Thursday, November 6, 2014

Ready for Home

Elizabeth has continued to make progress. She is still on 1-2 liters of oxygen to maintain her levels, but thats been normal for her when she gets sick. She finished her last dose of IV antibiotics today and also weaned off the methadone and ativan. So now her biggest issue is that her anti-rejection medication levels are low, one is so low its almost as though her body is not absorbing it. Her med doses have been changed multiple times throughout the past week to try and get her levels back in check. Before this illness she had pretty much maintained her levels with no real changes to the doses. Of course, this is really concerning to us and the doctors. She is also having to take magnesium supplements due to her levels being low. So for now the plan is to be released tomorrow, knowing that she will have to continue having labwork done when we get home, possibly multiple times a week until her levels are back to normal. And returning back here in a few weeks for a follow up and then more frequently until we kind of know what kind of damage, if any, this major illness has caused. She will be checked again for signs of rejection when we come back and I am praying for only good reports.

The past few weeks have been hard, after being home and "normal" for 3 1/2 years except for a two short hospital visit.  I honestly question how we made it through those long months in the hospital before/after transplant. Elizabeth absolutely hates the hospital! She refuses to talk to anyone or participate in any of the therapy services that have stopped by.  I actually feel kind of bad for how much she ignores them. But with all she has been through, she just wants to go home. She hasn't talked very much and hasn't stood up or walked much. She is still pretty weak from being so sick, so we know it will take some time for her to recover.  We are hoping being back home and getting back to her normal routine will really help her with getting back on track.

Monday, November 3, 2014

Making Progress

Elizabeth is doing SO much better! She was able to wean off of the ventilator on Friday! She was put on 12L of high flow oxygen and since Friday has been able to wean down to 2L of oxygen via regular nasal cannula. So during the course of last week on top of germs in her lungs another culture came back for pseudomonas from the bronchoscopy that they did here. So she is now getting IV antibiotics, inhaled antibiotics and a vest treatment to loosen up all the gunk in her lungs. On Friday she was very tried and weak and slept alot after they removed the breathing tube and ventilator. She has started watching her movies on the Ipad, smiling and has said a few words. She is also weaning off of the sedation and getting ativan and methadone to help with that. Her little voice is pretty raspy from the tube being in there,  so she hasn't said a whole lot yet. She was able to start sitting up on her own today and moving around some. She did try to walk earlier to Matt and it was SO sweet. She is still pretty weak and it will take a bit for her to get over this. We are beyond thankful she was able to fight this and is recovering. The plan for now is to hopefully be moved from PICU tomorrow to a regular hospital room, finish out the IV antibiotics this week and possibly be discharged home on Friday if she continue to do well and doesn't need more oxygen. We will have to come back in December for the evaluation and testing that was originally scheduled for this week. Her next appts will include a appointment with ENT here to get a second opinion on her airway, and hopefully some good news options for fixing it.  And we will also meet the new cardiologist and get a check on the aortic root dilation. After her checkup in December we will most likely come back more often for a while to be sure that this illness hasn't stirred up possible rejection. Rejection is a big fear for us, and we pray that this illness was just that a bump in the road for her amazing gift of lungs will be undamaged and continue to provide her with MANY more years!

This was one of the scariest times since transplant for us. Its so easy to get caught up in the everyday things when she is well. This was just another reminder to all of us just how quickly things can change, and why we need to make the most of each day we have with her. Just like all of us need to remember its not the quantity of life that matters but the quality. Things like money, houses, cars, and what you have really don't matter at the end of the day. This amazing little girl, her sister, Matt and our family/friends are the important things in my life. I really hope that anyone who knows Elizabeth, or any of our transplant friends, learn from these amazing kids to appreciate all you have in life and know how quickly it can all change!

Wednesday, October 29, 2014


We talked to the Transplant team after they reviewed Elizabeth's biopsy today. Her biopsy shows NO rejection. We are thankful for this answered prayer, but cautious as well. The biopsy was several small pieces of lung from her middle right lobe. Lungs are a huge area in comparison to the small amount that was biopsied. There were some cell changes in her lungs that will continue to be monitored closely. She was still treated with the 3 day steroid dose for acute rejection, just be on the safe side and in hopes that the steroids may also help her lungs with the current illness. But we are thankful at this point the team thinks this illness just hit her really hard. We have no idea how long it will take her to recover from it or what her baseline, as far as needing oxygen will be once she is over it. But we will watch her even more cautiously when she is over this for any changes. She has remained stable today and we hope they can make more ventilator changes tomorrow to work towards getting her off of it soon.

Transfer to Cincinnanti

I apologize in advance if my lack of posting had anyone worried, I have gotten a lot of texts recently. The last few days have been beyond exhausting and worrisome for us.  For those who haven't heard on Monday, Elizabeth appeared to be getting a bit worse. After talking to her transplant team Matt and I decided that we would feel more comfortable with her being with  the her team in case she were to get sicker or needed to be checked or treated for rejection. 
Matt, Charlotte and his dad & step mom all drove up and were here before Elizabeth and I arrived. Elizabeth and I flew out of Chattanooga around 2/230am on Tuesday morning.  It took a while for transport team to get her set up on their equipment. I did get a bit scared while enroute from our home hospital to the airport the Transport Team ran out of oxygen. The ambulance had extra tanks, and the team had to bag here with an oxygen tank to keep her oxygen saturation up.  As a police officer, I am used to riding in a vehicle with lights and sirens. But when its your child in the back and your not sure if she's going to have enough oxygen to make it to your next location, its a whole different story! Thankfully we made it to the plane and they were able to get her transferred onto the oxygen inside of it quickly. She did really well on the flight. Once we got to Cincinnati around 3am the PICU team and our Transplant Team were all waiting for her and us. We have been really impressed here with the care she has gotten and are grateful to feel we made the right choice for her.
Once she was settled they re-cultured everything and did more lab work just have their own records her. She has been able to maintain her oxygen levels and has not required any extra support besides the ventilator and sedation. Her sedation was increased when we arrived to make sure she is comfortable and resting. They have also added more meds to try and get the extra fluid off of her. Transplant felt that another bronchosocpy needed to be done, and also a lung biopsy so that they could determine if she has underlying rejection. She had the bronch/biopsy yesterday and thankfully tolerated the procedure well. We should have those results later tonight/tomorrow.  We are praying she is not in rejection, and that this illness won't set her up it. The Dr did say when he was looking at her lungs they were full of thick mucous from the pneumonia/infection. He was able to remove alot of it and she is now starting airway clearance therapy to help loosen some of that up. Her oxygen requirement has went down to 55% from being on 70-90% before we got here. So we are hopeful that she is really improving and its just taken getting some of that junk out of her lungs and getting fluid off for her to start improving. We still worry about rejection, and as a precaution they started treating her with a 3 day round of high dose steroids that are usually given when someone is suspected of being in rejection. She will get her 3rd dose today. And that may also be what is helping her right now too. So for now the plan is to continue to wean the ventilator until she can come off of it. Start the percussion therapy to loosen up more of the junk in her lungs. Wait for the biopsy results to know for sure about rejection. Starting her feedings back today. And lots of prayers and waiting for our precious girl to get better. She a fighter for sure!

Monday, October 27, 2014

Love my Precious Izzabug

Elizabeth had a little rougher day yesterday. Her oxygen saturation levels started dropping. She dropped as low as 77 but will come back up to 98 with increased support. They think its because of the extra fluids she had to get to help get her blood pressure stable, that Elizabeth's lungs are too wet now. This happened often during transplant, where she needed extra fluids, and then ended up getting out of balance. So it will just take some time to get her fluid levels back in balance, she was started on diuretics to help with that.  So all night her oxygen saturation has been up and down. They have had to adjust her ventilator settings some and as her oxygen saturation fluctuates they have had to adjust the amount of oxygen she gets. So its been up and down a lot.   Her sedation meds were also increased to help keep her calm. They were able to start feeding her a small amount of her regular formula through her feeding tube in addition to giving her TPN (IV nutrition) yesterday. Her blood pressure has been decent and they have been able to get the dopamine down to very low settings and even turned it off earlier this morning but are still watching her blood pressure. She had an echo on her heart this morning so we will meet with Cardiology here at some point to discuss what it shows, I don't expect it to be much different than her what we saw in Texas back in April.  She is still opening her eyes every once in a while, and I feel so bad for her. I hate that she going through all this again, but I know they are taking great care of her here.
I am very thankful that alot of the nurses, resp therapist and all of the doctors in PICU here at home remember her from before transplant. They have been great about answering our questions and doing the very best to care for Elizabeth. We have also been beyond impressed with how great our transplant team from Cincinnati has been as well. They have been in contact with the PICU and with us daily, to ensure we felt comfortable with the care she is getting and to answer any questions or provide any assistance we need. Matt and I have been taking "shifts" at the hospital I stay at night with her and he stays here most of the day. That way we can also spend time with Charlotte. I feel so bad for her, I know she misses Elizabeth and doesn't understand what is going on. Our families have been great about helping out with watching her and sitting with Elizabeth when we need a break. We continue to be thankful for your prayers and support. Elizabeth is a little fighter, and will overcome this!

I also wanted to share something, a few weeks ago Matt and I attend a marriage retreat at Winshape in Rome, GA. One of the songs that was played while we were there reminded me SO much of Elizabeth and her fight, and of how I have had to learn to have faith. I was crying so much while it was playing, and I just knew people thought I was crying because of my marriage ;) But it was because I kept remembering all Elizabeth has been through and all she may still have to endure. I really think God placed this song to be in my head and on my heart to help prepare me for this dip on the roller coaster ride of Elizabeth's journey. I have played it for her a few times while we have been here.
 Blessings by Laura Story:

Saturday, October 25, 2014

Such a strong little fighter!

Just a quick update on how Elizabeth is doing. She was able to weaned down on the dopamine for her blood pressure and her ventilator settings! Prayers were answered today! She seems alot more comfortable today.  Her temperature has been back to normal and her heart rate is alot lower. She seems to be responding well to the antibiotics that were started, and we hope that she continues to improve. She is still sedated and resting, but moves around and opens her eyes every now and then. The bacteria that is growing in her lungs was identified as streptococcus, so the antibiotics are working on that bug. The paraflu is just a virus her body will have to fight. Being on the ventilator will just help her body rest and be able to fight these nasty germs easier. Her immunoglobulin (IGG) level was checked when we got her Thursday and  results came in today showing it was low. So she relieved IVIG today, blood product that will help "boost" her immune system. She used to get infusions every month after transplant but her levels were stable for a while and she didn't need them.  We are hopeful that with the IVIG it will help her be able to fight this even more, and hopefully boost her to be able to stay healthy through the rest of the fall/winter season. So for now the plan is to continue the antibiotics and watch for anymore bacteria to grow in the cultures. They will continue to wean the dopamine and ventilator as she can tolerate it. We are hoping she will be able to start being fed again soon. And Monday they will do an echo of her heart. We know that the aortic root dilation can cause some issues with blood pressure and they just want to check heart to see if that could be what is causing all the low pressures or if its just because she is so sick. Thank you for the prayers and for checking in on us!

Friday, October 24, 2014

3 1/2 Years Post Transplant - And - In the Hospital

Most of you have seen my recent update on Facebook about Elizabeth's current status. Thursday morning around 1am we noticed that her heart rate was higher than normal. That is usually our first sign she is getting sick. She didn't have a fever and her oxygen level was normal so we just assumed she was getting a virus and would follow up with the Doctor once the office opened. Around 530 am Matt woke up and found her to have a 102-103 fever. We gave Tylenol and she stayed awake and seemed to feel better and was playing. From 530 am until around 1230 her need for increased oxygen went from 1L to 4L. Her color was not good, and we knew this was more than an regular virus. She was admitted to the PICU here at home with a fever of 105. After being admitted pulmonlogy did a bronchoscopy to check her lungs and get some fluid for testing. They also drew blood and got urine to test for infections, FLU/RSV test and a viral panel. She was intubated and placed on a ventilator to give her lungs and body a rest. She has some sedation and has been sleeping. Her oxgyen levels have been good and she seems to be tolerating the ventilator well. Her biggest issue has been low blood pressure, and she is currently on medication to help maintain a good pressure.

Her chest xray shows pneumonia and her viral panel shows that she has Paraflu, the bronchoscopy of her lungs shows some bacteria growing, which we are still waiting to be identified. So for a post transplant, immuno-supressed kid this is not the news we wanted to hear. But we know how hard Elizabeth has fought in the past and we know she can do it again. These angel lungs are strong and we know all of her family and friends are praying hard for her!

We were supposed to be headed to Cincinnati on Sunday for her 3 1/2 year lung check up but those appointments are being postponed until she is better. Some people have asked about us transferring there for current care. As long as she is maintaining her current condition, we will continue care here at home. But if she begins to decline we will be transferred to Cincinnati to be where the transplant team can be more involved in her care.

Please continue to pray for her! We hate seeing her so sick and know she can overcome this too!

Saturday, October 4, 2014

Celeberating our Time

So grateful for a busy and illness -free summer! In May we traveled to Orlando for Elizabeth's Make A Wish trip. I can't believe I am just now updating about it!

It was so nice to have a "break" it was our first trip as a family that did not involve medical appointments. Elizabeth and Charlotte both did great and we were able to have alot of fun. We are very thankful to Make A Wish and Heatech who sponsored Elizabeth's trip. Especially since everything had to be rescheduled after she got sick back in October. During our trip we stayed at the Give Kids the World Village. We were able to visit Disney's Magic Kingdom, Animal Kingdom,  and Universal. I think Elizabeth's favorite part was getting to see Dora. They had a character parade where Dora and all her friends came out, Elizabeth was able to meet them all and have her picture made with everyone. Then after the parade was over the had all the wish kids meet up and let them spend more time with the characters. I loved how special they made the kids feel and I know she enjoyed meeting her favorites :)

Elizabeth is doing SO well developmentally and making great progress. She is talking alot more and walking everywhere now. She did get some new inserts for her shoes to help her gait. Ortho still thinks she may need surgery on her hips at some point but we are holding out as long as we can. She is in her last year of preschool! I can not believe how fast she is growing, and she will be starting kindergarten next year. We will start meeting with the school district sometime after the first of the year to decide what school will be best for her and her needs. We really hope we feel comfortable with whereever they offer.

The biggest news as far as Elizabeth's medical care is that we have decided to change hospital/doctors. After MUCH consideration we have decided to move her transplant and other major care from Texas Children's to Cincinnati Children's Hospital.  I had mentioned here before that her primary transplant pulmonlogist and nurse coordinator had moved to Cincinnati to start a transplant program. We have been in contact with them and feel very good about moving her care. Cincinnati is significantly closer to home 6-8 hour drive VS 13-15 hour to Houston. While we have and will travel anywhere we need to get her the best care. Now that we have Charlotte we also have to consider long term, if Elizabeth needs another transplant or were to be hospitalized again we need to be close to family/friends. As well as the trips every 6 months, being closer means missing less work.  We have always had a good relationship with Dr Schecter and are excited that he will now be Elizabeth's primary care doctor again. We realize Cincinnati's program is new, but know the Doctors/Surgeon/Nurse Staff are all from TCH and have significant experience with transplant care. We also feel that being in a newer program, the dr-patient ratio is smaller and may provide for more personal care - at least in the beginning. This was a HUGE decision for us, and we pray that we have made the right one! We will be traveling for her first appointments in October. She will be seen by transplant, cardiology, ent and orthopedics while we are there. We have a packed 4 day schedule during our visit there. We ask for continued prayers for only good news during this trip.

Everyday I see Elizabeth making progress and I can not help but think of how lucky we are that she is still with us! SO many prayers have been answered over the past 3 1/2 years. Some days its easy to get caught up in the routine of just living our lives. I still worry alot about her future, the constant fear of her going into rejection or that her heart will continue to get worse. There are so many unknowns with transplant and her genetic condition. But I have to remind myself Its not up to me to question when, why, or how things will happen. I found this bible verse recently and printed it out. I read it every morning when I get ready.  Its my daily reminder, there is a time for everything. We have and continue to experience many "times" with Elizabeth and now is the time to enjoy life and make the most of the memories we are making with her.
"For everything there is a season, and a time for every purpose under heaven: a time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted; a time to kill, and a time to heal; a time to break down, and a time to build up; a time to weep, and a time to laugh; a time to mourn, and a time to dance; a time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing; a time to seek, and a time to lose; a time to keep, and a time to cast away; a time to rend, and a time to sew; a time to keep silence, and a time to speak;
a time to love, and a time to hate; a time for war, and a time for peace. He hath made everything beautiful in its time."

Wednesday, May 14, 2014

An overdue update & 3 year lung anniversary

It has definatley been a while since I have updated, no news is good news right? :) We had a bit of a rough winter with Elizabeth getting sick but were fortunate enough to stay out of the hospital. She missed alot school during the fall/winter months with viruses/fevers/ and extra oxygen. In December we celebrated an amazing milestone, her 4th Birthday! Hard to believe looking back at how sick she was that she would ever make it that far. On Jan 10 2014, we welcomed our newest little bug, Charlotte Marie into our family. She weighed 8lb 3 oz, and is very healthy. We were so grateful for more answered prayers for her safe arrival and good health. Elizabeth is adjusting well to her new role of Big Sister. She asks to hold Charlotte, and to give her kisses. But she also lets you know when she is "all done with the baby". :)

Some major milestones, Elizabeth now walks on her own without any assistance. Its pretty amazing to see, she is all over the place now. She is still a bit unstable and wabbles some but is doing great. She is still enjoying preschool and playing with her friends. She is talking ALOT more and eating more by mouth. She still has her feeding tube for the majority of her nutrition and still requires oxygen during sleep due to her airway issues. She will start her last year of preschool in the fall, we will start discussing her plan for Kindergarten in February. I can't believe how fast she is growing up!!

In April we traveled to Texas for her 3 year post transplant evaluation. I can not even believe its been 3 years! I am so thankful for all she has accomplished during this time, and all the memories we have been able to make with her. I try to constantly remind myself we knew going into transplant that we need to focus on quality of life, not quantity. Make the most of the time we have regardless of how much that may be. She touches the lives of everyone who knows her, and I am so lucky to be her momma.

Her appointments in Texas consisted of transplant team, neurology, genetics, cardiology, labwork, CT scan of her lungs, Xray of her lungs, an another MRI of her heart. The team chose not to do a bronchoscopy of her lungs this time since she not had any issues as of now. Based on the tests/images her lungs are doing well. Neurology and Genetics didn't have any new information, we just follow up to they can track her progress. But our main concern was her heart, and unfortunately her aortic root has dilated more since her last visit. In previous posts I explained how if she were an adult they would already be considering surgery to replace it. But in children they are monitor it closely and set a threshold for surgery. Elizabeth's aortic root is currently dilated to 2.9 CM with 5 being the cut off for replacement. Based on previous images, the Dr told us its dilating pretty quickly. So we are starting her on a new medication in addition to the heart medication is already taking to help lower blood pressure in hopes that it slows down the dilation and gives us more time before she has to have surgery to replace it. We are really hopeful that it will slow down enough that we have years before we have to put her through such a large surgery again. But we really have no idea how long it will be. She will continue to have checkups every 6 months in Houston for her lungs and heart due to her airway issues and the aortic dilation. Most transplant kids at this stage are only going yearly, but we will go as often and as long as they tell us to ensure she is getting the best care possible.

April was also our time to remember Elizabeth's angel Elijah and his family. Remember the gift they gave, and celebrate the accomplishments Elizabeth has made this past year. We pray for comfort for his family everyday and are constantly reminded how precious this gift of life is.

We thank you all for your continued prayers and support! We ask for specific prayer that this new medication will work and slow down the dilation of her aortic root, and that her lungs continue to do well and stay healthy. I also ask for peace in knowing that hard choices are coming and God will give Matt and I the guidance to do what is best for Elizabeth.