tag:blogger.com,1999:blog-49065879192762339422024-03-05T23:18:50.320-08:00Dylan's ProgressAmandahttp://www.blogger.com/profile/12671797644897595426noreply@blogger.comBlogger27125tag:blogger.com,1999:blog-4906587919276233942.post-17040376189179506432011-01-05T21:53:00.000-08:002011-01-13T17:20:09.637-08:00Back in the hospital<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwteykrmSvR2NX4npLaKWJgDIrdDT5c1NjN3IYkzEB9korm99b5AQYsnmMOh0z6FBaV0u9tn6J7pJUmFW0l4aFEmBZO1IXbut4ABjQjraHXQMxjJ_4c5S3RvC7UnS9x1loO1iMjw_Sayg/s1600/IMG00041-20110106-1606.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwteykrmSvR2NX4npLaKWJgDIrdDT5c1NjN3IYkzEB9korm99b5AQYsnmMOh0z6FBaV0u9tn6J7pJUmFW0l4aFEmBZO1IXbut4ABjQjraHXQMxjJ_4c5S3RvC7UnS9x1loO1iMjw_Sayg/s320/IMG00041-20110106-1606.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5561844935365094194" /></a><br /><br />Well here we are again almost one year later...back in the hospital. It began on Christmas eve when Dylan began feeling sick and had a fever. The following day he still was not acting like himself and had a fever again, wouldn't stop crying, throwing up and breathing really fast and hard. We decided he needed to go to the er on Christmas evening. They took him in for an xray of his chest and did a catscan of his head to make sure his shunt was working properly. A shunt malfunction could cause all those symptoms also. They started an iv because he was really dehydrated and told us his shunt looked great and that he had pneumonia and needed to be admitted. We stayed in the hospital until monday dec 27th. That evening the dr felt like he was holding down enough food and was stable enough to be discharged. I was very concerned because he was very unhappy and fussy not to mention had a 102.6 temperature. I had been telling the drs that he seemed to be in a lot of pain and wouldn't even let me lay him on his side which he usually loves. He said since it was a viral pneumonia the fever would last a few more days and the pain was from the pneumonia too and sent us home.<br /><br />The next two days gradually got worse and worse and he wasn't even holding down pedialite and the fever and fussiness continued. He wasn't sleeping, constantly gagging himself and I've never seen him like that. He was suffering a whole lot so we took him back to the ER. It was now dec 30th 2010 at 9am I told them he was in a lot of pain in his stomach and they needed to check it. We went through the whole thing again...chest and stomach xray. The drs said he probably had ruptured his appendix and they also wanted to check how his pneumonia was looking. When the results came back the chest xray was completely normal and come to find out the drs looked back at his chest xray from the other night and said he never had pneumonia in the first place. Wow...right? We trust these people with our lives and they make a mistake like that. The stomach xray showed his stomach extended and nothing was getting in to his intestines. They sent us for an ultrasound to get a better idea of what was going on...it went on for an hour and a half because the tech couldn't figure out what the deal was so then the radiologist came in and was pretty confused himself. They just noticed a lot of fluid with debris floating around in<br />his stomach. Pretty inconclusive so they sent us for a catscan of his head and stomach. The reason for the head cat-scan again was to double check his shunt and the cat-scan would give more detailed info on his stomach. Pediatric surgery came by and said it looked like an infection of some type in his tummy but nothing needed to be done on there part that would correct it. Then the news from the neurosurgeon...his ventricles in his head were growing and they were much larger compared to the last catscan only days before which could mean a shunt infection or malfuction was going on. They advised us he needed emergency surgery that night. We tried to see if there was any way around it and they said he will prob be dead in a day or two without he surgery. His dr was out of town and the other pediatric surgeon was also. The on call doctor was a adult neurosurgeon and was called In at midnight. So it took them from 9am to midnight for them to figure this all out. What needed to be done was the shunt needed to be removed and they needed to put a temporary one in that is externalized which means instead of the excess fluid dumping in his belly it drains outside of his body in a bag. They do this until the infection goes away because if they put it right back in then the same thing will continue to happen. The surgery went well and we were able to see him after a few hours. Poor thing looked miserable and his iv had fallen out before surgery and they needed to replace it and then that one fell out after surgery and they tried to get a new one in for an hour but could not find a vein. A few hours later the dr came in and found one in his foot and by morning pediatric surgery came to put a pic line in which is a more temporary one but it required another small surgery. He also began to have a horrible cough due to the intubation so they were suctioning him every few hours trying to clear all that. He stayed in the ICU for a few days. Then was transferred to the pediatric floor because he was considered stable. He is still having problem holding down food but seems to be much more comfortable. <br /><br />During surgery they were able to drain some of the fluid in his belly to test it. It came back with two very bad bacterias and they still dont know how he got that. It's possible it came from the shunt but the neurosurgeons are skeptical about that because this type of bacteria infection usually occurs right after surgery and since he was a year out of surgery the likelihood of this to happen is 1percent. They are contemolating having the shunt drain in his heart instead of stomach becuase this could easlily happen again within the next couple weeks to months. At this point they are giving him two very strong antibiotics to help w the infection and hoping by next week they will put the new shunt in. We have now been here for 9 days and its been rough. Sal and I switch sleeping here and Brady has been having a hard time <br />without his brother around and both of us w him. We are so lucky though because we have been blessed with the most amazing family and friends. Everyone is offering support and prayers and that is how we are able to continue with positive attitudes and I know God is listening and watching over Dylan. <br /><br />Thank you everyone and God Bless!!! I will keep u posted.Amandahttp://www.blogger.com/profile/12671797644897595426noreply@blogger.com0tag:blogger.com,1999:blog-4906587919276233942.post-56483865273846373392010-12-23T15:35:00.001-08:002010-12-23T15:36:51.790-08:00Brady & Dylan<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1mLPcw2emD4P6Kbtt51Jk3rJ0H9F8xgA_RJy8KjYlA4k9Fr_ptDrHHtoHatqQ1V9BBOWdjCD7jj8mIS9L1OGkZ4SXdH1rVeCgTYCssgasopOI_GZbnB0R0opGvrWoldFK_nKQXFtSZDk/s1600/Brady+%2526+Dylan+2010+084.jpg"><img style="WIDTH: 320px; HEIGHT: 213px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5554025656383643970" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1mLPcw2emD4P6Kbtt51Jk3rJ0H9F8xgA_RJy8KjYlA4k9Fr_ptDrHHtoHatqQ1V9BBOWdjCD7jj8mIS9L1OGkZ4SXdH1rVeCgTYCssgasopOI_GZbnB0R0opGvrWoldFK_nKQXFtSZDk/s320/Brady+%2526+Dylan+2010+084.jpg" /></a><br /><div></div>Amandahttp://www.blogger.com/profile/12671797644897595426noreply@blogger.com0tag:blogger.com,1999:blog-4906587919276233942.post-29549899383708402802010-12-23T15:20:00.000-08:002010-12-23T15:35:22.958-08:00Dylan @ 14 monthsDylan has stayed out of the hospital and has been slowly gaining strength. He still has his feeding tube and we are trying to introduce foods orally now. He still has in home therapy 5x a week and his head control is finally coming along. Brady loves taking care of his little brother and he has been doing really well also. We are very blessed to have two amazing children like them!Amandahttp://www.blogger.com/profile/12671797644897595426noreply@blogger.com0tag:blogger.com,1999:blog-4906587919276233942.post-58200753181358542192010-12-23T15:10:00.000-08:002010-12-23T15:19:53.589-08:00Dylan 14 months<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoyuF6mv8BhnEm_VqJZUJs7UJGliYvOZ15YLFoGj7OocxxIbfdNCIqGC7RYaLmgKYUpYK897DmlybOcviKkai550wS2m1CYRymIMbaeNYuq_ponqh03sV5YCZvjW6CCzWrxr6k8JPp8UM/s1600/Brady+%2526+Dylan+2010+167.jpg"><img style="WIDTH: 213px; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5554021433349816098" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoyuF6mv8BhnEm_VqJZUJs7UJGliYvOZ15YLFoGj7OocxxIbfdNCIqGC7RYaLmgKYUpYK897DmlybOcviKkai550wS2m1CYRymIMbaeNYuq_ponqh03sV5YCZvjW6CCzWrxr6k8JPp8UM/s320/Brady+%2526+Dylan+2010+167.jpg" /></a><br /><div></div>Amandahttp://www.blogger.com/profile/12671797644897595426noreply@blogger.com0tag:blogger.com,1999:blog-4906587919276233942.post-78757442231504733472010-04-05T18:09:00.000-07:002010-04-05T18:13:59.647-07:00New Pic<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUnD6JEg3fta-6zsbX81D0FHUdLQEK-YtbfY7_PE4auJTKjak2sGIAA4-jvSjl7EmAr7WTnHQZ_nVX8mSy3qsndCdhtMslIrdjc2xL-5dXS-a40EP6htBxK8dBnfNgjPB0tUyoWG59EK8/s1600/Brady+24-30months,+Dylan+birth-6months+316.jpg"><img id="BLOGGER_PHOTO_ID_5456826370986964770" style="WIDTH: 320px; CURSOR: hand; HEIGHT: 240px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUnD6JEg3fta-6zsbX81D0FHUdLQEK-YtbfY7_PE4auJTKjak2sGIAA4-jvSjl7EmAr7WTnHQZ_nVX8mSy3qsndCdhtMslIrdjc2xL-5dXS-a40EP6htBxK8dBnfNgjPB0tUyoWG59EK8/s320/Brady+24-30months,+Dylan+birth-6months+316.jpg" border="0" /></a><br /><div></div>Amandahttp://www.blogger.com/profile/12671797644897595426noreply@blogger.com1tag:blogger.com,1999:blog-4906587919276233942.post-65549685524128720092010-03-06T15:40:00.000-08:002010-04-05T18:06:30.164-07:00U of M<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrGzhHw4G2wbWuC23uKqj5aBHOtx4nIi-2A0ZmDZB4vJLmC4JThUCPAqjhyB8QY7r3S9iIsCwMyYFn6-AA67emrbyK53TJC7vPoShYniehv0pwLmQAYypIZs8iaGpIeKrr3-D_C_IYl8w/s1600/Brady+24-30months,+Dylan+birth-6months+258.jpg"><img id="BLOGGER_PHOTO_ID_5456824583669616706" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrGzhHw4G2wbWuC23uKqj5aBHOtx4nIi-2A0ZmDZB4vJLmC4JThUCPAqjhyB8QY7r3S9iIsCwMyYFn6-AA67emrbyK53TJC7vPoShYniehv0pwLmQAYypIZs8iaGpIeKrr3-D_C_IYl8w/s320/Brady+24-30months,+Dylan+birth-6months+258.jpg" border="0" /></a><br /><div></div><br /><div></div><br /><div></div><br /><div></div><br /><div></div><br /><div></div><br /><div></div><br /><div>So before we could even put our bags down they were getting an <span class="blsp-spelling-error" id="SPELLING_ERROR_0">eeg</span> set up to see if seizures were an issue. After 48 hours of that test we received good news...no seizures. The <span class="blsp-spelling-error" id="SPELLING_ERROR_1">drs</span> decided they wanted an extensive <span class="blsp-spelling-error" id="SPELLING_ERROR_2">mri</span> done to check his shunt and brain. His first <span class="blsp-spelling-error" id="SPELLING_ERROR_3">mri</span> that was done at <span class="blsp-spelling-error" id="SPELLING_ERROR_4">beaumont</span> did not require him to be put to sleep but this one was over an hour and they needed to give him anesthesia bc he needed to stay still. Sal and I were <span class="blsp-spelling-corrected" id="SPELLING_ERROR_6">contemplating</span> doing that <span class="blsp-spelling-corrected" id="SPELLING_ERROR_7">because</span> he would then need to get <span class="blsp-spelling-error" id="SPELLING_ERROR_8">intubated</span> (which is a breathing tube ) and get an iv which was almost impossible <span class="blsp-spelling-error" id="SPELLING_ERROR_9">bc</span> of all his <span class="blsp-spelling-corrected" id="SPELLING_ERROR_10">hospitalizations</span> he no longer had any viable veins. After talking it over, we were convinced to go ahead with the test <span class="blsp-spelling-error" id="SPELLING_ERROR_11">bc</span> if God forbid there was something going on with the shunt this was the only way to find out and we needed answers. So I waited back in the room for them to let <span class="blsp-spelling-error" id="SPELLING_ERROR_12">me</span> know when he was back in recovery. He was going to the Pediatric Intensive Care Unit <span class="blsp-spelling-error" id="SPELLING_ERROR_13">bc</span> of the breathing tube and they did not want to <span class="blsp-spelling-error" id="SPELLING_ERROR_14">extubate</span> until he was fully awake. After at least three hours we decided to make our way to the <span class="blsp-spelling-error" id="SPELLING_ERROR_15">picu</span> to see what the problem was. He looked so weak and they were unable to get iv <span class="blsp-spelling-corrected" id="SPELLING_ERROR_16">access</span>. But believe me they tried!...They poked him over 30X!!! I was livid and the <span class="blsp-spelling-error" id="SPELLING_ERROR_17">anesthesiologists </span>was lucky that I did not see her again. Well that night they took the breathing tube out and I had to remind the doctors at least 10 times to reset his shunt settings back to 80 <span class="blsp-spelling-error" id="SPELLING_ERROR_18">bc</span> the magnets in the <span class="blsp-spelling-error" id="SPELLING_ERROR_19">mri</span> machine reset it. The next day he was struggling and I could just tell something was not right. He slept the whole day, his heart rate was elevated and if he was awake he was crying but the <span class="blsp-spelling-error" id="SPELLING_ERROR_20">drs</span> seemed to think he was fine. We had to keep telling them that he is our son and know what his norm is and that was not his norm. They got a culture and an <span class="blsp-spelling-error" id="SPELLING_ERROR_21">xray</span> and he had a collapsed lung and <span class="blsp-spelling-corrected" id="SPELLING_ERROR_22">pneumonia</span>. They put him on a <span class="blsp-spelling-error" id="SPELLING_ERROR_23">bipap</span> machine to help pop the lung open and it was taking days for him to improve. The MRI results came back and they were normal. At one point the doctors were thinking he was regressing and was not going to make it. They called the <span class="blsp-spelling-error" id="SPELLING_ERROR_24">pallitive</span> care team to come talk to us...which is a team for end of life care. We were not giving up on him and had faith that he was going to get better. Although Dylan <span class="blsp-spelling-corrected" id="SPELLING_ERROR_25">wasn't</span> yet baptized we asked our priest, <span class="blsp-spelling-error" id="SPELLING_ERROR_26">Father</span> Frank, to come to the hospital and baptize him. It seemed as if the following day he began improving. It was a true blessing from God and all the doctors were amazed with his <span class="blsp-spelling-corrected" id="SPELLING_ERROR_27">improvement</span>.<br /><br />After a few more days they moved Dylan back to the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_28">regular</span> pediatric floor and did a swallow study on him which he failed and we were no longer able to feed him by mouth <span class="blsp-spelling-error" id="SPELLING_ERROR_29">bc</span> he was <span class="blsp-spelling-corrected" id="SPELLING_ERROR_30">aspirating</span> and it <span class="blsp-spelling-error" id="SPELLING_ERROR_31">coul</span>d go into his lungs and cause <span class="blsp-spelling-corrected" id="SPELLING_ERROR_32">pneumonia</span>. They also did a <span class="blsp-spelling-error" id="SPELLING_ERROR_33">ph</span> probe test which tests for reflux which was positive and an echo on his heart which was fine. And finally they did a sleep study which was going to show if he had apnea where he stops breathing at night. It <span class="blsp-spelling-corrected" id="SPELLING_ERROR_34">showed</span> that he did <span class="blsp-spelling-error" id="SPELLING_ERROR_35">had</span> <span class="blsp-spelling-corrected" id="SPELLING_ERROR_36">obstructive</span> apnea which was <span class="blsp-spelling-error" id="SPELLING_ERROR_37">bc</span> of his low tone and his tongue would flop back. Some <span class="blsp-spelling-corrected" id="SPELLING_ERROR_38">doctors</span> were saying we would need to put a trek in or cut his <span class="blsp-spelling-corrected" id="SPELLING_ERROR_39">tongue</span> out and <span class="blsp-spelling-corrected" id="SPELLING_ERROR_40">reattach</span>. I thought they were all crazy until a surgeon looked at him and said to just position him on his side or <span class="blsp-spelling-corrected" id="SPELLING_ERROR_41">stomach</span> to sleep. I will NEVER again listen to doctors harsh approach and always get a second opinion. We have learned so much through this journey with Dylan and we need to be his advocate and cannot put all our trust in the medical system because it is very flawed in <span class="blsp-spelling-error" id="SPELLING_ERROR_42">alot</span> of ways.<br /><br />We are thanking God everyday for our angel and he came home on Feb 26<span class="blsp-spelling-error" id="SPELLING_ERROR_43">th</span>. Brady took it very hard when Sal and I were taking turns sleeping at the hospital every night but he is a trooper.<br /><br />It has been over a month and Dylan was doing great up until last week when he started throwing up again:( Nobody knows what the problem is <span class="blsp-spelling-error" id="SPELLING_ERROR_44">bc</span> we never got a reason when he was hospitalized bc it stopped on its own and all these other things took precident over that. I am devasted bc now they just want to do surgery and make his g tube a gj tube which would be placed in his small intestine and he will need to be attatched to a feeding pump all day and night. We will know more this week...</div>Amandahttp://www.blogger.com/profile/12671797644897595426noreply@blogger.com0tag:blogger.com,1999:blog-4906587919276233942.post-87517609387159253242010-03-06T14:33:00.000-08:002010-03-29T21:55:45.474-07:00Back to the ER<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuskhKNvsS_BzSEPWlbN30fKli-BbNl-TnjVFytUdS7JejKHrASujEPrV0AHGFbLigx-5CaOiR994eQgut8h8YJYl0snIktLbgnY8llzpQyRaoDBzVVsaUedE6Ya_QndOPhZnHQvzO9dU/s1600/dylan.jpg"><img id="BLOGGER_PHOTO_ID_5454285793044373474" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 163px; CURSOR: hand; HEIGHT: 122px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuskhKNvsS_BzSEPWlbN30fKli-BbNl-TnjVFytUdS7JejKHrASujEPrV0AHGFbLigx-5CaOiR994eQgut8h8YJYl0snIktLbgnY8llzpQyRaoDBzVVsaUedE6Ya_QndOPhZnHQvzO9dU/s320/dylan.jpg" border="0" /></a><br /><div></div><br /><div></div><br /><div></div><br /><div></div><br /><div></div><br /><div></div><br /><div></div><br /><div>On Feb 8 the home nurse came to weigh Dylan and he had started to lose weight so her and the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">pediatrician</span> suggested we take him back to the er. To be honest we no longer knew what to do for Dylan, he would maybe hold down one or two feeding a day. He was miserable and we were so concerned and just wanted an answer. Its a horrible feeling to see your child suffering and you cant help or fix it.<br /><br />So we went back into the er at <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">Beaumont</span> and they took some blood <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">and it</span> looked fine but they will admit an infant if they are losing weight <span class="blsp-spelling-error" id="SPELLING_ERROR_3">bc</span> of failure to thrive. So i spent the next three nights in the hospital with him with <span class="blsp-spelling-corrected" id="SPELLING_ERROR_4">absolutely</span> no answers still. They consulted with GI specialists and the <span class="blsp-spelling-error" id="SPELLING_ERROR_5">nuero</span> surgeons. One morning they took a blood from his heal and his <span class="blsp-spelling-corrected" id="SPELLING_ERROR_6">potassium</span> levels were high and they rushed him to the <span class="blsp-spelling-error" id="SPELLING_ERROR_7">PICU</span> and did a EKG of his heart <span class="blsp-spelling-error" id="SPELLING_ERROR_8">bc</span> he could have had cardiac arrest. Well they took another sample in a few hours and it was still high. They failed to mention that when you take a heel poke the results are usually <span class="blsp-spelling-corrected" id="SPELLING_ERROR_9">inaccurate</span>. So they <span class="blsp-spelling-error" id="SPELLING_ERROR_10">tryed</span> getting a vein and <span class="blsp-spelling-corrected" id="SPELLING_ERROR_11">couldn't</span> find one <span class="blsp-spelling-error" id="SPELLING_ERROR_12">bc</span> of all his months in the hospital prior to that and they pretty much used all his viable veins. The doctor had to get a blood sample from his groin and the results came back normal. So they were going to send us back to the pediatric floor and Sal and I had just about had enough with the whole situation. We did not enjoy living at the hospital and we were moving further and further away from an answer. Nobody was willing to run any tests to see what was going on. And not to mention <span class="blsp-spelling-corrected" id="SPELLING_ERROR_13">Dylan</span> had probably caught something being in the hospital <span class="blsp-spelling-error" id="SPELLING_ERROR_14">bc</span> he now had a horrible cough. We then started talking about a transfer to U of M and had Dylan <span class="blsp-spelling-corrected" id="SPELLING_ERROR_15">transfer ed</span> there by ambulance on Friday.</div>Amandahttp://www.blogger.com/profile/12671797644897595426noreply@blogger.com0tag:blogger.com,1999:blog-4906587919276233942.post-44967005069075731952010-03-05T15:06:00.000-08:002010-03-06T14:35:18.889-08:00HOME AGAIN!Home again!! Things were looking up again for a few weeks and then Dylan continued to throw up. We took him to the er on Jan 31 and they tested the shunt and did a chest <span class="blsp-spelling-error" id="SPELLING_ERROR_0">xray</span> to see if he had <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">pneumonia</span> and all came back <span class="blsp-spelling-error" id="SPELLING_ERROR_2">ok</span>. So the doctors thought he may just have a virus. As the weeks went on he continued to get worse.Amandahttp://www.blogger.com/profile/12671797644897595426noreply@blogger.com0tag:blogger.com,1999:blog-4906587919276233942.post-57474504537645974592010-03-04T15:07:00.001-08:002010-03-05T15:06:13.719-08:00Back to the NICUOk so its been a crazy few months and I am going to go back to December when we brought Dylan home...<br /><br />After we arrived home it seemed as if Dylan was getting very sick. He was throwing up more and more each day (sometimes it was 20 times a day), very irratible, his eyes wouldnt focus and would shake and roll behind his head, and he was sleeping most of the day. On Janruary 12 the home nurse came to weigh him and get all his other measurments and when she took his head circumfrence it was off the charts for the norm. When he was born his head was in the 70th percentile and they did a head ultrasound to see if he had a build up of fluid (hydrocephalus) which came back negative. When we got discharged it was up to the 90th percentile which the doctors did not seem to be concerned about. Sal kept asking everyone why his head was so large and why all of a sudden his eyes were shaking but again it was brushed under the rug and they said he just has a big head and that his eyes were week bc of the md. So coming back to the last measurment we could no longer trust that this was normal. My mom for weeks and weeks after we left the hospital was begging me to take him to get a head ultrasound and I beleived the doctors so much that I ignored her advice. But with the last measurment I realized my mom was probably right all along...moms know best:) She told me that the morining before he was looking up at her and she felt that he was telling her to save him!!<br /><br />We called the pediatrician and she advised we make an apt w a nuerologist and have them order a ct scan. The following morning I woke up with the worst feeling and was aboout to call the doctor when I recieved a call from her advising me to go in a few days to get one done on her order. I told her I couldnt wait any longer for an answer and Dylan was getting worse by the minute. She then told me to take him to the er and ask for a stat ct scan...<br /><br />Well come to find out it was exactly what we thought...and he had hydrocephalus. They admitted him back into the NICU and schedualed a MRI for the following day. The results came back that he had Dandy Walker Syndrome which is not affiliated with myotonic dystrophy at all. Great...my poor baby boy hadnt been through enougph already that he was now faced with this condition as well! Dylan was going to need another surrgery>>>brain surgery... for a <span class="blsp-spelling-error" id="SPELLING_ERROR_0">vp</span> shunt to be placed in head which would drain the fluid down to his abdomen. They did not want to wait any longer without the surgery so it was <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">scheduled</span> for <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">January</span> 14<span class="blsp-spelling-error" id="SPELLING_ERROR_3">th</span> <span class="blsp-spelling-error" id="SPELLING_ERROR_4">bc</span> it was life <span class="blsp-spelling-corrected" id="SPELLING_ERROR_5">threatening</span> and he could have been having seizures all along, and he was having the worst migraines that whole time and we had no clue what was happening.<br /><br />The surgery went smoothly, thank God!! And he was back home by the 17<span class="blsp-spelling-error" id="SPELLING_ERROR_6">th</span>.Amandahttp://www.blogger.com/profile/12671797644897595426noreply@blogger.com0tag:blogger.com,1999:blog-4906587919276233942.post-57451965219350237762009-12-23T20:24:00.000-08:002009-12-26T16:17:26.887-08:00DYLANS HOMEDylan finally came home on December 21, 2009. It was a <span class="blsp-spelling-error" id="SPELLING_ERROR_0">greaeaeaeaeat</span> day!...Long time coming:) It was the most amazing Christmas because we got the best present ever...having our little boy home. It was alittle sad saying bye to all the nurses we became so close with over the past few months. They really helped us get through such a difficult time. We will be sure to take Dylan back to visit them when he gets alittle stronger. One of his nurses made the most amazing scrapbook for us. She did a photo shoot with him in his Haloween costume and one in a santa hat and not to mention all the ones that were taken throughout the past few months...Dylan wide awake at 3am, first bath, first bottle>etc. Another one of his nurses made him the memory beads which were two long strands of acclomplishments. <br /><br />This is the first opportunity I have had to write because I have been getting adjusted to having him home. I forgot what it is like to live on a hour or so of sleep a night and on top of that having a wild toddler. By the time I warm his milk, allow an hour to pass for the feeding, change him, clean the pump, and then I have to pump-it is time to do it all over again. He still needs to eat every three hours. Although I am not sleeping through the night, Dylan is! He is still putting on weight which is great <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">because</span> that was a big problem he had which is why he still needs to eat every three hours for awhile. <br /><br />We did not take Dylan out for Christmas just because we wanted him to get adjusted to being home and we did not want to expose him to any sick people. It would be very dangerous if he gets sick <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">because</span> he could end up right back in the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">hospital</span> and on a ventilator. We are pretty much treating our house with the same rules as the hospital, at least until the spring. <br /><br />Brady <span class="blsp-spelling-corrected" id="SPELLING_ERROR_4">absolutely</span> loves his little brother and is a big help with him. He has been demanding a <span class="blsp-spelling-corrected" id="SPELLING_ERROR_5">little</span> more attention lately and we are making sure to give it to him. <br /><br />I have been slowly giving him 12cc of milk a day in a bottle and he has been pretty good about drinking it. For some reason though he has not wanted to nurse. It is going to be a long process to get him off the <span class="blsp-spelling-error" id="SPELLING_ERROR_6">gtube</span> but I have faith that it will come sooner then later. <br /><br />Thank you all for your thoughts and prayers...God Bless!Amandahttp://www.blogger.com/profile/12671797644897595426noreply@blogger.com2tag:blogger.com,1999:blog-4906587919276233942.post-51222455407578925262009-12-18T22:19:00.000-08:002009-12-18T22:22:44.591-08:00COMING HOME!!!December 17, 2009<br /><br />So we got the news that we can bring Dylan home on Monday. We couldn't be happier...but we are also a <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">little</span> nervous. Life is going to start feeling normal now and we can begin to be a real <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">family</span> now, <span class="blsp-spelling-error" id="SPELLING_ERROR_2">yayy</span>!Amandahttp://www.blogger.com/profile/12671797644897595426noreply@blogger.com3tag:blogger.com,1999:blog-4906587919276233942.post-8088682060433518222009-12-14T21:17:00.000-08:002009-12-14T21:20:37.048-08:00NO MORE NASSAL CANNULAI forgot a huge update...Dylan is <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">completely</span> on room air. He no longer needs the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">oxygen</span> and has been doing great with it, <span class="blsp-spelling-error" id="SPELLING_ERROR_2">yayyyy</span>! It was the best thing seeing his face <span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">completely</span> free of everything. Too cute!!:)Amandahttp://www.blogger.com/profile/12671797644897595426noreply@blogger.com1tag:blogger.com,1999:blog-4906587919276233942.post-34813322155860615852009-12-14T20:42:00.000-08:002009-12-14T20:49:17.902-08:00December 14, 2009Dylan has been doing <span class="blsp-spelling-error" id="SPELLING_ERROR_0">ok</span> since his surgery. LOTS of spit ups and throw ups which they are saying is normal after surgery. He also scares us when he gets upset and begins to cry <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">because</span> he will hold his breath and turn blue till he lets it out. This happens a few times a day.<br /><br />The <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">doctors</span> are thinking by next week Dylan will be coming home but these things need to get a little better before they will release him. And to be honest we <span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">don't</span> want him to come home until he is 100% ready.<br /><br />Thank you all for your support and prayers! God Bless!Amandahttp://www.blogger.com/profile/12671797644897595426noreply@blogger.com0tag:blogger.com,1999:blog-4906587919276233942.post-86796060446583033242009-12-10T21:58:00.001-08:002009-12-10T22:47:28.056-08:00G Tube<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCLWgDM-O3eUi-K9b1m0-Bn1mF4HNUfnluFtdOWRJWfCohcuoSLJu5J20hIBKlTibD_4cykSRTWgZu2R32R-TxJrNoJryqRSbhfjaVqGo65EcKtmI3TpyhfDil0JjJ920ff25uqko5ZKk/s1600-h/dylan.jpg"><img id="BLOGGER_PHOTO_ID_5413864439686519794" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 278px; CURSOR: hand; HEIGHT: 226px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCLWgDM-O3eUi-K9b1m0-Bn1mF4HNUfnluFtdOWRJWfCohcuoSLJu5J20hIBKlTibD_4cykSRTWgZu2R32R-TxJrNoJryqRSbhfjaVqGo65EcKtmI3TpyhfDil0JjJ920ff25uqko5ZKk/s320/dylan.jpg" border="0" /></a><br /><br /><div>December 10, 2009<br /><br />Today Dylan got his g tube surgery. He was wheeled down to the second floor in an incubator that he hardly fit in:) He was pretty confused since he <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">hasn't</span> seen anything besides his room in over two months. He was really awake in <span class="blsp-spelling-error" id="SPELLING_ERROR_1">pre</span>-op for over an hour, he was edible. I just wanted to snatch him and run.<br />He needed to be <span class="blsp-spelling-error" id="SPELLING_ERROR_2">reintubated</span> because of the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">anaesthesia</span> since it would slow his breathing down. They did that after they put him to sleep so it wasn't too <span class="blsp-spelling-corrected" id="SPELLING_ERROR_4">uncomfortable</span>. After an hour the doctor came out and said the surgery was a success and they were going to wheel him back to his room. He was actually awake which was surprising because of all the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_5">medication</span>. It was VERY hard seeing him <span class="blsp-spelling-error" id="SPELLING_ERROR_6">intubated</span> again and you could tell he wasn't too happy about it either.<br />About five hours after surgery the doctors decided to take him off the ventilator because all his <span class="blsp-spelling-corrected" id="SPELLING_ERROR_7">respirator</span> numbers were looking great and he was breathing over the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_8">ventilator</span> which gave them the push to <span class="blsp-spelling-error" id="SPELLING_ERROR_9">extubate</span>. As soon as they did he crashed!...He stopped breathing and his heart rate was plummeting quickly. The doctors started to bag him <span class="blsp-spelling-corrected" id="SPELLING_ERROR_10">immediately</span> to revive him (pretty much meaning they did <span class="blsp-spelling-error" id="SPELLING_ERROR_11">cpr</span>) and they were about to call <span class="blsp-spelling-error" id="SPELLING_ERROR_12">cardio</span> up when he starting responding. I guess he just needed a jump start and to keep everyone on there feet. It was very frightening to see that happen to your child right in front of your eyes. I think Sal and I lost 5 years of our life from that and we also needed a jump start to begin breathing again. After that the doctors and nurses stuck around for awhile to make sure he was stable again, and he was!...He started to do great but I still <span class="blsp-spelling-corrected" id="SPELLING_ERROR_13">couldn't</span> leave him. I stayed till 8 tonight until he was dressed and back in his crib and ready to sleep. His nurse Carol was a Godsend today and kept us sane. We are so blessed to have such wonderful nurses to help us get through these difficult times. I know it is there job but they really do go above and beyond for there patients, especially for Dylan because they have built a strong connection with him...it is hard not too:) So after a long day we thank God for making it a <span class="blsp-spelling-corrected" id="SPELLING_ERROR_14">successful</span> one!!<br /><br />Thank you all for your continued thoughts and prayers. God Bless!</div>Amandahttp://www.blogger.com/profile/12671797644897595426noreply@blogger.com2tag:blogger.com,1999:blog-4906587919276233942.post-87075593709113090942009-12-05T20:31:00.001-08:002009-12-10T22:53:00.925-08:00December 9, 2009<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1Uvx74Oo3g53yd3cl5M5dOJwHtHTgbCk7xD5nRNzOeqJGQ4B5OHpTwlWifTBDkm9ckrlK1CAC6WESf26T3LkvkZuc76cx74pw3xEcFkDOtXbfIXEke4aKUlPX366pjRacgni8mdAUj0I/s1600-h/dylan2.jpg"><img id="BLOGGER_PHOTO_ID_5413867990985227250" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1Uvx74Oo3g53yd3cl5M5dOJwHtHTgbCk7xD5nRNzOeqJGQ4B5OHpTwlWifTBDkm9ckrlK1CAC6WESf26T3LkvkZuc76cx74pw3xEcFkDOtXbfIXEke4aKUlPX366pjRacgni8mdAUj0I/s320/dylan2.jpg" border="0" /></a><br /><div>So we decided yesterday that we are going to go ahead with the g tube. A g tube is basically a tube that is surgically inserted into his stomach that will allow us to feed him through.<br /><br />Things moved along very quickly because the surgery is <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">scheduled</span> for tomorrow. I guess its better so we don't have to keep thinking about it and we can begin to move forward. This way we don't have to worry if he is taking in <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">enough</span> food and we can slowly work on his oral feeds without stressing him out too much. He does not yet have the strength to eat <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">enough</span> food and <span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">hasn't</span> yet even been able to try. When his oral feeds are doing well the <span class="blsp-spelling-error" id="SPELLING_ERROR_4">gtube</span> can get taken out, well it will close on its own. The doctors said the only thing holding him back from coming home was the feeding situation. We are now hoping we will be abl to bring him home soon.<br /><br />He will have to be re <span class="blsp-spelling-error" id="SPELLING_ERROR_5">intubated</span> again which is horrible but <span class="blsp-spelling-corrected" id="SPELLING_ERROR_6">necessary</span> and he will hopefully be off of it fairly quickly. His casts were removed on <span class="blsp-spelling-corrected" id="SPELLING_ERROR_7">Monday</span> so he could get up to date on his <span class="blsp-spelling-corrected" id="SPELLING_ERROR_8">immunizations</span> because they administer them in the muscle of the thigh. They were going to recast today but the <span class="blsp-spelling-error" id="SPELLING_ERROR_9">dr</span> thought that he didn't want to put him under too much stress so we will probably put them back on next week.<br /><br />I will keep you all posted tomorrow. Please say an extra prayer for Dylan tonight.<br /><br />Thanks for your support and prayers. God Bless.</div>Amandahttp://www.blogger.com/profile/12671797644897595426noreply@blogger.com0tag:blogger.com,1999:blog-4906587919276233942.post-24850057226690490382009-12-05T20:23:00.000-08:002009-12-05T20:35:10.743-08:00Non Nutritional FeedsDecember 5, 2009<br /><br />Yesterday was a good day!...I was able to do non nutritional feeds which means I had to pump but then was able to nurse Dylan. He did better then expected, he latched on pretty well and sucked for a good ten minutes. He was able to get some milk because your body produces milk constantly but its not an overwhelming amount that would cause him to choke.<br /><br />Today I was able to try again...two times. He did really well again!! So we are really happy about that.<br /><br />He is also on 30z of milk every three hours and is almost 10 pounds. We <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">couldn't</span> be happier with all his progress. <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">Although</span> the doctors still want to sit and meet with us to discuss the option of a g tube. Its something we are contemplating and don't know which decision to make since he <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">hasn't</span> been given an opportunity to really feed (suck and swallow). I guess when that happens we may have a better idea of what to do.<br /><br />Thank you for all your support and prayers. God Bless.Amandahttp://www.blogger.com/profile/12671797644897595426noreply@blogger.com3tag:blogger.com,1999:blog-4906587919276233942.post-69597472403947938172009-12-03T18:47:00.000-08:002009-12-03T19:09:27.360-08:00December 3, 2009I wasn't able to visit Dylan for 4 days. I was having some serious Dylan <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">withdrawals</span>!!<br /><br />He got his new casts on Monday. His feet are already starting to look much better, hopefully he only needs 2 more weeks of casting then a small surgery to release his a<span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">chilles</span> tendon and two more weeks of casting after that.<br /><br />He is starting to gain a little more weight since he is now on 86cc every three hours and its being fed <span class="blsp-spelling-error" id="SPELLING_ERROR_2">gastricly</span> through a nasal tube. They are administering it over an hour and giving him a two hour break. They add some human milk <span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">fortifier</span> to fatten up the milk plus we are only giving him my <span class="blsp-spelling-error" id="SPELLING_ERROR_4">hindmilk</span> (which is the fatty part of my <span class="blsp-spelling-error" id="SPELLING_ERROR_5">breastmilk</span>).<br /><br />Yesterday the occupational therapist was able to start some tastes. She pretty much puts some <span class="blsp-spelling-error" id="SPELLING_ERROR_6">breastmilk</span> on the pacifier to see how well he will suck and swallow. He is doing pretty good but she thinks he still <span class="blsp-spelling-corrected" id="SPELLING_ERROR_7">doesn't</span> have a strong gag reflex or the stamina to suck for a extended period of time. Hopefully next week he will be given an opportunity to try. The <span class="blsp-spelling-error" id="SPELLING_ERROR_8">dr's</span> are trying to convince us to place a g tube but we are not yet ready to make that <span class="blsp-spelling-corrected" id="SPELLING_ERROR_9">decision</span>. We think he <span class="blsp-spelling-corrected" id="SPELLING_ERROR_10">should</span> at least be given a chance to feed before putting him through a surgery.<br /><br />Thanks for all your support and prayers. God Bless.Amandahttp://www.blogger.com/profile/12671797644897595426noreply@blogger.com0tag:blogger.com,1999:blog-4906587919276233942.post-91850997826352514802009-11-27T13:50:00.000-08:002009-11-27T14:06:31.668-08:00November 27, 2009November 27, 2009<br /><br />Today they changed his feeding schedule again...the milk would be given over an hour time span and then he would be given a two hour break before starting that process over again. The hope is to get him used to eating a large amount and getting a break like most babies are used too. Today I was not able to go to the hospital because I have a cold and they are very strict not too allow anyone with any flu like symptoms in the hospital and I especially wouldn't want to take the chance and get Dylan sick. They are also not allowing children under 5 in the hospital, so Brady is not able to see his brother anymore. He would get so excited to see him and right when we would walk into the hospital he would start chanting deedee(that's how he says Dylan)...toooo cute! <br /><br />So I just called to check on him and they said he was not tolerating his feeds and he threw up so they changed him back to giving him only an hour break. Maybe he just needed some more time to adjust to having such a large volume of milk in his stomach at once. To think last week he wasn't even tolerating the milk gastricly. <br /><br />Thank you for your support and prayers. God Bless.Amandahttp://www.blogger.com/profile/12671797644897595426noreply@blogger.com2tag:blogger.com,1999:blog-4906587919276233942.post-44046617528537209872009-11-26T10:31:00.000-08:002009-11-26T10:44:34.192-08:00Thansgiving DayNovember 26,<br /><br />Today is Thanksgiving and we really do have a lot to be thankful for but our days <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">don't</span>' feel complete with Dylan not home with us. Hopefully we are moving on <span class="blsp-spelling-error" id="SPELLING_ERROR_1">the</span> right track to finally bringing him home.<br /><br />Dylan was on <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">continuous</span> feeds and yesterday night they decided to <span class="blsp-spelling-error" id="SPELLING_ERROR_3">switch</span> him over to feeds over a two hour span and giving him a break for an hour. We are hoping he will gain more weight like this because the doctors are worried that he is not gaining enough. <br /><br />Thank you for you support and prayers. God Bless!Amandahttp://www.blogger.com/profile/12671797644897595426noreply@blogger.com0tag:blogger.com,1999:blog-4906587919276233942.post-70320629577890140822009-11-24T23:01:00.000-08:002009-11-24T23:02:21.101-08:00Gastric FeedsNovember 24, 2009<br /><br />The doctors decided to give Dylan a chance with gastric feeds. It has been going great so far...no spit ups and everything is moving along nicely. We are thrilled and hope this will lead to him finally taking a bottle or just nursing. They are thinking he wont be able to suck and swallow properly and even if he is able to they don't think he will have the strength to take in the amount necessary for weight gain. So therefor a <span class="blsp-spelling-error" id="SPELLING_ERROR_0">gtube</span> would need to be placed in the stomach. We hope and pray this is not something that will be needed.<br /><br />Thank you for your continued support and prayers. God Bless.Amandahttp://www.blogger.com/profile/12671797644897595426noreply@blogger.com0tag:blogger.com,1999:blog-4906587919276233942.post-24058650352020118802009-11-24T22:59:00.000-08:002009-12-03T18:50:53.822-08:00First CastNovember 23, 2009<br /><br />Dylan got his first set of casts put on today to correct his clubfeet. He was such a champ and did not cry once. I hope it wont be too hard on him because he has been so used to having his legs and feet free. Where as Brady did not get too long to become used to it since he was casted 6 hours after he was born. Dr. <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Seteserri</span> will come out once a week on Mondays and continue to cast until his feet are in the correct position.<br /><br />He is still going strong with his breathing so the next move will be to move the feeding tube back to his stomach. He has been throwing up a little so we are hoping this does not delay the doctors from trying to move the tube up for gastric feeds. The concern would be his aspirating and the fluid getting int his lungs and it causing pneumonia. We are praying that that wont happen and that he will be able to digest the food now because this will bring us just a little bit closer to bringing him home.<br /><br />He also sat in a bouncy seat for the first time and tolerated it pretty well. At least he can get a different view of his room now which is the only place he has seen in his 6 and a half weeks of life.<br /><br />Thank you for all your support and prayers. God Bless.Amandahttp://www.blogger.com/profile/12671797644897595426noreply@blogger.com0tag:blogger.com,1999:blog-4906587919276233942.post-38391205038828582882009-11-24T22:58:00.000-08:002009-11-24T22:59:23.401-08:00First BathToday Dylan got his first bath, yayyy!!<br /><br />Dylan got his central line taken out the other day so I took a bathtub in and he got his first bath on November 19. He loved it, he seemed a little confused about what was going on but did not make a sound the whole time. He has such a personality already and is very vocal about what he wants. When his diaper is wet he will let us know immediately...which is very unlike his older brother:) When his pacifier falls out or when his mobile stops he will make his lion cry heard, lol. I still love to hear him cry since I havent heard him cry in weeks and when I did it was only for two days. Its the small things that we took for granted before and we will appreciate every moment from here on out with both our boys.<br /><br />Thank you for all your support and prayers. God Bless.Amandahttp://www.blogger.com/profile/12671797644897595426noreply@blogger.com0tag:blogger.com,1999:blog-4906587919276233942.post-60195251062364588842009-11-19T10:58:00.000-08:002009-11-24T22:40:19.375-08:00Off cpapNovember 16, 2009<br /><br /><br />Dylan has been <span class="blsp-spelling-error" id="SPELLING_ERROR_0">extubated</span> for one week now. So far, everything has been looking great from a breathing perspective. The <span class="blsp-spelling-error" id="SPELLING_ERROR_1">doctors</span> feel like he is strong <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">enough</span> to come off of the <span class="blsp-spelling-error" id="SPELLING_ERROR_3">cpap</span> and only use a <span class="blsp-spelling-error" id="SPELLING_ERROR_4">nasule</span> <span class="blsp-spelling-error" id="SPELLING_ERROR_5">cannual</span>. This is a huge step toward him breathing <span class="blsp-spelling-corrected" id="SPELLING_ERROR_6">completely</span> on his own.<br /><br /><br /><br /><br />Thank you for your continued prayers.Amandahttp://www.blogger.com/profile/12671797644897595426noreply@blogger.com0tag:blogger.com,1999:blog-4906587919276233942.post-37446016014112817532009-11-14T20:50:00.000-08:002009-11-24T22:39:17.107-08:00Five days off the ventilatorNovember 14, 2009<br /><br />Dylan has lasted five days off the ventilator and we were so excited when yesterday the doctors told us we can see how he does off the cpap and go just on a canule when we hold him. They told us only for one hour but when they saw how good he was doing they told us for however long we hold him for...which was three hours. And again today he went for another three hours.<br /><br />He is tolerating his foods and they will be taking out his central line on monday. He is on 3oz of breasmilk every three hours now. Still tube feeding though.Amandahttp://www.blogger.com/profile/12671797644897595426noreply@blogger.com0tag:blogger.com,1999:blog-4906587919276233942.post-31493834194748105452009-11-09T14:55:00.000-08:002009-11-24T22:33:45.461-08:00OFF THE VENTNovember 9, 2009<br /><br /><br />Today the doctors decided Dylan was ready to get a shot off the ventilator...yayyy!! So far so good. It is now 6:30pm and he was taken off at 2:30pm. We are all praying that he is strong enough to go the long haul. I will keep you all posted...<br /><br /><br /><br />Thank you for all your support and prayers. God Bless.Amandahttp://www.blogger.com/profile/12671797644897595426noreply@blogger.com0