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!!