tag:blogger.com,1999:blog-27256568280109725142024-03-13T06:11:38.918-07:00Tim's Variety PlateThanks!http://www.blogger.com/profile/16340801247580694500noreply@blogger.comBlogger142125tag:blogger.com,1999:blog-2725656828010972514.post-11009494281968848162015-02-09T13:02:00.000-08:002015-02-09T13:03:07.513-08:00Behind the Curtain - Part I<div class="text_exposed_root text_exposed" id="id_54d91fcf8da4a6e45368908">
<span class="userContent" data-ft="{"tn":"K"}">Here it is CHD Awareness Week again, and I have been giving some thought about what to write. Last year I posted each day about each of Tim’s surgeries, but I feel like that chapter has closed. Tim’s heart transplant was indeed a gift of life, and I worry less about his heart, but more about things I could have never predicted. <br /><br /> I thought this year I’d try to answer the question we hear so ofte<span class="text_exposed_show">n, <strong>“so now what, is he just normal?”</strong><br /><br />When Tim was waiting for a transplant, the nurses and doctors told us that a transplant is not a cure, it’s just trading one chronic medical condition for another, the difference being that with a transplant the patient has a much better quality of life. For Tim this is 100% true. His diseased heart could not support him very much longer, and he was lucky, he received a heart that was a perfect match for him.<br /><br /> Tim looks like an average 8 year old. He is definitely on the small side, but can physically do anything he wants to do. On the inside, it’s a different story. For us, the cardiology part is familiar – daily medicine, lab work, and frequent check-ups. I think what has surprised us are the new specialties we must become familiar with - neurology, nephrology, neuropsychology and now infectious disease.<br /> Following his transplant, Tim had a brain bleed, which has left him with a seizure disorder. There seems to be no specific trigger for them, and they are pretty well under control with medication. Still, he has been rushed to the hospital 3 times after becoming unresponsive. Also, the medicine for his seizures is tough on his kidneys, so he sees a nephrologist to make sure his kidneys are healthy. We have been fortunate that despite his immunosuppression, Tim has been able to weather the usual colds that float around school, but this fall he contracted c. diff, a nasty intestinal infection that is not a danger to you or I, but quite dangerous for Tim. He was treated and recovered, but seems to have had a relapse in the last few weeks. The result of this is he lost about 10% of his body weight, and has felt much less than 100%. Additionally, the medicine to treat this infection interacts with his transplant medication, meaning he has to have blood draws at 7:00 a.m. every several days. We are seeing an infectious disease specialist this week to figure out a new treatment plan.</span></span></div>
christinehttp://www.blogger.com/profile/08133654020783051014noreply@blogger.com1tag:blogger.com,1999:blog-2725656828010972514.post-73636245691968029092013-10-17T14:28:00.001-07:002013-10-17T14:28:12.242-07:00Only the shadow knows...We've been quite delinquent in posting here. Our last post was six months post transplant, and now Tim is very nearly SIXTEEN months post transplant. How's he doing? In a word - wonderful!<br />
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Medically, things are pretty stable. He has shown no sign of rejection and has weaned some of his medications. We did have a scare this summer when he had another seizure, but after an overnight stay in the hospital, he's started taking his anti-seizure medication again and probably will take it for a while. Seizures are hard things to figure out. In Tim's case, the part of his brain that bleed after his transplant is just sensitive, and it seems that being overly tired or worn out triggers his seizures, so we're doing our best to avoid that. During our last visit, his echo showed a shadow over his heart, and a repeat showed the same thing, so that's our next issue to follow. Chances are it's nothing, but Tim will have to have an MRI to give us more answers. </div>
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On the kid front, he's grown a lot. I'm not sure just how much, but several inches and several pounds. He spent the summer making up for lost time - learning to swim and ride a two wheeler. In September, Tim turned 7 and started the first grade. This fall he's been busy playing soccer. I'm going to try and catch up on posts, and share some more pictures of all the fun stuff we've been up to.</div>
christinehttp://www.blogger.com/profile/08133654020783051014noreply@blogger.com1tag:blogger.com,1999:blog-2725656828010972514.post-5899015435125253632013-01-08T16:19:00.001-08:002013-01-08T16:19:11.133-08:00Six months!<span style="font-family: "Trebuchet MS", sans-serif;">Believe it or not, it has been a little more than six months since Tim received the incredible gift of a new heart, a second chance at life. Yesterday he went for his six-month heart biopsy. The day went quite smoothly. We made all the regular stops - blood draw, ekg, cath lab. Tim was in a pretty agreeable mood. Not too chatty, but content to play his iPod and watch movies.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">The results of the biopsy came back today. It was not a perfect 0, but pretty close. The result was 1A/1R which indicates minimal rejection. It is not uncommon, and it does not require any additional treatment. The other factors they look at - heart pressures and BNP - were good, so unless something changes, we will not need to see cardiology again until mid-March.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">Next up we do have appointments with both the Renal Department for a check up on Tim's kidneys (they are fine, we just want to keep them that way), and in February a follow up with Neurology. Hopefully we can start to wean Tim off of his anti-seizure medicine then.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">Today was Tim's first day back at school since winter break, and he had a good day. It has taken some time, and patience on his teacher's part, but Tim seems to have found his place in school. He is happy to go, and trying very hard to learn all his letters and start reading. We are very proud of the progress he has made in the last few months.</span><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">It is incredible to think where we were six months ago, and even where we were a year ago. Last year right before Christmas, Tim spent a week in the hospital getting his pacemaker repaired. This year, he was able to celebrate with friends and family, his pacemaker no longer helping him stay alive, but instead sitting in a drawer. As his parents, it is so wonderful to see the transformation. So far, 2013 is shaping up to be a great year for Tim, and the rest of us. We hope it treats you well too!</span>christinehttp://www.blogger.com/profile/08133654020783051014noreply@blogger.com0tag:blogger.com,1999:blog-2725656828010972514.post-43987138922782733392012-11-29T10:18:00.000-08:002012-11-29T10:18:02.888-08:00ThanksgivingFor the first time ever, we traveled for Thanksgiving. We had a trip to Disneyworld planned for last June that we had to postpone after Tim was put on the transplant list. There was no school the week of Thanksgiving, so we took the week and drove to Orlando. <br />
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This year we are especially thankful that Tim is still here, and that his health is greatly improved. He didn't walk all the time at Disney, but he walked more than ever before and had a lot of fun. This was Rosie's first time, and she quite enjoyed a lot of the rides in between throwing herself to the ground as toddlers are wont to do. Lou discovered a new "quest" they have going on there where you must collect cards and visit different areas of the park. All in all, I think each of them had a good time, and we all benefited from a week away from home, work and school.<br />
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Below are a couple of pictures of Tim from our trip:<br />
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Waiting for the Toy Story ride</div>
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On the spinning tea cups</div>
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On "safari"</div>
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With Daisy Duck</div>
christinehttp://www.blogger.com/profile/08133654020783051014noreply@blogger.com1tag:blogger.com,1999:blog-2725656828010972514.post-19785894373638238152012-10-02T14:57:00.002-07:002012-10-02T14:57:55.994-07:00Onward and UpwardIt's been a busy couple of weeks. Last week, September 24th, Tim started kindergarten!! He was very excited and nervous to be joining his class in school after a month of home bound tutoring. He went for a half day the first day and then asked to go all day. So far he's been doing quite well. Like many kindergartners, he is adjusting to the new routine and rules, but he is enjoying it AND he says that PE is his favorite class. This from the boy who would not walk a block this time last year. It is good to see him being a "normal" six year old.<br />
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Today he had a follow up appointment with cardiology. Everything went smoothly and is moving in the right direction - up! He was able to discontinue two more medications, and his echo and EKG looked good. He will have another biopsy at the end of the month. He has lost some weight, but not enough to be concerned about - it is probably due to his higher activity level and growing. The doctor's prescription - a bowl of ice cream every night!<br />
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The hospital also asked Tim if he was interested in being a featured story in their Superior Street windows. They are telling the stories of some of their "firsts." Tim was the first heart transplant, and he decided to bring his hedgehogs to be part of his story. His family of hedgehogs has been growing and they have been with him through many of his hospitalizations. Today while we were there they took some pictures and work will begin on the window soon. It should be up around the beginning of November. Here's a preview of his little friends - Hedgie, Reggie, baby Reggie, and Veggie.<br />
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christinehttp://www.blogger.com/profile/08133654020783051014noreply@blogger.com0tag:blogger.com,1999:blog-2725656828010972514.post-30073985188217018682012-09-05T15:52:00.001-07:002012-09-05T16:06:12.116-07:00Now I am six....A long overdue update will follow, but today's big news is that Tim turns six years old today!! What a journey it's been. Since he is still under quarantine orders, there will be no party for Tim just yet. Instead we spent the day checking in with neurosurgery and having lunch with dad at his office. We're hoping this year will be calm, and just filled with normal six year-old milestones - learning to read, riding a two wheeler, etc.<br />
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As for that update -<br />
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Medically, Tim is doing very well. His last biopsy (8/29), showed no signs of rejection. Neurologically, he has been fine as well. The EEG he had last month showed the part of his brain that had the bleed was still "slow." The doctor explained it is still healing, so he will stay on anti-convulsants for a few more months just to protect his brain. We've been backing off on one of his blood pressure medications and he is doing well. He's done with prednisone, and two other medicines that went with it. He still takes a lot of medicine for a kindergartner, but it's manageable.<br />
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School started last week for Lou, and all the other kids in town. We've been very lucky that Tim was assigned the same kindergarten teacher that Lou had, AND she agreed to be his home bound tutor every afternoon. She has been trying to keep him in the classroom loop, and I think it will make his transition easier. On that note, Tim has been cleared to go back to school as soon as his official 90 days are up! He will be starting the week of September 24th, and while he might not agree, we think it will be good for him to be "normal" and get back into a routine with his peers, not to mention to exercise that brain of his!<br />
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We'd like to send out a HUGE thank you to everyone who has helped our family - be it with meals, childcare, emotional support, lemonade stands, garage sales, and donations of all kinds. It has indeed been a very challenging summer for us all, but I really feel like we are on the upswing. I'm not quite sure how our family would have survived this summer without the help of our friends, family and community. THANK YOU, THANK YOU to you all. Also, a tremendous thank you to the anonymous family that selflessly gave Tim the gift of life. We will never be able to repay them, but we will try our best to pay it forward.<br />
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christinehttp://www.blogger.com/profile/08133654020783051014noreply@blogger.com0tag:blogger.com,1999:blog-2725656828010972514.post-10504995792121507662012-07-31T14:57:00.000-07:002012-07-31T14:57:03.717-07:00E-N-E-R-G-YWe seem to be a little out of date here on Tim's blog, so here's a quick recap:<br />
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After an uneventful biopsy last Wednesday, we all got some very good news - the biopsy showed a minimal amount of rejection, the doctors assured us that it is quite typical following transplant, but nothing to worry about. So, on Thursday, Tim (and the rest of us) were given the go ahead to leave Ronald McDonald and head home! It was a major relief to each and every member of our household.<br />
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In the few days we've been home, Tim's attitude and energy have improved daily. He is still typically Tim, telling me that he "doesn't do chores," and trying to convince us that he is incapable of doing simple things like filling up his own water cup. Today though, he insisted that he run the two blocks to his grandma's house and is playing outside with his brother for the second time today. It is fabulous to see him with so much energy. The challenge now will be keeping him close to home for the next two months!<br />
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Tomorrow, Wednesday, we have another cardiology follow up downtown - blood work, EKG, echo. With any luck, our update afterwards will be full of boring news!christinehttp://www.blogger.com/profile/08133654020783051014noreply@blogger.com0tag:blogger.com,1999:blog-2725656828010972514.post-28190519270360988212012-07-16T19:25:00.002-07:002012-07-16T19:25:45.330-07:00Free At Last!It's been a busy day full of surprises today. We started the day with a check from the neurologists who started asking about when Tim was going to be discharged. We told them that we were not going to talk about discharge until we were being discharged. Who knew that we would be having that conversation so soon afterwards? Yes, today was the day Tim was released from the hospital so he could start his time at Ronald McDonald House.<br />
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To back up a little bit, the morning was a little different than many we've had of late. Dad went off to work as he has since last week, but mom was back home on Lombard to deal with getting a replacement window for our van after someone broke into it over the weekend to steal the GPS. So Tim had cousin Allison, who is visiting from California for the week, sitting with him when the doctors and nurses started coming in talking about discharging him in earnest. After getting confirmation from Tim's nurse that yes, in fact, he was being discharged mom and dad got back to the hospital to start packing up everything we had in the room. After a couple more hours used to remove Tim's central line, get a final x-ray and complete all the discharge paperwork we were off.<br />
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After checking Tim in at Ronald McDonald House we also moved to a larger room to better accommodate the whole family. After getting everything from the hospital and our old room moved into the new room Tim enjoyed his first meal outside of the hospital since May. RMH was serving a dinner tonight that included beef tips with mushrooms, BBQ chicken, chicken fingers and mac and cheese. Tim was in heaven, even if his eyes were a little bigger than his stomach. While he didn't eat a lot, he did have a late lunch and more than anything Tim seemed to be looking forward to a night of sleep that didn't include getting checked for vitals every four hours. <br />
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We have plenty of follow-up appointments scheduled over the next few weeks with the cardiology team, including another biopsy next week, as well as with the neurologists and neurosurgeons. Still, all of that looks like it will be easy especially since the whole family can now sleep under one roof which can only make life that much easier.Thanks!http://www.blogger.com/profile/16340801247580694500noreply@blogger.com0tag:blogger.com,1999:blog-2725656828010972514.post-91304751619408187462012-07-11T05:31:00.000-07:002012-07-11T05:31:12.962-07:00Art Auction Update<br />
As a reminder, some of the auctions being hosted at <a href="http://studiohangouts.com/ArtForTimsHeart/?page_id=100#" target="_blank">http://studiohangouts.com/ArtForTimsHeart/?page_id=100# </a> will be closing up in 5 days, with the rest finishing in 7. There are still a few pieces that do not have any bids and many that are still at just $25 for an original piece of art. If you haven't already, be sure to stop over and check things out and bid if anything strikes your fancy, and be sure to share the link with anyone that you think would be interested.<br />
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<span style="background-color: white;">In other news, Tim's neurological blips seem to be tied to his blood pressure. He has been put on medicine to try and keep his pressure lower and the result has been wonderful to see. His headaches seem to have passed and his confusion and vision issues also seem to have passed. Now if we can just keep it all under control for a good long while. The passing of the headaches also allowed Tim to have the best night of sleep he's had since he was admitted way back on May 30th. He slept through the night only waking up once. Again, more nights like that and Tim should be feeling great.</span><br />Thanks!http://www.blogger.com/profile/16340801247580694500noreply@blogger.com1tag:blogger.com,1999:blog-2725656828010972514.post-45335854645754586002012-07-09T08:54:00.001-07:002012-07-09T08:54:48.160-07:00One Step At A TimeWe again apologize for the delays in getting posts up, but with the family living at Ronald McDonald House and all that seems to happen in a day at the hospital it is sometimes hard to keep up. We do post shorter updates more frequently on Facebook (<a href="http://facebook.com/friendsoftim">http://facebook.com/friendsoftim</a>) so feel free to Like that page to get those added to your newsfeed or if you aren't a Facebook person the page is still public so you can stop by and see the updates too.<br />
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As for Tim, he was extubated on Friday at about 12:30 in the afternoon. Perhaps because of the elephant sized doses of sedatives he'd been taking he was pretty pleasant afterwards which is a little unusual for him. He was able to easily adjust back to drinking and eating within a few hours, even having some chicken and baked potato for dinner that night.<br />
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Over the weekend we spent time trying to get Tim stronger by doing some breathing exercises, going for short walks and sitting in one of the chairs in the room. We also spent some time playing video games and watching movies too. On Sunday Tim had a follow-up MRI which was a different experience for him since he'd never been able to have one prior to his transplant and the one done earlier in the week was while he was fully sedated. It was a little loud, but Tim was a brave guy and did well keeping still during the scan. He also thought it was cool that some of the branding on the machine had his name on it too so we decided that the machine was his and we were just letting the hospital use it.<br />
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The results of the MRI turned out to be positive in that there was nothing unexpected on it. The feedback we've received from the neurology and neurosurgery teams is that Tim looks good and while they will want some follow-up scans done in the future they are pretty satisfied with where he's at.<br />
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Now the cardiology team is being a bit more conservative with Tim since they don't want to have a repeat of what happened last week. While we had been hoping to have Tim released to the Ronald McDonald House early this week the news today is that the doctors now want to keep Tim until after his second biopsy, which is scheduled for this Friday. That means the soonest he could be released is Saturday. Not exactly the news we were hoping to hear. We will see how the week goes though. <br />
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Tim is definitely getting close to the end of his patience about being in the hospital and if we see any serious turn in his attitude we may push the issue more. Considering he's been in the hospital for six weeks already we are very proud of how well he's tolerated it all, but we've also started to hear him say that he's missing mom or dad when they aren't there more than before and we've also heard him say he just wants to go home too. We've seen Tim get really down after surgery before, most notably after his double switch 2 years ago, so we want to do everything we can to avoid that again. The difference this time around is that it appears that physically he's generally feeling much better which we hope will help buoy his spirits.<br />
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Otherwise this week is one of some changes. Dad is back at work so mom is back to spending her days at the hospital. This week Lou is staying with his grandma Jean so he can go to camp, while Rosie is staying with mom and is having helpers come to help occupy her during the day. Dad will still be sleeping at the hospital until Tim is discharged. In many ways we're getting back to life as it was before the transplant while we were waiting for a heart, only with some of the family living at the Ronald McDonald House instead of at home.Thanks!http://www.blogger.com/profile/16340801247580694500noreply@blogger.com0tag:blogger.com,1999:blog-2725656828010972514.post-34321070797424413542012-07-05T10:46:00.001-07:002012-07-05T10:46:08.712-07:00Slow & Steady....<br />
And we thought things moved slowly with cardiology from time to time....<br />
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So, all things considered, Tim is improving as much as he can. He tolerated the lower versed dosage from yesterday well and all outward neurological signs are that everything is still working well. The neurology team lowered his dosage from 600 to 500 and we are currently awaiting the EEG to be hooked up again to monitor for any seizure activity. Provided that Tim continues to be without any seizures they can lower his versed dosage by about 100 every 8 hours. That puts us at least 40 hours away from being completely free of the sedative. The medication can also help inhibit the seizures which is why they are decreasing the dosage so slowly.<br />
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Perhaps most significantly, Tim should be back off the ventilator this afternoon. While it certainly isn't the end of the line, it is a big step towards getting him all the way back. We're all looking forward to the strained demands for "Water" ever few minutes when that happens.<br />
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Otherwise, we do know that a scan of some kind will be done to see what Tim's brain looks like and Tim's next biopsy for his heart will be next Friday. Our best guess is that provided everything goes well Tim's little event will have delayed his discharge by about a week, with him getting released the first half of next week.<br />Thanks!http://www.blogger.com/profile/16340801247580694500noreply@blogger.com0tag:blogger.com,1999:blog-2725656828010972514.post-85536555041015561132012-07-04T06:52:00.002-07:002012-07-04T06:52:35.359-07:00Waking Up<br />
This morning brings lots of good news. The MRI came back negative, meaning there is no evidence of long term damage but also not showing any reason for what happened. The official CT scan read did show that there was no change with the small bleed, but no change is definitely better than it getting worse. The EEG also showed no seizure activity while Tim was heavily sedated.<br />
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With all of that information they have decided to start backing off on Tim's sedation in order to see if any seizure activity picks up as he is less sedated. As a result he is now more awake, opening his eyes, following commands, answering questions and trying to talk over his vent. Neurology was going to extubate him tomorrow, but the cardiology team, knowing Tim as they do, think that he won't wait that long and may push to get him off the vent sooner so he doesn't hurt himself trying to pull the tube himself.<br />
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We still have a ways to go, but these are all important improvements. The other big plus is that isolation officially ended this morning so we can be with Tim without having to get all gowned up with gloves and masks. Tim is still going to be very sensitive to what's around him, so any hint of illness will preclude someone from being around him but this is also a big step for us.<br />Thanks!http://www.blogger.com/profile/16340801247580694500noreply@blogger.com0tag:blogger.com,1999:blog-2725656828010972514.post-58691565416165645902012-07-03T09:07:00.001-07:002012-07-03T09:07:37.708-07:00Keeping A Level Head<span style="color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px; text-align: left;">So, while we don't have any definitive answers here is what we do know at this point. Last night's CT scan showed that there was a small bleed on Tim's brain which caused some swelling. This, along with the other symptoms that were seen yesterday resulted in Tim being put on some anti-seizure medications and an EEG overnight. The EEG did show signs of some seizures, but none that resulted in an</span><span class="text_exposed_show" style="color: #333333; display: inline; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px; text-align: left;">y outward signs.<br /><br />A follow-up CT was done this morning which on initial review looked like the amount of blood and swelling had decreased, but a more thorough read by a radiologist needs to be completed to confirm this. Tim is going to be hooked back up to the EEG to get some additional feedback about any seizures, if there are any. There is also an MRI scheduled for later this afternoon to get some more detailed pictures for the neurology team to work with.<br /><br />The feedback we've gotten is that Tim's heart continues to be in great shape. As for the neurological side of things the current assumption is that the bleeding on his brain caused the seizures that we saw yesterday (blank stares, unable to respond to questions or directions). This is all treatable with medications and currently does not require any surgery. After last night's CT Tim was able to nod and shake his head to yes and no questions and so there isn't a lot of worry that his brain isn't working. The real concern is trying to stop whatever caused the issue so that no lasting damage can happen.<br /><br />While all of this is obviously very scary for the family to have to deal with, especially since it was so unexpected for everyone, we are thankful that it happened when it did. We can only imagine what could have been if this all happened a day or two after being discharged and we were at Ronald McDonald House. Even though it is close by there's something about having the entire hospital and it's resources right there as something goes wrong. All the medical staff we've spoken to this morning has been very optimistic about the long term outcome while they are taking a very cautious approach in the short term to keep Tim as stable as possible.</span>Thanks!http://www.blogger.com/profile/16340801247580694500noreply@blogger.com0tag:blogger.com,1999:blog-2725656828010972514.post-27077941293819061032012-07-02T18:44:00.001-07:002012-07-02T18:44:15.872-07:00A (Hopefully) Small Setback<br />
So much for a quiet night. At about 6 this evening Tim had an event where his oxygen saturation dropped quickly and he stopped talking or responding to anyone asking him questions or giving him directions. Thankfully dad and Tim's nurse were right on top of things and quickly there was a room full of doctors and nurses tending to Tim to try and keep him breathing and to see what was going on with him.<br />
<br />
For now they are trying to figure out if he was having a seizure or a brain bleed or something else that caused this. On the plus side the doctors were quite sure it had nothing to do with his heart, the transplant or the cath from earlier today. Tim is back on the vent to keep him breathing right and they have already done a CT scan and plan to monitor his brain activity overnight to see if there is any evidence of additional seizures. Also on the plus side is that he is now able to respond appropriately to yes and no questions.<br />
<br />
We're hoping this is just a minor bump in the road, especially since it is such a surprise to not just us but all of Tim's medical team.<br />Thanks!http://www.blogger.com/profile/16340801247580694500noreply@blogger.com0tag:blogger.com,1999:blog-2725656828010972514.post-9615083988776425912012-07-01T11:41:00.003-07:002012-07-01T11:41:46.349-07:00Art For Tim's HeartOur good friend Ryan Flynn has organized an art auction to help raise funds for Tim. Several artists from across the country, including one of Tim's grandpas, contributed art with opening bids ranging from $25 - $150. Link over to <a href="http://studiohangouts.com/ArtForTimsHeart/" rel="nofollow nofollow" style="color: #3b5998; cursor: pointer; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px; text-align: left; text-decoration: none;" target="_blank">http://studiohangouts.com/ArtForTimsHeart/</a> to check out the auction, find out more about the artists and place a bid if any of the pieces speak to you. Be sure to pass on the link to anyone who might be interested in helping Tim or is an art enthusiast that may want to add a new piece to their collection.Thanks!http://www.blogger.com/profile/16340801247580694500noreply@blogger.com0tag:blogger.com,1999:blog-2725656828010972514.post-80001572481877769352012-06-25T08:08:00.001-07:002012-06-25T08:08:46.163-07:00Transplant RecoveryWe're sorry for not posting in the last few days, but it's been pretty busy both at the hospital and on the home front. We have been posting short updates and photos more frequently on Tim's Facebook page (<a href="http://facebook.com/friendsoftim">http://facebook.com/friendsoftim</a>) so feel free to pop over there. You don't even need to be a member to check out the page, although having an account allows you to leave comments and messages.<br />
<br />
In the last several days Tim has progressed well from his transplant surgery. He was off the ventilator on Friday and spent the weekend getting stronger, going from a liquid diet to solids quickly. He's had 2 of his 3 chest tubes already removed, with the third scheduled to be removed today. He gradually went from about a dozen drip medications down to just one at this point. He is scheduled to have his arterial and PICC lines removed today leaving just a central line left to both draw blood from and to administer any IV medications that are necessary from here on out. All in all, the doctors are very happy with where things are at.<br />
<br />
As for Tim, he's still quite sore from the surgery as would be expected. He's gone from an on-demand pump narcotic pain drug to Tylenol every few hours to manage his pain. He's decided he doesn't want to talk much with the doctors and nurses but is pretty communicative with mom and dad still. He was excited to get out of bed and into a chair yesterday and was quite content to stay in the chair for as long as he could. His appetite comes and goes, but he was like that even before surgery, often having eyes much bigger than his stomach at meals. There are some meals that he just picks at and others where we are surprised by just how much he does eat. He's shown some interest in playing with some Lego kits we have in the room, but with all the lines in it has been hard for him to really use his arms and hands. Hopefully after he gets those lines out he will be better able to do things with his hands. We've got a big Avengers Lego kit he was excited about assembling before surgery, so hopefully that will be motivation enough to get him moving.<br />
<br />
Looking ahead, it seems as if very soon Tim will return to being just a kid who happens to be living in the hospital. We do need to wait for the two week isolation period to come to an end before any discussions about discharge can begin, but we have been told he can likely take walks around the floor in the next day or two provided he wears a mask and gloves. Mom and dad have their work cut out for them as they have to take a nursing crash course to not just learn about Tim's new drug regiment but also how to do things like take accurate blood pressures and other things to help keep Tim's new heart as healthy as can be. We will have to even pass tests and spend a 24 hour period being the only ones providing Tim's care under the watchful eye of a nurse to make sure we've got everything down pat.Thanks!http://www.blogger.com/profile/16340801247580694500noreply@blogger.com1tag:blogger.com,1999:blog-2725656828010972514.post-53968914143860517372012-06-21T06:29:00.000-07:002012-06-21T06:29:06.548-07:00Transplant Day Recap<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">While Tim’s recovery slows down a little we wanted to go
back and talk a little more about his transplant day since we only really spoke
about knowing that the surgery was going to happen and then that it happened.<span style="mso-spacerun: yes;"> </span>This is going to be a long post with as much
detail as we can remember so we understand if anyone doesn’t want to read
through it all.</span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">The story actually starts the night before we found out
about the transplant happening.<span style="mso-spacerun: yes;"> </span>Tim,
throughout the entire hospitalization, had been great about it.<span style="mso-spacerun: yes;"> </span>He hadn’t complained about being there, didn’t
really ask about going home, dealt with the playroom drama very well and did
what we all had to do and just kept calm and let things happen as they needed
to, or in the words of one of his dad’s favorite websites he kept calm and
chived on.<span style="mso-spacerun: yes;"> </span>However, the night before the
transplant news Tim showed some rare vulnerability.<span style="mso-spacerun: yes;"> </span>He was asking about what it would mean to be
in isolation after the transplant.<span style="mso-spacerun: yes;"> </span>He
was sad that he wouldn’t be able to spend time with his brother Lou.<span style="mso-spacerun: yes;"> </span>He was angry about his mom and dad having to
wear special clothes just to see him.<span style="mso-spacerun: yes;"> </span>He
was worried about what it would mean to get his new heart.<span style="mso-spacerun: yes;"> </span>He cried, he got angry and yelled a little
bit, he asked to be cuddled.<span style="mso-spacerun: yes;"> </span>Dad happily
climbed into bed with Tim and held him tight, trying to find the right words to
help calm Tim’s nerves while also trying to stay strong for Tim.<span style="mso-spacerun: yes;"> </span>Tim also asked to talk to his mom, so we
called her at home and he chatted with her and Lou a bit too.<span style="mso-spacerun: yes;"> </span>Tim’s nurse, one he’d not had before, also heard
Tim crying and came in to talk with him to try and answer any questions Tim
might have had.<span style="mso-spacerun: yes;"> </span>It took some doing, but
between everyone Tim’s concerns were eventually eased enough for him to fall
asleep.</span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">That night both Tim and dad slept well, which had been a
rare occurrence overall.<span style="mso-spacerun: yes;"> </span>There have been
more than a few nights where Tim has slept fairly well, but dad had struggled
with getting enough sleep despite the better efforts of most of the nursing
staff to keep things quiet.<span style="mso-spacerun: yes;"> </span>One major
contributing factor was that Tim’s nightly diuretic had been stopped in the
last few days which meant that he wasn’t waking up every night several times needing
to use the bathroom.<span style="mso-spacerun: yes;"> </span>It also helped that
Tim had been about as stable as could be hoped for and so there was very little
need to disturb him during the night.</span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">The next morning started as every other had during this
hospitalization.<span style="mso-spacerun: yes;"> </span>Dad’s alarm sounded at
6AM and he started his process of getting ready to go to work.<span style="mso-spacerun: yes;"> </span>It was after getting out of the shower and
looking to get Tim started on his day by trying to decide what to order Tim for
breakfast and lunch that we were visited by Dr. McBride (Doctor Mary to our
family).<span style="mso-spacerun: yes;"> </span>It wasn’t unusual to see any of
Tim’s doctors at this hour, and they all seemed to drop in at odd times pretty
much all the time anyway.<span style="mso-spacerun: yes;"> </span>Dr. Mary had become
a family favorite among the staff during the last few weeks; her sarcastic
humor and straight forward approach couldn’t help but make that happen.<span style="mso-spacerun: yes;"> </span></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Starting our day with a visit from Dr. Mary meant the day
was going to start off well pretty much no matter what.<span style="mso-spacerun: yes;"> </span>She and Tim had been exchanging jokes
throughout his stay and we could all tell that she felt a special connection to
Tim.<span style="mso-spacerun: yes;"> </span>In reality, Tim seems to have
become a favorite among the staff at the hospital in general.<span style="mso-spacerun: yes;"> </span>It may be because of him being a pretty unique
case in part, but we have also seen Tim’s unique view on life endear him to a
lot of doctors and nurses.<span style="mso-spacerun: yes;"> </span>Whether it
was Tim talking about his favorite movies and shows, or about his unique for a
5 year old diet that includes favorites like mushrooms, scallops and sushi, or
his caustic wit for some reason the doctors and nurses seem to love him even
though some of that same behavior sometimes makes it difficult for mom and dad
to like him all the time.</span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">To further prove this point, Dr. Mary started off by telling
dad that she insisted that she be the one that got to tell us the good news
which is when she then told us that they had found a heart for Tim.<span style="mso-spacerun: yes;"> </span>Needless to say this brought on a whirlwind
of emotions – happiness, excitement, and a little bit of fear.<span style="mso-spacerun: yes;"> </span>A few tears welled up in dad’s eyes and for
once it was hard for him to come up with something to say other than thank
you.<span style="mso-spacerun: yes;"> </span>This of course was the best news we
could possibly have gotten.<span style="mso-spacerun: yes;"> </span>While we had
settled into a routine at the hospital over the last several weeks and were
prepared to continue on with that routine as long as was necessary it was so
wonderful to know that there was now an end in sight and that Tim would have
the best possible chance at a long and happy life now.<span style="mso-spacerun: yes;"> </span>Of course all of this happened while Tim was still
sleeping since it was still barely 6:30 in the morning.</span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">After Dr. Mary left dad called mom at home to share the
exciting news and to try and plan on what to do for the day.<span style="mso-spacerun: yes;"> </span>Our cousin Leslie was scheduled to sit with
Tim that morning while dad was at work, so mom contacted her to let her know
she didn’t need to come to the hospital.<span style="mso-spacerun: yes;">
</span>We contacted all of Tim’s grandparents to let them know the exciting
news too before we broadcast it to all of our wonderful friends.<span style="mso-spacerun: yes;"> </span>Soon afterwards, when Tim started to wake up,
dad got to tell Tim the exciting news too.<span style="mso-spacerun: yes;">
</span>This brought back some of the anxiety of the night before again, but
after agreeing to watch some Power Rangers episodes with him Tim settled down
pretty well.<span style="mso-spacerun: yes;"> </span>Then the wait began.</span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">As with any surgery the wait meant that Tim would not be
able to eat or drink.<span style="mso-spacerun: yes;"> </span>Ever since Tim’s very
first procedure we have had an often unspoken agreement that mom and dad don’t
eat or drink while Tim can’t eat or drink.<span style="mso-spacerun: yes;">
</span>We firmly believe that we have no business expecting Tim to do something
we’re not willing to do ourselves and that we can’t expect Tim to be stronger
than we can be.<span style="mso-spacerun: yes;"> </span>Many times this policy
is easy to abide by, and initially this transplant day sounded like it was
going to be one of those easier days.<span style="mso-spacerun: yes;">
</span>Initial word was that the transplant would likely start in the early
afternoon, but as all things that take place at the hospital that was subject
to change.<span style="mso-spacerun: yes;"> </span></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">As we’d been told, with a transplant there is a complex
ballet of things that have to happen in concert in order to ensure a successful
surgery.<span style="mso-spacerun: yes;"> </span>On Tim’s end it meant drawing
lots of blood as with any of his surgeries to ensure proper typing for any
necessary blood transfusions, confirm there were no infections and so on.<span style="mso-spacerun: yes;"> </span>We are sure they also needed to double and triple
check to confirm that the donor heart was a good match for Tim.<span style="mso-spacerun: yes;"> </span>In addition to this operating room time
needed to be scheduled, the surgeon’s schedule needed to be coordinated with
and doctors from Children’s needed to go out to visually inspect the donor
heart to confirm they thought it was a viable heart for Tim.<span style="mso-spacerun: yes;"> </span>At the same time, on the donor’s side a
similar complex set of steps needed to take place including things like
securing an operating room and scheduling a surgeon to harvest not just Tim’s
new heart but any other organs that were being donated.<span style="mso-spacerun: yes;"> </span></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">On the subject of the donor, we have spent a lot of time
talking about our happiness and excitement about Tim’s new heart.<span style="mso-spacerun: yes;"> </span>This never would have been possible unless
another family was experiencing something on the polar opposite end of the
emotional spectrum in losing their child.<span style="mso-spacerun: yes;">
</span>The selfless strength and courage of that family to give the gift of
life not just to Tim but to several other children and their families is
inspiring.<span style="mso-spacerun: yes;"> </span>Our only hope is that we, as
a family, can live up to that level of courage every day and embrace the life
they’ve given our son with all we have.<span style="mso-spacerun: yes;"> </span>We’ve
discussed it as a family and all agree that if ever put into the same position
we would make the same kind of choice, but we also recognize that for some
families that choice is an agonizing one to make.<span style="mso-spacerun: yes;"> </span>We can never thank this family enough, yet we
may never know them.<span style="mso-spacerun: yes;"> </span>Be design, the
donor program is an anonymous one.<span style="mso-spacerun: yes;"> </span>In
the next several weeks we will be given the opportunity to send a letter to the
donor family to thank them for what they’ve done, which we plan to take full
advantage of.<span style="mso-spacerun: yes;"> </span>From there it is entirely
up to the donor family if they want to let us know who they are or not and if
we get to meet them or not.</span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">So, as we sat and waited for all of the preparation for the
transplant surgery to take place we did what we could to keep Tim entertained
and distracted.<span style="mso-spacerun: yes;"> </span>Mom arranged for Lou and
Rosie to stay with our friends the Petiprin’s for the morning and then they
would stay with their Grandma Jean for the rest of the day.<span style="mso-spacerun: yes;"> </span>That allowed mom to get to the hospital around
10:00 to help pass the time.<span style="mso-spacerun: yes;"> </span>Tim had
lots of visitors from the hospital throughout the day.<span style="mso-spacerun: yes;"> </span>Emily, the wonderful child life specialist
came by with an iPad with lots of kid friendly apps, including what instantly
became Tim’s favorite: a virtual whoopee cushion.<span style="mso-spacerun: yes;"> </span>She, and the transplant social worker Pilar
spent a lot of time talking and playing with Tim throughout the day.<span style="mso-spacerun: yes;"> </span>Our old friend Dr. Kindel took one last
teaching opportunity to have a couple of the other cardiologists listen to Tim’s
old heart one last time since the next time they saw him, from a cardiology
standpoint, Tim was going to be a whole lot less interesting to listen to.<span style="mso-spacerun: yes;"> </span>This was especially fun to watch since Dr.
Kindel had Dr. Ben and Dr. Lindsay making sound effects to describe what they
were listening to – it was all more than a little surreal.<span style="mso-spacerun: yes;"> </span>In hindsight one of our only regrets is that
we didn’t take a similar opportunity to listen to Tim’s old heart one last time
too.</span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">In between all the hospital folks stopping by to see Tim he also
took plenty of time to just be a kid too.<span style="mso-spacerun: yes;">
</span>He played basketball and Lego games on the Xbox with dad, and watched a
number of movies and TV shows to pass the time.<span style="mso-spacerun: yes;">
</span>Tim also got to visit some with his grandparents that had come to the
hospital to wait for the surgery.<span style="mso-spacerun: yes;"> </span>Eventually
it became obvious that the early afternoon estimate for the start of surgery
was not going to happen, mostly because at some point we looked up and it was
3:00 in the afternoon.<span style="mso-spacerun: yes;"> </span>This was also
when Tim started to realize he was getting hungry.<span style="mso-spacerun: yes;"> </span></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">This was when plan B was put into action with dad running
out to get Tim a new Avengers Lego set to put together.<span style="mso-spacerun: yes;"> </span>By the time dad got back to Tim’s room Emily
from child life had also stopped by with some Legos sets for Tim to pick from
too.<span style="mso-spacerun: yes;"> </span>Tim chose a Toy Story set and he
and dad started putting that one together first.<span style="mso-spacerun: yes;"> </span>While a good distraction, eventually Tim
started getting grouchier from not eating and so some other alternatives needed
to be put into play.<span style="mso-spacerun: yes;"> </span></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Dad had just the thing on his iPad sitting in reserve – one of
the Family Guy Star Wars specials.<span style="mso-spacerun: yes;"> </span>Now,
please keep in mind we generally don’t let the kids watch these shows, but they
have seen them before by being a little sneaky with the DVR or the DVDs.<span style="mso-spacerun: yes;"> </span>The raunchy humor and bad language seems to
go entirely over their heads and they are just focused on the fact that they
are watching a funny version of Star Wars.<span style="mso-spacerun: yes;">
</span>The show definitely kept Tim distracted for the entirety and it gave Tim
a bit of humor he held onto for the rest of the day that also allowed for lots
of laughs in his room for everyone.<span style="mso-spacerun: yes;"> </span>The
name Carlos Spicyweiner will be one we won’t forget for a long, long time now.</span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">As the day wore on and people started to linger in Tim’s
room a bit too long we did have to start asking folks to step away to give Tim
his space if we expected him to remain in good spirits.<span style="mso-spacerun: yes;"> </span>It, unfortunately, meant that we had to ask
grandparents to leave the room on a couple of occasions. <span style="mso-spacerun: yes;"> </span>At about 7:00 we got a visit from Dr. Backer,
Tim’s surgeon, telling us they were getting close to being able to get started
and checking to answer any questions we had.<span style="mso-spacerun: yes;">
</span>He then left to prepare for the surgery.<span style="mso-spacerun: yes;">
</span>Finally, at about 8:00, the anesthesiologists arrived to get Tim ready
for surgery.<span style="mso-spacerun: yes;"> </span>We got some hugs in,
whispered some encouraging words in Tim’s ear and the doctors gave Tim a
pre-sedative to calm him down since he’d started to get very anxious about the
surgery again.<span style="mso-spacerun: yes;"> </span>As the drug kicked in he
went from tears to giggles and before we knew it he was being wheeled out of
the room and off to the operating room.<span style="mso-spacerun: yes;"> </span>At
this point mom and dad took the opportunity to go and finally have something to
eat.</span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">On our way back to Tim’s room we got a call from his nurse
telling us that we needed to clear out all the stuff we’d moved in.<span style="mso-spacerun: yes;"> </span>This was a surprise and a minor point of
frustration for us as we’d talked to just about everyone we saw from the
hospital during the day about what would happen with all Tim’s stuff and had
been told by everyone that other than stuffed animals and blankets that we
would be able to leave it all in the room.<span style="mso-spacerun: yes;">
</span>For us, it was less about having to move the stuff than the fact that we’d
just told all the grandparents to head home since surgery wasn’t going to be
over until early morning and we could have spent the entire day clearing stuff
out.<span style="mso-spacerun: yes;"> </span>We really didn’t care either way
what was going to need to happen with the stuff, we just were a little
concerned and frustrated about the mixed message.<span style="mso-spacerun: yes;"> </span></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">One thing we have to continually remind ourselves of is that
while this isn’t the first transplant this team has dealt with, it is the first
one they’ve handled at the new building.<span style="mso-spacerun: yes;">
</span>With the new building it gives them the opportunity to do things
differently for the better and in many cases they haven’t had a chance to work
through every detail yet.<span style="mso-spacerun: yes;"> </span>So, some
members of the staff are relying on policies that were in place for the old
hospital, others may be working from new policies that may have already been
abandoned and in some instances there just may not have been a policy in place
yet and everyone is just trying to do their best to come up with a safe and
reasonable answer.<span style="mso-spacerun: yes;"> </span></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Another area of frustration came up shortly after this as we
were trying to decide how best to wait for the surgery to be completed.<span style="mso-spacerun: yes;"> </span>Mom had been planning to head home to get Lou
and Rosie and get them to bed at home, but then the options that seemed to be
in place during the day for dad to stay started to dry up.<span style="mso-spacerun: yes;"> </span>At one point we had been told that we could
wait for Tim in his room but they now wanted to clean it down so it would be
100% clean for him after surgery – which made sense and was totally
reasonable.<span style="mso-spacerun: yes;"> </span>So, we asked about staying
in one of the new parent sleep rooms in the family life center.<span style="mso-spacerun: yes;"> </span>As it turned out all of them had been taken
and were also booked for the rest of the week.<span style="mso-spacerun: yes;">
</span>This also created some frustration as those rooms were only supposed to
be checked out for 24 hours at a time so that parents of newly arriving very sick
kids could potentially have access to them.<span style="mso-spacerun: yes;">
</span>Now, not having one available when requested at 9:00 at night seemed
reasonable and not that surprising but the idea that they wouldn’t free up for over
a week seemed a little outside the boundary of reasonable. </span></div>
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<span style="font-family: Calibri;">At this point, without a bed for dad to sleep in at the
hospital while Tim was in surgery overnight, we made the decision that it would
be best for us all to just head home for the night.<span style="mso-spacerun: yes;"> </span>Living just 20 miles away we don’t feel that
far away, and if we needed to head back in the middle of the night we could
make the trip in less than 30 minutes.<span style="mso-spacerun: yes;">
</span>We also have always taken the approach that there is nothing we can
actually do at the hospital other than sit there and wait, which can be done
anywhere.<span style="mso-spacerun: yes;"> </span>It’s not like we can assist
with the surgery.<span style="mso-spacerun: yes;"> </span>Yes, under ideal
circumstances we like to be close by, but in this situation it just didn’t make
any sense to do so.</span></div>
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<span style="font-family: Calibri;">We got a call from the OR at about 10 letting us know that
Tim was fully ready for transplant to begin and that they had already opened
his sternum and were awaiting the delivery of the heart.<span style="mso-spacerun: yes;"> </span>We then told the nurse we were speaking with
that unless something went wrong we just wanted to be updated when surgery was
complete.<span style="mso-spacerun: yes;"> </span>After getting some fitful
sleep we got the call from Dr. Backer at about 3:30 in the morning that
everything went well and Tim was heading back up to his room to start recovery.<span style="mso-spacerun: yes;"> </span>This was exactly the news we had hoped to hear
and the stress that had been accumulating since Tim was listed for transplant
back in March seemed to evaporate immediately.<span style="mso-spacerun: yes;"> </span>We decided to try and get a few more hours
sleep before trying to go back to see Tim since we didn’t have anyone available
to watch Lou and Rosie for several more hours and with Tim on the ventilator
again we have a much lower sense of urgency knowing that if he really needed us
there the nurses would contact us.<span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-family: Calibri;">That gets us up to date, Tim’s recovery so far has been
going well.<span style="mso-spacerun: yes;"> </span>He hasn’t surprised the
doctors with anything out of the ordinary yet.<span style="mso-spacerun: yes;">
</span>He will remain on the vent for another day or so and then we be spending
all of our time with him to help him along with his recovery.<span style="mso-spacerun: yes;"> </span>These 2 weeks in isolation won’t b e a lot of
fun for any of us, Tim will definitely be missing his brother and sister and
mom and dad will be spending a lot of time in masks, gowns and latex
gloves.<span style="mso-spacerun: yes;"> </span>For the moment we’ve been told
that if we sleep in the room with Tim we will have to remain in those same
masks, gowns and loves which will make sleeping difficult at best.<span style="mso-spacerun: yes;"> </span>However, all of these comfort sacrifices are
without a doubt worth it knowing that it means that Tim will be as healthy and
happy as possible after the isolation period is over.</span></div>Thanks!http://www.blogger.com/profile/16340801247580694500noreply@blogger.com3tag:blogger.com,1999:blog-2725656828010972514.post-10721047681175251762012-06-20T06:34:00.002-07:002012-06-21T06:39:28.542-07:00Beautiful DayWhat a glorious day to wake up to - sun shining brightly, birds chirping outside and a healthy heart beating in Tim's chest. We are so thankful that we get to enjoy such a wonderful day. Today would not have been possible without the outpouring of support from family, friends, co-workers, hospital staff and all of our new friends we've just not met in person yet. With so many people behind us we couldn't help but stay sane during such an insane time of our lives. We can't believe that nearly 1,000 new people have become Tim's friend in the last 24 hours and also can't wait for Tim to wake up so we can tell him. We're sure his jaw will hit the floor when he hears the news.
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Most importantly we want to thank the donor family for providing the wonderful gift of life during what must be their darkest hour. This generosity will never, EVER, be forgotten. We currently and may never know any details about who the donor was or where they came from, their privacy is protected and only they can decide to contact us. Still, we start this day feeling almost like it is Tim's birthday. With this in mind, we would like to remind everyone who hasn't already to register to be an organ donor too. You can go to Donate Life America to find out how to register. As the old saying goes, you can't take it with you so you may as well give what you've got while you can.
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<br />
Looking ahead, we know the next couple of weeks won't be easy for Tim. Not only is he recovering from surgery but he will also be in isolation. This means Tim won't be able to spend any time with his big brother Lou or little sister Rosie. It also means he won't be able to have many if any visitors other than mom and dad. On the plus side is that for the first time in his life Tim will be recovering with a healthy heart, a detail we have to keep reminding ourselves about. That should make things a little easier for him and, knowing Tim, by the time these 2 weeks pass he'll be ready to run a marathon when he could barely run yards before without getting winded.Thanks!http://www.blogger.com/profile/16340801247580694500noreply@blogger.com0tag:blogger.com,1999:blog-2725656828010972514.post-47240222437413972282012-06-20T01:39:00.002-07:002012-06-20T01:39:20.549-07:00Surgery CompleteWe just received a call from Dr. Backer letting us know everything has gone well as possible, Tim is doing great and he will be heading back to his room soon. We won't be allowed in to see him for another couple of hours as they get him settled back into his room and get some immediate follow-up tests done.christinehttp://www.blogger.com/profile/08133654020783051014noreply@blogger.com1tag:blogger.com,1999:blog-2725656828010972514.post-46005800466965476592012-06-19T20:49:00.002-07:002012-06-19T20:49:39.291-07:00In Surgery NowTim was picked up for anethesia at about 8:00 this evening and surgery was started at about 10. We had to clear out Tim's room (despite assurances throughout the day that we wouldn't need to) of everything that we moved in and then also found out that we didn't really have a place to sleep at the hospital tonight. On the plus side, the procedure likely won't be complete until 4 or 5 in the morning at the best, so we all went home to sleep in the comfort of our own beds knowing that the hospital would call throughout the night with updates. We plan to return to the hospital tomorrow morning once we hear that the surgery is complete and then we start the road to recovery and avoiding rejection.christinehttp://www.blogger.com/profile/08133654020783051014noreply@blogger.com0tag:blogger.com,1999:blog-2725656828010972514.post-6932684122747495612012-06-19T05:37:00.002-07:002012-06-19T05:37:21.911-07:00Today's The Day!We got word a little earlier this morning that they have found a heart match for Tim and so long as everything goes as expected the transplant surgery will be happening early this afternoon. We don't have much more of an update than that for the time being but will try to keep everyone updated as we have new information.Thanks!http://www.blogger.com/profile/16340801247580694500noreply@blogger.com2tag:blogger.com,1999:blog-2725656828010972514.post-43858333112416244772012-06-18T13:47:00.000-07:002012-06-18T13:47:07.997-07:00Parking WarsAs a follow-up to last week's post about the parking at the new hospital, we've started a petition through change.org that we are now actively collecting electronic signatures for. The link is on the right hand side of this site, or you can go to <a href="http://www.change.org/petitions/standard-parking-corporation-stop-charging-so-much-for-validated-parking-at-lurie-children-s-hospital#">http://www.change.org/petitions/standard-parking-corporation-stop-charging-so-much-for-validated-parking-at-lurie-children-s-hospital#</a> to add your name. Be sure to pass on word to anyone else you think would support keeping parking costs down for any parents of sick kids.Thanks!http://www.blogger.com/profile/16340801247580694500noreply@blogger.com0tag:blogger.com,1999:blog-2725656828010972514.post-65495429642163039422012-06-15T08:19:00.000-07:002012-06-15T08:19:11.501-07:00Odds & EndsAs much as it seems like there is little to nothing going on with Tim right now it seems there are still a lot of things that seem to happen every day. Yesterday Tim had our family friend Katie come to visit with him in the morning in anticipation of a family dinner night that meant mom and the rest of the crew wouldn't come in until the afternoon. While Katie was there some techs showed up to change the dressing for Tim's PICC line while he was heartily eating his breakfast. Now, please keep in mind that Tim is very sensitive about anything involving IVs and such both because of the needle/catheter in his arm as well as his sensitivity to adhesives in general. With this in mind, both Tim's nurse and Katie suggested that the dressing change could wait until after Tim was done eating. The techs that were there basically said no and proceeded to do what they needed to do. This set Tim off in such a way that he didn't want to go back to the breakfast he had been enjoying and needed mom to come down to the hospital hours earlier than planned which caused a variety of issues as the day went on like the fact that Rosie was never able to take a nap, Lou went a little stir crazy and everyone just wound up being a little grumpy with each other. <div>
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With all this in mind today we are going to push to establish a better standard of care for Tim with the doctors. It seems to us that at times Tim is little more than a checklist or a spreadsheet to some of the people at the hospital with things they need to do with very little regard to the fact that Tim is a person with opinions, feelings and deserving of respect especially since he's going to be a long term resident who, at least for now, had very little going on with him. We've had enough of these bumps in the road since moving to the new hospital that we are going to have to be more insistent about how they treat Tim, both medically and more generally. We are going being forced to ask that nothing be done to Tim without one of his parents present, that he has an approved list of nurses to take care of him so we can avoid the sleeping issues we written about before and while we've temporarily held back on our fight to get Tim to the playroom we will likely pick back up on that crusade as well. On that subject, what amazes us is that even though Tim has been forbidden to leave the floor and it has been represented to us that no children on the cardiac floor will be allowed to leave it while they are admitted there are a LOT of members of the staff who are unaware of this policy. We've talked to doctors, nurse practitioners, nurses and all sorts of other staff who are all flabbergasted when we tell them about how Tim isn't allowed to go to the playroom. So, while we are definitely going to be fighting that fight for Tim, we are also thinking of the other families that may not know to fight these fights for their kids too.</div>
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<div>
On the subject of fights that are worth fighting for us and everyone else, we also want to organize a letter writing/phone calling campaign regarding the cost of parking at the new hospital. At the old location the hospital owned the parking garage and controlled the costs, so with validation you could park 24 hours for just $5 - not bad for a family in any kind of crisis that resulted in their child being in the hospital. At the new location the Standard Parking Corporation now owns the lot. It does not serve as a parking structure just for the children's hospital as it is a busy and congested part of the city, but with validation parents are now paying $10 for 7 hours of parking or $15 for a full day. That means a family, such as ours, that needs to pay to park every day would be looking at $300-$450 a month just to be able to see their sick child. We're not against the company being able to make a buck from anyone parking in the garage to stay at one of the many luxury hotels in the area, and believe me they do when they can charge $39 a day to park for non-validated customers. What they do need to do is take into account that they are now providing a service to families during their most desperate time, and that service is not covered or defrayed by insurance. With that in mind we would love to get some help with writing letters, sending faxes or calling the Standard Parking corporate headquarters to let them know that the entire community is against making parents of sick kids pay the high parking rates they are charging. We are sure they will try to tell everyone that there are less expensive lots nearby, but that begs the question why should a parent with a sick kid have to seek out less expensive parking further away from the hospital? Here is the contact information for Standard Parking for anyone willing to assist us on this crusade:</div>
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Standard Parking Corporation</div>
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900 North Michigan Avenue</div>
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Suite 1600</div>
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Chicago, IL 60611</div>
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1-888-700-PARK (Main Phone)</div>
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1-312-640-6169 (Main Fax)</div>
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Of course, if anyone wants to also send letters to the newspapers, alderman, or anyone else you think would be worth writing to feel free.</div>
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On a cheerier note, one of the many Friends of Tim from Tim's Facebook page (<a href="https://www.facebook.com/FriendsOfTim">https://www.facebook.com/FriendsOfTim</a>) is running a new fundraiser. She is selling crochet patterns to make your own stuffed Super Tim doll. From the pictures they are adorable and are supposed to be relatively easy to make. $5 gets you the pattern from <a href="https://www.etsy.com/listing/102046842/super-tim-amigurumi-pdf-pattern">https://www.etsy.com/listing/102046842/super-tim-amigurumi-pdf-pattern</a>. </div>
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</div>Thanks!http://www.blogger.com/profile/16340801247580694500noreply@blogger.com0tag:blogger.com,1999:blog-2725656828010972514.post-61271226379885305712012-06-12T08:37:00.000-07:002012-06-12T08:37:09.471-07:00Not Again!No, there's nothing seriously wrong with Tim today. As a matter of fact he's doing as well as we can hope. He's down to IV drips now along with periodic supplements and oral medication like he takes at home. Tim is also no longer classified as a critical patient which means he can do things like get up out of bed and go walking around. Tim is also eating better every day, although he isn't back to eating as much as he would on a "normal" day at home which isn't surprising since he's nowhere near as active as he is at home. These are all great things that we are very happy to be able to report.<br />
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The reason Tim is getting supplements is because some of his stats are showing up as low when they run his blood work, although none are dangerously low. He's had low magnesium, potassium and sodium while in the hospital this time around. We've seen all these things get low in the past when Tim was hospitalized before. It is usually because of a combination of things like being on IV diuretics instead of oral (they draw the fluid out much more quickly and effectively), a change in diet and a change in activity level. Usually they can get back on track by getting Tim transitioned to oral diuretics and limiting his pure water intake. Both of those things happened yesterday, and while Tim prefers to drink water he isn't too upset about just drinking Gatorade, milk, juice and a little bit of soda.<br />
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The only real frustration for Tim came last night while he was trying to sleep. Tim had a nurse he'd had last week in the ICU who is very nice, but works a little bit too much by the book and seems to have a better sense of how to treat infants than older kids. We of course understand the need for policies and protocols, but we also understand that of even greater importance is the need for Tim to get some good sleep if he is going to remain as healthy as possible. Our nurse last night initially insisted that an overhead light had to be on overnight. How this would create a good sleeping environment for Tim or anyone else is hard to understand which is why we fought back immediately, ultimately compromising on leaving the curtain drawn back a little more than we would normally want to so she could see Tim more easily. She also pushed Tim to drink more fluids before going to sleep, but Tim told her he just wanted to get some sleep so she backed off on that too.<br />
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Then, in the middle of the night while trying to draw some blood for lab work she wound up waking up Tim to get him to straighten out his arm so she would have better access to his PICC line. Now, the whole reason for the PICC line was to avoid having to cause Tim any discomfort when giving him medications or drawing blood, yet somehow while drawing the labs Tim wound up in tears because how the nurse was making him straighten out his arm was causing him pain. Then not too much later Tim was starting to settle down again and she was back in the room taking an EKG. This didn't cause Tim any pain, but it was just another impediment to him getting some sleep.<br />
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We brought all of this up with the doctors this morning and they were on board with the idea of holding off on some or all of the overnight tests until 6AM to allow Tim to get a better night's sleep and would discuss it further with the rest of the team during the day. Likewise, we also had further discussions about allowing Tim to leave the 15th floor so he can enjoy the playroom on the 12th floor. For the time being the doctors are being very cautious with Tim and are hesitant about letting him off the cardiac care floor. This, of course,makes some sense since none of us want to see Tim put in any unnecessary danger. Plus, since Tim was just taken off the critical care list it makes sense to let them get some additional data about how well he's doing with less medicine to support him and to let him build up some strength after lying in bed for over a week. Still, some of the feedback we've gotten is that they are also concerned because there aren't many if any doctors on the 12th floor and there definitely isn't a crash cart on the 12th either. Sounds like this was an error in judgement when designing a play area in a hospital. Being that in many ways Tim is even more healthy now than he was even in the days before he went into the hospital, at least from a heart standpoint, we are finding it hard to believe that he can't leave the floor. So, we will continue to push to get Tim as much freedom as possible since we know it helps contribute to a positive mental attitude for him. At some point we suppose we will wear someone down enough for them to look away from policy and protocol and see they've got a kid who just wants to play with other kids in front of them.Thanks!http://www.blogger.com/profile/16340801247580694500noreply@blogger.com1tag:blogger.com,1999:blog-2725656828010972514.post-21217553098763245682012-06-10T07:24:00.002-07:002012-06-10T07:24:45.979-07:00All Moved InYesterday's big move from the old Children's Memorial to the new Lurie Children's Hospital wound up being far less crazy for Tim than we had feared. Of course it helped that Tim was no longer in any kind of critical condition and so his transport was low risk and therefore low stress for everyone. Tim spent the morning waiting by watching Justice League cartoons and telling jokes to everyone that would listen. He even got to tell his joke to an ABC7 news camera, although we don't think it was used during any of their coverage of the move. Finally at about 1:00 the transport team arrived to get Tim moved to the new hospital. All in all it seemed like getting him onto the transport gurney in the small ICU room took longer than the actual drive to the new hospital if only because there was so little room to maneuver while they got all his pumps put somewhere they wouldn't hurt Tim while they moved him onto the gurney.<br />
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<i>getting Tim ready to move</i></div>
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<i>on the elevator heading downstairs</i></div>
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<i>getting loaded onto the ambulance</i></div>
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<i>coming off the ambulance at the new hospital</i></div>
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Once in the new room Tim instantly became more at ease. Other than the fact there were so many people in the room initially he settled right in, trying out the new TV and relaxing. Tim is very excited about the new TV since he traded in an old tube TV with about 5 channels at the old hospital for a big 40" interactive flat screen. New there are about 24 channels, including lots of Disney and Nickelodeon stations so he knows there is always something for kids on. In addition to this the TV has about 30 movies he can stream from Captain America and the latest Transformers movie to Dolphin Tale to the Phineas & Ferb movie. Tim's first pick was the Smurfs movie, which made him quite happy to be watching. Plus, Tim can surf the internet, and check out what's going on in the hospital all from a wireless keyboard, regular TV remote or a newer version of the classic hospital TV remote.<br />
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<i>finishing off the move</i></div>
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<i>all settled in and relaxing at last</i></div>
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As the afternoon moved on Tim got to take a relaxing nap and ordered in a tasty meal of ravioli, buttered noodles, garlic bread and chocolate chip cookies for dinner. Tim's appetite continues to improve and he ate more than he has since going into the hospital. It still isn't a lot of food, but every meal he seems to eat a little more which is great to see. This morning he polished off an orange juice, an entire yogurt and about half a blueberry muffin.</div>
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Last night Tim finally had a restful night of sleep. Its amazing how much better he could sleep in a room where he could close the door to shut out any of the ambient sound, pull a curtain to block out as much light as possible and just worry about getting a good night's sleep. Other than a middle of the night potty break Tim was able to sleep most of the way through without issue. It also helped that his nurse last night, Meghan, knew that Tim hadn't been sleeping well and seemed to bother him as little as possible which was also a nice treat for everyone involved.</div>
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As far as the new hospital is concerned, it's a beautiful facility. If you need to be in a hospital it is about as nice a place as you could hope for. The large private rooms with much improved sleeping accommodations for parents are just the start. Every floor has a family lounge with a TV, play area, refrigerator, microwave and vending machines along with comfortable seating and plenty of space. The 11th floor is a bustling area with a new and improved gift shop, a rooftop garden and a nice cafeteria that includes lots of options for families and staff to choose from at meal or snack time. The menu for room service isn't any different from what was at the old hospital, but after seeing the meals Tim has ordered it looks like the quality of the food has improved. Everywhere you can walk that is a public area is decorated nicely with soothing colors, interesting artwork and consistent themes for each floor. We haven't had a chance to make it to the Family Life Center yet, but based on everything else we have seen its safe to say it will be amazing too. Having not even seen the more medical parts of the building it is obvious that all the money spent on the design and implementation of the vision of the hospital was well spent. </div>
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The other big plus is that it is obvious that the staff are all very excited about being in the new building too. Their excitement is the only infectious thing we've come across so far. They are somewhat disoriented as to where to find some things and what some of the rules are, but they're happy to be here. This isn't to say they weren't perfectly happy to be at the old hospital, but one has to wonder how much the antiquated nature of the old building impacted the staff's attitude from time to time. New isn't always better, but in this case it seems as if new is definitely an improvement for everyone involved.</div>
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Finally, Tim was mentioned in a couple more articles that were published today. Check them out at the following links:</div>
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<b>Daily Herald: </b><a href="http://www.dailyherald.com/article/20120609/news/706099858/">http://www.dailyherald.com/article/20120609/news/706099858/</a></div>
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<b>Naperville Sun: </b><a href="http://napervillesun.suntimes.com/news/13075395-418/childrens-memorial-move-over-staff-families-say-goodbyes.html">http://napervillesun.suntimes.com/news/13075395-418/childrens-memorial-move-over-staff-families-say-goodbyes.html</a></div>
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<br /></div>Thanks!http://www.blogger.com/profile/16340801247580694500noreply@blogger.com0