Some are aware that Breanna has something called Bladder Reflux, Basically this means that her bladder does not do a complete void. When she goes to the washroom, she leaves some behind, casuing it to travel back up into her kidneys. This has caused alot of the issues she is having. But we are working on her bladder muscles with intermittant catheterization. This means that we have to do a manual catheter insert and completly empty her bladder. We do this for times a day. Well right now we are doing it 3 times a day but next week we will be doing 4 times a day which is what the DR ordered. She will have to continue this porcess for many years to come. Once she has a new kidney, we will still have to do this process until her Bladder muscles rebuilt themselves and she is able to have control., In the begining, this was not easy. Not for either one of us. For about a week, you would have thought she was being raped!
Yes Raped! No parent should have to do this to their child. BUT we do not have a choice. Until she is ready to learn to do this herself, this is something I have to do. Why?????? Because I am her mom, and that is what we do. It did not take long for Breanna to calm down. She does not yell anymore, we make jokes, and talk about making apple juice. We usually say it is for her brother. I am pretty sure he will never take a bottle or a glass of apple juice from his sister Breanna. Can't say I blame him...lol This is the Joke that helps her get through this ordeal. She is a trooper. She now laughs and it is over and done withing 5 mintues. It is second nature, just like everything else she has had tolearn to deal with. Why? Becasue she has to! It is a part of life. Her life. Till this day, she is still the one thjat gives me the strenght that I need to get this everything we are dealing with. It is not easy. Not easy for anyone in our family.
But as long as we see progress, we can't look back. We have our baby girl at home with us. She is not laying in a hospital bed, she is dealing with life, as it is thrown at her.
Thursday, 2 August 2012
Donation process has ended for Dad!!!!!!
Frustration!!!!!!!!!!! That is one of the things that I felt when I got the news, that dad is not able to donate his kidney to Breanna. It has been a VERY long 6 months, only to fiund out that it was for nothing. Nothing for breanna anyways. The good news that came from it was dad has some things of his own he needs to take care of. So what is the next thing we do??? This not an easy thing to decide to do for ANYONE! BUT.....we cannot wait for a phone call back or an email that has gone unanswered. People are still living their lives and I am OK with that. But don't ignore one of the most precious things to me. That bothers me!!!!!! That makes me mad!!!!! If you decide you want to do something, That is great. If something comes up and you have changed your mind, that is fine to. I get it! But do not ignore the situation or the people that you already spoke to. GRRRRRRRRRRR Take a long look at what is going on your own life and make sure BEFORE you volunteer to do something like this for anyone, That it is the right decision for you and all involved. I am frustrated that this wait is longer and getting longer everyday. The word is out that Breanna needs a kidney. Along with many many people in this world, Breanna is my number one, that needs a kidney. She is the one I am fighting for today. So for anyone that wants to do something, I am putting the word out there that THEY need to take the step and make the call to Jennifer Cross in London, She is on the transplant team and she is the go to person that takes care of everything that needs to be done. Her phone number is 1-519-685-8500 ext. 35932. You may also send her an email as she is a very busy person, as you could imagine. Email is jennifer.cross@lhsc.on.ca. It may take her a few days to get back to you. But....she is full of information and knowledge. Nothing is communicated to us. It is all private and confidential.
Overwhelmed was my next feeling. I have had a few people come to me and say, I want to do this for Breanna. WOW!!!! People that I did not expect. I still come to tears when I talk to anyone about one person in particular. One of my favorite cousins!!!!!! It hit me hard when I heard that she wanted to do this. Putting my baby as her number one. I still have not gotten over the overwhelming feeling. I know that I have to do something about this but right now, it is hard, Very hard for me. Being overwhelmed with the amount of support has not stopped. This is a new kind of overwhelmed!!!! I can't describe it.
OK That is enough, just typing i am in tears. REALLY!!!!!!
Overwhelmed was my next feeling. I have had a few people come to me and say, I want to do this for Breanna. WOW!!!! People that I did not expect. I still come to tears when I talk to anyone about one person in particular. One of my favorite cousins!!!!!! It hit me hard when I heard that she wanted to do this. Putting my baby as her number one. I still have not gotten over the overwhelming feeling. I know that I have to do something about this but right now, it is hard, Very hard for me. Being overwhelmed with the amount of support has not stopped. This is a new kind of overwhelmed!!!! I can't describe it.
OK That is enough, just typing i am in tears. REALLY!!!!!!
Saturday, 23 June 2012
EMOTIONAl is how I can describe our last visit to London!!!
We had a good clinic visit while in London, it was the after math that turned into one of the worst days of my life!!!!!!!! All her blood work is good, We did a 24hr uring sample and a peritoneal fluid drain sample and no concerns. He is concerned that her iron is low so we added one more iron pill for the day. knock on wood the iron pills are not upseting her stomach at all. That is a good thing becasue I guerss it is very common for that to happen. We also discovered at this visit she may have an allergy to nickel. She breaks out in a rash on her hand every once in a while so that is something new we have to watch for. Not a big deal but still concerning. Once we were done in regular clinic Breanna had to have something to at, so dad took her for a bagel at timmies. With that she had a rootbeer. For breakfast on our way up she had a bagel and apple juice. After she ate we wnt over tot he catheter clinic to start training. This is where the day turned into a NIGHTMARE.
We had no idea what to expect going on. We did sit with Dorothy Harris who is the oerson we will talk to and be trained through. She is the catheter go to person. She went over a bunch of information on all the supplies we need and pictures of the steps to take. We watched a 12 minute video of kids that do this for themselves daily. It shows us that, once Breanna gets used to it, it will become second nature for her. (This will take awhile) Breanna has had alot of things she has had to learn to do to survive on a daily basis.
This is just one more thing that we will both get through. It is not going to be easy but we understand how importanmt this is. It is not a permanent catheter. It is something she has to do 4 times a day manully.
Breanna is very private. She does not like anyone looking at her private areas let alond mom having to get right in there to insert a catheter. Having to do this to my daughter is HEART WRENCHING. I know I will get through it becasue I have to. THAT IS WHAT I HAVE TO DO!!!!!!!!!!!!
Our very first day, we had to do this. I went in with an open mind and thought, OK this will just be another part of our daily routine!....When I seen the HORROR on Breanna's face, I knew it was going to be rough. I just didn't know how rough. Having to touch her and insert a tube into her Urethra is NOT FUN. Listening to her SCREAM in pain yelling at me to take it out, ripped at my heart.
We didn't get any urine and we finished, I pulled it out and me and Dorothy switched places so that I could my daughter and cry with her. That I did!!!!!!
I do have some supplies here and we have to get it started in baby steps. I need to work on gettinmg through this and helping Breanna get through this. I know once we have a few timeas done, it will get easier. Just like everythng else. But I also know that this over ANYTHING ELSE, will take ALOT of TEARS. AND ALOT OF TIME!!!!!!!!!
I have to see where I can get supplies from, this is not something that is covered with the other supplies. So today I will go shopping to see what I can get and start the process. Tomorrow will not be a fun day. As we try it again.
Just when I think we can get on with our day. We go to Jack Astors for Dinner. I figured it would be for lunch but we were at clinics until 4:30. So as we sit there Breanna was hungry and starting to get some pain in her upper stomach. Heartburn area. We figured maybe she was hungry. She was hungry but eating some bread and some cecear salad did not help that pain at all. She had a few bites of her Chicken Fingers and that was it. Her pain got worse to the point where she was struggling to breath because it hurt. I called the hospital just to check in and see if we should be concerned. She did have a rough afternoon afterall. The residant neuphroligist did suggest we bring her in just to make sure. I was not even off the phone yet and dad was taking her, crying out to the car. So off to the ER we go. They could not get a blood pressure reading becaause she was in so much pain she was screaming. They got her a bed and she was able to lay down, with a warm blanket of course. She loves her warn blankets. This seemed to relax her a bit and she calmed down. Eventually the pain started to subside, her blood pressure was 118/58. A little high but normal. They did another urine sample, ultra sound of her chest, her stomach, and an EKG. No Concerns. Dr Filler did order a stronger pain med that he wants her to take for atleast a week. We have to monitor her diet daily and get her to drink more water. She is already used to a restricted diet so it should not be that big of a deal. FINALLY back on the 401 for home at 10:30. What a long day!!!!!! I was so Emotionally drainer for the rest of the night and the whole day afterwards while attending a work meeting all day in Chatham. Then IO took the girls to Pat and Hanks for dinner and enoyed a family night out at the movies. We need to do more of this for sure. It was a fun outing after a long day. Breanna has only had one small dose of upper stomach pain but it was gone as fast as she told me it was there. She is feeling good and ready to get on with her day.
Another day! Another Tear! Another survival!
We had no idea what to expect going on. We did sit with Dorothy Harris who is the oerson we will talk to and be trained through. She is the catheter go to person. She went over a bunch of information on all the supplies we need and pictures of the steps to take. We watched a 12 minute video of kids that do this for themselves daily. It shows us that, once Breanna gets used to it, it will become second nature for her. (This will take awhile) Breanna has had alot of things she has had to learn to do to survive on a daily basis.
This is just one more thing that we will both get through. It is not going to be easy but we understand how importanmt this is. It is not a permanent catheter. It is something she has to do 4 times a day manully.
Breanna is very private. She does not like anyone looking at her private areas let alond mom having to get right in there to insert a catheter. Having to do this to my daughter is HEART WRENCHING. I know I will get through it becasue I have to. THAT IS WHAT I HAVE TO DO!!!!!!!!!!!!
Our very first day, we had to do this. I went in with an open mind and thought, OK this will just be another part of our daily routine!....When I seen the HORROR on Breanna's face, I knew it was going to be rough. I just didn't know how rough. Having to touch her and insert a tube into her Urethra is NOT FUN. Listening to her SCREAM in pain yelling at me to take it out, ripped at my heart.
We didn't get any urine and we finished, I pulled it out and me and Dorothy switched places so that I could my daughter and cry with her. That I did!!!!!!
I do have some supplies here and we have to get it started in baby steps. I need to work on gettinmg through this and helping Breanna get through this. I know once we have a few timeas done, it will get easier. Just like everythng else. But I also know that this over ANYTHING ELSE, will take ALOT of TEARS. AND ALOT OF TIME!!!!!!!!!
I have to see where I can get supplies from, this is not something that is covered with the other supplies. So today I will go shopping to see what I can get and start the process. Tomorrow will not be a fun day. As we try it again.
Just when I think we can get on with our day. We go to Jack Astors for Dinner. I figured it would be for lunch but we were at clinics until 4:30. So as we sit there Breanna was hungry and starting to get some pain in her upper stomach. Heartburn area. We figured maybe she was hungry. She was hungry but eating some bread and some cecear salad did not help that pain at all. She had a few bites of her Chicken Fingers and that was it. Her pain got worse to the point where she was struggling to breath because it hurt. I called the hospital just to check in and see if we should be concerned. She did have a rough afternoon afterall. The residant neuphroligist did suggest we bring her in just to make sure. I was not even off the phone yet and dad was taking her, crying out to the car. So off to the ER we go. They could not get a blood pressure reading becaause she was in so much pain she was screaming. They got her a bed and she was able to lay down, with a warm blanket of course. She loves her warn blankets. This seemed to relax her a bit and she calmed down. Eventually the pain started to subside, her blood pressure was 118/58. A little high but normal. They did another urine sample, ultra sound of her chest, her stomach, and an EKG. No Concerns. Dr Filler did order a stronger pain med that he wants her to take for atleast a week. We have to monitor her diet daily and get her to drink more water. She is already used to a restricted diet so it should not be that big of a deal. FINALLY back on the 401 for home at 10:30. What a long day!!!!!! I was so Emotionally drainer for the rest of the night and the whole day afterwards while attending a work meeting all day in Chatham. Then IO took the girls to Pat and Hanks for dinner and enoyed a family night out at the movies. We need to do more of this for sure. It was a fun outing after a long day. Breanna has only had one small dose of upper stomach pain but it was gone as fast as she told me it was there. She is feeling good and ready to get on with her day.
Another day! Another Tear! Another survival!
Sunday, 29 April 2012
Small SetBack due to Reflux
Breanna continues her fight every day. She is your typiocal teenager playing outside with her friends and going to school everyday. Other then all the pills she has to take and the nightly 10 hours of Dialysis. Her blood continues to come back with no concerns. Herphosphate was a little high this week but no concerns. I got the results from her ultrasound regarding the bladder reflux. She basically needs a new bladder!!!!! Her post void residue was high at 358cc and ger curve itself was abnormal (staccato). Her urodynamics showe a good bladder capacity but slightly high filling pressures between 30 to 40 cm h2o. The concern here is her pressure is rising early in her fill. We do have to repeat this test with an ekg. Also we have to have an MRI. Once we repeat this test we will have some more answers to this issue and we will have more info on what needs to be done to fix the problem. Worse case will be she will have to have a CIC. Which is a permenant catheter put in so that she has a full void. Not a good option but it is an option. Right now we are trying to train the blasser to have a full bladder and more frequent bathroom trips for Breanna. This will be a struggle for her as she usually only going to the bathroom about 3 maybe 4 times a day. We need to bump this up to 8 to 10 trips.
She continues the fight while mom stresses about everything that is going on. I hate that tjhsi is happening to one of my babies and I look at Breanna for the strength to get through day by day.
This was one of the visits while in London from two of the players from the London Knights!!!!!!!
She continues the fight while mom stresses about everything that is going on. I hate that tjhsi is happening to one of my babies and I look at Breanna for the strength to get through day by day.
This was one of the visits while in London from two of the players from the London Knights!!!!!!!
Saturday, 18 February 2012
The Special Mother
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger. "Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity." "Forrest, Marjorie; daughter. Patron saint, Cecelia." "Rutledge, Carrie; twins. Patron saint, Matthew." Finally He passes a name to an angel and smiles, "Give her a handicapped child." The angel is curious. "Why this one God? She's so happy." "Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel." "But has she patience?" asks the angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it." "I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy." "But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect -she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?" God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a "spoken word". She will consider a "step" ordinary. When her child says "Momma" for the first time, she will be present at a miracle, and will know it!" "I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side". "And what about her Patron saint?" asks the angel, his pen poised in mid-air. God smiles, "A mirror will suffice." Stefani...............after you wipe away the tears.....this poem wll get you through some tough times. I love you very much. You ARE a great mom. You ARE a strong woman. You ARE just fine, even through the moments of sadness and emotional turmoil! You ARE the right mother for such a journey. Breanna is a lucky little lady to have been chosen for you! xoxo Kimberly |
Friday, 17 February 2012
First Clinic visit
Relieved!!!!! That is how I feel after our first visit. Dr Filler has some concerns about her Blood Pressure still being a little high so he has prescribed one more med. for Breanna to take. Breanna is holding in water so she is a bit bloated all over. Not to concerned just making some minor adjustments. Limit fluid intake to 2 litres a day. We have to watch her suger levels as they are starting to go up, She is still in the normal range but it is climbing. And her sodium level is higher then we would like so we know we have to watch her sodium intake. We have known this from the beginning. We will be back in two weeks for another clinic visit and she has another test, I forget what it is called at the mment but it is to see which valve is not working properly in her baldder causing the Bladder Reflux. That will not be a fun test. But she will get through.
Tonight we have increased her Dialysis fluid so that more fluid will come off. Hopefully this helps. But she had a great night. No Crying at all. Just a small, oh it hurts mom. She is sound asleep which is where I should be. Goodnight. Tired today!
Tonight we have increased her Dialysis fluid so that more fluid will come off. Hopefully this helps. But she had a great night. No Crying at all. Just a small, oh it hurts mom. She is sound asleep which is where I should be. Goodnight. Tired today!
Thursday, 16 February 2012
mom is having an emotional day!
Breanna is doing great. Her blood pressure is good, she is gaining her weight back that they think she lost. But mom is having a very very emotional day!!!! Could it be everything is catching up with me? Could it be the overload of information? I have no idea. Just one of those days. My MIL has been admitted into hospital. I can't really hang out there with her in fear I will bring something home for Breanna to catch. Although I did get up to see her quckley today and had a few words with the nurse in charge! Tell me or try to tell me I can't look at her chart, go ahead and try to stop me. Just need to make sure we are all on the same page. Nothing but the best for my family. Not only are we our childrens advocates, but we are fighting for our elders as well. I can tell you one thing, the Doctors and the nurses are not going to like me when they see me. I want answers and I want them now. Just off today. If you look at me I might cry. Can't help it. Thats just the day I am having. I am sure it will pass. And I am sure it won't be the last one.
Breanna is hangin out with Grama Barb today. I thunk they are making oatmeal cookies. And grama made sure she had the right snacks for Breanna while she is there. She loves her Grammy Barb.
Breanna is hangin out with Grama Barb today. I thunk they are making oatmeal cookies. And grama made sure she had the right snacks for Breanna while she is there. She loves her Grammy Barb.
Wednesday, 15 February 2012
What an exciting week this haas been
Wow it has been a whole week since we have been home and so much has gone on. We are still getting so much support and knd words. On Saturday we were asked to be at the Riverside Minor Hockey's Annual 12 minute tournament. They wanted to see Breanna be a prt of that. Let me tell you, It was ABSOLUTLY AMAZING!!!!!!! We did so many interviews that day. It was crazy. I think my last one was the only one that I did not cry. on camara anyways!!! Thanks for not airing all of it..lol Breanna even did an amazing job in her interview. One reported asked for one of the players for an interview so when I went in with the coach a couple of them raised there hands but Izzy Lajeunese (sp) stepped up tp the plate. I wish his interview was aired on TV but for whatever reason they decided not to use his. Listening to the wprds that came out of his mouth overwhelmed me. To hear how this has affected the team. To know that these boys care about Breanna to go above and beyond what typical 13 and 14 yr old boys do. Thank you IZZY.
Also today we found out that Breannas wish was granted through the Make A Wish Foundation. We are going to Disney World!!!!!!! She is SUPER excited for this trip. We are just waiting to get some more info to decide on a date. Breanna said lets go tomorrow!!! I wish it were that easy kiddo. I did try to include all of her family on this trip, Amber and Daniel, Daddy and Deanna, but was told no, Breannas household ONLY. Actually they said that anone could go, but they would have to take care of their own trip. And alot of specialties that Breanna will get they would not be included. That sucks but I don't make the rules, but I do enforce them. This is all about Breanna. Noone else. Tonight we are going to watch her brother play in his 12 minute tournament. She LOVES hockey!!!!!! and mom is Tylers best cheerleader!!!!
Also today we found out that Breannas wish was granted through the Make A Wish Foundation. We are going to Disney World!!!!!!! She is SUPER excited for this trip. We are just waiting to get some more info to decide on a date. Breanna said lets go tomorrow!!! I wish it were that easy kiddo. I did try to include all of her family on this trip, Amber and Daniel, Daddy and Deanna, but was told no, Breannas household ONLY. Actually they said that anone could go, but they would have to take care of their own trip. And alot of specialties that Breanna will get they would not be included. That sucks but I don't make the rules, but I do enforce them. This is all about Breanna. Noone else. Tonight we are going to watch her brother play in his 12 minute tournament. She LOVES hockey!!!!!! and mom is Tylers best cheerleader!!!!
Tuesday, 14 February 2012
Nights are easier
We have been home for almost a week and our nights are gewtting better. Lastnight Breanna did not even feel her initial drain. (thanks Mark) Breanna is getting good at taking her own BP and all the stuff she has to do when getting ready to go on Dialysis and getting off in the morning. She should not have to do this at the age of 13, but she does. Lastnight we had a visit from a family from the Windsor Minor Hockey Association, where the 14 yr old boy Tyler, presented Breanna with an official Get well card. It is HUGE. All the players signed it for Breanna. I would liek to see Breanna ack in school in two weeks. that is the next goal she is working on. We will start off parttime until her body can get used to it.
One step at a time they say. I don't think I can go any slower.
One step at a time they say. I don't think I can go any slower.
Thursday, 9 February 2012
First night home
5 long weeks and we are finally home. I had so many emotions going on when I heard it was that time. We didn't tell Breanna right away becasue well we wanted to make sure. She was down in the art room painting. I went down there aftter packing half of her room. As aI was sitting hthere she just new something was going on. She looks at me and says, mom whats going on? I said nothing why. "Are we going honme?" I could not stop the smile from coming across my face. She started crying. I started crying, again!
We got home and then panich set in, all this equipment, all this set up, all these supplies. HOLY SHIT!!!!!!!!
I started with the basic, what do I need for tonight? Bonnie helped me set up the first set of supplies. Then we had the task of whats for dinner. I decided Pizza, Ordered seperatepizzaa for Breanna with very little sauce and cheese. She loved it!!
Our first night at home was a great success. She did not wake in in pain. she had maybe 5 mintures of general pain in the beginning but we are very happy with how our night went.
Heres hoping for a second good night!!!
We got home and then panich set in, all this equipment, all this set up, all these supplies. HOLY SHIT!!!!!!!!
I started with the basic, what do I need for tonight? Bonnie helped me set up the first set of supplies. Then we had the task of whats for dinner. I decided Pizza, Ordered seperatepizzaa for Breanna with very little sauce and cheese. She loved it!!
Our first night at home was a great success. She did not wake in in pain. she had maybe 5 mintures of general pain in the beginning but we are very happy with how our night went.
Heres hoping for a second good night!!!
Sunday, 5 February 2012
One week of PD
Its been a very long week. I am so tired and cannot wait to get home. But Breannas body is not working with us on this. She is on new meds to help with the pain in her legs due to the nerve pinching that is going on. She is also now on New meds to help with her anxiety. The first night on the meds was not to bad. She had some pain in the begining of treatment but then slept for most of the night. Tonight was a different story. Dr Sharma decided to up the dose of the Anxiety meds and this just made her stoned. It didn't really kick in until about 2 hours after taking it. She was complaining of chest pain, hard time breathing because it hurt, She could breathe no problem but it hurt to do so. Now she fights with me to go to the bathroom. She is adament she has to go right now, she is in the middle of a fill and I tell her to wait until the fill is done. Ya she was not having anything to do with waiting. So dad stepped in and said drag the machine to the bathroom, and that we did. I carried Breanna and dad pushed the machine and made sure no wires got pulled or tugged. We don't need more issues. While going ot the bathroom she is very dizzy. Once done, she is even more dizzy. Has a hard time standing up, I had to have dad carry her pretty much to her bed, where she fell onto and grabbed onto me with death grip because she did not like the way she was feeling. She was so dizzy, she could not see. I called the nurse in a panic and told her what was going on. She started to do some testing for stroke. All her levels were fine, Blood pressure was ok, Heart rate was good. She was just seeing double. Checked her chart and the nurse realized her meds were doubled and this is the issue. I had to calm Breanna down so I politely but quickly asked dad to leave the room. Breanna does not do good when there is more then one of us in the room fussing over her. Once it was just me and her I got her to calm down. She had a few meltdowns as she was scared. She wanted to know what was going on with her head. She was scared for herself. I got her to calm down and she finally did and laid there relaxing. Dad came back and sat with her until she fell asleep. I left the room for awhile and when I came back in she was in the middle of a drain and sleeping through it. THANK YOU UP ABOVE. I left the room again and when I cam back both Breanna and Dad were fast asleep. I left for the night. Said good night to the nurses. And now 2 hours later I am still wide awake. Now that I have this off my chest hopefully I can get some sleep. I worry about my baby girl so much it hurts!!!!!!!!!!!!!!!!MOM
Saturday, 4 February 2012
Finally an update from DAD...
I suppose that my posting on Facebook isn't the only place people are tuned into, sorry everyone I have been ultra busy and will try to be on here much more often. Her past couple of weeks of Hemo Dialysis have been essentially painless and calm. She would go on at around 12-1:00 each day for 2 hours and get her body cleansed. On Hemo, she would be able to have some of her favorite foods which were restricted in her diet. One day a slice of pizza, the next some regular chips, and so on. What we take for granted she is now not able to enjoy. Her journey into the Peritoneal Dialysis world has been a very tough one on her this week to put it lightly. Mom was in with her for Monday, Tuesday and Wednesday, she had no sleep for these days but a few minutes here and there. On Tuesday it was so bad she nearly called me to help out. I to this day have never imagined the amount of pain she would endure with this treatment until I saw it Thursday evening myself. This pain was unbearable to watch, but fight through it she did, crying in pain she had to. The pain medications had not done or taken the edge off like planned. It took Mom to be on a web site with other patients of Peritoneal parents to suggest that some Tidal fluid be left in the Peitoneum. This fluid would now be left in at each cycle after Breanna is filled, run through her Dwell period of 40-50 minutes. We also that we needed some better time management for getting her prepared for the night cycles. We started her Tylenol at 1 hour before starting and her Atavan, along with the Gabapentin which is for nerve blocking. Her cramping in her left leg had been excruciating for her treatments so far this week. The night went without a hitch and not a big sign of pain except for her initial drain. The whole night was without any pain and she didn't feel a thing...Have to go to the movies right now, ciao
Tuesday, 31 January 2012
The Start of Peritaneal Dialysis
Well we are on night two of Peritineal Dialysis. And so far, We HATE it!!!!!.... Sheis in so much pain every hour. It only lasts about 5 minutes but that 5 Minutes feels like a lifetime. I hate not knowing thepain she is feeling. I hate that I cannot help her. I hate the look inher eyes when she looks at me and cries, "Mommy it hurts" When will thsi go away?? Can someone tell me that? This is suppsoe to be the best thing for her to be able to live a normal life. But she has to suffer before that can happen. It does not seem right to me. Who has the answers? NOONE!!!!!!!!!
URGHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH
Think I will go for a quick walk now.
URGHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH
Think I will go for a quick walk now.
Monday, 30 January 2012
Week 4
Well headed into week four of being in London, We start her Peritonial Dialysis tonight. We did have a little scare on Friday night because my poor Breanna ws complaining of leg cramps. She is not a complainer, so when she starts crying, It hurts. We called Dr Grimmer and she suggested we take oer tot he Emergency. So we pulled out a wheelchair and dad drove her crazy, I mean over...lol
Once we got there, the Dr's were nto sure, They ran some tests on her leg, then sent her for xrays. She did not like that very much becasue she had to move her leg around. Once that was done we went back to her room to wait for the results.
Guess what???? WHile waiting Breanna become VERY gassy. And then she went to sleep...Yep, that ws her problem. She needed to let out some steam. And that she did. A third Doctor came in and had no idea wat was wrong. It is now three days leter and she has had no cramps. She feels just fine.
I finally got a good night sleep over the weekend. I am well rested. I am sure until tonight when the Nightly dialysis starts. WIsh me luck!!!!!!!!
Once we got there, the Dr's were nto sure, They ran some tests on her leg, then sent her for xrays. She did not like that very much becasue she had to move her leg around. Once that was done we went back to her room to wait for the results.
Guess what???? WHile waiting Breanna become VERY gassy. And then she went to sleep...Yep, that ws her problem. She needed to let out some steam. And that she did. A third Doctor came in and had no idea wat was wrong. It is now three days leter and she has had no cramps. She feels just fine.
I finally got a good night sleep over the weekend. I am well rested. I am sure until tonight when the Nightly dialysis starts. WIsh me luck!!!!!!!!
Thursday, 26 January 2012
3 weeks later
SWell it has been a long three weeks. We are still in Hospital, well actually this week she was discharged to Ronald MCDonald House. She will be readmitted back to hospital next monday, where she will start her Peritaniel Dialysis and if all goes well with that she will be home hopefully a week after that. She is still feeling great and if youask her, she is not sick.
Just a quick update as I have been trying to get on here but, well I just didn't.
Today I am tired. I did not fall alseep until about 2:30 this monring, only to be woken up by Breanna at $;30 in Pain. This does nothappen all the time so I was kind of worried. But when I put my hand on her belly she relaxes and goes back to sleep. So it all worked out and Ihave notified the NUrse at the hospital already. Just have to remember to keep track of Everything. They say I don't have to go nuts, but if anyone knows me.....I willdrive myself insane...lol
have a great day everyone!!!!
Just a quick update as I have been trying to get on here but, well I just didn't.
Today I am tired. I did not fall alseep until about 2:30 this monring, only to be woken up by Breanna at $;30 in Pain. This does nothappen all the time so I was kind of worried. But when I put my hand on her belly she relaxes and goes back to sleep. So it all worked out and Ihave notified the NUrse at the hospital already. Just have to remember to keep track of Everything. They say I don't have to go nuts, but if anyone knows me.....I willdrive myself insane...lol
have a great day everyone!!!!
Tuesday, 10 January 2012
2nd Day of Blogging...
Ok...Dad was informed of his Angels' test results today. Eyes were tested...100% OK. Hep B and C results...Negativeon both. Things are moving in a positive direction. Dad has also been crazy busy today finding corporate sponsors, door prizes, and touching base with many old friends for help with our Bree.
Hope to have the word on our Fund account tomorrow, get more information on the charity license, and much more...Thank you to our behind the scenes friends and everyone involved here, ciao for now, Mark Van Watteghem
Hope to have the word on our Fund account tomorrow, get more information on the charity license, and much more...Thank you to our behind the scenes friends and everyone involved here, ciao for now, Mark Van Watteghem
Daddy's First post
Dad's here and trying to blog with no help...I'm in trouble.
Well here we are, you never know what life's going to hand you along the way, this one sure threw us for a loop. If anyone would have told me as our Angel was trying her heart out to play hockey in the Christmas Hospice tournament, and that she was in total renal kidney failure, we never in a million years could've guessed. Breanna has this gift of never complain, just do it attitude. She went out for warmups and did her thing to prepare for battle. When the game was about to start she asked the coach, "Coach can I miss the first shift", swallowing her spirit with every last bit of energy she had. To play in the games she did, she looked to us like she should, a bit slower due to the cold she had had for a couple of weeks. I said to a fellow parent, she does have a cold, but something else was really wrong. With her head slumpped over after many shifts, in behind the bench, she'd suck it up and miss a few shifts then back out for 1/2 of a shift. She only missed one game in the tournament. Before the Championship game I asked the coach to just give her minimal ice time, he agreed, she did it, finished the tourney, the team lost 4-3, but our Angel had won. Likely now to be her last game for a very long time.
Mom took our Angel back to their home and noticed a rash, little paler than usual and after a menial task of PennySaver delivery felt weak, got sick, then to the clinic they went. Dr. Andary was suspicious and ordered the blood work. Too pale, rash, weakness, flue like symptoms, back pain, signs of big trouble. Total renal kidney failure it was, confirmed at the Hotel Dieu emergency, then book the room at Victoria Children's hospital for the month. Dr. Angela Novena said to us,"pack for 3 or so weeks", your daughter is in need of immediate attention. The scope of this just hit us, we had an Angel in distress. Breanna through this whole event only complained about the lock in her arm for fluids, etc.
Now we come to the Victoris Children's hospital when Dr. Filler, Pediatric Nephrologist, explained our Angel had likely the chronic case of failing kidneys and would need a transplant, which is where we are. Many tests later and it was confirmed end stage kidney failure.
Only 6 days ago, at my home, and now our Angel is in the best care in London. The outpouring of support from everyone has overwhelmed me and our family, I can not put into words how humble I feel. Thank you everyone...Next blog to be shorter for sure...well maybe, shutting me down is tough also, Mark Van W
Well here we are, you never know what life's going to hand you along the way, this one sure threw us for a loop. If anyone would have told me as our Angel was trying her heart out to play hockey in the Christmas Hospice tournament, and that she was in total renal kidney failure, we never in a million years could've guessed. Breanna has this gift of never complain, just do it attitude. She went out for warmups and did her thing to prepare for battle. When the game was about to start she asked the coach, "Coach can I miss the first shift", swallowing her spirit with every last bit of energy she had. To play in the games she did, she looked to us like she should, a bit slower due to the cold she had had for a couple of weeks. I said to a fellow parent, she does have a cold, but something else was really wrong. With her head slumpped over after many shifts, in behind the bench, she'd suck it up and miss a few shifts then back out for 1/2 of a shift. She only missed one game in the tournament. Before the Championship game I asked the coach to just give her minimal ice time, he agreed, she did it, finished the tourney, the team lost 4-3, but our Angel had won. Likely now to be her last game for a very long time.
Mom took our Angel back to their home and noticed a rash, little paler than usual and after a menial task of PennySaver delivery felt weak, got sick, then to the clinic they went. Dr. Andary was suspicious and ordered the blood work. Too pale, rash, weakness, flue like symptoms, back pain, signs of big trouble. Total renal kidney failure it was, confirmed at the Hotel Dieu emergency, then book the room at Victoria Children's hospital for the month. Dr. Angela Novena said to us,"pack for 3 or so weeks", your daughter is in need of immediate attention. The scope of this just hit us, we had an Angel in distress. Breanna through this whole event only complained about the lock in her arm for fluids, etc.
Now we come to the Victoris Children's hospital when Dr. Filler, Pediatric Nephrologist, explained our Angel had likely the chronic case of failing kidneys and would need a transplant, which is where we are. Many tests later and it was confirmed end stage kidney failure.
Only 6 days ago, at my home, and now our Angel is in the best care in London. The outpouring of support from everyone has overwhelmed me and our family, I can not put into words how humble I feel. Thank you everyone...Next blog to be shorter for sure...well maybe, shutting me down is tough also, Mark Van W
Monday, 9 January 2012
Breannas Battle
WOW!!!! I would like to start off by thanking everyone for everything. There is so much info being thrown at me from all angles. It has been 6 days of information and I am not sure how much I have comprehended.
I will start bloggin everyday, Maybe twice a day. But right now I just wanted to start by saying a huge thank you. I cannot name names as there are so many people. My Biggest Thanks at this moment in Time is to the DR that had a concern about my Angel. When the time comes I will mention names or thank those personally that I just can't bring myself to do today.
Right now Breanna and I are going to hang out, with no nurses, no doctors and no visitors.
Just Mom and Daughter time. She is doing good, she is a trooper. She is a fighter and she will fight this till the end.
I will start bloggin everyday, Maybe twice a day. But right now I just wanted to start by saying a huge thank you. I cannot name names as there are so many people. My Biggest Thanks at this moment in Time is to the DR that had a concern about my Angel. When the time comes I will mention names or thank those personally that I just can't bring myself to do today.
Right now Breanna and I are going to hang out, with no nurses, no doctors and no visitors.
Just Mom and Daughter time. She is doing good, she is a trooper. She is a fighter and she will fight this till the end.
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