lori
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Posts: 16
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Post by lori on Jan 23, 2005 19:26:55 GMT
Hi everyone my daughter Madison is back in Children's hospital in Vancouver. A couple of months ago she was started on ACTH for her seizures. She has not had any seizures since 3 days after starting the medication.. She has been very irritable during the treatment but over the past 2 weeks she has been crying all of the time. Almost like she is incosolable.. I brought her to the hospital a week and a half ago and they did an x-ray on her bellly and saw that she was full of stool. She has had many enemas, something called go lightly through her g-tube and many more x-rays of her belly. They also did a contrast enema and told me that she does not have an obstructed bowel.. She has something called ILEUS. It's a fancey term they use when the bowel does not work propoerly. Her bowel loops are very dilated and this is causing her alot of pain.. Has anyone eles kids been diagnosed with this. Her tone is very poor and she is hypotonic therefore they say she has a hard time pushing her stool out. They started her on a drug called gabapentin which is used for seizure but is also used for long term pain relief. so now she will sleep for up to 4 hours when she gets this medication. She is worse now then when she came in. They have a NG- Tube down her nose and that is always hooked up to intermitent suction and her g-tube is on open drainage. They are trying to decompress her bowel. Ileus is usally caused by an underlying condition but all of Madison blood work has come back negative for infection so they do not know the cause of this. A couple of days ago they started her on TPN. Total parenternal nutrition through her IV.. They can only do TPN through the veins in her hands for up to a week because it is very difficult on the veins. Yesterday her IV went interstitial after 9 days of the IV being in and 2 days of TPN.She ended up getting a brun on her arm from the IV and now they have started her on an antibiotic called Vancomycin.. To complicate matters she is MRSA positive. This is a superbug she picked up in the NICU when she was a real preemie. They restarted her IV last night in the other arm and by this morning the new IV had gone interstitial too. The IV nurse came back and this was one of the best IV nurses and managed to get it started in her foot. Problem is Madisons veins are shot. She has nothing left. She was born at 24 weeks and has been in the hospital most of her life. She has been poked alot and her veins are gone. They did not restart the Tpn in the foot as the vein is very small and it was the last spot possible to start the IV and they do not want this one to blow.. They have started her on pedialite through her g-tube and have her on an IV solution. Time will tell if her bowels can handle the pedialite. If this does not work they will need to take her to the operating room and insert a central line into the larger vein in her neck and the Dr told me that with a baby like this that is already immune comprimised they can get an infection in the blood easily which in turn can make them septic and they will die. He said with proper treatment over the next week if things do not get better this could be terminal. As eventually if no treatment works and the child gets an infection and the child gets an infection from the central line they can die. I will not know for sure what is going on for about another week. Only time will tell what the future holds for litlle Madison. She is only 10 1/2 months old and I am not ready to let her go yet.. her heart and lungs are working just fine.
I am a single mother and sometimes I feel like I am going to have a nervous breakdown Madison cries most of the time and only sleeps for a couple of hours with the chlorohydrate they give her at night.. I have asked that they switch her gabapentin to nighttime as she sleeps longer. The government will only pay for 10 hours a week respite which means I only get one night off a week. Thank god I have my mother who does one overnight shift a week. so I actually get 2 evenings off. The ministry is trying to tell me I need to use my respite money which is $225 a month. That will get me 2 overnight shifts and if madison is at the hospital for an extended period of time 2 nights is peanuts. I am at my witt's end with them and if they do not give me more help I will take it to the media. We all want what is best for our children. and I am not superwomen. I cannot run off of no sleep and be strong for my child. Right now is a very difficult time for me and any information would be appreciated.
Lori Taylor- Mom to Madison Taylor born at 24 weeks-1 pound 6 ounces with Lissencephaly, seizures-under control with the acth, has a g-tube, nissen fundoplication, bilateral optic atrophy, hearing impaired-Vancouver British Columbia.
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pam
New Member
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Post by pam on Feb 9, 2005 3:50:08 GMT
Hi Lori, I wish I would have found this site years ago, but there must be a reason I was looking tonight and found this. My daughters name was Macenzi and she was born with Pachygyric Lissencephaly on May 29, 1998. However, she wasn't diagnosed until 5 days later. There will be many many unanswered questions to the many illnesses that your daughter Madison will endure. When Macenzi was about 6 months old, she began to cry uncontrollably for hours and for days with no apparent reason. She to as we found out was full of stool, caused from one of the many meds that she was taking. After a doctor visit and an enema she seemed somewhat better for a day or so until the crying started again. The doctor and I both thought that maybe it was the formula and we should try another type, which I did, with no relief. So I took her off formula all together and put her on 2% milk. Believe it or not the crying stopped. Her body just couldn't handle the strong formula any longer, and believe me I tried all kinds. I also put her on a small daily dose of Miralax, with a doctors prescription, which continued to keep her bowels moving correctly. The doctor wasn't to happy with me taking her off of the formula, but as long as my daughter was comfortable that's all that mattered. Eventually, the doctor agreed as she saw how much more relaxed Macenzi had become and most importantly the crying had stopped. Lori you have a very long road ahead of you, but it is a road you'll never forget. My Macenzi passed away in April 2004, and there isn't a day that passes that I don't wish she were still here even with all the struggles that went with it. All the lenghty hospital stays, clinic visits, therapist visits, hourly med times and feedings she made it all worth while. These kids truly are ANGELS FROM GOD. I wish you nothing but the best, and I hope I can help again if I can. Take Care!! Pam
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lori
New Member
Posts: 16
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Post by lori on Mar 5, 2005 17:32:31 GMT
Thankyou so much for the reply. You are the only person that replied to my post. It seems that nobody knows what Ileus is. Madison ended up spending 6 and a half weeks in the hospital this time. Ended up on TPN twice but finally they got her on a forumla called Enfalac pregestimil. It is a pre-digested formula. And she seems to tolerating this. I cannot put her on milk as she was 4 months premature and is far to small she only weighs 14 pounds and she is a year old. She is also on a laxative called go-lightly or peg solution. so for now I will keep my fingers crossed. Your daughter truly sounded like a beautiful little girl. I am so sorry she passed away. My thoughts are with you. I am so scared of that day as Madison spends so much time in the hospital and I am not sure how much longer she will be here. Thankyou for your reply. I appreciate any information I can get.
Sincerely,
Lori Taylor- mom to Madison Taylor-lissencephaly, g-tube fed, fundoplication surgery, bilateral atrophy, seizures. Vancouver BC
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Post by michelle major on Aug 31, 2010 4:48:35 GMT
my daughter is 5 and was just diagnosed with ileus and she was in the hosp. for one night and they sent her home and told me to give her miralax and its been two days and no bowel movement, she is weak,tired,no appetite, has abdominal pain all day and is miserable. im worried that she might need to go back. her name is Haiven and is normally a happy playful child and now she wont even walk. she just wants to lay around all day and be held, and she wont eat. she is so thin now you can see alll her bones.
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