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March 2011 - From the Bridge June 22. 2010 - Party Invite - "Thank you!"
Thank you. Two such small words with such big meaning.Thank you so much for being a good friend to our family.Thank you for helping us get through nearly four years of a tough fight for our little Jonathan.Thank you for helping Jonathan make it into this world.Thank you for helping him make it to where he is now.Thank you for reaching out in small ways and big.Thank you for everything. For you played an important part Jonathan’s survival and in his “thrival”.On April 11th Jonathan’s last tube, his feeding tube, was removed. And on May 22nd we were told he was doing so well it could stay out! No more tubes, meds, dressings, infections, interventions. Sunday July 18, 2010, 6:00 – 9:00 PM The Piston Club
May 19, 2010 - follow-up with Dr Fecteau The amazing news is that Dr Fecteau doesn't feel she needs to see Jonny for a year! Not, in a month, or three months, but a YEAR. Astonishing! She is not worried about his slow weight gain, as she can see that he's taller and it takes calories to heal from surgeries and tube removals etc. She thought he was healing nicely. We pointed out two soft areas in the top part of his abdominal wall that bulge out when he coughs. We were worried they could be new hernias. She explained to us that, in fact, when she closed his abdominal muscles in September, it was only the lower portion that was able to be fully closed. She didn't need to put in artificial permanent mesh, but they did use something called surgi-cell to bridge the gap between the muscles and cover the organs. Surgi-cell is actually made from pig intestines, so maybe this is why we were not told sooner...? ha. Anyway, it allows scar tissue to grow over the gap and then dissolves. So, yes, there is no muscle there in front and near his sternum, but she is not worried about it. She said it isn't a concern for protection (scar tissue can be pretty hearty so to speak) and if we get concerned that it is developing into a hernia - more bulging or pain, then we'll contact her and see if it needs to be fixed. But for now, she's not worried and he's going great guns! He took his first train ride last weekend, and his first swim in a public pool without a shirt! Jonny and Eli were wrestling in the kitchen last night, rolling over each other. Eli is naturally careful, but could play more freely with Jonny. Yahoo! April 24.2010 - A New Era! I am posting new photos of Jonathan on the photo page, and of his new tummy. So far the "wound" site is healing well and he is also eating well. The surgeon will determine in a couple of weeks whether she is comfortable with his ability to "self-sustain" and we can keep the tube out forever. It has meant an unbelievable change in our lives. If she gives us a green light, we are going to host a big party and you are invited - and we're not kidding! Details will follow. It will be the end of an era. A miraculous change in circumstances. The beginning of new freedom for us all. The "beat the odds baby" (BTOB) will have really, truly unbelievably, beaten another huge "odd". April 23,2010 - A Story from "Safta" Lily Flacks April 12, 2010 - BYE BYE TOBY TUBE!!!!!!!!!!! Yesterday, the whole family took Jonny to Sick Kids to see Julia Kelly, the G-tube nurse, to have Jonny's feeding tube finally removed! Eli insisted on being there to help Jonny through it, so Janis pulled him out of school and met us there. And I'm glad Eli was there, because Jonny was freaking out about seeing Julia, and about losing his tube, but settled down when he saw Eli. We went in and it was very fast and it was out. Unbelievable!! We've been mum about the news in case it didn't happen, but now our Jonny has no more tube! Taking care of the site will be our priority for the next month, hoping everything closes properly inside and out, and stays clean. He ate well yesterday, too, as if to say, "Yes. I am ready." In the meantime, he's wary of being touched there. Fair enough. We're so excited about the new beginning that this is for our whole family! We're so grateful to all the professionals and friends who helped get us here and believed Jonny could do it - especially Amanda the OT, Dr Campbell, Julie, Heather, Tina at the nursery, Joan, all the friends and family and respite workers who patiently helped get Jonny eating! One year ago, I could not have imagined this! Here is a story Eli dictated to me for Jonathan, to help him with this transition: JONNY’S GALAXY Once upon a time there was this galaxy where everybody had tubes, and very few people could get their tubes taken out. The only person who could get their tube taken out was this person named Heiko. In this galaxy if you got your tube taken out, you were the most special person in the whooooooooooooole galaxy. So… the end! March 30, 2010 - Icky tube Yesterday, one week after Jonathan finished this recent 14-day course of anti-biotics for his G-tube site infection (his third round of anti-biotics) the infection came back again! Something is icky with that tube, we are sure! Anyway, we called Dr Campbell, and I think it's safe to say that everyone has had enough. Jonny has not been tube fed for most of this month, and we are now moving toward planning to remove the tube. We will keep you posted. Happy Passover and Easter. March 20, 2010 - Star Article I thought I would share this article that Diane wrote for the Toronto Star. She was talking about this recent surgery experience with her friend Richard and he said, "You should write about that." So she did. And I think it captures something quite special.....Click HERE to read. March 18, 2010 - Good spirits Jonny's infection seems to have cleared up. His spirits and energy are returning to a place that they haven't been since before the closure surgery in September. Maybe that hernia was really bugging him all this time!? Besides a runny nose he seems great! Dr C hasn't gotten back to us yet, so we'll wait and see about the timing of getting rid of G-tube. In the meantime, we are not using it for feeds - proceeding with the wean. March 8, 2010 - When things turn, they really turn... Yesterday Jonny began to complain of pain. I thought perhaps it was the soreness and bruising from the hernia (those poor purple testicles!) but it increased until the night when, at around midnight, he was screaming in frustration and pain. I worried that a suture had popped or any number of scenarios filled my anxious head until at about 2:00 am we finally pulled out the flashlight and, despite his protests, took a good long look at the site. What we found was that the hernia site looked pretty normal, nothing out of whack. But when the light shone on his g-tube area we recoiled. Red, shiny, swollen, oozing, sticky...The infection has come back in all it's glory and ugliness (the day after we finished round 2 of anti-biotics for it!). To make a long story (and night) short, in the morning Diane called the g-tube clinic first thing and actually got Julia who told us to contact his paediatrician, Dr. Campbell. With pure luck we made contact with his nurse who got him in very quickly this morning. After lots of observation, questions, etc, etc, we came away with two outcomes: 1) Another antibiotic (this will be the third in a row since January) to fight this new infection, and 2) a plan for Dr. Campbell to consult with the g-tube nurse, Julia Kelly, and his surgeon, Dr. Fecteau, and make a hastened plan to wean off the g-tube - the source of the trouble, even though we're really barely using it for feeds anymore. This is kind of exciting, nerve wracking and unbelievable! We will keep you posted. Never a dull moment. March 6, 2010 - Doing really well Okay, there is soreness, swelling, two healing inscisions and bruised testicles. He hates having anyone get near the site, fears his diaper changes and when he poos he cries out in pain. But if you didn't know what he had just gone through, and his clothes were on, and you just saw him out and about, there is no way you could tell Jonathan just had surgery three days ago. His spirits are good, he's happy, he's walking well and even jumping and playing around with Eli (who has been the best big brother ever). I am so impressed with them both. Jonathan's pain tolerance, his indomitable spirit, his joyful energy is amazing to behold. I think we're riding this one out very well. We'll have another quiet day with JJ today while Eli has a "big boy day" with David and Jake. They are off the Nathan Phillips Square for skating. All is well. Yeah, Jonny and yeah, Eli. We are the luckiest parents in the world. P.S. As Jonny was lying in bed recouperating yesterday, Diane lay beside him and showed him photos from her computer. He is at that age where he loves looking at photos of himself and Eli. At one point he saw the photo of himself as a tiny baby with the giant O bigger than his head (the one called December 2006 on the photo page here) and he called me in. I arrived to hear him giggling and he pointed to the photo and said, "Look Mommy, look at the funny photo! That's me, that's me!" March 3, 2010 - It's done Jonny's hernia repair is done. Doctor Fecteau said it was big so they're happy it's closed. He's out of surgery, out of recovery and they let us take him directly home (without having to go up to 6B) so we'll be able to see Eli when he gets home around 7:00 (which will make Eli very happy). It all went much faster and smoother than we thought. I hope we're not home too soon but I think everything should go alright. He's vomited twice and is uncomfortable. We can give him tylenol every 6 hours and advil in between to manage the pain. He was really mad and upset in the recovery room when he woke up. He wanted the monitors off, the IV out, everything gone. He was kicking and crying and punching and Diane and I couldn't help but smile, thinking, "He's going to be okay". He's been sleeping mostly since we brought him home. Whining and crying here and there - which we expected - but looking generally good. No baths or heavy activity the rest of today or tomorrow. We haven't really gotten a look at the incision site because it's crusted with blood and he will not tolerate anyone getting close to it. That is fine. We'll see it when he's feeling better when we wash it a bit. What a brave, brave, boy he is! And Eli was very brave and strong too. March 2, 2010 - Hernia repair tomorrow Jonny's surgery is scheduled for 12:30pm. Both boys know and Eli had very little to say (yet), while Jonny did not want to have Dr Fecteau fix his bump. He was clear he does not want to go, and does not want any ouchies. Thank you to everyone who has already sent good wishes. Janis and I are hoping for little pain, good outcome, minimized fear for Jonny, and a healthy, swift recovery. Then, onward, BTOB. In general, Jonny is eating so well now, is so vibrant, and is emerging as himself. His strep did come back around his tube btw, and was treated with new anti-biotics. He's so brave and now says the word "anti-biotic." Eli's slapstick pie-in-the-face routine went beyond belief at school. He was a major hit, which has bouyed his spirits and will carry him through the next few days, we hope. The play I was in "rocked" to use Eli's nomenclature, and Janis did brilliantly juggling the kids and work. Tomorrow is another day. UPDATE - early this morning (March 3) Eli said he hopes Jonny doesn't feel dizzy or sick from the anesthetic and he hopes he stays alive. I'm glad he told me his fears so we could talk it through. Man. Feb 17, 2010 - Strep and OT Jonny's site did come back positive for a strep infection, but the broad-based anti-biotic seems to have kicked it! He is doing and looking SO much better. His spirits are amazing. We have to watch him now and if the strep re-occurs, we have to get him to Sick Kids for strep-specific anti-biotics. Hopefully, however, this round of anti-biotics will have done it and he'll be fine until his surgery day. We saw OT Amanda today and she is impressed with his spirits and the fact that he gained the weight back that he lost during his bout of pneumonia. She thinks we should continue letting him eat everything he desires, and helping feed him as we go, and continuing to provide a small bolus of extra calories at night. After this next surgery, hopefully we can discontinue the night bolus (checking in with Dr Campbell and getting a weight on Jonny first) and then, with time, maybe, maybe, no more tube... Eli has been especially caring about the tube, and a few days ago, Jonny mumbled to himself, "Eli is my angel-brother." Absolutely. Right now, Jonny is downstairs doing his loud giraffe and elephant noises. Feb 11, 2010 - Update We had to take Jonny into Sick Kids today to see Julia the G-tube nurse. He is in a lot of pain and not sleeping because of it. He can't be touched or fed at the moment by G-tube. She gave us a script for anti-biotics and also took a swab to see if there is something more complex brewing like a strep infection. We'll know by Tuesday for sure, but hope he will have some relief soon because of the anti-biotic. His spirits are good, despite it all. Feb 10, 2010 - G-tube site infection Jonny has been up nights screaming and kicking. His G-tube site looks terrible - swollen, red, and can't be touched. He's in a lot of pain, and also has a bit of a rash in the surrounding area of his tummy now too. I am hoping to get a prescription for anti-biotics this afternoon. The play I've been rehearsing opens tonight. Oy. Feb 5, 2010 - My heart is broken but it's still mighty strong That's the first line from Jonny's country music hit called "I have a great heart!" After a day of tests and test results (that he was not at all pleased to participate in) the verdict is back: Dr. Dipchan said she is very happy, the results were "excellent" and there is no reason why, from a heart perspective, he can't do anything other normal three year olds can do. What a relief! I was just thrilled to get the news. I don't know, but all this "I'm so tired" stuff we've been hearing from him lately had me a bit on edge. And the sweating. And the fatigue. All signs of cardiac issues if you're in the know and/or hyper-alert parents. But apparently not in Jonathan. There must be, I'm relieved to hear, some other explanation. Thank God his heart, despite all its issues, is doing really okay. Perhaps that other stuff is a result of anxiety? I don't know. But speaking of his anxiety, he really hated being at Sick Kids today. The only bright spot for him was my bribery (I promised to get him a new Thomas train afterwards for being good and brave). At one point he was crying and fighting the echo tech really hard, ("Get me out of here! I want to get out of here!"). He began kicking his legs and at one point, before I could grab him, he hauled back and gave her a direct shot right in the sternum that I swear knocked the breathe out of her. I should have been more embarrassed or apologetic, I know, but truth be told, a small part of me was like, "That's my future soccer star you're messing with!" Go, Jonny, go! Feb 1, 2010 - Hernia surgery, March 3rd Just got back from a long afternoon at Sick Kids. We saw Dr Fecteau who was clear that Jonny does have a large hernia in his groin and it must be fixed. She booked us for the OR for March 3rd. Despite Jonny's recent post-surgical anxiety, she believes sooner is better. She said he most likely will not have to stay overnight and it is a much less complicated endeavour than before. He will need to be sedated and possibly intubated, and will need pain mangement afterwards. She did say that maybe once he has this done, we can get him off the tube once and for all. Then, Dr. Fecteau "popped" the hernia back in to Jonny's abdomen right in front of me and then it bulged back out and I have to admit the room spun a bit. Barf. After this, we went to get Jonny's G-tube replaced as it has been in for 6 months and once it is left in longer, it becomes more difficult and painful to remove it. The procedure was scary and painful for Jonny and he told me both those things very clearly. He was really upset, but now is downstairs playing with trains and eating chips. I wish we didn't have to put him through anything else and will feel terrible taking him back to the OR. But the risk for a bowel entrapment is too great. Hopefully this will mark the end of surgery for a long time. Janis takes Jonny for his yearly echocardiogram, ECG, and cardiology consult on Friday. Fingers crossed. Jan 29, 2010 - Dance Class I a very pleased to write that Jonny is doing much better. We all are actually. But JJ's an amazing boy and when he bounces back he really bounces back! He's doing so much better in every way. It's such a relief. In addition, I'm actually quite grateful for the g-tube these days as it's helping us get the weight back on him that he lost when he was sick. To review, we have a big month coming up: Feb 1st - surgery appt, Feb 5th - cardiology appt, and Feb 23rd - psychiatry appt. We'll let you know how they all go. On a lighter note, I thought I'd share that Jonathan goes to his fourth week of "creative movement" class tomorrow. Eli started this when he was under three so I felt that Jonny should have the same chances and "normal kid" opportunities as well. Week one I thought maybe I'd made a mistake. He cried even to go into the church and clung to me on the chair (I now realize he was also very sick then). Week 2 he wouldn't get off my lap or go near the floor but watched the others with fascination. Last week he let me guide him onto the floor with the others, still needing me right beside him, but enjoying the music and some movement. He told Diane afterward that it was "amazing dance class!" Tomorrow I'm hopeful he'll relax and really be able to let go of me and let go of his fears and join in the fun with the other three and four years olds. If only he can I know he'll make a superb storm cloud - not to mention a beautiful galloping horse! Jan 18, 2010 - long week Jonny had no interest in eating, a raking cough, fever etc most of the week. Janis was concerned by Wednesday that we may not be able to handle this and he may need to go to hospital. But, by Thursday afternoon, we started to see a shift. His fever dropped and he seemed a bit more himself for short periods. He is painfully thin now, and still not back to eating, so we're relying on his feeding tube as much as we can. At the beginning he was vomiting his feed, but now he's keeping it down, although complaining that his tube hurts. Eli got sick Friday with fever and cough and loss of appetite. Janis has been sick throughout and by Sunday was really hit hard. So, we had a doctor visit from medvisit to check everyone out. In walks the ghost of Mordecai Richler. He was from anglo Montreal, full of stories, crusty, funny, with long greyish hair and piercing pale blue eyes. All he needed was a cigar... Upshot: Jonny's pneumonia may not have really respond to the anti-biotics because it took so long for the fever to go down, but it is on its way out anyway. His lungs are clear. JJ was prescribed two puffers to try and get rid of these awful coughs and wheezing. Eli is a marvel. It's possible what everyone has is a flu or some other virus, but Eli's lungs are clear and throat is fine. Diagnosis: "He's a very expressive boy!" Janis has an ear infection and bad cough still. She was prescribed anti-biotics and a nasal steroid which Eli can use also. Our Mordecai Doctor said that he had a patient who had a hernia like Jonny's for 42 years, and he plowed fields and had 8 kids. Admittedly it made me feel a bit better. His advice was that Jonny's been through enough, see if we can wait for any more surgeries. We'll see on February 1st, when we see Doctor Fecteau. We also have secured appointments with Child trauma and anxiety docs to see Jonny. Jan 11, 2010 - pneumonia and hernia Jonny had a very high fever and bad tummy issues, no appetite, and coughing all weekend (why why why WHY do these things always start on a Friday night?!). I took him to Dr. Campbell today and it turns out he has pneumonia. We started him on antibiotics tonight, as well as regular tylenol for the fever. He's had brutal nights, but is sleeping now at 8pm. Fingers crossed he has a good rest. Dr. C. also spoke to Dr Fecteau a few days ago. She believes that his hernia has indeed reopened in his groin (she fixed it when he had his bowel perforation at 3 months old). It's very dangerous to leave it. So, we see her February 1st and hopefully will know when the surgery will be to repair that. Apparently it can be a "day" surgery in a regular kid, and hopefully that can be the case with Jonny too. Dr. Campbell talked to Dr. Fecteau about Jonny's PTSD anxiety and sleep issues and they both know that another surgery is exactly what he does not need now, but it seems it must happen. In a weird way, now that I know it will happen, the focus can be on getting him started with a child psychiatrist as soon as possible. Get that process going so that we have tools to help him. I (Diane) start a rehearsal tomorrow. I am deeply wishing (some would say praying) for the anti-biotics to kick in asap. Jan 6, 2010 - hernia update Dr Fecteau has responded about Jonny's hernia. She said that it's possible that the hernia has opened up again due to the new abdominal pressure as a result of the closure surgery. Dr Campbell is worried this means more surgery for Jonny and so are we. We are trying to set an appt to see Dr Fecteau in the next months to find out more. We should also have a referral soon for a child psychiatrist to help with Jonny's sleep issues and anxiety. I start a rehearsal next week and as we gear up for that separation, Jonny is reacting. I hope his natural resilience will kick in for him soon. Sleep is still difficult. Jonny says, "Mama, it's hard to sleep". He can lie in bed with us for literally over two hours in the dark and quiet, with songs and back-rubs, and he doesn't even close his eyes or fall asleep. He's often up past 10, and if you know Janis and I, you know that we need to be asleep by then! The big news is something that Jonny has started doing! Something that we're all excited about and Eli particularly is proud of, "This is very important to me," Eli says, "it's a big step for Jonny and it's hard to do." Yes. Jonny has started peeing in his potty of his own accord! Yahoo! Jan 2/10 - Happy New Year This is a letter we sent to family and friends. I think it tells a little of what's been going on lately: Dec 19, 2009 - Waiting on consults We haven't heard yet from Dr Fecteau about Jonny's hernia or from Dr Campbell's office about the consults. With the holidays coming everyone is probably swamped. We'll be going to Sick Kids for a NICU developmental follow-up session on Monday and I'll bring it up with them and see if they can speed up the referral process. We are reading more about anxiety and trauma impact (thank you Heather and Dr C) and a lot seems to fit for Jonny. He's had a tough week in the daytime - Eli's Hannukah concert and other things that seemed just too much for him. He was pleading to get out. As for his sleeping well, the ativan seems to have worked. He had three great nights of sleeping right through! And then we took a break last night. Without any meds last night he was only up once, and was able to be soothed back to sleep! Until now, getting him back to sleep was difficult because he would scream or just refuse to settle. Let's hope he keeps being like this without the meds, but if he needs them, we have them. And we're glad for that. He's also been talking more about being sad, or tired, or needing a break. It's good he's using his words and articulating what he needs. He's been playing with Eli's Pokemon characters (good lord) and acting things out. Very interesting. Yesterday, when he was saying goodbye to his nurse he wished her a "Happy Monica" I think he was aiming for Happy Hannukah, but I'll take it. December 15, 2009 - update We went to see Dr Campbell, who was wonderful as usual. Here is my muddled brain's attempt at organizing where we're at: 1) Hernia - he does have a hernia on the right side and maybe the left. It is not that his testicles are ascending, but fluid from his abdomen is descending. Dr Campbell is going to email Dr Fecteau to see if the stitch she had put in when Jonny was in NICU (for his inguinal hernia) is still there or if she prophylactically put in a few stitches. If so, there is no need to worry. If not, there is a need to worry: a risk of bowel descending - causing pain and possible bowel obstruction. This would indeed require surgery. FINGERS CROSSED FOR DR FECTEAU'S ANSWER. 2) Anxiety - after some Hannukah celebrations where poor Jonny was barely hanging in there - using all his coping skills, but just wanting to go home, plus more terrible nights, it is clear he has developed an anxiety issue. Dr Campbell explained that all the processing of the trauma of his first two years that may have been happening more unconsciously are now coming out more presently, as a result of the surgrey and the aftermath. (And probably the same for Janis and I!) We're trying white noise at night, darkness, and play therapy. Dr Campbell and his nurse recommended some books and relaxation tapes for kids. Also, they're going to set us up with some referrals: - an appt with an opthalmologist for his photo-sensitivity - an appt with a child psychologist to deal with the anxiety - an appt with a child psychiatrist to see if its an anxiety disorder that will need medical treatment. We were also given a prescription for low-dose ativan to see if we can break the back of these sleeping issues. We tried it last night, and it helped him relax into sleep in a way he hasn't since the surgery. However, he was up in the night twice - once it was clearly about pain. So, we'll try again tonight but if it doesn't help his night-waking, there's no point in it. 3) His weight - we sort of just let that one be, but I can attest that he hasn't put much on since two months ago and actually may have lost a bit. We had no plans to take him off the tube until we're through the winter, so we'll just keep trying to get more weight on him. Today is Eli's Hannukah concert. He's so excited and so are we. I hope Jonny can tolerate the sound, people and light. After that, we're going to try and give Jonny more of the cave-like feeling that he needs, while still socializing him. We're also going book-shopping to see if there's something that can help him and us. December 5, 2009 - uh oh? Jonny is still having continual sleep problems and is definitely dealing with some emotional repercussions of all this. He is shy, hides from strangers (not such a bad thing, so do I, but he never used to) and is easily overwhelmed and overstimulated. Heather is working with him and Janis has some other ideas. The "uh oh" is that at bath time today we noticed that he might have a new hernia. Yes. I know. A big lump appeared at his groin area and we're pretty sure it was his testicles "going up" into his body. They descended later and then ascended again. Of course, it's Saturday night and we're not sure what to do. We may wait until Monday and try to get in to see his Ped. November 25, 2009 - Physio Jonny had his second physio appointment today and he did very well. Near the end, he said, "Okay, that's enough." We realized how much he does not want to be touched around his surgical areas. He and Eli are recovering from bad colds and coughs (not H1N1), but spirits are high. Jonny wants to return to nursery, but only if I stay the whole time, which is fine by me for now. Jonny's sleep is still lousy. We're trying to get some advice about post-surgical sleep issues. That's it for now. Check out the new photos on the photo page from our cabin. November 18, 2009 - THREE YEARS OLD! Jonny had his third birthday! We truly could not have imagined where we are now at his last birthday. At that time, he was barely speaking, he could not swallow most foods and was getting a bolus three times a day, and he had his big old tummy! Well now he's running around the house showing everyone his "gorgeous" tummy, yelling out the Unforgivable Curses from Harry Potter that Eli's taught him: "Crucio! Expelliarmus!" and down to a bolus at night. He has achieved so much and it is truly remarkable. I am full of gratitude and tremendous feelings of, well, feelings. It's a huge milestone. BTOB!! To update his post-surgical progress: we met with a physio today and will begin a six-week course of exercises to try and see how his abdominal muscles respond. I swear, I need to do them with him! His appetite has improved some, although his volume of eating is still not what it was. His sleep is still rotten. We spent the weekend at our cabin to mark Jonny's birthday and between the two boys, we were up at least a dozen times in the first night. Madness. But man, were we glad to all be there. And we had so much fun. Both boys are starting to own the woods - Eli charming snakes, frogs and cats; and Jonny loving the leaves and puddles and mud. Not sure what to do about the sleep issues. Janis and I are a bit punch-drunk. Jonny doesn't seem to suffer from all the night waking. His energy is amazing. Thank you for all the wonderful birthday wishes - for Jonny and me. What a difference in a year! We couldn't have gotten through it without all of you out there. November 5, 2009 - Surgical follow-up On Monday Jonny had his post-op surgical follow-up with Dr. Annie Fecteau. Jonny named her Dr. Clarabell after Thomas the Train's passenger cars (Annie and Clarabell). She thought he looked great. She explained that the lumps we feel under his suture line are internal stitches that take around 6 months to dissolve. I asked about Jonny's loss of appetite, his night-waking and she immediately asked if he was "anxious". Now, when a brilliant focused surgeon like Dr Fecteau, who is not known to be "touchy-feely" asks about anxiety, you listen. In fact, Jonny is anxious in that he won't come out of my arms and hides his face from stangers and other kids. He is easily overstimulated by sound and light and not interested in returning to play groups. She said appetite and sleep disturbance and anxiety are all normal post-op trauma responses. So, his trauma is real, normal, and may last a bit longer. But she believes it will subside. She also said that the muscles that she joined together are indeed the "rectus" or up-and-down muscles - the ones that are supposed to be there - they were just hanging out at his sides of his abdomen before not doing anything (yes, that's my version of medical terminology). The good news is that although physio therapy and hard work is recommended for Jonny, those are the right muscles so it should be possible for them to learn to be used. Very good news. So, we're pursuing physio through various routes. Dr Fecteau also suggested continuing to use his feeding tube for a while longer, although his weight was very good. She also highly recommended the swine flu shot because Jonny is a cardiac kid, let's not forget. So, Jonny is vaccinated, but the rest of us aren't yet. rrr. Also hard to believe and amazing is that Dr Fecteau said she doesn't need to see him until next YEAR. I tried to convey my gratitude to her. She has never been wrong, she is so sage, patient and obviously extraordinarily skilled. We can never thank her enough. Oct 22, 2009 - Gorgeous This week Jonny has had a lot of appts including seeing his core pedeatrician, Dr. Campbell on Wednesday for a full assessment. That evening JJ greeted me at the door saying, "Doctor Doug Campbell said my tummy was gorgeous! Gorgeous!" I love that he knows his whole name (and is no longer afraid of him - although he still hates that clinic and fights having to see any medical people - who could blame him?). He is still more easily tired during the day, up numerous times at odd hours of the night (sore?afraid?), clinging to Diane more during the day and clearly still has abdominal soreness and tenderness. That said, he is getting back to his bright light, his cute and easy laugh and his general monkey-impishness. Amanda, his Occupational Therapist, has been doing some research on Jonathan's abdominal muscle situation. Her physio friends suggested after he's recovered from surgery he will need some physiotherapy in order to train those muscles to do what they don't normally do. They said it will take a long time and it's best to start as young as possible. Amanda did some digging and found someone who might have the right experience for Jonny, at least to begin with an assessment. Diane here - just to add, the plan with Jonny's feeding tube is to keep things status quo - giving him a bolus at night - for another two months and then, if he's gained back the weight he lost in surgery and added some, we can begin to wean him from his final G-tube bolus. So, he'll have his feeding tube probably into the new year at least. Fine by us. He needs it. OCT 15, 2009 - Transverse abdominals Just thought I'd get your attention with our new word for the week. These are the muscles in the front of the belly that help you crunch or do a sit up. Jonny doesn't have these. Before his surgery we thought that he wasn't able to roll down or sit up without help because of his O that was in the way. It seems he still isn't able to now that his O is closed. Basically, when he wants to bend down (like to pick up a toy from the floor), he bends at the hips, or he keeps his back totally straight and bends his knees. I'm not sure if it's behavioural and he just needs to heal and adapt and learn, or if it's physiological: because of the fact that the muscles that were pulled closed over his organs are his obliques (which are the ones that move side to side) and he doesn't have any transverse one. Is it possible for the obliques (that are now in the front) to learn to curl or bend forwards? Or will he not be able to do that? Anyway, I got our OT Amanda researching this and I will try and get some info too from any other giant-O parents or kids that we know. All around Jonny is doing much better in the last few days. His infection seems basically cleared up. The steri-strips have come off his incision and we can see the whole long scar. Whew. His abdomen seems to be filling out a bit, stretching to make room for everything. He is still eating smaller amounts of food. He's still sore, and many times in the day he says, "I'm ti-i-red" and we watch his videos or lie down. He's wanting very much to be back to his old self, but he is not there yet and I think it confuses him. It's only been three weeks since the surgery and so much has happened to the guy. To be honest, I feel like he's somewhat traumatized in his own way. He's still frightened of diaper changes or touching his tummy or tube. He's up alot in the night and needs us to be close to him to be asleep. (As a result, I've decided that for my birthday, I want a sleep-cation. Like a vacation of sleep for a week, and everytime Janis or I wake up, a lovely attendant brandishing a mallet bonks us on the head so we slip back into unconsciousness - it's cheaper than Florida...). ELi is so helpful and concerned and the two of them "sneak" each other and are getting to play together more, which is the best healing for everyone. Please, if you have spare good vibes, send them to Jonathan's Constant Obs friend, Connor, who is starting his 6th round of chemo today. OCT 11, 2009 - Thanksgiving Happy Thanksgiving everyone. I (Janis) had an amazing talk with my mom this morning about Jonathan and how well his infection is clearing up. I told her how unnerving it was how quickly the infection spread and got serious but then it was amazing, once the anti-biotics took hold, how it cleared up. And now he's doing really well now. Mom told me a story of when she was 10 years old in Ottawa. A five year old boy she knew got an infection in his knee from a common cut. Anti-biotics were not available there at that time (this would have been in the late 1930's). The boys father had to drive to Montreal to get antibiotics but by the time he got back it was too late. I couldn't believe it! Oct 8, 2009 - Better Good news. Jonathan seems to be getting better. The infected area is looking less red and raw, his stomach incision wound is looking better and he has more energy. This evening he began dancing in the kitchen for the first time in weeks. Spontaneous dancing to children's music. Then Eli joined in and Mama got pulled in and soon we were all dancing in the kitchen instigated by Jonathan. If that isn't a sign that things are looking up I don't know what is. Now all we need is a better night, some sleep, and that would be just great. Oct 8, 2009 - Jonny's nights I guess this post is written partly as a preemptive apology to many of you who deal with us, and also as an update. Jonny's nights have been brutal since surgery. He is up numerous times screaming at the top of his lungs and writhing in pain. Sometimes it goes on for over an hour. We administer meds and try everything we can to get him back to sleep. After this last trip to emerg, we have hopes this will soon pass, but Janis and my faculties are suffering. It's a miracle that Jonathan lets anyone near him. And it is miraculous because he is the most sweet-tempered, delightful child. And big brother is so caring and ready for fun as soon as Jonny is. Oct 6, 2009 - Tube Crisis - Emerg and home again What a few days. Holy moly. Today I'd asked our respite worker Kaleb (aka Deisel) to come and watch Jonny for a few hours so I could catch up with some work and try and meet a Star deadline. We all had lunch around 1 pm and I got to work at about 1:30. At around 4pm, I went down to give him his antibiotic. He lifted his shirt up for me to put it in his G-tube and....No tube. It's gone! It had fallen out (I had a dream last night that it came out..). The hole was crusted over with a scab, and I couldn't get the tube back in. Not knowing what else to do, I called everyone I could think of and got answering machines, including his surgeon, Dr Fecteau's nurse's answering machine. In the meantime I tried to get his anti-biotic into him orally (not easy). Dr Fecteau herself called us back at 6pm and told us to get him to emerg. Despite the fact that he can eat, the tube is a safety net and we need it. In the meantime the lovely Patricia had stopped by with some pasta for dinner. Instead of dinner, she and Janis and Jonny headed to emerg while I stayed with wonderful Eli. The wait in emerg was not too long and the surgeon did come once paged. Janis said it took three people to hold poor screaming Jonny down and an unflinching surgical fellow to shove the tube back in, breaking the scab and somehow managing to do it. It was over blessedly quickly. On a somewhat more reassuring note, the surgeon also said the circ could take a couple more weeks to heal. He didn't seem too concerned with the the sore red look and felt that the antibiotics were most likely doing their job even if we weren't seeing much change. Jonny is sleeping now as is Eli. Janis is home and it's like these frozen hours of dread never happened. This is such an odd life sometimes. I personally feel so lucky to have Dr Fecteau watching over us, noodging us in the right direction, and to be blessed with such strong boys and spouse. And thanks to Patricia. Knowing she was there with Janis made it much easier to get through. OCT 5, 2009 - Is it working" 2am Jonny was up screaming in pain for over an hour. The circ site is so swollen and sore and it seems nothing we give him is helping. He isscreaming "I don't like it! I don't like it! No no!" over and over and kicking and fighting and it's amazing Eli doesn't wake up. Oct 4, 2009 - Home from SK once again (Emerg) Jonny's wound around his penis was not healing the way we thought it should be. After initially getting better, it began to get worse. He began fighting us, kicking and crying when we changed his diaper and put polysporin on the wound. "It hurts", he would say. Then yesterday afternoon in the bright light of Kelly and Daniel's while changing his diaper we all agreed, "That doesn't look good". Swollen, red and very sore looking. The very bottom of the closure wound looked bumped up and swollen too. We would have gone to a clinic last night but nothing was open. So we worked to get him to sleep, had a fitfull and screaming night and first thing this morning we called into Sick Kids 5B and asked their recommendation. The said, bring him in through emerg. So, to make a long story short, we've spent much of today at Sick Kids. (The ER has been renovated, by the way, very nicely! -Diane-)The emergency workers were excellent and we got seen very fast by a lovely, smart and conscientious doctor from England. He rcommended oral antibiotics for the infection and switch to IV if that doesn't work. He thought his O incision looked good but was concerned about his weight loss. [As we all are - He is so skinny his little hip bones poke out and you can see his ribs at the back and front]. We discussed plans for weight gain using the pump and g-tube and finally, he explained that the strange swollen bump at the bottom of the O incision was in fact the suture knots inside under the skin, each layer on top of the other. You don't usually see it, he said, but the weight loss has made it apparent. We then had to wait for Gen Surg to sign off. Apparently there was some mix up in communication and we waited and waited and waited (sweet patient Eli helped Jonny pass the time). Over two and a have hours later when I was beginning to get really frustrated a gen surg resident finally arrived. He agreed with the emerg doctor's assessment and confirmed the diagnosis. He did allow us a prescription of codeine on top of the antibiotic - in case Jonny continues to have trouble sleeping and we need something to deal with his pain (in lieu of hydromorphone). The GS res also said he was pleased with the healing of the major O wound which is good. Now Jonny is calm happy and home. Enjoying the security of the play area, at his little round table, playing with cars, trains and animals. Eli was swept out of the hospital by Kelly and Daniel who came by to drop off my cell phone. They were off to the home show at the ex and asked him as an aside if he wanted to come. You'd have thought they'd invited him to Hogwarts with the enthusiasm with which he said, "YES!". I don't quite get why he enjoys home shows so much but if it saves him from hanging around a hospital all afternoon I'm all for it. Mama and Mommy are making lunch and trying to function but really need to go and crash somewhere for about 48 hours of solid sleep. Aaahhh, wouldn't that be lovely.... Oct 2, 2009 - New Pics We're all looking forward to the weekend and just resting, staying close to home and close to each other and having quiet family time. Eli clearly needs his family together and strong and both he and Jonny are doing a bit better each day. Tonight they were so affectionate and sweet with each other. Hugging and kissing and wrestling and saying that they love each other. I can see we have lost ground with Jonathan's weight and feeding and we will have to take this one step at a time again. But for now I am just amazed and proud of him and how well he is doing. Despite being more tired than usual, and having some pain still and obvious tenderness around the wound site, he is active and bright eyed and getting his cute spirit back. Check out the new pics of his tummy and his little impishness.Sept 30, 2009 - taking it easy Jonny is a little pooped and is watching videos, eating a lot and chilling with me (Diane). Janis is at work, and as Eli mumbled last night while pacing back and forth among Jonny's toys, things feel "back to normal." Jonny occasionally says, "Mama, I'm very sick." or "Mama, I'm very tired." He had a painful and fitful night, but is doing well all things considered. I joked that Janis and I are not recovering as quickly as he is! Again, we could not be here without the help of our compassionate, generous, stunningly kind families, friends and community. Later (Janis): I think there is a delayed reaction to all of this. Jonny spent most of the morning in bed (which he never does) and was very quiet all afternoon as Diane mentions above. I found myself to be extremely tired today at work, a bit teary and low on brain power. And Eli was more emotional than usual this evening. I think we are all just kind of trying to release and return to normal - but we're not quite there yet. On the upside, Jonathan did not need the hydromorphone to get to sleep tonight. His pain seems to have subsided a bit and tylenol is doing a good job. Both boys were very happy to spend time with David, either playing with animals (Jonny) or watching SYTYCD Canada (Eli - he likes the guy with the broken finger...) Sept 29, 2009 - Home! It has been a whirlwind and surprising day. First the surgical fellow came in and said Jonny could go off IV and if he could eat and drink and poop and walk, maybe he'd go home in a day or two. Then, our surgeon Dr. Fecteau came in and saw Jonny eating corn pops and ketchup (I'm a good mom) and watching Thomas. She said, "Do you want to go home?" I couldn't believe it. She felt he was doing so well that he could finish his recovery time at home. They finished his IV, removed it, assessed him, fed him and we were discharged by 3:00 pm. We are amazed by this progress to say the least. It feels good but a bit surreal - after where he was two days ago - to now actually be home! Yesterday, he couldn't even walk! Jonny had no hesitations. After days of crying "I want to go home" when things were bad, well, let me tell you, when we were finally in the car and on our way he began singing Little Mermaid songs at the top of his lungs. When we got home he went straight to the family room to play with his cars and trains. And Eli has been thrilled to have us all together again. This evening after an early dinner and bath (they both really needed that) we gave Jonathan his dose of hydro-morphone thinking it would help him go to sleep early. After all, one of the side effects is drowziness. Here we are at 10:00 pm and he is still awake, making animal sounds and chirping observations - he's so stoned he can't sleep! We might be up 'til midnight at this rate. Uuuggh. We're going to have to see if he can manage on tylenol from now on because we can't do this again. Thanks again to everyone on 5B who took such good care of Jonathan. I'm tired but happy to be home. Tomorrow I will post more new pics so you can see how awesome his stomach is looking. Sept 28, 2009 - Happy Poop Day! We prayed for two things for today: no more vomiting and a bowel movement. Well, we got both and even more. The new IV re-hydrated Jonathan and perked him up significantly. He seemed much brighter this morning and didn't vomit all day. Then at around 3:00 pm this afternoon, Mr. major abdominal surgery, red faced and groaning, in waves of obvious difficulty, managed to crank out his first post-surgery, first-time-in-six-days healthy normal poo! We were so happy we actually danced. I think he was wondering what all the fuss was about. But he had us a little worried. Even the surgical staff admitted they were surprised and pleased. His bowel is working again and it's a wonderful thing! Then on top of it all he managed to walk, first on shaky legs to the door and then more confidently (with some support) back from the play room. The relief in room 5B-67 HSC has been palpable. Jonny, you've done it again! I think the collective prayers and energy sent his way are working. It has been a remarkable turn around from this time last night. Thank you to everyone. Thank you Bruce and Tracy for the food, Amanda for the trains, Netty for the chocolate and Kelly and Heather for the visits. And Daniel for taking Eli to the movies today (Yom Kippur) and showing him a lovely, special day off. Special mention to little Mr. Parker who turns six today. Happy Birthday, Dude! And for every milestone Jonathan passes, I must admit, I think of Connor down the hall, hoping he is ahead or close behind. Sept 28, 12:08am - IV in I just returned from checking in on Janis and Jonny at the hospital after Eli was asleep - following the inspired generosity of Kelly and Daniel. An IV was put in to a large vein in his arm. He seemed wiped and uncomfortable. Shortly after I arrived, he vomited again, and we realized that he really can't take anything in via g-tube, so the IV was the only choice for now. WHich means, that contrary to best-case predicitons that he'd be home from hospital five days post-op (which is tomorrow), his bowels are not ready yet. This is not unexpected, even though It is hard to hear news like this, and hard not to think of his history. He now hasn't had food since Tuesday and is losing weight but we're told he's clinically in the expected range and they want to hold off a bit before giving him TPN (IV nutrition). The big prayer right now, "Please poo, Jonny." Sept 27, 2009 - set back Jonny had a decent night, and was in good spirits in the morning. His IV had stopped working this morning, so it had to be removed. It had lasted a while, so it wasn't a big surprise. They switched his morphine to every 4 hours through the g-tube. They wanted to put in a new IV for fluids, but we asked to wait. We wanted to see if he could just take it in orally or through his G-tube. He still hasn't had a bowel movement, so we weren't sure if he could handle drinking and eating yet or not. He could not. After moaning, "Mama, I'm very sick," he vomited everything this afternoon repeatedly. I feel terrible. That old dread. I hope he poops soon and his bowel and everything starts working. In the meantime, the IV team is trying to get a new IV into him as I write this. I'm home with Eli who, just before we left, sang Jonathan to sleep. We couldn't get him to sleep, despite his morphine, because he was nauseaus. But ELi did it. Update - They could not get an IV in. He is too dehydrated and already is a "hard poke". They tried twice. (very hard on him). WHich made him vomit again. They're giving him a few hours to see if he can keep anything down, and if not, they will try again. Poor baby. I'm praying for his bowel to get moving and food to stay down. Sept 27, 2009 - am report It's early in the morning and Eli and I are heading over to the hospital with an arm load of bacon because Jonny's been asking for it so much and we are really hoping that today they will be letting him eat. I haven't been able to connect with Diane for a morning report. I presume they are both still sleeping. Will send an update when we have one. Sept 26, 2009 - Continuing to improve Quiet day in his new room. Jonathan spent most of the day sleeping today. He really needed it. It's good for healing too. But the nice thing was that when he was awake he was more of himself. There was more clarity in his eyes. They took out his epidural this morning and switched him to an infusion of hydro-morphine because the morphine was making him scratch himself until he bled. He is sitting up now. He sits in his bed with his food tray in front of him playing with his Thomas trains and watching DVDs and then he floats off the sleep again. They are allowing him all clear liquids now - gatorade, juice, jello, etc. But surprisingly he is not as interested as I thought he'd be, pushing the straw away. As the doctor said, sometimes their mind wants but their body is not ready. He is still asking for food all the time: bacon, cake, pickles, ice cream, bananas, even carrots! Speaking of food thanks to Sabba and Safta and Heather S. for the food drop offs. And to Heather G. for coming and spending some time so we could go for a walk outside around the hospital. Sept 25, 2009 - Long day, moving forward Eli said that he was going to use the Force to make time speed up while Jonny was in hospital. He said that we wouldn't be aware that time had changed, but it would be faster. Last night at 3:00am it felt like time was moving excrutiatingly slowly. But then today it was odd and freaky and surreal. In the end of day we got his catheter removed, his icky wound drain unstitched and removed, his extra IV blew so was removed, his heart monitors which were causing him a rash were removed since he had been so stable, and he was moved to his own room by the time Kelly and Dan arrived to have dinner with Janis and Eli! From a baby who you couldn't touch for fear of hurting or pulling on somehting, to one with only an iv and an epidural in a matter of hours! Time. Despite delicious food gifts, I had to make a decree of no food in the room because Jonny is so hungry - he's pleading for bacon and cake. Repeatedly. So it doesn't seem fair to eat in front of him. He's not allowed anything but water tomorrow still, and if he can have any signs of bowel activity, then Sunday may be bacon day. Until then, I pray ELi's time Force will work for Jonny. JOnny was also made to sit up in bed today. That was unbelievable. WIth that new tummy! It looked painful, but he really really wanted to "touch my trains..." Eli was thrilled to see JOnny and vice versa although Jonny was pretty tired and uncomfortable. His head is very sweaty and he really does not tolerate moving around at all yet. Earlier today, turning over made him vomit. Angels have appeared all day today: Denise!! WIth toys and shlep and delicious veggie stew, Netty with trains and cards, Ruth with fresh fruit and bagels, my parents with the precious cargo of Eli and Pickle Barrel sandwiches, Doris' prezzies were fully enjoyed today, as was Heather's book, Ali became totally a 7-year-old DUDE and owned Sick Kids with Eli, Julie's sweet calmness assessed and assisted, and Kelly and Daniel helped Janis and Eli to eat french fries far away from JOnny so he could sleep. Not to mention Patty and family, and Lois & Alice and Amy and BRUCIEEEE dropping off surprise sustenance. Plus SO many medical staff who know our family have popped by and offered enormous support. We've met other family's in constant obs who are in our hearts and wishes.(please send love to Connor, born two days after Jonny). Our surgical team are frank, funny, and on Jonny's side. Time may be moving in a clip and a drag, but along the way we appreciate the shout-outs and the food and the love. It's unbelievable. We're so terribly lucky. Sept 25, 2009 - Day two post op So, Jonathan's surgery is complete and went well. He is still in the constant obs room which is tough because it's loud and invasive and hard to sleep there. But they do monitor him very closely and that is appreciated. Diane called this moring and again, he had a rough night being woken up and thirsty and uncomfortable. But the pain is better. Hoping he can move to a private room today. He is recovering well but it's not easy. The first issue was pain management as this was a big surgery and his incision stretches from just below his cardiac scar (sternum) to below his diaper line. The O was giant and the hernia was significant and the surgeon said it was a "tight tuck". So it's painful. On one hand I'm glad they didn't have to use a mesh but on the other I do think about the pain and "de-hissing" (the stiches pulling out with the pressure) and his short breathing. He's on an epidural and morphine. The pain team came up to monitor and increased the doses yesterday. So he's better in that way. The next big issues is getting his guts working again (and morphine slows motility so that's a quandry). Apparently, any trauma to the bowel and it "goes to sleep". So now they are waiting for it his body to "wake up". They are watching for gas and some sign of him being able to excrete. Meanwhile he asks plaintively for water and apple juice every 10 minutes and it's sad and difficult as a mom not to be able to give it to him. He hasn't eaten since Tuesday night and he's a small boy already so you can imagine as a mother how hard it is to hear him begging for water or juice or ice cream and not be able to give it. He can have a small freezie every 6 hours and that's it. Diane gave him a cup of water last night and apparently he threw it up. He still has his epidural, his catheter, all his IVs etc. I look forward to him being able to get some more relief and better quality of life. Okay, that's the tough side. The up side is that we are now on day two post op and no other major complications (fever, infections, heart issues, etc) have raised their ugly head. I am praying in my secular way that all continues well. Thanks for all your support and prayers and comments on FB etc. You have no idea how much it means to us to feel that people out there are pulling for him! Sept 24, 2009 - Doing better (photos on photos page) I'm so tired so I hope a short update is okay. He had a better day today. They sorted out his pain medication and upped the morphine and it seems to have worked. Diane brought in the portable DVD player with Thomas the Tank engine DVDs which also helps to distract him. And he got three freezies. I felt pretty good about his progress when I came home (need to get some sleep). I hope he maintains tonight. Diane is staying over and will give an update tomorrow morning. Oh, and I posted "before" and "after" pics on the photo page. You can see that his tummy looks so different. It's long and flat....unbelievable.Sept 24, 7am - rough night Janis just called. Jonny had a rough night. She said he was so brave and sad. He wanted apple juice and water but he's still not allowed for maybe another full day. They upped his morphine this morning, and he's sleeping now. Janis got very little sleep at all in the rocking chair. All the memories of NICU and 4D are rushing back. The sounds of the paper towel being ripped at 2am at the washing station, the code blues, the pumps etc. Taking Eli to school then rushing over. Eli's very resilient. He dreamt about Hogwarts and Harry Potter. So did I. September 23, 2009 - Omphalocele Closed This morning we arrived at Sick Kids at 7:30 for Jonny to have blood work, and then he went into surgery at 10am. I (Diane) was allowed to accompany him into the OR and make sure he was comfortable as they anesthesized him, which was a comfort for Jonny and for us. Dr Annie Fecteau came to see us at 2pm to say that the surgery went better than she expected. She was able to close his entire abdomen without having to use a mesh. We were incredibly relieved. Our Beat the Odds Baby did it again! Dr Fecteau said it was a "very tight tummy tuck" and that under his omphalocele area was his liver. The liver is usually tucked under the ribcage, but his is smack in the middle of his belly. She did not manipulate anything if she could help it and left the bowel mostly untouched, which is good for recovery. The scar runs from the top of his sternum all the way down to below his diaper. Because the area is so large, the epidural that they administered for pain management was not enough to help ease his pain. Jonny spent 4 hours in post-op recovery as his pain was assessed and managed and vitals were closely monitored. The nurse had two little boys too, one of whom is also a big Thomas the Train fan, so we had a lot to talk about as all around us little ones were wheeled in and out in states of confusion and pain post-op. Jonny was moved up to the constant observation room on the 5th floor just before 7pm. He is on morphine and an epidural and gravol and tylenol. He has a drainage tube coiled under his skin of his belly, and a catheter and heart monitors and two IV's. He is sleeping and occasionally waking in discomfort and then off to sleep some more. He is thirsty but not allowed to eat or drink until they can be sure his bowel is working, which we hope will be tomorrow. Not sure when he'll get his own room, but Janis and I are happy he's being so closely and carefully watched. Janis is staying the night in a rocking chair at his bedside while I stay with Eli. Thank you all for your amazingly kind wishes and thoughts. We will keep you posted as the next three days are crucial to his recovery. September 15, 2009 - Final Speech assessment! Today I took Jonny to see Lisa for his follow-up speech assessment. What an incredible year it's been for him. He can now communicate with peers and family and he sings, talks, plays, and tells us the story of "Are You My Mother." So much for a kid some thought would never speak! Lisa said that his language (sentence structure, phrasing) is above average for his age, as is his comprehension! The sounds that he still has trouble forming like "l, th, ch, sh, ss" are all age-appropriate and should come with time. So, he is now discharged from speech therapy! Way to go, Jonny! We are so grateful to Lisa Grover's fierce intervention on his behalf through Toronto Preschool Speech and Language. As Jonny himself said when we were at the cabin, "Mama, I..can..speak!" By the way, Jonny has informed us that we are all trains from Thomas the Train and Friends. He is Thomas, Eli is Percy, I (Diane) am Emily, Janis is Edward, Dadda James is,um, James, Nurse Julie is Mavis, and caregiver Kaleb is Diesel. Jonny remembers all this and sometimes says things like, "Percy is at school. Edward is at work, says me..." September 14, 2009 - Closure Surgery in a week - Preparing the boys Jonny's closure surgery is a little over a week away (Sept 23rd is the planned date) so the time has come to begin preparing the boys. We got some great advice from Heather, who has worked with the boys for so long and knows them so well. We're really lucky she has knowledge in this area and wanted to share what she said. Others in this same situation - preparing a little one for surgery, or preparing a young sibling - might find it very helpful as well: "I would say keep your explanation simple and honest but age appropriate.Your explanation of surgery can be that it is one of the ways to help people's bodies feel better when they are hurt or need some extra help. When people have surgery they need to stay in the hospital and have sleepovers there until their body feels better. Try to stay calm when having this discussion. The last thing the child needs to think is that surgery is a "hush hush" or shameful experience. They can get this idea if the conversation is awkward or cut short due to the parent's anxiety. Encourage the child to ask questions so that they get the idea that surgery is not a bad or negative experience. August 7, 2009 - Update July 11, 2009 - Progress and Surgery Date We had a consult with Dr Campbell, and he recommended that we take a new direction with Jonathan's feeding. Amanda the OT felt the same way. And Joan our dietician totally agreed and sent me some reading information and suggested I might need a glass of wine for fortification, which I drank whether I needed it or not. The suggestion was that trying desperately to get calories into him all day, allowing him to graze, will never work. He just won't get hungry enough to take in larger volumes of food - and my layman's extrapolation is that he needs to be hungry to take some risks with swallowing. In effect, I was given permission to step back. We put him back on full bolus night time feed and took the pressure off him in the day. He's given three meals and some snacks like a regular toddler. And like in the case of Eli at his age, we also "encourage" more calories and more eating - like when he's distracted by tv - and we add protein powder and other fatty cheats. He is doing great. He's even swallowing some meat like hot dogs, and some cheese, like the cheese off of a pizza. He likes fruit, especially bananas - like Boots the monkey on Dora. So, we've started to slowly wean his nighttime bolus. Now, instead of getting 250 cc's plus protein powder, we're trying 150 cc's (and watching for any weight loss). We see Dr Campbell again on Tuesday to talk next steps. I'm especially grateful for Amanda's suggestions, guidance, ideas for calories, and confidence in Jonathan. Her perspective is invaluable. And she thinks he will do it. We also have to change Jonny's G-tube a week Wednesday. It's been in over 6 months and has to be replaced. Not a pleasant process for poor JJ. The next news is that his surgery is schduled for Sept 22nd. Dr Fecteau described the process in more detail, and the risk that worries me the most is the possibility of the liver or bowel becoming adhesed to the scar tissue that is now covering it. There is risk in "freeing" the bowel, that it could tear. She was clear that she will simply repair it in that case - but it drives home how not simple closure is. She thinks he'll be in hospital for about 5 days. And from our conversation, I gleaned that she doesn't want us to get our hopes up that his abdominal muscles will be completely closed over his organs. They may need to put in a mesh which eventually dissolves and is covered by some scar tissue. There are other methodologies which I heard about and other complications, but I'm not going to worry about them at the moment. In fact, we're not telling Eli about the surgery until much closer to. And we need to figure out how and what to tell Jonny... Because surgery is in Sept, and they won't consider removing his tube until at least a few months after that (IF he is off the tube by then), we have to re-think a weaning plan. We would like to show them that he can be okay off of the tube before the surgery if possible, so we'll have less time to wait until it needs to be removed. But, bottom line, I'm beginning to strongly believe that it will happen, but maybe on Jonny's own unique timing. His speech is fantastic, funny, interesting, perceptive. And he could not be more loved by his devoted brother. Janis promises to add pics. Diane May 26, 2009 - Progress, and Jonathan's sandals In the last month, Jonny weathered his G-tube site infection and a gastro bug that felled the whole family. He made it through on his own. Since his gastro bug, we had begun reducing the volume of his night-time bolus feed, but yesterday we weighed him and he dropped some weight - more than we're comfortable with, so we are back up to the full night time bolus, until I speak to Amanda our OT tomorrow. We knew he'd go backwards, but we're not sure what the next step should be. In general, getting calories into him in the day is still a challenge, but it's so worth it. His speech is improving dramatically. He's stringing words together and really communicating. He's got some of the beginning consonants, like 'h' and 's'. We're working on 'f'. Jonny is beginning to assert himself and have very specific tastes. Yesterday we went shoe shopping. I assumed we'd drop a bundle on Cars shoes for Jonny because he loves his cars and trains so much. Well, weren't we surprised when he walked into the store and made a bee-line for some shiny, golden, light-up Dora sandals three sizes too big. He put them on the wrong feet and refused to take them off. Nothing could tempt him. Not even $35 Lightning McQueen sandals. Finally we gave in and found him the gold-lame Dora sandals in his size. Even switching to the right size caused tears. Then he refused to take them off at the cash register. He insisted on wearing them yesterday all day, in the house. He asked for them as soon as he woke up, "Where me pretty shoes?" By the way, Eli is fully consumed by Star Trek - including Deep Space Nine, which even a nerd like me gave a pass to. We went to our cabin last weekend and the boys had a great time, played together so well, and got lots of bug bites. April 23, 2009 - G-tube infection and progress Two days ago, I (Diane) noticed that Jonathan's G-tube site suddenly looked horrible. Red, swollen, with lots of bulging granulation tissue, and weeping fluids. The worst we'd seen it and Jonathan was very articulate about how much it hurt. He did not want us to look at it or touch it. We are giving him antibiotics and today it seems a bit better. The complications of a complicated situation. He is progressing with his g-tube feeding wean. He's down to one bolus through his tube at night and he's maintained his weight. It requires tricks and inventiveness to get the calories in him - including a diet rich in ice cream and protein powder (my dream diet). Today, he did something that amazed me. Jonny loves meat. He chews it and bites it voraciously, but does not swallow it. Today, for the first time in his life, he swallowed some small bits of meat! Okay, it was pork kolbassa. God bless trayfe. He's also started a new block of classes at Toronto Preschool Speech and Language. He's working on getting the consonant sounds at the beginning of words. Currently, he skips making them. So "at" can be cat or hat or sat. This will require some effort, but I know he'll get it. He's stringing more words together in sentences, too. This recent tube infection incident makes us even more determined to get him off his feeding tube as soon as he can handle it. I could NOT have imagined even writing these words three months ago. I'm reminded of how we refered to Jonathan when he was first born and his SAT's were in the nineties: BTOB- "beat the odds baby." April 1, 2009 - Apologies for taking so long to update! Much has gone on in the last month or so. Here are some highlights: - The G-tube wean (from 3 bolus feeds by G-tube a day to two bolus feeds by G-tube a day) went very well. Jonathan is now chewing and swallowing more foods - including mango, blueberries, raisins, noodles. - We all got the stomach flu in February and the great news is that Jonathan did not end up in ER! He pulled through on his own and Janis and I learned a few tricks from the last time we were in ER, and we were able to keep him hydrated. Initially, he lost a lot of weight and did not have much of an appetite, but in the last few weeks, he gained back everything that he lost and then some! - We took him to see Dr Campbell yesterday and he is now - wait for it - in the TENTH PERCENTILE for weight, height and head circumference. For those of you who've been following this, it's remarkable! Jonny was barely on the charts for his first year, and then he was hanging out at about the third percentile. To make such a big leap in growth is huge! - To that end, we are now moving forward with weaning the morning bolus - so he will be down to one g-tube feed a day. This will require a lot of effort, creativity, monitoring, and persistence for those of us who try and get food and calories into him. But if he maintains his growth with this wean, we will really be on our way. Thank you for the optimistic nudge, OT Amanda. - His speech is also improving. It may be hard for anyone but Janis and I to understand him, but he is talking and saying many many words and beginning sentences. We will be starting a new block of Toronto Prechool Speech and Language in a few weeks and we anticipate more clarity and verbosity. (Like the rest of the family). - Jonathan is loving Eli and attacks him and jumps on him and bullies him. Eli is so kind and loving and he whispered to me the other day, "Mama, I have a secret: Jonny is funny." - Jonathan is also spending more time at Tina's nursery and I can now leave him there for about 20 minutes at the beginning of the day and he accepts this separation. "Mama go, Mama back," he says. He participates actively in the nursery routines, and he is socializing more, although cautiously (which I am happy about), with his peers. At the park the other day, Jonny decided to try going down the slide on his tummy, like the toddler in front of him. My heart was in my throat and I thought I would pass out, but he did it and then he adapted his sliding style, so that he actually went down on his elbows and knees instead of his actual tummy. It was amazing. Passover is approaching and we're thrilled to be spending time with my sister and her family, including her two kids. Eli is working on a "comedy version" of the Ten Plagues to present at Passover dinner. We remember so well the Passover two years ago when Jonny was still in the NICU, and then the passover last year when he was struck with the Rota Virus and ended up in Sick Kids on IV for four days. We know how blessed we are. Thank you all, and happy spring.
February 13, 2009 - Happy Valentine's Day - and more importantly, HAPPY BIRTHDAY STEPHANIE!!! The bravest Princess in the Realm is 7 years old tomorrow and will be getting a day pass from the hospital for her birthday party. Ckick here to read more about Stephanie and see her picture. Today was Jonathan's cardiology day. He was sedated in the morning so he could have an echo cardiogram and electrocardiogram. The results were very good. The patch of the hole between his ventricals is working well, and his heart function and pressures are stable. The sedation was unpleasant and unsettling for Jonny and he was quite floppy and woozy for hours afterwards. As with visits to the G-tube nurse or his pediatrician, Jonny is very frightened and saddened by these procedures. He knows that something is happening to him and no amount of "this won't hurt a bit" calms him. It was a long day, but we are very happy with the results of all the tests and his cardiologist, the wonderful Dr. Dipshan, says we don't have to have another appointment for a full year. On the eating front, we also have positive news: Jonny has been swallowing small amount of select solid foods lately! He loves bits of strawberries, chips, cookies, cheesies, and other crunchy things. And he actally ate three noodles from his chicken soup last week! This, of course, is not enough to live on, but is a big improvement and it shows that he is able to swallow. We are eliminating one of his daily pump feeds to try and encourage him to eat more orally. So that means he only has to be hooked up to his pump twice a day. We've been at this for a week, and he has not lost weight, so that is very good news. We've discovered that he likes to leisurely graze in front of the tv in the afternoon - as do we all... We will keep at this, and hope that he will begin to register hunger and satiation. He also got his G-tube replaced with a smaller one that seems to move around less and it seems that the irritation around his g-tube site has diminished as a result. January 5, 2009 - Happy New Year. Jonathan is the patient of the month on the Sick Kids Foundation website. Click here to view his photo and story. Thanks to Lisa Charendoff for her lovely piece on Jonny. It took me back in time and brought tears in my eyes to think about how far he's come in two years. December 21, 2008 - I sometimes can't believe we're still posting here. When we built this site in 2006 we imagined we would track the really tough time of ups and downs of Jonathan's first year. But here we are over two years later! We didn't understand that this journey - taking care of a little one with special challenges - really must be measured in weeks, months and years. We are grateful and relieved that life is so much more normal and easy these days (especially compared to that first year) but there still remains the urge to reach out and connect and share our experiences every now and then. It's the beginning of Hannukah and it's Winter Solstice and the days are dark and short and the need for light and connection is strong. Having Jonathan in Sick Kids for one Christmas (and nearly two), I will always think of the little ones and their families in hospital at this time of year. No matter how much effort the hospitals make to bring cheer (and they do so much) it is sad, lonely and hard to be a child in hospital at this time of year. So, my heart and spirit reaches out to all of you getting by one day at a time and praying everyday for a miracle (and a way out). I think about all the people for whom this time of year is extra difficult. I remember the little baby who died on Christmas day right next to our crib. I think of dear sweet Heiko who was very sick at this time last year. I wish there was some way to offer consolation to his family. I also think of all the hospital staff, like Nurse Kelly Roddy, who will be working right through the holidays doing their best to make life a bit easier for those with no choice but to stay where they are. This can be a tough time of year for so many - so on the other side of the coin it is a good time of year to count blessings, be grateful, appreciate what you have and reach out to others. In that spirit Diane wrote a holiday version of her column, asking people how they get by during this time of year. I found it very inspirational and so I'd like to share it here with you today: TheStar.com | living | Blue holiday for many December 13, 2008 - New Spring plan - We had our care conference with Jonny's team. It was awesome! Dr Campbell, and Jonny's OT, Amanda, suggested that since Jonny is progressing with his speech, now would be the time to see if he can progress with oral feeding too. The idea is to try and wean him slowly off his G-tube, instead of using the next six months to try and fatten him up for a spring surgery. Dr Campbell consulted Jonny's surgeon, Dr Fecteau, who agreed that we could postpone his surgery until next fall, and try and maximize this development time to see if we can get him eating more orally. So, come Januray we will try and get a plan in place. "Weaning" off of a g-tube is complex and individual, and it may mean a bit of weight loss for Jonny. Joan, our dietician is all over it. We are keen to try! Jonny is using more "proto-words" - bits of words like "ocogile" for crocodile, and "mbah" for zebra. He's expressing himself more and more, and singing (!). We have found respite workers to cover me in rehearsal and beyond, so that is a great relief! We can't believe how well Jonny has done in this last year. What a change. Please send your positive thoughts to Stephanie who is back in hospital with unmanageable pain. November 16, 2008 - Happy Birthday - Jonny has turned two! I was looking at photos from his big birthday bash last year. We were surrounded by many in our community and our NICU family. Jonny was on a GJ tube continuously for 20 hours a day. He could not stand or walk yet. And we were so grateful to have him with us! In retrospect, we were still very much a Sick Kids family. Here we are, one year later and Jonny is a determined, happy, loved little fellow. He runs around on his toes, sashaying side to side (due to the lack of abdominal muscles in front), hugging and tickling us, playing with cars and animals ("wow" he says about a particularly nifty elephant), vocalizing, tasting icing, patting his brother's head when Eli is upset. He's still got that piercingly open NICU stare and smile, but now he adds his own crinkles. He's also clearly asking that we take his G-tube "off". We promise him we will as soon as he can swallow. AND the big news is that he is taking these little tiny micro bites of dissolvable solids like cheesies and animal crackers annnnnd swallowing them. Just itty bitty baby steps, but he's getting it on some level. Who knows where we will be next birthday. p.s. We are finding homecare for Jonny to still be difficult. I (Diane) am trying to do more work and I do have a job coming up. Janis is fully engaged doing great work at her new job with the SLF. We're looking for one other respite worker to compliment our wonderful, brilliant Heather who is deep into her Masters program. If anyone out there knows someone keen, loving, trustworthy, and medically trained or trainable, please let us know! November 10, 2008 - "owwwww" - Jonny was sick this weekend with weird symptoms - he kept pointing to his G-tube and saying "owwww", he was sporadically vomiting and had fever. This morning he woke up covered in a rash. Naturally we were worried. The dread that accompanies unknown illness with a kid like Jonny is palpable. His pediatrician was away so we went to a hospital clinic. They think he has Roseola, a possible ear infection and possible G-tube site infection. We're loaded up with anti-biotics and will watch Jonny to make sure this is really what's going on. Today Eli had a PD day and was a real trooper shlepping to St. Joseph's hospital with us. At this moment, Jonny seems to be full of his old spirit, playing and drawing on the kitchen cabinets. Phew. November 2, 2008 - Closing on Two - Jonny's second birthday is coming up on Novmber 14th. I cannot believe it. He is so awesome. A quick update: THe speech classes are starting to pay off. Jonny can now say things like "off, in, up, apple, ELI, lala, ow...." They don't sound like we'd say them, but he is progressing, and it's great to see. Swallowing food is much the same. He still likes his liquids and soups, and still loves to munch on all food, but not swallow it. I can sense that he is starting to comprehend more about the idea of swallowing, but is still not ready. The G-tube boluses have helped him put on weight. He's finally broken the 10kilo mark!!! We have a "care conference" that we've set up with his OT, Pediatrician, CCAC lead, dietician and other team members at the end of the month. It's really exciting because we'll all be in the same room and try and map out goals and a plan of care to help him move forward. Will write more later but am really feeling grateful grateful grateful as the two year mark approaches. Janis will post some pics later today. Sept. 27, 2008 - Surgical Follow-up - We had our follow-up appt with Dr. Fecteau on Monday. Jonny gained half a kilo by their scale in a month. So that's great. He's recovered from the tummy flu weight loss and then some. I (Diane) believe the protein powder that Joan recommended is really helping. We have been feeding him more by G-tube lately and it does diminish his appetite, unfortunately, for eating orally. We have to hang tight until he can put a bit more weight on and then I want to reduce the G-tube feeds again to try an encourage him to eat his liquid lunches (not that kind of liquid lunch. Mind you, if he'll swallow it....). Dr. Fecteau would like to wait until the spring to do Jonathan's abdominal wall closure surgery. Fine by us! Jonny looked at me while I was buckling him into his car seat and connecting his G-tube the other day - the expression in his eyes was deep, wise, sad, unflinching. He pointed to his tube and stared at me. I said, as calmly and gently as I could, "I'm sorry. When you can swallow food we will take it out. I promise. I'm sorry. I love you." I kept repeating that until he looked away. Later he pointed to his tube, then lifted up my shirt exactly where his tube is, and did the "where is it?" gesture - as in, where's your tube, Mama? Sept. 21, 2008 - Speech Pathologist Appt - We had our speech pathology appointment through Toronto Preschool Speech and Language last Thursday. The new speech OT assessed him thoroughly and her diagnosis made sense to me (DIane) while she was testing him. But it also was hard to keep dry-eyed. She said he has severe motor-control issues around learning to form, organize, and plan sounds. He makes sounds on his own, and will yell out MAMA or BAAAA or his brilliant donkey imitation, but he cannot repeat a specific word, like "bus", and he's still not forming many consonants. She raised concerns about where he was at physiologically - in his lips, jaw, tongue, and nasal-pharynx (connected to the soft palate). These are things infants learn automatically when they don't have an NG tube down their throat or are isolated in hospital for nine months. When I walked into the speech assessment, the therapist hadn't received Jonathan's specific and important medical history. She didn't know that Jonny wasn't swallowing solids and had been in hospital. We'll be joining a weekly group and hopefully get some concrete advice. I'm reminded that when our OT Amanda started with him once he was discharged in August 2007, he could barely sit up and he didn't seem to realize that his legs were a part of his body. I couldn't imagine her being successful. Each week she arrived with crazy exercises, sheets full of them specifically designed for Jonny's body. And Jonny did it. Now he even throws himself down on his tummy (on a bed)! Jonny is a great communicator. He's progressed so much in his usual unique, odds-defying way. I know he will keep going. And I know that his continued progress depends on creative and unique ideas. This past week, he has come up with more new gestures and signs. He loves doing Biiig and little, cold, jump, move, sleep, and frog. Sept 10, 2008 - NICU Development Follow-Up - Jonny is doing much better. He's gaining weight thanks to Joan's suggestion of protein powder and higher volume of feeds. Eli started Grade One and lost his first tooth and wants to be a time-traveller when he grows up, to see what colour the dinosaurs' hides were. Jane and Katie's birthday is tomorrow and Janis' is next Tuesday. My article about our night in ER will be in the Toronto Star on Saturday www.thestar.com/article/496268. Life is marching on! We went for our developmental follow-up appt at Sick Kids yesterday. Jonny is doing great. Anne-Marie, who we greatly respect, had strong positive comments about his physical and cognitive progress. We met with a speech pathologist who suggested that maybe Jonny is having trouble organizing vocally. She felt he scored very high on receptive communication. We agree! We all hope for progress on swallowing different textures, but the best advice these days is to be patient. We have an appt in a few weeks with Dr. Fecteau to see how his weight is doing and determine when he will have his closure surgery. Aug 25, 2008 - Surgery Postponed - We had our surgical follow-up appointment with Doctor Annie Fecteau today. She was pleased with a lot of Jonny's progress. (He was subdued because of his tummy virus. He's still vomitting and tired.) But she was concerned that he has gained very little weight since January. She doesn't want to do surgery on him with so little "reserves". She wants him to be bigger and stronger. We will see her again in a month and maybe surgery may be postponed from this fall even until next spring. Although we're not in a rush to have this surgery, we were surprised and disappointed that it's being postponed because he is not technically strong enough. This month will be about trying to find ways to get weight on him. Janis has always been concerned about his slow weight gain. But we don't want to just give him tons more G-tube food and lose all the progress we've made with getting him to eat more (liquids) orally. So we're a bit at a loss as to what to do to get weight on him. We're going to focus on getting him through the tummy bug and consult our wonderful dietician Joan and try and come up with a plan. Yesterday was a tree-planting picnic in memory of Heiko. Janis had the tummy bug so wasn't able to be there, but Eli and little wobbly Jonny and I made it. It was incredibly moving to see this community of loving people surround this remarkbale family. And to see Heiko's strong little tree growing between the flowing Humber river, and the kids' playgound. Aug 23, 2008 - Triumph and Setback - We had a successful trip to Halifax. Our first attempt at leaving the province since Jonny was born. Both boys did amazing on the plane, and we had a fantastic five days. Wendy and Carol hosted us and treated us like queens and kings. Eli turned 6 and had his first loose tooth! We canoed, kayaked and swam in the freezing Atlantic. The day we got back, Jonny started vomitting. We did not want a repeat of what happened with the rotavirus, so after 12 hours of watching and agonizing, we realized he was dehydrated and we took him to Sick Kids emerg. He had to get IV fluids and meds and we stayed overnight. Suffice to say, last night was a sleepless and surreal night in ER. He was discharged before noon (today, Saturday) and is doing much better. We are all head-spinning and a bit weary, but we weathered it. We can never forget how things can turn on a dime. As Dr. David Lasko said in NICU, "as quickly as they turn sour, they turn sweet." Aug 15, 2008 - A Year Since Discharge - Miriam and Jane are right! No news is good news. And there has been a lot of good news in the Jonny dept recently. In fact, he just spent a week up at a cabin in the woods and loved it! As long as we can charge and keep his pump running when he needs it - his nutritional life source - and can keep his formula and meds safe and clean and a few other complexities that one doesn't usual have with children, he (and we) can manage a very "normal" existence for Jonathan that includes frog hunting, playing with cars, digging in the mud and riding in the wagon. I'm proud of him, and I'm proud of Eli and frankly, I'm proud of all of us, for working hard to ensure that Jonathan gets everything he needs plus has as normal a life as possible. Do you know it was one year ago this week that he was discharged from hospital after almost nine solid months? And now, at times, it's like he was never there! Sure, he's got issues. And he will for a while. But thinking about where he was then, and where he is now is almost head-spinning. So all of you who have little ones who are in difficult places, hospitals and ICUs and struggling: hang in there. As a wise woman once said to me, no matter how difficult, this time will eventually pass. Try to take it one day at a time and know that it will all be worth it in the end. Two dates to mention: Sunday August 24th, from 12-2 p.m a Commemorative ceremony for Heiko. Pic nic potluck in Etienne Brule Park, which runs along the Humber River. For more information: jamesbooth@sympatico.ca. Monday August 25th - surgical update appt for Jonathan with Dr. Fecteau. This is when we will get an assessment of how he's doing and when she expects to book his next surgery. We'll report more then.
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