tag:blogger.com,1999:blog-41670260912774310682024-03-05T04:56:40.143-08:00Jack's Journey With A Special HeartChrissy Buckleyhttp://www.blogger.com/profile/01153159670291229331noreply@blogger.comBlogger37125tag:blogger.com,1999:blog-4167026091277431068.post-923892075793294902012-12-06T11:21:00.001-08:002012-12-06T11:33:00.744-08:00Following up with JackI was reading another blog today from another heart mom and started to feel guilty that I have not posted in such a long time. I do post a lot on Facebook on how jack is doing but I have been asked a lot from people how Jack is doing by people who are not on Facebook. I have even been asked if something really bad has happened to Jack and thats why there are no more blog posts. After that question, I decided maybe I should get back on the blog to let you all know how great Jack is doing these days. <br />
Since Jacks last surgery in March, he has had quite the battle with fluid in his lungs. Jack ended up back in the hospital shortly after being discharged for the dreaded Chylos Fluid that he had battled after his second surgery. We kind of expected that Jack would get this fluid again because he had it before, but this time was pretty bad. He was admitted early April with fluid in his lungs in the amount of 750mls. That is about 25 ounces of fluid (imagine of 3 cans of soda just sitting in his lungs). Basically he was drowning. They had to put a small tube into his chest to drain the fluid and he had to remain on watch for about 2 weeks at the hospital. It was a pretty scary moment going back into Childrens with a child fighting for air and turning blue right in front of my eyes. Thank goodness it was caught in time. Since then, Jack was put on a low fat diet, lasix (meds to keep fluid down), and we had to go for a weekly xray to keep an eye on any fluid. This went on all summer and into fall. Then because the fluid just wasn't getting better he had to go in for another heart catherization... that would be his 9th one. In the cath, they were able to coil off unneccesary veins that could be causing high pressures in his lungs, that would also be causing some of his fluid issue. It was a rough cath for Jack, probably the worst recovery after a cath I have seen him go through. But with in a week he was back to hiself. Just recently Jack was able to come off the meds and we have had a 3 week wait period to get another xray, which is tomorrow. We are hoping for a nice clear xray since being off the medication. It would also be so nice to nix the xrays all together. It is not an easy trip for Jack. Basically this kid has had enough. My only bribe in the hospital is the big fun animal shaped cookies they sell in the lobby that he isn't even supposed to have because of his diet! But it is pretty sad when your 2 year old knows when you are on the road leading into the hospital too... starts crying at that point until we hit the cookies! <br />
Jack seems to be doing good now! He has a lot of energy and a lot of spunk which is really nice to see. I enrolled him in a Pre-pre K class that he absolutely loves. It is a great experience for him to interact with other kids and just play like a normal little boy. Recently we had our big interview with Millbury public schools to set up an evaluation to see if we can start Jack in real Pre-K this spring. It all will depend on if he is delayed or not. If so, they will take him right when he turns three in the spring. If he is not delayed we will have to wait till fall. I have to say though, Jack is no where near delayed. Although school for him in the sprind sounds soooooo good to this mamma, I am proud of his achievements and if he has to wait until fall that is really a good thing. We were told in the beginning that for every day Jack is in the hospital would lead to one week of being delayed (he has been admitted total of 8 months of his life).NOPE- Not my Jack. Jack can count to 20, count objects, knows his alphabet, knows all his shapes and colors, and talks very well... heck, he reads license plates in the parking lots. He can use the ipad better than me! Sorry if I am bragging, but it truly is becausee I am just plain ole PROUD of who he has become with all that he has been through. <br />
Jack is going to be a big brother in February. Not really sure how this will all turn out but he seems to be ok with it now. Most of the time when I ask him what is in my belly, he refers to it as a baby... sometimes its an animal of some sort, like a horse! One day Thomas the train was in my belly. It is really amusing to hear what he comes up with. This kid has character and we love it. So hard to get mad at him with his big blue eyes and a smitten grin. He still has this mamma wrapped around that little finger but I love it! So I will keep you posted on results for tomorrows xray and try to be a lot better about getting on this blog! To those of you keeping up with Jack, I really appreciate it!!Chrissy Buckleyhttp://www.blogger.com/profile/01153159670291229331noreply@blogger.com0tag:blogger.com,1999:blog-4167026091277431068.post-68893969624626860632012-02-07T13:00:00.000-08:002012-02-07T15:33:22.798-08:00A New Year, A new JackHey all, and happy new year. We have been so busy lately and haven't had much time to focus on the blog much. So much has happened in the past few months...<br /><br />We have a "tentative" date for Jack's last of the 3 Stages of Surgeries. March 27<span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">Th</span> Jack will have the <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Fontan</span> surgery. It really is so close and I think I am in partial denial that the time has finally come. I feel weird saying this because I am not the one having surgery. But for some reason, this last surgery, although it has not happened yet, is really hitting me hard. Its not that I loved Jack any less for his prior surgeries or <span class="blsp-spelling-error" id="SPELLING_ERROR_2">catherizations</span>, I just have this true and special bond with him now. I think it is making this time much harder for me. I think having so much time away from the hospital this past year has made it feel like he is an <span class="blsp-spelling-error" id="SPELLING_ERROR_3">ok</span> healthy kid. Although I know that is really not so true. I can't believe we are this far already as it feels like just yesterday I was hearing Jacks diagnosis of having half a heart. It is really strange how time can just pass you by.<br /><br />Another big thing coming up for Jack in March, HE IS GOING TO BE 2!!! Talk about time passing. He is such a little boy now. Sometimes I catch myself looking over at him in <span class="blsp-spelling-error" id="SPELLING_ERROR_4">awwww</span> for how much he has grown. We will be doing a small family party in the beginning of March so that we can get him bubble bound to stay healthy before his surgery. For those that really thought I put him in a bubble (<span class="blsp-spelling-corrected" id="SPELLING_ERROR_5">I'm</span> not that crazy!!) I do not. I just keep him away from school aged children and people who are sick or have been around sick people. It kind of keeps my mind at ease and so that he is healthy for the big day. It does stink because Jack and I do get bored staying around the house for that long. You gotta do what you gotta do- and make the best of it!!<br /><br />So going into the new year of 2012... <span class="blsp-spelling-error" id="SPELLING_ERROR_6">ok</span> we are already past a month. <span class="blsp-spelling-corrected" id="SPELLING_ERROR_7">I'm</span> a little late with this I know. This year I have many expectations and resolutions that I have set for myself. I will not list my 16 new years resolutions, yes I have 16!!! But I have <span class="blsp-spelling-corrected" id="SPELLING_ERROR_8">definitely</span> gotten a good start on most of them. However, I will tell you one that I am truly excited about. I have signed up to walk the <span class="blsp-spelling-error" id="SPELLING_ERROR_9">NSTAR</span> <span class="blsp-spelling-corrected" id="SPELLING_ERROR_10">children's</span> walk on June 10<span class="blsp-spelling-error" id="SPELLING_ERROR_11">th</span> of this year. I am doing it for a few different reasons. First and main reason is to celebrate Jacks final surgery and how far he has come. Walking in his honor is the least I can do for him. Another reason is for <span class="blsp-spelling-corrected" id="SPELLING_ERROR_12">Children's</span> Hospital. They have given us the best gift I will ever in my life <span class="blsp-spelling-corrected" id="SPELLING_ERROR_13">receive</span>, the gift of our son. When we had first found out about Jack's surgery, it was really hard to have hope. It was hard to think good was going to come out of any of this. We didn't want a baby shower and we had a hard time celebrating our pregnancy. And now, we celebrate everyday with the beautiful gift of life we have. Children's has and will always hold a very special place in my heart. The people that work there are just absolutely wonderful in what they do. I am very excited for this walk. We already have a great team and we have already raised a good amount of money for this cause. If you would like to donate, please go to <span class="blsp-spelling-error" id="SPELLING_ERROR_14">NSTar</span> <span class="blsp-spelling-corrected" id="SPELLING_ERROR_15">children's</span> walk <span class="blsp-spelling-error" id="SPELLING_ERROR_16">boston</span> and look for team: My Heart Belongs To Jack. Or if you would like to join us in this walk, please do! The more the merrier!<br /><br /><br />I am looking forward to good things in 2012. The past year has been rough on us as a family. <span class="blsp-spelling-corrected" id="SPELLING_ERROR_17">I'm</span> starting to <span class="blsp-spelling-corrected" id="SPELLING_ERROR_18">despise</span> the saying that we are only given things that we can handle. I think I am at my personal limit really. We <span class="blsp-spelling-corrected" id="SPELLING_ERROR_19">unfortunately</span> lost our baby to be at 3 months. It was a very sad time for us and I keep telling myself there has to be a reason for it. Maybe it was timing, maybe the baby wasn't healthy or maybe my body wasn't ready to add the extra stress. Justin and I have decided to wait a little while to try again. We are going to take the time we have now to focus on Jack and get through this final surgery stage. We will be able to get to do more things with Jack and <span class="blsp-spelling-corrected" id="SPELLING_ERROR_20">enjoy</span> the beach and all the fun summer activities. Then maybe at the end of the summer we will try again.<br /><br />We leave for our family vacation this <span class="blsp-spelling-corrected" id="SPELLING_ERROR_21">Sunday</span> and we couldn't be more excited. We are going up to <span class="blsp-spelling-error" id="SPELLING_ERROR_22">Bretton</span> Woods for a few days. Justin will ski and I will sled with Jack. Not a ski person. Not really a snow person but its a trip away so I will take it. Next one will have to be some warm weather fun! Jack is going to have a blast and we could all use a time out from our daily routine! I have all my snow gear to keep me warm!<br /><br />Well a belated happy new year to everyone! Hope this year brings great things for all!!Chrissy Buckleyhttp://www.blogger.com/profile/01153159670291229331noreply@blogger.com0tag:blogger.com,1999:blog-4167026091277431068.post-39305252670810537082011-11-23T11:40:00.000-08:002011-11-23T12:22:05.500-08:00Thanks, thanks, and more thanks...<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBpZ4hPTn88m-Gl9ftPlUgwbM91gzfCXnJ03Y-RcmAJ8ByBL5hNal0hAP4IU-g5vjPNkKVPP56VPvdqi__OepgOzi9ppFcxO1qzKZlXTEM56n39K8ziwYj8mzI_ux5yMYgWU-3jtim3Qx1/s1600/jack+and+daddy.jpg"><img id="BLOGGER_PHOTO_ID_5678288934068020050" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 241px; CURSOR: hand; HEIGHT: 320px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBpZ4hPTn88m-Gl9ftPlUgwbM91gzfCXnJ03Y-RcmAJ8ByBL5hNal0hAP4IU-g5vjPNkKVPP56VPvdqi__OepgOzi9ppFcxO1qzKZlXTEM56n39K8ziwYj8mzI_ux5yMYgWU-3jtim3Qx1/s320/jack+and+daddy.jpg" border="0" /></a><br /><br />Thanksgiving is one of the biggest times of year where we sit and reflect on what we are most thankful for. I do have to say I am thankful everyday, but it only seems right to share with others my thanks on this thanksgiving day...<br /><br />First as many of you know my biggest thing I am thankful for as I share this as much as possible. Jack!!! He is the best gift I could have ever recieved. He is my everything. With all that he has taught me, you wouldn't think that he could teach me anything more, but everyday he teaches me new love, new hopes, and new dreams. He brings smiles to many people and that I adore. I can't express enough the love I have for this child because it is never ending, and its funny because I have never felt more love coming from another human being than I do with Jack. Even though he can barely talk or use full sentences... his actions say it all! I love that little boy of mine and couldn't be more thankful that we have him here with us! He is a true blessing.<br /><br /><br />One thing I am thankful for and I probably do not say it enough.. is my husband. Justin is such a hard worker and does so much to provide for this family. He works so many hours and would work more if given the opportunity. When Jack was born, we went down to one income, which was never our plan until we learned of Jacks heart defect. There was no way I could keep a job and stay at the hospital as long as we did and as often as we did. It was our goal to keep Jack healthy and keeping him out of daycare played a major role in doing so. Justin took on the position as the main provider for our family. Because of Justin, we have been able to have everything we need because of his hard work and dedication to keeping our family going. Our house, our car, food on the table, and some extras when we need it. He doesn't ask for handouts and we haven't really had to ask for help, he just works more hours if we need something. We have all these wonderful things because of his hard work. I don't think he hears it enough but I am so very proud of him and so is Jack and we are very thankful to have you in our lives!<br /><br /><br />I am also thankful to be expecting baby #2 in June!! Justin and I have always talked about having two children before we found out about Jacks heart. But after Jack was born we sort of said no way to having anymore children. I think it was mostly fear of it happening again to the next child and not wanting to go through all that Jack has gone through, again. But after having Jack home and healthy for a year... we started talking about it and decided we really wanted Jack to have a sibling. And it happened!! We are praying very hard for a healthy baby. We have a 5-10% chance of another heart defect, but we are looking at it as we have a 90% chance of a healthy baby... 90 is greater than 5-10!!! So we will find out in January when the doctors can get a good look at this babies heart!! So help us pray for healthy and if you wanted to add "girl" in there too, that would be fine by me (wink, wink)!!<br /><br /><br />So we have a lot to be thankful for, but didn't want to leave any of you out in my little list of thanks. But I can not express enough how thankful I am to have all of you who pray for our family, epecially Jack. I really think it helps in so many ways, and when we are feeling so down when Jack has his procedures or surgeries, I can really count on all the people who pray for him and us, to lift us back up again. I appreciate the time YOU take out of your lives to think about us!! Thank you, thank you, and thank you again!!!<br /><br /><p>Happy Thanksgiving!!</p>Chrissy Buckleyhttp://www.blogger.com/profile/01153159670291229331noreply@blogger.com0tag:blogger.com,1999:blog-4167026091277431068.post-25607200639125988242011-11-07T17:45:00.000-08:002011-11-07T18:31:56.441-08:00Post Cath and doing great!!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaakPvGPbGiAJsceVDbPRb4v_TTfaI8-dHk0nYIn0snHESXRzfqKmSpkLYbRqM4URJW_sbcKdTv1NCucaSJNt4bLvns2pBe3KRcnctE6PtyrB-GWiWzTv1w0ux8u8m8tqirqrDNo2tzAzf/s1600/jack+in+his+jonny+2.jpg"><img id="BLOGGER_PHOTO_ID_5672446851840659874" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 241px; CURSOR: hand; HEIGHT: 320px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaakPvGPbGiAJsceVDbPRb4v_TTfaI8-dHk0nYIn0snHESXRzfqKmSpkLYbRqM4URJW_sbcKdTv1NCucaSJNt4bLvns2pBe3KRcnctE6PtyrB-GWiWzTv1w0ux8u8m8tqirqrDNo2tzAzf/s320/jack+in+his+jonny+2.jpg" border="0" /></a><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLAfRMmn7_W34b_yqNqAXpOIsubzy9HQoqoLhuCHd9t7QvRGWMF3WW-wu2GswFJbP-qqc0oU8hP1kU1AZ1ngGEl0bW8Xl07zgaO2CrfoA6c_Or6gF4BsM0X9dJcidXeS4jccE-L1yh4bv7/s1600/jack+in+his+jonny.jpg"><img id="BLOGGER_PHOTO_ID_5672446841598444466" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 241px; CURSOR: hand; HEIGHT: 320px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLAfRMmn7_W34b_yqNqAXpOIsubzy9HQoqoLhuCHd9t7QvRGWMF3WW-wu2GswFJbP-qqc0oU8hP1kU1AZ1ngGEl0bW8Xl07zgaO2CrfoA6c_Or6gF4BsM0X9dJcidXeS4jccE-L1yh4bv7/s320/jack+in+his+jonny.jpg" border="0" /></a><br /><br /><br /><br /><div>Jack had his 6th Heart Catherization this past thursday.. Can I just tell you how weird it was to walk into Childrens Hospital for the first time in a year. It was so strange to be there, but it felt like we were back home. I absolutely love the feeling that you get from the staff at Childrens. I had such fear knowing we were going there, but then once we were there for Pre Op on wednesday, I really didn't have much fear at all. It was more like excitement. I couldn't wait for Jacks boston team to see how big Jack was and how much he has progressed in his development. Seriously, he walked the halls as if he owned the place. And I must say, he was the cutest little patient rocking his hospital gown all through the halls. Each time Jack had a test for pre op and a different nurse came in for that test, it was always a nurse that Jack had in the past and they could not get over Jack. I swear he should have given out autographs with all the attention he was getting. </div><br /><br /><div>His Cath went great. In his pre op echo cardiogram, it seemed as though there was going to be a lot of intervention to balloon his Pulmonary Artery, the Aortic Arch, and the Atrial septum. But once he was in the Cath they were able to see his anatomy better and they only needed a slight ballooning of his Atrial Septum, which we knew before even going into the hospital. So his cath only took a couple of hours and he came out of it wonderfully. The surgeon said that Jack was a great example of a perfect Glenn. Which means his anatomy from his last open heart surgery couldnt look better. Great to hear. After the cath, he was supposed to lay flat for 5 hours but by hour 4 they couldnt keep Jack down so they let him get up to walk around and play. This kid has too much energy to waste lying down. He had a very uneventful night, which is great. He was only a little restless but got a great amount of sleep. His mamma on the other hand, not so much. Daddy managed to snag a bed down the hall and got some sleep. I stayed in the room with Jack. Brenda our nurse offered to bring in a stretcher for me to sleep on but I insisted the chair bed in the room was perfectly fine. Well, in the middle of the night I woke up with my legs elevated to the ceiling and my head to the floor and decided it was not comfortable at all. I didn't want to wake Jack up witht the noise of getting a bed in the room so what did I do, I climbed in the crib with Jack. Yes, this mamma shared a crib with Jack. I do not recomend it what so ever! It was better than the chair but man I was sore in the morning. </div><br /><br /><div>In the morning, Jacks cardiologist came to check on Jack. He walked around with Jack and I, sat and just watched jack play. I swear he was going to cry. He was in complete AWWWW over Jack. At one point he paused and asked if he could take some credit for how wonderful Jack was. I said ABSOLUTELY. I nearly cried but for some reason held my tears back. It was one of the most incredible moments I have had with Jacks doctor. I honestly adore that man!!! He was definately sent to us by someone special "up there" because he knows Jack better than anyone else, and you couldn't ask for more in a doctor. </div><br /><br /><div>So we got to go home the day after the cath which was wonderful. But the saturday after the cath Jack woke up with a terrible cough that worried us. So we took Jack into his local pediatrician. Jack had a bit of swelling to his trachea from the vent so his doctor put him on steriod meds to ease the swelling of his trachea. He is doing so much better now! You would never know he just had this procedure. </div><br /><br /><div>Thank you again for all the well wishes. Our family truly appreciates it and one day Jack will be able to say the same, right now his vocabulary is a bit limited. But I know he thanks you! SO heres to an uneventful winter season as in HOSPITAL FREE and a great holiday season spent with our families! </div></div>Chrissy Buckleyhttp://www.blogger.com/profile/01153159670291229331noreply@blogger.com0tag:blogger.com,1999:blog-4167026091277431068.post-63122705800883867622011-10-13T09:26:00.000-07:002011-10-13T10:14:16.546-07:00We're Back!!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXEfee7vh4eU-GvV2Sxi6ragSCkzG0FVNKfrl9rFv_sJJmTxaTztJZE_gR7RPWhpJZkwu1agFEs5vUEW-s4hnHTVPQwvdh_-Y_zPhsOMmkUfYklcB-3aaiDyHrkEU3wwKrhAN3m3yqGW0O/s1600/jack+155.JPG"><img id="BLOGGER_PHOTO_ID_5663025751531904082" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXEfee7vh4eU-GvV2Sxi6ragSCkzG0FVNKfrl9rFv_sJJmTxaTztJZE_gR7RPWhpJZkwu1agFEs5vUEW-s4hnHTVPQwvdh_-Y_zPhsOMmkUfYklcB-3aaiDyHrkEU3wwKrhAN3m3yqGW0O/s320/jack+155.JPG" border="0" /></a><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNEr2Z5YE3j8PcGfa99Ebzygsp5GeBFkbbrlyqUqu7Sv_JWvXMm_AMRfZhG1dZQPlk-vB8jqvag7B-Ew-2oGvZXvYhx_VUZjUyr5dcqvYyCAxtMkorIH0li4gdKuJIekesnpYv7Ze08SRO/s1600/jack+177.JPG"><img id="BLOGGER_PHOTO_ID_5663025746721664114" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNEr2Z5YE3j8PcGfa99Ebzygsp5GeBFkbbrlyqUqu7Sv_JWvXMm_AMRfZhG1dZQPlk-vB8jqvag7B-Ew-2oGvZXvYhx_VUZjUyr5dcqvYyCAxtMkorIH0li4gdKuJIekesnpYv7Ze08SRO/s320/jack+177.JPG" border="0" /></a><br /><br /><br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZJTMlMbnTaeWMG1EiJLz2_zkI03zEvZphWs5Yn7dKNAJTYrHR457VQBaLsKipetX6au4bV6_q5T-OACNxK1r41IQUlg6E3tfwXeTm9LVs0WA5M2KcSpCDmtcDHZ21jYWbhcxFHnfReen-/s1600/jack+168.JPG"><img id="BLOGGER_PHOTO_ID_5663025315242437826" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZJTMlMbnTaeWMG1EiJLz2_zkI03zEvZphWs5Yn7dKNAJTYrHR457VQBaLsKipetX6au4bV6_q5T-OACNxK1r41IQUlg6E3tfwXeTm9LVs0WA5M2KcSpCDmtcDHZ21jYWbhcxFHnfReen-/s320/jack+168.JPG" border="0" /></a><br /><br /><br /><br /><br /><br /><div>Hey Everyone, I would first like to apologize for my neglect to this site! It was not intentional. When Jack was born I had been using my laptop to update his sites. On our third week in the hospital my computer bit the big one! So my mother was so nice to let us use her computer while we were there and we ended up keeping it for a while ( a good year and a half) until we were able to get a new one. Well we got the IPAD2 and as cool as it is, it is limited to the things you can do, and one of those things we were unable to do was update this blog. Then my father came through and sent me one of his extra laptops! Thank goodness for parents! I swear I don't know what I would do with out them!!!! </div><br /><br /><div>Now onto Jack, well he is now 19 months old!! I can not believe it! He is doing really well right now and doing everything a 19 month old should be doing. This mamma is exhausted trying to keep up with him all day. He is into EVERYTHING and doesn't stop to catch his breath... or mine for that matter. </div><br /><br /><div>On November 3rd our year free of hospital stays will come to an end. It has been so lovely not living the hospital life for the past year. But we knew at one point that it would come to an end. Jack is scheduled to have his 6th heart catherization on November 3rd. During this cath the doctors will be balloon dialating his atrial septum once again. This is to keep him good until his final stage surgery, which is scheduled for MARCH. We already have been told that Jack will have to stay overnight, but if I know my son and I think I do, we will be there a bit longer. If we don't stay longer and he proves me wrong well let's just say I wont be mad at him :) </div><br /><br /><div>I am nervous about this upcoming cath because of Jack's age. We just had a recent trip to the ER because Jack was dehydrated and it caused his oxygen levels to get really low. It was pretty scary. But with IV fluids and rest he was back to being himself in no time. As for the day at the hospital, can I just say OH MY GOODNESS that was H-E double hockey sticks. He did not want anything to do with anyone. No doctors, no nurses, NO ONE except for my mom and I. At one point when his cardiologist came in the room Jack shook his head no and pointed out the door, basically telling the doc to get out! Although I did think it was funny, it only gave me a glimps of what we are in for in a couple of weeks. UGGGGGH! Someone may need to sedate this mama for this next cath.</div><br /><br /><div>The pictures I have posted are of Jacks first trip apple picking. He didn't do as much picking as he did eating that day. As you can see in the pictures he is just eating apples. At one point I caught him hiding under the tree with a few apples in his lap and bites out of all of them! So cute really! But it was a fun day and I am glad we were able to get him out to the apple orchard. </div><br /><br /><div>I have a favor to ask. My mother- in laws step daughter Kristen has been admitted to MGH here in boston while she was on a visit from north carolina. During her stay here she unfortuneately came down with an infection in her heart. She has quite the medical history but this was unexpected and could require heart surgery to not only take care of the infection but also do repairs to her heart. So please keep her in your thoughts and prayers! She needs as many as she can get to get her up and healthy! Keep your head up Kristen- you are in a great place!! </div><br /><br /><div>I also wanted to say a special thank you to my mom... Since Jack was born she has been right there by mine and justins side through it all. She hasn't missed anything and We feel very lucky to have her. I feel safe knowing that she knows everything about Jack and if there were ever and instance that we would not be there, I know she would be able to handle anything when it comes to Jack. Everytime I am alone at the hospital with Jack, I can count on my mom to show up and help me. Justin can't be there all the time because he needs to work or we wont survive. And it is hard being there alone and I couldn't do it with out my mom half the time! We are sooooo very thankful. Jack loves his nana, even cries when she leaves. But you can see they are always gonna have that special bond!!! </div><br /><div></div><br /><div>So finally an update!! Now if you could alll just think positive thoughts for Jack in these next few weeks that he gets in and out of this cath with flying colors!! I know in my heart he will do great, but the extra prayers always help!!!</div></div></div>Chrissy Buckleyhttp://www.blogger.com/profile/01153159670291229331noreply@blogger.com0tag:blogger.com,1999:blog-4167026091277431068.post-78494016243792942942011-05-04T06:10:00.000-07:002011-05-24T05:28:52.933-07:00Love that little fighter of mine!!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEif3pngBGQE6rblNtvLniYOR6DwZZ3q8xD2Id5OztuEo7Gz6_TpSYpd1-sRUo34_AaAvxBDDc4tkZePxU3LQ5GS2OVhMmi-y5BWf6FAMG1Ar0-0a00_rXayPv7Sj48DDD5STE12KfTCCPSw/s1600/jack+and+his+hat.jpg"><img id="BLOGGER_PHOTO_ID_5610105522774222050" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 241px; CURSOR: hand; HEIGHT: 320px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEif3pngBGQE6rblNtvLniYOR6DwZZ3q8xD2Id5OztuEo7Gz6_TpSYpd1-sRUo34_AaAvxBDDc4tkZePxU3LQ5GS2OVhMmi-y5BWf6FAMG1Ar0-0a00_rXayPv7Sj48DDD5STE12KfTCCPSw/s320/jack+and+his+hat.jpg" border="0" /></a><br /><br /><br /><br /><br /><br /><div>Jack had a cardio appointment on May 3rd, the first one since February. It feels like it has been forever! We got some great news that healed the knotting in my stomach, well for now at least. I have been dreading the news that Jack will have to have his final surgery early. I also had a horrible feeling that they were going to send us right into boston for another heart catherization. I guess with Jack's history I get these worried feelings. But... Jack actually had a great appointment. Jack's heart function seems to be doing great and he will be a canidate for the fontan surgery, but not until he is between the age of 2-4. What a GREAT feeling! The only thing that could change this time frame is if Jack's oxygen levels start to go down. Which, still unexplainable by his doctor, his levels are pretty high for a hypoplast. He SATS ( oxygen saturation levels) at about 89-94. Which a usual hypoplast can sit inbetween 70-89 and it be ok. This news brings such ease to our family. We can now just relax for a while and work on keeping Jack as healthy as he can be. </div><br /><br /><div>Another great piece of news... Jack no longer needs to take his blood thinner Plavix. We just got word last night that all the boston doctors and his local cardiologist spoke and made the decision. Sweet!!! I have been making the joke that I am going to strap a helmet on Jack as well as some hockey gear to protect him from his falls. Every little bump made this mumma so very nervous. We had a few unexpected trips to the doctor after he hit his head to check for brain bleeding. Talk about scary. This kid is walking and practically running, so ofcourse he is gonna have a fall here and there. Because of the Plavix, he would actually bruise right away. His knees were covered in bruises and it was just from crawling. Jack's doctor wanted to take him off this med for that reason. He worried about too much blood forming a hematoma, which would hospitalize Jack. So now that Jack's heart function is doing so well, he no longer needs this med.<br />We did have one short visit to the hospital this past month. Jack got the dreaded CROUP. We aren't sure how or where. But this is a viral illness that he could have picked up anywhere. Poor kid, couldn't stop coughing and at one point I could see him struggling. I called the oncall doctor and she advised me to get Jack to the hospital right away. They gave Jack a breathing treatment as well as some steroids to ease the cough and get his breathing back to normal. We were there for quite some time because the meds that were given also increase the heart rate so they needed to monitor him. I swear, Jack was healthy all winter long, and now that we are in spring he all of a suddens gets sick and not with just a cold but CROUP. He is doing so much better now and is finally back to his normal, running around getting into everything, self.<br />What is Jack doing these days... well he is talking up a storm. He even said Jack tonight. Well it was AAACCCK! but close enough. Everytime Justin walks in the door, Jack says Hi Love. Which is really cute because thats what I say to Jack everytime he sneaks up behind me. He is going to be a chatterbox. He does not stop talking all day long and I LOVE IT! He surprises me with new things everyday. </div><br /><br /><div>Now that we know Jack is doing so well, we are going to try and plan a small family vacation. Not too far from home ofcourse. It will be nice though, Justin can finally use some vacation time on vacation and not for another hospital stay. Just to go away as a family, anywhere will do. Although I'm thinking somewhere that has a beach involved. Jack loves the tub, so I can only imagine him with a big huge one like the ocean. Oh, I can't wait!</div><br /><br /><br /><br /><div><br /><br /><br /><br /></div><br /><br /><br /><br /><p><br /><br /><br /></p>Chrissy Buckleyhttp://www.blogger.com/profile/01153159670291229331noreply@blogger.com1tag:blogger.com,1999:blog-4167026091277431068.post-32237250309093865112011-04-06T05:13:00.000-07:002011-04-06T08:31:57.391-07:00Life is good!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgRthZBSPD5FxIs6cWCqq_7D4-RfPNhhWwTxmn3jEZLRKO9CshHBXVRhlNblU2WdVu5DHmoI1yzpqG88ELUSB3V4bByxG-H7Dkq1dDsg6Wq2vhi6_qfKGpNmono59BXM_8S8uzP1vWUoyR/s1600/jack+st+patty.jpg"><img id="BLOGGER_PHOTO_ID_5592493707064302578" style="FLOAT: right; MARGIN: 0px 0px 10px 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 191px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgRthZBSPD5FxIs6cWCqq_7D4-RfPNhhWwTxmn3jEZLRKO9CshHBXVRhlNblU2WdVu5DHmoI1yzpqG88ELUSB3V4bByxG-H7Dkq1dDsg6Wq2vhi6_qfKGpNmono59BXM_8S8uzP1vWUoyR/s320/jack+st+patty.jpg" border="0" /></a> <br /><div>I recieved a call from Childrens Hospital Boston a few months back asking that Jack join a study they were doing on developmental and motor skills in children like Jack who have had numerous heart surgeries and procedures. I said yes for many reasons, but the main reason I said yes was because most children like Jack are usually 3 months behind due their surgery history, but for some reason, I never put Jack in that category. He always seems to be doing so well. This was a great visit to Childrens. It was the first time we were there and Jack wasn't having complications. We hadn't been there in 5 months.. Jacks longest break between visits. It felt good to walk in there for a good reason. The doctor leading the study was such a wonderful lady and she took to Jack right away. Ofcourse when she walked up, Jack said "hi" and showed her his truck as he made the Brrrrrrrrmmm noise for the truck (his daddy taught him that). The doctors face lit up with amazement. It was a great way to start the session. Basically the Doctor just played with Jack. She had a bunch of different toys and showed him what to do to see if he could do it too. As she did this, she had a scoring method to place Jack in his developmental level. Jack scored at 14 months in most categories!!! So instead of three months behind, he was two months ahead. Honestly, I couldn't help tears from flowing. But they were very happy tears, I promise! I am just sooo proud of Jack and who he has become already. The doctor was very impressed and said it was so nice to have a child like this on the higher end of the spectrum. She also said to watch out, we are gonna have a talker on our hands. Thats great, I will just buy some ear muffs for when I need some quiet time, Im just kidding, maybe!! To end the session, Jack put us all in shock. This wasn't even a part of the test. There was a small set of stairs in the room. It was just three stairs, Im pretty sure to practice with children. Jack never in his life has been on stairs. Jack climbed right up the three stairs. No fear at all, just went right up them like he has been doing it for years! So impressive because we don't have any stairs at our house. Im sort of saying thank goodness for that because that would be a fun game for him all day, not so much for me. It really was so great to see though. I am so glad Jack is doing so well with all of this. He doesn't seem to let anything stop him. He is into everything and I love it! My house is destroyed by the end of the day, but I wouldn't have it any other way! Between the trail of toys from one room to the next and the tupperware all over the kitchen floor, I can't help but love the mess. He learns knew things everyday. He picks up on things very easily. His Nana is very great about teaching him new things too. She gets right down on the floor and plays with him. I swear when she walks in the door for a visit, he literally wants to jump out of my arms because his play date Nana is here. He knows its time to Rock and Roll and get to play time business. It so cute! I know I don't post all of the time, but I set this page up mostly to give you updates on Jack's surgeries and doctor appointment updates. I realize, as much as I am not on here blogging away... its only because we really are living a normal life. I love that I don't have a lot of updates because things are actually going really well. I am one busy mamma because Jack gets ALL of my attention. We are looking forward to a great spring and summer, with lots to do. We are planning some trips away with friends and Jack and I will definately be spending a lot of time at the beach. What can I say, Life is Good!!</div>Chrissy Buckleyhttp://www.blogger.com/profile/01153159670291229331noreply@blogger.com0tag:blogger.com,1999:blog-4167026091277431068.post-86845557100913593032011-03-23T08:35:00.000-07:002011-03-23T09:03:37.449-07:00Jack is ONE!!!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmHyX-MHO-JSHmGbp_RPWQZxoWp8HjAk6jgD2Z99C-6XU1sy2mNlxe_j_l2EWry9cZUZ2lXc8Jkb64pBzQjiiF_-jPhd4tW6qRFLb0faKh9SxYfndYiPxZ3Uu6FVfpVpmAJaSo3H6EIFse/s1600/jack+180.JPG"><img id="BLOGGER_PHOTO_ID_5587306682369952146" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 240px; CURSOR: hand; HEIGHT: 320px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmHyX-MHO-JSHmGbp_RPWQZxoWp8HjAk6jgD2Z99C-6XU1sy2mNlxe_j_l2EWry9cZUZ2lXc8Jkb64pBzQjiiF_-jPhd4tW6qRFLb0faKh9SxYfndYiPxZ3Uu6FVfpVpmAJaSo3H6EIFse/s320/jack+180.JPG" border="0" /></a><br /><div>Jack turned one on March 12th!! We had a wonderful day celebrating this HUGE moment in Jack's life. I know turning one is a big deal for any parent. But for us, this day couldn't have been a bigger deal. As all of you know, Jack has overcome so much this past year. Between two major heart surgeries and 5 heart catherizations, our little man has shown us what life is truly about. Through all the things he has shown us in this past year, I think the true meaning of love stands out the most. I never would have imagined having these feelings that I do now. Everything Jack does brings a tear of joy to my eye. Sometimes it makes me a sobby mess, but in a good way. I have said it before but I don't think I will ever stop saying it, this boy AMAZES me! </div><br /><div>Since Jack has turned one, he has picked up some funny habbits. I guess when you are one, you no longer have to wear socks. I chase Jack around the house trying to put his socks back on but once I turn around, he takes them off again. I think he gets that from me, as I am not a big fan of socks either. Another new thing, a dirty look, when he doesn't like something you will know. It is really cute though, he squints his eyes and makes a pout with his lips. Also, no one can pass Jack without him saying "hi".. and he will say it until you say it back. We were in Target the other day and he said hi to a lady about ten times waving both hands until she noticed him and finally said it back, he laughed as if it were a game and he won. </div><br /><div>Jack is also a dancing machine. He loves music and loves to dance. Anytime he hears music he will stop what he is doing and push his toys out of the way to make room to dance. I think he gets that from his daddy, for those of you who know Justin, you can't get him off the dance floor at a wedding because he loves to dance. </div><br /><div>Jack is such a happy and loving little boy. He smiles at everyone and loves all the attention he can get. He is a busy little boy, as you can see my post is late, he keeps me on my toes. I am one tired mama at the end of the day. I love it though. Nothing could make me happier. Many moms say they need to get away or have a break. I honestly leave for a half hour and can't wait to get back to my little man. </div><br /><div>Justin and I want to thank everyone for the HUGE amount of support and love we have received in this past year. It really has been such a blessing to have all of you in our lives, even the ones we barely know but still share your prayers for our family. Jack is going to have another big year. Many more milestones to reach, I think walking is in the VERY near future... But he may also have his 3rd surgery sooner than we thought. Usually its at 2 years old but Jack case is a little different and he may need other things in his heart fixed to function properly and this will bring his surgery sooner. Maybe between 16 to 18 months. It really isn't too far away really. So please keep sending your positive thoughts and prayers, I am a true believer that they are a big help in getting Jack, Justin, and I through it all. </div><br /><div></div><br /><div>Happy 1st birthday Jack, you mean so much to so many people, and have changed the lives of many... Keep up the fight! Love Mamma and daddy!!!</div>Chrissy Buckleyhttp://www.blogger.com/profile/01153159670291229331noreply@blogger.com1tag:blogger.com,1999:blog-4167026091277431068.post-38796278538625547482011-02-04T07:06:00.000-08:002011-02-04T07:44:37.850-08:00Update...Update...Update!!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipkKLFc9Wd4w1cmgGEs-tq21Ow7Fe90KQuveSxkc0KPIzyVLncEIKXGonqCBQsmSla_p7Y06cxZJc4UEKPsMz9W2OjklnqO0Pz2DZiPyTtpFk6NNjg0RO-v9hKHs6AjogpM5aZLioyWbTM/s1600/jack+pics+051.JPG"><img id="BLOGGER_PHOTO_ID_5569860072599031746" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipkKLFc9Wd4w1cmgGEs-tq21Ow7Fe90KQuveSxkc0KPIzyVLncEIKXGonqCBQsmSla_p7Y06cxZJc4UEKPsMz9W2OjklnqO0Pz2DZiPyTtpFk6NNjg0RO-v9hKHs6AjogpM5aZLioyWbTM/s320/jack+pics+051.JPG" border="0" /></a><br /><div>So Jack had a cardio appointment yesterday and it went so well! His levels were where they needed to be and his EKG looked great! The doctor said he doesn't need to see him for another 3 Months!! 3 Months!!! Oh my thats a long time. He went from having weekley appointments to having appointments every two weeks, then monthly, and now... he won't go in for another 3 Months! It's scary and great at the same time. I can't believe he has made it to this point already. What will we do with all our time? The doctor said that he hopes we take this time to get out and about, ofcourse if the snow will ever stop. So come spring Jack and I are gonna get out of this stinkin house and start to enjoy all the great things that we can be doing. We are gonna remain "safe" until RSV (Respiratory Syncytial Virus) season is over which is until the end of March, but after that, look out world here we come! </div><br /><div>In the next appointment, in 3 months( i sort of like saying that), we will probably get a better idea on how long we will wait for his next surgery. Timeline is showing it will most likely be before he is two. More like 18 months. With his Atrial Septum issues, the stent they put in to widen the septum will stay the same size, but because he is growing, his body will grow around that stent and that could cause some problems. So that is why they will do the surgery sooner rather than later.. But in the surgery, they will be able to remove the stent and fix the problem so there will be no more worries about the Atrial Septum. I can't believe Jack is one step (one surgery) closer to being more like a regular baby! He still ofcourse won't be able to do all that other kids do, but he will be pretty close.</div><br /><div>Jack's doctor also said that he doesn't feel it is necessary to have an at home nurse anymore! WHAT!! But we like her coming!! She really only comes to do weight checks now and was going to stop coming once Jack hit 20 pounds anyways, but we really like her coming. I guess it is time for us to say our goodbyes to Nurse Jen! We will miss you Jen and we thank you for all that you have done for Jack. You have always been right on when you thought something wasn't right with Jack and you were always easy to talk to when I needed some advice! Thank you thank you thank you! We were very lucky to have you! </div><br /><div>So I guess we are on the road to being "normal"! It feels pretty good! I have been breathing a lot easier and have been a lot less fearful. Although I don't think the fear will ever fully go away, it is definately leaving more space for enjoyment and happiness! </div><br /><div>Leaving with one last thing:</div><br /><div><strong>February 7th through the 14th is National CHD (congenital heart defect) Awareness week! Please wear red in support of Jack and all his little buddies who fight this battle everyday and for all the babies and children who have earned their angel wings from losing their battle with CHD's. </strong></div><div><strong></strong> </div><div><strong>Thank you!! and Jack thanks you for all of your support!!</strong></div><br /><div></div><br /><div></div>Chrissy Buckleyhttp://www.blogger.com/profile/01153159670291229331noreply@blogger.com0tag:blogger.com,1999:blog-4167026091277431068.post-77804692715158572742011-01-31T07:08:00.000-08:002011-01-31T07:35:16.674-08:00Jack is on the go!!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk9oE7VHo35aFGwCnzOD64hzVTCUZCjD8IXKhW2HrU-LTDyOMqZoW1hApOaAujIJGItBSoGLaj9nFtw26i986BRCBnOi25Ygy_uBnYzBlyzlXQhwdCaKkPiPxNAHeQEtTgt7-ToOCnWD7u/s1600/DSC_1070.JPG"><img id="BLOGGER_PHOTO_ID_5568373396875221330" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 213px; CURSOR: hand; HEIGHT: 320px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk9oE7VHo35aFGwCnzOD64hzVTCUZCjD8IXKhW2HrU-LTDyOMqZoW1hApOaAujIJGItBSoGLaj9nFtw26i986BRCBnOi25Ygy_uBnYzBlyzlXQhwdCaKkPiPxNAHeQEtTgt7-ToOCnWD7u/s320/DSC_1070.JPG" border="0" /></a><br /><div>Jack is fully crawling now! I can't believe it! He pulls himself up and is getting into EVERYTHING! He plays catch with his ball, waves hi and bye, and rolls his trucks across the floor. It really amazes me only because with Jack's condition, he is supposed to be behind in his motorskills, but he is right on. Childrens Hospital called and asked that I bring him in to check on his motor development due to the fact that they are supposed to be behind. This is a study on children who have had Heart surgeries to see how far they have come in development. They want to play with him for a few hours to see how he does and then give feed back to what can be done to help him get further. I told the coordinator how well he was doing and she said it would be great to have him in the study to show that some of these babies can succeed in reaching motorskill goals in his age group. It makes me proud that my son is one of the babies that are doing so well. </div><br /><div>I am waiting to hear back from Jack's pediatrician to do a test on milk alergies. Jack since he had started formula, has had a Milk protein alergy. Usually babies outgrow this alergy and can start milk by age 1. The peditrician said to start introducing dairy to him now so that we can transition him to milk at age 1. Since Christmas he has been having yogurt and cheeses as well as mashed potatoes and other dairy products. Well, since we have started those, Jack has had congestion along with eczema and really messy diapers. His congestion got so bad we ended up bringing him into the hospital because his oxygen levels were dropping. He had a full check on his heart, and for once, it was not his heart! Thank goodness for that!... So we left the hospital with the doctors saying its a "virus" and he will get over it. I started putting timelines together on when he has changed things like, diet, sleep, congestion, and his ezcema. It all started with him eating dairy. And as we all know, you aren't supposed to believe everything on the internet...but I googled milk alergy in babies and all the symptoms shown were exactly what Jack had. So I stopped the milk and about two days later all the symptoms went away. Congestion and all.. So I have asked that on Jacks next weight check visit, we re-test him for milk alergy. Hopefully if that is the case we can still find foods for Jack to eat that will still beef him up. He may just have to be the meat and potatoes kind of kid! But thats ok... what ever it takes!!</div><br /><div>In 6 weeks, Jack is going to be 1!!!! I can not believe it!! What a very exciting time in our lives! Jack reaching 1-is a huge milestone! I swear he is gonna be walking by then!! And... Justin is finally letting me take him for a haircut! His first little boy hair cut! I will definately post pictures when that time comes!!!! My little guy is growing up! </div>Chrissy Buckleyhttp://www.blogger.com/profile/01153159670291229331noreply@blogger.com0tag:blogger.com,1999:blog-4167026091277431068.post-68173025748655922682011-01-11T17:51:00.000-08:002011-01-11T18:38:29.102-08:00Happy 10 Months Jack, and happy new year to everyone!!Jack is 10 Months, I honestly can't believe how fast time is flying by! Not only that, I am really knocking hard on wood as I say this, but this is the longest Jack has gone with out having an unexpected hospital stay. Or any kind of hospital stay at all... It feels so good knowing we have been home for this long and Jack is doing great! He is crawling around, running me over in his walker, and babbling up a storm, and he has 3 teeth! Oh and He LOVES to Dance! <br /> Jack decided that he no longer likes babyfood. Who can blame him, that stuff is pretty blah!! So he has been eating real food. He LOVES grilled cheeses and cherios. He eats chicken, mashed potatoes, peas and carrots,waffles, and pancakes. And anything that needs to be spoon fed, he insists on doing it himself, honestly we have to wait to give him a bath until after dinner because he is covered by the time dinner is over. But, I like that he is persistant on doing it himself. It fits his personality and I love his drive to do things on his own. <br /> We have to go back to the pediatrician in a few weeks to check his weight. He has been in the 1 percentile in the weight category for quite some time now. You would never know it if you saw his cheeks!! Hopefully all this real food will beef him up in no time and we can get him from 16 and 1/2 to 20 pounds by his first birthday, which is in 2 MONTHS!! My goodness I can't believe it! Although, I am sort of resistant of him reaching the 20 pound mark... at that point we will no longer have his home visits from his nurse. I like the nurse coming once a week. She is sooo good with Jack and she definately knows her stuff. I think its just the reassurance that Jack is doing ok and we have weekly visits to tell us so. At the same time, its a good thing because it means jack is doing so well, he doesnt need a nurse anymore! <br /> We also go back to the cardiologist in a few weeks (now doing monthly visits) to check on Jacks blood clot and heart functioning. I have this feeling as though the blood clot has left his leg. I do not see any discoloration of his leg anymore, so I am praying the doctors were right that it was old and will go away on its own. I like not having these weekly visits to the cardio doc, its nice to not have the hospital be the only place we really get to visit. Again, I miss the reassurance of Jack being checked out weekly. But it just means he is doing so great and I wouldn't want it any other way! <br /> Glad to be saying goodbye to 2010. It has definately been the most crazy and eventful year of my life so far. I have learned a whole bunch of things about myself and I have definately done most of my life changing in this past year! Having Jack as a part of my life (actually he is attached to my hip, no joke!) has honestly given me light on who I am really supposed to be. Everything I do now, revolves around decisions that can only better our lives and ofcourse what is best for Jack. I have had to make some pretty hard choices this past year and being a mom to a child with a heart defect was the first of the hard choices I made. I can say though, I have no regrets what so ever. Jack has brought so much to my life. He has brought so much love, strength, gratitude, and knowledge into my world. In ways I have never felt before. I have also met a lot of really great people because of Jack. I am not the only heart mumma out there... there are quite a few that are going through the same things as we are and its so nice to be able to share and compare with other moms. Helps you feel not so alone..<br /> I love watching Jack grow and change. I was going through my pictures of Jack and to see from when he was born till now, what a difference. He is adorable and funny. His personality just makes you want to eat him up! I love how much he loves his mumma, and how much he adores his daddy. He crawls over to the door and says "DA" and it is the cutest thing. I never knew being a mom could be so rewarding!<br /> So Cheers to 2011!!! Let this new year bring great new things, great health, and no unexpected woes! Oh and some more money would be nice too, hehe! I am looking forward to a great year! Happy New year everyone!!!Chrissy Buckleyhttp://www.blogger.com/profile/01153159670291229331noreply@blogger.com2tag:blogger.com,1999:blog-4167026091277431068.post-16479515780355511032010-12-13T17:22:00.000-08:002010-12-13T17:46:59.755-08:00Happy 9 Months Jack!!Jack is 9 months old! I really can't believe how time flies! He is getting so big and moving all around. I feel crawling coming on real soon! He talks all day and is starting to eat table foods! I look back at his pictures from day one and it is such a big difference from then to today! <br />Jack has finally been taken off his Lasix. Its sort of weird and scary at the same time, only because Jack has been on this med since his first surgery on 3/17/10. He was supposed to be off of it after his last surgery on 7/16/10 but with his complications needed to remain on the lasix. After his first day off the med, I was changing his diaper and noticed his right leg looked a little purple and was also swelling. So I called the oncall doctor who was on that evening. She seemed to think maybe he was holding a little fluid and to give him a dose of the lasix to see what would happen. Its weird though, talking to a doctor that does not know Jacks history. I did however give <br />him the lasix and the swelling went down just a bit. It did come back the following day, so since it was the weekend, I decided to give Childrens hospital a call. They did know jack much better. But They did not think the lasix was the cause but didnt really know why his leg would be swelling and turning purple. I took it upon myself to give Jack another dose of the lasix since it did help it a little bit. Then that monday I called his pedi cardiologist to explain what was going on, also we were lucky to have a nurse visit the same day and she called the doctor too because she didn't like what she was seeing. <br />His doctor had him come in right away for an ultrasound on his leg, just to see if there was something causing the leg to react this way. His doctor was pretty sure it wasn't because he came off the lasix. Well to our surprise, they found a blood clot in his leg. It was an acute clot and was old. It was most likely from his last catherization. The lasix was helping reduce the fluid build up in the leg so we never knew this clot was there. The doctor then called me and gave me two options: one, I give him two SHOTS a day for 2 months of Heparin (blood thinner) or he has another catherization but on his leg to balloon the clot. Neither sounded good to me but I left it up to the docs to figure what was best for Jack. He called Jacks boston docs and they all decided to hold off on anything to see if it just goes away. Too many blood thinners (he is already on one PLAVIX) could damage his intestines, and since this was an old clot, it may go away on its own. So we will be having weekly appts to check on his leg as well as the function of his heart to make sure Jack stays stable. My immediate fear was stroke!! You always hear blood clots lead to stroke, but that is only if it breaks off and moves to the brain. In his case it would move to the heart first, which is also pretty bad. If it clots the heart, it will take room away from his heart to pump. Honestly, I don't look at this as good either way. But if the doctors aren't overly concerned, then I feel I have to trust their judgement. And since it was a group decision, two heads are better than one, so I guess 4 or 5 must be a lot better. My anxiety is pretty high though, and I worry every day. As if I didn't enough before, right? <br />So we are just praying this goes away on its own and no special treatment is needed, as much as I would like to nip in the bud and get rid of it. I don't want to put Jack in any more risk than he is. I am hoping he will stay healthy through this holiday and have a nice long break from any unexpected hospital stays! <br />I will try to keep posting on his blood clot and health. If I dont get on here till after the holidays, then I would like to wish everyone a happy and healthy holiday season!Chrissy Buckleyhttp://www.blogger.com/profile/01153159670291229331noreply@blogger.com1tag:blogger.com,1999:blog-4167026091277431068.post-4187059526384861962010-11-18T11:43:00.000-08:002010-11-18T12:03:57.837-08:00Jacks follow up appt today!!What a great day.. Going into these cardio appointments can really do a number on you. I was telling a friend today that I have a love/hate relationship with these appointments. I love going only to find out what I can't see at home. But I hate going because there is always that worry deep in the pit of my stomach that we will hear something bad. But today... I had a pep talk with Jack before our appt. I told him only good things no funny business today. I think our little talk worked.<br />Jack's doctor said that he looks amazing! That word AMAZING is the best thing I have heard in 8 months. Although I already know Jack is AMAZING, its nice to hear that he is healthy in an amazing way as well. <br />Jack only had an xray today and we are waiting on the results from his doctor to see if it is time to reduce meds. The meds (diuretics) he is on have the risk of stripping his potassium because of the high dose. So it is important to really watch him and to make sure he really needs these meds. Well, if all goes well with the xray, he will be cut down to half doses, and in two weeks, he will FINALLY be off the diuretics all together. Which is huge, he was supposed to be off them after his last surgery but with all the complications, he needed them to stay stable. He will be on his two blood thinners until his final surgery and then after that, he should not have any meds.. I don't know what I will do with myself with the extra time from drawing meds and crushing pills. Im just kidding, it really doesnt take that much time, but it does make me worry when jack spits them out. Knowing he doesn't have to take them will lessen that worry. <br />Jack is almost 16 Pounds, so he is finally catching up. I think being back on his normal formula has really helped. Also, his reflux seems to be disappearing and that is another great thing!<br />So all together, it has been a GREAT DAY! Now to get ready for the holidays.. I can't wait to cook my first turkey and I can not wait to decorate for christmas! I have all my decorations out and ready to go. I want these holidays for Jack to be nothing but wonderful!! There are so many things I am thankful for, but my husband and my son make me the most thankful! I feel truly blessed to have all that I do.<br />HAPPY THANKSGIVING, hope you all have wonderful days and get really full bellies!!Chrissy Buckleyhttp://www.blogger.com/profile/01153159670291229331noreply@blogger.com0tag:blogger.com,1999:blog-4167026091277431068.post-41742405102482758412010-11-09T19:03:00.000-08:002010-11-09T19:47:22.791-08:00A year ago this week...I can't believe that one year ago we heard the devistating news that Jack would be born with only half a heart. I can't believe we have made it this far. I was reading another "heart mom's" post today and it was her 100th blog post about her daughter and her fight with HLHS. It made me realize a few things, one being, I am a major slacker when it comes to updating this post. But also, it has been one heck of a year and I am so glad we chose to fight for Jack rather than taking the other road.. which is now the road less traveled by most. There were so many things that my heart mom friend mentioned in her 100th post that I can truly relate to. Not just the heart things but the mom things too. <br />Jack has been the greatest gift I could ever recieve. I enjoy every moment I have with him, even if its sitting in a hospital room for days and days, its time spent with the most wonderful thing that has come into my life. His SMILE, his belly LAUGHS, his CURIOUSITY, his STRENGTH, his FIGHT, and His HAIR (had to throw that in there) bring me so much happiness everyday. <br />I can tell you that our lives have changed so much. A lot in which it has taken time to get used to, and a lot in which we didn't want to change but knew we had to in order to make this work. We are trying to manage now with one income, one car, living at hospitals for weeks at a time, spending time apart because we (jack and I) have to be at the hospital and justin NEEDS to work. It hasn't been easy. But I wouldn't change it for the world. If this is what we have to do, then we will do it. We will completely simplify our life to where we need to be a little less than comfortable and if it is giving up the bigger and better things for now, then it has to be done! I just keep telling myself everythings gonna be alright. I always think of that song by Bob Marley, Three Birds. "Everythings gonna be alright"... It just has to be! <br />This has been a complete test of my strength. I always thought I was independant and strong. But not until this life change, I realized I really am strong. I have learned so much from this experience. Heck, the doctor asked me if I wanted a job because I read the echo before he was able to open his mouth and I read the xray with the tech and said "I see fluid" and when the doctor came into the room he said he hadn't seen it yet and I told him what was there. I was right! I never would have thought that I would have meds and doses in my head and know what Jack should be on based on his weight. I have learned to question doctors, yes they are experienced, but sometimes a mom just knows her child more. And sometimes me knowing him more actually gives doctors the answers they are looking for. I told a doctor my remedy for getting Jack to eat and he was amazed, like why didnt we think of that amazed. Although I never wish this on another, in a way it feels as though I was meant to be a heart mom!! <br />NOW FOR JACKS UPDATE:<br />He is doing great. His levels have been great and he is happier than ever. As some of you know we had Jack's christening a few weeks back, what a great day that turned out to be. But.. we ended up in the hospital ER the next day because Jack woke me up early in the morning with very heavy breathing. I brought him in to the hospital to make sure he was ok. His doctor came right in to meet us at the hospital and after xrays, ultra sounds and monitoring, we were sent back to childrens. The last cath that jack had did not last as long as we had hoped. With what the doctor said, we were going to have a cath and if the problem couldnt be fixed there, an unplanned surgery would happen. After the cath and another few days of monitoring, the doctors beleive that Jack would not need this unplanned surgery. Sweet Releif!! We are in hopes that this will be it until the next planned cath which should be right before his surgery at 2 years old. It would be nice to have a clean break from hospitals for a while. He is doing great now though. Rolling all over the place, talking up a storm, and still fighting.. His early intervention puts him at 10 months and being only 8months old (this week) thats great to hear. She said she was amazed at his mobility after being on bypass twice. It usually slows down the brain. We are thinking maybe it did the opposite ;)<br /><br />Well if this wasnt the longest post ever!! Im off to bed. Still havent gotten the sleeping through the night thing down yet! Soon I hope but its ok, I like snuggling him as much as I can, so if its at 2am- so be it! Good night all!Chrissy Buckleyhttp://www.blogger.com/profile/01153159670291229331noreply@blogger.com1tag:blogger.com,1999:blog-4167026091277431068.post-85699776697012950362010-10-14T17:06:00.000-07:002010-10-18T06:07:00.119-07:00Two weeks post cathJack is doing really well. We are so happy the doctors were able to find and fix the problem with his Atrial Septum. He is a completely different boy now. His breathing is so much better and his oxygen levels have been staying in the high 80's where they are supposed to be. Jack will have another cath in about 6 weeks. The goal is to prevent the Atrial Septum from closing again so they will keep ballooning until they can go in and remove it during the last surgery, which will be bumped up as well. Not sure when. So he should maybe have about 3 or more caths until then.<br />Halloween is coming up and Jack has 3 costumes.. We need more halloweens!! He is going to be a Giraffe (pictures posted on this site), a lobster, and a skeleton. It is so much fun to dress him up! He doesn't seem to mind it either, at least I don't think so- hehe! <br />Jack is doing so great in his developmental stages as well. He is talking up a storm and its funny now because you can see him trying to use his tongue. He also waves hello and dances to the mickey mouse HOT DOG song. It is sooo very cute. I just can't believe how fast he has grown. He FINALLY hit 15 pounds! He has been on the verge of 15 for the past month but with all that was going on, he was unable to gain the weight. Soon he will be off the special formula and back on his normal formula so we should se him gain a little faster. He is also eating fruits and veggies. Taking it slowly though. But he loves it and can't seem to get enough of it.<br />He is also down from 7 Meds twice a day to only 4 meds with lower doses!!! Big change and it must be so much easier on his little belly. I couldnt imagine taking that many meds...ick!! Soon he will only be on 2, both blood thinners to reduce the clotting in his heart. He should be off those after the last surgery.. He's getting there.<br />Now we just have to work on sleeping through the night. I think the hospital stays have sort of steered us away from any schedules. So that is something we are working on. Mamma needs her sleep. But I actually dont mind so much waking up to feed him. He loves to cuddle after that midnight bottle and its really nice to just hold him while he is so content. But someday (maybe soon!) he will sleep through the night.Chrissy Buckleyhttp://www.blogger.com/profile/01153159670291229331noreply@blogger.com0tag:blogger.com,1999:blog-4167026091277431068.post-64042562964236379752010-09-30T10:10:00.000-07:002010-09-30T10:25:38.473-07:00Another day another Cath!..I haven't updated in a while only because it felt great to have a break from the "heart stuff" for a while. We were kind of going on with our day to day stuff as though nothing was wrong with Jack. Well a few weeks back, we received a call from Jack's heart doc and when he said do you have a minute, I knew something was up. He went on and told us that Jack's atrial septum has been growing back which has stopped the amount of blood flow that needs to go through that chamber from being a good amount to a not so great amount. With this, he would need another catherization. We knew he would be going back in 6 months anyways to re-dialte the pulmonary arteries but we didn't know this would be coming up as well. <br />So... yesterday Jack had another catherization. In this cath, they actually gave him a great tune up. They dialated the pulmonary arteries, coiled pulmonary veins, and put a stint in to keep the atrial septum open. It was a rough day for Jack. Although he did great in the cath, He was in a lot of pain afterwards. Lets just say neither of us got any sleep last night. The nurses were so kind to come and take turns consoling him. My poor little guy. This morning when he woke up from his two hour cat nap he seemed to be in much better spirits. His doctor and I went over what the next steps are and went over the additional meds he will be on. He is now on 7. Jack will have to have another cath in the near future to redialate everything that was done yesterday and if it doesnt work, another unplanned surgery will take place. So we are in hopes that the next cath will do the trick. Jack's doctor kept saying that Jack is a strong little boy, sort of like he was in amazement with how Jack has handled all of this. He felt bad for all the we have all been through, and I had to say to him, its not really me and justin going through this as it is Jack going through it. We are just his cheerleaders.. He amazes me! So Truly amazing my son is. <br />We are home now, relaxing. I think Jack is starting to get to that age where he knows something is going on when we go to the hospital. You can see it in his eyes. Only tells us that it will get worse and worse as he gets older. I wish this wasn't happening, but without all the wonderful people taking care of Jack, he wouldn't be here. So I have to leave my trust and hope with these doctors that they are doing what is right for our son. I believe they are. His doctor in boston is one of the most caring and wonderful people that I have gotten a chance to get to know. I know and can tell how much he cares for my son and it makes this situation so much better. I don't want to head back to childrens anytime soon, but if we have to I know its the best place to be!!Chrissy Buckleyhttp://www.blogger.com/profile/01153159670291229331noreply@blogger.com1tag:blogger.com,1999:blog-4167026091277431068.post-80270949739807801862010-08-26T21:12:00.001-07:002010-08-26T21:32:01.612-07:00Follow Up appointment with CardiologistJack had a visit with his worcester cardiologist today. It was a long appointment including an echocardiogram and an xray for Jack. The echo looked good and we are still awaiting the results to his xray. Hoping the fluid keeps getting smaller in his lungs. Jack's doctor and I had a long talk about Jack's not so distant future. Jack will definately be going back to childrens again a lot sooner than we thought. He will have to go back in 6 months to a year for another heart catherization. When they last did this procedure, they ballooned the aorta and the pulmonary artery. Well, the aorta will not have to be widened again but the pulmonary artery will have to be ballooned once again before his 3rd surgery. The pulmonary artery is different from the aorta as it acts more like a vein, and veins tend to shrink. So they need to keep it widened to make sure it functions properly. <br />Jack's doctor and I had a very extensive conversation about the upcoming winter season. All my fears have come back and we basically have to keep Jack in a bubble for another 6 months. As the doctor said, it is crucial that Jack stay healthy during this season. Holy Anxiety!! It really scares me to think that even just a common cold could put Jack back in the hospital with much more risk than just the common cold can give you. I am truly scared. <br />I just want to let the people around us know, that we would love more than anything to be able to share the joy of Jack with everyone in our little world. It breaks my heart that I can't be like any other new moms out there who get to show off their bundle of Joy. Especially with Jack being such a fighter and all that he has been through, I would love to spoil him with all the attention he deserves. But unfortunately we can't. Jack's health is more important to us than anything else we could ever imagine. I do hope that people understand. For the time being our lives have changed but thats all it is, is change. And to deal with Change you just have to except it and move on. So this is our new life and I can't lie, if it weren't for Jack I probably wouldn't enjoy it so much. If I am stuck in this house for months on end, and I have Jack with me, I am probably one of the happiest and luckiest ladies alive. One day Jack will be healthy enough to get out more, and I can't wait for that day!!Chrissy Buckleyhttp://www.blogger.com/profile/01153159670291229331noreply@blogger.com0tag:blogger.com,1999:blog-4167026091277431068.post-42848366119190403352010-08-25T12:43:00.000-07:002010-08-25T12:51:40.321-07:00Another visit to Childrens HospitalJack spent last week at Childrens hospital due to fluid returning into his lungs. We think he was taken off his special formula too soon. But after a week of meds and observation he has finally gotten back on track and the fluid is going away again. During his stay at Childrens they were also able to diagnose Jack with Reflux. He has had many symptoms of Reflux and now he is on Medication to relieve his pain and symptoms. So although it was an unexpected visit to the hospital, we did get a lot accomplished while there. Jack is eating great again and we even started putting rice cereal in his formula, and he LOVES it! We will get his weight back on track. <br />Jack is doing very well now, and he is definately happy to be home. Mee too! Soooo glad to be home again. It's nice and quiet here...Chrissy Buckleyhttp://www.blogger.com/profile/01153159670291229331noreply@blogger.com0tag:blogger.com,1999:blog-4167026091277431068.post-4830220191535788142010-08-13T05:39:00.000-07:002010-08-13T05:57:43.845-07:004 weeks post op!! Jacks now 5MONTHSJack is 4 weeks post op today and he turned 5 Months yesterday! He had a cardiologist appointment yesterday and his doctor said he looks fantastic. We are still going to have a weekly appointment to keep an eye on the fluids in his lungs and he has a leak from his heart going to his liver. So we will have another echo this week to see how that is doing. We thought we were done for a couple of years but at yesterdays appointment, Jack will need another catherization in the near future to again widen the aorta and the pulmanary artery. Those are both the things they ballooned in his catherization 3 weeks ago. As Jack grows he will need to have them widened again sort of like another "tune up".<br /> Jack is also back on regular formula. Im hoping this stuff fills him up and we go back on his sleeping through the night thing. He has been waking every 2 and a half hours to feed. Boy am I tired. It's like having a new born all over again. Don't get me wrong, I love the time I get to spend with him, but a girl needs her sleep! I am one tired Mamma! <br /> Now that Jack is on his formula I asked the doctors if it would be ok to start giving Jack cereal. They were fine with it. So we gave him his first rice cereal last night, HE LOVED IT!!!! He ate it as if he couldn't get enough of it. Its so exciting to see him do new things. He holds his bottle, grabs his toys, rolls around, talks like crazy, and so many other things. He recognized himself in the mirror and just cracks up like its the funniest thing. Last night I was bouncing him up and down and when we were done, he would look at my mom like, did you see that nana? It was sooo cute! I love this little boy. Makes me smile every day.<br /> Summer is almost over, I can't wait till the fall. This summer has been a humid one, being stuck in the house is no fun. I think and I am hoping I am right that this fall will be a good one!Chrissy Buckleyhttp://www.blogger.com/profile/01153159670291229331noreply@blogger.com0tag:blogger.com,1999:blog-4167026091277431068.post-81213212454009969562010-08-04T14:37:00.000-07:002010-08-04T14:49:55.272-07:00Home Sweet Home... such bliss!!Sorry for the late update. We got home monday night but I have been trying to get settled and get back into the swing of things. Jack is doing great. We had a visiting nurse come yesterday and he looked great. We go tomorrow for an appointment with his cardiologist at UMASS Memorial. He will have an xray and labs to see how the fluid in his lungs are doing.<br />Leaving childrens was a great thing but also very sad.. It was very cute, all the nurses were giving him kisses goodbye and Dr. Breitbart held Jack one last time. I was so sad that my camera was already in the car, because it really would have been such a great picture. But Dr. Breitbart said that he will see us in two years for his 3rd and hopefully final surgery. That felt good to hear. Hopefully all will go well with Jack and we wont have to go back to childrens until the next surgery. We are still going to be cautious with Jack. Ofcourse we will try to get out of our bubble in a few weeks after he is fully recovered from surgery. But we don't want Jack to get sick and end up back in the hospital. A common cold could be a really bad thing for Jack. It really is a scary thing but we still have to live a normal life as much as we can. <br />Justin and I are going to take Jack to the cape for labor day weekend. We haven't been on vacation since our honey moon and it will be nice to have some time as a family. Knowing that the cape isn't a far place from the hospital I know it will be a safe venture. <br />Thanks for all of your prayers. Two of our friends with sons who have HLHS will be having surgery tomorrow. Dylan will have his first of the 3 stages and Jacob will be having his Glenn just like Jack just did. So if you wouldn't mind, please share your prayers that you have been so generously giving for Jack to these two little boys. Both are fighters and both have wonderful parents that will see them through this scary time. <br />I will update after Jack's appointment, hopefully with good news that his fluid has decreased. I have been giving him four different meds twice a day and if all looks good, they will decrease the meds. Heres hoping!!Chrissy Buckleyhttp://www.blogger.com/profile/01153159670291229331noreply@blogger.com1tag:blogger.com,1999:blog-4167026091277431068.post-20074591374818397092010-08-01T19:50:00.000-07:002010-08-01T19:54:25.095-07:00Update on JackAfter the Catherization, they realized that Jack has Chilous. Its a fatty build up in his lungs. Weird though, the only thing to fix it is formula and and extra diuretic... So since the cath, Jack has been doing great. His oxygen levels have been back in the 80's and his heart rate a lot lower than it was. He seems to be Jack again.<br />We are waiting to have an xray in the morning to see if the fluid reduction has been consitant. If so we go home, if not we stay until they get it under control. But for the last few days there has not been any increase in fluid and some of the fluid has actually gone away.<br />So here's praying Jack is ok. Sorry I didn't update sooner. It has been a bit overwhelming and busy here. Now things are calming down. But keep your fingers crossed cause I know mine are that we go home tomorrow.Chrissy Buckleyhttp://www.blogger.com/profile/01153159670291229331noreply@blogger.com0tag:blogger.com,1999:blog-4167026091277431068.post-57129435862693783302010-07-28T07:11:00.000-07:002010-07-28T07:20:27.504-07:00Possible Catherization today...So this morning Jack's Doctors and Nurses met with me to come up with a plan. We went through the possible steps to figure out where the fluid in Jack's lungs is coming from and why it keeps coming back. This mornings xray showed more fluid than yesterday. First step would have been IV meds, second drainage from his lungs to see what the fluid is, and third would be a catherization to find out what the actual problem is. I really did not like solution one and two only because, neither really can completely get rid of the fluid and they are just temporary solutions. The catherization would let them go in and find out what is going on inside Jacks heart and see if there is something that needs to be fixed in order to get this fluid gone for good. Jack's doctor assured me that this problem going on is only a post op problem. Its not permanent. So that was good to hear. Also with this catherization, Jack was supposed to have one done in 6 weeks anyways so they could most likely take care of that while they are in there. <br />Hopefully they can get him in today as he is on the wait list.. they have already been preparing him to go in today! BIG PRAYERS FOR JACK!!!Chrissy Buckleyhttp://www.blogger.com/profile/01153159670291229331noreply@blogger.com0tag:blogger.com,1999:blog-4167026091277431068.post-7134808902816874532010-07-27T21:05:00.000-07:002010-07-27T21:31:40.615-07:00Scary day!Today was a scary day. Jack's oxygen levels dropped during the night to 65. He is supposed to be at 75. They managed to get his levels back up by giving his meds a little early. He has become dependent on his meds. During his morning feed, he gave me a real scare. He turned completely white with blue lips. Never have I seen him like this. The nurses came in and moved him around, tried to wake him up and it took a few minutes for him to respond. He finally gave us a one-eye opener to let us know he was ok. After this happened the nurses watched him and again gave him meds early to get his oxygen back up. I swear when Jack lost his oxygen, I lost my breath.<br />He came around with the meds but then they decided to put him on oxygen to give him that little boost. All morning he just wasn't his happy Jack self. He was groggy and didn't even crack a smile. This was clear indication that Jack is not ok, even our Nurse Practioner saw him and said he didn't look like himself. <br />The new plan was to give him a 3rd diaretic to decrease any fluid. They gave it to him at around 4 so now we wait to see the effect it has on the fluid in his lungs. The nurse did try this afternoon to take him off the oxygen but his levels shot down again. So he needs to stay on the oxygen. Talking with his doctor today, this all could be happening because of another problem and not the fluid in his lungs. His pulmonary artery may not be doing the job it is supposed to be. So if the meds don't do the job in the next day or so, the next step would be to bring Jack to the Catherization lab again to check his anatomy to see what is going on. If they find the problem there, they may be able to fix it in the cath lab. If not, another surgery may have to happen. <br />I hope and pray this isn't the solution but I would rather get the problem solved then keep playing with meds to try and fix something that can't be fixed with meds. It is all very scary and I don't want to put Jack's little body through surgery again. <br />After today, it hit me... nothing else matters to me but my son's health. I could say time and time again, are we being punished for something and that is why this is happening to Jack? But then how could I say that when Jack is the most precious gift I have ever received. He is the best thing that has ever happened to me and if all this is what it takes to get him home with me and for him to be safe then lets do it!! If I have to live at this hospital for a year, I will do it. If everything else in my life stops, that is completely fine because I get to spend my most important time with the most wonderful being ever!! I am one lucky girl. He wins me over everyday with his morning smile when he wakes up and through the day until he is cuddling on my shoulder to go to sleep. He already has me wrapped around his little finger and it certainly is a little finger. I just adore him and want nothing but for him to be ok. <br />Please keep saying prayers for Jack... father bob came in today and we said the peeing and pooping prayer. I know it sounds silly but that is one way that gets the fluids out of Jack, so it seemed appropriate! It was actually really cute. Hope it works!<br />And thank you for all of you that came to visit us these past few days! Jack and I really love the company! Its always nice to see familiar faces when you aren't in a familiar place!!(actually I could probably be a tour guide for childrens hospital at this point!!!!hehe)! But again thank you!<br /><br />Love you all, gotta go to bed now- nite!!Chrissy Buckleyhttp://www.blogger.com/profile/01153159670291229331noreply@blogger.com1tag:blogger.com,1999:blog-4167026091277431068.post-79790094334755798492010-07-25T20:17:00.000-07:002010-07-25T20:45:55.919-07:00Prayers for Baby Mia!Baby Mia, another baby with HLHS, lost her battle with HLHS today. I can not imagine what her family is going through. I pray for them and know that Mia is sending her love and strength to get them through this very hard time. Please send your prayers to Mia and her family. <br /> Everytime I read of another CHD baby losing their battle, I can't stop the tears from falling. It hits home pretty hard. I can not imagine the pain that Mia's parents are having right now and I never want to live it. Although I fear it everyday!<br /> Today, I will hug Jack a little tighter and tell him I love him a million times more. I can't imagine life without him!!! Keep fighting baby Jack, your strenght is what gets me through my day!!! I love you!!!Chrissy Buckleyhttp://www.blogger.com/profile/01153159670291229331noreply@blogger.com2tag:blogger.com,1999:blog-4167026091277431068.post-21469826046737575002010-07-25T07:51:00.000-07:002010-07-25T08:00:15.107-07:00Cross your fingers!!!So Jack is doing great in the recovery department. But he is still holding fluid in his lungs. They have tried extra meds to decrease the fluid but with that he became dry. Not in his lungs but everywhere else in his body. He had let out so much fluid that his potassium decreased so they had to stop the extra meds. With that, he seems to be stable but there is still a little fluid left. Most likely, they will send us home on his lasix meds but instead of the two doses we were doing at home before, it will now be three. Hopefully this helps because we do not want to come back here and go into the ICU to put a chest tube in to drain the fluid. We will be able to be home and just continue our follow ups with our Cardiologist at home. So say some prayers that this works out. <br /> We have been sitting here for the past few days a bit bored. Had some visitors finally and it was nice to see some familiar faces. Thank you for those who came!! The nurses here absolutely love Jack. He has a huge fan club here. We had one nurse yesterday who wasn't assigned to Jack but kept coming in to see if she could steal him to go play. It was really cute! A few of the nurses have been calling Jack, Jimmy Neutron (a cartoon Character)because they have the same hair do. It is pretty funny because I googled Jimmy Neutron to see what he looked like and he definately resembles Jack! So funny! We truly love the attention we get here but can't wait to be home. So keep your fingers crossed that tomorrow is the day!!!Chrissy Buckleyhttp://www.blogger.com/profile/01153159670291229331noreply@blogger.com0