Saturday, April 30, 2011

Sunday, May 1, 2011 12:06 AM

Elizabeth has made lots of progress over the past 2 days. On Friday she was the pressure support mode for 11 hours and then Saturday for 12 hours. That means she was basically doing all the work of breathing on her own, just getting a little bit of support and oxygen from the ventilator. They put her back on full support with minimum settings at night to give her a little break. So the hope is maybe tomorrow they will try just doing humidified oxygen with no ventilator during the day. But we will wait and see what they decide to do at rounds. Her sedation was decreased a little today and her feedings were increased, she seems to be tolerating both of those things well. Since most of her meds have been changed over to being given through her feeding tube, they were able to remove the central line that was in her left leg, and hopefully they will be taking the arterial line out of her right leg tonight. And the last 2 chest tubes will hopefully be taken out tomorrow, worst case Monday. But once all of those things are out we can really start working on sitting her up and moving her around more.
Her incision seems to be healing pretty well, it will be a while before all the steri-strips wear off so we can get a really good look at it. The plan for now is still to get us moved out of PICU to PCU (progressive care unit) early next week, maybe Monday. Once we are there Matt and I will start taking over most of her care. Which if you havent learned by now, we are actually looking forward to doing. We have been doing trach care/baths/diaper changes pretty much the whole time we have been here anyway, so the only "new things" will be giving her meds. But we were doing all that before when we were home with her so we dont forsee any issues with taking over :)
We are hoping for a lot of progress over the next few days, the idea of getting out of the hospital is insight. Its an odd feeling to go from waiting everyday to seeing such progress. I cant help but think, when will we have a set back. In the past 16 months, everytime we thought we were on the path for normal something always happened. Its hard not to feel hesitation about things. I want to be super excited about getting out of the hospital and going the apartment, and thinking about HOME possibly in July. But then I remind myself, we thought we were going home MANY times before to only end up right back in the hospital. It will take some time to adjust to all of this.

Thursday, April 28, 2011

Thursday, April 28, 2011 10:28 PM

ELizabeth continues to do great with her new lungs!! Everyday I am thankful to our donor family, seeing her make such progress and be able to "use" this gift is amazing. I cant believe it has already been a week that we got the call. My thoughts and prayers go out to her donor family, I know they are remembering a week ago very differently that I am. But I will forever be grateful to them.

Today alot of her meds were changed to g/jtube so that she has less and less IV drips. Her blood pressure med and insulin were discontinued. Her sedation has continued to be decreased. Her ventilator settings were decreased to a point where she could "come off" the ventilator. But before that happens they give her trial periods of just being on pressure support, where she is doing all of the work of breathing but getting just a little bit of pressure from the vent. They will do this for a few hours a day giving her time to get used to doing the work of breathing on her own. She did really well for 2 hours today. They will increase the time of the trials over the next few days until they feel she is able/ready to do all the work on her own.
They plan to take the dialysis catheter out tomorrow and possibly take out the last 2 chest tubes. If we can get her lasix switched to IV, they may be able to remove the arterial line and central line she has in both her legs and then we can start working on letting her sit up for physical therapy. 

It really is an amazing thing to see all her progress and how well she is doing. She is still pretty drugged up, so she doesnt interact a whole lot. But we know she is breathing better. It's so  crazy to think no more pulmonary hypertension, no more pulmonary intersitital glycogenosis, and no more underdeveloped lungs. I know transplant life not going to be easy, and we will still have lots of hospital visit and most likely more hospital stays. But at least now we know she has a chance to have a somewhat normal life. She will be able to go outside, play and be a happy baby! She has never slept in her bedroom at home, that for sure will be a huge milestone for her and us. Thank You all for your support, prayers and love!

Wednesday, April 27, 2011

Wednesday, April 27, 2011 12:46 PM

Wow! I am losing it. I totally forgot the most important thing in my last post. She has been opening her eyes and looking at us! She has also been wiggling around some and moving her hands/feet. :)

Wednesday, April 27, 2011 11:49 AM

Elizabeth is AMAZING!!

Her vent settings have been decreased more and she is doing great with that. The nitric oxide was turned off last night, and again doing great. They are weaning sedation, 1 med was stopped, 1 was cut in half and the other two will be weaned tomorrow. She will continue of sedation meds, and transition to only getting methadone/ativan at some point. We know the sedation wean will be a long process for her since she has been on some form of it since November. They are holding the dialysis today and hoping to be able to stop it, since she is peeing enough fluid on her own. She will start being fed again today through her J-tube, a very small amount to get her digestive system working again and start working towards getting her to full feeds again. All of her med levels have been good. Her blood sugar has been a little high, so she has been getting insulin off and on through the night/day today. They hope is as they decrease some of her steroids and stop dialysis her glucose level will even out and she won't need insulin. 
Hopefully there will be lots of progress today!

Tuesday, April 26, 2011

Tuesday, April 26, 2011 5:49 PM

Trach is back in. She did really well with it and has been tolerating some ventilator decrease. Hoping for a night of rest for her. Tomorrow will hopefully be a good day for progress.

Sunday, April 24, 2011

Monday, April 25, 2011 12:13 AM

Elizabeth had a rollercoaster day, she made alot of progress in the morning but had some setbacks throughout the day. Her vent settings basically ended up back at where she started or maybe a little higher. They think there is alot of mucus in her lungs, which is normal, and its making her work harder and not letting her lungs work as well as they need too. These things are to be expected, so no one is worried about her progress. She is actaully doing pretty well. As we all know Elizabeth has her own schedule of doing things, so we will just continue to work on "Elizabeth Time" and she will let us know when she is ready :)  She has done really well with getting rid of alot of the extra fluid she had. And they are making a few more changes to start weaning her sedation. She was started again today on the methadone/ativan to help with withdrawl as they start to decrease the sedation. We need to get her to a point where she is awake enough to do the work of breathing so when her vent settings are low enough she will be able to come off the  ventilator and do well with it.  
We are hoping to maybe get moved back down to PICU on Monday sometime. It would be really great if we did, since we know the nurses/doctors down there, and they have cared for Elizabeth for the past 5 months. We have had lots of her PICU nurses and doctors come up here to CVICU to visit her. They are just as excited about her new lungs as we are! They have seen her at her worst, and we cant wait for them to see her sitting up smiling and playing before we leave here.

Saturday, April 23, 2011

Saturday, April 23, 2011 11:09 PM

The surgeons were able to replace her peritoineal dialysis catheter. And the good news, is that it is working! She has had lots of fluid coming off of her and has even started peeing alot more after they started the lasix drip. This is good news since the more fluid they can get off of her the better it is for her lungs. She seems to be resting pretty well with the extra sedation and not working so hard to breath. For now they plan to just let her rest tonight and not make any changes unless they are absolutely needed.  They took the bandage off of her incision today, and it will just be covered with betadine and left open to room air. Its a pretty large incision right under her breast bone across her chest. What an amazing "battle scar" she has :)  This girl has fought so many battles in her short life, and right now I feel like she has won a war!! I know there are many more hurdles she has to overcome and her future is still uncertain. But at least she has a chance now!
 I think I am still slightly in shock. Just seems so crazy that we waited and prayed for lungs for so long, and within less than 24 hours she got the call, had surgery, and was in recovery!
We know Elizabeth's story was aired tonight on Ch3 at home. But they will doing an interview tomorrow with Matt's sister Carie and a phone interview with me. So that should air sometime tomorrow. Also the Times Free Press called today and did an interview with me so that should be in the paper sometime soon as well! We will continue to share Elizabeth's story and the need for organ donation. We are thankful that our wait is over, but there are still over 100,00 people who are waiting for this special gift! We want everyone on that list to feel the same relief, excitement, and even fear that we have, truly amazing!

Saturday, April 23, 2011 3:14 PM

I forgot to add that our entire family would like to thank Crossbridge Church of Cypress, Texas and Pastor Maulsby for bringing all of us food/drinks throughout the day! And Pastor Maulsby for praying with us as we waited during Elizabeth's surgery. Pastor and members of the church have been checking on us for months during our stay here, encouring and praying for us.
~ And of course, Jamie and Brion Posey from home for sharing Elizabeths story with Crossbridge :)
We are so thankful for your support, it means alot to have people who care here with us while we are so far away from home.

Friday, April 22, 2011

Friday, April 22, 2011 6:46 PM

Just met with the surgeon, he said Elizabeth did really well. He said that her lungs were really crappy and he felt that if she had not had the transplant she would not have left the hospital from this admission. WOW! He said they did close the hole in her heart and did the aortapexy (where they fixed the artery compressing her airway). She will most likely be kept sedated for the next couple of days, and intubated by the tube down her nose/throat. She will most likely have her trach put back in early next week. Since she has been on a ventilator for so long, it will most likely take her longer to come of it. So we will just see how she does over the next few days. She will need to work hard to get off the vent and get rid of the trach. The next few days, will show us if her body is going to heal and accept these new lungs. We are so excited about her new gift, but we have to keep in mind that things can still go wrong. 
   We spoke to the pulmonologist about her donor, but he can't give us any information. The only thing that we have heard is that the donor was alot younger than Elizabeth due to the size of lungs she needed. But the surgeon told us the lungs were the perfect size for Elizabeth.
WOW what a day is all I can say!! Seriously there are so many emotions mixed into this. Our "wait" is over for lungs but now a new journey begins. Transplant living is still not easy, but it offers Elizabeth a chance to live outside of a hospital and do some normal things. We want ALL of you to know how much we appreciate your thoughts and prayers over the past year and especially today! We will continue to share Elizabeth's story and use this experience to encourage others to become donors.
We will update again once we see Elizabeth and hopefully post a picture or two.

Friday, April 22, 2011 5:51 PM

Off bypass about an hour now. Should be in her room within 20 mins or so. We will meet with the surgeon to discuss how things went and what all happened. Amazed and blessed!!!

Friday, April 22, 2011 3:24 PM

Last update we got the 2nd lung was being sewn in!! How amazing is that!!! She should be off the bypass within 2 hours. The surgeon wants her to go to the cardiac ICU for a few days. Then we should go back to PICU. She will have a bronch on Saturday. And most likely they plan to put her trach back in within 24-48 hours, and then wean the ventilator and as she progresses eventually get rid of the trach and the vent. I cant even imagine, seeing/holding her without some form of tubing attached! She has been on oxygen or ventilator since she was born.
We will meet with the surgeon once she is done an off bypass and then once she is moved and settled we will go up to see her. I will post more as we know. But so far she is doing good!!

Friday, April 22, 2011 10:09 AM

Our Transplant Coordinator just stopped by and told us that the lungs look good. Elizabeth is doing well, and they continue to get her ready for transplant. She should be on the heart/lung bypass machine within the hour. The surgery is a a very delicate and lenghty process. They will be removing her lungs and sewing in the new ones. Also Elizabeth has a small hole in her heart that they may/may not repair while she is in surgery. And if you remember before I mentioned she may need to have that artery that was compressing her airway lifted and sewn to her sternum. So not only is she have a transplant, but she has 2 other procedures that may/may not happen today. Please continue to pray for her strength to get through this surgery, for the doctors/nurses to care for her. Recovery will not be easy, but we know she is strong and will keep fighting! She has made it so far and been through so much! My mom and sister flew out early this morning and are here now. Matt's dad/stepmom are driving and will be here within a few hours. So thankful for our amazing family.
I keep thinking about the family that is giving Elizabeth her gift of life today.

Friday, April 22, 2011 10:09 AM

Our Transplant Coordinator just stopped by and told us that the lungs look good. Elizabeth is doing well, and they continue to get her ready for transplant. She should be on the heart/lung bypass machine within the hour. The surgery is a a very delicate and lenghty process. They will be removing her lungs and sewing in the new ones. Also Elizabeth has a small hole in her heart that they may/may not repair while she is in surgery. And if you remember before I mentioned she may need to have that artery that was compressing her airway lifted and sewn to her sternum. So not only is she have a transplant, but she has 2 other procedures that may/may not happen today. Please continue to pray for her strength to get through this surgery, for the doctors/nurses to care for her. Recovery will not be easy, but we know she is strong and will keep fighting! She has made it so far and been through so much! My mom and sister flew out early this morning and are here now. Matt's dad/stepmom are driving and will be here within a few hours. So thankful for our amazing family.
I keep thinking about the family that is giving Elizabeth her gift of life today.

Friday, April 22, 2011 8:06 AM

The anesthesiologist came out a little while ago and told us that Elizabeth did well with getting her arterial line and other central line/IV access in place. She is sedated now. They took her trach out and replaced it with a regular ventilator tube, down her throat. They will leave it in place after transplant for a few days and then decide if they will replace the trach or if she does will she wont need it anymore (AWESOME)! They are still waiting for the final word from the team who went to retrieve to donor lungs. Once the team there says the lungs are a go, the team here will begin putting Elizabeth on the heart lung bypass machine and continuing to prepare her for surgery. The "goal" is to have as little down time as possible. That Elizabeth is ready to get the new lung as soon as they arrive here. But the anestheologist said she thinks its looking good!
What an amazing gift she is getting, from an amazingly strong family. I truly hope they can find comfort in knowing they will save my daughter's life!

Tuesday, April 19, 2011

Tuesday, April 19, 2011 9:27 AM

Just a quick update, Elizabeth is still doing well. She had another offer for lungs last night, number 4, and they were again not in good enough condition to be transplanted. At least we know she is getitng offers, and the are closer together now. And she is in a good place to keep waiting. Please keep the family that lost their child in your thoughts and prayers.

Friday, April 15, 2011

Friday, April 15, 2011 8:54 PM

Elizabeth was offically listed as active, again today on the list. So we are back to waiting for our call.

Thursday, April 14, 2011

Thursday, April 14, 2011 3:01 PM

Elizabeth is still doing well, considering. She has tolerated the continued wean of her pentabarb and the increase of her feedings. I dont think I updated but they stopped her the TPN (IV nutrition) so she is just getting IV fluids and her formula now. She is still on the fentanyl drip, clonadine patch and the pentabarb. Her ventilator settings were decreased a little last week, down to 15 on the peep, (She was on 17). So she is tolerating that well too. They had asked about decreasing it again this week but we prefer to wait for transplant to be back and get  their opinion on that before we change it. She seems VERY comfortable, sleeping alot. We have been sitting her up more often since her vent setting are down some, hoping it will help her be ready for transplant and recovery. We held her for a little while earlier this week, and she did well with it. Other than that not much to update. The transplant coordinator stopped by today and told Matt that they plan to reactivate her on the list by noon tomorrow. So we will start waiting for "the call" again.

Sunday, April 10, 2011

Monday, April 11, 2011 12:43 AM

The past few days back here, have seemed so sad. I dont know if its just the events of the past few weeks, with Eden passing away, then the shooting/funeral at home, Elizabeth not getting lungs and now the program being closed. But I am seriously having a hard time with ALL of this. My heart hurts, yes I know it could be worse. But it doesnt make right now, any easier.
The transplant program closed for the week here due to the transplant team attending a conference. They will actaully only be gone a few days, but did not want her to get a transplant and then all of the doctors leave town. So they closed it a few days early. From what we were told, the program will open back up on Friday morning. As of now (based on the UNOS website and my personal knowledge) there are only 3 kids (incluidng Elizabeth) in the 1-5 age range listed as priorty 1. And only Elizabeth and 1 other child are O blood type. So I am hopeful that when organs become avaialble she will get the offer.   I keep thinking, we have been here this long, whats a couple more days, but knowing that an offer could come any minute, and she isn't even eligible for it is very frustrating. But in the end there is nothing I can do to make this happen faster. So I will just try to not totally lose my mind between now an then :)

Friday, April 8, 2011

Friday, April 8, 2011 4:43 PM

So we just learned that Elizabeth got an offer for lungs last night. Her 3rd offer, and they were still not good enough!! We also just found out that the transplant program here, CLOSED today at noon, and Elizabeth is now listed as inactive until Friday. I am pretty upset about all of this, I want so badly for her to be on the road to normal. But at the same time I want her to have the PERFECT lungs. This week has been incrediably difficult and emotional. I sometimes wonder how much more we can take. But then I look around and see, it could always be worse. I am grateful for Elizabeth and her strength. Her new lungs will come, but maybe it will just be the fourth try.
~~~ I am editing this to add in, please keep the family that offered Elizabeth the gift of life in your thoughts and prayers.

Tuesday, April 5, 2011

Tuesday, April 5, 2011 11:52 PM

Elizabeth is still doing well. Her pentabarb (sedation) was decreased again today and she has been more awake tonight. Looking around and chewing on everything :) Matt's mom got in town yesterday, so its good that Elizabeth is awake and able to see her. As I mentioned a fellow officer was killed in the line of duty, I have struggled with wanting to be home for his service. To honor him, and to be there to support my brothers/sisters who have supported us so much over the past year. I will be flying home to Chattanooga in the morning for the 1st time since November, and returning here early Friday morning. I have felt torn between staying with Elizabeth, and going home. But I feel that things just "worked out" for me to be able to go home. Elizabeth is stable and Matt's mom is here to help him. I know the trip home will be heart wrenching in itself, but feel strongly that I need to go. And of course, there is always a chance that Elizabeth will get an offer while I am traveling or once I get home. We already have a plan in place if that happens. And who knows, maybe it will work out that Elizabeth gets an offer just in time for me to turn around and come right back to her :) Wouldn't that be a great way to end a sad trip home!

Monday, April 4, 2011

Monday, April 4, 2011 9:30 PM

Elizabeth continues to truck right along. She is still stable, and I remind myself to be grateful for this. But at the same time I feel horrible for her. Laying in a hospital bed, hooked up to machines to keep her breathing and drugged up is not the life I want for her. "This" has been her life for the past five months (not including all the other times before this). I sometimes wonder how she can stay so strong and keep fighting. But I am thankful that she does. And everyday I wish and pray she can hold on just a little longer until her angel is able to give her the new lungs she needs. She looks so sad sometimes when she is awake, and it breaks my heart. She is 15 months old and has never rolled over, never crawled, never walked, and is no where close to being able to talk. But I know all of these things WILL happen, If she just gets a chance. I find myself wondering what it will be like to see her without any tubes or wires or machines monitoring her 24 hours a day. That is all we have known since she was born. Sometimes I think it is a dream for me to even think this could happen.
   Please continue to pray for her strength and her ability to continue to wait. She has fought so long, and DESERVES the chance to live outside of a hospital bed.

Saturday, April 2, 2011

Saturday, April 2, 2011 10:01 PM

Today was a day filled with good news and bad news, and NONE of it relating to Elizabeth. But a simple reminder of how quickly life can change.

I woke up to an update from Jet's caringbridge page (the little boy that is waiting for lungs in St Louis, who was listed the SAME day as Elizabeth). He got the call early this morning, and just headed back for his surgery a few minutes ago! I am so happy and exicted for him and his family. And praying that these were the perfect lungs for him, and that recovery will be easy and quick. His offer was a reminder that another life was lost today. In order for Jet to get his lungs, someone had to lose their precious baby. The same way someone will suffer a great loss for Elizabeth to get her gift of life. All of this brings back the grief I am feeling for the loss of precious baby Eden earlier this week. I think of her and her amazing parents and sister all the time.
The morning was quickly saddened by the news of a fellow police officer being shot and killed in the line of duty back home. Most of you know that I am a police officer, and love my job and also know that I work for the most amazingly supportive department. They have been behind us 110% throughout this journey. I am devastated for our loss, and for the Sgt's family. I can not imagine how difficult things are at home for all of my brothers and sisters in blue. This is just another reminder of how precious life is, and how quickly it can change.

This week has been filled with so many emotions, and I sometimes wonder why it has to be like this. Please keep all of the families mentioned above in your thoughts and prayers. The days, weeks, months and even years to come will be difficult and challenging for all of them. But this journey has taught me that no matter how horrible things are as long as you are surronded by amazing people you can get through anything.