Wednesday, March 30, 2011

Wednesday, March 30, 2011 8:33 PM

Some days are so difficult! Our hearts are breaking today for the family we met that wa transfered her last week. Their precious baby girl went to heaven this morning. I hate how unfair this whole process is!! Children should NEVER have to endure so much pain and suffering.
I know I often write and remind each of you to be grateful for each day. But today more than ever I want to remind you to stop and hug your children, tell them you love them and be grateful for every second!! No parent should out - live their child, but unfortunatley in the transplant world that is a very real reality.
Please keep this family in your thoughts and prayers! Their angel is a twin, and they will be returning home to continue to care for her, as they deal with their loss.

Monday, March 28, 2011

Monday, March 28, 2011 11:15 PM

Elizabeth continues to do well, considering she needs new lungs. She is still on alot sedation but does wake up alot. Her pentabarb dose will decrease again tomorrow and if she continues to do well it gets decreased every 4 days. If/when she is able to wean completely off the pentabarb, then we will try to get rid of the clonodine patch and fentanyl drip. She is still tolerating her new formula and it is being increased every 4 days, as she tolerates it. Right now she gets 15 per hour, and her goal is 40 so we will be working on that for a while :)
The biggest news of the day is that she has grown in length! So her status on the transplant list was changed to reflect this new length, we were told that it would increase her donor pool. Since she is "bigger" she could get "bigger" lungs. We will see if it makes a difference.
We learned the transplant team here will be closing the transplant program for about 5 days at the end of next week sometime. There is a transplant convention, and all the doctors/surgeons will be attending. So they will not accept offers for lungs during this time. Kinda disappointing to think that if Elizabeth doesn't get lungs before then, that she could miss an offer, but on the upside I guess we will never know about it. We don't know the exact dates yet, but I will post when we know.
I started thinking about what we were doing this time last year. Elizabeth was in PICU back home after her lung biopsy/PDA ligation. She was very unstable and unable to wean off the ventilator. She was paralyzed, and we were so worried about her. One year ago today were given her official diagnosis for her lung disease, and were actually grateful! Because her disease appeared to be one of the "better ones". One that she could possibly out grow and have a normal life. Crazy to think about how things have changed in a year. How little we have actually been home. How many people we have met. We have been at 5 different hospitals in 3 different states. We have encountered too many medical people to mention. We have lived in hospitals, ronald mcdonald houses, apartments, had 3 different plane rides, numerous ambulance rides. In-home health care, and lots of medical equipment. Matt and I have learned more about the medical field and respiratory issues than either of us ever wanted to know. Even though we would be grateful to never had to experience this, we are also lucky that we have. Experiencing all of this just means that Elizabeth is still here. We will continue to do whatever we have to provide her with the best possible care.
Elizabeth is the most amazing person I have ever met. Because of her I have felt heartache and fear I have never thought possible. But I have also felt strength and love I never thought possible as well. We are so lucky to have been chosen to be her parents, no matter where this journey takes us, we are the lucky ones.

Friday, March 25, 2011

Friday, March 25, 2011 11:53 PM

The infection seems to be clearing! Her past 2 blood cultures show no baterica growing. That is definatley a relief. She seems to have responded well to the antibiotics. No more fevers, no more desatting. They actaully have been able to wean down some on her ventilator settings. Just by 1, but thats still a good sign that she tolerated it. Her sedation wean was halted this week with the infection, and vent decrease. We didnt want to push her too much. So her sedation will be decreased tomorrow. Her feedings were increased today. She seems to be making progess, slowly. Hopefully this will just put her in the best possible place, when her new lungs are ready for her.
  I wanted to pass on to all of you that our fellow transplant buddies, Faith and Wrenn both had good 6 month post transplant reports! We are so grateful and happy for them and their families!! Matt and I were able to meet Faith, and of course see her mom Andrea and grandma while they were in town for the appointments. It really helped to SEE first hand, a little girl who has been through this and is doing well! We also met a new transplant family. They were brought here this week to start the evaluation process for transplant. We would like to ask for prayers for this family, who has been through so much, and starting on this transplant journey. And continued prayers and thoughts for our other friend Jet in St Louis who is waiting along with Elizabeth. These kids have fought and continue to fight so hard to stay with us, they deserve a chance at life. And lastly please pray for ALL of our donor families, they are truly our heros!

Thursday, March 24, 2011

Thursday, March 24, 2011 12:46 PM

Elizabeth is still pretty stable. No major issues with desats, she does it a few times a day to the low 90s but nothing too crazy. And she recovers fairly quick from it. Still waiting for the cultures to grow to determine exactly what bacetria and if meds need to be adjusted for it. I talked to the transplant Dr yesterday and he said they did not plan to remove her or inactivate her on the list. But they would just look at how she was doing and what was going at the time, if an offer comes in. Like I said yesterday she will keep getting blood drawn daily to be cultured until the infection clears, hopefully it will happen quickly.
Nothing new really to add.  Just wanted to remind everyone April is donor awareness month! IF you are not already a donor please consider signing up! I will be more than happy to provide you with any information you need/want. If you are already a donor, I encourage you to spread the word about organ donation and the need for donors. Just by getting 1 person to sign up you could be saving up to 8 lifes!

Wednesday, March 23, 2011

Wednesday, March 23, 2011 12:29 PM

Elizabeth had another fever this morning and was working pretty hard to breath. We just found out that some of her cultures came back. And the infection is in her blood. The cultures from her PICC line and the blood they drew from her other arm are both growing bacteria. They still do not know what bacteria it is, it will take a few days for it to grow out. But the antibiotics she is getting "should" help. I am so frustrated right now, because we know a blood infection is not good, and it would most likely mean not being able to get a transplant if an offer came in for lungs. We won't know for sure until we talk to the transplant team, but from previous disucssions, I am almost positive they would decline an offer until her infection clears. So for now, she will continue on the antibiotics, and get daily blood cultures to see if they are fighting the infection. They may end up pulling the PICC line but we dont know for sure yet.

Tuesday, March 22, 2011

Tuesday, March 22, 2011 10:18 PM

Just a short update, her oxygen is back down to 45% and she seems to resting some. Her saturations have been stable and her fever has went down. Her white blood cell count is up, which we expected. As always it will take a few days for the cultures to grow anything and to know what/where the infection is. For now she IS still listed for transplant, but if an offer came in tonight, they would have to look over all her labs and determine if they would want to go ahead with it. That is the hard part of all this! We want her to get new lungs, but she really needs to be infection-free to ensure that she would do well with transplant/recovery.
Thank you for your prayers and support, we greatly appreciate it!

Tuesday, March 22, 2011 6:44 PM

Well Elizabeth again reminded us we can never get too comfortable with her status or improvements. She again has some sort of infection brewing. When I woke up early this morning her heart rate was up while she was sleeping, I felt there may be something going. When PT came in this morning around 9 and sat her up, she got very upset, started crying, her heart rate went up and she started to desat. Her saturation only dropped to high 80s but it was still a "sign". I left the hospital to shower and go to the grocery store. Matt called me saying she was desatting again, and was not calming down. And to get back to the hospital. When I got here all the Drs, transplant team, nurse, and RT were in the room. Elizabeth had gotten 3 extra doses of sedation. Her saturation had dropped into the 70s and her heart rate had been between 190-over 200, her oxygen had been turned up to 80-100%. They were not sure what was causing her to problems, her lungs looked the same on xray, so we assumed it was infection. She looked so pitiful working so hard to breath. Her body was cold, and she was shivering.  Then she finally spiked a temperature of 101.4, and cultures (trach, urine, blood) have been sent off. She was started on antibiotics again and given tylenol to help with the temp. She is FINALLY resting some but her heart rate is still in the 170s, and she is on 60% oxygen (she has been on 45%). And her temp is only down to 100.6. As we have said in the past, infection can cause her to be removed from the transplant list. Prayers are needed now, that this infection is minor, and will respond quickly to the anitibotics. Also that her lungs and heart do not become overworked dealing with this infection!  Today seems to be rough day for a few other kids waiting for transplant, or evaluation. Please keep all of these children in your thoughts and prayers. 
Like I said before, today is just a reminder to us that we can not be overly exicted about the progress she has made, and take for granted what can happen. Today just reinforces the fact that she needs new lungs. I worry constantly that she may not get them in time. But I hope and pray she does.