Tricia had a sinus infection last week which is now in her lungs. She has been on antibiotics since the beginning of the week, but she woke up this morning with a fever for the first time. The CAMPATH she received a few months ago seems to have slowed or stopped the progression of the rejection, but the damage has been done, and she still has no immune system, so this lung infection could be very dangerous for her.
It has been a very rough year for Tricia so far. This time last year she weighed nearly 50 pounds more than she weighs today and was feeling as healthy as she had in many years. Her weight has not been as low as it is today since she was still in grade school, and her breathing numbers are approaching what they were before her transplant.
We have been back and forth to Duke about a dozen times since the end of the spring, and we are both feeling the effects of spending all of our "free time" on the road and in the hospital. So far, Tricia has not needed O2, but with the winter approaching that may change soon. She had a procedure to place a feeding tube (her third in her life, but first since her transplant) last week which she is utilizing at night while she sleeps for some extra calories.
Her medical team tells us that, as long as she remains "stable" she will not need to be placed on the transplant list, but in the meantime, she is doing as much as she can with testing and physical therapy to be prepared when the time comes to be listed.
Needless to say, we appreciate your prayers right now.
Nate
33 comments:
I promise to pray for Tricia. I also keep you and the children in my prayers daily.
Love, from Kingston, TN.
Kim Waggoner
My thoughts and prayers are with you all once again. I have followed you all off and on for years and pray that God will be with you as you face some more bumps (or boulders) in the road.
Isaiah 26:3
Praying for all of you! As a mom to a little one with severe viral induced asthma, I know the dread one faces as the winter months aproach. Praying that God gives you peace and gives Tricia restful days and strength to face the days that seem too much to bear.
Praying for Tricia and your family.
I'm so sorry you all are going through this again. Praying for complete healing from a miracle working God!
As always, keeping the 3 of you in my heart and thoughts ~~~
So sorry to read this. I am praying for Tricia. Does this mean that the transplanted lungs now have CF ? ( sorry if this is a dumb question. I have no clue how the transplant affects CF)
I have been following you all for years. My prayers have been and will continue to be with your beautiful wife and your family.
~Brigid
Thanks for the update. We will continue to pray for all of you.
Praying that Tricia gets the needed calories to keep up her strength and energy. Praying for God's wisdom as you walk this fragile path. Also for the medical team in treatment decisions. Thanks for the update.
I have been following you for years and am so sorry that you guys are dealing with this. Your guys are in my prayers.
Continuing to pray!
Please know I am praying for Tricia's healing, breathing, weight gain, and comfort that only our Heavenly Father can give. Praying also for you and Gwyneth as well.
Amy Wright
We are praying here. We have read your blog since before your daughter was born. We have seen the Lord work miracles, and will pray the same in your lives now.
Hey there!
I really enjoy and look forward to your postings. Tricia and your family are always in my prayers.. you guys are an inspiration that God uses to help many others around the world like me. God Bless you all and remember that God never Fails!
One big Hug for Tricia :)
I'm sorry that times are tough. I'm sure you're a bit overwhelmed at the moment with all that is going on. But just in case you don't know, you can blend real food for feeding through a tube. My daughter has a g-tube and on my blog I have a page dedicated to making a blenderized diet for tube feeding. I believe that getting real foods is important to good health, especially when the body is fighting. Here's the link address if you are interested: http://www.ainsleyrae.blogspot.com/p/blenderized-diet.html I wish your family the best.
Sending good thoughts and many prayers your way.
Nate, thank you for, once again, sharing personal and intimate details, so that those of us who "know" you only through your blog and the internet can pray for you and Tricia and your whole family. Praying that God makes His presence very evident to you each step of the way!
You say it's been hard for Tricia..I can only assume that it's been hard for you too, watching her go through this, unable to help. While we definitely do worry and pray for her, you also need strength to handle the challenges, to be strong for her, and for the rest of the family.Courage...
Praying for you your family. I have been reading since just after Gwyneth was born. God used Gwyneth to show me that He can do anything, and that when things seem hopeless, that He is still in control- even when we don't understand what He's doing. Your family has a special place in my heart.
It breaks my heart to read that you all are going through this right now.
Linda Martin
I am heartbroken that y'all are going through this! After following the blog & "getting to know" both of you on Facebook, I feel like a member of the family. So this hurts & saddens me for my 'sister'. Lots of prayers for you guys!
I have commented since your sweet girl was born but I always read the latest updates. I will be praying for Tricia and hope she can overcome this obstacle she now faces. God Bless your Family.
Linda from Texas
I'm so sorry to hear about this continuing uphill struggle. May God answer the prayers for Tricia's health, as well as the ones for courage, hope and peace. He is using your situation to bring others to Christ, as your faith and testimony remain strong in spite of your trials. Father God, I lift this family up to You and ask that You would heal Tricia's lung infection soon and help her to regain the weight she has lost. Amen.
I've been thinking about your family and especially more since I took my son to get his driver's license and the organ donor brochures caught my eye. It reminded me of the importance of being willing to share life with someone in need and I thought about Tricia and her journey. Will certainly keep you all in my thoughts and prayers!
we pray every day - many times a day -we love you guys so much, and even though we're far apart you are ALWAYS on our hearts & minds and we constantly lift you up in prayer!
Praying for Tricia, and all of your family.
Praying for the meds to help Tricia to feel better. Praying the feeding tube with increase her weight.
Praying for the meds to help Tricia to feel better. Praying the feeding tube with increase her weight.
To Mama2Kayden, No, Tricia's lungs do not have CF. Cystic Fibrosis is a genetic disease. Her transplanted lungs do not have her genetic make-up, so they are immune to the disease.
In the same way you cannot "catch" CF from someone who has it, as if it was a virus.
What has happened is rejection.
Sending love and prayers. We are standing with you. Thanks for keeping us updated.
Praying!
Praying for you and your dear family.
Praying for you sweet family. Always in my heart and thoughts.
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