Friday, June 14, 2013

One Month

One month out from transplant today.  Tricia continues to slowly improve.  We are finally beginning to tell that she is definitely getting a little stronger...she is walking with a little more pep in her step and a bit further every day at physical therapy.  Her doctors are satisfied with her progress, and her lungs continue to look good.  Her bronch last week showed no signs of rejection, and she is back for another bronch today.

Tricia has had a bit of bleeding from her lungs, and she continues to bring up thick mucus.  Her doctors tell us that because she was so weak, her lungs will improve more slowly than most.  Her transplant and chest tube incisions are healing well.  It will be another few weeks before they remove her staples and her trach.

Her appetite finally began returning a few days ago, and she is able to eat several very small meals a day.  She continues to be on tube feeds, but as we've discovered the past several months, she probably won't gain any weight until she really begins eating more.  Her body is still healing, using a lot of energy to do so, which means the weight will pick up once the healing process slows down as well.

Tricia will have the gastric emptying study on June 20.  This test will determine if she has acid reflux which will determine if she needs a Nissen Fundoplication (what people call a "stomach wrap").  Acid reflux, which can result in acid entering and damaging the lungs, can trigger rejection.  Tricia did not need this surgery after her first transplant, and it's possible her rejection was triggered by acid reflux. Most CF transplant patients at Duke need the stomach wrap.  If she does need this surgery, it could delay our return home by a few more weeks.

As always, thank you for your continued prayer.

Nate

27 comments:

scaryshari said...

I'm very happy to hear that both Tricia's strength and her appetite are returning! :) Slow but steady wins the race! I know that cliche is hard to think about when someone wants to progress faster than they currently are, but at least she's making good progress. Good thoughts continue!!

BTW, I've had problems on & off with acid reflux for many years. Sometimes, if my GERD is really acting up, my asthma acts up as well. I learned that can sometimes be due to a "vapor" (for lack of a better term, sorry) of refluxed stomach acid sneaking into the lungs. So I can totally see how that irritation could be a disaster when the reflux is into donor lungs, rather than a person's own lungs. Any irrigation or inflmmation can trigger rejection, it seems. :( So, I'm glad to know the doctors are being proactive and careful about this. I really hope Tricia does NOT need another surgery, but if the fundoplication is necessary, then at least she'll be having it at an awesome hospital! :)

Hugs from Redwood City, Calif.,
Shari K.W.

Erin said...

I can't believe it has been a month already. I am glad that you are updating the blog. I have missed seeing your facebook and twitter updates but I understand why you trimmed down your facebook friends. I am so happy to hear that Tricia continues to do well. I will continue to keep your miracle family in my prayers! I hope you will all get to go home as a family very soon!

scaryshari said...

Err... I meant to say IRRITATION, not "irrigation" in my comment above. *blush* Sorry about that! It would seem I have my mind on one of my passions: gardening!

Shari K.W.

allyk said...

So happy to hear this wonderful news of continued healing for Tricia. Thank you for continuing to share it with us.

Judy K said...

Thank you for updating! We continue to pray earnestly for all of you! Continuing to pray for the donor family too....what a difficult time they must still be in...To God Be The Glory!

Nana Judy

Stacy said...

So glad things are going well and Tricia is getting stronger.

I follow you on Twitter but have not seen any recent tweets and when I try to link from your blog page I get "that page can't be found".

Vivian said...

thank you for the update! the update filled me with joy for her recovery. i will keep praying for God's healing hand on her.

Wendy Glosser said...

Thank you for the update! It's encouraging to read about the fruit of our prayers. God is so good!

Aspiemom said...

It's so good to read your update. I'm so happy that she's improving, even if it's slowly. I know you're both anxious to get back to the OBX and look forward to that day.

Praying for Tricia to continue to do well and heal.

marcia said...

All things considered, that is a very encouraging update! Thanks for posting. Prayers continue!

sl said...

Thaks for the updates. Prayers continued for your family.

Unknown said...

Hi Nathan,
Thanks so much for the update about Tricia. It sounds that things are slowly improving for her and for that I am thankful. My husband continues to recover from his transplant May 8 so I can appreciate how even the smallest improvement is cause for celebration!

I hope that Tricia will not need the surgery for reflux and will keep her in my prayers that all will be well.

Do take good care of you so that you are strong to take care of Tricia and your children. My thoughts and prayers continue to be with all of you.

Kim in Canada

JB said...

Thanks for the update! Continued prayers from WA for Tricia and all of you. Miss your updates, but totally understand the need to pull back from social media, etc. Blessings to you!
Jennifer

Kathryn said...

Hooray for Tricia! I hope and pray that she continues to heal and grow!

therapink said...

I wanted to thank you for sharing Tricia's/your family's journey with CF. It's a brave and scary thing to do, but I think that despite any negatives, it helps create awareness of what people with CF have to endure. It also gives others the opportunity to pray and provide support.

There's a saying that "it takes a village" to raise children. In a different way, I also think that it takes a village to to help someone with CF. I realized only too recently that we cannot do it alone. And why should we?

Take care, and enjoy every breath!

Theresa said...

Glad to hear Tricia continues improving. I will be praying for her today!

bkmanary said...

Still sending up prayers and still checking in you y'all! Miracles, medicine and time, wonderful blessings
Love from
Brad, Karen, Lauren, Dana
Vancouver, BC
Canada

Becky in VA said...

Love to all!

Krysten & Patrick Clawson said...

Praise God! My mom showed me your blog just after Easter this past year. Your stories of Gods glory are very encouraging to me. I am also a CF husband. Since Easter my wife has spent about 55 days at Johns Hopkins for various reasons. CF is a horrible thing but has brought so many people to Christ. Including me. I wil pray for you and your family's strength. Through Christ all things are possible!

Unknown said...

So happy to hear things are going well.
How did the test go? does she need the other surgery?
Still continuing to pray for you all.

sl said...

Praying for Tricia and your family. HOpe the test went ok and she is getting stronger each day!

lg823 said...

PLEASE PLEASE PLEASE UPDATE US :)

survivingadhd.blogspot.com said...

Would love to read an update on Tricia. Missing reading your tweets. Praying recovery is progressing beautifully.

Melissa
Dallas, TX

Alexis Hudson said...

I hope everything is going well for your family. There hasn't been any news from you in a while, I understand that you are probably busy with being a father and caretaker. I just wanted to let you know that God has put your family on my heart lately and have been praying for you all. Let me know if there is anything I can pray for .

Vivian said...

would love an update on how Tricia is doing...please!

donnalee said...

still praying and hoping things are going well and Tricia is improving daily.

lesliepear said...

Any updates?