-third, or two-thirds the way through his recovery. I don't know, but we really want to get him home! On a personal note, our family is in the midst of a challenge balancing life (family time, kids activities, homeschooling and more) with getting up to spend time with R. A final request would be that the time we spend with him could be supernaturally multiplied - not for our benefit, but for his healing process.
Thank you for taking this journey with us.
We were also informed today that play time is equally as important as his time to rest. OT, PT and Family Life departments are engaging him in activities throughout the week. We are attempting to get up to the hospital as much as we can to spend time playing with him also.
Our focus for the next week...
- that R would get the quality rest and enough activity that his body needs.
- that he will be able to come off of oxygen
- that the feedings would continue and increase to the amount his body weight needs
- that any lingering sinus/chest congestion would disappear
As I think about tomorrow (Day 100 since surgery), I can't help but wonder if we are one-half, one-third, or two-thirds the way through his recovery. I don't know, but we really want to get him home! On a personal note, our family is in the midst of a challenge balancing life (family time, kids activities, homeschooling and more) with getting up to spend time with R. A final request would be that the time we spend with him could be supernaturally multiplied - not for our benefit, but for his healing process.
Thank you for taking this journey with us.
Tuesday, September 16, 2008
Day 98
For the past week, R has continued to rest and recover. For the most part, he is awake and alert and we are told that, when he is feeling well, helping him be active is best for him. For the past week, R has been on feedings for most of the time. A formula is given to him through his nj tube that feeds directly into his intestine. For the past 24 - 36 hours, doctors have been watching some discharge from his ostomy site. What had been "stool" looking was now looking more and more like the formula itself, raising suspicion that the feed might be coming right out.
Doctors plan to re-evaluate him on Wednesday morning. If the concern is confirmed, surgery might be needed to explore what is going on in there. This was disappointing news because R had been doing so well for the past several weeks. His incision from the last surgery just now healed completely. It will be too bad to have to re-open the wound.
We will update the blog when we know more. Thanks for praying.
Doctors plan to re-evaluate him on Wednesday morning. If the concern is confirmed, surgery might be needed to explore what is going on in there. This was disappointing news because R had been doing so well for the past several weeks. His incision from the last surgery just now healed completely. It will be too bad to have to re-open the wound.
We will update the blog when we know more. Thanks for praying.
Sunday, September 7, 2008
Day 89
R made wonderful progress this week. He is completely off of TPN and is up to 50cc's an hour of his formula! What a miracle. His intestines are tolerating the feeds, his output of fluids and urine is good, and his incision wound continues to heal nicely. What an amazing week. The drs. have said that if he had not been transplanted by now, he would probably have died.
He continues to be a testimony of God's mercy and healing. Afterall, Jesus is the same before, now, and forever. And HE has always been in the business of miracles. What an amazing blessing to walk this journey and see God work in so many people.
Thank you for your prayers. I feel in my heart that the intercession of prayer is so powerful. Please continue as you feel led. Physically, R is going to eventually have to endure another operation to fix his stoma sites and g-tube site. He is also receiving much physical and occupational therapy to help with the muscles that haven't been used in so long. He is developmentally, physically, and most likely emotionally delayed. But all this can come along with God working through the hospital staff, and HIS healing touch.
I would like to ask a special prayer, (if it feels right in your spirit) we would like to eventually adopt R. Would you ask for favor on us and for God to open doors? Also, it would be so fabulous to have R home at Christmas. I know God's timing and ours can be very different. I feel selfish even saying this, but I would love for him to have a Christmas out of a hospital setting.
Thank you friends.
j
He continues to be a testimony of God's mercy and healing. Afterall, Jesus is the same before, now, and forever. And HE has always been in the business of miracles. What an amazing blessing to walk this journey and see God work in so many people.
Thank you for your prayers. I feel in my heart that the intercession of prayer is so powerful. Please continue as you feel led. Physically, R is going to eventually have to endure another operation to fix his stoma sites and g-tube site. He is also receiving much physical and occupational therapy to help with the muscles that haven't been used in so long. He is developmentally, physically, and most likely emotionally delayed. But all this can come along with God working through the hospital staff, and HIS healing touch.
I would like to ask a special prayer, (if it feels right in your spirit) we would like to eventually adopt R. Would you ask for favor on us and for God to open doors? Also, it would be so fabulous to have R home at Christmas. I know God's timing and ours can be very different. I feel selfish even saying this, but I would love for him to have a Christmas out of a hospital setting.
Thank you friends.
j
Wednesday, September 3, 2008
Day 85
R continues to make progress. His feeds through his tube are increasing and the TPN or nourishment through his central line is decreasing! The goal is to stop the TPN completely and have the formula as his nutrition. He is also moving around more and has been very social. His smiles are contagious, his raspberries are hilarious, and he is proving that he knows what he likes and dislikes by shaking his head, "no, no, no" and kicking his foot towards the hands of the nurses! We love the time with him. We pray for continued healing physically. We have started to pray for him emotionally as well. As you know, he is a ward of the state and has a very complicated familial history. As he begins the journey toward physical wellness, his emotional journey also begins.
Through this entire journey, (since we are speaking of them) I have learned something so wonderful. It is to trust God through everything. I know... I know... this is such a cliche'. But when the going gets tough, you really find out how deep your convictions are. To be in the center of a crisis, or a painful situation, or something new, may be exactly where God wants you to be. For me, I want to always be in the center of God's will. Sometimes this puts me in places where I'm uncomfortable. But I trust HIM to use me and change me anyway that HE wants to so that I can glorify HIM. The phrase that God is more concerned about our character than our comfort is so true! There were and still are so many times of uncertainty, fear, frustration, etc. etc. At many of these moments in the beginning of this journey I would ask God, "Why?" I am learning to state more quickly now, "I trust You, Lord." "Use this time to change me for You." Look at your life. Ask yourself, am I in the center of God's will? Am I allowing the circumstances to mold me and shape me the way God wants me to be? I am convinced that in any circumstance, when one is open to the Holy Spirit comforming him/her closer to Christ, then he/she is in the center of God's will. If you are reading this and you want to know more about having a personal relationship with Jesus, please feel free to email me personally and I will share about the most rewarding relationship that you will ever know or have. HE is that amazing, and that worthy, and that REAL. This isn't a "religious" blurp. This is about life and death. R was very close to physical death. This is spiritual and eternal life and death.
Because many of you have followed this personal story for so long and have continued to support us and R, I wanted to use this as an opportunity to share with you God's incredible love and plan for all of us to be with HIM now on earth and then forever. God bless you and keep you.
With love,
j
jenbowes@cox.net
Through this entire journey, (since we are speaking of them) I have learned something so wonderful. It is to trust God through everything. I know... I know... this is such a cliche'. But when the going gets tough, you really find out how deep your convictions are. To be in the center of a crisis, or a painful situation, or something new, may be exactly where God wants you to be. For me, I want to always be in the center of God's will. Sometimes this puts me in places where I'm uncomfortable. But I trust HIM to use me and change me anyway that HE wants to so that I can glorify HIM. The phrase that God is more concerned about our character than our comfort is so true! There were and still are so many times of uncertainty, fear, frustration, etc. etc. At many of these moments in the beginning of this journey I would ask God, "Why?" I am learning to state more quickly now, "I trust You, Lord." "Use this time to change me for You." Look at your life. Ask yourself, am I in the center of God's will? Am I allowing the circumstances to mold me and shape me the way God wants me to be? I am convinced that in any circumstance, when one is open to the Holy Spirit comforming him/her closer to Christ, then he/she is in the center of God's will. If you are reading this and you want to know more about having a personal relationship with Jesus, please feel free to email me personally and I will share about the most rewarding relationship that you will ever know or have. HE is that amazing, and that worthy, and that REAL. This isn't a "religious" blurp. This is about life and death. R was very close to physical death. This is spiritual and eternal life and death.
Because many of you have followed this personal story for so long and have continued to support us and R, I wanted to use this as an opportunity to share with you God's incredible love and plan for all of us to be with HIM now on earth and then forever. God bless you and keep you.
With love,
j
jenbowes@cox.net
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