Translate This Page To: Spanish German French Italian Portuguese Norwegian Brought to you From FreeTranslation.com Kyle H. Kyle's Quilt of Love *HUGS* TOTAL! give Kyle more *HUGS* Get hugs of your own Current Page Page One Page Two Make a Smilebox slideshow UPDATE: 8-16-10 I have not written on 'Kyle's Page' for a long time. I miss so much updating news about My Sweet Boy! I have been in the hospital with brother Ryan for 47 days he had a twisted bowel but had surgery and it worked for him PTL I almost passed out when the surgeon told me All the memories of Kyle came flooding back every day and the Why?? Why didn't it work for Kyle? No one can answer that. To be so happy for one child and so sad for the loss of another it is really a awful place to be in. I meet a family at the hospital we were neighbor's in the PICU and on the regular floor..Such nice people and such a tough thing that happened to their son. I am grateful that he is still there with them that they can hold him, touch him, kiss him, feel him, talk to him. I so miss that. I cry and I wish things were different...I wish I would wake up from this horrible dream and see my Kyle again. I can't believe that it is getting close to a year all ready...Wow where did the time go? seems like a dream I just exist every day...Do what I have to and that's about it. Well I suppose I could go on forever ...My memories sure will... God Bless, Jena UPDATE: 5-17-10 I am missing my sweet boy. Today has been rough or maybe it just all added up today. I notice lately that when I talk to others about Kyle {except the people I am around the most} They get very quiet and don't say much...I wonder why? Is it to hard on them? Do they think they make me feel bad? I know it is all good hearted but I have been able to talk more about him with out crying....I have learned to cry only when I am alone. I will always be sad this will never go away. I don't want him to be forgotten. I went to the PICU the other day to visit a friend who's daughter is in there and it was hard. For a minuet all the memories flooded back. I just pushed it to the back of my mind and moved on. I wanted so bad to be pushing Kyle in his chair along side of Ryan. I miss him so much. Today I listened to the song "I'm Free" by Lynda Randell. It made me know that Kyle is in a better place that he is free from pain and confinement but I know I will never get over the missing him it will never be easier it will never be okay it will never be just get over it and move on get back to normal type stuff. I am able to be more happier in public now and when I see people I know...they say to me "I am glad you are looking much better" I just smile but..... inside I am sad. I don't wish this on anyone to loose a child is awful and I believe it will be for the rest of my natural life and the day I enter Heaven will be the day all my pain is gone and I look forward to the day I meet Kyle in Heaven. American Family Children's Hospital in Madison,WI remembers the kids who passed away they have a day for that and they asked me to send a picture and write something about Kyle So I did ....and I wrote... "I am thankful for being chosen to love a child with special needs, a child who had taught me to Love unconditionally and to simply enjoy each other and to never take it for granted. If you knew Kyle you were blessed by knowing my sweet boy. If you knew of Kyle you were blessed by the things I told you about my sweet boy. If you never got the chance of either I am sorry, for you missed out on the sweetest boy ever! If I could have just one wish I'd wish for one more day with Kyle. I miss you my Sweet Boy!" I didn't go to the presentation...I didn't think I could handle it...maybe next year. I am thankful they remember. I have all my memories but it seems memories are just out of reach of something more needed. That I am looking for that physical touch and it's not there. It's sad to be sad inside. It's sad to want something so bad and I can't get it . It's sad to want and to ache for the impossible. It's just plain sad to be sad. This is my life now inside hidden deep and only shows when I am alone. Jena UPDATE: 2-27-10 Hi, The other day I had a visit from a lady who sold grave markers and she wants me to pick one out for Kyle...Oh I held it all in but deep inside some where the pain was real...I wish I had not been doing this I wish he was sitting next to me and we were talking about something else....Life is so hard with out my sweet, sweet boy...I don't know what stone to get or what to put on it..It just makes me sick to my stomach..but I must go on...but I don't want too...not with out you...but I have too... I am so grateful that God chose me to be mom to Kyle and even though Kyle was not far away I never had heard of him and so I am truly blessed to have had Kyle in my life and for that I thank God but I miss my sweet boy SO much! God Bless, Jena Don't be afraid to mention my child- The one that died you know. Don't worry about hurting me further The depth of my pain doesn't show. Don't worry about making me cry, I'm already crying inside. Help me to heal by releasing The tears that I try to hide. I'm hurt when you just keep silent Pretending that He didn't exist, I'd rather you mention my child Knowing that He has been missed. I say "pretty good" or "fine" But healing is something ongoing, I feel it will take a lifetime Grief is not a sign of weakness, nor a lack of faith ... it is the price of love. If I Could Have Just One Wish..... I'd Wish For One More Day With Kyle, I love you my sweet boy..... UPDATE: 10-14-09 TAKEN FROM ME I'm sitting here in my room, looking at your picture. Wondering why you couldn't be a part of my future. Uncontrollable tears stream down my face, while my heart beat starts to race. Asking god why he took you from my life, it was more painful than stabbing me in the heart with a knife. I still needed you here you were the one to make everything so clear. You are apart of me and I am apart of you when you died a part of me died too. I never knew how hard it was to loose someone you love until the day you went to heaven above. Even though I can't see, I know your up there watching over me. I miss you more and more everyday and all I can do is pray. In my heart you shall forever remain. For You-Jena, for your "sweet-boy" Kyle: Ever since he was 13 year's old 'til the age of 20, you have covered him with your love----now in Heaven's home, he is covered with God's love: Love Always, ~Mom~ UPDATE: 10-12-09 Hi..... Kyle's funeral{ Oct. 10th,2009} went well ..There were many people there who's life he touched. I want to thank everyone who helped us through this very difficult time....We are very grateful...I want to thank everyone who came to celebrate Kyle's life...I am so happy he touched each and everyone of you in a special way...Thank you for remembering such a awesome boy! My heart aches for you my sweet, sweet boy! I miss your touch, the feel of your hair, your smile, your kind, gentle eye's your huge loving, happy smile...The pain of your leaving too soon hurts so bad! The only thing that comforts me is knowing Kyle is whole and with Jesus... My tears fall for you my son for all the things you gave to me for all the memories for all the love... He was such a good boy and he will be missed each second of each day and loved always and forever. I Love You Kyle!! God Bless, Mom UPDATE: 10-9-09 My sweet boy went to be with Jesus on October 5th at about 8:30 Pm. All his sisters, Kyilee, Ryan, mom and dad were there. He opened his eyes and looked around at every one before he left. I love my Kyle SO much and I miss him BAD....I just want to hold him, kiss him, touch him and tell him I love him again...What am I going to do with out you son...why did you leave me so soon...but then I have to not be so selfish and be glad that he is free from the things he could not do here. Free from the pain Free from the struggles he lived with every day but most of all he is at peace with no more pain, no more sickness, no more struggles. He is the lucky one...He will never be forgotten. God Bless, Jena and Kyle UPDATE: 10-5-09 There is nothing the Drs can do for Kyle.....Drs are keeping him comfortable until he passes. Please pray for us his family. Who has great sadness about missing him but great gladness that he will be with Jesus and free from his body that has caused him so much pain. I LOVE YOU MY SWEET BOY!!!! God Bless, Jena and Kyle UPDATE: 10-5-09 PLEASE PRAY FOR KYLE!! He was taken by ambulance from home at 5am with a VERY low BP, low sats,cold and unresponsive. He was taken to NL hospital where his WC is 3 times higher then normal and his acid level his high. He is getting a helicopter ride to Madison where I am. The Dr here wants a central line in him first. I talked to him on the phone and he was more responsive. They are warming him up. His nurse was trying to get him stable and then had no choice but to call the ambulance. I feel so helpless I can't wait to see him! God Bless, Jena and Kyle UPDATE: 10-3-09 Hi, Kyle is doing well at home with everyone...He watched the Badgers play today with his nurse and was laughing! I miss you buddy!!!!! God Bless, Jena and Kyle UPDATE: 10-2-09 Hi, Kyle is doing good at home with the nurses and family while Ryan and I are at the hospital longer then expected....I miss him SOOOOOO much. I talk to him on the phone and I can hear him make noise with his trach but it is not the same. There are sickness around here so he is better at home I don't want to chance the flu but I miss him so much! We are so blessed Kyle is healthy! This time last year was not a nice time for Kyle. God Bless, Jena and Kyle UPDATE:9-26-09 Hi Kyle has been good but not sleeping well and I am thinking it is the new seizure med. I am seriously thinking of putting him back on Topamax ugh! He is at home with all of the nurses taking care of him while I am in Madison with Ryan. Kyle is doing okay he had a slight fever please pray he is not getting sick. I did not want to bring him cause of all the flu stuff so I am thankful for what the nurses are doing by helping out and being there! What a blessing! God Bless, Jena and Kyle UPDATE: 9-18-09 Hi, Kyle is doing okay...he has night nursing which is nice to watch for seizures but....he had a BAD seizure the other night, no nursing here just me and Kyilee, We were saying prayers and then goofing around and playing with Kyle and one second he was laughing and then then next he was in a full blowen seizure OMGosh!! he turned BLUE I am not kidding....he dropped from 100% to 77-71% in seconds...his whole body was stiff and and jerking he looked like he was in severe pain so I told Kyilee to hold him and and hold the trach mask over his trach while I hook the tubing up to Ryan's o2..she did really good and didn't panic. As soon as we put the o2 on he slowly went back up to like 97% Wow! Then gave him Diastat and that helped. His seizure continued for 40 minuites but the longer it went on the less it got. He was in and out being responsive. Then his leg was the only thing that was moving back and fourth and then only his foot and then he was done but confussed and hurting.....Thats takes a lot out of the body and on the muscles. I called his Neuro Dr and she has put him on Falbatol not nice side effects but niether are seizures! Also gave him Larazepam to drop in is nose as a rescue drug as she dosen't think the Diastat is working very good anymore. So I am on a mission to get Kyle his own o2 and I am in full belief that every person with a seizure disorder should have o2! It only takes one time to change the life of a family, one time to never see your child again until you enter heaven, and only one time to feel regret that you could have done more..... God Bless, Jena and Kyle UPDATE: 9-11-09 Hi, Kyle is doing okay...he has night nursing which is nice to watch for seizures but....he had a BAD seizure the other night, no nursing here just me and Kyilee, We were saying prayers and then goofing around and playing with Kyle and one second he was laughing and then then next he was in a full blowen seizure OMGosh!! he turned BLUE I am not kidding....he dropped from 100% to 77-71% in seconds...his whole body was stiff and and jerking he looked like he was in severe pain so I told Kyilee to hold him and and hold the trach mask over his trach while I hook the tubing up to Ryan's o2..she did really good and didn't panic. As soon as we put the o2 on he slowly went back up to like 97% Wow! Then gave him Diastat and that helped. His seizure continued for 40 minuites but the longer it went on the less it got. He was in and out being responsive. Then his leg was the only thing that was moving back and fourth and then only his foot and then he was done but confussed and hurting.....Thats takes a lot out of the body and on the muscles. I called his Neuro Dr and she has put him on Falbatol not nice side effects but niether are seizures! Also gave him Larazepam to drop in is nose as a rescue drug as she dosen't think the Diastat is working very good anymore. So I am on a mission to get Kyle his own o2 and I am in full belief that every person with a seizure disorder should have o2! It only takes one time to change the life of a family, one time to never see your child again until you enter heaven, and only one time to feel regret that you could have done more..... God Bless, Jena and Kyle Kyilee, Kyle, and Nicole------------------- Kyilee and Kyle UPDATE: 8-14-09 Hello..... Kyle has been well except for a ear infection on July 21st he was put on meds and did fine. Well now he has a double ear infection again! His jaw and neck are swelled up on one side and back on meds again...Last night he was in a lot of pain very stiff beat red heart rate was 140-150. He was in pain. I thought he was having a responsive seizure but then this morning something just clicked to check his ears and they are both red Ugh! so back on meds....He has also been having seizures mostly during the night. He is completely off of Topamax and he has had 2 different and worse seizures Praise God we have a pulse ox! so I called the Neuro and she raised his Keppra dose at night...so far so good. Kyle is almost ready for home nursing to start. Dr sent back his paper work signed so that is good. I believe we have some one who wants nights which is nice cause of his seizures. God Bless, Jena UPDATE: 8-7-09 Kyle is still doing well...We have had to go back to J tube feeds and we had to slow his pump rate back to 100 but thats okay..he is still doing great and I think he would have been fine I just was worried with some issues going on....'A ounce of prevention is worth a pound of cure' ...right?? Kyle got his hearing aids back so he can hear better now ...He is good at reading people's faces and body movements to know how he should react...now maybe he can hear to react. I don't know... Old habits die hard. He seen his ortho Dr for a check up and he is fine! he only has to go back if there are problems....Love the Dr but hope to only see him in passing! We weighed him and he is 77 pounds so he is still gaining weight....I am so happy about that! On our way to Madison he laughed the whole way there....He was in the back of the van..we got another set of tie downs and so it's more bumpy the way Kyle likes it. We are so blessed to have Kyle healthy, happy and back to his old self...words can not express the blessing we feel and for all the friends and family who helped us. May God Bless YOU!! Please continue to pray for Kyle! God Bless, Jena and Kyle UPDATE: 7-17-09 Hello! Kyle is still doing good....He is still working on his Tobi nebs ,,,they gave him 28 days worth 2 times a day He will be done the end of this month. It has helped. This morning he had a plug in his trach and so I had to pull the trach and suction down his trachea but we got it . There needs to be some excitment right?? I have been feeding him in his stomach all the time now and slowly raising his pump rate up by 5 each day...he is at 135 and doing good! I have cut back on the Reglan to 3 a day and he has not needed Miralax in 2 weeks Praise God! I want to get him off of Reglan because I don't like the side effects it can cause. I only flush his JTube now. We are on the second week of getting off of Topamax so far so good..... No seizures. Yesterday we went swimming It was GREAT!! Kyle had a great time...As soon as Kyle got in the water he started laughing...It has been 2 years since he swam...he really missed it. It was so nice to see him so happy I have video and pictures. It is SO nice to be 'Normal' again! He was still laughing after swimming. I want to take him every week It is so good for him. God Bless, Jena and Kyle UPDATE: 7-9-09 Kyle is doing so good! He is gaining weight, laughing and enjoying the things he use too! I am so blessed to have my son back. God is good!! Thank You....We went to Madison the other day for Ryan and Kyle came along and he was so happy riding again. I have started to feed him in his stomach-G-Tube for a few hours each day and then switch him back to his J-Tube my goal is to do all stomach feeds...I never believed there was anything wrong with his stomach. We are back from a long day at the clinic.....Kyle is 71 pounds YEAH! He was 68 pounds. His ultra sound of his kidneys are the same as 6 months ago so that was good I asked that Kyle be taken off of Potassium Citrate because I was concerened about bloating and I am always worried about his bowels...don't want to rock the boat and his kindney doc said that is fine and he hopes that with the amount of water he is getting depending on the kind of stone it may dissolve....also he seen neurology and I asked that he be taken off of Topamax big cause of kidney stones and she agreed so we will wean off of that and just stay on Keppra if he starts to have seizures I will call her and we will do more Keppra. I am going to sign Kyle up for independent nursing soon for a few hours to help out. I think the middle of this month he will be done with the nursing agency but they always said they couldn't find anyone. Didn't do anything on the 4th It is too late for Kyle by the time they start fireworks and when I did take him he was not real impressed ....too loud. God Bless, Jena and Kyle UPDATE: 6-3-09 Hi Kyle is doing great! He went to trach clinic and everything is doing good except he needs to gain some weight so they have added another can of formula and he is doing well with it. He is happy to be home....We got a copy of some adult Drs for him whenhe turns 21...I will hate that day! but I pray Kyle stays healthy and we won't have to see them much. God Bless, Jena and Kyle UPDATE: 5-23-09 Hi Kyle is still doing great...he had a GI appointment and it went good after all we went through with that I am so glad it was a relaxing appointment and the GI Dr was very nice...he said I could slowly raise his pump rate up too 100 still feed him in his J Tube d/c the Miralax YEAH!!!! This is a BLESSING!!! Everything is working good inside of Kyle and out..lol He is so happy it's like his old self was gone for a long while and now he is back Praise God! I told the GI Dr that my goal for Kyle is to start to use his Gtube again for feeds that I never believed he needed a Jtube but if I would not have done it and he needed it that would not have been good for Kyle. I give all his med's and 8 ounces of water with his med's, 4 times a day in his G tube now. I have d/c'd the vent bag...he started putting out less and less so I stopped it and he has been fine. I don't want to push too hard to use the G tube yet but we will get there...I was so happy when we left that appointment...and we only have to come back if needed so that's even better!! His pressure sore is all healed...One sad thing is his spasticity has come back full force he has bent his head rest on his chair pushing on it so hard..I think it is close to breaking...when he laughs hard he stands up in his chair as far as the seat belt will let him and his head tips back and he is laughing and pushing....It is so neat to see....My Kyle is back! He also got his staples out of his belly there were 18 of them and it didn't hurt at all he just sat there...Dr said they took out 30cm of bowel...I thanked him again for what he did for Kyle. He was very pleased with his progress course they say this can happen again but they hope now...I have faith...it won't and if it does we will get through it again. Today some friends came to visit and their kids were running around and Kyilee and Kyle was laughing so hard one of the nurses from the floor came and sat by us and couldn't believe how hard Kyle was laughing...he really enjoyed watching and listening to the kids and watching TV with them. It was a great time! I think he is gaining weight just by lifting him but he has a ways to go. Please pray for Kyle. God Bless, Jena and Kyle UPDATE: 5-19-09 Kyle is doing good....He finished his Tobi nebs and is not coughing and not as much stuff coming out. He is tolerating his feeds he is up too 5 cans and some more water then he was getting. I have his pump rate up to 80 and he is doing well. Since I started giving him his 5 cans his pressure sore started healing fast...more protein and I think he may be gaining some weight he feels heavier. I do all his med's and water in his stomach I am praying we can go back to only G tube feeds again. I never believed that Kyle needed a J tube but then again I'm not a Dr. and if I would not have tried I would have felt bad for him. He has a GI appointment on the 19th and he gets his staples out on the 21st....that will be nice! He sat at the edge of the bed for 4 minuets the other day!!! I was so impressed I could walk away from him and he just kept sitting! I could not believe it..guess being spastic again helps with that. What I love the most is seeing him sleep all night and see his beautiful smile every morning! and no more pain! God Bless, Jena and Kyle UPDATE: 5-14-09 Kyle is still doing great!! Today he is in such a good mood...we were running down the hall ways of the hospital and he was just laughing hard and standing up in his chair. All the Peds nurses are so amazed at how good he looks and they are happy for him.I have started him on Tobi nebs I had some left from a time he got one dose in and then ended up back in the hospital so I never used them. I am glad I have them now because they are helping with his trach stuff and he is feeling better. Kyle started wearing one hearing aid again the other is broke and he is doing well with it we got away from all that cause he spent his time being sick all the time. I have his pump rate up to 65 and am getting 5 cans of formula in him over a 24 hour time period and he is doing well with it!! Kyle and I went out to eat with friends yesterday and we had a nice time....Thank You! How blessed we are! God Bless, Jena and Kyle UPDATE: 5-10-09 Hi Kyle is doing great! I have upped his tube feeding rate to 50mls pure hour and we will stay at the rate for a few days....Just taking things slow. I need to try to get another can of formula in him each 24 hours so that he gains some weight. We have a appointment with a GI Dr set up. Kyle is coughing some and his secretions are yellow and smell like Pseudomonas so I have some Tobi nebs left yet so I have started him on them. See how he does they should do the job. We are back in Madison cause Ryan is back in the hospital he has pneumonia. I will update his site. Yesterday {5-7} was such a nice day Kyle and I were actually hot driving and I had to turn on the A/C in the van. I brought Ryan to Madison for his stitches to get removed and when he was put in the hospital I had to go home and get Kyle and I stayed home that night and then we left the next day. Kyle and I are back at the RMH and he slept good last night I think we were both really tired. It stormed here for a little bit. All the nurses were glad to see Kyle and happy that he is doing well. God Bless, Jena and Kyle UPDATE: 5-1-09 Hi We are home!!!! We got home tonight {4-30} and it is nice to be home. Kyle loved being home and smiled a lot. It was sad to leave friends we met in Madison.Kyle was released from the hospital on the 29th. He is only on tube feeds in the J tube and venting the G tube and his med's. I was not bringing him home on TPN. I told them I am sick of being responsible for all of that and ending up back in the hospital and I am not a nurse or Dr. so they took him off TPN and took out the PICC I was glad to see it go. We are back to normal Kyle can wear his coat with both arms in and we can change his shirt without worrying about the PICC. It's so nice not to have to drag that back pack around and change all that "stuff" every night. But most of all worry about him getting a infection from the PICC. While I was in Madison our dog, Snickers, got sick again and so we had to make the decision to have her put to sleep. She was 13...It's too hard to loose a pet that you have had for that long...I don't think I want anymore. When we left Madison the traffic was NUTS! Kyle laughed. It was a nice day. Please continue to pray for Kyle that he continues to be healthy and his bowels work normal. It's so nice to see him happy oh and that flat stomach that the surgery resident said would never be back...Guess what?? It's Back! What a beautiful site to see. God Bless, Jena and Kyle UPDATE: 4-27-09 Hi, Yesterday they Started to feed Kyle again and today he is up to 20mls a hour but there is some white stuff in his vent bag from his stomach...Please pray it is not backing up again..he is still in a great mood, laughing and so happy! He is still on TPN and still getting his antibiotic Zosen. He has some great nurses. Please pray Kyle can handle all his feeds. God Bless, Jena and Kyle UPDATE: 4-24-09 Hi, Yesterday they tried to feed Kyle his formula. They started at 10mls but soon he started dumping out green stuff mixed with formula I could see the formula in his Farrell bag. So they stopped the feeds. It is a little sad but the surgeons said they think that his bowels just aren't ready after surgery and they will try again today if he looks good he did need some pain med's but over all he looked great and was laughing and smiling. I was feeling bad cause I didn't get to spend much time with him yesterday..it was a Ryan day..he needed a lot done. Maybe today we can get Kyle up in his chair and they said we might be able to walk over and see Ryan. Kyle will like that. God Bless, Jena and Kyle UPDATE: 4-23-09 Hi, PRAISE GOD! Kyle is looking so good....I mean he has a ways to go but SO much better then before surgery...I want to cry HAPPY tears this time..It feels so good! First we were moved to the transplant floor but now he has been moved to F6 surgical floor. Today he had to have a blood transfusion and since they said he is the size of a peds person he can't have the adult dose so they will recheck it in the morning and see if he needs more blood. He is getting a lot of supplements and fluid so he is puffy but they said that should go away in a couple of days. He has some pain med's today but has done very good with not a lot. He was even laughing today. He has color back and a sparkle in his eyes...I am so grateful!! The floor he is moved too is great! The nurses take such great care of him he always looks comfortable and clean. AND they know how to care for a trach! They are nice to me and they are happy. The floor doesn't smell and isn't cluttered. There are signs on his door of what he needs done and above his bed. I think the nurses on the other floor were just so frustrated cause nothing was being done to help Kyle. I am feeling guilty tonight as I didn't get to see Kyle much today because Ryan had to go in for emergency surgery. The update will be in his page. God Bless, Jena and Kyle UPDATE: 4-19-09 KYLE Kyle just went to surgery....he has infection in his bowels and looks like some might have died. They may have to remove a lot and then he will have to have a bag. His tempature was 104.9. They have him packed in ice. He is in so much pain. PLEASE PRAY FOR KYLE Thank You, Jena UPDATE: 2:45 PM Hi PRAISE GOD!!!! Kyle is out of surgery at 2:00AM on 4-19-09 and the best that could have happened did!! A portion of his small bowel twisted on itself and died so they removed it but he still has plenty of small bowel left to function normal. AMEN! So no bag no large intestine removal...I am so grateful to God for healing Kyle thru the surgeons hands!! They said he will get worse before better and then get better and they said he should feel MUCH better. They said this could have been going on for awhile. He will be moved to a different floor but I am not sure which one yet. God Bless, Jena UPDATE: 4-18-09 PM UPDATE: Hi, Kyle is very sick tonight....In much pain,stomach distended and rock hard...PLEASE PRAY for my Kyle! He is in so much pain he is shivering his heart rate is up high he is pale..no color... his lips are even pale... he has a 102 temp. They think that stool is backing up into his stomach he is going for a CT scan tonight. He has had many blood tests and x-rays done. He had to have a Femoral Artery blood draw...Very painful for him! I just lightly touch his stomach and he gasps in pain. Morphine is not helping much. He cannot have anymore Toradol cause he can only be on that for 5 days because it causes problems with your GI and kidney's. When he goes to CT they are sending a SOS nurse along to watch over him in case something goes wrong. PLEASE PRAY! God Bless Jena and Kyle Hi Well we had a meeting with Kyle's Dr's and surgery and internal medicine. Yeah! {sarcastic} loads of fun that was! Surgery did all the talking the other ones said nothing.Neurosurgery wanted to be there to talk about his baclofen pump and his intestines I found out later they didn't want her there ...wonder why?? So I told Neurosurg. to just fill his pump with saline. The Dr's were also suppose to put a note in Kyle's chart on what they wanted Neurosurg. to do Guess What they didn't! UGH. Surgery basically gave me two choices One I can take Kyle home on TPN and mess around with the tube feeds but they said he will not live long on TPN or I can leave him in the hospital and let her do her job and trust her. Hummmm what a choice! I choose to stay for one thing I am NOT a Dr and I am so tired of trying to do all of this from home and always ending up back here.They also have pain med's at their finger tips I don't...not the kind he needs. So she wants to feed him...Okay but what if he starts pain again she said then call me and I will look at him. I like her she is very nice but the very passive attitude makes me nervous. She says she has a medically needy child and she knows how I feel but I wonder has she been through the same thing 10 times?? with no answers All I know is her child got well. So they start Kyle at 10mls pedilyte I knew that would go okay then they started his formula and bumped him up to 20mls when they told me the day before they would go to 15mls. So I decided I would wait and see how this plays out....AGAIN. Kyle was not feeling well yesterday I could tell he just wasn't right and didn't smile like he does. Then he had dark green bile out of his stomach and when that starts usually he is going to get sick again, his stomach is big and firmer so I am worried...is the Dr??? Nope..she says he is fine WHAT??? One thing I have to say is she will sit and talk and explain things but I told her that I have this feeling there is something but I'm not a Dr so I have no idea what but I just have a feeling about something is wrong in there. They tell me "Mom knows best" but that's where that comment ends. Then she says she wants him to go home on TPN,feeds and I could slowly take down his TPN and increase his feeds and do this and that...and I said that's too much because obviously I am not doing something right because we always end up back here and I was red faced and so close to crying...She said she would write out instructions clearly on what to do before I panic...again WHAT???? I told her for one thing I don't panic...I wait a couple days before I bring him in and I try to get things going myself and one time I waited too long and he was severely dehydrated and was peeing blood...what about pain? I'm suppose to sit there and watch him in pain? If anyone has ever had a bowel obstruction you know how painful that is. She didn't say much except that so far he is fine and he needs to dump out 500cc or more of bile..well when he gets sick he dumps much more out of G and J. I told her that we always get kicked out of here and then end up right back she said we can stay until he gets better I just thought you wanted to go home...see put it back on me...Of course I want to go home but I want to take a healed child home and not have to come back. She did say that Kyle is a child he is a small guy and mentally too. That's why the TPN will be hard on his liver. Then I hear from others that the general med Dr's and want him to have surgery but surgery won't here's me and Kyle right in the middle...Then I hear they are thinking of transferring him back to Peds...WHAT???? we were dumped by peds UGH! The surgeon did say that she talked to the peds surgery and they feel he don't need surgery and I said of course they would say that cause they didn't do nothing for him the 9 times we were there. I told here they also told me that when they do a CT on Kyle they can't see everything cause the light reflects off his rods in his back...so would if you are missing something??? she said surgery would set him back a month well we have been set back a year! with all of this going on. I asked her what about all the water I have to give him because of his kidney stones and his Potassium Citrate? She said she only knows about the bowels. They are still trying to find a GI Dr. Maybe I should go another place but then starting all over again and loosing possibly another year....I don't know. I keep praying and have faith...I will not give up even thou it gets so hard. PLEASE PRAY FOR KYLE Also please pray for a little girl and all involved we know who was burned in a house fire. God Bless. Jena and Kyle UPDATE: 4-14-09 Hi, Kyle is sick again. What else is new right?? I feel anger creeping up on me and I don't like it but yet I have a hard time stopping it..UGH! I hate this...We are still in the hospital and the Dr's were starting to feed Kyle very slow...we started at 10mls then went to 20mls and he was doing okay still distended but soft and okay...I didn't update much because it was same ol stuff each day We did have a firm talk with one of the Dr's. and we let her know how frustrated we have become and how hard it is on everyone. I don't think they look at the whole picture they only look at his stomach...We asked her how they can just leave him lay there time after time in pain and not do nothing?? We asked her why all the things that can be done here and you can't help Kyle?? We were all pretty frustrated after we were done but ended on a okay note....sorta speak. I kept telling them Sat. and Sun. that Kyle isn't smiling like he was. That he looked "okay not"good" like everyone was trying to say. I was very worried about being pushed out of here to early again and then you have one Dr. telling you one thing and another Dr. telling you something else...What happened to our health care??? So this morning I have been up since 4 AM..Thank You Ryan! and so we were by Kyle early...I walk in his room and he is grinding his teeth so loud OMGosh! I immediately feel his stomach...hard and huge AGAIN...he is sticking his tongue out, grinding teeth, red flushed...I have never heard him grind so hard. I call his nurse who knows nothing the night nurse told her nothing OMG how long has this been going on??? So I tell her he needs pain med's and Zofran because now he has started to gag really bad....So she called the Dr. and they put drain bags on and gave him Zofran, Morphine an Toradal so he is sleeping now and his heart rate is low again...at least he is out of pain for awhile anyway...I thought it was funny on Sunday they stopped his feeds but they said they were going to get a x-ray so I thought that was why and of course the nurses didn't know why they just follow the orders. PLEASE PRAY FOR KYLE Thank You God Bless, Jena and Kyle UPDATE: 4-7-09 Hi, Can you believe it has been a year since we have been dealing with these bowel issues and I say 'issues' cause no one is really sure if they are obstructions or pseudo obstructions...Well it was a slow week end nothing really went on as far as Kyle goes..for me thou it was great..my friends took me out to eat and made a meal for me. All I can say is Thank you! I did talk to the Dr today and she said he was getting more fluid cause he was still putting out a lot of fluid. He is getting his TPN and surgery will see him tomorrow and maybe GI..hummmmmm???? wonder who that will be???? God Bless, Jena and Kyle UPDATE: 4-5-09 Hi, On March 28th Kyle started to get sick...I knew but didn't want to know we were headed back to the hospital I tried all I could do at home first with no luck and Kyle kept getting sicker so I called our clinic to get a blood draw and abdomen x-ray to check for a PICC line infection and or bowel obstruction. I waited most of the day and did not hear from them I called still did not hear from the Dr so I took Kyle to the ER and could kick myself why I didn't do it sooner instead of waiting and the thing is the clinic knows the trouble he has they get reports...I just didn't want to have to wait in there ER for hours! While we waited in the waiting room for a hour we finally get in I was praying for a seizure cause you get in fast without questions but no such luck. They do a X-ray and sure enough he has ANOTHER obstruction UGH!! Number 9! This time he did not have a distended stomach it was flat but had all the other symptoms...So he gets a ambulance ride to Madison to adults where the adult GI Dr dumps us! Can you believe it??? It was hard enough when the Peds GI did it and now the adults..where do you go from there?? Nobody cares! They are still working on finding a GI Dr that will follow Kyle..Are we that bad?? We were home 3 days! They did a CT here and found a blockage and were unsure as to wait it out or do surgery...They thought he had Pancrientitis because his labs were up but when they did the CT his Pancreas looked fine. Thought he might have a stone. His seizure med can cause them just like they caused his kidney stones...I think we really want to get off Topamax. His liver numbers are up too and they don't know why...One thing that is always in common with these obstructions is his Potassium drops and his did so he has been getting that everyday. They have him on suction on his G-Tube all the time and a Farrell bag on his J-Tube all the time he has been getting tons of bile out both. They were giving him Miralax every 4 hours in the rectal tube and his stomach began getting distended , remember it was flat when we came, It got huge and hard as a rock and Kyle was in severe pain he needed Morphine. I finally told them to stop giving him Miralax he is going to explode something is going to give and once they did his stomach has come down and soft ...until today {4-4} They started the TPN last night and today his stomach is bigger and harder then yesterday...Surgery was in and were talking about maybe taking him to surgery to see what is wrong but they will wait until he is over this first. If they decide to do it...Please PRAY they can help...That God heals Kyle through their hands. As you know TPN is not the way to get nutrition and there are risks with it..Please pray that Kyle will get back to his base line normal self...Where he can eat , laugh, cry and live without pain everyday...Well it is the week end not much going on around here..I have been kept sane by my friends that I am so lucky to have. Please pray for Kyle and his Dr's... God Bless, Jena and Kyle UPDATE: 3-31-09 Hi, We are home!! We got home on Thursday night or Friday early. We got home at 1:30am. I just didn't want to stay there anymore and wanted to get home before something else went wrong. Kyle is doing great. He is still on TPN all the time and we are still turning down his baclofen pump....he is at 90 right now and we have 2 more times to turn it down and then will fill with saline. Then we will see if the baclofen has anything to do with his Pseudo-Obstructions. Maybe he needs his spasticity to keep his bowels moving?? I don't know. I guess then these Drs will all have the answers to the question of baclofen and bowels. After we fill with saline we will start his feeds again to see if he gets any obstructions, One thing I did notice is he is more alert the NP noticed that right away, She said I could give him Clonazapam 3 times a day if he gets too tight,,,I can see and feel he is, He is 'standing' up in his chair again and he is making movements he us to make that I had forgotten about he is doing more tongue thrusting, We will just have to see......He is doing much better from his gland infection his face is no longer swelled and he has no more pain. So now our goal is to stay home for a long time except for Dr appointments! God Bless, Jena and Kyle UPDATE on Kyle After I wrote this Kyle started to have bowel problems again...He is in pain, gagging, flushing, lump on Left side. Please pray he gets well and we don't end up back to the hospital we have only been home 3 days. I will call the Dr. on Monday. I was up till 2am with him last night. He is not eating only TPN so I don't understand. UPDATE: 3-28-09 Hi, Kyle is doing better from his infection. He don't have a infection in his PICC line...AMEN! The ER Dr called me today to ask how Kyle was doing and was very happy the swelling went down and he was feeling better...He is a very nice Dr. We have had him before when we have been here in Madison and had to 'use' the ER. We are still here .....Were planning on going home but Ryan ended up in the hospital today...... God Bless, Jena and Kyle UPDATE: 3-25-09 Well we were going home today {24th} but last night when we were visiting our friends in the hospital she said she thought Kyle's side of face and neck looked swelled up and so did I then he looked peaked so I took his temp ...he had a fever...Ugh! So I waited took it a little later and it was higher so I took him to the ER and they decided to do a head/neck CT scan and his Parotid Gland is infected...so IV antibiotics, Tylenol and IB they did not want to give him any narcotics because of his bowel issues...I was in agreement with that! He did not have to stay and we will give the rest of his antibiotic through his G-Tube...He is still in pain and looks pale...poor guy! What's next Kyle?? Maybe I shouldn't ask that! We got back to the RMH at 3am Ryan did really well. I did call and talk to ENT and Dr said it was normal to get one after the 'spit gland' surgery. The antibiotic should fix things...good! Kyle got his G-J Tube changed yesterday too and that went well as far as I know I am not allowed in there while they do that. I did ask about a button instead of a tube and next time he gets changed they are going to have a button ordered for him. I hope they remember to have it ...I will have to call ahead of time and make sure. Kyle also seen Neurosurgery and had his pump turned down to 110 and now has about 3 more times before it is as low as it can go and then she will fill it with saline and run it as low as possible...guess the pump doesn't like to be turned off. He is getting tighter, pushing up in his chair again, tongue thrusting. We are getting ready to go home tomorrow! God Bless, Jena and Kyle UPDATE: 3-21-09 Hi,, Today was a okay day....we are not home yet Kyle has a appointment on March 23 for his G-J-Tube change and if all goes well we will leave either Monday or Tuesday Ryan has a appointment too so not sure how long they will last and then I will have to pack the van and clean the room. Kyle is looking good and smiling and laughing! WAY TO GO KYLE! Our friends little boy is in the hospital with a nasty virus please pray for him...We went to see them today and one of the social workers at the hospital seen me and asked me to talk with him. He is a very nice man...We had him when Ryan first got his trach he helped us through everything that was new and overwhelming. So turns out one of the child life people had told him that Peds GI dumped us and what a hard time I was having with it all...he is not happy and he said he is big into transitioning the right way and that was not the right way to do things. He wants me to talk to patient relations about it all. He kept saying how sorry he was and gave me a hug...Finally I feel like someone understands how I feel....It made my day seem a little better. I also explained to him how when Kyle turns 21 we will not be able to stay at the Ronald McDonald House anymore....only if Ryan is in the hospital .....so there was much more taken away then just GI Dr.'s. It is hard to take that step into adult world when Kyle will always be a child the only thing adult about him is his age....Just is not fair and whoever made this rule for special needs kids is a idiot! So if we continue to come to Madison for GI cares we would have to stay in a motel...we can't afford that...so this social worker called about housing well they have reduced rates in hotels if you have someone at the hospital we still can't afford that...so he said they have hospitality housing but guess where? In the motel we got kicked out of 3 years ago! When Ryan was fighting for his life and they said Kyle wet the bed and he did not I always put 3 attends on him and chuxs under him . I always wanted to go after them for discriminating against a person with a disability but I was too worried about Ryan and once again this big chain got away with something ...again. Can my life get anymore complicated??!! So I explained that whole story to him and he is going to check into that....He also said by May when we come to trach clinic he will have things in order and matched up for Kyle to begin to transition into adult care for Pulmonary, ENT,and Ortho but we will still have till Jan. 2010 to see Peds. Please pray for us as we step into the unknown life of adult care where I have heard the Dr's do not do as well with special needs people....Just what I wanted to hear! Kyle is getting stiffer as his pump is being turned down...We are at 130 and will turn down more on Monday. God Bless, Jena and Kyle ADDED: 1-23-06 Condition=HIE{Hypoxic Ischemic Encephalopathy} at birth with severe SQCP, Seizure Disorder, Severe arthritis of hips and back,  Lung Issues,  Dysphasia,  Non verbal,  developmentally delayed,GERD, 100% G-Tube fed, Glasses, Raynauds' Disease, Bilateral BTE Hearing Aids, wrist splints, AFO's, PM Night Knee Splints, Wheel Chair full time, The Vest Air Way Clarence System, Mouth and Nasal Suctioning every day, Stander and Walker. Walks  In school with PT when wants too and has taken 65 steps! Learned to sign "Yes" and "No" And knows some signs. If you would like to add a page for your child, click on "Add A Child" below. Please be aware that once a child's page is added to this website the information becomes public. Please keep this in mind when posting information. It is recommended that you DO NOT post your full names or addresses unless using a post office box. We can not be responsible for who views these pages as they are open to the general public. We suggest a password protected page for optimum privacy. Need information? Contact: Elizabeth Ricard, President Children of the Promise, Inc. 405 Shady Pine Lane Newcomb, TN 37819 866-565-KIDS president@childrenofpromise.net JOIN FOR DAILY UPDATES Please join thousands of prayer warriors around the world as we pray for our children. Simply send us an email with subscribe as the subject. Children of the Promise is a 501(c)3 non-profit organization. This website's purpose is to provide pages for children so that others may learn of their needs and pray for them as well as provide a central location where family and friends can receive updates on children and offer encouragement to their parents. You will find no solicitation for funds or support of any kind other than prayer and encouragement. We appreciate your prayers and look to the Lord to provide our daily needs. We Believe About Us Our Beginnings Our Mission Coloring Books Our Children Add A Child Prayer Scriptures Healing Scriptures Promise Scriptures Awards Our Board Contact Us Tax Exempt Info Privacy Statement Memorials