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 ;)

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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