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!