Tuesday, March 24, 2009

Some of my thoughts

First - we are still at home - Praise God!  Peyton actually even had two good days in a row (no tummy pains = good day).  We are hopeful that this is the start of a new trend that continues without end!

Second - I have to share some of those thoughts that I mentioned in my last post - that I have been writing in my mind but not putting letters to.

Peyton and I were visiting a good friend at the Children's Hospital Saturday morning and though it was a brief visit any time there is enough to get me thinking.  We were driving away and I came to a stoplight just a block away from the hospital.  I found myself drifting into the sunbeams momentarily and after being startled abruptly, I realized the light had changed and the man behind me was honking angrily.  Now you have to know that the car in front of me had barely moved into the intersection, but apparently I was not moving fast enough.  He laid on his horn and after a second decided that was not enough so he moved to the right hand lane to pass me.  The funny part was that I had already rejoined reality and was now traveling at the speed of those around me.  He wasn't getting anywhere fast.  He quickly realized the futility of his attempt so he moved back behind me.  About 100 meters later, he pulled into the left hand turn lane, but was still so irritated at my previous slowness that he again laid on his horn.  I suppose he felt he had a duty to do to let me know I was in the wrong and that I should never do that again, but I longed for an opportunity to have just 30 seconds of his time to tell him why I was slow off the start.  As I was thinking this through it occurred to me that I have been in both sides of this scenario now, and for a moment I felt saddened by my previous behavior.  What if the person I was so impatiently waiting for just lost someone in a car wreck, drove away from a hospital where they left someone behind, left a child forever in someone else's hands, experienced a breakup or family crisis, or lost a job?  What good would my honking (or desire to honk) do?  Would it only serve to make their frustration more intense?  What they probably needed was a prayer.  Worse yet, my frustration in those situations only serves to irritate me.  Perhaps I should enjoy an opportunity to let life slow down a bit and be thankful for that moment to breathe more deeply.  I am going to try this approach, even if I can't have 30 seconds of that man's time.

I have to share one more thought that came through an interaction with my beautiful son Peyton.  He was eating breakfast ever so slowly this morning and wanted a story.  He wanted a story about lighthouses, little blue ones.  As I told him the story, he wanted to know all about lighthouses and what their purposes are.  My thoughts went two directions simultaneously - answering the questions while realizing the depth of the picture we were creating.  
Bear with me while I process my thoughts in ink... a lighthouse serves to shed light on the unseen, to provide guidance in a fog, and to warn of potential areas of danger.  The thought occurred to me as I told him the story that perhaps at different times in our lives we are either the lighthouse or the ship sailing nearby.  I thought of how many times I have looked for the lighthouse over this past year and am so thankful for all the lighthouses in my life.  Thank you.  There are so many of you!  
Peyton wanted to know more about the light in the house then.  I am sure that most lighthouses are automated now, but there was a time when the light had to be kept burning by the keeper, and even now someone always makes sure everything is working alright.  I realized that at those times when I have hopefully been the lighthouse there has been someone keeping my light burning and I am abundantly thankful for the Source of the Light.  Thank you Father God.  
My sons teach me so much more than they know, what a gift they are.  Enjoy your children this week for me!  Breath them in and give them that extra kiss!

Saturday, March 21, 2009

I'm so cited to be home!

That's what Peyton said yesterday morning as we started out the day!  We are home again, and actually have been home for a couple days.  I have not found the time to sit down and update this blog although I have updated it at least a couple dozen times in my mind.  I have had so many things to tell you all about - now if only I could remember all those things.

Peyton was discharged a bit ago with the statement from one of the top surgeons at the ACH, "I am not sure why this is happening.  It's very unusual to have this many complications in this time frame after an appendix rupture.  Go home and if he has tummy cramps for more than 4 - 6 hours (along with a couple other conditions) bring him back in and we will decide how to intervene at that point. ...  I don't know how long this will continue."  Oh boy.  Well, it's a good thing he said 4 - 6 hours - I think Peyton's body heard that and is responding accordingly.  He has had at least 2 incidents a day of what I am calling contractions for every day since hislast  discharge, but the longest incident came in just under the cut off time!  That means he looks like a woman having contractions in some stage of labor (depending on the incident) for anywhere from 1/2 hour up to 5 1/2 hours.  Can we get an easy button or an off switch please (or maybe an epidural)?  He is toughing it out so well.  I imagine if it was happening to me I might add all the incidents up and each time it occurred it might hurt more because of the emotional strain adding up.  For him, it seems he starts over with each experience.  He also tries to say it doesn't hurt alot of the time, but he's not very convincing - he will be cramping and trying to say it doesn't hurt while walking hunched over and heading for the couch to lay down.  I am glad he's still transparent, but even more, I wish I could make it better!

God continues to bless our family in the midst of each trial.  I missed Drew alot this week and have determined that though the sadness was overwhelming at the beginning, the longing that grows and grows with each additional day of separation becomes much more intense as time goes on.  My faith is so shallow some days and on those days strangely, Drew feels so much farther away.  It's at the end of one of those days that I am often reminded that my frailty allows God's strength to pervade.  I am so thankful for God's presence and support in my life!  When I was at my lowest this week and reaching out for a reminder of God's support, calling to Him to prove He still cared, I ran into someone in one of the unlikely places that are so characteristic of God's ways.  We talked for a while when out the blue in conversation she said, "This will not last forever.  It will be ok again."  The moment the words were out of her mouth my heart received a lifesaving jolt.  It will be ok again.  It wasn't the feelings of missing Drew that were overwhelming me, but the feeling of sinking into despair.  The feeling that I might have to feel like this forever.  It will be ok again.  I have been reminded to look deeper into life by coming back to the simple - touch and enjoy each touch, smell and smell deeply, feel the wind and the sun on my skin, taste and savor each taste, pause and allow myself to just exist without thinking, and most of all, look for that ray to be thankful for.   Drew provided an unexpected blessing in my life - I want to see those unexpected blessings... I may feel like the sky is gray all day some days, but I want to remember that on the gray days the colors of the grass deepen and the smell of the flowers linger longer.  Thank you God for blessing my life with the gray days, but give me the eyes to see the gifts in them!  I know You better because of these blessings, but I feel I still know You so little.  Please draw me in closer every day and overwhelm me with Your love.

Please continue to pray for Abby in your prayers and for her family, that God will continue to support them and give them guidance.  She may be allowed to go home soon (she has been in the hospital for almost a year now, with only about 5 weeks at home) - please pray it will work out well.

Finally - I have to share a photo suggested my budding photographer.  He has the most interesting angle on life and with a little help he captured this one.
Thanks as always for following our story, you have no idea what a blessing it is to know others care.

Sunday, March 8, 2009

Where is home?

I am sure you can guess by the title of this post where we are right now, but if you haven't guessed yet, we are back within the walls of the Children's Hospital. Peyton is training to be a nurse, and I needed another course on how to be a Mom Nurse so here we are. I am learning more about the gut than I ever would have chosen to know, but still only know enough to be dangerous. Fortunately Mom Nurses only need to know enough to make the owies better or to know when making the owies better is out of their control. Peyton on the other hand seems to get more and more fascinated with the medical field and has no problem watching someone get bloodwork done, etc. We asked him if he wanted to be a nurse or a doctor and so far he thinks he would rather be a nurse. I had to marvel this afternoon too when he actually stopped to wave at one of the "poking people."

On to the reason for the title - Peyton had another bowel obstruction last Wednesday. We had been home for less than 48 hours. The problems seem to be coming from the area where he had his bowel surgery done. The last two times he has had complications now it has been in that spot, likely due to the adhesions from the scarring. Anyway, he was again put on "drip and suck", an IV and an NG tube (nasal tube to the tummy) to drain his tummy in the hopes of releasing the pressure in his bowels to avert the possibility of another surgery. We decided to change his diet a little this time too, even though they say it has nothing to do with his diet. Hopefully this will work, but my mommy senses are tingling. His tummy is a bit bloated tonight and has been sore since this afternoon. Please pray that this will not be the start of another obstruction and that he will be ok tomorrow!

On the topic of prayers, please keep praying for our little friend Abby - I believe God is showing his love for her and answering your prayers. Pray for strength for her parents too; they are amazingly strong people, but are going through so much.
Please also pray for Peyton's emotional well being - he cried about Drew for 1/2 hour Friday, between a few sessions about how much he wanted to go home and how much his NG tube was bothering him. He misses him so much. He still has a very neat bond with Drew - he is quick to mention that he has a brother who is in Heaven and will tell you all about Drew at the first chance. I am thankful for the fact that this experience has made it easier to talk about Drew, in spite of the tears that might come with it. It has been a healing experience in many ways.
I would love to write more, but my bed (flat surface with pillow and blankets that might as well be a feather bed for all I know once I hit the pillow) is calling. Thanks again for all your support!

Monday, March 2, 2009

We Are Home (aka Little Blue House)

Home is NOT the Alberta Children's Hospital.  I have to remind myself of that regularly when we get so comfortable that we could pretty much forget that life exists outside of that world.  Ok... I guess we can't really forget, but it's amazing how you can carry life on in one little room and the surrounding "metropolis" of Hospitalland.  

The doctors gave Peyton his papers today and sent him out the door, but they didn't promise he wouldn't have to return this time.  I kind of wish they wouldn't have given us odds the first time that an obstruction after a rupture/surgery might occur about 4 - 5% of the time in kids like him - you know our history with odds.  We have now had two occurrences since the original surgery.  Oh boy.  I don't think we knew the extent of the infection from the original rupture and abscess until all the complications began to arise.  Now they are saying we are high risk for bowel obstructions due to adhesions from scar tissue for the next two years.  I am now working on the mindset that we may have to go back for this yet again, in the hopes that I will be pleasantly disappointed (do those words go together?) if we don't.  At this point I think I would rather expect it and be glad it didn't happen than not to expect it and be blindsided by it.  Strangely, I think we needed this last little experience to prove that there can be a short, uncomplicated hospital stay and that these occurrences, if they have to happen, can resolve without surgery and serious intervention.  It provided a sense of relief that you could probably feel when you walked in the room today.  We had been holding our breath until today.

Peyton started his day by getting his NG tube out which he was less than thrilled about.  We gave him the option of having the nurse do it or of letting him do it by himself and he went to work, crying the whole time.  He was so proud of himself afterwards and so excited to be tube-free that I don't think there was a person on the floor that didn't hear his story.  The next hurdle was to take the IV out of his arm, and we left that until the last possible minute.  I think removing the tape was the worst part of the procedure, and you would have thought we were doing minor surgery.  He was so thrilled physically and emotionally to be free of the last fetter - the look on his face and his statement a few minutes later said it best.  He asked if he got to go home now that the "straw" was out of his arm and if it was ok.  I said yes, and he then said, "And I don't even have to go to Heaven?!"  He got so excited he nearly leaped off the bed and it was all I could do to contain him while I rounded up the odds and ends that had collected in the short time we called his room "home".  We knew there was an emotional impact this time around that was much more evident, but I don't know that either one of us knew the extent of what's been going on in Peyton's little mind lately.  

I may not be inclined to put the suitcase away this time so quickly - the thought has crossed my mind that I should leave it packed and then perhaps we won't have to go back!  If Peyton wasn't going through clothes so quickly I might leave a stack in there, but luck would have it that if I left them in there and we did end up having to go back that whatever I left in there would fit like his mom didn't want to accept that he was growing, or she thought there was a flood coming!  Unpacking one way or the other will not be happening tomorrow!  We are going to play all day.

Thanks again for your prayers - perhaps they made the difference between a short stay and a long stay!  We appreciate every one.  Please continue to pray for Abby - she is experiencing complications currently and has had a rough last couple days.  Please pray she will bounce back quickly and that her parents will have peace in the middle of the storm.

Sunday, March 1, 2009

IV poles have wings... ?

Ready, set, GO! I finally made a deal with Peyton that he had to tell me when he was going to start running. We are back to the point that I am working to keep the IV pole up with Peyton. There were a couple of close calls today (Sunday) and we barely averted a crisis a couple times! I decided I could try to slow him down, or I could enjoy every second of him trying to regain his grip on boyhood and all that means. I would rather keep up than squelch that; as such, I kept my eyes peeled for any indication of movement whenever he stopped to catch his breath. It must have looked a little funny to see Peyton carreening down the hallway with his little reindeer slippers on, holding his left arm protectively close to his body, head tipped to the left to protect his NG tube from pulling, football jersey on with tubes attached and askew, and Mom and an IV pole going at frightening speed as close behind as possible yet far enough away to avoid catching his heels or crashing into him upon a sudden stop. He needs flashers and indicators. Do they make those for little boys?

Peyton is doing very well today and it appears the partial obstructions due to the adhesions are working their way out. We are thankful. He is back to blue popsicles and juice today, although he seems to have had enough apple juice that he can take no more so we are avoiding that. We will see soon enough if he can tolerate fluids and then hopefully we will be able to progress to solids. We are sneaking food in for ourselves when he's sleeping or eating in the hallway right now because he wants anything that he sees us eating. I guess I would rather have him asking than not, but it feels worse than eating in front of a big-eyed puppy doing his best "please feed me" look!  Dinner at 9:00 p.m. and breakfast grabbed bite by bite on the sly will work for a day or two but I am looking forward to eating family meals at a normal hour!