Hi everyone! It's been a little bit but have been crazy busy trying to keep up with our little princess lately. She is still having belly issues which started back in December before our family left for Florida to celebrate Christmas. Anyway, this passed week and a half has been eventful. Lindsay was admitted a week and a half ago to get some tests rolling on her belly. The first order of business was to get a PET scan to see if there were any areas that lit up that basically indicated that she had PTLD (post transplant lymphoproliferative disorder). PTLD is a type of cancer that is sometimes found in people fter transplant. Finally on Friday afternoon, they were able to get her in. So incredibly happy to say that that test was negative for PTLD! Yes! However, this means that we don't have an answer yet. Next step is to do an endoscopy and colonoscopy. Biopsies were taken and all looked normal to the naked eye. Now, we wait.............
Lindsay was discharged on Tuesday and was so happy to finally get to eat and drink after having to be on a strict diet to clean out her system and then npo the morning and part of the afternoon of the procedure. things were back to normal on Wednesday and then on Thursday, her diarrhea was worse than ever! I contacted Meg and decided to watch her overnight and decide in the morning on what to do. I called her first thing to let her know that I didn't feel good about how she was doing and then made an appointment with the pediatrician to get a second pair of eyes. Pediatrician sent her for the predictable blood work and sure enough, she was slightly dehydrated. Off to Ann Arbor we go! Ugh! And on a Friday! Double ugh!
So, I finished what errands we needed to run and headed east. Went through the ER and finally was in a room by 11pm. Of course the nurses knew we were on our way and had a private room hook up all set for us :) Lindsay received some fluids in the ER and more overnight to try and solve our problem. On Saturday, she was doing pretty well with her drinking and just ok with her eating. She slept a lot on Saturday but we were thinking that she had also caught some type of virus and was just trying to recover. Who doesn't sleep when they are sick? Well........then comes Sunday. Besides the joy of having my threes boys come visit me on Mother's Day, the day was pretty grim. Lindsay was even more lathqrgic and had absolutely no energy what so ever! She didn't even have enough strength to hold her head up let alone sit up on her own! We lasted until about 2pm or so and I had had enough. She was now throwing up along with the diarrhea and dwindling away before our eyes. I got the attention of a resident that was on the floor and told her that I was done! She was no longer floor status material and she needed more attention! All of the color was disappearing from her face and her belly just kept getting more distended. They called for the ICU fellow to come over and look and she certainly didn't waste any time what so ever moving her to the Pod! Now we're talking! As Kyle so eloquently put it, mama bear roared! Lol when we got her over to the unit, we quickly inserted a ng tube and suctioned out her stomach to try and release the air and whatever else that was causing the distention. So far so good and her stomach went from 61 centimeters down to 54 or so. Progress. In order to get her the fluids that she needed, they really needed to get more access so they started another IV in her foot. That was fun. Not! Her access is horrible and then add being dehydrwted on top of it doesn't help. Lindsay then received boluses of albumin. Took some blood gases to find out that her levels were all out of wack. Her electrolytes were horrible and she was definitely in trouble! Of course, her potassium was one of those items that was low along with others. Her white blood count was fine. Her crit was low so she received some blood and her bi carb of course was low as well. After all of that, she was I,proving but she was still 1.5 liters down in fluid. Not good. So, the decision was made today that she really needed a PICC line placed in order to get the volume that she really needed to get better. While waiting for the go ahead to head to the cath lab for the line, a bunch of stool samples were sent down to the lab along with continuous monitoring of her stats. Again she was npo and ticked to say the least that she couldn't eat or drink before the procedure. Ugh! GI also cam by to discuss our next steps......I think. Mainly came to tell me that everything that they tested so far and biopsies has come back negative. They are treating her for Small Intestinal Bacterial Overgrowth and put her on flagil for that. Not knowing that that is the problem, being on the antibiotic is not going to hurt her but will kill any of the bacteria that they think is growing in her small intestine. W shall see whwt the outcome of that one is! Grrrrrrrr. We she is ready to eat, we are going to start her on a sugar free diet to keep things easy on the colon and go from there. Hoping to have a brainstorming meeting soon to discuss the plan of attack because we still didn't get one. Contemplating a second opinion!!!
The day just got harder after Lindsay line was placed. She had to get a transsapatic PICC line becau her other areas are just not feasable. After that was done and because she was so incredibly dehydrated, she started having trouble. Her cardiac output was starting to decline and all hell broke loose. She needed some epi and dopamine along with more boluses of albumin and whatever else to make her come back! Ugh! She didn't code, but was certainly close to it. Again, we have some wonderful people that care for the princess and we are grateful for them yet once again. Dr. G was there very step of the way and fighting along with us for belly problem solving. I don't think we are leaving the pod until we have it figured out.;) oh Lindsay....how you like to give mommy and daddy heart attacks! Sleep well princess! praying for forward progress tomorrow. Prayer warriors are appreciated!
Monday, May 9, 2011
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Oh my goodness! What a horrid couple of weeks this has been. Praying that some answers are found and she can get back on the mend. Big hugs to you and JR and the kids, I'm sure this was not how any of you were planning to spend mothers day (not that you havent spent special days in the hospital already).
Prayer warriors unite!!! Get this Princess and her Momma home! xxoo
What a terrible weekend. Oddly enough, my cousin Katie was at UofM this weekend too with her two year old who is a year post kidney transplant. She also got a picc line insterted on Sudnay for a nasty infection. Last time Lindsey was there she was there also for pnemonia. Strange. I hope Lindsey gets better SOON!
Always love, hugs, kisses and prayers for our princess and her royal family. Love you whole bunches and big muches/AuntC&UncleR
Please know I am praying for the princess!! I don't know what meds she is on right now but cellcept gave me a very hard time. They ended up changing me to myfortic (another form of cellcept) which I absorbed further down the GI tract and I had no more problems.
Praying for all of you!
Keeping your family in our thoughts and prayers. Always good to hear from you, but would appreciate some better news! ;-) Praying for that to come soon.
Lots of hugs and prayers for questions answered and princess back on the road to recovery so you both come home soon!
Praying for sweet Lindsay! She is a fighter, so is her Momma!
Praying for the princess and the whole family!
I found your blog via twitter. I'm so sorry for your loss.
My Corbin passed away a month ago from heart defects due to Williams SYndrome. Did Lindsay have Williams syndrome? I only ask because she has the same pug nose as Corbin. Find more info here: http://www.williams-syndrome.org/
This is a horrible time for you so I won't say anymore.
Prayers for your family.
I have followed Lindsey story since we met her in the hospital just days after having her heart transplant. My son had open heart surgery for different reasons. I am so sorry to hear of your loss and my prayers go out to your family.
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