Bowel management week!

I don't have a ton of time to write a whole blog about this but I wanted to give everyone an update and ask for your prayers. 

We just got done with 2.5 hours worth of appointments.

The doctor thinks the Castile soap we are using for washouts is causing Greysen to vomit. This is good news and bad news. The good news is that we can maybe stop the vomiting. The bad news is we have to go back to using Gylcerin which I refer to as liquid gold because it's extremely expensive and isn't covered under insurance. Unfortunate but neccesary. 

The second problem is that despite several washouts per day (and for those wondering, washouts are enemas but I really just hate that word. Can you blame me?) Greysens bowels are not getting clean. The x-ray this morning showed he still had a lot of stool in there and we need this completely cleaned out so that the doctors can help start managing his accidents. It would be best if he could be completely cleaned out by today since we only have tomorrow and Wednesday left with the doctors. 

Another problem is Greysen's appetite. It has decreased significantly over the last few months and has pretty much gone to nothing since we got here. He hasn't eaten breakfast or lunch today and says he can't eat:( I don't know if it's because of the washouts and vomiting but I'm hoping it gets better...soon!

Despite the washouts Greysen is still having accidents. Not quite as bad as before but the goal is to stop all accidents. If we can get him cleaned out then the doctors can figure out what is causing the accidents and how to better treat them. It's all a trial and error process but being completely empty would eliminate some questions.

We met with Grey's surgeon on Friday and the great news is that he doesn't think Greysen has a stricture! That was our main concern. Praise God! He talked with us about our treatment plan and recommended we do the bowel management program for 10 months. This means a washout once a day for the next 10 months. I'm sure it will become normal for us but it will be an adjustment. It's about an hour process and has to be done at the same time every night. Next June we will come back and discuss his progress and they may give him Botox injections then if he is still having issues. In the meantime I am just going to be praying this works!

So that's all I have for you right now. We appreciate all your prayers and I hope this update gives you an idea of what to be praying for! Right now we are enjoying our time together in Denver but I am really missing Kyle, the kids, our new home and church family! If you feel up to it leave me a comment so I know who is reading and praying! Your support means the world to us!

Surprises...

Anytime we have made the trip to Denver Children's hospital I am always amazed at how much they give away to the kids and families. I can't even begin to name all the things Greysen got but I will try: handmade quilt, handmade fleece blanket, handmade pillow case, a joy jar filled with toys, Lego sets, toy truck, stuffed animals, ironman costume, transformers...seriously the list goes on. The even greater thing is that all of those items were donated by people. 

I love people that love to give. 

If you've ever stayed at a Ronald McDonald house you will appreciate people that give. 

If you've ever had a child in the hospital for a lengthy time you will appreciate people that give.

2 days ago I got a phone call from the hospital in Denver. The woman on the phone asked where we would be staying during Greysens week long treatment and I told her we would try to stay at the Ronald McDonald house. It's $25 per night and our insurance will cover $20 per night so that comes out to $5 per night out of our own pocket. Big spenders I know! The problem with the RM house is that you cannot make reservations but instead have to call the morning of the day you plan to get there and see if there are rooms available. If nothing is open then you are out of luck and can try again the next morning. 

The woman on the phone informed me not to worry about my lodging because the hospital has a donor that would like to pay for our hotel and anyone else in the bowel management program! She asked if a queen suite was ok and then made the reservation for me. I really couldn't believe what I was hearing! 

This is a HuGE blessing for Greysen and I! I had looked into staying at this hotel but knew there was no way we could afford It. We also will not need a vehicle now because we can walk right across the street to the hospital. It's also right next to panera where I will be eating dinner every night:) 

God is watching out for us...

Greysen went on his first plane ride today and loved it! At first they had put us in completely different rows which upset me at first. It was his first time flying and I wanted to be sitting next to him! Some wonderful man switched me seats so I could be next to my son:) On our second flight we had an aisle seat and a middle seat. Greysen wanted to be by the window but since the flight was completely full I knew it wouldn't be possible. Well, everyone got on the plane and guess which seat was the only open seat on the plane???

God is so good to us even in the little things. He uses people to bless others and gives us the desires of our heart, even if its asking for the window seat on a plane:) 

I hope that I can use what the Lord has given us to bless others in the same way I have been blessed by the people that give to The Denver Children's hospital. Please keep Greysen in your prayers this week as he begins the bowel management program tomorrow and has to endure some not fun things. I am praying for complete healing or at least an improvement in his healing from his last surgery and a better quality of life before he starts school. Thanks everyone for reading and keeping us in your thoughts! 

                        First flight!

So here's the deal...

Life is crazy right now. Crazy in a good way but none the less crazy. Right now our entire life is boxed up and ready to be moved in 2 days! In the midst of my husband changing jobs and moving we have to plan a trip to Denver. After a lot of thought we decided it would be best for Greysen and I to fly down this time around. I thought that would make things easier but nothing is easy when it comes to dealing with insurance. I called to be sure everything was pre-approved and Denver Children's assured me they would handle it. We'll I wanted to buy our plane tickets but couldn't because I wasn't 100% sure that Greysens treatment would be covered. I have been on the phone everyday with them for the last week because Denver would tell me one thing and the insurance would tell me the opposite. I was so frustrated and tired of being on the phone (I really dislike talking on the phone) especially when I had been on the phone cancelling and switching utilities, reserving a moving truck, making rent arrangements, the phone calls we're never ending! To make a long story short I finally got the approval for Greysens treatment and Greysen will get his first plane ride in just a few short weeks. It's a good thing i made the calls because Denver called me back to apologize and didn't realize our insurance worked differently. I was really stressed that his insurance wouldn't cover the week long program so I was trying to figure out how we were gonna pay for it, because insurance or not, he needed to go. I'm glad that's one less thing to worry about. Everything seems to be falling into place and we appreciate any and all prayers. Going back to Denver is going to be great for Greysen. He has  been having a tough time lately and I am noticing more and more the emotional affect it is having on him. He could really use some prayers right now especially as he transitions to a new city, new school, and new friends. The other day Greysen was having a rough time and with tears in his eyes asked me, "Why did God make me this way?" That's a tough question but I was immediately reminded about the blind man in John 9 where the disciples ask Jesus who sinned to make this man blind, him or his parents and Jesus responds with, "Neither this man nor his parents sinned. This happened so that the work of God might be displayed in his life." That is my prayer thru all of this that Greysen will use his experience and struggles with this rare disease so others may see the work of God thru him! I know that God has a very special future for our boy:)

The one minute bladder

In December of 2012, just 2 months after we took Greysen out of school, I noticed he was running to use the bathroom quite frequently. I started to wonder if maybe he had a bladder infection or a uti but he didn't have a fever or any other sysmptoms. You wouldn't know it by how much we visit the doctor now but I really don't take the kids to the doctor unless they have plenty of symptoms that warrant a trip there. I gave it a couple weeks but decided I better take him in. Our doctor wasn't available and the only other opening was with Doctor Jagodzinski whom we had never seen so I relunctantly made the appointment. We got to the doctor and I explained to the nurse that Greysen had been having frequent urination but no other symptoms. The doctor came in and examined him and said that his urine tested negative for any bacteria. She wasn't sure what was causing it but that sometimes little boys can have problems with bladder control. The thing was, Greysen had never had a problem with his bladder before. That was the part that DID work so I was actually concerned that out of no where he would use the bathroom, flush, then immediately go again. I even timed it once because I thought maybe I was crazy but nope, every 1-2 minutes he was going! I really liked this Dr. Jag because she was very thorough, didn't rush, and seemed like she actually cared. She asked if I had anymore concerns and I began to explain Greysens history of constipation. I told her that we had been trying the miralax and now that he was having bladder issues I felt like more investigating needed to be done. She felt on his tummy and could feel a large amount of stool and explained that maybe the constipation was now interferring with his bladder. I felt so bad for my boy. It seemed like his issues kept getting worse but I knew that now was the time to finally get to the bottom of this before he was in school. At this point I had had enough. I knew we needed an answer and that meant me being aggressive. Even though we had seen a specialist a few years back (remember the crazy bird lady??) she told me it was probably time to see one again. She explained that a new pediatric gastroenterologist had been in Billings 6 months and he was very good. I felt relieved. Finally, maybe someone will listen? She gave us the referral and the appointment was set for March. It was the longest 3 months of my life but it gave me time to write up Greysens history and get my questions written down. I was not willing to see a specialist again unless he actually listened to my concerns and acknowledged this was an issue bigger than constipation. I wasn't going to see a specialist again that had no plan of action and wasn't willing to do some homework to diagnose my son. We HAD to figure out what was wrong with Greysen...it just wasn't an option anymore.

Denver Bound...

We took Greysen to see Dr. Flass today and the good news is his stricture doesn't feel as tight as it was 2 months ago. The bad news? We don't know what is causing his incontinence. More bad news? This means a trip back to Denver:(

This week Greysen will do another Sitz Marker study to check his motilty. The test basically measures how fast your food is digested. This is done by swallowing several plastic shapes "markers" at the same time everyday for 3 days. On the 4th day, an x-ray is taken to determine where the markers are at in the colon and if they are moving thru at a normal pace. Its a pretty cool test plus Greysen gets to eat plastic shapes. Life doesn't get much better than that, right?! He did this test last year before he was diagnosed and the shapes that should have cleared out of his colon within 6 hours had barely moved anywhere after 4 days!!! It will be interesting to see how much better he does this time and, even if his motility is slow, I know it won't be as slow as last time!

Dr. Flass told us that even though Greysen has improved since having the Pull-thru surgery, he hasn't improved as much as he would have hoped. There isn't the technology here in Billings to be able to test the things that need to be tested so he is going to talk to Greysen’s surgeon in Denver and try to coordinate a post-op follow-up along with some other tests. He is also going to see if Greysen can get into the bowel management program. This is good news for us as I have been struggling with Greysen’s day to day issues in not knowing how to help him. A few options may be to place a cecostomy. This is a tube that is put in through the skin and goes into the intestines. It is basically a way to easily flush out the bowels everyday without having to use laxatives, enemas, etc. It’s more effective in keeping the bowels cleaned out and can help with incontinence. This would be a better option than having to go back to a colostomy. They may also use anorectal manometry to be sure his nerves and muscles are working correctly. Hopefully, I will hear back from Dr. Flass today after he talks with the doctors in Denver and we can see what they want us to do. So I guess for now we just wait until we know what the plan is and of course I will update you all once we know! We appreciate all your comments and encouragement on our blog. It’s great to know who is praying for us and thinking of us during this crazy time! As I’ve mentioned before Kyle is making a job change in July and will be the associate/family pastor at Big Timber evangelical!  We are SO excited about this new opportunity but it is a lot to think about selling our home, moving, and transitioning our family, all while dealing with Greysen’s health issues.

If you’d like to pray for us here are some specific requests:

·         That we would be able to get into Denver Children’s Hospital in June or July before Kyle starts his new job.

·         Pray that Greysen would not be anxious about the doctor’s visits or about the move.

·         That Doctors would be able to find the problem and get Greysen to a better  place of healing and recovery

·         That our house would sell fast so we don’t have to be dealing with a sale in the middle of going to Denver.

Kindergarten

In the summer of 2012 I took Greysen to his 5 year check up and wanted him to get his kindergarten shots because we were thinking of sending him to kindergarten. He is a July birthday so he would be a young 5 year old but we felt he was ready (besides the fact that he still could not poop on his own). I took him to the visit and explained to the doctor that he was still having issues. The doctor assured me that constipation in kids is very common and that he would eventually outgrow it despite the fact that we had been dealing with this for 5 years. The doctor explained to me that we needed to do a clean out at home and this would give his colon a "fresh" start and from there we would give him miralax everyday and get him on a good bathroom routine/schedule. The cleanout was supposed to go something like this: one dose of Ex-lax everyday until results. By day 3 I called the doctor because I was concerned that still nothing had come out and I wondered how long I was supposed to give him the ex-lax. The doctor said to just keep giving it to him until he pooped so I did. By day 7 I started to really worry because at this point I felt like I was poisoning my son. What goes in must come out right?! So where was it and why wasn't it coming out?! I remember asking Kyle several times, "how is it possible that a child can have 7 adult doses of ex-lax and still nothing is coming out??! Finally, we got him cleared after 8 days! We started the regimen of miralax and I was pleasantly surprised at how well it seemed to be working. I was also glad for a laxative that is safe and not absorbed into the body. You know the warnings on laxatives say do not use for more than 7 days? This apparently does not apply in Greysens case. Anyways, as long as we didn't miss a day he seemed to be staying very regular and it seemed like things were starting to get better. The only problem was that as soon as we missed one day of giving him the miralax we would be back to square one. This is the problem with short segment Hirschsprung's disease... it can be manageable at times but then at other times it can be a disaster. It's why I would call and schedule an appointment for him to see the doctor but then think he was getting better so I would cancel the appointment. The other problem was that we had very bad insurance. It was hard for me to keep an appointment that I knew I would have to pay $130 just for the doctor to tell me to go home and give him miralax or ex-lax. I can get that kind of advice on the internet for free! Most people will ask "Isn't your son's health worth any amount of money?" Had I known at the time that something was wrong with him I would say yes but at the time every doctors visit would end in the doctor telling me he was just constipated and that he would outgrow it. Its hard to convince a doctor that something isnt right with your child and I wasn't willing to keep paying them to do nothing. Finally, we were able to apply for healthy Montana kids which is an insurance for middle class families. The income limit for our family is $75,000 dollars in which my husband responds, " I will be happy the day we don't qualify because that means we are making at least $75,000". He is funny and even more funny because he knows that he is a pastor and you dont go into that kind of job for the money:) Anyways, after we got the insurance it only cost us $3 to see the doctor which to me didn't even seem fair. After paying $130 per visit $3 seemed like theft! I'm not sure if this was the right attitude but I started taking Greysen to the doctor a lot after that because I figured it was basically free and maybe if I took him enough they would finally do something! They kept us on the miralx regimen and said to come back in a few months if it wasn't better. Of course some weeks it was better and some weeks it wasn't so September came and we decided to send Greysen to Kindergarten.

We were already concerned about sending Greysen to Kindergarten because of his age but it concerned me even more that he was 5 years old and still could not poop on his own. For whatever reason in Billings, MT  "Red Shirting" is a common practice. I really didn't wanna wait another year to send Greysen. I assumed he would be a tad younger than some of the kids but I never imagined most of them would be 6, even 7 years old! Talk about red shirting to the extreme. I was a bit annoyed because while he was doing great for his age he was actually doing below average compared to the rest of his class.
You can't blame a 5 year old for not keeping up with 6-7 year olds! So after a month of school we decided (with many tears) that we would take him out and wait until the next year. Kyle and I both prayed about it and knew its what we needed to do. We felt very secure in our decision but it still didn't make it easy. I remember telling the Lord, "I know that one day we will look back and be glad we had the wisdom to make this decision." Little did I know that would only be 7 months later...

A More Recent Update

Hey everyone! I know that I have been blogging Greysens story from the beginning and I wanna do this so that others dealing with Hirschsprungs can follow and compare our story to theirs. Each case of hirscsprungs is unique to that individual but sometimes it is nice to read similar scenarios or to see that someone else has dealt with some of the same things. However, I thought I better give you all a more recent update!

Greysen is now 7 months post-op from his pull-thru surgery. While he is doing much better than he was before the surgery he is now dealing with a whole new set of issues. The misconception with having surgery is that he is fixed and does not have hirschsprungs disease. From the words of his specialist, "once hirschsprungs always hirschsprungs." He will never be cured and I have come to terms with this however there are things we can do and are currently trying to do to increase his quality of life.

About a month ago Greysen started physical therapy to help strengthen his pelvic floor. The specialist wanted to try this before sending us back down to Denver. Its a very specialized type of physical therapy, and while I feel it may help a little, I am not convinced this is the cure-all to his issues. After 6 years of not being able to use his bowel muscles correctly its inevitable that these muscles need to be re-trained and reconnect with his brain. Because his intestines could not move the waste through his body to his spinchter his body never had the urge to go. So basically his body has never been trained to hold OR release waste. Another issue that can cause this is called a stricture due to the surgery. The area where his colon was reattached can form scar tissue causing the hole to become to small for anything to pass OR it can cause tension in that area which in turn causes the spinchter muscle to tighten or release (spasm) which then can cause him to either have an  accident (release) or be unable to have a bowel movement (tighten).

7 months after surgery he should not be having accidents. It has been a very hard couple of months trying to decide where to go from here. He is almost 7 years old and the older he gets the more anxious he gets about these issues that he cannot control. I want for him to have a good childhood and I want him to be free of teasing or embarrassment. It is hard to see the time go by and to see no improvement. My heart hurts for him. I hurt for the times he may be embarrassed. I hurt for him feeling that these accidents are his fault. I want him to enjoy a childhood where he doesn't have to worry about such serious things. I'd love to send him to school or a friends house without explaining to them why he has a change of clothes and how to respond in case he does have an accident. I cry picturing him stuck in a bathroom not knowing what to do or who will know. Its an emotionally exhausting disease and I hate it.

We have an appointment next week with the specialist where hopefully we can get the ball rolling. Kyle and I will be requesting a referral back to Denver so that the surgeon can see Greysen and decide where to go from there. Its possible that Dr. Flass may be able to evaluate a possible stricture here in Billings but we will also be requesting that Greysen participates in Denver Children's hospital's bowel management program. It is the best in the country along with one in cincinatti and is used as a model to establish other bowel managment programs around the country. Our hope is that we can get all of this taken care of in July while Kyle is between jobs. In the meantime we are trying to sell our home as well! Transition is never easy for us let alone dealing with a child with "special needs". The one thing that keeps us strong is knowing that we are where God wants us and he is going to work out the details. Our hope is that by the beginning f the school year Greysen will have made a lot of progress and will be able to function like a normal 7 year old and be comfortable at his new school and meet new friends!

In the meantime, I will continue to pray for strength and for wisdom to raise our son in a way that makes him feel normal, loved, and accepted. We appreciate everyone that follows Greysens story and holds us up in prayer!