May 14th

2008

Today was not May 14th, but it might as well have been.  I am sitting here in Drew's room where our computer now is, along with many of Drew's things, and where his crib was last year at this time.  At this time last year, on Wednesday night, Drew was sleeping peacefully (I hope) in his crib, and Jordan, Peyton and I were sound asleep too.  I would have just finished his last feeding of the night, rocking him close in the rocking chair and loving the silence and comfort of that last feeding.  I would have just put him down, snuggled up with his special blanket that he always wound his fingers through and with his little bear next to his face where he inevitably ended up putting it.  I know I was only the distance of 4 inches of wall away from him, but from this vantage point, it was way too far.  I wish I had been in here watching him, holding him, near him, as if somehow I could have prevented him from having that first seizure.  We were sound asleep... completely unaware of how soon our life would change.  

On the Wednesday of this week last year, Peyton, Drew and I went out to the Zorn's ranch with the Mom's and Tot's group from our church for a hay ride and a day with the animals.  We went with great anticipation and I'm sure a little chaos getting out the door!  It was a spectacular spring day, and I remember carrying Drew around in the Baby Bjorn for a good portion of the day, trying to protect him from the sun while trying to keep up with Peyton.  Peyton was in his glory, feeding chickens and gathering eggs, riding a horse, playing in the hay, climbing on tractors, and running around unfettered in the warm spring air of the countryside.  Drew seemed to be enjoying himself too, smiling lots, and content to be carried around and to be part of things.  He spent quite a lot of the afternoon in the laps of special friends who felt it no burden at all to give some extra cuddles.  The only strange thing about the afternoon was that he didn't seem to want to eat, and though he had been in the heat of the day, he didn't seem to want to drink much either.  After shedding a little worry, I gave up fighting on that and wrote it off as an issue of too much distraction, that could be overcome once we got home.  

When we got home, I'm sure I fed the boys dinner, but I don't remember much of that part of the day.  I do remember getting them ready for bed, and listening to Daddy read to Peyton while I read and sang to Drew.  I tried to put him to bed but he didn't want to settle.  I picked him up a couple times, cuddled him, tried to feed him again in case he was still hungry, and then put him back to bed.  The same thing repeated a couple times and then he finally settled to sleep.  I thought it was attributable to being overstimulated all day long.  (Was I oblivious?  I know the logical answer to that, but can't help but ask.)  Jordan and I came in to look at and wonder over him before we went to bed, as we liked to do every night with both boys.  I remember looking at him, so peaceful, and feeling so content, so blessed, and so excited about the future.  It wasn't long after that he woke up for a midnight snack and I remember holding him, both of us barely awake, but aware of the comfort of each other's presence.  I remember thinking over the day and planning for the next day as I fed him, anticipating the adventures the next day would bring.  I remember holding him close to my chest, head looking over my shoulder as I patted his back, and I can still feel that feeling of having him heart to heart.  Then off to bed again.  Separation.  That feels like a lifetime ago, and like a mistake I wish I could take back.  It was at that point that I said goodbye to the dream of the Drew I knew to that point.  Not to Drew himself, because I would never take back last summer, but to what I hoped for him and what I dreamed of about him.  

1:15 a.m. Drew woke up crying strangely, in some kind of discomfort.  The cry was not one of hunger or the desire to be cuddled.  It seemed that he might have been teething all day so I thought that was what it was and decided to go give him some Tylenol to see if that would help settle him.  I have gone over that scene a hundred times in my head, sad at how poorly I handled it - how unobservant I was to what was really happening.  I didn't realize he was having a seizure until I tried to give him his pacifier back in hopes of not disturbing him too much by picking him up or turning a light on, and he couldn't keep it in his mouth.  I tried again.  He still couldn't keep it in.  At that point, I was fully awake and instantly alert - I turned the light on low to check him.  He was shaking in his crib, helplessly flailing about, with a look of what might have been confusion in his eyes.  Shock.  Act.  Move.  Think.  Go!  I picked him up and took him into our bedroom, trying not to wake Peyton up by yelling at Jordan, but wanting to scream at the top of my lungs for help.  I put him on our bed and turned the lamp on, waking Jordan up.  I remember thinking, "I never imagined calling 911.  I guess this would be the time to do that.  All those years of thinking those are the numbers you never accidentally want to hit - overwritten in less than a moment."  Drew lay there, still shaking, looking to the left, and if I didn't know better I would think his eyes were saying, "Please help me."  

The paramedics were here in less than 5 minutes.  They assessed him, gave him medication and rushed him out the door.   I was in the front seat of the ambulance as it whisked my baby to what I hoped would be help that could fix the problem.  I remember sitting in the front, watching the trinket dangle from the rear view mirror, joking nervously with the driver (what was I thinking?  Shock does strange things).  When we got to ACH, Drew was swarmed with a team of caring medical staff, while a nurse came near to check on me and make sure I was ok.  Did I need a glass of water, anything?  It took them over an hour to stop his seizure and I can't even tell you what I was thinking.  I just remember trying to move his blanket closer to him in case that could provide some of the comfort I couldn't get close enough to provide.  

After multiple tests that night and so much medication that he was on life support, off we went to ICU, turning a corner that we will never go back around.  I called the family in the middle of the night this night last year, needing their prayers.  I hope I never have to do that again, and that I never get one of those calls.  

I desperately miss my littlest boy tonight.  I love him so much.  Doesn't the grief get easier at this point you could ask?  My answer would be that the constancy of it changes, but the intensity of the grief is almost more painful in the doses that come.  I don't cry all day, and I laugh often (Peyton is still my dear Peyton!), but I do wear waterproof mascara every day now where I only wore it on special occasions before.  Why?  Because I never know when I will get to experience something that will open the bottle of tears, through which I am drawn back, closer to Drew for a moment.  I never mind the tears, I just wish they brought back more than a memory.

I will be ok in the morning, because "joy always comes in the morning."  My eyes will be red, and there will be an empty tissue box, but perhaps I will dream a sweet dream of the little one I love tonight.  If this prompts a tear, turn it into a prayer of thanksgiving for me, that God allowed us to experience both Drew and His love through Drew.  Drew, I will love you forever and more!  I love you.

Peyton and Jordan, I love you too, and am so thankful for you.  You are rocks in my life.  Thank you.  

Peyton's home

I guess that means we are all home.  We have actually been home for a couple days, but we have been trying to reconnect and avoid all distractions for a while, so I have not yet updated this!  I may be in avoidance mode, not wanting to sit down and write because so much has gone through my mind that I don't know where to start, or I may be in some state of denial or ??? - don't even know what to call it - where I don't want to sit down and write because I don't want to say something and then have to take it back a day later.  It feels like if I wait a bit maybe everything will settle down and Peyton will get to stay home for good!  As if I have any influence over what happens!!!  Silly the way the mind works on overload.

I feel a little like a fly buzzing around frantically.  Almost in circles.  Perhaps aimlessly, though not in the fly's mind.  Flying at that pace until it drops.  Then it drops.  I think it's survival mode - it's what I go into every time we come home from the hospital and some times it lasts longer than others.  It seems like things should be easier now and we should be moving past the idea that we have had to deal with some challenging things, but my mind doesn't know how to sort through this one.  Neither Jordan nor I know whether our grief process (over both Drew and the loss of our idyllic future) has been postponed, or abbreviated.  It has been a blessing in some ways to have had something to change our focus, as we have poured ourselves into supporting Peyton; however, in other ways, it has been so hard to mix the two groups of emotions, each with their own wear and tear.  I think that is partly why I feel like the housefly right now - I don't know where to settle, and what risks settling in one particular spot will bring with it.  I think I will just keep flitting about for a bit, until landing seems like a good idea.  

We are so glad to be home!  There isn't a day that goes by where Peyton doesn't mention at least once or twice how glad he is to be home.  He is doing amazingly well - Amazingly well!!  I am sure I wouldn't be bouncing (literally bouncing) back the way he is.  He had his bowel resection done two weeks ago today and the surgeon said he would be well on his way to recovery and able to resume most activities by 3 weeks, but to hold off on more significant activities until the 4 - 6 week mark.  He also said Peyton would know his body best and would slow down if he needed too.  Last Tuesday he was zipping around the hospital like he had never been better, and the nurses were just waiting for him to show that he was getting tired.  He didn't tire until he hit the bed.  He was a little sore the next day, but trying to restrain him that Tuesday would have been like trying to restrain the wind.  You try it!  By Thursday he was feeling better than he had in months.  We spent Friday, Saturday and Sunday outside, trying to clear the cobwebs and basking in the sun.  It was wonderful, and even more exhilarating to see Peyton brimming over with life. 

Last summer, we promised Peyton that as soon as the snow was gone this spring we would get him a two wheel bike.  He never noticed how fast the snow melted before, but he couldn't let any of us not notice it this year!  We finally held true to our promise this weekend and he got his bike.  He would bring that thing to bed with him if he could.  He rode it out the doors of the bike shop and was attached all weekend long.  We thought he would get tired, but he just kept going.  Today is the only day in the last 4 where he didn't beg nonstop to ride it and that is only because he was sure a tornado was going to hit (strong winds and rain, and a very active imagination).  I am sure we will be out and about tomorrow morning!  He seems to be recovering very well and hasn't complained of tummy pain or nausea at all since his surgery - Praise God!  We hope this will be the end of the complications and that he will not need any more surgeries.  The surgeons can't guarantee anything, but they said there is reason to be hopeful right now.  I'll take that.  Hope is good.

Here are a few shots and a video clip documenting the big day, they made me smile.

 

Eager anticipation...

Riding the new bike out of the shop.

Can you get that out any faster?  Be careful Mom!

Proud new rider

I think this is a rite of passage...

Video clip of Peyton's first official bike ride:

I am still working on trying to get an audio piece posted to add to that story I promised, but I will have to try again when I can think more clearly.  Hopefully that won't be weeks from now!!!

Drew - wherever you are tonight baby, I love you forever, and more!  I miss you like crazy-crazy!  I wish I could give your fuzzy head a kiss tonight and smell your forehead.  God, take special care of my Drew tonight.  Thanks for blessing my son with the gift of being in your presence and free from these cares. 

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!

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!).

http://www.facebook.com/home.php?#/event.php?eid=51294124353

http://www.momentswithabby.blogspot.com/

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!!!

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!