A 6 week update...

It continues to blow me away how fast a week goes by... Our family has now been home almost 5 months, which equals the time we were away from home after transplant. Being home has been really good for everyone. Angel has settled into a routine and really enjoys the time interacting, playing and just being a kid. Our weekdays typically are busy with therapies, testing, medical regiments, organizing and education. Despite our business we are definitely enjoying our time together. Over the last six weeks Angel has continued to make progress. Though even still at this point his over all care is more than it ever was before transplant. He is almost off of IV fluids at night. He still requires IV fluid for the electrolytes that his new intestines are unable to absorb at this time. He is also on formula feeds 20 hours a day, as he receives 105ml/hr (about 3.5oz/ hr) of formula. One thing that continues to be a topic of discussion for both Angel and Hudson is the abdominal wound. Angel continues to have dressing changes and it appears that the wound will be around for a few more months. The hope was that by summer the wound would be closed and Angel's central line would be removed. But at this point it may be a little longer than we had hoped. Our goal is that by the time Angel and Hudson start school in the fall Angel will be wound and central line free. This will be a huge accomplishment as Angel has always had a central line, literal since birth he has always had a line. The day the line comes out will be a monumental day and everyday without it will be soo incredibly surreal.
We as a family have had some high points this last six weeks. We celebrated Easter with both sides of the family. The weather was amazing and boys really enjoyed doing an egg hunt and playing with cousins. Another highlight over these last few weeks was Disneyland. We had a friend from out of state who was going to be at Disneyland and we couldn't resist the invitation. Angel wore a mask the entire day without a complaint, both Hudson and Angel had a great time. At the end of they day they both picked out outfits from the Star Wars movie and put them on before we left the park it was soo wonderful to see their excitement.
Currently our biggest challenge is to keep Angel out of trouble and maintain steady progress. The current buzz over the "swine flu" has definitely got the attention of many, including us. But it is weirdly familiar reading articles and watching the news. Because the reality is this is how we see the general public as a threat for Angel on a daily basis. The potential problems for Angel when he gets sick can be catastrophic for him. Though like the "swine flu" most cases are minor at this point but there are a few deadly cases. An infection on any level for Angel can be minor but also can potentially cause a lot of problems for him. So being in isolation or wearing a mask in public has been common place for him. So seeing on the news people all over the world trying to protect themselves with masked, isolation and cancelled public appearances is just all too familiar. Such a strange reality for us.
I will end with this post with the news that Angel's donor family emailed us this week. We replied to the letter we received from them in November and they JUST received it. The story is nothing short of yet ANOTHER miracle of God working in Angel's amazing life. It is much too poignant and important to share at the end of a post like this so I promise to come back and devote an entire post to this story. Suffice it to say it has been an emotional week for us getting to know them and feeling the gravity of having another precious child's death giving life to our child.

Thank you all for your continued love and support. We are here as a family because of the many prayers and helping hands that have intervened over these last few months. We as a family are forever grateful.

Blessing to all...

A Mothers Perspective...

This is a post by Sarah, it is soo sweet and soo right on. I couldn't do this month in review any better... Thank you my love.

People often ask "How is Angel doing??" Whether it be someone who just learned about Angel and his life/transplant or someone who maybe hasn't seen us or heard from us in a while... its always interesting to answer.

"He is doing really well right now" tends to be my answer. But what does "really well" REALLY mean? Its all in the perspective, I guess. He is not in pain. He is not in liver failure. He is not dying. And he is really, really happy. That is well. But if you compare that to a "normal" child's life it is still far from "well". (Not that we are in the habit of comparing, of course!)

Angel is on 24 hours of drip feeds at 90cc an hour right now. He loses the 2 hours off a day because, at night, he is backing up and "venting" about 300cc. (At night his tummy just doesn't pass the formula through easily so we have a special bag that anything that's not moving can back up in to.) He is only getting about 15-30min a day unhooked. He is also still on 12 hours of IV fluids a night. Its just hydration that a newly transplanted bowel cannot absorb from his feeds/drinking. He is doing Occupational Therapy 2x a week and doing REALLY well (there's that phrase again!) and making strides and doing better eating. Of course, "good eating" for him is eating 1/4 a piece of bread - plain - in one sitting. :)

And we are still in what I call "quasi-isolation". We do not go anywhere that has large groups of people - especially children. If we have to go anywhere public he wears a mask. Any contact we have with others is "pre-screened" to the best of our ability to make sure they aren't sick or haven't been exposed recently to someone ill. It is an odd life to live. Its not completely debilitating but very restricting and... isolating. :) Angel's Neupogen injections really help keep his White Count up and his body able to fight off minor viruses and such... But the reality remains that if he gets sick the risk is MUCH higher that his body's immune system getting ramped up to fight the virus or whatever could cause it to then reject the organs.

All that to say, however... we are learning to love our new normal. We accept that this is our life and are doing our very best to make the best of it. To appreciate every joy and good thing that comes our way. We have more hope and optimism than we have in a very, very long time. Angel has had a LONG stretch of "doing really well" and we are ecstatic. As I rocked Haven in the middle of the night the other night I began to ponder... SHOULD we be a little more guarded? SHOULD we be reminding ourselves that there are still bumps that are inevitable? SHOULD we recognize that there is STILL only a 50% long term survival rate for this transplant??? I decided no. No. It is time to live. It is time to drink up all the goodness of these days.

A year ago I didn't know if Angel would make it to summer 2009. Today I bought him new swim trunks. Almost a year ago I cried as we made a little visit to his class the last day of school not knowing if he would ever go to school again. We are making plans for a vacation. We are talking about "when he gets his central line out and can swim ANY time he wants"... I am teary and choked up as I write this. Its totally time to just live in the moment. And it is SO SO good. Last night Angel was up at midnight going to the bathroom and I tucked him back in to bed. He wanted to snuggle (which is unusual... but happens more often when he DOESN'T want to do something - like go back to bed ;) ). We got into a conversation about transplant. I said "Angel... I'm glad that you had a transplant. I know it was hard. And I know sometimes it still is. But do you know that if you didn't have it you might not have been alive today?" He said "I know. Mama? You know what I think? I think that I have been dreaming. I think that since that night that you guys woke me up [referring to the night we got the call for transplant] that I've been dreaming all this time." Huh.

One of the things that Angel has been dealing with post-transplant is ingrown toenails. Ohhhhh they are the BAIN of his existence! We have been soaking them in vinegar and salt water for months... And he hates it so much. Finally we put him on antibiotics for it and it got a little better, but were still bad. So this week we went in to the Pediatrician's office to have BOTH big toes worked on. He had to have 2 numbing injections on each big toe (4 pokes) and it was very traumatic for him. (I guess a lot of adults say that the whole thing is VERY painful!) But once the numbing set in he was totally fine. And.... he has had NO pain since! Unbelievable. In fact, last night he said in his prayer "I am SO tankful dat dose tings [referring to toenails] are FINALLY gone!" He got to go to Target afterwards and pick out a well deserved prize. Can you guess what he picked? Superhero toys, of course! (Its either going to be that or video games!)


Thank you for still checking in on us... We will never stop being grateful for each of you who held us up by reading, keeping up, and supporting us through these times!

Hudson quote this week: "Mama, when I love someone... my heart does fireworks" (followed by exploding noises)

A Month in Review...

Another month has come and gone... It is so hard for me to believe that the time is going by soo fast. This month we have had some momentous days and also days of keeping things contained and on the simple but busy path of recovery. Angel was taken off TPN (the IV nutrition he has been on since birth) last week and is now 100% dependent on his new intestine for nutrition. He still requires 22hrs of continuous formula feeds that run at about 3 oz. of formula an hour. He also requires 10 hrs a day of IV hydration fluid that contains electrolytes. This maintains his hydration status and balances any electrolyte abnormalities. I draw Angel's labs a couple times per week and make changes to his medications and electrolytes as needed based on the lab results. He was taken off TPN a little over a week ago because his potassium was too high and the TPN contains potassium... the doctors then decided it was enough of TPN and time to stick to the formula and hydration regiment. We hardly noticed this momentous point. But when we looked back after a couple of days we realized ...Wow... Angel's off and staying off TPN... How amazing! We praise God for this vista point on the road to recovery. Looking back to all those years on TPN, the answer to short bowel syndrome is also the cause of liver failure and in the end the result was transplant. We have traded problems with taking on transplant but have gained more time and invested in Angel's future in the process.
This month Angel has shown great strides in taking on his new life post transplant. He is playful and fun to be around. He is more engaging, gives of himself and looks out for others more so than he had in the past. This is the Angel of old but a more mature Angel of old. He has also begun school and occupation therapy. The school district sends out a teacher to our house two to three times a week and has reintroduced him to reading, writing and math. More like a school tutor but none the less it's building on his educational foundation. Occupational therapy is twice a week and Angel works on feeding. Taking on table foods and tolerating new types and textures. We have discovered that the more Angel eats the worse his nausea and vomiting get. This doesn't help reinforce the goal to be completely dependent on table foods in the future. But the hope is as time goes on and as therapy continues Angel will make progress and this will get better.
Also last month I returned to work. I have worked out a schedule where I go 2-3 days a week and will add more days as I am able. This has been great for me to get back into the swing of things in the anesthesia world. But it is difficult to leave behind soo much for Sarah to juggle. Amazingly, but not surprising, Sarah has done a beautiful job on the days that I am at work. I know the routine is demanding but as long as Angel is on the predictable path there is little guess work and a routine can be managed. Which Sarah does soo well!
As a family we have been looking past the here and now moment and have begun to look to the future for new hopes and dreams. We feel as though we are past the first chapter of transplant and into a new chapter full of cautious optimism. The boys have been playing really well together and with daily walks and outside play the normalcy is blossoming. Hudson and Angel are beginning to really see each other as friends and play partners. This is soo fun to watch as they have learned to help each other and spur each other on to make believe playing, adventures and just pure fun.
Angel's favorite thing continues to be his Make A Wish video room. He is enjoying the LEGO version adventure games: Star Wars, Indiana Jones and Batman. These games require problem solving, deductive learning and creative thinking. He has impressed us on multiple occasions where it seems not to make sense to us but he'll say just "follow me" and will solve the problem on his own as we play together. It's a lot of fun to watch him think through these problems and feel soo proud to accomplish the challenges.
Haven now is almost 6 months old. She is getting to be a bigger part in Angel's life everyday. She smiles more for him than almost anyone else, it's soo great to see this bond developing. He seems soo willing to cheer her up or just sit and play with her. For 10-15 minutes he will interact and entertain her. To hear her laugh and see both of them smiling is a lot of fun to watch.
Though all these things continue to be getting better, we still are on watch for any trouble. Unfortunately today Angel has been not feeling his best. He has thrown up every morning the last 4 days and today asked if he could just lay on the couch and watch TV all day. This is not the normal response for Angel as he is usually running around and much more playful. We will continue to keep an eye on him and hope and pray that this is a temporary bug and not something brewing that is more serious. But this is the journey, this is the ups and downs and the U-turns and open roads. As a family we have come together during this time and have grown closer to each other. We rely on each other and depend on each other, it's a team effort and one that at times needs extra outside reinforcements. Thanks to our friends and family we are able to get through the rough patches and thrive in the moments that are more peaceful.
I read something this week that made me think of this time in our lives. Things have been pretty serious over the last few years. But seriousness is not the opposite of joy but of superficiality. Our lives have been very serious , but seriousness can coexist with being fun-loving, lightheartedness, music, whimsical moments and love. But the other side of serious is dedication, unbending desires and a relentlessness that can be all consuming. But what I have been reading has encouraged me that this is also how our walk is as Christians. It is the seriousness in life that brings out the truth and reality about life and the Bible. It is God's word and His calling that has turned our lives into what it is and has maintained us during these times.
We continue to thank God for his blessing over our lives and our children's lives. We continue to seek Him and He continues to uphold us....

Thank you all for your continued love and support. As God upholds us, I pray that He continues to bless you and your family.

Wow has it really been a month...

Things with Angel are continuing... the roller coaster of events has not slowed down being here at home. The goal was to be off IV nutrition by the end of December and be completely dependent on formula feeds. But over the last few weeks Angel has had some set backs, he has had 2 bouts of an intestinal infection. Each time it presented Angel had major symptoms of nausea, vomiting and abdominal distention. These issues pose problems on many levels, as infection can lead down the road to rejection. The medical staff has been aggressive in investigating the cause of the symptoms and each time we have been relieved to have a positive results on the infection. But the gauntlet of test has been taxing as well as Angel having to endure the symptoms of the infection until it is under control. Angel has had multiple visits to the doctor and multiple testing but we have been able to manage everything from home. Even having his last infection which was right over Christmas. The medical staff was gracious in allowing us as a family to be together and I was able to manage a difficult situation at home. This made our home even more of a hospital but keeping us together was so special. Our circumstances didn't allow for a big family Christmas as we just stayed home together. But again being together has been what our family unit has needed.
These last six months has been soo incredible. The toll our family has taken has been intense. There has been big changes and subtle changes but all in all we have had to adapt. Angel currently is doing pretty well though we are still having some issues with nausea, vomiting and abdominal distension. His last infection is being treated currently for another week and we will go to the hospital on Friday to see the medical staff and follow up on everything. December was an extremely busy month and January has not been much quieter.
Our hope is that we adapt and adjust but get to a point that settles and allows for some normalcy. Angel has been out of school since last year and we have not been able to get any therapies for him since being discharged from the hospital. We are hopeful that with some stability we will begin to build a routine and start home hospital education and therapies. Angel's immune system is still very compromise and the medical staff has ordered for us to keep Angel out of the general public as it pertains to education and other major events.
We as a family are hopeful that 2009 will be more calm than 2008. As we had prayed for peace in 2008 and realized we received what we asked for .... but more of a peace that passes all understanding is more of what we received. Looking ahead has been challenging, it is difficult to see past the current week but we are confident that the Lord will continue to be faithful. We will be on our knees this year more than ever as we are by faith moving ahead one day at a time.

Thank you all for your support. I will continue to update this blog and when things get quiet and when there is no update pray for us that things are really good and not the other way around... we are looking forward to having less valleys ahead and enjoying more peak-like experiences.

Happy New Year to all!

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. =)