Monday, August 30, 2010
Little Update.
We have Jaela's post-op appointment set up for the 7th. That is when we will find out the results of the biopsy. She is still doing pretty well. The doctor said that the dialation of her bum would make it easier for her to poop and that after they do that most kids don't have a problem anymore, well he lied. This makes me VERY nervous! Jaela had her first bowel movement since the procedure this morning. It seems like nothing has changed since before the procedure. She was extremely fussy and clingy all morning. When she went poo she had to struggle so hard. So hard that she threw up everywhere from pushing so hard!! Obviously, if the dialation works for most children and it solves their poo problems and it didn't for her then there's something else wrong. I am just preparding myself to hear the news that she has Hirschsprungs and she will need more surgeries. :( I guess in this time I am just hoping for the best and preparing for the worst.
Friday, August 27, 2010
One step closer...
Jaela had her surgery today! Everything went really well. She doesn't seem to be in a lot of pain at all. We have to have a follow up appointment in a week to get the results of the biopsy and determine what the next step is. We are now one step closer to getting this little girl healthy again!
Tuesday, August 10, 2010
1st visit with the Surgeon
We had our first appointment with the surgeon today. He is strongly leaning towards Hirschsprungs Disease. Friday August 27th Jaela will be put to sleep to have a biopsy done on her large intestines to see if it is indeed Hirschsprungs. She will also have a procedure done that stretches her butt lol as crazy as that sounds, it is supposed to help her with her pooping... I am kind of nervous because it is going to be a rough day. Her procedures arent until 11am so she is not aloud to have anything to eat or drink past 6...how the hell am I going to do that?! I guess we will just have to fight through it because she needs this done so we can get her feeling better!
Wednesday, August 4, 2010
Just waiting...
I just got a call from Jaela's pediatrician. They made her an appointment with the pediatric surgeon for next Tuesday the 10th. She said it is very rare for them to have an opening so soon, so we definately lucked out. Let's just hope this baby doesn't decide to come before then! So now we wait untill Tuesday to figure out what the next step is to getting our baby girl better!
We went through another episode of constipation. She didn't go for about 3 days and by the third day she was extremely fussy and restless, she didn't want to sleep at all. She was only taking about one 30 minute nap a day and not going to bed untill about 9 and waking up at 6:30. When she was awake she was extremely clingy, I had to hold her ALL day or she would just sit there and scream. She did finally poop yesterday so she is doing a little better now. I can't wait to get my mei tai from Kell so I can start wearing her when she is that fussy so I can still get stuff done.
We went through another episode of constipation. She didn't go for about 3 days and by the third day she was extremely fussy and restless, she didn't want to sleep at all. She was only taking about one 30 minute nap a day and not going to bed untill about 9 and waking up at 6:30. When she was awake she was extremely clingy, I had to hold her ALL day or she would just sit there and scream. She did finally poop yesterday so she is doing a little better now. I can't wait to get my mei tai from Kell so I can start wearing her when she is that fussy so I can still get stuff done.
Saturday, July 31, 2010
The Journey Begins...
I am going to start with some background information...
Since Jaela was a few months old she started having problems going to the bathroom. She wouldn't go for days on end. We brought it up with her pediatrician and they didn't seem at all concerned, as long as she was going and it wasn't really hard balls of it or anything. Well a few months went buy and it slowly started getting worse and worse. It eventually got to the point to where she was only going about once a week and it was so hard for her to go. She would scream for about a day and half before she actually went and when she did go, she struggled so hard and it would even cause her anus to tear and bleed. I started calling the doctor and they said to try prune juice or apple juice in a bottle once a day. We tried that and had no success. So we tried putting a little bit of either prune juice or karo syrup in every bottle. It helped a little but not enough. I called them back and they said to put her on a strictly high fiber diet. We tried that with no success. When I called them again we made an appointment for later that day. During the appointment the doctor told us to go ahead and give her Mirilax twice a day and ordered some tests to be done, he assured us they were just precaution measures and that both of those tests were testing for something really rare and they were just to get those things out of the way....
A few days after that appointment she got her blood work done. That was not at all fun. She is a chunker so finding her veins were impossible. They probably tried six times to find them with no luck. So they did a heal prick and spent about 45 minutes pushing blood drop by drop out of her heal into viles all while she was screaming and thrashing around. I called the doctor a few days later and the results from the blood test, which was looking for a thyroid problem came back normal so we went ahead and scheduled her berium enima for the next day.
Her enima was no fun at all. They had to put a tube in her butt and squirt this white liquid into her bowels and then take x-rays. While they did this she screamed the entire time. I had Eliza with me also and Eliza was crying because she didn't want sissy to have a boo-boo. While they were taking the x-rays I could see on the screen that there was bulges and then a skinny part. I didn't know what they were looking for so I didn't think anything of it.
They next day we got a call from the nurse at her doctor's office saying that the doctor went over her results and he wanted us to come in as soon as possible to discuss them, my stomach immediately dropped and I knew something was wrong.
Yesterday was her appointment. The doctor explained to us that the radiologist was unsure of the diagnosis. She said it is between her having an extra piece of tissue in her intestine which is causing her to get backed up or it is Hirschsprungs Disease. She said they are leaning towards Hirschsprungs Disease. We were referred to a pediatric surgeon who will look over the x-rays and try to determine if it is in fact HD. If it comes down to it he may have to do a biopsy of that section of her intestines which will call for her to be put to sleep. So now we are playing the waiting game. Just waiting to see the surgeon and then waiting for a definite diagnosis...
I plan to keep this blog fairly active to document Jaela's journey through whatever it is that she has. She is strong and she is a fighter and I know whatever it is, she will get through it!
Since Jaela was a few months old she started having problems going to the bathroom. She wouldn't go for days on end. We brought it up with her pediatrician and they didn't seem at all concerned, as long as she was going and it wasn't really hard balls of it or anything. Well a few months went buy and it slowly started getting worse and worse. It eventually got to the point to where she was only going about once a week and it was so hard for her to go. She would scream for about a day and half before she actually went and when she did go, she struggled so hard and it would even cause her anus to tear and bleed. I started calling the doctor and they said to try prune juice or apple juice in a bottle once a day. We tried that and had no success. So we tried putting a little bit of either prune juice or karo syrup in every bottle. It helped a little but not enough. I called them back and they said to put her on a strictly high fiber diet. We tried that with no success. When I called them again we made an appointment for later that day. During the appointment the doctor told us to go ahead and give her Mirilax twice a day and ordered some tests to be done, he assured us they were just precaution measures and that both of those tests were testing for something really rare and they were just to get those things out of the way....
A few days after that appointment she got her blood work done. That was not at all fun. She is a chunker so finding her veins were impossible. They probably tried six times to find them with no luck. So they did a heal prick and spent about 45 minutes pushing blood drop by drop out of her heal into viles all while she was screaming and thrashing around. I called the doctor a few days later and the results from the blood test, which was looking for a thyroid problem came back normal so we went ahead and scheduled her berium enima for the next day.
Her enima was no fun at all. They had to put a tube in her butt and squirt this white liquid into her bowels and then take x-rays. While they did this she screamed the entire time. I had Eliza with me also and Eliza was crying because she didn't want sissy to have a boo-boo. While they were taking the x-rays I could see on the screen that there was bulges and then a skinny part. I didn't know what they were looking for so I didn't think anything of it.
They next day we got a call from the nurse at her doctor's office saying that the doctor went over her results and he wanted us to come in as soon as possible to discuss them, my stomach immediately dropped and I knew something was wrong.
Yesterday was her appointment. The doctor explained to us that the radiologist was unsure of the diagnosis. She said it is between her having an extra piece of tissue in her intestine which is causing her to get backed up or it is Hirschsprungs Disease. She said they are leaning towards Hirschsprungs Disease. We were referred to a pediatric surgeon who will look over the x-rays and try to determine if it is in fact HD. If it comes down to it he may have to do a biopsy of that section of her intestines which will call for her to be put to sleep. So now we are playing the waiting game. Just waiting to see the surgeon and then waiting for a definite diagnosis...
I plan to keep this blog fairly active to document Jaela's journey through whatever it is that she has. She is strong and she is a fighter and I know whatever it is, she will get through it!
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