Angel's Update

Things with Angel continue... He has reached a plateau of sorts and seems to have minor set backs and minor improvements on a daily basis. The doctors last week made no changes and want to continue to monitor his "baseline". His formula feeds are not quite at goal and he is still on a small amount of IV nutrition. This is something that 90% of patients are kept in the hospital to reach before they are discharge. Angel was able to come home and hopefully in a few weeks we will be on to the next goal.
Over all this baseline is definitely manageable, though he still requires 22 hours of continuous formula feeds, 15 hours of IV infusions, 8 meds. four times a day and he has three wounds that require daily dressing changes. These factors are the daily constants and with them comes the variables of energy level, nausea and vomiting, diarrhea, and over all behavior. Not to mention a slew of all the potential issues. But in summary Angel is doing good. He has had some really good days that are very encouraging, today was one of them. He was energetic and playful and over all feeling pretty well. The weather outside is cool in the 50's and Angel, despite the weather, played for over an hour today outside. It is really great to see the normalcy in that simple daily activity...

We are as a family are getting back on our feet. This whole experience of transplant has really rocked us. But I truly believe that it will leave us better as individuals and as a family. Bitterness could have easily overcome us. But it hasn't and though things at times have been overwhelming, we as family have made it though and continue to make it through. We will continue to give glory to God for His hand in our lives and for guiding us through. We want to continue to say thank you to all of our friends and family. Those that have stayed the course with us in spirit and in person. We would not have been able to make it without the love and support of others.

As Christmas is around the corner I hope and pray that you can take this opportunity to love and cherish those close to you and really take the opportunity to share and appreciate this truly amazing life we all have been given!

Getting settled

We are going on our 3rd week here at home. What a blessing it is to be together as a family. Last week was Thanksgiving and we spent it together with Sarah's parents at our home. The boys enjoyed the festive mood it put us in. We toasted sparkling cider over and over on the kids request until we finished off two bottles!!! =) The kids toasts included much praise for being home and for being together. It was a wonderful time. Sarah's mom also gave us the opportunity to go to church on Thanksgiving, it was our first time back in church in over 4 months!
This week is the boys birthdays, again we are going to keep it low key. We will have our parents over, give the boys a gift and have a special cake and ice cream. Sarah is out tonight picking out the decoration. Angel wants Star Wars and Hudson is leaning towards bugs... but it also thinking Star Wars would be fun.
Angel this week has hit a plateau of sorts. It is good to see things are not declining but a bit frustrating to not have made any progress over the last few weeks. The doctors are a bit concerned with some vague symptoms but will continue to monitor us from home. We are planning another trip to the hospital on Friday and will be drawing labs and seeing both the medical and surgical teams.
We are starting to get into more of a routine with being home. Angel's care is still more than we have ever had, our hope is after December we will be back to a baseline much like before. I am hoping to return to work in January, it has been a long haul and we look forward to establishing normalcy again.
Thank you all for loving us and praying for us during these times, we as a family are soo thankful and soo appreciative of your support. I will continue to update this website, though it may only be on a weekly basis... until next time, take care and God bless!

Home...

Wow!!!

I can't believe a week has gone bye... It has been soo wonderful to be home! But with getting home to a house and "life" that was abandoned for over four months has posed it's challenges. I believe after a week we have finally gotten back on our feet and can start to roll out the normalcy.

Angel last week had some bumps in the road, come to find out that he is C-diff positive. This is a infection in the intestine, it can be a real problem if it is not treated aggressively. So far the antibiotics seem to be working but it can take up to 10 days for results. With this infection Angel has been less energetic and has had more abdominal distension and diarrhea. We drew labs twice last week and brought him back to UCLA on Friday for a follow up appointment. After seeing him, the doctors wanted labs today (Monday) and him back to be seen tomorrow (Tuesday). They are concerned but will allow us to stay home to manage him as long as things don't worsen.

There is also a possibility we will be brought back to the hospital next week for more testing. It may or may not involve a hospital admission we will have to wait and see. Over all though, coming home was wonderful!

When we arrived we had friends and family in the yard cheering us on and greeted us with hugs. We had a few minutes of worship out front led by Sarah's parents, which was wonderful. Then we proceeded inside to Angel's "Make A Wish" room where they set up a movie theater/ video playroom in the kids playroom. It was a wonderful surprise and made the arrival all that much more special.

This week is Thanksgiving, I can hardly believe it. We had just celebrated the 4th of July before we left. This year we will keep it very low key and will celebrate here at the house with our parents. This holiday season is very exciting and memorable as we have a lot to be thankful for!

We are thankful for the saving grace given to us by our Lord and Savior Jesus Christ, through Him all blessings are given. We are blessed and thankful for the journey we have experienced. We are thankful for our family and the health of our children. We are thankful for Angel and the incredible miracle child he is! For Hudson for bringing the sunshine everywhere he goes! For Haven and the way she has brought our family together during this time. For the relationship Sarah and I have, and our God given ability to endure this journey and weather the storms together. We are thankful for all of the support we have received and the incredible out pouring of love from those that are both family and friends.

It has been a memorable time in our lives. A time that we will look back on with awe and amazement of how we went through such a time and lived to tell of the experience.

Thank you all for continuing to pray for us and support us from all over. This is the beginning of a new chapter for our family and we look forward to the life and adventures ahead.

Home Sunday?

We are cautiously preparing to go HOME on Sunday!!! After our last disappointment we want to be cautiously hopeful as a lot can happen in 24 hours! But the boys are getting excited and we feel like this actually may happen this time. We will spend tomorrow packing up and cleaning the apartment and hopefully arrive home at 1pm on Sunday afternoon as we had planned before. Once again, we welcome you to be there to cheer Angel home! The same plan goes where we will maybe sing a few songs and then head back to reveal Angel's Make A Wish to him. We will ask that no one really come in the house to keep Angel's exposure to a minimum (he will also wear a mask while outside with everyone). We'll be organizing playdates on an individual basis as his health (and others) allows. Oh how we look forward to that! It will be a short little welcome so we completely understand if some don't make it.

At clinic today Angel weighed 60lbs!!! He has gained 10lbs in a little over a month! This is the child who has taken 5 YEARS to gain his last 10lbs! They are going to cut down on his TPN and increase his J-tube feeds 5cc/hr to 60cc/hr for 22 hours a day. It is a joy to see him "bulk up". His cheeks are puffy from the Prednisone/steroids for antirejection, not weight gain... but his "slim" jeans are just a little TOO tight. ;)

Thank you for following us, supporting us, and praying for us on this journey that is far from over. We'll continue to update intermittently here even when we are home. There will undoubtably be ups and downs.

Keeping Track...

Trying to keep track of things with Angel has been challenging. With his recent admission the doctors were unable to pin-point the cause of the pain and abdominal distention. Prior to the day of admission, Angel had acquired a upper respiratory infection with cough, runny nose and sore throat. He also was started on medication to slow down the diarrhea and last but not least was given a flu shot. All of these figure into the events of distention and abdominal pain but at this point they don't give us the peace of mind as the definitive cause of the problems. Angel was looking better on Friday and was restarted on his home regiment on Thursday night of partial formula feeds and partial TPN. After evaluation on Friday morning the decision was made to send us back to the apartment to watch things closely. The doctors pointed out that things will either resolve or get worse... But while we wait it would be better to have Angel out of the hospital.
As of this point Angel has been getting better. Each day he is showing improved tolerance to activity and has had no complaints with regards to his abdomen. He has been a bit more nauseous but we think that is due to him having a cold and having the post nasal drip of his runny nose. But over all he is improving and we are back on track for getting to go home. It looks like we will be out here for another week or so for a total of about 120 days... that is if we get released to go home next week. =)

It still amazes me what this year has been like for us. We are thankful for all the support we have received, all the prayers that have been prayed and answered. It has been a long road and we will continue to have challenges ahead. Thank you all for reading this blog and staying in contact with us, your love and support has been felt!

Update

Angel was admitted to the hospital last night and had a CT scan done of his tummy at 11:30pm. His pain has been a bit less today and he has been quite active. The CT was fairly inconclusive and the doctors think that he probably had a forming ileus (slowing/stopping of the intestines) that resolved on its own. They have restarted his feeds tonight and, if all goes well, he may even be discharged tomorrow (Friday)!! We have resigned to the fact that we probably will not be going home on Sunday. But that's okay. We need to make sure that everything is stable before we are 2 hours away. Will keep updated on when we're coming home so anyone who is interested can join us in welcoming Angel home.

Hold Off

Well, you may need to disregard the previous post. Angel started complaining of pain in his side yesterday evening and it is getting increasingly worse. He saw the doctor today and they are ordering an xray and possibly going to admit him for a CT and even possibly a workup for surgery if it is necessary. I don't think we will be coming home on Sunday. :(

The Plan for H-O-M-E!

That's right. We have a plan.

Our goal is to come home Sunday, November 9th!!!

We have derived a secret plan to invite whomever is able to be in our front yard when we arrive home to cheer Angel in! Make A Wish is also going to reveal the game room that they did for him and provide snacks and a little "party" for Angel.

We are going to try to arrive home around 1:00pm Sunday, November 9th. With Haven being so sensitive and Angel's medical stuff there is a good possibility that it could be later than that. What we will do is blog in the morning how our timing looks and if we are on track for 1:00. If we are on the road and get delayed (i.e. stopping to nurse, stopping to fix pumps, etc.) I will call someone at the house to update everyone on our ETA.

We would love it if everyone could be in our front yard as we arrive to cheer Angel in... (ahhhh TEARS!) My Dad will lead us in Angel's 3 favorite worship/praise songs: Blessed Be Your Name, Trading My Sorrows, and He's Gonna Reign Forever. (Words will be provided) We'll head back to the backyard to reveal Angel's playroom/gameroom and have snacks or whatever the MAW people provide.

Now... the tricky part is exposing Angel the least possible and being sensitive to his needs coming home. It would probably be best if people stayed outside as much as possible (kids can play on the playground) to reduce exposure as well as just staying a short time for the celebration and a snack. I think it would be okay if people peeked in at the MAW but would ask that no one come inside and play THIS time - we will have friends over individually later to play with Angel and the new room in the next weeks. It is possible (okay, PROBABLE ;) )that once the reveal happens Angel will be done and want to just stay in the house, go to his room, etc. It is is his first time home since JULY 19th!!! I hate to have anyone travel any length of time to just stay for 30 minutes or less, so please don't feel badly if you don't make the trip!

Also, as a reminder, PLEASE do not come if you've been sick, feel sick at all, or have been AROUND anyone who has been sick in the last 48 hours. Even though YOU might not feel sick you can still carry a virus or illness without even knowing it.

**Since Make A Wish is providing snacks, they would like a general head count so if you plan on being there for our short celebration coming home, please leave a little note in the comments. THANK YOU!**

We are so looking forward to this day... There will be a lot of adjusting to do for ALL of us. We have really been through a lot in the last few months and are a little worse for wear. It will take some time to realize that life is very different now and also develop a routine with a new Angel and another little one in our home. (Who is NOT the easiest little thing. ;) )

I would like to also take just a moment to say THANK YOU to Nick for keeping this blog up. After Haven was born it just became too much for me (Sarah) and I have been so proud of how thorough and caring he is in posting here. Its fun to hear his thoughts and perspective.

Angel is doing EXTREMELY well... in fact, he is buzzing past me on the scooter while I type! How's that for great? We are so proud of him and SO encouraged. Hope abounds.

Haven turned 12 weeks today!

One of the greatest things about children...

No matter the situation, children (even ones that go through incredible surgeries and hospitalizations) see the world differently...the world through the eyes of a child...
Inocences, yet fun and playful, rule the everyday routine. So how I see it, is when you feel sick and act sick... then you are sick. This came to me today as I took Angel to the hospital to have labs drawn I noticed the adults there for treatment. Most of them wore drab clothing, slippers, rode in wheel chairs, etc. All those things are fine and good but something struck me. If they dressed as if they were on a business appointment bound to strike up a deal or in casual attire off to a vacation they would be dressed differently... They would look different and present themselves differently. In the same way kids don't have all that when they go out into the world, sick or not, they don't play a role game... They are like, "we're kids... who cares about all that, lets play!"
And so I write this entry with new perspective... Angel is playing again. In a way that is very Angel and without a care in the world. He continues to be into the superheros and action games. Sword fighting and role playing bring him joy. He is laughing again and being silly. His energy is good... not great but better than before transplant... which is very encouraging.

This week we are settling in as a family each day we are growing closer together and enjoying the time we have. It is still not normal and at times still stressful but we are together. God has given us this time to be together and we are enjoying it!

God continues to send His blessings. Situations that seemed bleak and difficult weeks ago are now opening up to reveal His plan for our family. Situations that spring-boarded us to the next opportunity felt scary in the moment but now point us back to Him.

God is good, His faithfulness is never ending and His mercies are new everyday. Our family continues to be blessed. We are His children and we now look at our world with a new perspective.

We want to continue to say thank you to all of our friends and family. Thank you for supporting us and cheering us on.

After my day today I feel a bit rejuvinated. Wondering why do we worry? We should just live and live obediently... thanking Him for all that He has done!

Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done.

— Philippians 4:6

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The boys on another adventure together:

We are all together...

Angel was discharged on Friday! This has been a very anticipated discharge as over 90 days have passed since his transplant. It is very nice to see Angel out of the hospital and playing. Though he isn't fully recovered from everything, as the healing is going to take a few more months. But his spirits are up and he is ready to get back to his old ways. He asked when we go home if he will be able to play on his playground and run around in the yard. He is ready but his body will need a few more months to catch up with this ambitious little boy.
It has been a little rocky integrating Angel's routine of TPN, feeds, meds, and wound care into the apartment life but each day it is getting better and I should have it hopefully figured out in a few more days! =)
But really the best part is being all together... Over the last 90 days we as a family only had 9 days together and I was able to stay with Sarah and the kids only about 10 more nights above that. So over 70 days separated by different living quarters, and now we are all together...and it really is wonderful!
The boys have adapted and are playing together. Today Angel and I had to go back to the hospital and have labs drawn. But we finished the afternoon making up for it and going to Angel's favorite comic book store. The boys dressed up as Batman and Robin and had a wonderful time playing.
This week we hope to get things situated and maybe by next week Angel will be close to getting off TPN. This will be huge as Angel has not ever had time off TPN (IV nutrition). Off TPN we should be able to go back home. Everyday we are working for that goal and praying that we are wise with how aggressive to push formula feeds and how aggressive in slowing down the TPN.
Angel and our family are soo grateful for the continued support of our friends and family. We would like to extend a special THANK YOU to our church who has sent us a a get well DVD, it was very special...Thank you!

Well it's late and time to get some rest. Hope this post was clear enough... as I am very tired. But thank you all for keeping up with us, we are honored to have friends and family like you...

Looking better everyday...

Angel is doing really well. It is soo nice to report that Angel has had an excellent week! His pain has resolved and he is soo much more playful. Everyday he has made progress, wither it be his toleration of the formula increases or daily dressing changes without complaint. This week is like no other week since transplant. Angel is also starting to have more clarity in thought and more focus in activities. His speech is still a little rocky at times but his discussions are very thoughtful and witty.
The goal this week is to get Angel back to baseline with formula feeds. He will be discharged at the same formula rate and TPN volume as we were on before we were readmitted. Though this regiment will be steadily changing as the goal is for no TPN in 2-3 weeks. Angel will be requiring a lot of meds and IV fluid hydration daily but TPN should be out of the picture soon. This is such a strange thought as Angel's entire life has been on TPN. We are excited for that day to come!

Also Angel still has two abdominal wounds that require packing daily. One is mid-abdomen about 6 inch x 3 inch & about 1/2 inch deep and the other is above his right hip 3 inch x 1 inch & about 1/2 inch deep. These wounds take a lot of time to heal. Initially the doctors said in 8-12 weeks and they would be closed but it looks as though it will be another 8-12 weeks before they are completely healed.

The big goal for this week is to have Angel discharged by Friday. Though we are not able to go home, staying in this area is better than being in the hospital. As a family we can plan activities and just spend much needed time together.

This week Haven turned 10 weeks old. Two and a half months since her birth... how time flew by... Wow it is soo incredible!

Well all good news as it pertains to Angel. Thank you all for your thoughts and prayers. The Lord continues to work in and around our lives daily and we are soo blessed!

Progress...

Each day Angel is making progress.... This admission has posed some very difficult times mostly surrounding the pain and suffering of procedures and surgery. But as time goes on things have improved and Angel is healing. Our little boy is starting to show signs of being himself agian. Sarah came by today and pointed out that Angel looks better now than he did when we brought him to the apartment almost 3 weeks ago.
We still have some post-surgical issues to work through and a very ambitious plan to be discharged at the end of next week. But over all these last few days Angel has been making slow progress but none the less it's progress.
Angel made it to the playroom the last two days and Sarah was able to take some pictures. It is soo wonderful to see him playing again! It's amazing to me that he is soo resilient and just able to put things aside and play.

Well we hope that this progress continues and in 7 short days we will be heading to the life of being together again.
By the way today is 87 days since transplant.... Boy what an incredible ride it's been!

Slowly recovering...

Angel is slowly recovering from this busy week. He has had quite a bit of pain these last few days since surgery. He also has struggled with anxiety as his whole world has been turned up side down for sometime now. Getting discharged 2 weeks ago was wonderful and much needed but Angel now is having a harder time adjusting to the hospital routine. He is requiring more with boundaries and structure than he had before. We have made a point of setting a daily schedule and routine. He bucks at the idea of specific task like bathing, dressing changes and walks but has realized that once these things are done he is able to enjoy the rest of the day. He is a brave little boy having to go through this major transplant and follow up operations. He has done soo well over-all and we are very proud of him. The plan will be for him to be admitted until he is back to tolerating his feeds to at least where he was before surgery if not a little better. Our hope is to be home before Thanksgiving and especially before Angel's birthday in December.
We will continue to encourage progress with Angel post operatively and look forward to the day that he will be running and playing outside again.

The rest of the family is doing well, we are soo grateful for our parents who have been there supporting us and working directly with us on almost every one of the 81 days we have been out here. Such a beautiful thing to have such a wonderful family. To be able to rely on them has given us the ability to stay strong and on course for this amazing mission of getting Angel his transplant and a renewed hope for his future.

Thanks again everyone for reading and supporting us during this time. It is a pleasure to share with all of you our daily lives and to know that you are praying for our family and especially Angel is beyond words...THANK YOU!

From procedures to surgery...

Angel was admitted as planned on Sunday night to be available for procedures and a possible surgery this week. The plan was to give him a blood transfusion on Sunday as his blood counts were low. Schedule an upper and lower endoscopy under general anesthesia on Monday, CT scan of his abdomen and then a barium enema on Tuesday and surgery on Wednesday to correct the prolapsed bowel coming out from his stoma.
As planned all things were done. The blood transfusion on Sunday went without problems. Monday the scopes were done to rule out rejection, infecion and to confirm that his transplant would be accessible in the future if they closed his stoma. The results of the scope biopsies were a bit concerning as 1 out of 12 specimens had signs of possible rejection. This though was not severe enough to postpone surgery for Wednesday. Tuesday was the CT and barium enema. Fortunately we had a nurse that was willing to go down with Angel to infuse the contrast in his central line avoiding the need to get poked for a IV placement. This sounds like not a big deal but in fact there was no other floor nurse that has ever done it. I guess it is a little know fact that this is possible. Speaking to the doctors they felt that is would be OK for her to do this and so they wrote for the nurse to administer the contrast. This study went well and then we went to have the barium enema. Unfortunately this study was not as easy to accomplish. Angel for good reason refused to comply and after negotiating, begging, and bribing we had to hold him while the test was administered. Accomplishing all these test in such a short amount of time was quite a lot for our little guy. He did receive a pretty good consolation prize including toys and video games for his good effort. After getting all the testing completed and reviewed, the surgery was scheduled as planned.
This morning Angel had his stoma taken down, or basically had all of his intestines reconnected. During this surgery the doctors found that his bowel had an intussusception of his intestines.
(Intussusception occurs when one portion of the bowel slides into the next, much like the pieces of a telescope. When this occurs, it creates an obstruction in the bowel, with the walls of the intestines pressing against one another. This, in turn, leads to swelling, inflammation, and decreased blood flow to the intestines involved.) They believe this happened a long time ago - back from his first illus where his intestines stopped working and they stopped all feeds and he had the vomiting and back pain etc. Not sure why the scopes, enemas, CT's etc did not show this. So it is highly probable that the pain, vomiting, lethargy, lack of tolerating feeds, and even the prolapse of bowel were all due to this. They had to resect (remove) another part of his intestines to fix this.

Angel is in a moderate amount of pain but doing quite well overall. He was more upset about waking up from surgery with an NG tube in his nose and later found that he had a foley catheter in his "pee pee".

Angel will require another week or two in the hospital and we will reevaluated the possible rejection before we get discharged again. The rest of the family is doing OK. Sarah and the kids continue to make the best of this difficult week. Haven turns 8 weeks old today. She really puts into perspective the amount of time we have been working on things post transplant. She is growing soo big it is incredible see her interactive and smiling. Mr. Hudson is also doing well but really misses his big brother.
Thank you all for your prayers. If it is true that the intussusception was the root of the problems we may have our prayers answered of moving only UP from here. Except the rejection I guess... as we still will need to deal with that later.
More on things later this week... Thank you all again for keeping track of us. We appreciate all the prayers and support. Till next time may God bless all of you!

Angel to be readmitted.

Angel will be admitted back to the hospital tomorrow (Sunday) afternoon/evening. They are going to do a scope through his ostomy as well as an upper and lower GI. He will also have a Barium Enema done and those test results will determine how soon they are going to do the surgery to take down his ileostomy. There is a possibility they will do it as soon as the end of next week but also a possibility he will have to be admitted later on for that. His ostomy continues to worsen and prolapse (the intestine is actually coming out of the stoma or opening even more). It is bleeding and we believe could be the cause of the increasing nausea and vomiting he is having. He has ups and downs throughout the day in regards to how he feels. As I type he is playing with his Playmobil set at the kitchen table.

We are trying to enjoy our last day as a family again for a while... It was wonderful to be home together for a week but almost makes it more difficult to have him go back in because we have experienced the joy of being together and the possibility of going home soon. We have been so content living here and beyond grateful for our provisions and current situation. But now we realize that we are tired and really missing home and the people there who mean so much to us. The journey is long. We will make it together.

Please pray for Angel to feel better... for the nausea, vomiting, and retching to subside. Pray that they will be successful in taking down his ostomy and "reconnecting" him. Pray that our family will be bolstered in this... "round 2" of hospitalization and being separated.

Wow it's busy....

It has been wonderful to have the family all under one roof. What a joy it is to work together as a team side by side not separated by a hospital admission. But WOW... it is soo busy. Angel has had some close calls that got us close to being readmitted to the hospital. Just after 6 hours home we were calling back to the doctors to report issues. We have been in close contact with medical staff daily. Everyday we go into the hospital for labs to be drawn and to be seen by the doctors. Angel has had problems with his ostomy since last week. This has now brought us to a point that he will require a "take-down" surgery to remove the ostomy and reconnect his bowel. This will be months sooner than previously planned. The repercussions are unknown as this is uncharted territory for a postop bowel transplant and usually reserved for a patient 6 months after transplant that is doing stellar with tolerating feeds. Angel has struggled with feeds and with staying hydrated but will require this surgery due to the prolapsed bowel from the stoma. We have now scheduled Angel for a CT, barium enema and upper and lower scopes of the intestine next week. If all looks good we will do the take down at the end of Oct. This then means that we will need to stay around the hospital for another 6 weeks if not longer. Our hope is that we are able to come home before Thanksgiving.
Angel is continuing to hang in there I ask that you pray for him as we are still in the trenches of this major battle of being at home post discharge. He also will be required to have multiple procedures and another surgery in the next few weeks. Which will also mean that he will need to be in the hospital for another admission. We as a family could also use your prayers and support. These busy days since discharge followed by a 70 day hospital admission have started to take there toll. We are hanging in there but it has been exhausting. One huge continued praise is the support of our parents. My Mom has stayed with us and has supported us during this transition. What an amazing blessing to have a supportive family during times like this.
Well it's time to get some sleep as we have to be up early to go to the hospital for labs. I will update more later. But as a general rule if I am not keeping up with the blog it's because I am barley keeping up with everything else. =)

What a rollercoaster...

Angel yelling "Look out woooooooorld!!!"

At the point of the last post Angel had started the week off a little rocky but by mid-week it looked as though home was near again. But on Wednesday it was clear that going home was postponed after some bleeding from his ostomy. After further review and 24hrs of monitoring going home looked like a possibility again, as the bleeding was only a one time thing. So another plan was made late Thursday that if another 24hrs went by without problem we would leave on Friday.
Friday morning came and everything looked great. But first thing in the morning Angel wanted to go "poop", which was very unusual. Turned out that he had more dark blood.... now from below. So at this point all bets were off and it appeared that the GI team would have to reevaluate and keep us in the hospital for observation a few more days.
But as the transplant rollercoaster goes the GI head doctor felt that it was to be expected with the issues we had earlier in the week and discharge on Friday would be fine. This news came at about 1230 as we sat back all relaxed figuring on being in the hospital over the weekend. But to our surprise we were being discharged and allowed to leave after one last infusion...Discharge was planned for 5pm.
After collecting all of Angel's things that accumulated over 66 days and getting Angel ready we packed up and actually left... Walking out the doors of the unit was very surreal. The head transplant surgeon that did Angel's surgery was coming out of the ICU and happened to meet up with us at the elevator. We shook hands, said a big THANK YOU and continued on our way. Angel came into the hospital with this great man welcoming us in and he was there on our way out...it was soo cool.
Angel also wanted to wear his super hero costume and was very into character as we left. When Angel walked out of the doors of the hospital, he stood at the exit looking outside and said with a loud voice "Look out Wooorld!" it was great...
Getting into the car Angel marveled at his car seat and even said woohoo when we pulled away, as if he was on a ride. But as Daddy picked up the speed to a raging 35-40mph =) Angel was nervous and asked to slow down...it had been awhile and being in the car was needing a little getting use to.
Once we got home it was pretty crazy unloading, showing Angel around, Hudson and Angel establishing their new territory, TPN, IV meds, JT meds, ostomy outputs...dinner & then bedtime. As we were getting ready for bed we noticed that Angel's stoma was discolored, as if the skin in a small section was not getting good blood supply....
So here we are less than 6 hrs at home calling back to the hospital to report a problem. I took a picture of the stoma with my phone and emailed the doctor on call. After talking to her at about 11pm we decided to observe it overnight & if it got worse to come into the hospital and be examined...
So though we were home we were on an extremely short leash...I stayed up after midnight watching for any changes. But it appeared to be the same and I went off to bed. In the morning the abnormal area appeared to be getting better overall but a small thin line was darker... After emailing with the doctor we are still home keeping a close eye on it.
What an emotion roller coaster. Excited to be home but very guarded. Angel and Hudson played really well today. Video games, action figures, house, outside play, etc... It was sweet. They are now both down for a nap and Sarah and I are resting. It is wonderful to be under the same roof and working together as a team. Sarah is an amazing partner she is very structured and organized and yet flexible and willing to jump in and help me with Angel's new cares. Little Haven is a bit more content these days and that helps with the routine as well as Sarah getting enough sleep.
Well our family is together and for a moment it is peaceful and very normal...we will enjoy it and savor it as long as it is granted to us.

Till the next time... Thank you all again for you love, prayers and support!!!

Well next week is already here….

Well next week is already here….
We made plans for discharge this week, all systems were Go. We had the doctors approval, suppliers on board and Angel was set up to be discharged on Wednesday. Over the weekend Angel had soo much fun playing and being off the TPN and formula feeds that he ran and played and climbed stairs and even wrestled a little. But on Monday and Tuesday he was really not himself, very sore in the abdomen and was guarded in all his activities. He definitely was not up for the activity he had done over the weekend. Because he looked soo good on Saturday and Sunday the GI team advanced feeds more aggressively over the weekend and converted meds over from IV to his gut. After a bit of resistance for soo many changes and the cavalier approach on the few days before discharge I compromised with the team. Our initial plan last week was to cruise out the door but the desire to take advantage of a good thing and to push a little harder for progress ended up overriding our intuition to be more conservative. With a handful of changes over the weekend and a last minute change yesterday Angel had another set back overnight. In the middle of the night Angel woke up to more intense abdominal pain, nausea and vomiting. This persisted throughout the day today. It was clear that we would be postponing going home to figure out the problems and get Angel back on his feet running around again.
One of the main concerns is that Angel has not tolerated feeds over this entire admission. All other body systems have been great but the rate limiting step in getting us discharged is the gut not tolerating the feeding regiment. We had a major setback about three weeks ago with an intestinal blockage. I worry that we may have another blockage like situation brewing. My instinct is to back off of the this feeding regiment but I know that we probably would benefit not changing too many things at once and my main concern is stopping a med that is designed to slow down his intestine. This med allows him to have less diarrhea and more absorption but in the current situation I feel that it is causing the abdominal pain and nausea and vomiting. The medical staff is not all convinced but in fairness they are allowing us to hold that med for 24hrs hoping to see improvement. Today they also did an X-ray of the abdomen, it was not helpful in giving us a direct answer but more of an indirect answer of what is not going on. He does not have an obvious blockage but the intestine does not look normal, so we will wait and see what the team says and what Angel does in the mean time.
Tomorrow the teams meets again for Grand Rounds and with all services together we may have some controversy about what is going on with Angel and how best to handle it. But in it all I hope and pray that Angel is looking better and feeling better and we will move on in a positive direction once again.
Angel was feeling pretty lousy this morning and by evening he had a bit more spunk in him. He is still interactive but not playful. We had given him a surprise toy to offset the change in plans on not going home. He was thankful but hardly wanted to play. The most energy came today when Sarah brought baby sister. Angel was very happy to see her and wanted to hold her and talk to her. He was very sweet and gentle as he is a very good big brother.
During these ups and downs battles are won and lost. Progress is made and setbacks happen. We had hope for our first night together as a family under one roof but it will have to wait. Most importantly Angel will start feeling better and soon enough we will make new plans for home. So we look back and know that all these battles have a purpose and all these battles belong to the one who cares most about us, the Lord. He has continued to strengthen us and bless us with His presences in our lives. He has also given to us an incredible family and an amazing blessing of this special calling. We will endure and these situations as a whole will make us better and more reliant on Him.
We will update more later thank you for your prayers and supporting us.

"Officially" Announcing...

(Click to view larger)

Thought I'd add a few pictures of Angel and Hudson's time together running free at the hospital. We are still on track for discharge next week to our apartment. We are looking so forward to it!

And how about some recent pictures of little Haven?

4.5 weeks
5 weeks

Making plans…

Monday and Thursday are the two big days around the hospital for making new plans or changing old ones. Though everyday the doctors talk about and refine their orders, it is the “Grand Rounds” that brings all services together. Today the plan is to continue the steady slow pace of increasing formula feeds and decreasing TPN. Angel continues to have borderline high output and so the slow steady pace is looking to be the best way about things. Our plans are to bring Angel home next week but this may change when we get closer. Discharging home is a big ordeal so much so that the team will not attempt a discharge on Friday for fear that if something is missed there will be little help available over the weekend.
Angel will be switched today to a more concentrated formula, one that will provide more calories with less volume. As the volume increases many times so does the output and with increased output Angel will be in the hospital longer for follow up and further evaluation. At this point the team is on pace to have Angel off TPN in a few weeks. Figuring this will happen about the time we will be heading back to our original home.
The life after liver, bowel and pancreas transplant is one that is very complicated. More complicated than before being just on TPN at night and a few meds during the day. Angel will be immuno-suppressed and will require isolation, he will still be on TPN 12-14hrs a day, will require 18 hrs a day of formula feeds, has 10-12 oral medications up to 4 times a day, has an abdominal wound that requires dressing changes daily, still has his central line, g-tube, and an illeostomy. All of these things will be apart of his life and ours for sometime. Some may not be needed down the road but life in the next year or two is much more involved than the previous years. The upgrade for Angel in all of this is that he has fully functioning organs. The liver failure alone caused soo much grief for Angel and burdened him with daily struggles of just not feeling well. Also the nutritional status will be much improved. The combination of having a healthy liver and intact intestine will allow for Angel to grow and develop more normally. Already I see him engaging in more academic activities as he is thinking more clearly and is just feeling overall better.
This overall improvement has translated to having a much more active little boy on our hands. He told the doctor yesterday that it wasn’t soo fun having a big IV pole with pumps because he wasn’t able to “run free”. So today they allowed him to be off for two hours, completely off everything. I think this is one of the first times since his adoption day party. Once disconnected he played in his room for a few minutes, climbed up on the couch and window ceil and stood up on the small side table, after a few minutes more he wanted to go on a walk. After leaving his room at a slow pace he realized he was not attached to the pole and started to run. He ran all the way down the hall and to the playroom to ride the jeep and other ride on toys. It was quite a site, somewhat uncoordinated in his gate his run also resemble a bit of a skip…it was wonderful to see. After about an hour of play we went on a walk…not just any walk but one that went up and down stairs, on the dirt paths outside and just about anywhere that was not so easy to get around before.
So this is the new Angel, ready for the life after transplant. He is energetic and playful, a bit feisty and ready to play. It has been quite the adventure being here at the hospital for 2 months. We as a family will continue to adjust and adapt. We will be stronger for going through it together. We will continue to support this amazing little boy and will make plans to go home to start our new life together… hopefully as soon as next week.

Keeping things going...

Over the last few days Angel has progressively improved. His intestinal blockage has appeared to have resolved. No further test for the fluid collection has been done as the theory of a hematoma was given and therefore it should resolve naturally in time. So far it appears that they were right and everyday Angel is improving. The team has begun to start formula feeds again and Angel has tolerated the daily increases in overall volume. We are at 20ml/hr with the goal of 65ml/hr in order to go home. He is still receiving TPN and it is being weaned off daily as preserving the new liver from any excessive damage is very important. Our new goal at this point is to get discharged by the end of next week it will be around 70 days at that point. From what we understand, 80 days is an average stay post liver, bowel and pancreas transplant. When we had tried to go home at the 45 day mark a week or so ago it was very early and the team was very impressed we were looking to go home. But as things went we have made progress more in the average range. But progression is the key and at this rate we will be home soon.
It has been such an incredible time for our family. We have experienced such an incredible range of emotions and experiences. Little Haven has grown soo much in these last 5 weeks. She has been definatly more colicky than we had anticipated. This has been very difficult for Sarah as well as our family. Little Haven came into this world with some impressive lungs and clear voice and she continues to express herself daily. Sarah is fine tuning her feeding and sleeping schedule and things appear to be more manageable. Once we are together as a family we will be able to help each other more. I am only going home a couple hours a day and sleeping over night with them once a week. We are very blessed to have our parents who continue to alternate every few days staying to help us maintain some normalcy during this time.
Our middle son Hudson is growing up before my eyes. He seemed to really mature this summer. From toddler to little boy, his interests are bugs, snakes and dinosaurs. He also loves video games and it is soo impressive to watch him pick up a controller and navigate a game as if he has played it before. Also puzzles he has discovered and just like video games he opens up the puzzle and puts it together with focus and confidence like he has done it before. He is a good boy and I think this experience really has been the hardest for him. Such a life change with brother in the hospital, moving to a new place, Dad not home very much and now fussy little sister. But he continues to smile and play and is coping well considering everything.
I will continue to update about every other day. Angel’s new intestine will be put to the test this week with the hope to make it to the apartment in 10-14 days and head back to home at the end of October.
Thank you all for your interest in our family for your love and support from all over. We appreciate all your prayers and will continue to be confident in our God who is bigger than all of these things and who has carried us during these last 55 days.

Overdue Update

Over the last few weeks Sarah and I have been very busy and have not been able to keep up this blog. I will enter my first blog entry tonight and also will attempt to keep it updated.
I believe the last time we updated this blog we were just getting little Haven settled at home and Angel was on a quick road to recovery. Haven is now going on her 4th week of life and things with Angel have hit a significant snag. His bowel has not tolerated formula feeds and has now gone into a generalized illeus with significant nausea and vomiting. He had a CT that confirmed the generalized psuedo-obstruction pattern that is throughout his small intestines as well as a fluid collection that is contributing to the obstruction in the lower intestine. The fluid they feel is a result of bleeding after the scope and biopsies that were done in the intestine last week. This fluid collection should resolve with time unless it is more complicated than we are aware. He is also being continually worked up for infection as they feel confident that rejection is not an issue as of right now. He has been taken off feeds for strict bowel rest and is back on TPN. His outputs (diarrhea) have continued and are much higher than they should be. We will slowly reintroduce formula feeds over the next few days and will hopefully get back on track for a discharge in the next couple of weeks.
We have now passed our 50th day here at the hospital. The GI team feels that though the bowel is not infected and continues to be rejection free, it is not function appropriately and it may be due to the poor nerve innervation post transplant. They reassure us this should also improve with time. We will be here at the hospital for at least another week or two and will need to continue to stay in and around the hospital through October.
Over all our family has been hanging in and functioning on survival mode. I usually spend 18hrs a day with Angel and have stayed 45 nights with him so far. As a family we spend a couple of hours a day together in Angel’s room or in the playroom. Today Angel walked Haven in her stroller trying to soothe her to sleep. He really enjoys the time she is here with him. This week Angel has also started in-hospital school which is for about an hour a day. This has been really great for him as it gets him focused on something he enjoys and also provides positive feedback for doing soo well.
Both Sarah and I have had time together thanks to our wonderful parents. The Moms have taken turns with staying with us during this time. The Dads have also contributed their time to be available. We would not be who we are with out these amazing people who have given of themselves. THANK YOU!! Moms and Dads.

I will attempt to keep this blog more updated over the next couple of weeks. We are thankful for all of your support and prayers and we know that God has and will continue to uphold us and strengthen us during this time.




I added this picture of Angel with Haven, as he loves to hold her during her visits.

Thank You

First, a quick update on Angel.

Not a lot has changed. We are still working on getting his formula feeds up so that the TPN (IV nutrition) can come down and he can come home. It is most likely that he will come home on some TPN at night. He is also not tolerating the medications they are trying to transition from IV to G-tube (in his tummy). He vomits each time they give the medication. When he is home he will be on infusions 24 hours a day with dressing changes every day on the wound on his belly, ostomy care and more than I can explain. But he is obviously stronger and spunkier and ready to come "home" possibly even next week. We will need to stay close to the hospital for a minimum of 3-4 weeks after he is discharged. We've already received a huge box full of his medications for when he gets out.

As the title of this blog says, we would also like to take a moment to express our thanks to all those who love us and support us so much. It has been overwhelming to see the amount of selfless giving that we have received. In the 24 hours after transplant we received 100's of requests of "what can we do?" "how can we help?" "WHERE can we give?". Many of those being far away and we, ourselves, being too far from home to just receive meals or babysitting and other tangible things. Thank you to Sandy for starting and upkeeping this blog and wanting to start fundraising for us. Thank you to my Dec 04 Moms for starting the TeamAngel website. And thank you each individual who has given ANYTHING - be it $10, $100, prayers, or just checking the blog and caring about Angel. ALL of this done without our ever requesting any financial support. Those who love us have given not because we asked but because that's what friends do when someone they love is going through difficult times.

Our family has gone through a lot and the sacrifices have been many in the last 5 years since adopting Angel. But - even when we get weary - we are encouraged by remembering that this is our calling and our passion. We would give every financial and physical thing away to have our son well again. But through your love we have been blessed not to worry about finances for a time. That is true and selfless love.

Thank you from the bottom of our hearts.

Adoption Day!!!

Yesterday (Friday the 22nd) we celebrated Angel's Adoption Day four years ago. Our usual celebration is to go to Disneyland like we did the actual day of his adoption, but that is obviously not possible. I will share more about the day later, but here is a picture in the meantime!

Angel in his Team Angel shirt (www.team-angel.org)

My apologies for taking so long to update! I'm sure you all understand why. :)

Haven is 9 days old and doing wonderfully. She is a precious little girl with a great personality. She is a lot like Hudson but with that girly "I'll let you know what I want" flair. She rarely cries but gives a "piglet" squeal when her needs aren't adequately met. Here is a picture of her the day we left the hospital:

Angel is doing quite well overall. There are still quite a few bumps in the road. One of the most major ones is that feeds aren't going very well. Each time they increase formula feeds into his GJ tube (straight into the intestine) the stool output into his ileostomy increases significantly. This is often a sign of rejection or infection but it appears that it is directly related to the amount of feeds he is receiving. There is a possibility that he will be discharged on TPN (IV nutrition) as well as feeds. If this is the case, Angel's care will be full time - 24hrs. He will be on 12+ GJ medications (anti-rejection, steroids, etc.), IV fluids, TPN infusing 12-14hrs, GJ feeds 24hrs a day, caring for his ostomy, wet-to-dry dressing changes on his belly wound, and monitoring all of his "ins and outs" - which means measuring everything that goes INTO his body and EVERYTHING that comes out (vomit, stool, urine, etc.). It is very likely that Nick will not be able to return to work for a few MONTHS after discharge as Angel's care will be so intensive.

There was talk recently of discharging him already in the next week or two but some doctors on the team feel its a little premature. They are in the process of changing a lot of his IV medications to be able to be administered into his GJ tube. They also want to track his feedings a bit longer. Angel has also been having pretty severe headaches with vomiting for about a week. We are narrowing it down and think it may be due to one particular anti-rejection medication. He is VERY puffy and beginning to show signs of the irritable "steroid" behavior that we have seen him in before. All things to be prayerful of.

Again he is doing VERY well overall and all the things are just small bumps in the road.

Today we are celebrating Angel's Adoption Day which was August 19th. Usually we go to Disneyland each year as that is where we went after the courthouse on his actually adoption day. This year since that won't be possible we are having a SuperHero party with cake (which he can't/won't eat), a friend, a few games, and Angel getting to be disconnected from all his lines so he can drive the jeeps out on the playroom patio. Being disconnected is one of the biggest gifts to him.

IT'S A GIRL!

Ok, I know...we already knew that! Sarah and Nick had a baby girl today! I don't have a lot of details yet, but I can tell you 7 lbs 6 oz, and 19.5 inches long! AND HEALTHY! Yay! Welcome to Haven Anneliese! More details as they come!

Good News Day

Happy to report that the biopsies from the scope of the intestine yesterday came back negative for any rejection! All the cultures, tests and such have been negative for infection or rejection as well. The only positive culture we had was from the fluid in his tummy during surgery last week and they are treating that with 14 days of antibiotics. He had a very good day with little to no pain and got up and walked a little and sat on the couch in his room for a while too.

Tomorrow we welcome little Haven into the world. With all the good news today and Angel doing so well, we are ready as we can be. :) I will bring my laptop to the hospital and hopefully be able to post a picture and updates from there.

Thank you for your prayers... it is SO evident that they are working!!!

Just a real quick update today. Angel has had some unexpected and unexplained bleeding. They are unsure of the cause of the bleeding and are awaiting the results of some tests that will hopefully show exactly what's going on. It does not appear that the bowel is rejecting, Sarah said that things don't look "pristine" but they don't look like rejection either. They may also be ordering more tests to look for any other causes as well. We'll keep you updated as things progress. Thanks, as always, for all of your prayers.

Comments!!

Thank you all SO much for your comments... It really does help keep me motivated to keep YOU updated knowing who is reading. Just wanted to add a note that I am reading ALL of the comments left but am not publishing some due to safety. Since this is such a public blog we are keeping last names, locations, and different factors "safe" due to Angel's precarious birth family history. But don't worry, I read them even if I don't publish them!

Wonderful day... but a "bump" to report

Angel had a fabulous day today... After getting him up into a chair to bathe him and seeing that he could stand we thought we'd "push" him a little and see if he could take a few steps. We encouraged him even just to walk from the chair to the bed. But, in true Angel fashion, he wanted to keep going. He walked for about 20 minutes! Down the hall... past the playroom... back again... And when he got to the room he wanted to sit on the couch - a place he hasn't been able to get to yet. It was wonderful to see him up and about and his spirits were so high getting around by himself! It is hopefully the beginning of a lot more independence for him and his spirits being higher since he's not just sitting in his bed watching TV.

Two days ago we had a very very difficult day where the pain medication caught up with Angel and he itched unbearably for almost 17 hours straight despite our best efforts with 5 different medications. He rubbed a bald spot in his hair, got bruises, scratches, was at his IVs, wound dressing, everything. Literally just out of his mind with itching all over. It was very difficult for us as he was SO uncomfortable but we would often have to hold his hands to keep him from hurting himself. He finally fell into a deep sleep at 2:30am after some medication to sedate him, lots of anti-itching meds, and a medication to completely reverse any pain medication in his body. He slept until 2pm yesterday!!! He woke up and said "Good Morning, Daddy... I don't itchy anymore!" Thank God. So today was a great day with him up and walking after such a difficult day two days ago.

Unfortunately, on such a wonderful day there is some bits of not great news to report. Angel's ostomy outputs have been high again. The last time this happened it was in response just to the increasing of formula feeds. However, it is the number one indicator of infection or rejection. We also received news late afternoon that some cultures they took of some fluid in Angel's tummy on Wednesday during surgery came back positive for 2 bacteria. It was very light growth and they weren't too concerned at first. But one of the bacteria is a very virulent bacteria that caused his site infection last fall and caused the decline that brought us to transplant in the first place. A little disconcerting to say the least. They are starting him on a pretty heavy antibiotic tonight and culturing everything to make sure its not somewhere else.

He has another scope tomorrow morning where they will look at the intestine and also take biopsies so it is, once again, good timing with outputs high and cultures being positive. The infection can probably considered the first true "bump" in this journey... VERY very dangerous. Cause for concern but not panic yet.

Thank you for checking in on us... I know many people have this blog but not sure exactly who is checking it! If you feel so inclined, leave a little note in the comments so I know who's reading - even if we don't know you, introduce yourself. :) It helps with motivation to keep updating!

(You can post a comment under "anonymous" even if you don't have a blogger account. All comments are moderated before being posted to be sure that some details are protected as this is a public site. :) )

Surgery #3 in three weeks.

Angel visiting the playroom a few days before surgery.

My apologies for not updating sooner about Angel's surgery on Wednesday. First, our prayers were answered about pain. His pain has been much less overall than the last closure surgery when it was more than he could bear. Now... the reason for that is God's interesting way of answering our prayer. ;) They were not able to close Angel's tummy the rest of the way. There is simply not enough skin to stretch over the new organs. I know it may sound so very odd - as it is really taking some time to get used to for us as well - that he is going to be living with an open stomach, but it is true!

(*This is a bit gruesome, I apologize*)

The skin on his lower abdomen is cut in a football shape about 7 inches wide and 5 inches tall. Covering the intestines and tucked under the edges of cut skin there is a little layer of synthetic skin called "alloderm". There is gauze dressing that covers it and pads tied over that. Supposedly (I have to just believe what they tell me!) the skin is going to pull together and grow with the alloderm to form a layer over this large open wound. If it does not grow completely over they will possibly do a skin graft in the future. As of now, however, this is it. No more surgeries or closures planned. We will have to do dressing changes twice a day on the wound to keep it clean and dry as it heals, however.

Due to the fact that he was not stitched, his pain is less. However, they maniuplated his skin just TRYING to close him so he is having quite a bit of pain. They worked so very hard after surgery to control his pain that he came up to the room and said "Mama! My tummy doesn't hurt anymore?! They FIXED it in surgery!?" :) A few minutes after he was in pain again, but it was still cute to hear.

Now we ride the bumps of post-transplant recovery. We are giving him as much formula feedings in the GJ tube in his tummy so that we can start weaning him off the TPN (IV nutrition). He will also start physical and occupational therapy possibly next week. The eminent dangers are still rejection of the new organs and infection. So we are watching for large outputs in his ostomy (pouch where his stool exits his intestines), fevers, pain, and doing scopes each week with biopsies of the intestines. It is the intestines that are most likely to reject... the liver is the "easy" part! It is usually happy just once the patient gets off TPN.

We are on countdown for the birth of our baby, Haven. Her c-section is scheduled for Wednesday, August 13th! Both boys have a calendar that they cross off a day each day in anticipation. Although it seems like the timing is crazy, we know that God planned her to be here and are so excited to welcome our daughter/sister into the world.

Thank you, always, for your prayers and support. Some of the things we have used it for already is, of course, the housing, gas, a $100 parking pass for the hospital, food (groceries for the new apartment... someone asked just HOW many people I was feeding! I answered I was FILLING cupboards and a fridge!), meals at the hospital cafeteria when we cannot get back to the apartment, and some necessities for the apartment. That is just a few of the ways we have been able to use the support. But it makes SUCH a difference not to constantly be worried about finances when you have to pay for a meal at the cafeteria, for example.

Thank you.

Angel has been through a lot in the last few days. After the biopsies, it was determined that he was not rejecting the bowel...Praise God! So, the decision was made to close him completely. They did so using a synthetic skin that will eventually graft with his real skin and just become a part of his body. (BTW...if ya couldn't tell, it's not Sarah writing! So, forgive me for not having all of the correct medical terminology!) The surgeons have said that this is his last surgery...YAY! So, from here on out all Angel has to do is get better. They are looking to increase his feeds from a formula and get him off of TPN as much as possible. When they get that to a certain percentage of formula vs. TPN, they will allow Angel to go back to the apartment where the family is staying.

Sarah is getting prepared for her own surgery soon and getting ready for baby Haven's arrival. Please keep that in your prayers.

Angel's progress has been astounding as 80% of patients who undergo this sort of transplant have some sort of infection or rejection issue. Angel has not had to deal with any of that. So, thank you for all of your prayers and for your blessings on this family. Continue to pray! Keep Sarah in your prayers as she feels pulled in every direction and can't be in all places at once. Pray for peace in her spirit as she settles into this new phase with a new little one who will need constant care. Thanks!

Moving forward...

Angel was moved to the regular floor this weekend. There are many pros and cons to the floor. We miss the care of the ICU but are grateful for the other details. Angel's pain has been continuously better every day. He's finally watching TV because he's not afraid to laugh as much. :) This weekend he also got to go to the playroom with Hudson. They played video games and drove remote control cars outside together. Sweet times. I was also able to go home for a few hours this weekend and gather everything up for Haven's arrival - which is in 9 days!!!
Today Angel is scheduled for a scope of his intestines under anesthesia again. He is having higher output so they are hoping it doesn't mean rejection of the organs. Today's scope will help determine that. His second surgery closure is scheduled for this Wednesday. So we can use your prayers for those two things. No rejection. And prayers that they will be able to close him ALL the way this time and with the least amount of pain. His last closure surgery was the roughest part of this for him so far. Haven's birth is just 7 days after his surgery so we are praying that he is feeling better by then!

Day by Day

Angel's pain has been slowly better each day. He is still not himself and doesn't even really want to watch TV or play at all. Yesterday, however, we were able to get him into a wheelchair (out of the ICU!) and into the playroom where he played video games for a little bit! He is not the spunky boy we saw before the recent surgery to close him, but it is coming back a little bit each day. They plan to do another scope into his intestines on Monday to look for infection or rejection of the new intestines. Then they will possibly try and close the rest of his abdomen on Wednesday or so.

We are on countdown for Baby Haven to be born... her c-section has been rescheduled to August 13th. So only 12 more days until her arrival. With Angel's surgery happening next week he will still be recovering from that second closure surgery when I have to go in for surgery myself. If only we could plan this all perfectly. But we know we have Someone who IS planning it all. We will just walk by faith and take it day by day - trusting that there IS a divine and perfect plan.

Pain

Angel is in a significant amount of pain again today after his partial closure yesterday. He is sleeping on and off and in pain while awake. Please pray for the pain to subside...

Surgery

Angel's surgery went well today. They were not able to close him all the way as they had hoped because his new bowel/intestines were too dilated. However, they were able to close about 65% of his abdomen. He is in a significant amount of pain and crying a lot. However, the pain medication is working and he is sleeping beside me right now. The doctors will go back into surgery in another week and try to close him all the way. There is a possibility that they will need to use some synthetic fiber that grows like skin if they cannot close his own skin all the way.

Another tidbit of news in our lives today is that the c-section of our baby, Haven, has been moved to August 13th at 11am. Angel may only be a few days post-op from his second closure surgery, but we will deal with that timing as it comes.

We are moving in to our apartment tonight as well. We are all looking forward to being close to each other and developing a routine.

Please pray for Angel's pain tonight...

Miracles and Milestones

Angel is continuing to surprise doctors by how well he is doing. His spirit is amazing. This morning he woke up and when the nurse opened the blinds on the window he said "Its an AWESOME day!" There have been a few minor bumps in the road such as some rashes on his hip and groin, a Urinary Tract Infection from the catheter, and some pain and cramping intermittently, but overall he looks nothing like a patient who had major transplant surgery just one week ago and an 8in x 8in open wound on his abdomen!

Today he had an endoscopy through the ileostomy on his stomach to look at his new small intestine and see how his colon/large intestine are looking. (He had pretty severe ulcerative colitis before the transplant and he still has his old colon.) The new bowel looks great and the colon is still looking like he is having colitis. We have been seeing blood in his stool, so that just confirms that. He did great with the procedure, however, considering 1/1000 first scopes have perforation of the new bowel.

Tomorrow they are going to go in and do the first surgery to try and close up his abdomen over the new organs. Their primary goal is to get it at least 50% closed. We are hoping that they can do more, but trust that they will do whatever is right.

So tonight you can pray for:

• Continued protection from infection and rejection


• Safe surgery tomorrow with the least amount of pain and most amount of closure!


• Continued GREAT attitude from Angel


• For the bleeding and colitis to stop

Thank you for checking in on us.... we are BEYOND grateful for all of your prayers and support. We are hoping to move in to our new apartment one day early as we do not have any more temporary housing. My (Sarah's) Mom will come to live with us with our little one (Hudson) so that we can all be close together and settle in to a routine before baby Haven arrives on August 15th. Housing, of course, is our biggest expense at this point. The other need for support arises as Nick will be out of work for the duration of our stay here. Therefore our mortgage and bills at home will need to be paid as well as expenses accrued while we are here. So thank you for all your help. A million times over, THANK YOU.

Hi everyone! What a blessing it is that so many are visiting this site and sharing it with friends, churches, loved ones, etc. I know that Angel's family appreciates all of you so very much. Your donations to the ChipIn fund are soooooo much appreciated. The family has found a place to stay that will be requiring an $11,000.00 deposit. Keep 'em coming! They are planning on moving in this Wednesday.

Angel is still doing well, but has been experiencing a bit more pain in the last few days and has not been quite himself. Please keep the prayers coming! He got to visit with his little brother yesterday and little bro also got to spend some much needed time with Mom & Dad. Not an easy time for him, either.

Angel is scheduled to have a procedure on Monday that will determine how some things are coming along and could be moved to a regular floor, out of the ICU today. That is not definite yet, but a good possibility. I'll keep you updated as we know more.

I received an email saying that the ChipIn link didn't seem to be working properly. I will check into that more thoroughly later today. Rest assured, if you have had a problem with it registering your donation, the family has a record of your donation. So, fear not...it will be accounted for.

I thought I should also add that, as you've prob figured out by now, I'm helping the family maintain this site, and for those of you who know them well, and might be concerned, yes, they know about it, and we are working on it together! So, sometimes you will see posts from me and sometimes posts from the family. So, don't be concerned. All is well! OK-I think that's it for now. Thanks for all of your prayers and support.

The Honeymoon

Angel had his liver, bowel, and pancreas transplant 7/20/08 just 13 days after he was listed. The organs were large and they were unable to close his abdomen after the surgery. He is in the ICU now and had the breathing tube taken out just 1 day after the surgery. Everyone is astounding how well he is doing. Today, however, he is a little more awake and aware and feeling quite a bit of pain. (Prior he had only been getting pain medication TWICE a day!) He is a very strong boy and we are so proud of him! The family is seeking long term housing and will view some apartments this afternoon. It is a little more difficult to find a place that will accomodate Dad, Mom, Grandma, Angel, brother Hudson, and soon newborn baby Haven (8/15) once Angel is discharged and also be 10 minutes drive from the hospital in case of emergency. Lots to take into consideration. We are prayerful...

Though we are thrilled about Angel's progress we are consistently reminded by the doctors that the first 3-5 days after surgery are considered the "honeymoon period". It is usually a week or so after surgery that the complications of rejection and infection begin to arise. We pray that Angel continues his "honeymoon" for a long time but also are aware it may not last forever.