Monday, April 27, 2009

Technical difficulties - stay posted

Ok, I was going to post a radio clip and some pictures of our day Friday but am going to have to wait until I can either get home for a minute or two, or get to a different computer and try again. If I get a chance to do this while here, you will hear the story - if not, it won't be long after we get home. Sorry for the delay!

Saturday, April 25, 2009

My bubbling river

I have often likened my little Drew to a sunbeam and if he is that, then Peyton is a river. He is like a river that meanders slowly and gently at one moment and at the next is roaring over the rocks, splashing everywhere and getting everything in its path wet. It shoots over falls without thinking twice, easily cuts through new territory out of necessity, and moves around rocks, not stopping to think about the size of the obstacle encountered. It sprays into the air sometimes, mixes with the sun to create beauty everywhere, and brings life to the surrounding environment, not intentionally, but by proximity. It may be cold and deep, still and quiet, loud and abrupt, or warm and gentle. It doesn't do anything to attract attention intentionally, but something about it draws people to watch it.

Peyton has brought us smiles this week, and pride, as he deals so bravely with his lot. He has also caused me frustration and confusion, if I am completely honest. He does not (DOES NOT!!!) like the NG and oxygen tubes they put in his nose after surgery. Between the NG tube and the pain meds, he has challenged all of my mothering skills and then some for the last 5 days. Friday he was crying about something, which brought me in closer to investigate. He responded, "I don't need you, I need NG out!" If you came to visit, you might have thought he had surgery on his nose instead of his stomach by his indications of what was bothering him. I tried every trick in the book to distract him, and more to comfort him, all unsuccessfully. I think the nurses are never sure what mood they will encounter when they venture in! He has perfect manners some days, but is more than prickly others. If you ask him how he's doing if he is experiencing any discomfort at all he may bite too! I guess I might ask people to allow me a little latitude too if I had gone through half as much, but he certainly proves how much a situation like this can impact all elements of your being.

We are hopeful that Peyton will be discharged later this week, if everything continues to mend as well as it has been. Since he got the NG tube out on Friday, he has done a 180 in both personality and recovery. He was so ginger with his movements because he didn't want to bump his NG tube that he wasn't pushing himself at all. It might have been a mixed blessing for his recovery. A few of the nurses who were on last week but had the weekend off came by to see him today and were so surprised at how well he is doing. We missed the doctor this morning, but I'm sure if he knew what Peyton was up to today he would be thinking of kicking us out of here. We just need to check on a few more things and I am not eager to rush things at this point. Peyton has an area that is swollen around the incision, but it looks like it might just be how they sewed things up - none of the nurses have been too worried about it. Hopefully it won't slow our discharge date down. He needs to be able to tolerate a full diet too, before we can leave. His tummy bothered him anytime he ate today, so hopefully that is just due to his tummy learning what to do with food again. I can't imagine the shock to the gut from having everything taken out, pieces removed and then everything put back in - that just sounds wrong and definitely something that I would think would take more than a week to recover from but kids can't stand to be down long! He was already trying to hop on one foot this afternoon (OUCH!), let his sneezes out gingerly (he wouldn't let himself sneeze until today) and proving his speed had not been affected. I was talking with a friend in the hall and Peyton excused himself for a moment. He had been running in the entry hallway for the unit (the only somewhat safe place to expend that type of energy indoors) and decided his reindeer slippers were too slow. He was back a minute or two later with his running shoes on and then had to put them to work! You would not know he was laid up a couple days ago! Amazing.

Now it's time for a quiet moment or two before bed to unwind. Thanks for following and I am going to work on that story shortly...

Abby's Special Day

Today is a special day for a dear little friend of ours and I wanted to share her day with you. Many of you have been praying for Abby, a little two year old with the same disease as Drew. Her Mommy and Daddy are working hard to make it possible for her to stay at home and that is the goal of this special day for Abby. God has blessed my life with the friendship of her mother, Jen, and Abby's smiles often remind me of Drew.
They are going to have a fundraiser for Abby tonight in Calgary, down south of the city at the Deer Run Community Centre. Everyone is welcome. If you see this before tonight and wish to join us, please do! I have included a link to the information about the fundraiser, that includes directions if you decide to come. I will be there and would love to see any who can come!

There will be an update about Peyton tomorrow. He is doing well, but is very sore right now. We have the most wonderful story to tell as well! God blesses our family in so many ways and with so many wonderful people!!! I am so glad He has opened so many doors to our family, and we are thankful for all the prayers for peace and comfort.

Please pray that Abby's fundraiser will be a success and that her parents will be surprised at the outcome!

Here are the links to information about Abby's special day (and some great pictures of this adorable little lady!).

Tuesday, April 21, 2009

Peyton's intestines are about 7 inches shorter...

What a way to start a post. I never would have imagined this header on any post of mine in my wildest dreams (or nightmares). Peyton is back from the operating room and we are excited, if you can use that word in this situation. The surgeons told us his surgery was a success, and though it is too early to tell if this will be the "end of the story," we are hopeful that it will be. The last two weeks have been an interesting ride with him. To explain why though, I have to summarize the whole process - bear with me.

Peyton started having tummy pain Tuesday, January 20. His appendix was hiding on all ultrasounds and x-rays so it burst unknowingly sometime before Sunday, January 25. The doctors now think it had been ruptured for quite a while, considering the damage that was done. Peyton seemed to recover alright from that incident but shortly before our intended discharge date he started having tummy pain again. In spite of preventative action to alleviate a bowel obstruction, he ended up with a full obstruction that had to be managed with surgery. On Friday, February 6th, he underwent bowel surgery to free up any adhesions and investigate why he had obstructed. We quickly learned that adhesions can be quite problematic and that they are places where inflammation has caused the bowels to become raw to the point that when they are healing, they adhere to something they shouldn't (best example - have you ever cut your hand and had a flap of skin that you pressed back down and it grew back together? Similar effect inside the stomach- an injured piece will stick to anything close). These can cause obstructions, as can scar tissue, so we didn't know what might be causing the problem for sure. When they went in, the surgeons found that he had adhesions, but there was a more likely culprit as well - he had 3 holes in his bowels from the afore-mentioned damage. These caused more abscesses, thus, more inflammation, and of course, more possibility for additional adhesions. Oh brother. Peyton recovered from this surgery quickly and we made discharge in under 3 weeks - for a grand total of a 5 week stay. Since that point, he has had tummy pain almost every day, for a minimum of 1/2 hour and up to a couple days in duration. He has had 4 admissions over the last 8 weeks, to try and manage the pain and ensure he doesn't go to a complete obstruction (he has been admitted for a partial obstruction each time). We were beginning to think it was going to be a way of life, or that the healing process for Peyton was fraught with more than the average difficulty and could last quite a bit longer than usual. Even the doctors were not sure what to make of his tummy.

All of the radiation variations done on his tummy (x-ray, ultrasound, CT-scans, etc.) suggested he had a partial obstruction, but the radiologist reports were inconclusive. Our surgeon said there was a questionable piece of bowel that might be causing the problems, but he said it might just need time to heal. It looked like there might be an area where scar tissue was not healing right, causing a tightening/thickening of the bowel.

A week and a half ago on Wednesday, Peyton started having more tummy pain again and by Friday (with constant cramping) we were back for the 5th admission. This time the CT-scan showed that same spot to be a possible culprit to all eyes - the bowels were distended on one side (the small intestines looked like large intestines) and collapsed on the other side. The surgeon came by and gave us our choices (I said I didn't want to make any more choices of this magnitude...). Choice 1) Take Peyton home and continue dealing with the tummy pain as best we could until he healed or until he fully obstructed. Choice 2) Let the surgeons inside Peyton's tummy to see what they could do. We talked with another surgeon who has been so helpful, to get a second opinion. She agreed. Groan. Sigh. Pause. Think. Pray. Cry. Nod. Act... don't think.

Last Wednesday we decided to let them operate. We set a date for this Tuesday.

The goal: free up any adhesions that may be causing a kink in the bowels, check for areas of scar tissue that might be contributing to the obstructions and investigate for any other possible causes. They told us going in that they may have to take a piece of bowel out if scar tissue had caused damage, and that, worse-case scenario, they might have to do a temporary ostomy (bring the damaged pieces of bowel to the surface until they healed). We were hoping the problem would just be some rogue adhesions and that Peyton would not lose any of his intestinal length, but they didn't think they would need to remove that much if they needed to.

Jordan and I were placing bets last night as to what Peyton would say when he woke up this morning - I think I won. First words out of his mouth, "Mommy, is this tomorrow?" We spent the next hour discussing whether or not today was tomorrow and where Tuesday fell in the grand scheme of things. We came to the conclusion that today was Tuesday, that he wanted to have his surgery tomorrow, and that today wasn't tomorrow. After that, he informed me that he didn't want an operation, but that surgery would be ok. We talked about that for the next hour in between conversations about why he couldn't have food. I exhausted my distraction techniques quickly in an attempt to divert conversation! All things considered, Peyton did amazingly well, and he was so brave as he went off to surgery. You would have thought he was going for a haircut. As he laid on the operating table, he put his arms behind his head like he was laying on the beach and took the "gas mask" without batting an eye.

Peyton went in at 11:20 a.m. and was out of surgery at 3:15 p.m. He travelled from the OR to the recovery room then where he charmed the nurses with his less than friendly smiles for the next 3 hours while they tried to manage his pain. That proved to be the most difficult part of the process and we are still working on that one.

The surgeons came by and told us they were very happy about how the surgery went. One of the surgeons was fairly bubbling with optimism and excitement over how it had gone. It rubbed off and Jordan and I have been in very good spirits this afternoon and evening, in spite of the deferred pain over Peyton's discomfort. They said there was no question as to what had been causing the problem when they went in. There were two places where scar tissue had tightened the bowel to the point that very little could get through. In one of these spots, there was only about a small pinkie's worth of space for things to pass through! She didn't know how he had lasted this long! It was such a relief to hear that we had made the right decision. We had been praying for peace over our decision and felt like we were making the right one, but how good can one really feel about turning your child over for surgery, when they seem to be healthy??!!! I can't begin to tell you what it felt like when we heard that Peyton would have either had significant long term problems or more likely emergency surgery within the next few weeks if we had waited. He should have a much better recovery considering his body was strong and fairly healthy going into surgery.

Peyton is not quite himself right now, as you can easily imagine. It's debatable whether he likes the catheter or the NG tube less. He hasn't noticed the central IV line in his chest yet and has already resigned himself to deal with the IV in his right hand, but he hasn't said a word about it - he just waves the cords around until he gets them where he wants them. The five inch incision on his tummy overtook an existing scar (for the third time) so he will be able to get used to that, but it's pretty sore right now. He did give us a smile tonight though and actually thanked me for something (we picked the right mix of pain meds this time I think!!!). I am hopeful that he will be feeling better tomorrow.

Thank you for all your prayers - we all had a surreal sense of peace and contentment with the situation today and that is the only explanation I can find. I will try to describe the feeling in a later post. We have been through many memories today too, that I am both thankful for and wistful about. Please continue in prayer for our family as we journey through this and pray specifically that no more problematic adhesions will form, and that the scar tissue around the two resections will heal very well. I have one more request - my sister-in-law (Nicola) had a beautiful baby girl last week (Lyla Claire) and Lyla needs prayers that she will have the energy to eat and to clear her system of any jaundice. Please pray that God will bless Nicola with peace as well. Thank you again from the bottom of my heart!!!

Sunday, April 19, 2009

My dear son Peyton

Oh how he makes us smile!

Peyton found out he was having surgery on accident, but it has actually worked out much better than we expected.  He overheard a conversation between a doctor and one of us about it Friday, and he didn't stop to ask questions at the time but a little later in the day he was having more tummy pains and asked Jordan about the surgery.  Jordan explained we were going to do it in the hopes that it would help him not to have any more of those pains.  Peyton proceeded to ask how long he had to wait until Tuesday.  Strangely, he seemed to be looking forward to it, and to the thought of not having any more tummy pains.  Perhaps that is an indication of how much his tummy has been bothering him, even though he tries to hide the effect.  He has been telling a few family friends that he is going in Tuesday, but without emotion every time.  I was beginning to wonder if it was bothering him at all and then we had 5 second conversation that revealed it all tonight.  He brought up the topic on the way home from Grammy and Papa's tonight and we asked if he was excited or scared, to which he responded that he was scared.  He said he was scared of the pokes and of them cutting him when he was awake.  We tried to explain that he would be asleep, but I'm not sure that helped.  He then asked how many days away Tuesday was and we said, "Two."  His response was classic, "YOU'RE KIDDING ME!"  It took Jordan and I by surprise so quickly that all we could do was laugh.  Poor Peyton - baring his soul and finally letting us in only to get a response like that.  I would have been surprised though if anyone listening could respond any differently!  It was a good diversion, but he was quickly back to discussing the days of the week and trying to convince us that Tuesday no longer comes after Monday.  I don't think the order has changed, but if his attempt at persuasion had any affect, your days might be a little out of order this week!  We will try to keep you all posted as we navigate the days this week.  Thank you for your prayers for our family!

Friday, April 17, 2009

Apology for not writing sooner... complicated!

Here I am apologizing once again.  I cannot afford the time to write a longer post right now, but wanted to let everyone know why we have not yet updated the blog with our most recent information.  
Peyton is back in the hospital and has been for over a week now.  He will be undergoing surgery on Tuesday next week (April 21).  He is most likely going to have a piece of bowel removed.  I will post more on that when I get a chance to sit here for more than a minute.  We are doing alright and Peyton is upbeat right now, but please don't tell him he's going to have surgery - we haven't crossed that bridge yet - gotta find the directions for that!  

Thursday, April 2, 2009

too tired to write...

We are doing alright - actually, better than I expected, but my brain is overwhelmed tonight so I will try to update you all later.  Thanks for your prayers - please continue.  Some days the information, or lack thereof, is more than I think I can bear.  I often think it would be so much easier to just miss Drew and not to have to deal with all these other things.  I am sure that what doesn't break me will make me stronger, but I'm not sure the timeframe on that!

Thanks again to everyone reading - your support is invaluable.

Wednesday, April 1, 2009

Site under construction...

By the way, you may have noticed I have been changing things around a bit with the blog... but have not done it well.  That would come from having only enough time to sit down and start playing, but not enough to complete the job.  We are hoping to get a website up and running in the near future that will contain a link to this blog, information on a fundraiser we are having in Drew's honor this summer, information about mitochondrial diseases, and a few other things.  I will make sure to keep you posted.  In the meantime, please excuse the appearance of this blog and while I am apologizing, I will also apologize that the music for Drew's video doesn't seem to be working.  We are working on that.  It will be available on his website soon hopefully if we don't end up getting it working again here.  I wish I was an expert at this computer stuff, but I would still have to classify myself as a novice!  I still feel like the computer is trying to outsmart me and has a life of it's own!

What do I say this time?

For those of you wondering why we haven't been returning phone calls or emails over the last few days, you can imagine why and you would probably be right.  

We made another trip to the ACH for Peyton over the weekend.  He landed in the hospital on Saturday morning much to his chagrin, but it was a short stay fortunately.  After some bowel rest and some TLC he was discharged again yesterday afternoon.  He has picked back up where he left off, hardly missing a beat, but there is an undercurrent of anger that he seems to have no control over his health!  He is a bit more volatile the last couple days, and has been testing me, all the while apparently trying to remind himself that everything is ok in spite of what keeps happening.  I can't imagine what must be going on in his little mind.

I have been writing a post in my mind for a long time to fill you all in on two things: 1 - what we were told by the genetics counselor, and 2 - what it has been like to be in the hospital with Peyton.  I cannot find the right words for either, which may provide you with a clue as to the impact of both on my being.  There is little that leaves me without words, but both of these have left my mind in a whirl, with no apparent way to bring it to resolution.  

The reason I am reminded that I have yet to post these thoughts is that we meet yet again with the genetics specialist tomorrow afternoon.  I want him to say everything will be ok and that what happened to Drew was a fluke, but I know better.  I want him to be able to say that they have found an incredible cure and that no other children will ever die from this horrible disease again, but I know this is not the time he will say that.  I only know that this meeting will remind us that Drew is gone and that there is nothing we can do to bring him back.  It will remind me that I want to make sure others don't have to hurt the same way we do, and that I need to find a way to help others get through their experiences.  And it will remind me yet again of God's role in my life and that He will never abandon me.  How many times I have wondered what it would be like to be able to watch my little Drew play with his big brother and what he would be doing now, but I always find myself returning to reality with both a sigh and with thankfulness that I had the privilege of knowing him.  I love you forever Drew.