tag:blogger.com,1999:blog-6000732330351169072024-03-18T21:13:14.731-07:00Logan's Heart JourneyUnknownnoreply@blogger.comBlogger122125tag:blogger.com,1999:blog-600073233035116907.post-16508763548554594382014-03-10T09:36:00.000-07:002014-03-27T19:35:58.570-07:00Life post-fontan<div class="separator" style="clear: both; text-align: center;">
I picked a few pictures to sum up the last 6 weeks. I haven't been blogging because we have been living! I was told we would get to a point where life feels almost "normal," I have decided that life <strong>is</strong> normal and we will live each day the best we can. Logan is doing great and we will enjoy the good days as long as we can. </div>
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Shortly after we returned home a cute girl in my neighborhood came to visit Logan and brought all the kids a gift. She told me her boyfriend had read our blog with her and had been through all these same surgeries. She brought him over for a visit the next week, and he was so kind to let me badger him with questions! He brought us HOPE. Talking with him made me realize Logan CAN live a "normal" life and he can be happy. Thanks Megan and Troy! </div>
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Logan and Troy</div>
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We had a great snow storm the end of January, and this was the first time Logan was really able to play in the snow. I usually hate the snow. Most of the time I watch out the window wrapped in a blanket while Brad plays with the kids! This time I dropped the kids off at school and Logan and I played and built Olaf together. It was a good day. I think we were able to stay out for over an hour without lips turning blue and him not getting totally exhausted. (P.S. we only took the gloves off to stick the eyes and carrot in, he was wearing gloves).</div>
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We were blessed with some really warm days in February (unusual around here, but we will take them)! Logan and I were out running errands when I realized we were driving past Wheeler Farm. I flipped a U-turn and asked Logan if he wanted to go visit the animals. (That is so not like me to stop and do something that is not "planned"). It was the BEST afternoon. I wouldn't wish a sick child on anyone, but I will tell you it has taught me to cherish every day. I stop to make memories because I just don't know how long I have to make the memories. I really try to not get caught up on the what ifs and worse case scenarios. But I am not naïve either. </div>
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Not having to carry around an oxygen tank really broadens our horizon. We can do so much more, and to see him be able to walk on his own and climb and play just warms my heart.</div>
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Playing at the park with his buddy, Samatha... I tell you folks we are LIVING.</div>
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In other news and progress... Logan is now fully potty trained! HOORAY! Once he decided he could do it, it was a piece of cake and he hasn't looked back. He is eating a little bit better and has put on a little weight. And Ashlyn got him to throw his binky away the other night ( I will do a separate post on that). It was a BIG deal! He has grown up so much, and is happy and doing great. </div>
<br />Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-600073233035116907.post-55721758313650307302014-01-09T19:13:00.003-08:002014-01-09T19:18:40.534-08:00Good News<div class="separator" style="clear: both; text-align: center;">
Do you want to hear the BEST news ever....</div>
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I no longer have to lug a 4th "child" around (aka oxygen) everywhere we go. Can you tell by the picture that I am more than ready for the company to come pick up all their stuff? It is by the front door waiting for the truck to haul it off.</div>
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Logan has been on supplemental oxygen at night since he was 8 months old, and been on it full-time for almost the last year. This is such a <strong>BIG</strong> thing for all of us. Logan loves not having a cord to worry about getting stuck on things, he can go up and down the stairs as he pleases, and he can hide from me now without a cord leading me right to him! I love not lugging it around, but I will admit I miss the leash. He has never had to learn to stay by my side because he always <strong>had</strong> to (well he never had the energy to walk anywhere so he was always carried or in a stroller) so now that he can walk he runs away. Our power bill will be a little less scary too now that that beast of a machine isn't running 24/7!</div>
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His doctor's appointment on Tuesday was fabulous. His doctor was almost at a loss for words at how good he looked (he has only known Logan on oxygen). He just kept patting his head and saying, "You just look so good." His x-ray was clear, his oxygen saturations were 95-97% and his blood pressure was good also. He told us there was no need for oxygen, and that he just needed to see Logan back in 3 months. His heart rate is a bit on the low side and his doctor will keep an eye on that with 24 hour holter monitoring in the future. But he does look GREAT. </div>
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Physically, he is healing well. We are coming along with the emotional side of things, but it feels slower. His doctor was concerned that Logan weighs the same now as he did 7 months ago (maybe a little less). Eating is his power struggle, it is something he knows he has control of and so he chooses not to eat<strong> a lot</strong>. A father of a child asked me in the hospital if Logan had a feeding tube, I said, "Yes, it is me." Meaning any food that goes in his mouth I have to usually put it there. He will go all day without eating if I don't put it in his mouth. I have tried the let him starve so he will eventually eat approach, and he will choose to starve. With being on diuretics and stuff I can't let him starve... so I continue to find ways to get him to eat. Any ideas? I have tried letting him pick the food, making fun shapes out of it... you name it, I have tried it.</div>
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The morning of his doctor's appointment when I was getting him dressed he asked me where we were going. I told him we were going to the doctor. He immediately started crying and saying he didn't want to go. He got completely irrational, saying "no I don't like hospitals and shots and doctors" It was so sad. Then when my mom got to our house to get Ashlyn and Tanner that sent him into another panic about leaving them. I think he thought he wouldn't see them for a month again. He cried in the car for 20 minutes for his Tanner and his Ashlyn. If I knew it would have upset him so much I would have made it so they could have come, but we had to go downtown to Primary Children's and you never know if it will take 1 hour or 4 hours. We all talked him through it and promised he would see them that afternoon, but holy cow it was heart breaking. I think all of us were trying not to cry. He had a great nurse that saw how frightened he was and instead of just pushing her way through she actually sat down next to us and showed him how she was going to do things so it wouldn't hurt him. She was wonderful. And he made it through and was so happy to go pick Ashlyn and Tanner up right after we left the hospital. </div>
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I have been getting the "what now" question or the "are you going to be normal now" question now that he is doing well and this surgery is behind us (Brad says I will never be normal)!<br />
Yes, surgery is behind us and he is recovering well, but he is <strong>STILL</strong> recovering. If he were to get sick right now it would be extremely hard on him. When he gets colds and things in the future he will most likely still require supplemental oxygen (Brad and I bought some tanks to keep on hand for emergencies). I hope he gets to a point where I don't have to be so paranoid, but we will always have to be careful. He functions on 1/2 a heart so any illness will be harder on him than most everyone else. So for now we are still laying low and trying not to go out much. It has been such a blessing having Ashlyn and Tanner off track. First, he has loved spending every minute with them, and second I don't have to worry so much about all the germs coming home from school. </div>
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So there is our good news; a good report from the doctor and no more oxygen...</div>
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but PLEASE still keep any yucky germs to yourself (and no I will probably never be "normal" again)!</div>
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Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-600073233035116907.post-62434886251475147902014-01-05T17:58:00.000-08:002014-01-05T18:03:41.910-08:00Catching Up<div style="text-align: center;">
Since being home it feels like we are catching up on everything we missed. We celebrated our family Christmas Thursday morning to let Logan open up his stocking and things Santa brought him to our house. The kids also kept some of their presents under the tree from Brad and I to wait and open when we got home. It was a lot of fun.</div>
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Logan was positive Santa would bring him a remote control Dusty Crop Hopper</div>
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I don't know what I was thinking when I bought this for Tanner! </div>
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We had our New Year's tradition of scones and bacon today for dinner.</div>
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We have been catching up on play time. The kids are inseparable. Logan loves having 2 friends to boss around, and they don't seem to mind being bossed around. Ashlyn and Tanner have been wonderful. Ashlyn is very protective of Logan and makes sure he gets safely up and down the stairs, and has anything he needs. Tanner is Logan's new night security (gives me a break sometimes). Logan has wanted Tanner sleeping in his room with him every night, and Tanner is more than happy to do it. When I ask Tanner where he wants to sleep he will say, "I will do what Logan needs me to do." Then Tanner will just come and get me when Logan wakes him up crying for Mom. He has been so sweet (thank goodness the kids are off track and get to sleep in). We have loved playing all the kids new Christmas games with them, and we are catching up on lots of snuggle time.</div>
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(Don't let the oxygen scare you, he had just woken up and has been wearing it when he sleeps)</div>
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Brad is catching up at work... I am sure this will take some time. He also took down and put away Christmas all by himself while I was out with Ashlyn and Tanner yesterday (it was so nice).</div>
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I am catching up on laundry (oh wait, when are you ever caught up on laundry),sleep... that is something I haven't figured how to catch up on, the treadmill, and getting control of the house. </div>
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Logan is catching up on playing, walking, running, toys, NOT eating, and still being the president of the house.</div>
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BUT... we are catching up, and it almost feels like we were never gone.</div>
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Logan has an appointment with his local cardiologist Tuesday morning. This has been a source of stress and frustration since we returned home. Our doctor in PA called and talked to our local doctor last Tuesday right after our appointment and I also called and left him a message that day with some questions. It took him until Friday night to get back to me. To say I was a stress case is an understatement. I was so worried about if Logan needed to be on oxygen here at elevation, and when he needed to be seen again etc. I asked our great group of heart mom's and everyone's kids were on oxygen after the Fontan to help with recovery so I was really stressing out about this. I hope we can get our transition of care figured out and feel like Logan is getting the attention he needs here at home. He is on oxygen when he sleeps just for the next little while, and I guess we will re-asses that on Tuesday. His saturations have been holding steady at 93% here at home. We are thrilled with that. He has his good moments and hard moments still. He isn't eating very well, I hope this resolves the further we get away from surgery. He is still terrified of us touching anywhere near his belly and chest (he still has all the sticky residue on him from his bandages, but I can't get near him with any kind of remover without him completely freaking out) so it just stays on. </div>
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I still feel like I am in sort of a haze and haven't fully let myself feel the relief of being home and done with surgery. Hopefully after his appointment Tuesday I can find that relief and start to believe that things really can be good!</div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-600073233035116907.post-64624527787969224182014-01-02T16:47:00.002-08:002014-01-02T16:47:44.961-08:00HOMEWe are home! It was a joyous reunion with Ashlyn and Tanner. Logan couldn't wait to show them his strong muscles and how fast he could run. <br />
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TO BE</div>
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HOME!</div>
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Now the challenge comes in getting out of the "survival" mode and back into the living mode. We will transition slowly.</div>
Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-600073233035116907.post-33125162282074159542013-12-31T18:19:00.001-08:002013-12-31T18:19:45.179-08:00Ready for 2014 and Homeward Bound2013 wasn't a bad year by any means. But I am ready to have this month behind us (and everything that led up to this month). I am excited for what 2014 will bring for our family and this little boy of ours with his new found energy.<br />
Dr. Rome gave us the clear to fly home tomorrow. We were nervous because his appointment took forever. As we waited for the doctor I really didn't know what I would do if they re-admitted us. It is strange how you just deal with whatever is handed to you, but I really think I would have crumbled if we had to stay here another day. <br />
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I have a lot of respect for this man and equal respect for his wife. His wife was the attending physician on the floor when Logan's lungs collapsed. I was reminded today again that Logan truly had angels watching out for him. It has been a hard thing for me to process that his surgery went well, but in something so simple as a chest tube being pulled we could have lost him in minutes. It's a good thing I didn't understand everything that was going on at the time. I was worried Logan wasn't getting enough oxygen and that they would have to intubate him. Really the concern was that Logan would go into cardiac arrest at any moment. With the Fontan anatomy the ONLY way for blood to reach the heart is through the lungs because they have re-routed the arteries to bypass the heart and flow to the lungs. By having his lungs collapse there was no longer a pathway to his heart. I get the sense everyone is amazed at the true miracle it was that Logan did as well as he did and doesn't have any lasting effects from it. <br />
I am still a little nervous about coming home. We have checked with every doctor about flying home and they all say it is safe. But I will be a nervous wreck I am sure until we are there. And then Logan adjusting from sea level to altitude is another thing that worries me. <br />
I am so happy to have the Fontan behind us, but I can't say it has lessened my worries and anxiety... YET. I know that will come with time.<br />
I am looking forward to celebrating the New Year with my entire family together. <br />
Goodbye Philadelphia!Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-600073233035116907.post-57870746454687201652013-12-30T18:08:00.004-08:002013-12-30T18:08:53.584-08:00Getting Out<div class="separator" style="clear: both; text-align: center;">
Our goal today was getting out while at the same time making Logan take it easy! The second we walk out the door of our room here Logan says, "Put me down so I can RUN!" and then he goes flying down the long hallway. My goal is to get it on video, but I am usually running so fast to make sure he doesn't get on the elevator alone that I don't have time for pictures. He has been complaining his chest and back hurt so I know he has been pushing himself, but it's like he just can't help but to run. We would have loved to just get out and walk outside today, but it was cold so we went to the mall to just have a change of scenery and get out and walk. </div>
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I am still ultra-paranoid about germs. I can't imagine how much it would hurt Logan to cough right now or how his lungs and heart would handle a cold. He is a good sport and doesn't mind wearing a mask. We just window shopped and he loved the change of scenery too.</div>
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We got him his favorite pretzels for lunch.</div>
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And went to see Frozen again. I could have watched Logan's face the entire movie. I think he liked it even more the second time. He would get so excited when the songs came on that he knew.</div>
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All tuckered out!</div>
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He has elevators all figured out and is the only one allowed to push the buttons. </div>
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We ventured back out for dinner tonight. The thought of another casserole made us all a little nauseous. So we walked a block in the freezing cold to Chilis. Logan loved it as you can see!</div>
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We are anxious for his appointment in the morning. He seems to be on the mend and we don't see any obvious reasons they shouldn't give us the go ahead to fly home. </div>
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I am still trying to figure out how Logan is processing this whole thing. He did so much better than I thought he would in the hospital. He didn't ask go home and he didn't have the response to doctors that he usually has. He would ignore them for the most part and let them listen to him and look at his ouchies. Now that we are out of the hospital it's like he has woken up from a daze and he knows what is going on now (almost like he chose to not be completely present in the hospital). He asks to go home all the time now and when Brad and I try to check his bandages he freaks out if we even try to lift his shirt. Tonight I was just simply trying to get a sticky residue off his hand and he was so frightened I stopped and just held him. I just had a gauze pad, but it must have been just enough to remind him of the hospital. It breaks my heart. I can't imagine how a 3 year old processes all of this. </div>
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Hoping for a great appointment in the morning so we can come HOME, a little dose of Ashlyn and Tanner will do this boy some good (and his mama). It's been a LONG 3 weeks away from them.</div>
Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-600073233035116907.post-33945421563896636162013-12-30T17:09:00.005-08:002013-12-30T17:09:50.009-08:00Heart FamilyThis "heart world" as we call it, is a strange thing. It brings complete strangers from completely different walks of life and different parts of the country together, and creates a bond that can't be explained. You really feel sort of a kinship with families that know your struggles. That have been in your shoes, and that just GET it. <br />
I wrote this <a href="http://logansheartjourney.blogspot.com/2011/01/only-thing-i-miss-in-philly.html">post</a> back in 2011 about our friends the Jackleys that we met here in Philadelphia three years ago. Lots of time has passed, but we have stayed in touch. They said they wanted to spend time with their "family" on Christmas. We were lucky to be that "family." They were so incredibly sweet and generous to spend their Christmas making ours a little brighter. They spoiled Logan with more presents (he LOVES unwrapping gifts) and they brought us dinner that lasted us for 3 nights.<br />
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The Jackley clan with Logan</div>
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Stacie and I with our sweet boys 3 years ago.</div>
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Now look at these boys.... they are our miracles. </div>
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We loved the Christmas visit. We thought that would be our only chance to see them, but with our crazy set back the day after Christmas earning us a few more days here we got a chance to see them again yesterday.</div>
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They were kind enough to open their home up to us. It was so nice to be in a HOME. Not a hospital, not a "hotel" room. It is crazy how different a home can feel. </div>
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Logan LOVED it. He was in heaven and loved playing with friends (as much as he loves mom and dad's undivided attention I think we are getting old)!</div>
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Thank you Stacie, Tommy, Kaylin, and Kellen</div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-600073233035116907.post-34001454031423780962013-12-28T19:11:00.001-08:002013-12-28T19:20:45.695-08:00FREEDOM<div style="text-align: center;">
It really happened, we <strike>walked</strike> RAN out the doors of the hospital today. </div>
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We really are on the roller coaster ride of our lives. Up, down, up, down... we are appreciating the upside right now! Crazy to think Logan recovered so fast from 2 collapsed lungs on top of everything else, but his last 2 x-rays showed his lungs were great. Dr. Spray said he is completely confident that his lungs collapsing were solely a "mechanical" thing from the tube being pulled and that his lungs are recovering and strong.</div>
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Logan wasn't sure what to think when I told him we could leave. At first he said he didn't want to. And then when they took out his IV and took him off all his monitors he understood that he really could LEAVE, and he started running and didn't stop. LITERALLY. He has never walked the distance he did leaving the hospital in his ENTIRE life, and he not only walked he RAN most of the way. It is a moment that will be stamped in my memory forever. </div>
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We almost lost him to an elevator! He surprised us and ran so fast in front of us and walked into an open elevator. We barely made it before the doors closed! Scared me half to death. We are so used to having him attached to an oxygen cord/leash! </div>
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A view that probably doesn't mean much to anyone but Brad and I, but the distance of this hall would have been like Logan trying to run a full marathon before this surgery, and today he ran all the way down it without even getting winded. </div>
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FREEDOM</div>
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Logan has felt it. He knows it. He keeps trying to escape from our room at the Ronald McDonald House to run some more. We have had to force him to rest because he has already over done it. I have a feeling he is going to be hard to keep up with now.</div>
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We are watching him close and will stay in town for a few days. We have an appointment Tuesday morning and if things continue to improve and look good we will get the thumbs up to come home. </div>
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I have so many pictures to post of Logan making the rounds this morning to tell everyone goodbye. I will get to it sometime this weekend. I feel so emotionally drained. We got to our room here at the RMH and all three of us were asleep within minutes of dropping our bags. I can't tell you how nice it was to lay on a bed and have some privacy!</div>
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Thank you everyone again for your love, support, and prayers. Although we are so far from home we have never felt alone in this. </div>
Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-600073233035116907.post-65262175946893341722013-12-27T13:40:00.001-08:002013-12-27T13:40:13.704-08:001 in 100,000Bi-lateral pneumothorax from a chest tube being pulled happens in about 1 out of 100,000 cases. Logan was that #<strong>1</strong> yesterday. And from the sound of it maybe the first in this hospital (at least as long as those working here can remember). He has caused quite a ruckus around here.<br />
Yesterday was a really, really hard day. Today as we process everything it is a little surreal to learn more and find out just how scary things were. If I could have taken a picture of the hall lined with doctors waiting for Logan and then the doctors waiting in his room, it was completely organized chaos. It was the scene you watch from the sidelines and pray for that poor family, never thought we would be that family. <br />
They placed the new tube in Logan and were able to drain the air bubbles immediately and his lungs responded very well. They stabilized him all day in the ICU and then let him go back to his old room that was familiar and more comfortable for the night. We had the most thorough, organized, OCD nurse I have ever met last night (that was probably not an accident). She had her eyes glued to every tube, chord, and hose hooked to Logan. Brad and I took sleeping shifts. He laid with him while I slept and then he went back to the Ronald McDonald house in the middle of the night and I got to snuggle up next to him. He was absolutely miserable yesterday. After they placed his new tube he refused to move a muscle. He wouldn't even move his head once he found a position he was comfortable in. They wanted him to get up and move around so he could breath deep.... yeah right. He wouldn't eat or drink let alone let anyone near him to touch him and make him move. He was miserable. He was scared, and I am sure just plain sick of pain. The doctors back in the CCU (step down unit) were a little more sympathetic than the ICU docs. In the ICU they were barely giving him anything for pain because they wanted him moving not just sleeping. When we got back to our room and the doctor here saw how miserable he was he let the nurse give him morphine through the night to help him sleep and relax. I went to bed feeling so defeated. Like we were starting all over in the recovery. Just the day before he was playing with toys and one day away from discharge and now he wasn't eating or drinking again and was in so much pain.<br />
This morning a new person from the surgery team came to talk to us and said Dr. Spray had looked over his morning x-ray and numbers and wanted the tube pulled. This surprised us because we were told yesterday it might need to stay in 48 hours. Dr. Spray said he was confident that is was only air bubbles that caused the lungs to collapse and that no damage was done to the lungs themselves (like a tear or hole in the lungs). We wouldn't let her touch him until we had talked to the attending on the floor and she called to confirm with Dr. Spray. Everyone on the surgical team is walking on egg shells around us now. I made myself VERY clear about our feelings of how things happened. Unfortunately I know things don't always go perfect.... it is just when it is your child it is hard to not want to blame someone. I will say this though. The team of attending doctors were ready for anything, and they took care of a scary situation without panicking us (even when they were all a little panicked).<br />
So they pulled the tube this morning. They gave Logan some versed (a medication that gives you a little bit of an amnesia sensation so he won't remember it) and he was like a new kid. He would finally sit up and he started acting all funny and loopy from the med. <br />
What a freaking ROLLERCOASTER ride. Logan is done with the hospital. He is done with ouchies and meds and tubes and chords. I think now that he no longer has any tubes in him they might discharge us to the Ronald McDonald house tomorrow (it is less than a mile from the hospital). And then we can come in for follow-up before we come home.<br />
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To show just what a rollercoaster ride these last 3 days have been all these pictures were taken in a 48 hour period.</div>
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Playing great on Christmas</div>
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Racing through the hall on McQueen Christmas night</div>
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The morning of the 26th. </div>
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They were actually surprised at how good he looked for what was going on inside. This is usually the problem with Logan, he doesn't show on the outside the absolute chaos going on inside of him. I know people will comment all the time that he doesn't "look" sick. (Me on the other hand I know I look like a wreck, I didn't even have a chance to brush my teeth before all this happened. Why they do everything so early in the morning at hospitals is beyond me). </div>
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The team was all scrubbed and ready in his ICU room.</div>
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They let me hold him until the last possible moment, and then they let us wait outside the door. They didn't fully sedate him because they needed him to be able to breath on his own.</div>
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Such a drastic change in such short time. He was so miserable.</div>
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We tried to get him to blow bubbles or the wind mill, but he just was not having it (I didn't blame him).</div>
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I left his side long enough for a shower yesterday, and as you can see he wasn't about to let me leave him more than that. He had a grip and wasn't letting go. He would wake up screaming or thrashing if one of us wasn't in the bed with him.</div>
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This morning after the tube was pulled he sat back up and played with a punching balloon.</div>
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And then got really loopy from the meds and couldn't sit up on his own anymore. He just tipped right over! As you can see we were watching him close and anticipating this. We had protected him with pillows on the hard bed rails.</div>
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By the afternoon he was back to the playroom trying to play video games that Brad and I have no clue how to play.</div>
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What a ride we are on with this little boy. We aren't joking when we say Logan likes to do things his own way.</div>
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I have tried to find something positive to make of this whole situation. Here is what I have come up with...</div>
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1. Logan is an amazingly strong little boy who continues to just keep everyone on their toes,, and likes to leave an impression.</div>
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2. I really feel like the Spirit works through people in different ways and even if I didn't recognize it at the time, I know it was our Heavenly Father that helped us know something was wrong yesterday and we got it taken care of in the fastest time possible before it caused permanent damage.</div>
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3. Logan told a world renowned surgeon to move out of his way (When Dr. Spray came into the room he stood in front of the TV that Logan was watching. Logan got mad at him and told him to move). The entire medical staff said Logan is the only person that could have gotten away with telling Dr. Spray what to do.<br />4. Prayer works. In all the chaos I sent a quick text to our parents and my sisters to pray. I know they had anyone they knew praying for him. We felt those prayers.</div>
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5. He continues to be our miracle.</div>
Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-600073233035116907.post-47482199269971825292013-12-26T14:32:00.001-08:002013-12-26T14:36:53.169-08:00Back to the ICUThis morning could go down as one of the scariest we have ever had. It all started out exciting... Logan was going to get his chest tube pulled. That meant HOME was within our reach. The doctor from the surgery team came to pull his chest tube (not Dr. Spray this is usually done by a Resident or NP). Pulling chest tubes are normally a pretty minimal thing. We gave Logan some pain meds right before and it should have been done in a matter of minutes. I was alone with him (it was early) and I held him while the tube was pulled. Then I watched as the doctor struggled to get the hole closed where the tube was removed. I think skin had grown over the stitch that was made to be pulled closed. This is where I get a bit angry. The doctor was not prepared for things to not go perfect. He had to leave the room to get a different dressing to put over an open hole in my sons chest. I don't know if the doctor is to blame, or if Logan took a breath at the exact wrong moment when the tube was pulled, but everything that could go wrong went wrong. The doctor patched him up and left and Logan seemed okay for all of about 5 minutes. Then I could tell something wasn't right. His breathing changed and he was miserable. I called for the nurse she checked his respirations, HR, and sats and thought all looked well. Brad arrived and both of us knew something wasn't right. I called again and she got the doctor to come (the attending doctor on the floor who we love, not the guy from the surgery team). Within minutes our room was full of more doctors than I could count. They did an x-ray and air bubbles had entered his chest cavity when the tube was pulled. This made both of his lungs collapse. (We didn't learn how serious it really was until a few hours later). I was so impressed with how calm the attending doctor stayed. She had control of the room and had the room set for worst cases scenario (having to puncture a hole to release the air). They were having a hard time getting in contact with Dr. Spray, Logan's surgeon, because he was already in the OR. I held him while he struggled to breath (he was put on a high flow of oxygen) he had 2 x-rays and we were wheeled together on the bed down the hall to the ICU. Dr. Spray met us in his room explained that they needed to insert another chest tube (a different kind in a different place) to get rid of the air bubbles. When they had me sign consent I said I would only sign if the same doctor that took out the tube was not allowed to touch him again. They prepped his ICU room and they were able to do the procedure in the ICU. Brad and I got to wait outside the door the entire time. <br />
Now we sit in the ICU and it feels like we are starting over. They tell me he will feel better tomorrow, but right now we can't get him to move. He hurts. Yesterday my boy was able to play with all of his toys, and now he is miserable again. I think he is feeling defeated. Like really what else are you guys going to do to me. <br />
This new chest tube has a suction machine on it that pulls out the air bubbles and then somehow helps the lungs re-inflate. The x-ray after the procedure was already a lot better. He is still needing oxygen and like I said is still in pain, but he is stable.<br />
Crappy, crappy set back. Brad and I have been so worried about the chest tube being pulled the past couple of days. We thought it was because we were skeptical of the fluid maybe not being completely done draining, but maybe this is why. Maybe Heavenly Father was preparing us for this. Who knows, but I hate that it had to happen to my son.Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-600073233035116907.post-62005106993172165642013-12-25T13:06:00.000-08:002013-12-25T13:08:00.371-08:00Merry Christmas<div class="separator" style="clear: both; text-align: center;">
We had a virtual Christmas this morning and were able to watch Ashlyn and Tanner open their presents from Santa, and they watched Logan open some of his too. It was great. Ashlyn has face timed us at least 6 times this morning to show us each new bracelet she has made with her rainbow loom, and Tanner is driving his remote control car up ramps on the couch and being a crazy 6 year old boy. It did my heart good to be able to see their joy.</div>
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As we are far from home I was reminded from a friend that the first Christmas was also spent far from home in a humble stable and there was still joy and peace. I have thought about this all morning. I am grateful for my Savior and his love and life. We too feel joy and peace today. Ashlyn and Tanner are happy and Logan is making progress. This is the best gift we could ask for.</div>
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Logan was so excited to open presents with no strings attached... he didn't have to take any meds or do anything that gave him ouchies to get the present. He was spoiled by the hospital. I can not believe how many toys they were able to give each kid.</div>
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Santa left this present under the tree at the Ronald McDonald House for Logan. Brad brought it with him this morning. Only Santa could have known how much fun Logan had playing the little guitar the other day to know he would want his own. All morning he would make me shake my head and dance to Rock and Roll with him.</div>
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Word is out that Logan likes Cars!</div>
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A highlight of our morning was this sweet therapy dog named Tugger that came to visit. I have never seen such a big dog be so well mannered and sit in a chair. He just sat in that chair and let Logan pet him. It was so sweet. We face timed the kids to show them our visitor.</div>
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We spent Christmas Eve eating ice cream for dinner and watching Toy Story. </div>
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Logan made a friend who likes cars as much as he does. We have met them in the playroom the last couple of days and the boys will hobble around and try to play together. Logan has had a really hard time sharing his toys though. Who is surprised.... I will be the first to admit he is spoiled!</div>
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His friend was able to go home yesterday... we are only a few days behind him we hope (he was recovering from the same surgery). </div>
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Logan made this little guy with the OT yesterday. He is getting pretty good at doing things with one hand. I wonder when he finally gets his IV out how long it will take him to start using his left hand again.</div>
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We made huge progress with meds yesterday. We switched pain meds to chewable tablets instead of liquid and found a few more ways to get them down. (Like sneaking them in while eating skittles). He likes getting out of bed and choosing his own prize too.... the prizes are working to motivate him again.</div>
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The wall of our room decorated with pictures from the kids and Logan's drawings.</div>
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We are still waiting for his chest tube to stop draining. It is decreasing every day and that is exactly what we want to see. We hope that means it can come out tomorrow.... that is one step closer to home!</div>
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<br />Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-600073233035116907.post-59709599092448383302013-12-23T18:49:00.000-08:002013-12-23T18:49:25.700-08:00Our Day in Pictures<div class="separator" style="clear: both; text-align: center;">
I knew we were in for a long day of keeping a 3 year old entertained in a hospital when Logan woke me up at 3 a.m. and wanted to play with play dough. I could not convince him to go back to sleep so we finally compromised and watched Cars 2, but then he would get mad at me if I closed my eyes.... Oh Joy. I ended up just spending the rest of the night in his bed with him. He is really needing that extra security and comfort.</div>
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On the docket today with physical therapy was stairs. They wanted him to walk up 3 stairs and watch that Brad and I knew how to help him without hurting his healing chest. Logan ended up walking the entire flight of stairs and then kept going and walked another flight of stairs. I might have teared up a bit seeing this. Logan has never been able to climb our stairs without taking a break or being completely winded at the top. Today his muscles were weak, but cardiac wise he was so strong. It was awesome.</div>
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We were trying to tell him he could walk down the stairs now, and he said no and went to walk up the next flight!</div>
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I am so excited for the things this little boy is going to be able to do. There is going to be no stopping him.</div>
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Music therapy today was adorable. He sang "You've Got a Friend in Me" from Toy Story while strumming the ukulele. I wish I knew how to post the video. He rubbed the skin off his finger he was playing so hard. He loved this.</div>
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I don't think I need to explain why a pair of pants would need to be so contained.... lets just say you could smell the stink from our room down the hall. (At least things are finally moving again)!</div>
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Brad and I had to take a CPR/Choking class. I just renewed my CPR certification a few months ago, but I will take refreshers whenever I can. I pray it is something I never have to use. It is a little un-nerving when they refer to the manikin as your child though.. it really makes you pay close attention.</div>
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We loved his nap position today. He is finally able to move his body on his own, he loves wrapping his legs up!</div>
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Vitals were taken in McQueen tonight.</div>
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And this has been our battle of the day. Taking meds by mouth. He doesn't want ANY of it. Even the most insane amount of bribery and toys couldn't get him to take Tylenol. This is the one thing Logan has figured out he has control over, and I have a feeling it is going to be a huge battle. We got away with sneaking some crucial meds in apple sauce, but I think he will catch on to that too. He is still able to get some meds through his IV, but if we ever want to come home he needs to take them by mouth. Any tricks???</div>
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From a medical standpoint he is holding steady. He is draining less, and we hope to keep seeing that trend. He was negative in his input vs. output yesterday so we aren't sure if the decreased draining is because he was too dry overall, but we should see more tomorrow if this is still a downward trend. Let's keep our fingers crossed. The doctor referred to this part of the recovery as the tedious part of the Fontan recovery. He is stable, and cardiac wise looks great, we just need him draining less.</div>
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They are less worried about his fenestration, they say it has flow though it so we most likely will not have to visit the cath lab. It is now just waiting for that chest tube to come out and then making sure the fluid stays away!</div>
<br />Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-600073233035116907.post-22008028891344262182013-12-22T20:15:00.001-08:002013-12-22T20:15:45.051-08:00A Good DayWe had a good day today. Things feel like they are moving in the right direction. Our night nurse was great last night. Logan had the best night yet, and that means so did I. Good sleep always helps you feel better. And lucky us, we get the same nurse tonight. She promised to do everything the exact same.<br />
Logan's chest tube drainage decreased today, he moved a lot more, he ate and drank a lot more, and he was happy. We are still trying to manage his pain, but I think we are figuring things out. Today was the first day I allowed myself to think of home. I still don't think it will happen tomorrow (or the next day), but I doesn't feel so far off. Making it home by Christmas I think will be next to impossible. We prepared for this, but it doesn't make the reality of it any easier. As I prepared for this surgery I told myself and everyone else we would be pushing it to be home by Christmas, but deep down I was still hoping.<br />
It is hard to remember it is Christmas time. I see the decorations, but hospital life is so strange. Days run together and everything feels like you are simply just trying to make it through each hour. It is hard to think beyond yourself, or your child. I was humbled today when I talked to a man I had mentally made pretty harsh judgments about. He looks really rough and kind of scary. Then he stopped in the hall and let Logan crash into him in his Lightening McQueen car and went out of his way to talk to us. Then I saw beyond the tattoos and piercings and saw a dad that loved his baby. Everyone here is fighting for the life of their child. The traditional Christmas celebrations take a back seat while we all just hope and pray to keep our families together for as long as possible.<br />
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We are saw more and more of our Logan as the day went on today. He was a lot of fun and it was a full time job for 2 to keep him busy!<br />
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I love my snuggle time with him. He will ask me to come lay with him and he always has something that needs to be rubbed. Today it was his belly, and then he loves the security if you just holding him tight. I was snuggling him up close after getting his chest tube drained (this was hurting him today because it pulls inside of him) and he wouldn't let me move my arms from his shoulder and legs until he fell asleep. I am sure he needs to feel some kind of security. I can't imagine how he is processing the trauma of all of this in his mind. </div>
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Brad just laughs at me when I don't move after he falls asleep. I love snuggling him.</div>
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We played play doh and cars</div>
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He had to take a quick break from playing in the toy room for mom to hold him quick and rub him because something felt ouchie. Brad got the camera out he immediately put his arm up around my neck then stuck out his tongue! </div>
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We have some sort of gaming system in our room like a play station or something (not even sure what it is) And Logan loves to pretend he can play this Monsters Inc. game they have. Neither Brad or I know how to even use the controller so it is comical. Logan has figured some things out, but usually we have to turn it off because he gets frustrated or stuck and we don't know how to help him.</div>
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This is when he came back for nightly meds. It was a battle to get him back to his room again. Then when we got him in here he hid and refused to leave the car!</div>
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He made so much progress physically today. It was great to see him be able to get on the floor and move a little more. We are making progress.</div>
Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-600073233035116907.post-34054024889690448562013-12-21T19:41:00.000-08:002013-12-21T19:48:01.247-08:00 Post-op Day #6<div class="separator" style="clear: both; text-align: center;">
Here is a picture worth documenting. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglp1aFriKwl_qwqX2W7joyasiO8N-RR_4zDh5DiAxk-nti6G3fbhqfzIZcXYUOaJTyaY5RL-A010gpPnaXm6hm8ru1lNjkPGlnxyMU4KSmQvvkgQsW-V0VNsLSW0OJpDI8bMr6i8zOp9UY/s1600/IMG_5770.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglp1aFriKwl_qwqX2W7joyasiO8N-RR_4zDh5DiAxk-nti6G3fbhqfzIZcXYUOaJTyaY5RL-A010gpPnaXm6hm8ru1lNjkPGlnxyMU4KSmQvvkgQsW-V0VNsLSW0OJpDI8bMr6i8zOp9UY/s400/IMG_5770.jpeg" width="300" /></a></div>
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Logan took his first voluntary bite of food today. Voluntary meaning he actually held the food and put it in his mouth on his own. Everything he has eaten so far has had to be fed to him and coaxed into him. Hooray... we will take any progress.</div>
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He finally cooperated for physical therapy today and had a great time. He walked a lot more today and even stepped up on a step.</div>
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He got lots of prizes today... we needed every amount of bribery we could come up with. He is done getting ouchies and taking yucky medicine. Thank you to all my ward members who sent prizes for Logan... I am sure we will use every single one of them. </div>
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He spent as much time as he could in the playroom today. He was hooked up to IV meds and fluids most of the day so we took advantage of every break of being tethered to the bed and played. </div>
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Dad was his security today.</div>
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(I got the middle of the night shift)!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6SdavIDXUm1HG5vMh5QPgZ6FXLZr5abwsxumA5iZgp-inQ6vpXg_LkvJTbSiobhAJ8AkdCuFxXtmMRcMtl35cr9BW1RLubrYsnpOKZOi6SAe8ON95FQ7G7IGQjvnZ1RGWS0K_G3cfJyfc/s1600/IMG_5217.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6SdavIDXUm1HG5vMh5QPgZ6FXLZr5abwsxumA5iZgp-inQ6vpXg_LkvJTbSiobhAJ8AkdCuFxXtmMRcMtl35cr9BW1RLubrYsnpOKZOi6SAe8ON95FQ7G7IGQjvnZ1RGWS0K_G3cfJyfc/s400/IMG_5217.JPG" width="400" /></a></div>
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Logan has claimed this car as his own. Today another little girl used it for awhile and he had the biggest melt down. This gets him from our room to the toy room and he LOVES it. He will crash into nurses and beep the horn at anyone passing. He loves escaping his room. We had to coax him out of the toy room tonight at 9:00 pm for his nightly meds and vitals. He refused to get out of the car outside of his room. He said he didn't want to go in his room because he didn't want any ouchies. This breaks our hearts.</div>
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They know Logan loves to paint so the child life specialist will leave out paint and little things for him to paint when he can escape to the toy room. </div>
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The cute little blue hippo sitting on his head was the sweetest gift from the patients mom that was next door to us. There is a glass wall with a curtain dividing us so it is relatively quiet but it does not keep out a screaming 3 year old. We met this sweet family yesterday and got to share stories (her daughter is 17). I apologized for waking them up at all hours of the night. They were able to be discharged today HOORAY after a very long time being here. I was so happy for him. They gave Logan this Hippo and wished him well. There are so many good people in the world. </div>
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We had some really rough times today, but we also had some good ones. </div>
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For the medical details he is still draining a lot out of his chest tube. They added another diuretic today and he is having success with wet diapers.... we have had to change his pants three different times today because he fills the diaper to capacity. We hope he can start loosing fluid that way instead of his chest tube. Last night was an especially hard night, so we are hoping for a better night tonight. I asked that they switch any med they could back to IV instead of oral because he won't even take his Tylenol anymore. This helped a lot today. Here is to hoping for good sleep and less fluid.</div>
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Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-600073233035116907.post-29762325622421322322013-12-20T18:18:00.002-08:002013-12-20T18:18:55.133-08:00Feeling a little discouragedI think all three of us feel a little defeated/discouraged today. I know we are only 5 days out from surgery (I can't believe some kids are able to go home at this point). But I knew going into this that we would have some bumps in the road, like always Logan likes to do things his own way.<br />
Logan had a great night. Our room is quiet. I slept pretty good until 5 am when I got up to help with x-ray and realized Logan still hadn't peed. 3 doses of diuretics and still no pee. Pretty crappy, I was nervous. He was miserable and couldn't get comfortable after he woke up. The doc came and checked him out. <br />
Now at the end of the day this is where we stand...<br />
His x-ray was unchanged today from yesterday, meaning all the draining from his chest tube was not draining the pocket of fluid in his lungs. He has what they call a pleural effusion on his right side (common issue with this surgery).<br />
He is draining an insane amount of fluid out of his chest tube. It went from 50 mls on Wednesday to 370 mls yesterday, and he is on track to pass that number today. You want to see that number decrease every day and in a lot of cases be completely done draining by now. <br />
His labs showed his numbers are off. His potassium is low and a couple of other things. I asked if they could do his potassium through his IV so I didn't have to cram it down his throat (that is the worst tasting stuff I have ever tasted). So we started it through his IV and I guess some patients say is kind of burns. They ran it pretty diluted, but Logan would just scream the whole time that it hurt. We tried to console him and help it for 20 min with heat packs and distractions, but it never eased up so we called it quits. By that time I was crying with Logan, and I don't think Brad was far from joining us. It was heart breaking.<br />
I hate hospitals. I hate that by trying to help Logan we have to hurt him. I know the nurses think we are too easy on him and don't push him to do things that hurt. But I don't care, I really, really don't like seeing him suffer.<br />
They did an echo to check his function and the fenestration in the conduit. Now this is where I might loose those of you not familiar with this surgery. With the Fontan they detach his inferior vena cava from his heart and add a gortex conduit to bypass the heart and connect it to the pulmonary artery to give a passive flow of blood to his lungs. They do a fenestration or a little pop off hole to help with pressures. The surgeon put a good size fenestration in Logan's conduit, but in the echo it showed his body has possibly already "clotted" around that hole. This gives him great oxygen saturations, but doesn't give a pop off for extra pressure. This could be the reason for all the extra fluid.<br />
The other theory could be a medication he was on prior to surgery, Carvadilol, was started again yesterday. This isn't a med they use a lot out here, but felt like it was something his docs in Utah wanted him to continue on. This drug helped Logan so much before the surgery, but maybe he doesn't need it anymore. This drug slows the heart rate and helps with function. It could be that it slowed his heart rate down too much and is allowing fluid to build up. We discontinued the med tonight and we will see how the weekend plays out. If his drainage slows down that would be awesome. If it doesn't Logan will be visiting the cath lab to have that fenestration opened again and then put on some anti-coagulant drugs.<br />
We are taking one hour at a time right now. Some hours today have felt like days and some have been good. We are trying to not give the hard narcotics for pain too much because they cause constipation and can cause urinary retention so we are treating pain with an IV pain med, but he can only have it every six hours. We do Tylenol in- between, but it gets rough. It is so hard making these decisions because everything has a side effect.<br />
So there you have it. Probably way more information than anyone other than a heart mom wants to read, but that is our day.<br />
We had few good moments today. We spent some time in the toy room. They had a Christmas party and Logan loved painting some ornaments that are now hanging up in our room. He played really well for a good hour in there. He also played play doh for awhile, but that got frustrating with only having one hand (his IV is in his left hand so he can't use it).<br />
We can't get him to walk or stand up today, but we are trying. He has gotten about 5 new "reward" toys today as bribery to get meds down and stuff. <br />
He is requesting a trip to the toy room, so we are going to go sneak in after hours... I will post some pictures later.Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-600073233035116907.post-2920739269203527192013-12-19T17:35:00.000-08:002013-12-19T17:35:09.323-08:00One step back one step forwardThat is how the last 24 hours have felt around here. Let's hope now we can keep taking steps forward.<br />
So here is the scoop for now...<br />
Logan was transferred out of the ICU yesterday to the step down unit. Unfortunately since they are crazy busy around here we were moved to a shared room. The family we shared with was as sweet as can be, and were not a problem at all, but their baby was 10 weeks old and cried like a baby at that age should who is being starved all night in preparation for surgery today. My heart went out to them, so I tried hard not to get frustrated at our situation, it was out of my control. Logan and I didn't get a whole lot of sleep. I requested first thing this morning to be moved to a private room if at all possible. Our wish was granted.... hooray! We are now in a super quiet, private room. Funny story though, at 4 am when the baby was crying Logan was wondering what in the heck was going on. He asked me to make it stop. As we were preparing to move rooms this afternoon they moved in a new baby to our shared room and he covered his ears and said, "I don't want to hear a baby cry." It was the cutest little baby only 2 days old and Logan wouldn't even look at him. Our new room is WONDERFUL. I am trying really hard to focus on the positive.<br />
Logan has had good moments and not so awesome moments. He is exhausted and just simply making him sit up wipes him out. Physical therapy and Occupational therapy keep coming to work with him, he is not a fan of them. I was starting to get worried with the lack of progress we were making, but then this afternoon we have finally started making progress. <br />
Not to give too many gross details, but Logan just needed to poop! We finally took drastic measures today and had to do an enema... we had tried everything else, but nothing was working. It finally worked so we are hoping he will eat now. Since Sunday night his total food intake is probably the equivalent of one strawberry, 15 Fruit Loops, and some applesauce. He threw up Tuesday night after trying to eat something and has been turned off to food ever since. We have ordered him everything you can think of, but he just doesn't want to eat. He is drinking a little better so that is the most important.<br />
We have tried to get him sitting up and out of bed, but he cries that it hurts too much. We finally had to do some tough love last night and made him get up. After some coaxing and helping him see he could do it we finally had success and got him to the toy room. This lifted his spirits a little. It also got his chest drain tube moving. We aren't sure if the drain found a pocket to start draining or if he is accumulating more fluid around his lungs, but his drain tube is draining almost triple today what it has any other day. I am trying to stay positive, and not let this panic me. The doctor's aren't too concerned, but aren't ignoring it either. They will know more after his x-ray tomorrow morning. Getting post-fontan kids up and moving is really important so fluid doesn't sit in their lungs and Logan has been very sedentary so we hope it will help now that he is up and moving more.<br />
They have a Lightening McQueen car that got him out of bed today. The physical therapist was adamant he try to walk. He took a few steps and was pretty proud of himself. We made it back to our room and he barely got back in bed before he was asleep. It just exhausted him.<br />
We thought he was on the up hill after seeing him play so well, but then he woke up and was absolutely miserable and required a "rescue" of morphine to get things under control. Since then he has done better.<br />
So we have good moments and hard moments. Logan continues to be so sweet and polite to everyone, but is getting less trusting of anyone who walks in the room. I really hope his x-ray shows improvement tomorrow and his drainage slows down.<br />
I got a lot of pictures yesterday and today I will share. I do this for my family that I know wishes could be here with us. <br />
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First attempt at sitting up yesterday.</div>
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I am so glad someone else had to be the bad guy.</div>
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He stood up for like 5 seconds.</div>
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Our reward was a snuggle with mom. I say our reward because this was the first time I really got to hold him.</div>
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A trip to the toy room after we were transferred out of the ICU.</div>
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Keeping up on our oral hygiene</div>
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More snuggles this morning</div>
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Physical therapy again, this time we took a few steps.</div>
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He was so proud of himself, he wasn't sure he would be able to walk.</div>
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The best pic of all he is SMILING for the first time since his surgery.</div>
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Exhausted after playing</div>
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Rested and right back at it.</div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-600073233035116907.post-37859388799974027882013-12-18T14:14:00.000-08:002013-12-18T14:14:12.960-08:00On the receiving end...<div style="text-align: center;">
I have been thinking for a long time about how to write a post to some how express and portray my gratitude and thanks for all that has been done for our family. I still can't find the right words.</div>
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It is humbling being on the receiving end of others compassion and charity. My heart has been so touched, and our lives made easier by others generosity. </div>
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Thank you everyone for loving us, for praying for us, for helping us get here, for helping with things while we are away, for spoiling Ashlyn and Tanner. It is fun talking with them every day and hearing the excitement in their voice about what a Secret Santa left them, or what an aunt has given them, or what crazy thing they have done to torture my dad. I don't think they have had time to miss us yet!</div>
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We are so blessed to be surrounded by so many great people. </div>
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My parents being at the top of that list of great people.</div>
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When we made the decision to come here to Philadelphia again, I didn't even have to ask them if they would take care of Ashlyn and Tanner. They just started making plans of things to do with them to keep them distracted and busy while we would be gone. They just stepped up and took any worry or stress about that away from Brad and I.<br />
In preparing for surgery I was a stress case trying to keep Logan healthy. Some would say I crossed over to the "crazy" side in this department. But they helped out in so many ways watching Logan for me so I could teach my classes or doing my grocery shopping for me so I didn't have to take Logan out. They were always there, and I am so grateful for them.<br />
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Again, we have been so overwhelmed with the out pouring of love shown to our family. So many things that can be so stressful have not been because of other's generosity and love.<br />
We have been touched and blessed with the true Spirit of Christmas this year, and it is a feeling I will never forget. <br />
It was hard for Brad at first to accept "help" from others. Anyone that knows him knows what a "planner" and "do it yourselfer" he is. This has been a lesson in accepting charity and allowing to be served. He also has been so touched and amazed at the generosity and sacrifice of others.,<br />
I can't express what it means to me as Logan's mom to know how many hearts he has touched and how many people love him and care about him. I wish I could share in detail about everything that has been done for our family. We are so truly blessed, and I hope and pray those who have sacrificed for us will also be blessed.<br />
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-600073233035116907.post-69708675026026859492013-12-18T07:05:00.003-08:002013-12-18T07:05:53.825-08:00Today's Plan<div class="separator" style="clear: both; text-align: center;">
Notice anything different today?</div>
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We are on room air folks! </div>
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They took off his nasal cannula early this morning and he is holding his own keeping his saturations at 87%. </div>
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There is talk of moving out of the ICU today to the step down unit. That would be great and would give Logan access to they play room. As soon as they take his arterial line out he will be able to move around more. His chest tube is still draining too much to remove, so it has to stay in for at least another day. That is okay, we have learned you don't rush that. He still hasn't been able to get up and walk. He wants to, but when we try to sit him up it is too painful. We hope to get him up today. His poor little belly hurts and he is so backed up from all the pain meds that we hope to get that resolved too. It is funny when he wanted to drink we had to hold him back, now he CAN drink and won't!</div>
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They say he is following the typical post-fontan trend so we will keep rolling with his timeline.</div>
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As hard as it is being away from home and my kids, it is so nice to not have anything other than Logan to worry about. I feel so much less anxiety and stress not being pulled in different directions. This hospital is familiar and feels like our hospital. I know so many faces here and so many people remember us from last time. I guess what I am saying is that is still feels right to be here.</div>
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I was able to be part of rounds at 2:30 this morning and again at 8:30 this morning. All the doctors are on the same page and are so good with Logan and listening to me. They listen to my input and let me ask any questions. I was able to tell them how a particular pain med didn't work for him last time, they didn't even question me they took my word and switched to another option. </div>
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Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-600073233035116907.post-91385308633175281312013-12-17T14:35:00.000-08:002013-12-17T14:35:12.390-08:00Post-op Day 1Last night was a long one. I wasn't about to leave Logan to wake up to a stranger so I stayed bedside all night. I tried laying down on a bed/couch in the room for the first part of the night but every 10-20 minutes he would call for me even if he was still out of it. I ended up just moving to a chair right next to him and stayed there all night holding his hand. He still has lines going directly to his heart so I was too nervous to lay right with him (and for half the night he chose to lay sideways in the bed). They kept him partially sedated with meds and kept on top of the morphine so he rested. <br />
One of the hardest things has been denying him apple juice. He has been SO thirsty, but he is fluid positive (meaning he has taken in way more fluid than he has been able to put out) so they have to really limit his fluid intake. It is so sad having to try to distract him. I can give him ice chips and he likes those, but he really just wants to guzzle a drink. He also has no appetite for solids.<br />
Today they stopped the sedation meds and the milrinone so his heart is working on its own. His blood pressure has been pretty random. It was too low last night and then high today. Same with his temperature. His body is trying to figure out his new circulation, it will come with time.<br />
He hasn't wanted to move much, but did ventured out of the bed to sit in the chair for awhile. That completely exhausted him. <br />
He has been such a brave kid. I have been surprised by how cooperative he has been. We hope to get some good rest tonight and if they can remove more of his lines tomorrow we will try to get him up walking around. <br />
The doctors and nurses say he is doing well. I know every kid is different so I am trying to let Logan do things his way. <br />
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Laying sideways</div>
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His sats hit 95 yesterday. Today they have been hanging out about 90. Can't complain. We are anxious to see what how they do when he starts exerting.</div>
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How I spent the night</div>
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Trying to blow bubbles to get his lungs expanding</div>
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Hiding from the lights</div>
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Sitting in the chair, he fell asleep before he could play the ipad!</div>
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Brad keeping up on work.</div>
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Thank you everyone for EVERYTHING. We feel so much support and love from so many people. </div>
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Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-600073233035116907.post-281048326310016292013-12-16T13:10:00.001-08:002013-12-16T13:10:27.486-08:00Surgery is doneMet with the surgeon and everything went well. We are back with Logan. He is still heavily sedated and hasn't opened his eyes yet, but he looks pretty good. He is still really cold so they have a blanket blowing air on him to try and warm his body up (they drop his body temp. extremely low to be on bypass).<br />
His oxygen saturations are at 95 right now. We haven't seen them that high in....well in his whole life!<br />
On the road to recovery. <br />
Hard to believe we are here on the other side now. I feel like I have spent every ounce of energy I have had keeping him healthy for this day. <br />
We made it. <br />
We made it.<br />
<br />Unknownnoreply@blogger.com7tag:blogger.com,1999:blog-600073233035116907.post-18997130053079985782013-12-16T11:26:00.000-08:002013-12-16T11:47:35.925-08:00First updateLogan is in the OR still. We just got the first update from his nurse that everything is going perfect. There were no complications with anesthesia. He is on bypass and the doctor didn't have any trouble opening him up. She updates us every hour.<br />
Brad and I are calm. We feel really confident in the care he is getting, and we know everybody's prayers are with us.<br />
Logan was a lot of fun this morning. He had a really hard time going to sleep last night, he could probably sense something big was happening today. So this morning when he woke up and saw we were dressed and ready to go he asked where we were going. I told him today day was the day the doctor was going to fix his heart. He cried and said he didn't want to go to the hospital. So he asked for his blanket and binky and I think his plan was to hide under those. We got to the hospital and they were ready for him. They had a bin of toys waiting with a big Tow Mater, cars, batman stuff and doctor toys. He jumped right on the bed and starting playing. He forgot to get nervous. He let them do everything they needed with very little resistance. He did everything to me that they did to him with his doctor kit, and sang like a wild man. Child life came and helped us talk to him about what he would see on his body when he woke up. They had a doll with all the tubes, wires, and iv's that he will have. He was not okay with the drain tube, he really doesn't want that. I hope he doesn't try to pull it out himself. <br />
They will keep him fairly sedated today, and by tonight if he can tolerate it they will try to get him up and walking. The sooner he gets up and moves around the better he will do.<br />
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He fell asleep in my arms and I got to snuggle him for awhile before they wheeled him off. There was no time to get emotional (I think they plan it that way). As soon as the anesthesia team came we walked him to the elevators kissed him goodbye and were taken up to meet with his surgeon.</div>
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Dr. Spray has performed this surgery hundreds of times, and he remembers Logan and what was done last time. So he will take good care of him.</div>
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Thank you again for your prayers, for your love and support. This little boy means the world to us and I pray this surgery gives him the energy and means to do whatever his little heart desires.</div>
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I will update again when I hear more.</div>
<br />Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-600073233035116907.post-34276502297089749512013-12-15T17:48:00.000-08:002013-12-15T17:48:14.721-08:00TodayToday was surprisingly a relaxing low key day. Those who know me well are probably in shock. Normally on the day before surgery I would be a nervous wreck. I do feel a sense of peace and calm today so thank you everyone for your prayers. I know those prayers are what will get us through the next couple of days.<br />
Logan dictated our entire day (how that is different from any other day, I am not sure)! When he wanted to eat we ate, when he wanted to play we played. We went for a walk before it got too cold and he watched a tractor tear down a building, he thought that was really cool. He wanted pretzels for lunch so we walked to a pretzel shop.<br />
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I haven't told him about tomorrow. I will tell him on the way to the hospital. I am amazed at how much he picks up on. When we met Dr. Rome on Friday he asked him right off if he was the doctor that was going to fix his heart. Dr. Rome laughed and said, "No, that would be my friend Dr. Spray." And then Logan didn't pay attention to him after that. So he knows he is getting his heart fixed, but not sure when. <br />
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My Aunt Jeri wrote this poem and it came with a way to generous gift from my family. But this is our prayer that as we knit our hearts together in prayer that Heavenly Father will help the heart of my little boy.<br />
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He is blowing kisses goodnight.</div>
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Goodnight </div>
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I will update tomorrow as time permits. Again thank you for your prayers and love.</div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-600073233035116907.post-36384675990323099732013-12-13T17:50:00.003-08:002013-12-13T17:50:45.049-08:00MRI<div style="text-align: center;">
Miraculously we made it to hospital by 5:30 am this morning. I hope I don't get a quiz on everything I was told today because I don't remember being this tired in a long time. Time change coupled with anxiety... sleep just wasn't happening for me last night. </div>
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Brad and Logan on the other hand slept until the last possible minute. Logan woke up asking for a drink so I was nervous it would be a hard morning, but with a little distraction (a new toy to take with us) and a binky we made it through. He immediately cries when we start leaving telling us he doesn't want to go to the doctors anymore. </div>
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Breaks my heart. </div>
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Our morning documented with pictures...</div>
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Thank you to whomever gave him this Tow Mater. It was the perfect toy for today. The toy talks every time it moves so he was saying funny things to us all morning as the stroller bumped along.</div>
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Then they just happened to have a Tow Mater Christmas pillow case for him today. </div>
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In the next few pictures you will see the progression of a drug called versed.</div>
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Here is he all nervous on my lap.</div>
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Then he got a little crazy and loopy.</div>
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And eventually relaxed enough to forget we were at a hospital and enjoy a good movie.</div>
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And then to where he didn't even need me to hold him. He was giving the anesthesiologist high fives and everything. He was cracking us up. It is never easy to kiss this little guy goodbye.</div>
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The plan was to start with an MRI and then if needed they would send him directly into the cath lab with the same anesthesia team. We waited a good 2 hours for the MRI to be completed and the images read. Once Dr. Rome got the data from the MRI he decided it was not beneficial at this time to do a cath. This was good news and not good news at the same time. Obviously we weren't excited to send him into the cath lab, but a theory on his poor exercise capacity was that maybe he had arterial collaterals that could be coiled off in the cath lab. That theory is ruled out.</div>
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He was a little upset waking up from the anesthesia, but once he got his "stuff" and mom he settled right down. </div>
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We were prepped and given instructions for surgery day on Monday. It is hard to believe it is here. After so much waiting and prepping we are really here and it is happening.</div>
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When Brad and I had to make the decision on hospitals the surgeon was definitely the main reason we came back to CHOP, but the facility was a huge part of the decision too. The after care of surgery is a <strong>BIG </strong>deal. I saw a shirt a nurse was wearing today that had a big target on the back and it said something about meeting a goal. I asked her about it. She said that is was to celebrate they have gone almost 2 years on the cardiac floor with <strong>NO</strong> hospital infections (things like staph infections and things from central lines, IV's etc.).</div>
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<strong>THAT IS HUGE</strong>.</div>
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Infection is a huge fear of mine and something I have watched way too many heart kids battle that shouldn't have to worry about things like that. I am happy we are here. We prep Logan for 3 days prior to surgery with special wipes for his body, ointment for his nose, and a mouth wash to try to have his body as clean and germ free as possible for surgery. So we have the weekend to relax and hopefully not go crazy before his big day Monday.</div>
Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-600073233035116907.post-50771438673979205622013-12-13T15:14:00.001-08:002013-12-13T15:15:07.587-08:00Pre-op 12-12<div style="text-align: center;">
Yesterday was a crazy whirlwind kind of day. Luckily Logan slept well at the hotel. We were in an unfamiliar part of town so by the time we tracked down somewhere for breakfast we were hurrying to the hospital for our pre-op appointment. Brad has been awesome at getting us everywhere we need to go in a crazy busy city. I would be a basket case if I had to drive here. When we left for the hospital the PRMH (Philly Ronald McDonald House) still didn't have a room for us so we figured we would be staying in the hotel another night so we hadn't packed up our stuff. As we got to the hospital the social worker from PRMH called and said they just had a room open up that would work for us. YEAH! The stress then was not being able to check out of the hotel by check-out time. Thankfully the hotel was so nice and let us leave our stuff in our room until we were done at the hospital which ended up being almost 5pm. They were very kind not to charge us another night. </div>
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Pre-op was long..... but good.</div>
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As we sat in the clinic waiting room I felt extremely overwhelmed. I was feeling like we were just way too far from home. Then we walked back with the nurse and encountered our first familiar face. One of our favorite nurses that took care of Logan after his last surgery is now a NP here. It was so great to see her, and she loved seeing Logan again. </div>
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Logan did great. We told them we needed to hold off on labs until we were walking out the door. Smart move. </div>
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Bribery works wonders with this kid. The promise of a new toy is like a million dollars. So he puts on his brave face and gets through whatever he needs to just to get that new toy.</div>
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Logan still continues to baffle doctors and nurses. Logan's anatomy is unique. Even for being a single ventricle, he is just one of a kind! His saturations have been great here at sea level when he is at rest. First check in clinic he was satting at 88 and the nurse kind of looked at us funny like "Why do you have him on oxygen" (88 is pretty good for a post Glenn heart kid). But then she saw him walk the short distance for his x-ray and almost pass out from the effort. She measured his saturations again and he was at 52%. His drastic drop is still a big concern and question for anyone involved in his care. </div>
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We met with Dr. Rome and talked through different scenarios and asked enough questions to drive him crazy! Then finished with a traumatizing blood draw that went better than most (thanks to new cars) and with instructions to be back at 5:30 am the next morning. YIKES.... that is early especially when you consider we are still functioning on Utah time.</div>
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We rushed back to the hotel to pack up and get to the PRMH before the volunteers left for the night. We had a very warm welcome and are so grateful for this incredible service they offer. We were able to have a warm meal cooked by volunteers and they welcomed Logan with a new toy (he was beyond thrilled and LOVES his new hotel as he calls it). </div>
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We are blessed, and Logan's spirits were lifted a little when he saw there were toys and fun things to do at our new hotel.</div>
Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-600073233035116907.post-61162617845870204732013-12-13T05:24:00.001-08:002013-12-13T05:24:56.232-08:00Travel Pictures<div class="separator" style="clear: both; text-align: center;">
Logan got to check out the cockpit as we boarded the plane in Salt Lake. Brad went ahead of us and sanitized our seats and then Logan and I waited until the end to board. Everyone was really nice and of coarse Logan didn't mind the extra attention.</div>
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He was a great little traveler. The people around us didn't have to listen to any crying, but they did hear a lot of car noises, Buzz Lightyear, and Woody voices! It is nice to have the stress of traveling over with. I had forgotten just how far away this place is from home. Unknownnoreply@blogger.com1