Day 179

It is Saturday evening. From our last post, we knew that surgery was coming for R. We learned on Wednesday that his surgery would take place on Friday (December 5). With that coming as quickly as it did, we asked the surgeon if we could take R home with us for about 24 hours or so, thinking it would be nice for him to spend some time out of the hospital. We, of course, wanted to spend some time with him. The hospital agreed and it was a wonderful time we had with him.

Surgery was scheduled for Friday morning. It took about 4 hours to complete. The plan was to fix the problem area - his fistula where most of his stool came out. They also planned to fix the area around his gj tube site and relocate his stoma. In short, there were three open wounds they would work on.

At the conclusion of the surgery, the surgeon came out and explained that everything had gone very well. She managed to fix the problem areas and, to our surprise, completed his take down. This means that rather than relocate his stoma, she connected it and put it back into his body. This is normally done about one year after transplant, but the surgeon felt he was ready to have it done now. The great news is he will no longer need a surgery in June for his take down. It's been completed!

As of Saturday evening, R remains in the PICU. We expect him to be there for some time. He will need several weeks to heal. If you recall, he had some significant challenges coming out of previous surgeries. We pray all goes well and the doctors and nurses will be an extension of God's healing touch to him. In addition, R has about a 5 inch incision running vertically on his abdominal area as well as another approximate 5 inch incision running horizontally. It is quite a site.

R has a big battle ahead of him. We will do our part and walk along side as he fights. Thank you for joining with us and praying.

Day 174 - Surgery Scheduled

It has been an eventful month.

R has been in the hospital three times since the first time we took him home. During the times we've had him home, he's been a joy to have as a part of our family. It has been challenging, very challenging at times. It has been a joy to see him be more active, laugh and engage our kids. The reason he has had to go back in is because of his skin. As his stool comes out, it is sitting on his skin, causing it to break down to the point where an appliance/bag cannot sit on it to collect it.

Currently, he sits in the hospital awaiting surgery. The doctor told us when they discharged R for the first time that he would have to come back in for surgery. Because of all that he had went through, they had hoped to do it in the spring - giving him time to recover from being in the hospital for so long and more time to get stronger. Because his skin continues to break down to the point where he has to stay in the hospital, they decided today that they will schedule the surgery as soon as possible.

There is some significant risk to this surgery. The concern is for how he will do during the recovery. We can only pray. Our hope is for a successful surgery and a quick recovery. After that, we would be able to take him home until his next (and hopeful last) surgery - his take down next June.

Surgery is tentatively scheduled for next Monday. Doctors hope to be able to get him in this week. We are praying for a successful surgery and that his recovery goes as smoothly as possible. While we are disappointed we do not get to have him home during the holiday season, we recognize the need for his surgery and look forward to having him home as soon as possible.

Thank you for praying with us. We will update you when we know more about his surgery.

Day 143 - Home At Last

As the date for R's discharge was getting closer, there was the stark realization that our work truly was only beginning. And last night, begin it did...

We learned early in the day on Thursday that we would be taking him home. We were excited. He looked good and we felt ready. There seemed to be a flurry of activity and people around us during the day, all indicating how much support we would have in taking him home. It was a great feeling knowing that all these people were behind us. We felt up to the task and R was ready to go.

We got home Thursday night and began preparing all of his medicines and putting away supplies. He fell asleep about 8 pm Thursday night and we finished getting the house in order. Jen slept in a bed upstairs in R's bedroom. As it was a family affair, the girls slept on the floor in R's bedroom (as a show of solidarity I suppose) and Nathan slept in bed next to me. Most certainly, I got the short end of the stick.

I had a baby monitor next to my ear. Do you know that feeling the first night you take a baby home? With every noise, my eyes popped open. Was that him? Did he pull his tube out? Is he leaking stool all over the crib? I set my alarm at 3:55 am to get up and put more formula in his feeds. I saw a note from Jen that she filled it at 3:30 am. I went to bed thinking I may get a full night's sleep on the first night, but not so fast. Jen came down at 4 am and asked me to relieve her. He had been up for 2 hours. I jumped to the occasion, ready to go. 4 am turned to 4:30, then to 5 am, 5:30 am, 6 am. Are you kidding me? He seemed to be tiring. Perhaps it was the 5 am addition of whatever the awful show was on the Disney Channel. At 6 am, I put him to bed. He fussed, but I was determined. I put his pacifier in and I laid down. For the next 30 minutes, I would get about 2 minutes of rest for every 1 minute of putting his pacifier back in and holding it in place until I felt it safe to lay down. The only words in my conscious were "Jesus please" and "Mercy". Any dads out there? Can I get an Amen?

He finally fell asleep at 6:45 am. Great I thought. He woke up at 7:00 am. Ugh. He seemed content in the crib, so I left him there. Jen eventually came in at 7:20 am and we began to get ready for the day as a home health nurse was arriving at 8 am.

Today has been a great day. The kids have been playing with him and talking to him all day. He follows them with his eyes wherever they go. It will be an adjustment for all of us, but especially him. Remember, he's been in a hospital bed all of his life. Sitting on the deck, going for a walk, feeling the breeze hit your face, riding in a car - all new experiences for him. We're excited to have him finally home. I think we'll go for a walk now.

Thanks for taking this journey with us. I can't wait to show him to you.

Day 141

Friends,

It has been a very long few weeks. We have waited patiently, sometimes with great anticipation for the day that R would be released from the hospital into our care. Several times over the past few weeks, we were prepared to take him home, only to show up and have our hopes dashed because something was wrong or not ready.

As of today, R is doing very well. He has good strength, he is tolerating his feeds very well and all of his lab results look great. The doctors confirmed today that we can take him home tomorrow!

As our family has prepared for R to come home, we realize that our work is only beginning. He is so worth it. So many of you have lifted him and our family up in prayer over the past several months. We cannot thank you enough for that! It has been a long road and we thank you for walking it with us.

A few requests for the next 24 hours and beyond...

- That he continues to do well with his recovery.

- That R would not pull out his nj tube. When he is out of restraints, he can pull it out in a matter of seconds. We will need to watch him closely.

- That the transition for all of us from hospital to home would go as smoothly as possible.

His Grace is sufficient for us. Thank you for your prayers.

Day 111

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!

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.

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.

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.

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

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

Day 76

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.

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!

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!

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.

Day 57

No more vent!

Around 9:00 am, doctors took him off of the ventilator and there were no complications. I was in to see him at 11:00 am when the doctors came around on rounds. They are very pleased with how he looks and his response to coming off of the vent. It was great to see his face without this big tube obstructing the view and going down his throat. R was awake and responsive. He had been awake and free from medicine for quite some time, so he was pretty tired from the morning's activities. The nurse was going to give him some medication that would cause some sleepiness, so I did not stay long.

They hope to remove his ng tube tomorrow. It runs through his nose to his stomach. If they do, then his whole head and face would be tube free!

The next major milestone will be coming off of dialysis. This will happen only when he pees on a regular basis. As always, there remains a risk of infection.

We are so thankful for the great news today! We hope you are as encouraged as we are and will continue to pray through these other challenges he faces, altogether knowing God is in control and creating a magnificent testimony for His glory.

Day 56

Great news today! We were told that if R has a good night tonight, they are likely to extubate him in the morning. No more ventilator! If he is off the ventilator, it would also mean no more IV drips of versed and fentanyl - medications used for sedation and pain killers.

While we're optimistic, he still could have a setback, but as of this evening at 9:40 pm, all is well.

We'll be excited to update the blog tomorrow and let you know. As for prayer requests...

- that all goes well with coming off the ventilator

- that he will start to pee enough to come off of dialysis

- that his body will continue to get stronger even though there are some significant changes coming tomorrow

Thanks for praying! Blessings!

Day 55

R looks great! Rounds were brief today as the doctor said he looks great and hopes that the ventilator can be taken off on Wednesday. That was great news.

A wound nurse was working on R's wounds this morning. All of the bandaging was off and it was amazing to see the large incision (not closed all the way) with a portion of his intestine exposed; his ostomy site (pink as can be); his old ostomy site and the previous location of his g tube (waiting to heal). Each of these four sites has a bag attached to it that collects any stool or other fluids that manage to make their way out. If you recall, the portion of the exposed intestine is what was scheduled to be repaired in surgery a week ago last Saturday. The nurse explained that it is beginning to heal and will (hopefully) end up being another location for stool to be collected. The concern is if it does not heal (so far so good) or if stool leaks into his belly (has not happened yet).

A continued area of concern is his kidneys. R is peeing more, but not at the volume they would like to see. We are believing it will just take a little more time.

We are thankful for the progress he has made over the past 9 days. The rest has done him a great deal of good.

Join us and believe in faith that God will continue to do an amazing work in his little body - even to the amazement of the doctors and nurses that care for him. All a testimony to God's glory.

Day 52

I was able to be at rounds this morning for the first time all week. Our other 3 kids are taking swimming lessons in the mornings and having a great time! I was extremely pleased when I walked in and saw how beautiful R's blood pressure and heart rate were. The nurse on duty said he has been doing great all morning and he even had 20cc's of urine output! Not a lot, but enough to smile about.

Tim and I returned later in the afternoon and saw that he again was resting very comfortably and his vitals looked great. The nurse told us that this was probably his best day yet. I know that most of you cannot imagine what his belly looks like, but it is even crazier now. He has 4 ostomy bags on his gut. These are plastic appliances that adhere to the skin and collect stool. Well, remember when he kept pulling his g-tube out? It will not stay in now, so they have a bag covering the site. Then the new and old stoma's (part of the intestine) have a bag, and lastly there is an area on his incision that is leaking stool. And this area has a bag. The nurses work so hard to keep him clean and comfortable. They are the best.

The doctors are hoping that the area leaking stool will eventually heal on its own. They do not want to go in surgically, as it may cause more damage than good. The prognosis is that it may take months for it to heal on its own. We pray that our Healer will speed up the process and continue to keep his body free from infection as it heals.

We thank God for this day, as He is the only One who is in charge. It is so wonderful to watch His goodness. We have learned to give R to the Lord, and now the surgeons are leaving it to Him also by not operating again at this time. What an amazing testimony of God's hand. Sometimes life's circumstances cause us to have no control just so we can watch and witness the One who Truly IS.

God Bless you all. God is good...all the time.

Day 50

Jen & I cannot thank everyone enough for your prayers for Robert - and us. I know that God has sustained R and us over the past 50+ days of this journey. I'm sure you have noticed that the frequency of our updates has diminished the past week or so. I don't know that I ever imagined how much energy this would take out of us. We sometimes feel weak, but know that the Lord will show Himself faithful and strong in the midst of our weakness. Lastly, we plan to take a break from August 1 -7. We'll be taking some time as a family to get away and recharge.

On to the little man...

For the past few days, R has remained relatively stable. He has an occasional leap of heart rate or blood pressure, but a quick drink of something in his IV usually fixes it. Issues with his heart seem better - not nearly the irregularities that have been present in the past. His lungs seem to be doing very well. Even today during rounds, there was some discussion of taking him off of the ventilator, when the rest of his body is ready. His kidneys continue to be on vacation. Again, doctors say they will start when they are ready. We hope it is soon.

The biggest area of concern is his gut. He has a perforation in his bowel. The normal remedy would be surgery, however, because he is so fragile in there, the doctors fear that any surgery might do more damage than good. There is pressure in R's gut that is pushing the stool out of his intestine and through the incision that was made for his surgery. This sounds rather gross and looks even worse, but the doctor is pleased that the body is getting it out, one way or another. As long as he can stay stable and infection free, they will be pleased and see if the body can remedy the problem on it's own.

Thank you for continuing to pray with us. Each day that goes by, our anticipation grows for the days that are coming where he makes great strides toward a full recovery!

Day 48 - Part II

I arrived at the hospital about 10 minutes before they took R down for surgery. The nurse told me that she noticed stool coming from the middle of his incision around 3:00 in the morning - a clear sign of a perforation. Over the next few hours, staff prepared to take him down to fix the perforation. They eventually brought him down to the operating room around 6:45 am.


Around 8:00 this morning, the surgeon came out and told us that they had changed his central line, but did not go through with the surgery. She felt that there was a greater risk for causing more damage to his fragile bowel than the benefit of trying to fix the perforation. She said a surgical procedure could produce a lot more perforations in the bowel, causing it to almost crumble. She said at this point, we are going to let the body try to heal itself. We are told this could take weeks or months to happen. They will continue to watch him closely and, if necessary, have the surgery.


Keep in mind that the surgeon is one of the few in the world that performs these types of procedures. While R is in a very fragile state right now, I am reminded that now he really is in the hands of the Lord. My prayer focus for the next few days will be this...

Lord, let Your will be done in his life. He truly is in Your hands. Whether You take him home or heal him, it is my desire for You to get the glory in all of this. I am your vessel to be used as you see fit. Whatever the outcome, it will be well my soul.

Blessings!

Day 48

We received a call around 5:00 am Monday morning that R had a perforation in his bowel and he is going in this morning for emergency surgery.

On Sunday, Jen & I spent a few hours with him and he did not seem to be his normal self. We had a feeling that something was not right. While I am anxious about another surgery, I am thankful that the problem has been found and hopefully can be corrected.

This has been a long journey - for R, for us and for you. Thank you for your faithfulness in checking the blog for updates on his progress. We heard a good word yesterday on prayer and perseverance. Are we going to pray everyday for R even though we don't know the outcome or how long the journey will last? Thank you for your faithful prayers. If you don't do so already, I would encourage you to take some time during your prayer time to listen to the Lord.

Blessings!

Day 47 - Part I

We don't have any details now, other than R made it through surgery and was able to rest well over the course of the night. He received quite a bit of fluid that they are working now to take off of him. We will update this later on in the day.

Thank you for praying.

Day 46

R has been struggling the past few days. He has not been able to process anything that goes into his stomach. It usually drains out his ng tube (through the nose). Another concern is that he has been vomiting the past few days. Today, the doctors noticed some redness around his incision site. They decided to send him down for a CT scan. While I don't know the specific results, we are told that he will be going in for surgery around midnight tonight.

We will update when we hear the results. Thank you for your continued prayers.

Day 44

Our apologies for the lack of updates over the past few days. Life happens.

The challenging part about giving updates on R is that he can make progress for a day or two or a week, but have a bad hour and then be back to square one. What's even more challenging is when you can't give a good explanation as to why a setback occurs. As for today, we're thankful that he's still with us. I am reminded as I write that he is still fragile, not nearly out of the woods.

He remains in intensive care on a ventilator, several medications and dialysis. New news of the day is that he's got a bladder infection. Hopefully the antibiotics can clear it up quickly. We were told that he threw up for a few hours this evening. For some reason, his stomach just wasn't tolerating much in it. The nurse ended up putting in an ng tube (through his nose into his stomach) to help relieve some of the pressure.

We continue to pray for his kidneys to start working, his lungs to get stronger and his heart rate to remain stable. We are also praying for the bladder infection to go away quickly. Thank you for continuing to pray with us.

Day 40

Jen & I had the opportunity to spend a few hours with R this afternoon. The past week had shown a great deal of progress and improvement, but today was a reminder that he still is a very sick boy.

We were enjoying our time in the room with R when, during a breathing treatment, his heart rate suddenly shot up to 220 beats per minute. Soon after, his blood pressure began to fall. There was no obvious reason for this to be happening, but the staff (God bless them all) went to work. Within a few minutes, the room began to fill with people - the nurse, respiratory therapist, resident, fellow (on the phone), lead nurse, someone charting all that was going on, EKG technician, x-ray technician, surgery transplant liaison and attending physician - Dr. Grant (she is awesome) all working, diagnosing and praying (Jen & I did the last part). For the next 15 - 20 minutes, R's heart rate continued to be well over 200+ beats per minute and his blood pressure struggled to stay above 60's/40's. During this time, R stayed awake, alert, responsive and pink - obviously all good signs.

After about 30 minutes, some fluids and medication, R began to stabilize and the attending explained to us that all of the excitement was attributed to a combination of factors: an albuterol treatment for breathing, perhaps a bit dehydrated and low levels of amiodarone (which keeps his heart rate in check).

Keep in mind that just prior to this 30 minutes of excitement, Jen & I had been having a nice quiet time in the room. As the commotion began, we held our ground in the corner of the room with a look of "what in the world is going on" on our faces. The nurse was good to encourage us a few times during this ordeal that all was under control and not to get too worried. I am quite certain that our "deer in the headlights" look on our face (with a mask on no less) told her that we were beyond worried. After everything calmed down at 4 pm, R had stabilized, most people had left and Jen & I were ready for another valium prescription and, once again, we didn't get one.

On a serious note, we are thankful for all of the progress R has shown for the past week. Today is not a setback, just a reminder of how fragile he is. His biggest challenge right now is his kidneys. It is difficult to balance his fluids when his kidneys do not work and he is on dialysis. He will spend the night off of dialysis, so we are going to pray tonight for his kidneys to begin working and pee!

Thank you for joining with us this evening and praying for him. We will update you tomorrow.

Day 38

R has had a very good week. The settings on his ventilator are very low and they are doing sprints with him now. This is when they turn the machine's work down to 0 for an hour and give him the opportunity to do all of the work. This will hopefully strengthen his respiratory system for the day that they decide to take him off the ventilator. Some of the doctors talked about taking him off on Sunday. We will see as the weekend progresses.

Another new area for us is his feedings. They have hooked him up to a slow drip of a low fat/high protein substance that goes into his stomach. He tolerated this extremely well for 24 hours so they increased the dosage. At 7:00pm tonight, he became sick and vomited. The formula was also draining from his g tube. They are going to stop the feeding line until 10:00pm tonight and then resume at the lower dosage. This is brand new stuff for his body, so we are thrilled that he has tolerated any of the feeds.

Did you ever think a group of people would be cheering for someone to pee? At rounds today when the nurse told the group of transplant doctors and nurses that he had a wet diaper, everyone was excited. Even though R wet a little last night, it was not enough for the doctor to be satisfied. She wants to see more output, so they are continuing the dialysis machine for 12 hours on and then 12 hours off.

R has his little hands in restraints now. The nurses are amazed at how quickly he can go for one of his lines and tug. Our favorite nurse was laughing today saying that he is so used to hospital life that he knows exactly how to maneuver his fingers and hands to rip off tape and try to get the lines off of him and out of his nose. It was great to see him so awake, yet I am so looking forward to the day that he is free from the ventilator and all of these tubes. What a blessing it will be for R to be able to play with toys and be able to move around on his own! We give God the praise for all He has done in R's body and all He will do. R is nothing short of many miracles. Thank you for your prayers.

Day 36

R is making some great strides. Here is the news of the day...

He had been off of dialysis for 24 hours and did very well - no complications. As he can tolerate it, the doctors plan is to alternate on/off of dialysis until his kidneys start working. This could be a few hours or a few weeks - it all depends on him.

R is having his blood gas checked every six hours. Every result has shown improvement. The settings on his ventilator are as low as they can get. He is doing most, if not all of the work.

He continues to have his g tube clamped all the time and ng tube clamped for periods of time to see how his stomach and intestines tolerate things going through them. So far so good. There is a great deal more output in his ostomy bag, indicating things are making their way through his little system.

We also heard the results of the biopsy on the section of his bowel that was removed during last Saturday's surgery. The results were negative - meaning the body is not rejecting the organ!

A tube that was in his abdominal area to drain fluids from the surgery has been removed.

The last news of the day is that he is starting to be weaned on his medications for pain and sedation. The process started last night and as long as he does well, they will continue to bring those medications down.

It seems as though he has turned the corner, but we will continue to pray. Most importantly right now, his kidneys need to start working so he can pee!

Day 35

R continues to improve! He was taken off of dialysis today at 1:30 and so far his vitals still look really good. He has not urinated as of 10:35pm, but the nurse said that it may take him several days. The team will evaluate him again tomorrow morning about when and how often to put him on dialysis.

R's ventilator settings continue to be dropped as well. He is breathing much more on his own with the machine doing only a little of the work.

He is tolerating his ng and g tubes (to the stomach) being clamped for longer periods than yesterday and his output in his ostomy was the best it had been since the transplant! (This means that fluid is moving through his intestines.)

We still have not heard the reports from the pathology lab, but will be asking about that tomorrow morning.

The kids and I were able to attend a meeting about g-tube feedings and the typical course a child who has received this type of transplant will go through when learning to take in nutrition orally. It was very good information for all of us. The kids learned that they will have a very important role. R will probably want to put food in his mouth when he sees them eating. She called that "positive peer pressure." The nurse giving the lecture also said that siblings are perhaps the biggest influence on positive oral experiences (eating by mouth) for these transplant babies.

Although this is some time away, it was exciting to talk about it with the kids and imagine what it will be like when R comes home.

I don't want to get ahead of things here. R still needs his lungs to heal completely, his kidneys to function, and his vitals to remain stable. We continue to pray that his new liver and bowel work perfectly and for God to continue the healing process in his other organs. Thank you for your continued prayers.

Day 34

R looks so wonderful today. All his vitals are looking great. His gas scores are so good that they are taking them once every 8 hours. It used to be every two. While I was there today, he opened his eyes, moved his arms and legs, and tried to pull at his lines with his fingers! This is all so exciting to us. We have not seen him awake and moving around since we handed him off to the nurse for his transplant surgery on June 2. We thank God for touching his body!!

R continues to be on the ventilator and dialysis. They are starting to wean some of his pain medicines. He is also being weaned from his sedatives. This is allowing him to wake up for a few minutes at a time.

The doctor's told Tim this morning that the piece of intestine that they removed on Saturday during surgery will be examined by the lab to see if R's body is rejecting it. We pray for the precious organs to work and work miraculously well. Also, R's kidneys need to start working. They probably will not take him off the ventilator until his kidneys show signs that they are starting again. Pray for him to pee! :)

They are also starting the process of clamping his tubes to his stomach in hopes that his stomach will tolerate having fluids in it. This is the first step towards feedings. We pray that he tolerates this process well and can begin receiving feedings soon!

We continue to be amazed at God's precious little boy. We continue to stand amazed of our Sovereign God. This has been and still is a difficult journey. There are times of sorrow and set backs and times of healing and rejoicing. However, R is worth every moment of it. I am so excited about the past two days. R is looking like himself again, and he is doing some of the same movements that he did prior to the transplant. We love him so much. Thank you for loving him with us. I pray that your time talking with the Lord on R's behalf has blessed you and your relationship with your Father God. God bless you.

Day 33

After a very busy last few days, it was a relief for everyone to have a quiet day. R was switched to the conventional ventilator today. As of this evening, he continues to do well with relatively low settings. He has been on two medications to make sure his blood pressure stays up. One of those medications has been cut by half throughout the day and his pressures have done well.

The primary goal for today was rest. That will continue through the night. I will be curious to see what the doctors will order after rounds tomorrow.

During her visit this afternoon, Jen was there when R woke up. She was excited to be able to talk to him for a few minutes and let him hold her finger. He still is medicated quite a bit, but it was good to see him open his eyes and move his arms around a bit.

Thank you for your continued prayers. We will be praying for his kidneys to begin to work and that he can be weaned from the ventilator.

Day 32

I received a call at 8:40 this morning from R's nurse. She told me that they were sending him to the OR for surgery. I arrived in his room at 9:00 am. He had not left yet. The nurse showed me quite a bit of fluid that had leaked out of his gut and run down his side and even on to the floor. There was a perforation that caused the fluid to mass in his gut. Eventually, the pressure became so great that it forced it's way out. He was a mess and did not look very good.

A few hours later, the surgeon told us he was able to repair two large perforations in the bowel. He also removed a segment of the bowel because it did not look healthy. After a washing, they sewed him up and back up to the room he went. His vitals were stable throughout the surgery. The doctor said he is hoping that this will address some of the up and down issues R has been having the past few days.

As of this evening, R is stable. They are checking his blood gas levels on a regular basis and are weaning him on the vent and trying to pull as much fluid as they can out of him (a lot had been given to him during surgery). The goal for the remainder of the weekend is rest.
Thank you for your continued prayers.

Day 31

In light of yesterday's events, the goal for today was rest and peace and that is just what happened. The doctors this morning decided to switch R from the conventional ventilator to the oscillating ventilator. Not necessarily a step backward, according to the doctor, but a step sideways. R had not been able to blow off as much CO2 as he needed to, so the doctor decided to make the switch. The oscillating vent should be able to assist his little body in getting back to where he was a few days back. In addition to the vent change, they changed the medication they had been giving him to keep his pressure up. In doing so, they hope to get out of this "cycle" that R seems to be in with his fluids and his pressure.

As of this evening, everything is stable and he is resting comfortably. We are hoping for a quiet weekend with minor adjustments to the oscillator. If all goes well, they may try to switch him back to the conventional ventilator on Monday.

In light of all of the events from yesterday, I did not share something on yesterday's post. When you see R, it is easy to get caught up with all of the machines around him or the monitor that displays his vitals. Even when you look at him, you see his surgical site, ostomy site, drainage tube from his belly, IV lines going in his chest and leg and more. It is easy to get lost and forget about him as a baby boy. Prior to all of the chaos yesterday, Jen & I were bedside, the lights were off and it was quiet. We looked down and saw a single tear coming from his eye.

Thank you for praying for R.

Day 30

At the end of rounds today, the doctor said she was pleased with the progress R was making. And then things went haywire...

The only concern the doctors had was with a high white blood cell count. They suspected something was going on internally, and opted to send him down for a CT scan. Jen & I decided to stay through the CT scan so we knew the outcome. As a part of preparing for the scan, the nurse administered a contrast - a fluid designed to go into his gut to help give better pictures. Administering the contrast took about an hour. With about 30 minutes left, Jen & I decided to get a quick bite to eat. On the way back from lunch, we were passed by a nurse practitioner we knew running down the hall. Thinking it was a bit odd, we rounded the corner by R's room to hear alarms going off and an entire team of people standing around his bed working feverishly. I cannot tell you what a blow that was.

We took a quick peak in the room at him. He was blue. We could hear them speaking out his oxygen saturation levels - it had dropped below 40%. It should be at 100%. Soon more people came around the corner to help. I can't tell you how many people were inside and outside of the room working on him and providing support. If I actually took the time to think about it, I would have to say it was an amazing sight. Again, I can't say enough about the team of people that care for him. Within a few minutes, they had brought his oxygen saturation level back up to a decent level and they made a quick decision to get him to the OR to see what was going on.

Jen and I were a bit shell shocked. The staff were good to give us an explanation of what was going on, but they really did not know why he crashed like he did. We were just thankful that he made it.

The surgery did not take long. They call it a "wash out". He is opened up and they literally wash out his insides to make sure there is no leaking, no perforations or anything out of the norm. While they did not find any blatant problems like they did on Sunday night, they were able to relieve a great deal of pressure internally. The nurse explained to us that it might have been compartment syndrome - a situation where there is a dangerous amount of pressure internally. Needless to say, we were relieved that he made it and that he appeared to be much more stable than he was a few hours ago.

Prior to getting him settled, the doctor ordered a bronchoscopy. They wanted to take a look in his lungs and give them a "wash out" as well. The wash out can be done through the device inserted through his breathing tube. The danger is that when inserting the saline, oxygen levels can drop dangerously low. In some cases, the patient crashes and they have to administer CPR.

As they prepared for the bronchoscopy, a crash cart was brought outside the room and "code" procedures were put on the counter as a precautionary measure. By this time, I think Jen & I were both ready to ask for a valium prescription and call it a day. Jen & I actually got to watch the bronchoscopy and see R's little lungs working. It was amazing to see the camera go through the breathing tube and into his lungs. We even saw where the lungs branch into each lobe. The doctor flushed some saline solution into his lungs and then quickly sucked it all up. This was done a few times. Each time, R's oxygen levels dropped, but he quickly recovered each time. Whew!

Words cannot express all that happened today. We almost lost him. Today was a reminder of just how sick and fragile he is. We will chose to believe that today is one more day in what will be an amazing testimony.

Prior to all of the days events, a mom of another transplant patient on the floor was beaming. She had just taken her precious little one year old out on a walk - for the third time ever. As of today, R has been alive for 402 days. He has been in the hospital for about all but 2 weeks or so. Jen & I can't wait until we can take him for a walk.

Day 29

R continues to do well with his recovery. Here is the latest news on a number of fronts...

He continues to do well with his new ventilator. The settings on the vent will change over the course of the day. Lately, they seem to be making changes in a positive direction. This would indicate his lungs are getting stronger and he is able to breathe more on his own without assistance from the vent. There are plans to take his chest tube out today - another good sign.

As of late Tuesday evening, R was taken off of the IV medication for his heart (amiodarone) and moved to an oral dose. So far so good. If you recall, he did not tolerate this well the last time it was tried. This would be a focus of prayer for the next 24 hours.

When Jen & I went in for rounds this morning, R was not on dialysis. My excitement was short lived as he was scheduled to go back on it today. His kidneys are not working. The doctors say that they will begin working when they are ready. Perhaps they will begin working as he gets stronger and further along in his recovery. Again, another prayer emphasis for the next few days.

R's surgical site still had some oozing (medical term) blood today. The doctor ordered some platelets, thinking that should solve the problem.

R is now about 36 (or so) hours off of the paralytic drug. As I mentioned yesterday, he is more aware of his surroundings and responds to stimulus. We were told not to make too much noise today so he could get some rest. Jen and the nurse were able to give R a bath in his bed today. His blood pressure would climb as they moved him around - a sign that he is responding to what is going on. Because of all that he has gone through recently, we fully understand the importance of R getting all of the rest he can get.

Thank you for your continued prayers!

Day 28

Today we are four weeks post transplant. Once again, every day we have with R is a blessing.

He has made some remarkable strides the past several days and continues to do so today. Today, he continued to show improvements with his blood gas values. With each test (about every four hours), they will adjust the settings on the ventilator. He currently gets about 36% oxygen from the ventilator - room air is about 26%. From the settings on the ventilator, we can see that he is also breathing more on his own. The other big change of the day is that the doctors took him off of the paralytic drug. It may take a day or two for it to work itself out of his system, but once it does, he should be a little more alert and aware of his surroundings.

R continues to be on some strong antibiotics. We are hoping that his recent surgery will be his last and that no infection sets in. He continues to be on dialysis and amiodarone - the cardiac drug. There was no word today about changes to either of those. That's alright with us - slow and steady progress. No more emergency surgeries!

We are excited about his progress and the great news today! We are giving thanks for the progress he has made and, in faith, giving thanks for the progress he has yet to make. Thank you for praying with us.

Day 27

While at church yesterday, we received a message that R had been switched from the oscillating ventilator to a conventional ventilator. The doctors had felt that he had made enough progress over the past few days to make the switch. Throughout the day Sunday, R's blood gas scores continued to get better. This was a major milestone! As of Monday morning, he remains on the ventilator and adjustments are made as needed after blood draws every four hours.

I woke up this morning and had a voicemail from the hospital. The staff determined that there had been a perforation in his small bowel and R had to have emergency surgery about 1:30 am Monday morning. The doctor said this morning during rounds that they were able to repair the problem and cleaned out the leakage. The downside is that his poor body had to endure another surgery and there is a risk of infection anytime surgery is performed. There is added risk since they had to remove waste that had leaked out of his bowel. The upside is that they were able to correct the tear in his bowel. They were also able to close his incision completely. Previously, his incision remained open with a vacuum (for lack of better words) that promoted drainage and healing of the tissues. The last bit of good news is that now fluids (nutrients, etc.) are making their way along the digestive tract and his bowel is being put to work. We are hoping that, despite the surgery, his bowel and liver and kidneys can begin to function - and function well.

So, R continues to hold our attention. In the past 24 hours, we've gone from elation over his progress with the vent changes to "what is going on here" with the surgery and then back to cautious optimism that he will recover well from the latest surgery and get back on track to making improvements. Quite the rollercoaster for us, but I am continuously reminded how it must be for R. His little body continues to fight. We will continue to fight with him.

Thanks for journeying with us.

Day 24

Jen & I made it up for rounds this morning. The doctors were pleased to see that R had another good night and continued to make slow progress. They decided not to scope him this afternoon, fearing that the risk for complications outweighed the benefit of what would be accomplished with the scope.

R has been on a heart rate medication called amiodarone. If you recall, some time back he was weaned from an IV drip to an oral dose only to have a strong negative reaction to it. Today, the cardiology team cut the rate of amiodarone (via IV drip) by 1/2. If all goes well over the weekend, they are going to meet and discuss options for continuing to wean him off of this medication. His heart rate and blood pressure have been stable for three days now. No arrhythmia's or other complications.

On another good note, R continues to have his ventilation settings slowly adjusted lower. This means his lungs are very slowly getting stronger. If R continues to do well, the doctors will put him on the other ventilator on Sunday or Monday. If the switch is made and R can tolerate it well, this would be a wonderful sign of progress. On the other ventilator, R can eventually be brought off of the medication that keeps him paralyzed and sedated. He would be more aware of what was going on around him and we would be able to hold him. We are cautiously optimistic - and very excited!

The bandaging that covers R's surgical site - his incision and old ostomy site - were changed today. This is the first chance in a week or so that we've been able to see how the site looks. His old ostomy site is healing nicely. The incision from the surgery also looked good. They still have not closed the wound entirely due to the pressure it would cause in his little body.

We will have a chance on Saturday to bring the kids up for a visit. The last time they saw R was three weeks ago last Wednesday - the day after his transplant. We are looking forward to being up there as a family. The kids have been remarkable the past few weeks. This has been a lot for them to process and understand. I would ask that you keep them in your prayers as well.

Thank you for taking this journey with us. Your prayers are greatly appreciated! Blessings!

Day 23

We have been very pleased the past few days with how things are going. R continues to be very sick, however, he has had three good days with no incidents and plenty of rest. The settings on his oscillating ventilator have slowly been lowered. The surgeon is planning to do a scope on his bowel tomorrow afternoon. The scope will show what the inside of the bowel looks like as well as take a small sample to see how the tissue is doing.

The last time the scope was done (2 weeks ago), R did not react well to it. We are hoping that the results of the scope are positive and that he will tolerate it well.

The para-influenza virus in R's lungs continues to be a concern. Jen & I both feel that if he can only shake that, he would begin to make some significant process. We know that it is in God's timing...

Thank you for your prayers. We will update you after rounds and the scope tomorrow.

Day 21 - II

As I surfed this evening, this certainly hit home....

http://www.foxnews.com/story/0,2933,370941,00.html

Day 21

R has made it three weeks since transplant! We are thankful for each passing day!

I was at the hospital for a few hours this afternoon. The chest tube that was put in on Sunday is still there and, as of this afternoon, the pneumothorax in his chest is gone! Because the ventilator he is on puts out some higher pressure, there is a chance it can return, however, we are excited that it is gone. That has been the culprit of varying vitals the past few days. The chest tube is likely to stay in for some time while R's lungs are weak and he is vulnerable to getting more of these.

Also done today was an echocardiogram. While I did not speak directly to the cardiologists, it appeared that there were no problems with what was seen.

R continues to have an influenza virus in his lungs. This is the greatest cause for concern at this time. It is halting any attempts at making progress. For the last 2 days, doctors have really done nothing but work to manage his vitals and let him rest.

Jen gave you a great list of prayer requests for his little body. I would move the influenza issue to the top of the list. My sense is that if he can shake this virus, avoid any more pneumothorax's and his lungs get stronger, he may be able to turn the corner and start making some significant process. Until then, we will walk in faith and trust in God for R's needs at this time.

Thank you all for your continued prayers.

Day 19

We called into the nurse's station this morning before church. The nurse was not available to talk to us because she and the surgeon were busy in R's room working on him. The surgeon had to put in a chest tube to drain an air pocket that formed around the lower lobe of his right lung.

Tim and I stayed at church until the announcements were over and then went straight to the hospital. While we were there, the surgeon returned because the chest tube was not working. R's blood pressure was critically low, his oxygen saturation was in the low 80's and he was not doing well. The surgeon repositioned the tube and immediately the air started to flow out. It took over an hour, but R's body began to respond by increasing the oxygen saturation and his blood pressure slowly climbed.

During rounds, the doctor told us that they are going to leave in the chest tube for a couple of days to help the lung repair itself as the lower lobe had collapsed. They are again trying to wean down the settings on both the ventilator and the dialysis machine. Along with these goals, the doctor is going to see how R does with his g-tube clamped. (The tube that leads directly into his stomach.) This will force anything that is in his stomach to hopefully travel through the intestines and not out into the bag that is there now. The doctor wants the intestines and the liver to function again. If he tolerates the g-tube clamped for 24 hours, then they may slowly add food to his stomach. He has not really had any formula feedings in his life, so this would be a first!! Although there is so much to pray for in his little body, I pray that the feedings would be able to begin and the liquid would flow through his intestines without any trouble.

So, if you happen to be keeping a list of needs for R, here is our cheat sheet...

For his heart to stay at a healthy rate and pressure
For his kidneys to begin to function on their own
For his lungs to heal of influenza and the lower right lobe to heal
For the infection in his liver to heal and his liver enzymes come into balance
For his stomach to tolerate liquid and move it into the intestines
For his intestines to "wake up" and begin to absorb the nutrients and digest

and lastly

For the doctors to find the perfect balance of putting in and taking off fluids.

It has been a challenging time. I have been hopeful, hopeless, and everywhere in between. But what I am learning and living is that God is enough, He has the perfect plan, and He has the whole picture. We give R to him daily and trust in Him COMPLETELY.

Thank you for your prayers.

Day 18

Remember the comment yesterday about R's medication being switched from an IV drip to an oral delivery. At the time, we called that progress. Little did we know the medication would not be as effective as it had been when taking it through the IV.

Before retiring for the evening last night, Jen & I usually make a quick call up to the PICU to see how R has been doing since we've checked in last. When we called around 11:00 pm Friday evening, we were a bit startled to hear that his heart rate was well over 200 beats per minute, his blood pressure was falling and we could hear alarms going off in his room over the phone. The staff was working hard to gets things under control, including putting ice on him to try to slow his heart rate. So much for falling asleep quickly.

We spent the next hour praying and talking about all of the challenges R has gone through and how this must be taking a toll on his little body. After an hour or so, we called back and were put at ease as the nurse told me his vitals had stabilized and R was going back on the heart rate medication (amiodarone) delivered via an IV drip.

Jen & I made it to rounds this morning. All of R's vitals seemed good, except occasional flare ups from his heart rate. The nurse said it would take some time for the medication to build itself up to a point where these flare ups would subside. The surgeon ordered an increase in R's fluids, thinking he might be a bit dehydrated. We are hoping the extra fluids will help keep the heart rate and blood pressure at good levels, help the kidneys to do a little work and help R to look better (he looked a bit dehydrated). After rounds were over, we were able to sit in the room with R and spend some time with him.

As of 6:00 pm this evening, R has had no irregular signs with his heart rate, but his blood pressure is a little on the low side.

Thank you for your continued prayers.

Day 17

I just spoke with R's nurse and she shared nothing but good news. R remains on the high frequency ventilator and 24 hour dialysis. His blood gases are drawn every four hours. His values have been very slowly improving over the last 24 - 36 hours. As R improves, changes will be made to the settings on his ventilator and dialysis so that, eventually, he can be switched to the other ventilator and he can come off of dialysis.

R was also given a particular anti rejection medication for the first time today. He tolerated it well. He also switched from an IV to an oral medication for his heart (rate) medication. He also tolerated that well. The nurse told me she changed all of his dressings and gave him a bath and he tolerated those well also. If only all kids tolerated a bath as well.

We are very thankful to the Lord for this latest update. We know that God's hand is on R and we are going to walk in faith, believing God will restore him to good health. We will be sure to give God His due glory throughout the process. Thank you for praying with us.

Day 16

We've had a request to update the blog a bit earlier in the day. We're happy to oblige.

R continued to remain stable and make progress. Progress defined as getting needed rest. All of his "values" - vital signs and lab results continue to remain stable. This is a blessing because they were up and down for quite some time. The doctors continue to try to wean him (very slowly) off of medication and ventilation settings as much as he will tolerate. As of this morning, the nurses did go back up on a few of his ventilation settings overnight because of the changes they began to see in his vitals. He also received some blood and platelets overnight.

R has not had any major setbacks for the last few days. Progress continues to be slow, but it is progress none the less and we are thankful. Daily, I remind myself that this will be a long journey, but I also pray that God would restore him quickly to good health. Thank you for your continued prayers.

Day 14

It was two weeks ago tonight that we sat with the surgeon and he told us how well the surgery went. Two weeks later, R is doing well, but he still is in for a long fight. Jen & I are happy to be at his side.

As I was visiting, the internist and some nurses were doing some tests to see how R's lungs were doing. He tolerated the tests so well that they decided to put him on a different ventilator - definitely a step in the right direction. All of R's vitals and blood work remained stable throughout the day.

Jen & I both plan to be up for rounds tomorrow. Just before rounds, they plan to change the bandaging on his incision and ostomy site. We should get some good information tomorrow morning about how he is progressing. We will pray for a good night tonight and hope for a good report tomorrow.

Thank you for taking this journey with us! Your prayers are greatly appreciated!

Day 13

Yesterday, I promised a noon update. As it is now 8:48 pm, I won't make any more promises. Here is the news of the day...

Jen received a call this morning from the hospital that R was not doing well and we should probably come in. When the hospital tells you to come in, you know it's serious. Jen had been told that R's heart rate had been racing at 280 beats per minute and his blood pressure was falling. There was a liver doctor and "cardiac team" in the room evaluating him at that time.

By the time we arrived about 20 minutes later, R had stabilized and staff were trying to figure out what had happened. They gave him a pretty powerful medication that would keep his heart rate within a safe threshold. Throughout the afternoon, staff was paying close attention to his heart rate rhythm. They also have taken him off of dialysis for today to give his body a break. As of this evening, R is stable and is doing "very well" (in the words of the PICU nurse). He has had a restful day.

We have learned to take the good news and bad news in stride, at the end of the day being thankful that he made it through the day. The hospital staff has mentioned and we are beginning to realize that this could be a very long recovery process. Whatever the time table, we will continue to be thankful for R's progress and will look forward with great anticipation to the day when we will leave the hospital and take R home. What an exciting day that will be!

Thank you for your continued prayers!

Day 12

There is not much new news to report today. The bleeding that R had been having for the past few days seems to have been fixed. Doctors decided to pull some of the bandaging off today and found a source putting out a little blood toward the surface of his incision. They were able to cauterize it and, so far, there has been no bleeding. The nurse told us this evening that R's heart rate has been fluctuating to as high as over 200 bpm and then falling to around 170 bpm. They're not sure why it is fluctuating, but they are watching it closely.

Jen & I both plan on attending rounds tomorrow morning to hear from the doctors how they think R is progressing. We will update the blog tomorrow around noon.

We have been told by many people that they have had a hard time posting things on the blog. Jen & I would like to give you our email addresses and welcome you to send us any feedback. I also know that many of you are praying for R. If you'd like, we would be willing to send you a picture of him so that you have a face to put to his name (or initial).

Jen: jenbowes@cox.net
Tim: tbowes@emmanuelfellowship.com

Thank you for your continued prayers. We will update this site tomorrow around noon. Blessings!

Day 11

R continues to be stable and for that we are thankful. There are so many things that the doctors and nurses are delicately trying to balance. We are amazed and grateful for all of the care they are giving him. As of this evening, here is the days update...

R has gone back on dialysis. Over the past 24 hours, R has retained quite a bit of fluid and they are working to get some of it out. His G-tube (goes into his stomach) was oozing quite a bit of blood throughout the day. The suction on his surgical site was also pulling a lot of blood. R received blood to replace the blood he was losing throughout the day and platelets to help with clotting.

We also learned that R has two infections. One in his lungs and one by his liver. We were told at the start that infection is the number one concern in a surgery like this. We have been told that R is likely to stay on the ventilator for some time because of the infection.

We are so grateful for the prayers that you have been offering on behalf of R and our family over the past few weeks. Many of you have also supported our family in a variety of ways. For this, we are so very appreciative. Many of you are sacrificing with us in hope that R's journey leads us to a place of good health and restoration for his little body. As I think about R's past, he has never (and I do mean never) been at a point where his body has functioned like that of a healthy baby boy. Thank you for joining with us in this journey and hoping and praying for a recovery for R and a testimony for God to get the glory in all of this.

Blessings!

Day 10

Thank you God for touching R and keeping him through the night! R's little body has gone through so much in the past 24 hours. God's creation of the human body is amazing.

Through dialysis, some of the fluid was drained from his tissues, and he looks much better in his face. However, too much vascular fluid left his body overnight and this morning his heart rate soared and his blood pressure dropped. The doctors added fluid and blood products to help correct this. He has stabilized in many areas as of this evening. His oxygen levels are good. His heart rate is good. His blood pressure is a little high, but not terrible.

Those are all the goods for the afternoon. The not so good is that he has a virus in his lungs. It is a virus that they cannot give him medication for, his body needs to heal itself. I was told that he will be on the ventilator for several weeks because of this illness. He cannot fight off the sickness like our bodies can because his immune system is so depressed. (He is on anti-rejection medications for his new organs and this suppresses his immune system.)

R continues to be sedated and on a medication that paralyzes him. He is on the oscillating ventilator but they discontinued the dialysis for this evening. They may put him back on tomorrow morning depending on how he does for the night.

Thank you for all the encouraging words and phone calls over the past 24 hours. Thank you for coming to the hospital when we needed you. Tim and I have been so blessed by all of you. We are so grateful to all of our prayer warriors out there!

Day 9 - Part II

We made it up to the hospital around noon. We were told R had made it through surgery. The doctor found a bleed by his liver and was able to repair it. Rather than sew him up, they put some mesh in his wounds. In addition, they took about 5 cm off his ostomy and it looked very good. For all practical purposes, the surgery was a success. When we arrived, however, R was not doing very well and was very unstable.

The two biggest problems during recovery was that he was putting out a tremendous amount of blood. His blood pressure was critically low, his oxygen saturation was low, his hemoglobin was low and the chemical makeup of some of the things in his blood were out of balance. At the start of his recovery, we were fearing the worst as things did not look good. As the afternoon progressed, they started R on dialysis. Not only did it help his kidneys put off some fluid, but they circulated his blood through the machine to clean it. In addition, they also gave him some blood. The doctors and staff were watching him closely to see if the blood loss was due to more bleeding internally or just his body putting off much of the fluids he had been given and retained due to the two surgeries in two days he had gone through. Over the next few hours, the blood he had received helped his blood pressure, oxygen and hemoglobin levels climb and stabilize. His fluid output slowed, giving the doctors hope that there was no bleeding. Whatever chemical imbalances in his blood seemed to improve. He continues to be stable and showing some signs of improvement.

Today has been an emotional roller coaster. Not going well, making progress, deteriorating conditions, signs of improvement. Not a typical day, but not untypical either.

Day 9 - Part I

I talked with R's nurse at 6:30 this morning. He was unstable all night. His blood pressure and his oxygen saturation levels were both low. They had given him medication to keep his blood pressure up. It seems they did all they were able to do to maintain some pressure and keep him oxygenated. They had also given him blood because his hemoglobin scores were low. The doctor made a decision to bring him into surgery this morning, suspecting he was bleeding internally. As of 8:45 am, he is still in surgery.

We had been told at the start of this process that this can occur. Many times during a transplant, small perforations can be made in the bowel that lead to bleeding down the road. While it is not uncommon, it is a set back.

We are hoping that the doctor can find the source and fix the problem. We are also hoping this will stabilize his blood pressure and oxygen levels and will help with the respiratory issues he has had over the last few days.

Your continued prayers are greatly appreciated. We will update this later today.

Day 8

Today was a reminder of the long journey this will be. It was not a good day. The staff often remind us that this sometimes happens with these little guys.

The three tubes that R had taken out a few days ago were put back in. He is on a different ventilator because the previous ventilator was at it's highest level for assisting him to breathe. During rounds, the doctors were concerned because R's oxygen saturation levels kept dropping. He was given medication to keep him comfortable and to paralyze him. Keeping him still helped the new ventilator to be as effective as it could.

In the afternoon, a scope with a small camera was inserted into R's ostomy to see how it was doing and to take a biopsy. Along with seeing what is going on inside the organ, the biopsy will show whether or not the organ is showing rejection. The doctor stated that one side of the stoma had good blood flow and looked good. He had a difficult time penetrating the other side.

The doctor also ordered a CT scan this afternoon. Because R's condition had worsened, they wanted to see if there was any leaks of air or fluid into his belly area. The CT scan this afternoon confirmed what they had thought. There was some pressure in his belly from some air. Suspecting this, the doctors were on standby, ready to take him into surgery. The doctors had to reopen his belly and were able to relieve the pressure. The doctor said that it seemed some of the walls of the bowel were thinner, possibly indicating they had been irritated by the earlier procedure.

As of 11:00 pm, the nurse tells us that they are having a difficult time stabilizing his blood pressure and his oxygen saturation levels are in the low 80%. They should be at 100%.

He has had a difficult day today. We will pray that he stabilizes for the night.

Day 6

I started off yesterday by saying things can change day by day. What a difference a day makes. I made it in for rounds this morning. In the words of the surgeon, "the big picture is R is right at or a little ahead of where we would like to see him at this time in his recovery." That was music to my ears. Sometimes when you are in the midst of a process, you forget to take a step back and look at the big picture. That also serves as a spiritual reminder for me.

There was other great news today. R was breathing much better than he has been the last few days. The settings on his ventilator were down, meaning he was doing much of the work and doing it well. The tube that runs through his nose to his stomach was used to suction out his stomach. It was removed today. There was an arterial line in the artery in his groin that was used to measure blood pressure and draw blood. That was also removed. Lastly, R's catheter was removed as well. He still has the ventilator, two central lines (going into his heart), a G tube into his stomach and an ostomy site, but three less tubes is a great thing. The less tubes there are, the less chance for infection.

Another first today was Jen being able to give a sponge bath (for R that is). After the bath, she was able to hold him for the first time. R was uncomfortable with being held, but he settled down after a few minutes. The nurse was also able to suction a lot of mucous from his mouth that had come up from his lungs. Sounds gross, but it really helped clear up his lungs.

On another note, R's biological mother (knowing that I was a minister) asked if I would baptize R. Jen had the opportunity to briefly share about baptism and baby dedications to her. The mother seemed very open and interested. Also interested was the nurse. She asked some questions about baptism. As Jen and I debriefed tonight about the day's events, we felt God had opened a door.

Lastly, we are thankful for the great reports today. We hold on to these and optimistically look forward to the progress that tomorrow brings. Jen & I are being challenged. Not just with the obvious logistics of managing our family and a foster child in intensive care, but with maintaining our focus on providing as much love and care for R as we possibly can in the few hours a day we have with him while battling against the distractions that surround us, particularly in R's hospital room. We know God's grace is sufficient.

Thank you for your continued prayers. It is an amazing thought of the prayers of the saints that go before the Lord on behalf of R. Blessings!

Day 5

Jen & I have learned throughout this process that things can change day by day, hour by hour or minute by minute. I had the chance to spend a few hours with R this morning. I noticed when I first arrived that some of his vitals looked to be a little off from what they had been running, but with a little medicine and a treatment, they all came back to within good ranges. I was pleased to hear that his body was able to get rid of some of the fluid he had been retaining over the past few days. Not all of it is gone, but it is a good sign. The doctors mentioned during rounds that they believe the fluid loss has come from both some of the tissue in the body and some from the vascular system. This afternoon, R was given some blood to replenish any lost blood cells. They hoped that this would bring some of his vitals back to better levels.

Jen had the chance to spend some time this evening with R. She said that he looked better. All of his vitals looked good and his CO2 levels were much lower than they had been - he was breathing better. We are hoping that he continues to respond to the treatments on his lungs and that he could be taken off of the ventilator around mid-week.

There are a few things that we will be praying for until our next post:
- that R's vital signs continue to be stable
- that R's lungs will clear up, his body can get rid of retained fluids and he can come off of the ventilator
- that anything that might hinder, slow down or be a distraction to R's recovery would be eliminated

We count it a privilege to be a part of R's life and lift him up in our prayers. Thank you for joining us on this journey.

Day 3

R has had a difficult day today. His body continues to retain fluid and his output is minimal. The respiratory nurse also needed to increase the help that the respirator is giving him to breathe. She said that his lungs are having a difficult time oxygenating the capillaries. The nurses seemed concerned this evening. I am so glad that the doctors and nurses have all the knowledge that they do. They have been wonderful. As wonderful as they are we know that it is God, and Him alone that sustains R's little body. We pray that God touches R's kidneys and lungs tonight and causes them to work as He has designed them to work.

To be truthful, we are a little anxious for R to respond well tonight. The respirator is no longer assisting him at a moderate level, but at a high level. We are praying specifically tonight that God will touch R's respiratory system and kidneys and make it so that they are doing their job well. Thank you for your continued prayers.

Day 2

R continues to be stable today, however the doctors are concerned about the amount of fluid that he is retaining. They commented that his kidneys are not functioning at a high enough level because some of the fluid is leaving the bloodstream and being absorbed into surrounding tissue. They have increased a medicine to help his body reabsorb the fluid from his tissues into his blood stream and allow the kidneys to do their job. R went through the same issues with his kidneys on previous surgeries he has had. If the medicines fail to do this, he may start to receive dialysis. Also, the doctors will leave him on the venilator as there was some fluid on his lungs. As soon as his lungs clear, they may attempt to take him off of the ventilator.

There are some remarkable things that are occurring already. His skin is losing the yellowish tint and turning a lovely pink/tan. And the most joyous moment of the day was when I was reading to him and he began to move about, fluttered his eyes open and they were bright and white! If you have seen previous pictures of him, you may have noticed that the whites of his eyes had turned yellow from the advanced liver disease. The doctors told us today that his new liver is doing its job! I was so excited and just commented how beautiful he is and how well he is doing and I felt him squeeze my finger in his little hand. He then closed his eyes and went back to sleep.

The kids came up today to get their first peek at R. They seemed to be a little nervous at first, but then started to move closer, ask questions, and talk to him. We are so proud of how our children are sacrificing some of their summer time with us and are loving R as their sibling. God has surely prepared their hearts as He has ours.

Thank you for your continued prayers. We are taking things one day at a time. Your comments are an encouragement to us. Blessings!

Welcome to Bowes Believe!

We would like to share our journey with you, our friends and family, as we walk through this transplant recovery. In addition to providing updates, we will use this site as a place to share how we got started in foster care. It has been an amazing journey.

Please note that we need to keep our pumpkin's identity confidential, so please do not use his name in any of the posts. We will refer to him as R.

Post Transplant

Day 1

After being awake for close to 24 hours, we were exhausted, yet relieved that he did so well. R is stable, and is still on the ventilator and sedation meds. The dr. took him off the vent., but he did not breathe well enough on his own, so they put him back on it. They will try again tomorrow. His vitals continue to look good. We know that it will be one day at a time. Thank you for your prayers. We are believing for a full recovery!

As you probably have noticed, the title of our blog is Hebrews 11:1. A dear friend was praying for us and was led to this verse in the Bible, "Now faith is being sure of what we hope for and certain of what we do not see." By faith we are believing that God is moving in mighty ways in our lives and in R's. Our hope is that R will have a full and speedy recovery. Although we see obstacles and a long road ahead, we are certain of God's hand in all of it. He has already accomplished the miracle of putting R on the active transplant list, He provided a donor, and He brought R through a very complicated and difficult transplant. Oh, how HE loves HIS children!