6/23/2010
Today's doctor visit started with a cystogram (which is when they put dye into the body so they can see it on the x-ray). Missy was very nervous with the machine over her but all in all did really well. The tech. told me that the fluid was going up into her ureter and the bottom of the right kidney. This really worried me because that is what was happening before the surgery and that is why we had the surgery in the first place. We had to wait 2 hours in order to see her doctor, so I was really stressing that full 2 hours. When we got into see her doctor he said that everything looked good and that he thought that the fluid going into the kidney's was just because of the swelling due to surgery and that it should go away with time but that he would look at everything again in 2 months to make sure. He wasn't worried at all. He then took out her last tube and showed me how to cath through her stoma. Missy was so excited to not have anymore tubes. She even told the doctor that she loved him. She is so darn cute sometimes. Made us smile. We will see how the cathing goes at home for awhile (hopefully there will be no complications). She will also be on a preventative antibiotic for about a month because when you first start putting caths in a new larger bladder it sometimes may cause infection. Anyway, so YAY! Today was a good day! We are very excited that the tubes are gone and that we don't have to drag them around anymore. At least Missy can now get around a lot easier and be a little more like herself.
Wednesday, June 23, 2010
Tuesday, June 22, 2010
Play dates anyone?
6/22/2010
Missy is doing great and I would love to set up some play dates for Missy these next couple weeks before she goes back to school. We also would love some visitors. If anyone is interested please email me at ccowley@comcast.net
Missy is doing great and I would love to set up some play dates for Missy these next couple weeks before she goes back to school. We also would love some visitors. If anyone is interested please email me at ccowley@comcast.net
First real outting
6/19/2010
We have tried to go out and about a couple of times with Missy since being home after her surgery but she just never felt good enough. We tried to go out to eat but once we received our food Missy complained of not feeling well so we packed up our food and left. Not until today have we been successful. I debated whether or not we would go to the Osmond Reunion all week, right up until 9am this morning. Missy seemed to be doing a ton better plus I thought it might do her some good to see some of her relatives and get out of the house. She had been stuck in the house for 2 weeks now. I told her over and over again on the way to the reunion that she couldn't get out of her wheelchair or play on the play ground because she had her tube. Even though she told me she would be OK, I didn't really believe her. To my surprise she didn't ask me once to get out of her wheelchair or to play on the playground. They had so much to do at the reunion to keep her occupied and her mind off other things. It just warmed my heart to see her having so much fun with her cousins. I am so glad we went and were able to see everyone. It was very much needed for the both of us.
One less tube
6/18/2010
So this morning as I was getting Missy out of her wheelchair and into the car to go to the grocery store, her suprapubic tube got caught on the brake of her wheelchair and I ended up pulling it right out of her stomach. Needless to say, I FREAKED OUT! I put Missy in the car and went straight to her doctor's office at Primary's. On the way there I kept trying to call the doctor but kept getting voicemail. The nurse finally called me back when I was only 10 minutes away and said that it wasn't a big deal and to just unplug her stoma and let it drain into her diaper. I told her that since I was almost there that I would feel better if they just took a look at everything. Missy was actually able to see her doctor. He said that even though I thought it looked bad that she was actually healing quit nicely and that everything looked good. Thank goodness. He hooked up the drainage bag to the catheter in the stoma and said that he would see us in a few days on the 23rd for post op appointment and her cystogram test. What a relief! I couldn't tell you how stressed I was at thinking I hurt or did damage to my own child. The good thing about it was that Missy never felt a thing and didn't even know that anything was wrong. I guess that is one good thing about not being able to feel below your chest. She just knew that her tube fell out and needed to be fix. Although she made sure she called grandma to tell her all about it.
So this morning as I was getting Missy out of her wheelchair and into the car to go to the grocery store, her suprapubic tube got caught on the brake of her wheelchair and I ended up pulling it right out of her stomach. Needless to say, I FREAKED OUT! I put Missy in the car and went straight to her doctor's office at Primary's. On the way there I kept trying to call the doctor but kept getting voicemail. The nurse finally called me back when I was only 10 minutes away and said that it wasn't a big deal and to just unplug her stoma and let it drain into her diaper. I told her that since I was almost there that I would feel better if they just took a look at everything. Missy was actually able to see her doctor. He said that even though I thought it looked bad that she was actually healing quit nicely and that everything looked good. Thank goodness. He hooked up the drainage bag to the catheter in the stoma and said that he would see us in a few days on the 23rd for post op appointment and her cystogram test. What a relief! I couldn't tell you how stressed I was at thinking I hurt or did damage to my own child. The good thing about it was that Missy never felt a thing and didn't even know that anything was wrong. I guess that is one good thing about not being able to feel below your chest. She just knew that her tube fell out and needed to be fix. Although she made sure she called grandma to tell her all about it.
Grandma goes home
6/14/2010
My mom flew home today. So sad. We are going to miss her. Missy couldn't understand why she had to go home. I think she thought that she was going to live with us or something. My mom kept telling her that grandpa missed her and that she had to go home. Missy kept saying why, typical 4 year old response. She really loved having her around everyday and so did we. My mom was such a huge help with everything. We couldn't have gone through everything with Missy and it go as smoothly as it did without her. Thank you so much mom for all you do and do for us. Also another big thanks to my dad for letting her stay with us as long as she did. I know it must have been a long two weeks without her. We love you both so much and I am truly blessed to have parents like you.
After dropping grandma off at the airport, I called the urologist office to make an appointment like the ER doctor's advised us to do. When talking with the nurse (because the doctor wasn't in) she said that there was no need for the doctor to see her and that it could wait for her after surgery check up appointment. So for now Missy will just take the antibiotics, lay low for a while and wait for her appointment on the 23rd.
My mom flew home today. So sad. We are going to miss her. Missy couldn't understand why she had to go home. I think she thought that she was going to live with us or something. My mom kept telling her that grandpa missed her and that she had to go home. Missy kept saying why, typical 4 year old response. She really loved having her around everyday and so did we. My mom was such a huge help with everything. We couldn't have gone through everything with Missy and it go as smoothly as it did without her. Thank you so much mom for all you do and do for us. Also another big thanks to my dad for letting her stay with us as long as she did. I know it must have been a long two weeks without her. We love you both so much and I am truly blessed to have parents like you.
After dropping grandma off at the airport, I called the urologist office to make an appointment like the ER doctor's advised us to do. When talking with the nurse (because the doctor wasn't in) she said that there was no need for the doctor to see her and that it could wait for her after surgery check up appointment. So for now Missy will just take the antibiotics, lay low for a while and wait for her appointment on the 23rd.
Saturday, June 12, 2010
Wake up call
6/12/2010
We had a wake up call at 1:00 a.m. this morning. Missy woke up with a fever of 104.5. Per the doctor's instruction we took her straight to the ER. After a urine test and X-ray we were able to find out that Missy had another UTI. Missy heart rate was also elevated which meant that she was dehydrated. We were not able to leave the hospital until she took in some fluids and her heart rate went down. Finally at 5:00 a.m. we were able to go home. She was given some antibiotics for the next 10 days. We also have to go back to the urologist this coming Monday.
Here is a picture of Missy at the hospital with a therapy dog. A different dog visited daily.
We had a wake up call at 1:00 a.m. this morning. Missy woke up with a fever of 104.5. Per the doctor's instruction we took her straight to the ER. After a urine test and X-ray we were able to find out that Missy had another UTI. Missy heart rate was also elevated which meant that she was dehydrated. We were not able to leave the hospital until she took in some fluids and her heart rate went down. Finally at 5:00 a.m. we were able to go home. She was given some antibiotics for the next 10 days. We also have to go back to the urologist this coming Monday.
Here is a picture of Missy at the hospital with a therapy dog. A different dog visited daily.
Saturday, June 5, 2010
Missy is home!
6/5/2010
Missy is home! She finally had her favorite meal for lunch today, Mac and Cheese. She was so excited to eat real food and the best thing of all was she was able to keep it all down. Missy did much better then what the doctor's expected. They kept saying that they didn't want to rush things along and wanted to take their time because this was such a huge surgery for such a little girl. (they normally don't preform this surgery on children). We left the hospital at 3:30 today, Missy still has two of the tubes in place. One is to drain the bladder and the other is her stoma (where she will cath herself in the future). These will both stay in place for the next 2 weeks so that the bladder may heal properly. Then they will show us how to cath her through the new stoma. If it works out like they plan then on the 3rd week they will remove the bladder drainage tube. Hopefully by this time everything will have healed and functioning correctly.
Missy is home! She finally had her favorite meal for lunch today, Mac and Cheese. She was so excited to eat real food and the best thing of all was she was able to keep it all down. Missy did much better then what the doctor's expected. They kept saying that they didn't want to rush things along and wanted to take their time because this was such a huge surgery for such a little girl. (they normally don't preform this surgery on children). We left the hospital at 3:30 today, Missy still has two of the tubes in place. One is to drain the bladder and the other is her stoma (where she will cath herself in the future). These will both stay in place for the next 2 weeks so that the bladder may heal properly. Then they will show us how to cath her through the new stoma. If it works out like they plan then on the 3rd week they will remove the bladder drainage tube. Hopefully by this time everything will have healed and functioning correctly.
REAL food
6/5/2010
This morning Missy was actually able to eat REAL food! For breakfast she is able to eat anything on the soft diet list. Her first pick "Oatmeal". She loved it. If all goes well and everything stays down then she can have what ever she wants for lunch. Then if all goes well with lunch, they say we may be able to leave the hospital later this afternoon. We are crossing our fingers. We asked Missy if she was ready to go home today and she said no she wanted to stay. I was afraid this was going to happen. With all the attention she has been getting from all the doctor's, nurses, visitors, phone calls and presents, I don't blame her. Primary Children's has really made an awful situation into a more comfortable and memorable experience for her.
This morning Missy was actually able to eat REAL food! For breakfast she is able to eat anything on the soft diet list. Her first pick "Oatmeal". She loved it. If all goes well and everything stays down then she can have what ever she wants for lunch. Then if all goes well with lunch, they say we may be able to leave the hospital later this afternoon. We are crossing our fingers. We asked Missy if she was ready to go home today and she said no she wanted to stay. I was afraid this was going to happen. With all the attention she has been getting from all the doctor's, nurses, visitors, phone calls and presents, I don't blame her. Primary Children's has really made an awful situation into a more comfortable and memorable experience for her.
Friendly visit
The doctor is optimistic about Missy's recovery. She was able to have liquids and she enjoyed her slushy's . The doctor came in and removed one of the tubes from her abdomen. Solid foods hopefully tomorrow. She is going to explode the first time they bring her Mac and cheese. Missy even found a way to enjoy getting her vitals/check ups. She loves to speak in the nurses paging system saying "Beam me up Scotty", "Beam me down Scotty". The people here at Primary Children's are amazing. Missy had a friend Keilani from school drop in to see her, and Missy was elated. She thought is was her birthday. It made her day. We can't thank everyone enough for your thoughts and prayers. They have been heard!
Staying busy
Missy is staying busy. It takes two of us to move her around (one to pull the wagon one to push the her monitors and tubes) but she loves to go outside to the garden and hang out by the waterfall. Primary Children's Hospital has a beautiful garden right out front. She is starting to act a little more like herself today. We were able to go the playroom for music time and do some crafts.We still have to watch what we say, because Missy still can 't have but 2 oz of water/ice per 12 hours. She get her drinks by dunking a toothbrush in a cup of water and putting it in her mouth. She insisted all day she was a princess. She is still very uncomfortable but she tries to ignore it. She loves to get guests.
Wednesday, June 2, 2010
Day after surgery
Missy has been doing pretty good today considering the nightmare she went through yesterday. She's mostly been really sad, uncomfortable and doesn't really know what she wants to make herself feel better. She just knows that she doesn't feel good and that she hurts. Her doctor still doesn't want her to eat or drink anything for the next couple of days or until her bladder wakes back up to make sure everything starts working again before she puts anything through her system. Once the bladder wakes back up they will start her on clear liquids and work their way up to whole foods. Today she needs to get out of bed at least 4 times to take little walks in her wheelchair or wagon. We have one walk down so far. She was pretty much just zoned out most of the time. We will be up at Primary Children's Hospital in Salt Lake for at least one week if not more and I am sure our sweet little Melissa would love some visitor's. Thanks so much to everyone for all your warm thoughts and prayers. Please continue to pray that she may have a speedy recovery. Hopefully she will start feeling herself soon.
Tuesday, June 1, 2010
Just got out of surgery
6/1/2010
Just a quick update. Missy just got back to her room. She was a little lethargic and she stated her a opinion of doctors as not so good. She will not be able to have food or drink for another two to three long days. She also stated her not so good opinion of us "forgetting" her sippy for ice water. She still has her sense of humor and laughed as we joked about her doll.
The surgery was delayed for 5 hours and took right at 4 1/2 hours to complete (expected time was 4-6 hours). The doctor said the surgery went just as expected and he took some time to flush and check her shunt drain.
Just a quick update. Missy just got back to her room. She was a little lethargic and she stated her a opinion of doctors as not so good. She will not be able to have food or drink for another two to three long days. She also stated her not so good opinion of us "forgetting" her sippy for ice water. She still has her sense of humor and laughed as we joked about her doll.
The surgery was delayed for 5 hours and took right at 4 1/2 hours to complete (expected time was 4-6 hours). The doctor said the surgery went just as expected and he took some time to flush and check her shunt drain.
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