Celebrating and Remebering - 9 Months with Angel Lungs

 
Today marks 9 months since Elizabeth's lung transplant. It has been an AMAZING 9 months, filled with progress and lots of milestones for our precious girl. Not a day goes by that we are not thankful for the family who made this possible.  I wont lie, there are days where the fear of her future and the unknown of transplant life creeps in and I get very discouraged and sad. But I have to remind myself ~ everyday is a gift, no matter how short or long this gift is, we have to cherish it. Elizabeth will be a much happier girl, if her momma and daddy are not constantly sad or worried. Its a hard balance that I fight with, but I'm trying.  We are so very thankful for the continued support we get from all of you. We are beyond thankful to our parents and sisters who go out of their way to help us and support us. We could not do this without you!! Caring for Elizabeth can become stressful at times, and they provide us with the much need rest/breaks that help us keep fighting so strongly for her.

 Over the past few weeks, Elizabeth has been meeting so many milestones, it really is like watching a miracle happen everyday. 

Looking like such a BIG GIRL!!

 

 

Loves standing - sometimes ;)

A new facial expression!

Supporting herself with her arms!

Standing supported during PT

Loves her new "big girl" chair

Home

Elizabeth did need a dose of IVIG, which she got yesterday early in the day and her broviac line was removed yesterday evening. She did really well with all of it and we were FINALLY released from the hospital. Unfortunately, the Dr who prescribed her antibiotic to take after being sent home did not verify that it was ok to give via feeding tube. So we then spent 2 hours waiting at Walgreens to figure out an alternative medication or method of administering it. I was on the verge of a breakdown in public when I thought we may end up having to take her back to the hospital if we couldn't get her meds. Needless to say after this admission, we will being sending a formal complaint about some things to Erlanger in hopes of making things better the next time, and to prevent other families from dealing with this same nonesense.

But we are home and she is doing well! Trying to adjust to our schedule again and returning to work tomorrow for both of us.

Still inpatient

Its Baby Jail!!

So we are still at the hospital. After discussing the infection and the fact that it wasnt clearing quickly, and that even if it "gets better" now there is a 25% chance it would get infected again. Matt and I INSISTED that it be removed. Why chance going home to turn around and come back here when she gets another infection. Maybe I'm crazy, but that doesn't sound like a good idea to me.  Our only reason for keeping the broviac was to make blood draw and infusions easier. But convenience is not worth risking her life to save this stupid line. That was on Monday. The "plan" was to check her IGG level and if needed give her the IVIG infusion through the line, then get the line removed, and go home on antibiotics via her feeding tube. Well, someone lost her blood that was supposed to be sent to check the IGG level ~ it was drawn on Saturday. So the new plan is that her blood was redrawn today, and sent to Alabama to be tested. It should be back tomorrow, and then we will either give IVIG if needed or not depending on the level. She will go down to surgery and have the line removed and we will go home. IF for some reason the bloodwork isnt back, we  have already told them to remove the line and we will figure out the IVIG stuff later. This is ridiculous for us to be stuck in a hospital due to someone elses negligence. The longer she has this line in, the harder it is to treat the infection. And the longer we are in the hosptial her chances of getting sick just from being here increases.  Needless to say, Matt and I are VERY frustrated with our experience here. But we are hopeful that things go well tomorrow and we get to go home.

Elizabeth seems to be feeling much better. She is playful and smiling again. I think shes just tired of being here like we are. She busted my lip and bit me yesterday, so I  think shes punishing me for keeping her here :(

Elizabeth has two appointments at Vanderbilt next week, an eye appt, synagsis vaccination appt and an appt with her pulmonologist here at home the week after then her trip to Texas has been rescheduled for the end of the month. BUSY, BUSY month, but again we are grateful for all of it!

1 year since being listed for Transplant

Remembering a year ago today, Elizabeth was listed for  transplant. So crazy how much has changed in a year. And even though we are in the hospital, the difference is amazing and I am so thankful each day, even when things aren't going so well.

Elizabeth seems to be feeling better. They did classify the bacteria today and have changed her antibiotics up to something that will hopefully treat it faster. She hasn't had a fever in 24 hours which is a good sign. The treatment plan is a minimum of 10 days, but we aren't sure yet if we have to stay in the hospital for all of that or if we could go home. Hoping to discuss it more tomorrow. They are also checking her anti-rejection medication levels and her IGG level to be sure we dont need to make any changes with that.

I wanted to share a link with everyone to a video we made to celebrate/remember Elizabeth's 2nd year of life. She turned 2 on December 30th.

http://www.youtube.com/watch?v=1LElN07wBfs&feature=share


Thanks for your continued support!!

A New Year....Another Hospital Admission

So over the past week Elizabeth has been running random low grade fevers a night time. We attributed it to her molars coming in but notified our transplant team in Texas, just in case. They told us to keep an eye on her and if anything changed then we would go from there. Wednesday night I went to work, and Matt was home with Elizabeth. He called me and said she had a fever of 101.6, her heart rate was high, her oxygen levels were low, and she was very upset and crying. We took her to the emergency room thinking she just getting a cold or something, since Matt and I have both been sick this past week. They did lots of labs and did cultures from her broviac (the line that is in her chest we use to draw blood/give IV meds through). Since her temperature went down and her oxygen levels were staying normal we were sent home after spending 7 hours in the emergency room Wed morning. We made it home for about 5 hours when they called telling us to get her back to the ER immediately, that she has an infection in her blood. Her blood cultures had come back growing bacteria and she needed to be started on antibiotics very quickly to try and get it under control.

  So she was admitted to Erlanger Hospital here at home, yesterday. So needless to say our trip to Houston on Sunday for her 9 month evaluation has been cancelled until we can get whatever this is treated. As of now the Drs have started her on a board range antibiotic until the cultures grow more to determine the specific bacteria/germ growing and then they can narrow down the treatment for it. We should get that information sometime tomorrow. Another option being discussed is if the broviac line needs to come out. At this point Matt and I are in agreement that we want it removed, just to prevent this type of thing. The downside of not having it, is that she will have to get stuck for blood draws/IVs instead of the easy access the line has given us. She was pretty pitiful yesterday and wanted to be held all day. Today she seems a little bit better and has played with a few toys. We are hopeful that the antibiotics she is getting now, are making a difference.

Needless to say we are pretty scared, this type of infection is very serious and thankfully it looks like hers was caught early. I'm grateful that we brought her to the ER when we did. It does suck to be in the hospital again. But I keep reminding myself that we had a few good months at home and made it through the holidays and her birthday. Plus, even though shes in the hospital now, its a lot better being in a hospital at home VS being in Nashville or Houston.  We knew going into transplant, life after would not be easy and there would be hospital admissions, and issues to deal with. This is just another dip on the "roller coaster".

Christmas and 2nd Birthday

 Last year we were sitting at Texas Children's Hosptial waiting for Elizabeth to be listed for transplant. And this year, thanks to an amazing God,  Donor Family, Doctors/Nurse/Staff at Erlanger, Vanderbilt, and Texas Childrens, LifeGift and the unwavering support of our family and friends we celebrated  Christmas and Elizabeth's 2nd Birthday at home!!

I have posted pictures from Christmas and her Birthday. Words will never be enough to describe the emotions that went along with the holidays and her birthday this year. I have truly learned what is important in life, and I am so thankful everyday that I was chosen to be Elizabeth's mommy.