- Joined
- Apr 7, 2014
- Messages
- 3
Hello, my grand-daughter Mackenzie has had Crohn's disease since she was 8 and is now 14. She has been struggling with it a lot the last couple of months. She has been on massive amounts of medicines, had multiple scans, lab work, doctor visits and this last week an MR Enterography scan, This scan showed she has so much inflammation in her intestines that her levels are elevated, she has a stricture in her intestines and a partial blockage. She had surgery, found masses but not cancerous, Thank God but she has been admitted since surgery. She has a blockage somewhere, they aren't sure of exact location as of right now. This is not allowing any food to pass her stomach. She vomits with anything other than liquid. They are feeding her a liquid medicine through a NG tube into her stomach through her nose to clean out her intestines that aren't working currently by themselves. She has no bowel sounds. Nothing is functioning in her digestive system currently. She is still hooked up on the meds. They have no idea how long this will take, there is no way to prevent it from happening again. They won't do an invasive open abdominal surgery unless her bowels begin to die. She's still throwing up off and on.
Mackenzie Update*** this is as of today April 2nd. We have been having a ruff few days following discharge from Dell on Wednesday night. Thursday was a doc appt that let us all feeling like there was no direction and even our pediatrician was baffled as to why Mackenzie had been released from the hospital. Friday late night and into Saturday early morning she began vomiting and not able to keep it down. We went to our Pediatricians office again on Saturday morning and with all of her symptoms and issues it was suggested we return to Dell Children’s Hospital. Between Kenzie being upset and not wanting to go back so were our other three girls. I spoke to the doctor for some time and she contacted Dell and asked the GI doctor on call what I could watch for trouble and to bring her in if anything from this list happened. So home we went. Pain was still going and different types of pain, she was having massive headaches, still struggling to keep food down and when she did keep it down it continually would come back up, vomiting and having to swallow the vomit down as it comes up. We went to the motility specialist and her regular GI doctor yesterday.
She also has some issue with her vaginal cavity and uterine cavity collapsing onto her rectal wall pushing one side of the rectum down against the opposite side. She has a GI bleed somewhere but it is minimal is what we were told. She has been burning up internally and having bouts of perfuse sweating without a temp. The doctor said this has to do with her Thyroid and we need to see an Endocrinologist. The motility specialist was only able to spend a few minutes with us because he had to go do a procedure. We are waiting to get an appointment with him but so far our next appointment is April 25th. I was told that there are multiple motility disorders and it will require many tests to figure out what issues we are dealing with. She will most likely need a test study called a Defecography; she will have another Pill cam (she had his when she was diagnosed in 2008). Her nutrition is a major concern and so I was given Amino acid powder medical food to mix with water, and vanilla protein based tube feeding food that I can use in place of milk and put into the mashed potatoes that she is eating. She currently eats approx 3 4 oz servings of mashed potatoes daily. They are starting her on yet another medication that crosses the blood brain barrier and is suppose to trick the brain to send a signal to the stomach to hold the food for a longer period of time. This will hopefully give her body time to absorb some of the nutrients she needs. It is a medication that requires a nap and makes her very sleepy. It will be given as a ½ does in the afternoon and a full dose at night. She had a bunch of lab work done and the results came back today that she is at least maintaining her levels and nothing is alarmingly low. Thank God!
I have dropped off the homebound forms to her High School and hopefully within the next week she will be given 4 hours a week of instruction from one of her teachers.
We are maintaining the best way we know how to and that is with our faith that God will take care of her. We now say in this house she may not be feeling great now, but she will feel better at sometime. We hold strong that she will be healed and these multitudes of issues will be resolved.
Just yesterday, he doctor informed us that there is possible she may have a mass on her brainstem, thus causing most of the problems..
I don't know where to turn, but I feel I am about to loose my mind...I can't bare to think of how my daughter-in-law and son are dealing with this.
God only knows.
Mackenzie Update*** this is as of today April 2nd. We have been having a ruff few days following discharge from Dell on Wednesday night. Thursday was a doc appt that let us all feeling like there was no direction and even our pediatrician was baffled as to why Mackenzie had been released from the hospital. Friday late night and into Saturday early morning she began vomiting and not able to keep it down. We went to our Pediatricians office again on Saturday morning and with all of her symptoms and issues it was suggested we return to Dell Children’s Hospital. Between Kenzie being upset and not wanting to go back so were our other three girls. I spoke to the doctor for some time and she contacted Dell and asked the GI doctor on call what I could watch for trouble and to bring her in if anything from this list happened. So home we went. Pain was still going and different types of pain, she was having massive headaches, still struggling to keep food down and when she did keep it down it continually would come back up, vomiting and having to swallow the vomit down as it comes up. We went to the motility specialist and her regular GI doctor yesterday.
She also has some issue with her vaginal cavity and uterine cavity collapsing onto her rectal wall pushing one side of the rectum down against the opposite side. She has a GI bleed somewhere but it is minimal is what we were told. She has been burning up internally and having bouts of perfuse sweating without a temp. The doctor said this has to do with her Thyroid and we need to see an Endocrinologist. The motility specialist was only able to spend a few minutes with us because he had to go do a procedure. We are waiting to get an appointment with him but so far our next appointment is April 25th. I was told that there are multiple motility disorders and it will require many tests to figure out what issues we are dealing with. She will most likely need a test study called a Defecography; she will have another Pill cam (she had his when she was diagnosed in 2008). Her nutrition is a major concern and so I was given Amino acid powder medical food to mix with water, and vanilla protein based tube feeding food that I can use in place of milk and put into the mashed potatoes that she is eating. She currently eats approx 3 4 oz servings of mashed potatoes daily. They are starting her on yet another medication that crosses the blood brain barrier and is suppose to trick the brain to send a signal to the stomach to hold the food for a longer period of time. This will hopefully give her body time to absorb some of the nutrients she needs. It is a medication that requires a nap and makes her very sleepy. It will be given as a ½ does in the afternoon and a full dose at night. She had a bunch of lab work done and the results came back today that she is at least maintaining her levels and nothing is alarmingly low. Thank God!
I have dropped off the homebound forms to her High School and hopefully within the next week she will be given 4 hours a week of instruction from one of her teachers.
We are maintaining the best way we know how to and that is with our faith that God will take care of her. We now say in this house she may not be feeling great now, but she will feel better at sometime. We hold strong that she will be healed and these multitudes of issues will be resolved.
Just yesterday, he doctor informed us that there is possible she may have a mass on her brainstem, thus causing most of the problems..
I don't know where to turn, but I feel I am about to loose my mind...I can't bare to think of how my daughter-in-law and son are dealing with this.
God only knows.
