What a trip... we missed the health care workers at Alberta Children's Hospital so much that we decided to come back for a 2 week slumber party! For those of you who haven't already heard, we are here again. Peyton has been privileged enough to be cared for by the doctors and nurses of Unit 3 for the last week and a half. While we originally felt it was far too soon to return we now can express only gratitude and thankfulness to have this opportunity, tough as it has been.
Peyton's body decided it didn't need it's appendix and I suppose I am thankful I will never have to wonder again if he is having problems with his appendix!
Tuesday, a week and a half ago, Peyton started showing symptoms of moderate stomach discomfort and my mother's instict told me it was appendicitis, but our experience had tainted the ability to trust instict to the point that we thought we might be overreacting. By midnight Tuesday both Jordan and I realized we needed to head back to the hospital. As you can imagine, it took alot for us to get to the point of walking back into the ACH ER. On the other side of the coin though, neither of us felt like challenging life - we didn't feel up to taking any chances. Walking in created a moment no words can describe, but I know I can speak for both of us when I say God bolstered us for that moment. When we walked in, we saw another couple from our church with their daughter there waiting and as sad as we were to see them there, it encouraged us so much. The triage nurse was also a blessing - he immediately recognized us and tried to make the situation as bearable as possible. Peyton's nurse in the ER was one of the ones who had done so much for Drew on Unit 3 and who had since moved to the ER - what a gift to have someone caring for us who already knew our background and knew why we might react to a procedure differently than another. Peyton's doctors were also familiar, which some might think would be awkward, but we only found to be comforting. It turned my heart in knots though to watch Peyton go through some of the procedures our little Drew had been through.
We gained an analogy from a friend this week for our experience - it felt like a little spider web that had once been spun so carefully, so intentionally, and so perfectly but was then broken when Drew died. There is now a hole in part of our web, though our web is still in tact. The web has expanded with every gentle touch, caring heart and thoughtful prayer, but there are also holes that are not noticed until you step into one. We can repair the web, but there will always be evidence of the hole. If we sidestep the holes, we will only encounter them again. We will attempt to repair the holes, but only with the help of so many that have come alongside our family. This has been felt keenly in so many ways during the last two weeks.
Sidestep back into the ER... We were struck by the things that jabbed our hearts and also were strangely suprised by the things that did not. On the way to the X-Ray lab, the tears flowed freely when we walked by the MRI waiting room where we had gone shortly before we found Drew had 2 weeks left, but the X-Ray was simple to watch. Watching Peyton get bloodwork done was difficult as we had done that hundreds of times with Drew, but seeing the ER rooms and going through those halls was much less difficult than I thought it would be. We found an unexpected blessing in the nurses who were nearby as well. One of the nurses I drew so much encouragement from on many of the visits Drew made to the ER was right across the hall Tuesday night (thanks Kaitlyn!) and that lent so much comfort in the midst of the strangeness. After they examined Peyton it was determined that he probably just had a bad gastro bug and we could take him home. We felt a little silly leaving at 7:00 a.m. that Wednesday morning but were also slightly relieved.
By Thursday afternoon at his prescheduled (from October) pediatrician's appointment it became very apparent this "gastro bug" had progressed and she could only recommend that we head back to the hospital. Here we go again. We were greeted by exceptional care in the ER and our nurses were amazing. They had to start Peyton on an IV at this point and after some more testing, decided he should stick around even though they couldn't say for sure what was going on. After another ultrasound and X-Ray they couldn't see his appendix, but his colon was swollen on the left side. He was having stomach pain all across his lower abdomen and all the symptoms he was having were atypical symptoms for appendicitis. The doctors thought it might have something to do with his colon. They asked us if we wanted to stay in the ER that night as the beds upstairs were all full at the time, or if we wanted to go home and come back in the morning. We joked that they should call up to Unit 3 and tell them who was coming, but little did we know that the strings were already being pulled behind the scenes by our ACH angels! It turns out that the Unit Clerk noticed we were coming and put the plan in motion to provide us a space if at all possible on Unit 3. The caregivers in the ER were very conscious of our history and gave us the courtesy of asking if we would prefer NOT to be on Unit 3. We quickly responded we would rather be nowhere else than with those we knew best and trusted unequivocably on Unit 3! Thank you to all those who made Peyton's stay work out so smoothly! (We since found out that most of the appendix cases are now on Unit 4 - I can't imagine having to be here and not to be surrounded by these nurses!)
Saturday night might have been the most trying part of the experience, but once again, we were supported so well. Peyton took a turn for the worse Saturday night and though it seemed some of his symptoms were improving during the day we realize now that it was probably due to the fact his appendix had likely ruptured by that point. He woke with extreme stomach discomfort during the night, and other symptoms pointed to trouble. Our nurses and doctors were quick to get things moving Sunday morning and by 10:00 a.m. he was in for an ultrasound where they still were unable to see his appendix (Ultrasound # 3 where no appendix showed up!) but they could now see an abscess the size of a softball in his pelvis. The surgeon was in shortly and said we needed to remove the abscess and he was pretty sure he would find a ruptured appendix too - by 2:30 we were certain. The surgeon said it had ruptured so he had tried to remove both the appendix and the abscess. He also mentioned they hadn't been able to clean the abscess out thoroughly and there was a 5% chance Peyton could develop a second abscess. Jordan got to go into the recovery room to see Peyton as he pried his way back into consciousness and helped wheel him back to Unit 3 while I waited and tried not to think. He arrived with the ever too familiar NG tube in his nose, a drain and 3 incisions in his stomach, a catheter to closely monitor him to make sure he didn't go into septic shock, 4 IV lines into his right foot, an IV sight on his left hand, and an oxygen saturation monitor on one of his left fingers. Wow! He was more connected than Drew ever was. I think the NG tube bothered me more than the stomach drain, but looking back on it it's amazing how much we just functioned Sunday through Wednesday and didn't actually stop to think.
He had all the above removed Wednesday, except for the NG tube which came out Thursday morning. During the whole process he showed us his fighting spirit, fighting to the point that he had to keep everyone but Daddy out of his ring! We have determined that Morphine and Peyton are not a good combination. I will be glad to have him weaned of that!!!
Thursday proved that our family does not like percentages - they did a follow-up ultrasound to check for secondary abscesses and it showed he had 3. Ug. I will never play the odds again!!! We were now in the 5% that this MAY happen to. The surgeon said he would like to see how Peyton's body will respond to them instead of going in and draining them right away so he increased the duration of heavy duty antibiotics and ordered a repeat ultrasound for Monday. The hope is that his body will absorb the fluid and we won't have to go in again (hint hint - prayer request). It appears at this point we will be here until the middle of next week so we have taken up residence again.
Peyton seems to be doing alright with the experience, if you can overlook the extreme moodiness. We did ask him upon his admittance what he was feeling and he said he was scared he was going to die. That was a little heavy to take, but only made sense. A couple friends came in later this week and showed him their appendectomy scars and it was after that that he stopped contradicting us when we said he was going to get better. It's difficult to know what a 4 year old is thinking, especially when under the influence of Morphine and in the midst of a surreal experience. We are just praying that he will soon begin to show the nurses his charming side so they won't walk into his room gingerly! : )
As for Jordan and I, I think we are functioning without thinking as mentioned. Someone asked me if I was sleeping here with Peyton or trying to get home for a good night's sleep to which I had to respond I will likely sleep better here. If I am at home it may hit and I could find myself awake all night unable to drift through the emotional haze into sleep. Someone asked us last week if we were angry that these things have happened to our family and I realized we are not really angry at all. My last post may have showed you that I am dealing with some type of anger over the reality of our grief (which I only realized after reading the post a day or two later! - sorry if it was too blunt!), but I think this situation has transported us to a completely different place. The nurses here are going above and beyond for us - each nurse we have had has brought more than their skills in, they have shared their hearts with us. The two or three times this last week that the reality of the situation actually sunk in someone was there to lend a shoulder and they went far beyond the tasks expected. I could not possibly tell these nurses and doctors here how much they have contributed to our family's life.
Peyton is doing better today and is actually willing to walk down the hall, albeit gingerly, to get a popsicle, but we are still keeping a close eye on his temperature and soreness. I am pretty sure we are out of the woods and hope to hear Monday that the abscesses will remedy themselves, but in the meantime we will just keep praying and being thankful for each new experience. We could be angry, but if I am really, really honest right now I would tell you that I am just happy to be surrounded by people who care, and that Jordan and I are thankful for every moment with Peyton, tough as some of them might be. You probably would have either laughed or groaned to see us taking pictures of Peyton all hooked up, eating his first popsicle, sitting up for the first time, walking the first time or smacking his popsicle blue lips, I think I groaned about some of them. We are glad to be able to capture each moment, and as hard as this experience could have been, we are just so glad to be on the other side of the hall this time. We are now the parents that have the simple case, that get to go home in a week or two and know their child will be alright. What a gift! We are also glad to be here to spend some time with those we have developed friendships with along the way. On that note, please continue to pray for our little friend Abby as she continues to fight her way along a tough road. Her parents are amazing, but please pray for strength and wisdom for them as they encounter many tough decisions as they care for Abby. Thank you for your continued prayers for our family and theirs.
Monday, January 12, 2009
I miss my little Drew so much!!! I cannot begin to tell you how many times I think of him in a day or how much I yearn for him. There are not words enough to describe what it feels like to be missing this piece of my heart, to not be able to draw him near to fix the pain, or to not be able to kiss his fuzzy little head. All through his illness, as bad as it got, drawing him close somehow made it feel a little better and a lot less scary. Now there is no salve for the pain other than my faith in God, which some days is more than enough and other days seems so inadequate (please don't misunderstand me there). Some days are easier than others, but there are so many hard days. I had no idea it could hurt this much. I began to type "hurt this badly", but I can't say it hurts "badly" - the tears only serve to draw me a little closer to both God and Drew. As much as it is hard to cry, it would hurt worse not to. I will love you forever Drew, and time will only serve to remind me how much.
The grief process has surprised me. Intellectually we knew what to expect, but when you are in the middle of it nothing can prepare you for the experience of it. For the first month we were walking in a fog, functioning, and attempting to make sense of our new normal. The first half of the second month was much the same but after about 6 weeks the grief hit. We quickly realized what a salve the shock had been and how much we had yet to deal with, though there is no way we could know how long we will be in the middle of it. With each week since then it seems as if the grief has gotten a little stronger. Am I depressed? No. Am I happy? At times. But how much can I live when I am always living missing half of every breath I breath? What is it like? Where do I begin? Does anyone really care to know anyway, when what I have to share seems so sad and so hard to write. The only thing that compels me to write is the thought that perhaps this will help someone else or will help someone else reach out to someone hurting.
There are so many places I see Drew. We hung all of our Christmas ornaments and as we reached into the box we found Drew's ornaments, one of which had his handprint on it. We had dreamed of the day when he would look at that with us in awe that he was that small. We had a conversation with our small group about babies and the lovely things they do and the topic turned to babies pooping. Jordan and I were immediately transported to the hospital room where we cannot even write what our memories hold. My beautiful niece comes up to me every time she sees me (she is 6 weeks older than Drew) and asks to see "Do", the pictures of Drew in the locket close to my heart. I took the laundry out of Peyton's room this morning and went by Drew's room looking for random dirty articles and was poignantly reminded that there was no laundry in his room. I sit at the computer this afternoon in the middle of what would have been naptime and hear a noise only to remember that it is not a baby summoning me. I babysat my niece last week (which is such a blessing) and went to change her diaper and realized how natural that felt - but was struck immediately by the realization of why - I should be changing diapers too. I have a preschooler who does not need diapers and who is so far away from "baby" - I have been so quickly transported out of baby world when my mind is still in the middle of it. I walk by the corner of the living room where the tree was and realize how vacant it looks without the rocking chair that provided so many good cuddles over Drew's last 3 months and upon closer observation see a spot of milk on the floor below that must be left from him (I even cleaned it I'm sure before the tree took the spot over). I look at the kitchen and appreciate the space it has now, but then realize that with that space is also an absence of Drew's special little chair that supported him while I was feeding Peyton and him. I would say music touches me with him and a little bit of heaven every time I hear it, but I can't bear to listen to music that reminds me of him often right now - I know the time will come (I have to segregate those opportunities right now into very specific moments when I am prepared for it). I loved going out with the kids during the day but now it is almost too hard some days because there are so many unpredictable elements - I never know what will remind me of Drew. I know it's not bad to be reminded of him, but I would rather choose the things that remind me of him and the timing. I walk home from dropping Peyton off at Kara's for a day and am reminded of walking that path home with Drew excited for the opportunity to spend a day one on one with him and now my arms are empty on that path. I reach for a spoon for Peyton and see the one we got for Drew that he loved to chew on. I watch Peyton kiss "Drew Bear" good night and kiss him where Peyton instructs me to, and then we say, "Good night Drew Bear" every night and then cuddle Peyton to sleep while my thoughts drift inevitably to thoughts of Drew and Peyton together. I write a card or a letter and always stop abruptly when I begin to sign it wondering how to sign it. What do I say when I am trying to say Drew died - how do I put it into words? So many conversations with friends bring reminders of Drew and watching brothers together always pricks my heart. Drew caresses me with his memories often and I am so glad for those. I wish memories had smell and touch, but I will take the visions I have of him instead, thankful for the days we had with him. My heart will go on without this piece, but as a bird without a wing I will always notice the fact that his presence is not one of physical body but of spirit. I know God will repair my wings, but I have to learn to fly all over again.
Some friends have asked whether we would rather not talk about certain things and to that my current answer is that every parent always wants to talk about their children. Our conversation will just have a different spin on it, but does that mean we don't want to talk about Drew? Not at all! What do we have left of him but thoughts, memories, and conversations? Please let us talk about him if the opportunity arises and don't be afraid to ask the questions. If the timing is not right we will let you know. If we are with someone who is afraid to talk about him or our experience there may be an awareness of the unspoken in the room regardless. It's a strange place to be because talking about him often brings tears but working through it is therapeutic I suppose - if someone gets in an accident, has a stressful run-in with someone, or experiences a challenging event the first thing many want to do is to talk through that situation. In grief though, I think people are afraid they will hurt the one who experienced the loss when they talk about their loved one, when really, that person might need nothing more than to be able to talk about them. There may be moments we do not want to open up, as it seems there is a period of not wanting to talk, or rather, of wanting to be able to control the moment of opening up as one moves through the grief process, but by asking, you allow us to decide. There are so many parts to the grief process! How did we wake up here?!
I feel we are at the stage of withdrawal right now and if we have not returned a call or sent a thank you, please forgive me/us. We will, but when the time is right. If I think about what withdrawal is for many experiences, it is a stage of the body yearning for what it is missing and experiencing extreme symptoms while it attempts to readjust to the new way. I feel a little like that - in a stage where we are so intensely trying to make sense of things that all our energy is applied to survival and little energy is left over for anything else. If we nudge ourselves out of our comfort zone we realize life is still good and involvement with community is a blessing. Getting there is another matter. I guess I need to yield to the stage instead of trying to fight it (thanks Amber for this advice so long ago!) and then it will be a little bit easier to face.
One more random thought occurred to me as I reread this post - are there certain things that have been hard to hear over the last 3 months? I think the hardest things to hear are: 1)"At least you still have Peyton." (I realize many times every day what a blessing he is and am extremely thankful for him, but saying that feels a little like saying, "At least you still have your front wheels to drive with even though you lost your back wheels." or, "At least you have one wing to fly your plane with.") 2) "How are you doing?" (What can I answer to this? Especially if we only have 2 minutes to talk. This question seems like a question one asks expecting me to open up about my deepest feelings in whatever time we have available and regardless of our relationship depth. A better way to express concern and curiosity might be done by saying, "You have been on my thoughts a lot lately and I hope you are doing alright." This allows me to open up if I am ready to and expresses concern, but doesn't force me to talk about it if I'm not ready to). 3) "Call me if you need to talk, or just stop by." (Thanks for the offer, but when in the middle of a crisis the last thing I feel inclined to do is pick up the phone or go over to someone else's house. As mentioned before the focus is on survival, not maintenance of friendships as selfish as that sounds. It's not intentional, not for a moment. It's just part of breathing. It would be better if you call me, or stop by (after calling) to see how we are doing.)
What things have people done that have really helped? Apart from the cards, visits and meals immediately after Drew died here are a few of the things so far that have been the most helpful: 1) Random cards or flowers sent after the immediate rush often come on a day that needs a pick-me-up. 2) Anyone providing a memory or picture of Drew is always like a ray of sunshine in my day. 3) Telling me what Drew meant to you always helps bring a smile. 4) One of the most special things that someone has done for us is to give us a gift certificate to buy a tree to plant in his memory. I could list more but my brain is on freeze right now so I will list some ideas over time.
We have received an update on Drew's disease and the impact it could have on any future family members. We will post an update when Jordan and I can sit down and write about it together. Thank you for all your prayers and thoughts - we appreciate every one! Please pray right now that God will grant us wisdom and peace over our decisions that must be made soon. Thank you so much.