Good Morning everyone, good news, Boston called last night to let us know that they did move the surgery to the 10th of December instead of the 17th. We are so glad, hopefully now we will be able to be home for Christmas. The surgeon said that Bridge would probably be in the hospital for 1-2 weeks if no complications with the surgery and if no complications with the immunosuppression medication that she will need to take, otherwise it might be a little longer. This works out for Colleen and Paul, they get to still go on there planned disney vacation, yeah! I keep reminding them whenever I can to all wear a mask on the plane! Bridge started school again. She now goes Tues/Thurs and loves it. Her first day was this Tuesday and she came home so excited about seeing her friends, getting homework and of course doing attendance. We have set up a skype account and will be able to communicate with school, via camera, while at dialysis, she is excited about that. Bridge and Matthew have a halloween parade and dance on Friday. The bus takes the kids into Bondville and drops them off at the bank, then they go to the area businesses, this takes about 1 hour. Bridge and I will then go to Albany for her treatment and be back home around 7pm, just in time for the dance. Matthew will be hooked together with Sean Apps, going as a chain gang, and Bridgette, you guessed it is going to be a High School Cheeleader, with pom poms and all the garb. Hope everyone has a safe halloween, will give updates if anything new changes. Once again thank you to everyone who has supported us!!!!!!!!!!!!!!!!!!!!!!!!!!!! Love Megan

Hi everyone, I am so sorry but I haven't been caught up with writing the blog. I know that it is an excuse , but I actually do have a good one, I am writing so many thank you cards that I can not keep up. Really on a true honest note, thank you so much to everyone that has contributed to Bridgette. Words can't express how much Mark and I feel. It truly is a feeling both of us have never felt before, it really is a true testimony of how Bridge has impacted all of our lives, thank you!!!!!!!!!!! The fund raiser was such a success, thank you so much to everyone who made the trek up to Cold Vermont. We heard it was actually 29 degrees that day. Mark and I received the disc from Brynn, I'm sure Wayne's world had a spin on it, and I know that Kelly, the amazing photographer had her eye on it. Thanks again you guys. You have your own family issues going on and you still took the time for us, we won't forget that one.(Laura and Jim, you are in our prayers) But to get back on track to let you know how it has been going. We were both so happy to come home with our girl, but that quickly turned around, because on Sunday, we returned to the hospital, only this time it was the ER at Albany Med. Thank you Celeste(One of Bridge's amazing dialysis nurses) and to Brynn, our own ER nurse at Albany Med who thankfully got us in right away. Bridge woke up Sunday morning looking like she stepped out of the pages of the Willy Wonka movie. She looked liked the girl who blew up like a balloon. I can use this analogy now, but at the time I was a basket case. We immediately left everything behind and went to the hospital. Half way in route the nurse in me came out and went, oh my god her airway. I really should have called an ambulance but I was caught up in the moment, so for the next hour I asked every 2 minutes, can you breath ok. Needless to say once again my daughter was the teacher, "mom I"m fine, would you leave me alone". Bridge had 1 liter pulled off of her and then we turned around and came back the next morning at 8:30 to have 2 more liters pulled off of her. The doctors stated that this is somewhat normal after having both of your kidneys removed. To me it is not normal, but I'm only a nurse. Bridge had 5 shots today and will return to school next week, I would milk it for all I could if I where her, but she is ready. Boston emailed to let us know that the transplant will possibly be moved up 1 week earlier, so maybe we won't have to spend Christmas in the hospital. Paul where a mask on the plane!!!!!!!!!! Everyone keep your fingers crossed, it could be the 10th of December now instead of the 17th. Will let everyone know the minute I find out. Thank you again for all the love and support, we absolutely could not do this without everyone of you!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Megan and Mark

Today is Wed the 14th of October and we only have 2 more days left until we can go home, YEAH!!!!!! Bridge finally got moved at 10pm last night to a transplant floor, she is out of the ICU. WE are so happy. Bridgette had her central line pulled but unfortunately meant that she would then need a peripheral line placed which she was not to pleased about, that was a little traumatic, but she got over it quickly. I am having them do an ultrasound today on her left leg since there were 2 major lines so close and does complain on and off of pain in that leg only, not the stomach where she had surgery but her leg, I want to make sure that she doesn't have a clot, so that will be done after dialysis today. Bridgette got up and walked the hallway today and felt good, a little weak, but good. She is completely off of oxygen this am and they have stopped her antibotics. The whole team came in this am and told us that she definetely aspirated during intubation and had her lung collasped but they are comfortable with taking her off of all antibotics at this point which is great. She currently is receiving dialysis and her blood pressure, her oxygen and her heart rate are fabulous. blood presure is 114/60 with a pulse of 123 and an oxygen level of 97%. Bridge was able to receive sips of liquid last night and did very well, they have switched her to a soft diet today. It will be very strict fluid restriction again, 1 liter a day only and everything has to be measured, not guessed. Mark and I actually slept in the hotel together last night(no nothing happened) since Nana is here and Bridge is stable, but we were back in first thing this am before rounds. The team also this morning told us that they are putting of the transplant. They feel that her lungs need 7-8 weeks of healing time before they will do the surgery again and this time they already have a different plan of action. Bridge will immediately go to ICU after transplant, not all transplant patients do, they came come to the transplant floot, but they feel that with what has taken place, that she needs closer monitoring. They also said that the pain control issue will be addressed in a different fashion. They feel that she didn't have adequate pain control(enough to deep breath and cough which contributed to her lung filling up) so they will be giving her an epideral as well as mostly likely a pca pump that will automatically give her medication. The other news which we are bummed about is that the transplant now is the 17th of December and most likely will be in the hospital for 2 weeks. They assured us that there are more santa claus's here than anywhere else in the world. They also said we could bring a small artfical tree in, oh yeah, but we will make the best of it. The main focus is Bridge and her health, nothing else. We were told by one of the doctors that at one point he didn't know how the situation would go, it was so touch and go.(blood pressure 50/27, heart rate 207 and oxygen level of 72). I am glad he told me that because I felt the same way, and I didn't know if it was because I am a nurse, or if it was my fear as a mom, so I never verbally said it out loud, but when he did, I just broke down, like holy crap, it was a make or break situation at one point. But my fighter is still here, I mean Bridgette means "The Strong" so what else can I say. Thank you everyone and I mean everyone, don't think we don't know what is going on since we are not home, we get updates all the time and are so thankful to have such a great community filled with friends and family. Love to all, Megan and Mark and Miss Bridge, Matthew also gives his love and thanks, I can't wait to get home and see my boy!

What can I say but ooh my god!! You guys are so amazing, everyone one of you. Mark and I, Bridgette and Matthew thank you from the bottom of our hearts. We heard that the event yesterday for Bridge was amazing. We heard that there was this huge energy, postive energy everywhere. Well that postive engery has found its way here because we moved 2 steps forward yesterday instead of 2 steps back. Bridgette has had such a rough recovery. We already explained that after surgery early the next morning she developed an ileus(bowels asleep, gas in the stomach), she had a tube placed from her nostril down into her stomach. With this tube in, Bridgette has been unable to eat or drink anything, so she hasn't had anything since Wed evening, at this point she has no appetite, we will find out later today if that tube can be pulled. Unfortunately also her right lung has partially collasped due to aspiration pneumonia, she was put on biPap which helps her breath and keep pressure in the lung to keep it open. They believe that she aspirated during intubation. For this they have put her on 3 anitobotics, vanco, clindaymycin and cipro. Because of this you guessed it, she has developed a yeast infection. They also had to put a central line in, which they placed in her femoral vein(right groin area). The first try they actual put it her artery so they decided since they were in the wrong spot, they would put in a aterial pressure line where they could continuously monitor her blood pressure. This was a very traumatic experience for all of us, we were right there in the room and had to help hold down, even with medications on board, she still knew what was going on>>>PAIN. Needless to say that we went from thinking that possibly we could go home on Saturday to thinking when or if she would come home it was so scary. Today, Monday the 12th she has turned a corner. One of her lines was taken out and she was taken off of the biPap. She is now currently on a nasal canula and oxygen level is good. Her blood pressure is still low, she is off the dopamine drip but is still on the noriephrine drip which helps increase her blood pressure which is running very low. Instead of receiving dilaysis 3x a week, she was started on Sunday and will be getting gentle dialyis everyday, so as to not upset her hemostasis. They currently have her in a good place, meaning that she is moving in the forward direction. Bridgette is also receiving physical therapy where they come and pound on her chest and back(literally) to help loosen the consoldation in her right lung, this has helped a lot. Everyone is amazing here. They really are caring and know their stuff, this is the place to be for kids. We got Bridge up to a chair today for 30 minutes which was great, but his completely wiped her out. I think we will be in ICU for 1 more night and if things go well they will move us to a regular floor tommorrow, where I believe we will be there for 2-3 days, so hopefully we will be home by Friday. Thank you again everyone for all the love and good vibes we are feeling here in Boston.
Love to all, Megan, Mark and Miss Bridge
P.S. Since of the complications, the transplant is no longer the 22nd of this month, hopefully it will happen possibly the 3rd of November, and we don't even know if we have a match yet, if we don't then I don't know what we will do next, we'll cross that another day
XO

Hi everyone, sorry it has taken so long to write another blog, but it has been a rollercoaster ride. For the last several weeks we have been working with our 2nd donor(Wendy) and going to Boston as well as her having appointments in Albany to determine if she is a continued match. Our last appointment was Monday the 5th of October in Boston where Wendy underwent series of exams. We left at 5 am and were back in Albany around 5:30pm, feeling very excited from the feedback we had received from everyone. Tuesday night brought about a different emotion, we got the call that Wendy at this time would not be able to be the donor due to some lab work. We all were devasted once again, this is such a emotional rollercoaster for everyone involved, it is hard to describe the feeling but I think the closest would be powerless, we have no control, and just when we think we have a little back, it gets ripped right away again. So that was Tuesday the 6th, now Wed the 7th we were admitted to Children's in Boston to get ready for her double nephrectomy which is the removal of both of her kidneys. Surgery per the surgeon takes 4 hours and would be done laparscopically, but if complications arised it would turn into an open surgery with large incision. Good news it turned into a 2 1/2 hour surgery only and she did great!! She has 4 tiny stab wounds to her abdomen with stitches inside her so nothing to take out later. I had her up walking within 4 hours after the surgery and taking deep breaths and splinting her abdomen and coughing. The nursing staff was like, that is incredible, I haven't told anyone that I am a nurse. This morning the 9th brings a different day. Bridgette had a horible night with pain never seemly getting her under control. Her blood pressure has been very low and her heart rate has been very high with a low oxygen saturation. They did a portable chest xray this am to see if possibly during surgery they nicked her lung or if she could possible have what they call an ileus which is where her stomach is full of air and her intestines are asleep so to speak. Unfortuantely she does have an ileus. They had to drop a nasal gastric tube down her nostril into her abdomen to decompress the stomach, so far that seems to be working but she is completely out of it now, they gave her ativan and her pressure is 60/30 with a heart rate of 145 for all my medical friends out there, and she is currently on her way to having dialysis in 1 hour. During the surgery yesterday, our brother-in-law, Paul who was also a match had further testing done. He drove to Boston and completed the testing, after Paul left and he was here all day, the renal coordinator called and told us that the donor advocate doctor wants more testing. I can only say that both donors have been perfect with all of there #'s and tests, we just don't get it? On top of all this, while we were waiting for Bridgette to get out of surgery yesterday, we had a immunosupression meeting, which is where the doctors discuss the medications Bridge will need to be on the rest of her life. There are 3 regimens to choose from, and we found out that all 3 regimens could bring on high cholesterol, high blood pressure and cancer. Bridgette will need to be on the multiple drugs to keep the kidney from rejection as well as blood pressure medicine, cholesterol medication , antiviral medication for 1 year as well as an antibotic for 1 year, the rest of the medication is for life. Each regimen has a different degree of obtaining cancer, so we have to way that in also. It is so overwhelming, but I know with all the love and support we have been shown by everyone through all of this that we will get through this. Bridge is here for a special reason and she is teaching Mark and I everyday, and we are so lucky to be in her life. We love her so much!!!!! I will let everyone know to what the rest of the day brings. Thank you to everyone who will be participating in the Bridge The Gap race this weekend, have a great time and take lots of pictures.
Love to all, Megan and Mark