Many Steps Back

Many Steps Back

Stephanie’s stay at home was very short lived. She was only home a few weeks and her PICC line broke. She was not actually thriving here with many issues and problems. Without her PICC line we were unable to keep her hydrated and provide essential nutrients for growth. While in hospital; Stephanie got a terrible virus that held her up for a few extra weeks.

She stayed one month in hospital and when she came home she no longer tolerated her GJ tube feeds and is 100% dependent on IV fluids for hydration, nutrition and medications. She is hooked up 24 hours a day at this point and gets several of her meds through her IV. We do hope this is short lived and we can go back to the J tube feeds at some point. The TPN is really not the direction we thought we were going. Stephanie is really not progressing at all; in fact she is many, many steps back. She is at home now but still having bouts of severe pain. She takes many medications to at least help manage her pain. She goes to school two afternoons a week with her nurse but only for a few hours. Her energy level is not great but she manages what she can.

Stephie has lost all bladder and bowel control. She has also gotten very puffy. Her doctors are concerned. We will be seen by Urology, Nephrology and Neurology to se if we can some get to the bottom of all this. They are also hoping to do an MRI very soon.

She is trying to maintain her spunk under all of this change but it is getting harder and harder each day. It is very difficult to watch Stephanie go through all of this. We are doing our best and just living minute by minute right now. Stephanie spends most of her day resting and conserving her to get through a short play session when her sisters get home from school.

Colleen has taken the time to organize the Mat-A-Thon this Saturday (June 16th) a benefit for Stephanie. If you would like the information please go to: http://www.corebasics.com/. It will be a great day filled with a filled with door prizes, excellent Pilates instructions for all levels. Thank each of you who have help, donated, prayed, sent good karma…

Mrs Dube spent much time and energy organizing a Fashion Show in Stephanie’s Name. There was fun had by all. We Thank you all who helped with making this event such a success.

Denise, Adam, Jamie, Paul and Laurielle have made it possible to put together a beautiful Montage of Stephanie last five years. I hope you will all get a chance to see it. Please feel free to contact me for more information about the video. Thank you Mantis Media. I do hope to get the opportunity to Thank each one of you for all of your hard work. I wish you could all have the opportunity to meet Stephanie and just see her spunk and love of life.

Stephanie has and will be in and out of hospital until we can get a handle of what is causing all of this. Our hope right now is to try to get her off or partially off the TPN (IV fluids). We Thank you all so very much for your continued support. Thank you for you calls, emails, meals and help with the children. Feel to Leave a note for Stephanie she can really use some words of encouragement right now. I will keep you all posted.

Be Well
Denise

WE ARE HOME!!!!!

Guess What

WE ARE HOME!!!!!!!!!!!!!!!!

Thursday March 15th has been our discharge date for some time. We did not tell anyone for fear of jinxing it. After many many hours of teaching, learning, planning, organizing, and fretting we are finally home. It is so nice to not have to wake up to so many strangers everyday, to sleep in my own bed and more important to be with our family.
Leaving the security of the hospital will be a difficult transition because Stephanie is still medically fragile and requires a lot of medical attention.

We will have a full time nurse to help care for Stephanie both at home and school. Yes I did say school. Hopefully Stephie can go back to school on Tuesday. She is so excited so we will see what she can handle. She has a few extra tube bags and accessories but other than that she is the same gal who left in September.

The hospital is very supportive of have Stephanie live a “normal” life outside of the hospital but they did remind us that we will continue to be frequent flyers at Sick Kids. Stephanies medical issues are far from over but the hope is she can live as well if not better than what we were doing at hospital only here at home. She will be closely monitored by the many teams involved in her care. We continue to hold onto the the hope they will find a cure for Stephanie at some point.

Stephanie has never been happier to be at home with her sisters. Her many supports were there to see her off and she proudly walked through hospital telling anyone who would listen that she was going home. She quit her job (restocking flyers at The Family Resource Center), said her Good byes and after one last game of Bingo she happily skipped out of the hospital.

Happy St Patrick’s Day (this will be the best one ever!)

Denise

Spring is Here!!

I can’t believe spring is here and I have not posted in so many months. Things with Stephanie have changed dramatically. She has yet to leave the hospital, we are in our 6th month here. I will try to keep this as short as I can but as mentioned so much has changed.

Stephanie still has no motility meaning her stomach does not work at all right now. Anything she does put into her mouth will stay in her stomach causing distention and severe pain. Stephanie has a gt G Tube which drains her stomach 24/7 to keep even stomach bile draining rather than just sitting in her stomach. Because we have to keep her stomach from disending she is unable to eat solid foods. She is very restricted to soft, smooth light food that can easily drain through her G Tube without blocking it. Initially this was extremely difficult for Stephanie she missed eating, the social aspect of eating and as she would say “I need something to crunch”. We have came up with the “chew and spit” solution so Stephanie can actually now enjoy and savor foods. It works just as it sounds. The doctors here were very impressed at her ability to do this as it does take so much will power on Stephanie’s part. She is the one who can make this conscious decision based on how her stomach will feel if she does eat the food. Needless to say we have had few problems.

Stephanie is getting her nutrients through her PICC line. She gets TPN and Lipids each day. They are like IV fluids. She also get feds through a GJ tube which feeds her directly into her intestines where she is able to absorb the nutrients essential to grow. She has grown well and gained4 kilos in the past 6 months. Feeding her in this fashion is how we will have to leave the hospital. It will require training and close attention, monitoring and a major life style change but it is certainly achievable. Stephanie will have three different feeding machines at home every night to help her maintain her nutrients and keep hydrated. (she is unable to absorb even a drink of water).
We are trying to work it out so she has at least 4-6 hours of off time each day. She will have her drainage bag open during that time but no feeding machines.

Despite the new feeding methods Stephanie still has frequent bouts of severe pain. We have had tests, blood work, scopes and even a surgery since we have been here trying to figure out why this is all happening and still it is a mystery. Our new theory is her bowels are not working well enough to handle the feeds. We have lowered her feeds and increased her TPN to see if this makes a difference. Only time will really tell.

We hope to leave the hospital some time in the near future. We will maintain Stephanie at home under very close supervision by our many teams. Stephanie will have a full time nurse to help her get through the everyday meds, tubes and challenges she will face living outside of the hospital.

All in all life in hospital has been ok. Stephanie has left a lasting impression with many of the volunteers, nurses, doctors…She is a gal with a lot of determination and spunk. Stephanie is my hero!

Thank you all for your help and support I will try to keep this page updated as often as I can.

Denise

Halloween Hello

Halloween Hello

Well September has come and gone without a lack of excitement Stephanie
really did not bounce back from her August stay here at Sick Kids.
She has spent most of September with a distended tummy and in a lot of pain.

School has been a great distraction for Stephanie. She loves going, learning
and playing with her many friends. The days were long but she copes as
best as we can expect. Despite her g tube falling out on the second week of school
it was rather uneventful.

Finally on October 1st the pain was just to much and with yet another sleepless
night we decided to go to emerg. Stephanie was admitted for what we thought
would be a few days and we are still here 29 days later.

We thought this time maybe she had another actually mechanical obstruction again
because we after several days of bowel rest she was still not responding.
They have put a PICC line and put Stephanie on TPN and Lipids to try to keep her weight up. For some reason her motility has gotten much worse and we are really
unable to get any food to leave her stomach and go down to her intestines where
she really gets all of her nutrients. She is on a clear fluid diet and whenever we deviate from that and try full fluids the result is pain and distended tummy again. Whatever she puts in her mouth causes a distended tummy so we open her tube to vent her stomach and she loses all of her feed out of her tube plus more (bile).

At this point we are all very frustrated including her surgeon and more importantly so is Stephanie. She is trying so hard this hospital stay to cooperate with the everyday events of being in hospital, the daily diet changes, not being in her home, not seeing her family and friends and dealing the many different doctors in and out of her room daily.

My mother has come to help us with things at home- Thank God for her help!!!. Sydney and Danielle are doing as well as they possibly can right now. It is very difficult for them as well to not have Stephanie and I around during all of this. We really just want to have a normal family life. We have spent many occasions and holidays here at Sick Kids and for my dear Sydney Halloween is yet another without her sister and mom!

I am not sure how much longer we will be in hospital and we have come to terms with the whole idea of this being the only place for Stephanie right now. Please send us your positive thoughts and hope that we finally get to the bottom of all this sometime soon.


Denise

September in progress

September has really been banger of a month. Stephanie got out of the hospital just in time to start her first day of school. She had many appointments that first week of school however she did manage to attend school between seeing her docs Friday was the eventful day. She was not well so I took her to the GI clinic to have her tube looked at as it is often the source of the problems. It looked good we cleaned it up and had her back at school for 9:00.

Within a few hours I got the dreaded phone call that Stephanie's g tube had fallen out at school. Thankfully Greg was home that day and could rush over to the school. He got the catheter in but Stephanie let out a scream and it pop out and onto the floor. So, we must have to rush off to sick kids before everyone leaves for the weekend. Stephanie was very brave through this whole thing. Her biggest concern was that she was without her tube. She believes she actually is lucky to have it as it keeps her well. So without the tube her anxiety grew.

Stephanie really is not bouncing back from this recent hospital stay. We think she is really unwell but refuses to actually tell us in hope of not having to return to the hospital. We are trying to work with her but her disposition lately is really black or white. She said her tummy is making her angry. It is so difficult to watch a sweet little girl go through this every day.




Thats all for today
Denise

Rollercoaster August

Well, August has proven to be a very interesting month. I have not posted as we have been busy trying to keep up with the summer and all. We were advised to keep Stephanie distracted this summer so she spent her days in summer camp, and weekends found us at the local amusement park. The tactic of keeping her occupied worked for the most part, however, Stephanie would tire easily. We thought several times that we should take her to the hospital for some bowel rest and each time she appeared to overcome the pain. Her Gabapentin has been increased once again and we do feel it is helping Stephanie cope better.

Looking back, I wonder if we were just postponing the inevitable. She was getting worse by the last two weeks of August and we really just saw her going down a slippery slope. At these times Stephanie's behavior is off, with wild temper tantrums, which is exactly what happened. We took her to emerg on Friday and although she looked well we knew things were off. It is always very difficult for all involved when going through emerg with Stephanie as she often does not appear to be as sick as she actually is. She is also very smart and knows what the next steps will be if she gets admitted (IV's, ng tubes....). The surgeon actually came down and admitted her and within a few hours, she was unwell and vomiting green (a difficult task for a girl with a fundoplication). We used her g tube to vent her and she was draining about 500 cc at a time. Stephanie actually said that she thought she was very lucky to have a g tube because now she does not need an ng tube. While in hospital we had a chicken pox and MRSA scare, so we spent the week in isolation. In the end Stephanie was cleared; better safe than sorry I guess.

The highlight of Stephanie's hospital stay was again the visit from the clowns. Her old buddy Doko was back after a leave, so Stephanie was thrilled. She also kept busy with another favorite, Bunky, as well as Shaynee the therapeutic dog and the many wonderful volunteers.

The plan is to have a team meeting sometime this month to try to figure out our next step, as we really are just maintaining Stephanie. Now hopefully we can move forward with something else to try to get her through this. She is starting Junior Kindergarten on Tuesday so hopefully the transition will be good.

So, August is over with a week of bowel rest and we are ready to tackle September and move forward with JK.
Denise

Stephie's Page

Stephie's Page

Medical Jargon

Stephanie is currently being followed by the Pain Management Team, General Surgery, Urology, GI, and Genetics at Toronto's Hospital for Sick Children.

The Pain Team
Stephanie is taking several meds prescribed by the pain team: Gabapentin, Advil, and Tylenol. She is working very hard with the team psychiatrist to find better ways to control her anger and vent her frustration. Stephanie has a bag of tricks to help her through the painful events, such as a soft ball to squeeze the pain away, a wind mill to blow the pain away, an mp3 player to distract her, a soft fabric doll who undergoes all the procedures Stephanie does, her favorite doll for comfort, and finally her imagination, which can take her anywhere she wants to go.

Under GI's care
Stephanie is followed by a GI doctor, but has most of her contact through her GI nurse and G tube nurse. She has had a difficult time with her tube and has granulation tissue causing her discomfort. We now have a button in, but she is still having trouble so we are going to change it to a smaller button this week. The G tube nurse, the clown and mommy will be the helpers in the first in-office tube change for Stephanie.

Stephanie is also taking rolling doses of antibiotics for bacterial overgrowth which really has been helpful. She has been on Cisipride in the past, but had rash reactions to the drug and is currently taking Domperidone.

The Surgeons
Stephanie's surgeon has been the one person who has stood by her since birth. He has believed in Stephanie when she was insistent about issues which are always very unclear. When Stephanie says she needs to see her surgeon, he really takes her word seriously and follows her direction. Stephanie has been about as far from a text book case in her many battles as is possible. She defies the diagnosis and proves us all wrong in each and every case.

Urology
Stephanie has Urinary Reflux and is followed by the Urology team at Sick Kids. She has been off her medication for several months and is doing well. Let's hope this trend continues!

Stephie's Page