http://www.youtube.com/watch?v=nI8r0AXSHe0

Hi everybody,Bridgette's best friend made a song for Bridgette, I would love everyone to check it out on you tube. It's the first thing that comes up if you search Bridgettes Song.

Hi everyone, hope you all had a great Christmas!! We finally got home around 4pm on Monday. Since we have been home it has been just like the hospital, a roller coaster everyday. Bridge is good one minute and then the next she is throwing up or with shaking chills and in much more pain it seems like then when she was in the hospital. We went back to Boston on Christmas eve morning. We got there at 8:45 and were completely done with our appointment by 10am. Bridgette's lab work is much better, meaning her renal #'s that deal with the kidney are finally almost normal. The problem still is with getting the right dosing of anti-rejection medication. She is often sick to her stomach and has this all over body tremor like she is cold, but it is the medication. The doctors told us that this was unfortunately one of the side effects. Bridge is also still carrying the extra water weight that is slowly coming off, but she is about 6 pounds over her dry weight. Bridgette's blood pressure is also rising very high, so now she has to take her blood pressure medicine 2x a day. Matthew has been sick, so he has been wearing a mask in the house and I have been making him wash his hands every second, Bridgette has picked up a touch of his cold even though we have been religious with cleaning surfaces and staying away. I have to go back to work on Mon. and Wed. this week. We have blood work again on Monday and Thursday,so Mark will take her on Monday and we will all go to Boston on Thursday. We are glad to be home but still haven't gotten into a normal routine yet, can't wait to the normalcy returns. Christmas eve night was hard, Bridge was up from 1am on, she was so sick. Christmas day though was quiet and nice. We didn't go home because we were all to tired, we made a turkey and relaxed on the cough, the next day, Saturday was again very difficult for Bridge. I had to call Boston due to Bridgette vomiting and high blood pressure, Sunday though is all good, so far that is. Hope everyone enjoyed Christmas day with family and friends, have a great New Year!!! Will update the blog soon. XO Megan

So far so good today, the antibiotics seemed to have finally kicked in. We have had a shower, took nausea medicine to keep medications down. We have walked 5 laps already around the unit and ate a small amount of breakfast. Bridge has also been voiding(pee) and having normal bm's, if she keeps this up, they will let us go tomorrow. We are all very excited!! We checked out of the hotel this morning and both will sleep in her room tonight. We are looking at about 10" of snow here in Boston with a nice view from the 10th floor, but I have to say that snow is so much nicer in Vermont. Tomorrow morning they will give her the last dose of IV antibiotics, draw blood from her central line, give her the morning medications and then remove the central line. I believe once that is done we can finally leave. Like I said earlier though, we will have to be back here at 9am on Christmas eve morning. Thank you to everyone for all the prayers and support you having been giving our family, we really couldn't have done this without everyone of you.

Well back on the roller coaster ride, the infection has spread. It is now on the other side of her groin area and down her left leg. Bridge also has no appetite again, they think she is backed up even though she has had a couple of loose stool. Bridge has thrown up x2 already this morning. They told us definitely not until Monday or Tuesday would we be able to go home. They want to make sure the infection doesn't continue to spread, so they need to keep her on iv antibiotics and if she can not keep anything down then this will be a big problem.( all her anti-rejection medications are by mouth, not iv). Bridgette also still has a lot of fluid on board her body. She is about 6-7 pounds over her dry weight. Her legs look like the Michelin baby. The key is walking. We walked 13 laps around the nurse's station yesterday and plan to do the same today. They also are still pushing the fluids on Bridgette even though she is 3rd spacing with all the other fluid. They won't send her home until she can drink a minimum of 1.5L. The goal is 2L but they will be ok with the 1.5L. They state that the kidney is still asleep and that it needs to stay hydrated, eventually when the kidney is working 100% it will start emptying the water from her body. If we get released Mon or Tue we have to be back here Christmas eve at 9am for our clinic day. They usually are held on Tue/Fri, but due to the holiday, it has been moved. Did I say that Boston is now becoming my least favorite city. We are supposed to get a huge storm today, I'm kind of excited since there is no snow here, but I really wish we were in the comforts of our home watching it from there instead. Hope everyone is doing well. To my clinic girls, I'm sorry I'm not there. I promise next year I will work everyday, every holiday, you name it. Patty hope you are doing ok, I'm thinking of ya. Love to all, Megan

Bridge finally had her surgery yesterday around 5 pm. They were supposed to bring her down at 1pm for surgery at 2 but they were running late, so we didn't get back to our room until around 7:30pm last night. They removed her dialysis catheter as well as her JP drain and took down her bandage over her incision. I have been telling them for 3 days that I thought she had an infection right below her incision. It is warm and pink and shows some streaking into her groin as well as the top of her right leg they have basically looked at it but never did anything, finally I was like, could you please when you are in surgery with her, take a better look. They came back with telling me that she has cellulitis in that area and will need to be on an antibiotic for 5 days. ( the best part is that most people who develop cellulitis get it in the leg and are immunosupressed, just like miss Bridge, so I have no idea why they wouldn't listen to me), mother knows best. 1 step forward and 2 steps back. This morning Bridge woke up and has a small appetite. She ate 1 roll and has asked for more to drink. If she meets her required intact and continues to void and have a BM then they might release her this weekend. We can not wait to get out of here!!!

Like I said the other day, it is a roller coaster ride. We will not be coming home yet. Bridge has been vomiting since she ate for the last 2 days. They thought possibly the medication could be making her constipated, so they have been giving her medicine to help move things along. She had her catheter out yesterday and we have put her on a toileting schedule as well as a walking schedule to wake things up. Bridge is voiding ok at this point, but now again has gain 6 pounds in 1 day. She had a test called a KUB today to look to see if she has a bowel obstruction or if she has an ileus again like the last surgery. If so, they might have to slip another nasal gastric tube down her nostril into her stomach to decompress all the junk. Let's hope that this is not the case. She goes to the OR today at 2pm to take out her JP drain as well as her dialysis catheter. Unfortunately with this procedure, they have to put her under. Bridge has had a runny nose for days, so now they think that she has caught some type of infection and or cold. We sent nasal sample down to the lab and are awaiting results. Bridge is back on contact precautions as well as airborne precautions. They state that since they have wiped out her immune system it is a delicate balance keeping her from catching something. That is why she will be out of school and why they tell us not to have anyone who has a sore throat, slight cough, etc. to be around Bridge. So I have no idea when we will be home, the team said either if she changes dramatically in the next day or 2 maybe Sunday, but most likely the being of next week. Oh my god, I have to Christmas shop in like 2 days. Will update later today about the OR gig and how that went. Bridgette usually tells me about 20 times a day without exaggeration that she loves me, and since the surgery she hasn't, but today she has told me about 5 times so far, so I know she is getting better. That is the best present I could ever get!!!!!!!!!!!!!

Bridge finally had a good night sleep last night. They woke her every 4 hours to keep up with the pain medication, but otherwise she was sleeping. Mark and I are taking turns at the hotel which is right next to the hospital. Last night I slept there and tonight is Mark's turn to sleep there. 1 of us in always in the room with Bridge. Bridge got her epidural out of her back this am and another iv left over in her right arm, so 2 things gone. Bridge still has no desire to eat, but when the dietitian came in and told her she could have anything she wanted, she ordered pizza and salad and ate several bits, finally! She wanted to remind us though, in case we were unclear, that there was no way she was having dinner. Bridge again has walked the circle x2 with much under the breath loathing. (I can sort of laugh now, so this is a good thing.) The surgeon came in this morning and said possibly we could go home Friday or Sat. They will do something called a VCUG test to check the kidney before they take out the catheter tomorrow. Every day we have education about how our lives will change and how to take the medications. Lots of information and learning, but we will do it. They will take out her dialysis catheter on Thursday if all goes well and she can void(pee) on her own. Then either on Friday or Sat they will take out her other central line and off we go, just to turn around and come back Tuesday/Friday. They told us though since Christmas falls on a Friday, they will move it to Tue and Thur that week, Bridge was very very happy. So that is it for now, will update again later.

Good morning everyone, today is Monday post-op day 4. It has been a roller coaster ride, exactly what they said it would be. One day is good, the next day is bad, and that is how it has been. Yesterday it started out good, but by mid-morning it was horrible. Bridgette has stopped eating and has a rash all over her body. They want Bridge to drink a minimum of 2L and she can't even get anything in. She has 8 extra pounds of fluid on her body which means she is very bloated, especially in her right leg. They thought possibly since it came on so fast that she has a clot in that leg, so at 9:45 at night we are down getting an ultrasound on her leg. She is tired, in pain, swollen everywhere, has a full body rash has an epidural still in her back, triple lumen catheter in her left jugular, dual lumen dialysis catheter in her right jugular, a foley catheter, emptying her bladder and sequential stockings on both legs to help pump the blood up and down so she doesn't develop a clot. It is crazy. The nursing staff during the day has been great, but at night they are all new. Residents, which I'm sure are smart, but really have no common sense, are driving us crazy. There are new residents seeing us 6x a day, from the surgical team, the nephrology team, the pain team, etc.(thank god for the good nursing staffing). Don't get us wrong it is a wonderful hospital but it seems that nobody talks with the other teams. You really have to be a big advocate for the patient. Today they have listened, and improvements have been made. Bridge has been up x3 around the nurse's station today which is a huge accomplishment, the next big thing is you guessed it, she had a BM today, everybody is so "happy". The kidney unfortunately is still asleep. They tell us it is called ATN(Acute tuberal necrosis). They are saying that even though this sounds scary and that part of the kidney has died, that it will just take longer to kick in but should be come back. I asked what the % of people who get this and they said 50%. Then I asked is that with living donor or deceased and they said mainly deceased, so hopefully it will work in our favor. The renal #'s are coming down but very slowly, but they state that they are coming down which is a positive sign, just not as fast as they would like it to have come down though. They also stated that 50% of transplants have some type of rejection in the first year so not to be alarmed. If this happens then we have to come back to the hospital for 3-4 days for iv steroid therapy. The medications regimen we choose for Bridge is very scary, but when we asked the doctors what drug regimen they would choose out of the 3 they stated this one. 2 of the medications that Bridge gets are used also in cancer patients. They are toxic, so we have to wear gloves to give them. The # 1 side effect is skin cancer,(what???) The other medications that Bridge has to take now induces, high cholesterol, high blood pressure and heart disease, so she has to take medication to offset that. We just have to pray that we made the right choice for her. Everyday they throw new information at us so not to overwhelm us, but I think they succeeded. Just want to give a shout out to Kimmy for such a great dinner, thank you Michelle and Dave for dropping it off. Thank you to the girls at the Clinic for the balloons and activities for Miss Bridge, she loves them. They were a huge hit! Thank you to everyone really for all the prayers and support, we couldn't do it without everyone of you.XXXXXXOOOOOOOOO

Today we got moved out of the ICU, YEAH!! The team is amazed at how well Bridge is doing. She so far is excepting her anti-rejection medication seemingly well. She has the occasional itching session, but they give her medication for this which helps. Bridge today is extremely tired, more so than yesterday, but states that she has less pain today. Very moist unproductive cough present but this is expected with all the fluid they originally put in her and how long she was under for. The nursing staff at this hospital are amazing!!!!!!!!!!!! WE got the smack down from administration though for all the people we had coming to see us, so the head nursing member as well as Bridgette's nurse had a talk with us. We are totally fine with that because we are tired to and don't want to get Bridge or us sick. My parents left today as well as Colleen and Paul. Yes that is right, I said Paul. They released him first thing this am. My sister and Paul went to the hotel, took a shower and then he came waltzing into the ICU like he was out for a leisurely stroll. The man is amazing!!!! Bridge was happy to see him but when they left she said, Uncle Paul gave me a kidney that hurts. I'm sorry but sometimes Bridgette is just to cute. The nursing staff from the ICU also asked Bridge before she left if she was going to miss them and she said nope. Matthew went home with Miss Robin Apps, what an angel! She drove all this way just to pick up Matthew and bring him home. As I stated before we weren't allowed anymore visitors, but in Robin fashion, she texts me and states, "we are on 10 south hiding in the bathroom, where is the room?" How great is that. They snuck in and saw Bridge, she was so happy!!!! A huge thank you and lots of love to all the nurses who take care of Bridge and I at dialysis at Albany Medical Center. Celeste, Denise, Ken, Sue, Alan, Laurie and Kiki, Andrew, Jamie and Shana, we love you but are glad we don't have to be there 3x a week anymore. The doctors said we will probably be here till Friday or Saturday if things continue to go well. We have a lot of education now to be taught to Mark and I about all the medications and timing of all of them. We have to be in Boston every Tuesday and Friday mornings by 9am for testing, I believe for the first 6 months and then if everything goes well we then can move one of the mornings to Albany medical center and the other one back in Boston for the following 12 months. It seems like a long haul, but it will fly by I'm sure of it. Thanks again for all the love and will give another update soon.

Well the day finally came and went, and what a day. Bridge was admitted like I said the night before and had medicine to wipe out her immune system so as to less likely reject the new kidney. There are many side effects unfortunately to this but it seemed that Bridgette wasn't getting any of them. The infusion takes 3 hours and at 2 hours and 45 minutes, Bridgette got all the reactions, fever, pain, flu like symptoms, rigors, chills, etc. It was horrible, this lasted about 2 hours and with time and medication she finally fell asleep. Mark and I stayed in the room with Bridge, and I finally left around 4:30am, showered and then went over to Colleen and Paul's room. I stayed with them until it was time for Paul to be admitted at 5:30am at the Brigham. I came back to Children's and walked back into the room around 5:45 and they came to take Bridgette down to pre-op. Mark had of course finally fell asleep, but quickly awoke. We were in pre-op for 2 1/2hours and then they came and got Bridgette. We didn't get to see her again until around 5pm when they brought her to the ICU. Surgery for both Paul and Bridge were close to 6 hours each. We went and saw Paul when he came into the PACU and it was scary, even for me being a nurse, I was taken aback. Paul is long and lean and he looked like a swollen boxer and as white as could be. But in Paul fashion he was cracking jokes and making us feel good, and of course wanted us to know that he still hadn't wavered in his decision. I felt like passing out at that point, but I never let on to him, but it really was emotional. We then went back over to see if Bridge was out yet and she was still in surgery. It seems like years. We watched all day long as everyone else came, sat down, cried, family coming in and then the doctors talking with the families, and then the people leaving. I think we were like the 3rd family there and were the last family to leave. My good friend Michelle came with her incredible, gorgeous 15 month old daughter, who you could just eat every time you see her, this was a great distraction. Bridge finally arrived with her new kidney and many tubes around 5pm to the ICU. She to was very swollen but seemed to be in good pain control. They gave her an epidural in her back with a continuous medication called fentyal that helps with pain control. Bridge also has the option to push a button if more medication is needed, which she has been doing. The kidney unfortunately did not make urine right away. The doctors stated to us that this was not uncommon but that's not what you want to hear. You want to hear, yes, there is urine and the kidney is functioning great, but that didn't happen. Midnight was the shining hour, she started making real urine, not just serosanguinous drainage. She put out around 550ml from 12am to 7am. Since Bridgette's new kidney wasn't functioning earlier on they needed to give her medication to help with her rising potassium levels.(6.0) This didn't seem to be working and her 12 lead ekg was showing some T wave increases(for all the nurses), so they ended up giving her Kayexcelate which they had to do rectally. It was very uncomfortable, but Bridge did great, good results, the next morning. Today Bridge is in much more pain, understandably. We got her up to a chair and the tube taken out of her nose, she is on a nasal cannula now instead of a mask and the urine is flowing. Paul looks like the good old Paul we know and love. He looks great. Paul of course has already walked the hallway with his gown open in the back and gotten up by himself with all the iv's, off his iv pain medicine, and eating a liquid diet without problems. He really is remarkable! Sorry it took me so long to update everyone but I'm sure you all understand. Thank you so much for all the MMSing and emails and voice mails!!!!!!!! We feel loved.............................................

Well we are finally here in Boston. We got here on Tuesday evening before the storm, thank god. Bridge, Matthew, Mark and I had a nice little dinner across the street from the hospital on
Tuesday and were here bright and early Wed for dialysis at 8:30am. Dialysis went great which was another blessing because the team in Albany, who are so amazing, said it was a good thing that she was receiving her transplant because the central line they were using was clearly at its end. Colleen and Paul also came last night and beat the storm. Paul had to get the final ok from the doctors and then the team had to check Bridge before they would start the iv infusion that runs about 3 hours. This medication basically wipes out a special type of white blood cell in the body, actually giving her flu like systems. Prior to infusion they gave her Tylenol and benadryl as well as a type of predisone drug, all iv, so as not to have a reaction when they infuse the big gun drug called "campath". Paul has to be at the hospital tomorrow at 5:30 and I believe they will start his procedure which should take 6 hours around 7am. They will come for Bridge around 7am and get her all ready for the delivery of her new kidney. The doctors all coordinate via phone every step of the way so they will know when to take out and put in. Bridge is currently sleeping which is a good thing. Bridge of course got very anxious about the iv going in, but they promised they would put all the other tubes and drains going in after they put her under tomorrow. They explained to us that she will be intubated, have a new central line, have mostly likely an epidural for pain control, a foley catheter to drain her bladder(yeah) and most likely 2 JP drains, which actually look like little grenades.(These help drain any excess fluid build up). She will be automatically going to the ICU after surgery. The team stated that they usually go to the transplant floor, but with what happened last time post-op they want to be extra cautious with her respiratory status and pain control. We are very happy with this decision!!! Afterwards Bridge will be sent back up to 10South which is the transplant floor. Paul they said should be out of here in 2-3 days, for Bridge they are talking 1-2 weeks. We are all praying we will be home for Christmas. Bridgette will have another infusion of the big drug "campath" the day after surgery to make sure they have the best possible chance for her body keeping the new kidney. Bridge will also start taking all her new medicines that she will need for the rest of her life. They went over them last night with us, it really is overwhelming. Bridge was like, no problem, I can swallow 3 pills at a time now, she is so amazing. We want to thank everyone for all your love and prayers, it means soooo much to both Mark and I and to our families. Will post another blog tomorrow most likely late in the day. Mrs. P good to see you the other day, Laur send me your email. Jack glad you are doing better, we love ya! Thanks to all our friends in VT who are looking after the animals and the house for us, have fun snowmobiling in all the new snow!!!!!!!!!!!!!!!!