Monday, December 12, 2011

Trip to Vanderbilt

Today Elizabeth had a rigid bronchoscopy done at Vanderbilt, to check her airway for the "floppiness" that our transplant Dr saw back in October. They wanted to see if there was some granulation tissue blocking her airway from where the trach site is healing, or what could be causing the issue. This floppiness is the reason that Elizabeth still requires oxygen during sleep. She did well with the procedure/anesthesia. They had planned to keep her overnight for observation, but we asked if we could just stay in the area at a hotel to avoid her being in a germy hospital. Thankfully they agreed and she has been sleeping most of the day here at the hotel.

We unfortunatley didnt get the news we were hoping for. The ENT Dr said that her airway appears to be collapsing above where her trach was and further down her airway as well. He did seem pleased that she has not gotten worse, and her oxygen requirement has not increased, it actually has been decreasing and sometimes she doesnt require it at all. He basically said our options at this point are
~To have a CT scan done to make sure there are no other arteries/vessels compressing her airway and if that is the cause - have surgery to correct it. The ENT Dr here recommended that if surgery is necessary we have it done at Texas Children's by the surgeon who did her aortapexy.
~Replace her trach to ensure that her airway is open and she doesnt not go into distress.
~A procedure called stenting where they place a stent in her airway to keep it open, this process would mean trips and procedures about every 3 week at Vanderbilt, for an unknown peroid of time.
~OR Wait it out and see if she can out grow it. Which is possible, but given her low muscle tone, may be unlikely.

Our biggest concern is that if Elizabeth were to get sick and have any inflammation in her airway from a cold, flu or infection, her airway could basically close off. Scary to think about, so for now her trach site will not be closed~just in case a trach needs to be replaced in an emergency situation, we would be able to get an airway to help her.
I realize this isnt the worst news ever, but it definitely not what we want for her. I hate her having to  go through more testing, anesthesia and hosptial visits. But its just another dip on this roller coaster ride we cant seem to get off of!! We will be returning to Vanderbilt in 3 weeks for a follow up with ENT and have the CT Scan done at that time. We will then travel to Houston the week after for her 9 month post transplant evaluation, we will have all the results from the CT done here to take with us and hopefully be able to come up with a plan then.

Other than this news, Elizabeth continues to do well at home. She has remained healthy and is making progress slowly with therapy. Still no crawling, walking, or standing but she will get there in her own time. She is doing well on the new feedings, but has lost some weight so we are trying to get that all figured out. This coming week will be one year since we left Tennessee for Texas, in hopes of saving Elizabeth's life. The trip to Vanderbilt today brought back many memories, and again reminds me no matter what news we receive to remain thankful!

Tuesday, November 29, 2011

A month of Thankfulness

Wow its been a whole month since Ive updated here. Crazy to think, in the past year and half there was always "something" to post about, but usually not always something good. So fewer blogs means that we are busy enjoying this gift of life :)

This time last year Elizabeth was fighting for her life. November 16 2010, Elizabeth turned blue and was unable to recover, that day set into motion our offical journey to transplant. November has been a busy month, filled with thankfulness and rememberance. The events that happened in November last year, will always be a constant reminder to me to be thankful for each and every day - even the bad ones -, a reminder to be thankful for Elizabeth's strength to fight, thankful for those who fought with us to save her and to be thankful for those who have supported us along the way.


At the beginning of November I was asked to be a guest speaker for Donate Life Tenesseee at their Thanks for Giving Ceremony. I gave a short speech about Elizabeth's story, and explained how transplant has affected our lives, It gave me a chance to thank those families who made the choice to save others during  their time of loss. It was a very emotional day. But I am grateful for the chance to share our story, and let those families know what a difference they are making in the lifes of strangers.

During November we achieved a milestone, this was the first time since Elizabeth's birth that we spent more than 3 whole months at home without being hospitalized. Seems like a small thing to celebrate, but in the life of a chronically/critically ill child, These "long stretches" at home are reasons for celebration and something to be thankful for!

We travelled to visit my sister in Augusta, GA, this is the second time Elizabeth has been there but the first time since transplant. She did pretty well on the 4 hour car ride. Again, something to be thankful for, our first trip post transplant - that didnt involve a Dr appointment.

Elizabeth is doing really well as far as making progress with her therapies and adjusting to our "normal" life,which involves her staying at home alot now that its flu/rsv season. As I have posted in the past few months Elizabeth continued to have problems with vomiting. And after seeking help from the GI Dr and not really getting answers that I thought were benefical. I decided to try something on my own. I had researched blederized diets, and how some families of kids with G-tube/nissen fudoplications had issues with vomiting/retching/ and just overall GI issues. I chose to completely stop giving Elizabeth formula and switch her to a blenderized diet. It basically consists of lactose free milk, baby rice cereal, different baby foods -meats, veggies, fruit, olive oil and honey. Since we started this new feeding her vomiting has almost completley resoloved and her other GI issues have gotten better as well. I am actually pretty proud that we made this choice to switch. She acts like she feels so much better, and seems very happy with this transition. Hopefully it will continue!

Like I said its been a busy month  caring for Elizabeth is almost like a full time job, add that to working full time as police officer - on midnight shift, serving in the Navy Reserves, and just dealing with life in general some days I get very overwhelmed. But I have to stop and remind myself of where we were a year ago. It reminds me to be thankful for all of this stress and to make the most of each day regardless. I am lucky to still have my precious girl here with me and no matter how stressful or crappy the day is, when I see her sleeping so peacefully in her bed, smiling at me, or reaching out for me.. I am reminded over and over - I AM THANKFUL FOR HER LIFE!

Friday, October 28, 2011

Celebrating and Remebering - 6 months with Angel Lungs

    "There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle."

The above quote reminded me tonight that each moment, we have with Elizabeth is truly a miracle. October 22 was Elizabeth's 6 month post transplant date. We spent the day at a baby shower celebrating the upcoming arrival of my best friend's baby boy, who just so happens to be due on Elizabeth's 2nd Birthday. Some days it seems like yesterday that we were sitting a hospital praying for her gift of life, and other days it seems like its so far in the past. But EVERYDAY I remember how hard she fought to stay with us and everyday I am grateful for this gift and the family that helped make our miracles possible.

Elizabeth continues to do well at home and is making lots of progress with physical and occupational therapy. Our biggest concern right now is that she is still vomiting frequently. We have a referral to see a GI doctor next week to try and get this figured out. She is always smiling and seems so happy almost all of the time. We do struggle with a sleep schedule. She wants to stay awake ALOT. Sometimes I think she just wants to make up for lost time. :) Plus me working midnight shift and Matt working dayshift tends to confuse her some I think.

We recently had some pictures taken and I wanted to share them with those who may not have seen them on Facebook. A great big thank you to Breanna Hodges Photograhy. She did an amazing job, and was wonderful to work with!



Monday, October 17, 2011

Back to "Normal"

On Thursday Elizabeth had her appointment with Neurology at Texas Children's. The Dr seemed happy with the progress she is making and feels that an MRI isnt necessary in January. He has recommended that we do a transcranial doppler study in April when we return for her 1 year post transplant evaluation. We know based on her Filamin A diagnosis that she may have some intellecutal/devleopmental delays but at this point we still dont know how much of her delays are caused by her just being so sick for so long. We will just monitor things and keep providing her with the best therapy possible here at home.

Houston to Atlanta Flight
Friday we checked out of the Ronald Mcdonald House and headed to the airport in Houston to come home. We got there super early to be sure we didnt have issues with security. Thankfully all of that went well. We were sitting at the gate playing with Elizabeth and her feeding tube got stuck underneath her stroller wheel. And her g-button got yanked out of her stomach. Needless to say we panicked for a second and then quickly got the supplies together to put it back in. She was pretty upset, which is to be expected when you get a ballon yanked out, she was crying and holding her breath so much that she started to turn blue and she started throwing up. We were finally able to get oxygen on her, calm her down and Matt was got the g-button back in place. She did well on the plane from Houston to Atlanta and then our flight out of Atlanta was delayed for about 2.5 hours. She got really upset when we first took off and again turned blue, we were able to get oxygen on her and calmed her down. She fell asleep for the 30 minute flight to Chattanooga.
Waiting at the airport

Saturday was Matt's Birthday. Since we got home so late and Elizabeth having the "blue spells" on Friday, I ended up not going to drill on Saturday and spent the day making sure she was doing ok. The Navy Birthday Ball was Saturday night and Matt and I felt comfortable leaving Elizabeth. My mom watched her for a few hours. This was the first time since being home that we have left her for more than an hour. I was pretty nervous but it was good to get out for a few hours.
Before Mom/Dad left for the Navy Ball

Last night we went to dinner with some of our close friends to celebrate Matt's birthday. Elizabeth was a little fussy/sleepy but overall she usually does really well when we go out in public. When we are home we usually let her lay in the floor to play/roll around. Last night for the first time Elizabeth rolled over. She was laying on her back playing and rolled to her side, she kept trying to get all the way over and finally she did ~ ALL ON HER OWN!! I was so proud of her. It really is the small things that are big steps for her! Seeing her do normal things and making such progress reminds me of how far she has come. 

  So for now we are back to our new normal. Elizabeth will continue with her weekly physical/occupational therapy appointments. We will still get her monthly labs/IVIG infusions at home. She will go within the next 2 weeks to get her flu shot and most likely the synagisis vaccination (for RSV). The biggest change is that we will become even more vigilant about germs, since flu/rsv season is here. Elizabeth HAS to stay as healthy as possible. We realize our purpose in transplant was to give her a chance at living and doing normal things. We are still working on finding "the balance" with all of this, we want to experience normal things like going places and being around family/friends but we have to limit her exposure to germs. I'm starting to think we should buy stock in clorox, lysol, and hand sanitizer :) We will be keeping them in business for years to come!!

Thursday, October 13, 2011

6 Month Post Transplant Evaluation - Houston, TX

I cant even beleive its been (almost) 6 months since her transplant! Everyday I am amazed how far she has come in such a short amount of time.  It still doesnt seem real most days, all the we have experienced and been through over the past year and a half. And all of the amazing people we have met along the way.  Being back in Houston is a flood of memories for me. This is the place where I worried so much we would lose Elizabeth and its the place where she was given her 2nd chance at life. Its so strange to have such sad and joyful memories all in one place!

  Our week in Houston has been pretty busy. We flew to Houston from Chattanooga on Sunday. This was Elizabeth's 1st non-medical flight! We were pretty worried about how she would do, but thankfully she did great! She slept pretty much the whole time. The biggest issue we had as the excessive amount of "stuff" we have to travel with. Since she is still on oxygen during sleep. We had to have a portable oxygen concentrator, her pulse oximeter, her feeding pump/supplies, diaper bag with normal baby stuff, stroller, and of course who could forget all those meds she takes!! Needless to say Airport Security looked at us like we were crazy, but they were very helpful once I explained why we needed everything and the process was pretty simple. Hopefully the return flight home tomorrow will be as good.

Monday - We met with the transplant team and discussed some of our concerns regarding the lack of organization/communication we have experienced at home, and hopefully have a plan in place now to releive some of the stress for me. Since we have been home I spend hours each day on the phone everyday trying to get stuff taken care of, hopefully that will no longer be the case now. Elizabeth had a CT scan and an xray of her lungs done as well. We also discussed her weight loss, back in August they had decided to decrease her calories since she was so chunky and was well above the recommeded weight in regards to her height. She has lost about 4-6 lbs since August. So they wanted to adjust her feedings to add more calories to get her back on track with normal growth. Our biggest concern with all of this is that she has not actually grown in length since April. We will continue to monitor it and decide if she needs to have testing done to check her thyroid or hormone levels. She has been on steroids since was 3 months old and that could be greatly affecting her growth. We will revisit that issue when we come back to Houston in Jan.
Nicole, Jessica, Shelly ,Karen, Angela ~ Some of E's Favorite Nurses :)
   On Monday night we met up for dinner with 5 of our amazing nurses from TCH PICU. These wonderful ladies cared for Elizabeth during her entire stay in the PICU. They have become our friends, and some the biggest supporters of Elizabeth. I know without their care and support our stay here would have been alot more difficult. We only hope they know how much they mean to us!

Waiting for her bronch

Tuesday - We were up bright and early to be at the hospital at 630 for Elizabeth's bronchoscopy. She did pretty well with being sedated. The Dr said her lungs look good, but we wont have results from the test for a few more days to know if there are any infections. Her at TCH they do not do biopsies on smaller children unless they are having difficulties, so we wont really have an idea of rejection issues. The biggest concern the Dr had was that her airway seemed very narrow. He wants us to follow up with ENT at Vanderbilt within the month for her to have a rigid brochoscopy (where they use a different scope) to check her airway.  This doesnt mean that anything is wrong just that it needs to be looked at. Her narrow airway may be a major factor in why we cant get rid of the oxygen during sleep. ENT may need to do surgery if they find excess tissue in the airway, or they may feel she can grow out of it. Our Dr here is going to contact ENT in Nasvhille, so we will plan for that trip soon. They also did all of her lab work, and everything came back great. All of her anti-rejection medication levels are good. 
Dinner at Rainforest Cafe

Wednesday - We spent 5 hours in the infusion center getting her monthly IVIG infusion. She did really well, other than throwing up all over the place :) We "should" have this set to start getting the infusions at home starting in November which will be alot easier than sitting at the hospital for 5 hours out of a day. While we were waiting for her infusion, I decided to go and get copies of all of her medical records (yea, its a BIG book) which included a pathology report of what they found when they took her "old" lungs out. Its amazing to actually read about how bad they were. I truly feel lucky that she survived as long as she did with the lungs that she was born with!! We also had our summary checkout with the Transplant and basically went over all the tests/results. Basically they feel she is doing really well. Just continue with her therapies at home, no medication changes, and follow up with ENT.  We will be back to Houston in January for her 9 month evaluation.

A new "normal" for us, Elizabeth had her 1st trip to the Zoo :)

Today - We have an appointment at 1pm today with Neurology. We will most likely just discuss Elizabeth's developemental progress and any issues that we have noticed. Based on our past discussions she will be scheduled for another MRI of her brain during our January visit to see if there have been any changes in her brain. I think part of me feels relieved reagrding her neurological status since her diagnosis with FILAMIN A.

Our Miracle!

I apologize for this post being so long! I have been meaning to update daily, but its been hectic around here :) Please know that we continue to be grateful for the all of the support, prayers, and encouragement that you all give us. Elizabeth is an amazing little fighter, and we are so blessed to have been chosen as her parents!!

Friday, September 30, 2011

Trip to Vanderbilt -Nashville, TN

Elizabeth continues to do well, and is making progress with PT and OT. We stayed the night in Nashville last night since Elizabeth had appointments with Cardiology and ENT today at Vanderbilt. Both appointments went well. We went to see ENT since there is still a small opening in her throat where her trach was. It has gotten significantly smaller but has not totally closed. He wants to give it a little more time, and make it through the winter without putting her in the hospital. So his plan is to schedule her for surgery in March to have it closed, which means an overnight stay inpatient at Vanderbilt. When she was seen by cardiology they did an echo of her heart, and compared it to what they had in November/Decemeber (when she was on the verge of going on ECMO and so so sick). Her Dr was impressed with how well she is doing and how much better her heart looks compared to before transplant. He also wanted her to wear a halter monitor for 24 hours, so that we can better determine what we need to do if anything with the heart medication she is on that is helping with her blood pressure, and irregular heart beats.
Of course we couldn't visit Vanderbilt with out seeing two of the most important people who helped us and Elizabeth make it from Nashville to Houston. Our PICU case manager Diane, and our Pulmonary Fellow Dr Soares. I don't think either of them know just how much they mean to us. They both helped us so much through all of Elizabeth's hospitalizations there, the decision to get her trach/vent and then the agonizing stay in November/December when Elizabeth was so sick and unstable we thought we were going to lose her.  It was good to see them, and be able to show the progress that Elizabeth has made. We also had a visit with our friend Chris at Harlow Salon in Nashville ~ I HIGHLY RECOMMEND HIM :). I met him back in July and stopped by again in November to get my hair cut/colored while we were staying in Nashville and he became a big supporter of Elizabeth. He has become a great friend to us and we were glad to get to visit for a little while.

   Before we left for Nashville I was dreading the trip. The memories of the last time we were there started to flood back. I hope and pray we are never in that place again, seeing Elizabeth so sick and on the verge of ECMO and struggling to stay alive. But deep down in my heart, I know that transplant is not a cure, and we will at some point in her life be faced with these things again in some form or fashion. I try so hard to keep those thoughts out of my head and just try to enjoy the now, but its a work in progress.  I realize that every day with her truly is a gift, and I am  trying my best to not worry so much about tomorrow, but its easier said than done. I have this overwhelming fear of every Dr appointment she has, that they will find something else "wrong" with Elizabeth. Our trip to Houston for her 6 month evaluation is coming up in 9 days and I almost feel sick thinking about it. I sometimes wonder if this fear I have will ever go away, but at the same time this fear is a constant reminder to me to be thankful even for the bad days.

Monday, September 19, 2011

New "Normal" and a Cold

Since my last post Matt and I have both returned to work. So life is somewhat back to normal for us.  It has definately been an adjustment! Matt works day shift and I work midnight shift, so one of us is always here with Elizabeth. And I went back to drill for the Navy Reserves last weekend.  She has had numerous appointments over the past few weeks with hematology, pulmonology, physical therapy and occupational therapy.  We now sorta have a schedule down for her therapies and all of the equipment she needs has been or will be ordered this week. Elizabeth got her 1st dose of IVIG since being back home on Wednesday last week. She had to be admitted to the hospital for the day to get it done, we are hoping to have it set up to do in home by her next dose in October.  We noticed that she had a cough that seemed to get worse and on Friday we went to see her pulmonologist who did a viral panel. It came back as rhinovirus basically she has a cold, which in the grand scheme of things isnt the worst possible thing, but its still not good for her. She ran a fever on Friday night and was pitiful on Saturday and needed to wear oxygen all day to keep her oxygen saturation levels up. She slept alot on Saturday and yesterday seemed to be doing alot better.  Other than dealing with issues as they arrive with insurance, medications, and equipment life here is headed to a much more "normal" for us.

Its an amazing feeling to sleep in my own home, in my own bed and wake up at night and look over to see the most precious little girl sleeping in her bed next to me. Everyday I am grateful for her donor family, everytime I see her smile or watch her sleep I am reminded of just how important those "small things" are. I know her donor family would love to see those things happening with their child, I am so thankful to them for giving my daughter a second chance.

Sunday, August 28, 2011

Home Sweet Home and the BIG Suessical Party

We arrived home in Tennessee on Friday August 19th. I wanted to update sooner, but life has been busy around here! Trying to get her medical/feeding supplies and all the pharmacy stuff switched over.  On top of  moving all the stuff we accumulated in 8 months of living in Texas into our house that was already full of our stuff, we have been de-cluttering and trying to organize. Thankfully we have been able to throw away tons of old ventilator and trach supplies that were taking over Elizabeth's room so that has been a big help. Elizabeth had an appointment with her pediatrician here and will see her pulmonologist next week. We also have appointments set of for hematology and cardiology within the month, just to get everyone here in Tennessee up to date on her status.

Elizabeth's big Suessical Welcome Home Party was yesterday. We had over 200 people show up plus 2 news stations here to cover her story. We had table set up from Tennessee Donor Services, the TN organ procurement center to help promote awareness as well. I hope everyone enjoyed themselves. I loved planning the party with all the themed foods and decorations.  I know some people probably think we are cray for having her around that many people but I think we did well with still controlling the environment. There were many signs hung reminding people to sanitize their hands, 2 large bottles of sanitizer on the sign in table and small bottles on all the tables. Plus Matt and I kept Elizabeth close to us and tried to limit anyone else holding her. Its all part of trying to not live in the bubble but still keep her as safe/healthy as possible.

I am reminded daily of how blessed and lucky we are to have her with us. She has fought so hard to get to this point and continues to amaze me. I am thankful everyday for the family who saved Elizabeth's life. We think of our donor family everyday, especially the precious angel who is watching over Elizabeth.

Here are the links to the news stories from her party if anyone is interested in seeing them:

Elizabeth Wren Jetton

Elizabeth, Grammy and Paw (my parents)

Elizabeth and "Aunt" Latisha (My Best Friend)

ALWAYS the center of attention ;)

Add caption

We released balloons for Elizabeth's Donor Angel with a note attached

Wednesday, August 17, 2011

Last Test in Texas (at least for a few months)

The past two weeks have been filled with day-long trips to the hospital. Yesterday Elizabeth had her 3 month post transplant bronchoscopy (yes its almost a month late so technically we are almost at 4 months post transplant). She did well with the bronch and we should have some result back within a few days but the Dr said things looked really good and he was happy with how she is doing and how her lungs look. Our FINAL appointment is Thursday morning to go over all of her recent tests and make sure that we are ready to go home.

Waiting for her bronchoscopy 8/16/11

We are excited about going home, but nervous at the same time. We have spent the past year living each day scared and worried about Elizabeth and her condition, never knowing what might happen. We now feel more secure about how stable she but know that could change anytime. The fear of her getting sick or her body starting to reject her new lungs will always be in our minds. But we want to try and focus on the good things and how well she is doing and to make the most of the good days.

Tuesday, August 2, 2011

Trach Free (for good!!)

Sorry for the delay in updating, things have been busy here. Elizabeth was finally released from the hospital on Thurs July 28 (my 30th bday), trach free!!! Definitely the best birthday present ever. She did have the sleep study done on Wed night, which showed she needs oxygen during sleep. She did have some obstructive apnea but the Dr was not overly concerned about it and felt confident she will outgrow it. She has done really well at home, we think having the trach out has made her alot happier.
  Yesterday she had clinic with the transplant team and we started discussing the things we need to get done before going home. As of now the plan is Mon next week she will have another Ph probe placed to check for reflux, and again we will discuss the need for the surgery to redo the nissen fundoplication. I am hopeful this probe will still show a small amount of reflux and we wont have to have the surgery done. She will also get the IVIG infusion, and we will plan to continue this monthly at home for at least 6 months. Which means we may be leaving her broviac line in place instead of pulling it. If we keep it she wont have to get stuck for an IV every month, but if we keep it she will continue to have a source for infection, and we will continue to need to care for the line daily. So that one is still up in the air.  They are also scheduling another ultrasound of her arms/legs to check for blood clots. Her last one showed none, but we want to be sure before we decide on stopping the blood thinner injections. Then the following Mon Aug 15 she will be sedated to have pulmonary function testing done. And that Fri Aug 19 she will have the bronch done. If all of this goes as scheduled without complications we "should" be returning home to TN that weekend. I am pretty excited that home is "insight" but I also know better than to get my hopes up, with Elizabeth this could change quickly. So we will just take it week by week and see how it goes.

July 28 - 'home" without a trach!

Elizabeth wearing her oxygen for bedtime