Thursday, January 10, 2008

Day 39 - We have a plan!

Tristan had a great night last night, he slept really well and his apnea monitor only went off once. Tristan had a pretty good today too, except his apnea monitor went off 4 times.

The excitement for today? We officially switched from Hospice comfort care to Hospice palliative care. Weeks prior to Tristan being born we contacted Hospice, explained our story and arranged for them to be the sole care provider for Tristan. We were placed in the comfort care program which basically means we had weekly nurse visits, 24 hr. on-call nurses for questions and they set up the oxygen, apnea monitor and medical supply deliveries. We have been very happy with the program and the nurses have been so sweet and available for us at any time of the day/night, however Trayc and I having been talking and praying for the last 2 weeks regarding Tristan's future medical care.

When I was pregnant we only went to my OB/GYN appts., we never pursued any other specialists like a neonatologist, a cardiologist, a neurologist because our focus at that point was how to get Tristan here alive not sitting in countless appts. with specialists speaking of the "what if's" because we felt like if the Lord allowed Tristan to be with us past his birth then we would have plenty of time to pursue it then. Well here we are on Day 39, so much further than we ever expected and we have NO PLAN!!! To most people that might be okay, they can just change plans and make decisions quickly, well not us. Trayc and I are planners to the extreme - YES, just ask anyone who knows us, we plan for everything even our children's birthday parties and buy decorations 6 months out, it's true, but hey it works for us!!!! So, last Friday I mentioned to Trayc that we were on Day 33 and had no plan, that I felt like as parents we weren't doing anything but sitting home giving Tristan love, food and oxygen and even though we don't want to take any drastic measures, I feel like we need to do something! So we contacted our sweet pediatrician, who is also a very good friend that has walked this journey with us since August 15th, and asked if she would be willing to take over Tristan's care even though this is not her typical kind of patient and she sweetly agreed. Hey, now we have a plan, oh we feel so much better!!!! We do not take her agreeing to help lightly, T-18 can be very complex, there are a lot of issues and lots of information to research but she is willing to do all of this for us, she is just another person the Lord is truly using in our lives at this time. She saw Tristan on Monday and her first step of action was to prescribe liquid Zantac for his reflex so we are hoping this will help with the fussiness. The second step was to order a heart echo. On August 15th (same day they told us about T-18) the doctors saw a .4mm hole in Tristan's heart so we would like to know the size of it now, it's still there because it was heard by the doctor when he was born. And, she is in the process of exploring treatments for the apnea like caffeine, etc. So we are excited to be switching Hospice programs because this means that Tristan has survived so much longer than we expected when we signed up with Hospice in the beginning.

We realize the Lord has all of this in His control and He may choose to take Tristan before any of these plans are fulfilled, however we feel as though the Lord has also given us Tristan as our precious little boy to love, cherish and take care of and by taking care of him we must make sure we are doing everything possible including exploring future medical options. We are praying that the Lord will continue to guide us in ever decision we make regarding Tristan's future care just like when we were pregnant. We have a heart echo scheduled for Monday so please be praying for the appt., please continue to pray for Tristan's strength, please pray that his apnea will decrease and please pray for us as we face another new day tomorrow.

Jeremiah 29:11-12 says: "For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plan to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you."

Bible notes: God knows the future, and his plans for us are good and full of hope. As long as God, who knows the future, provides our agenda and goes with us as we fulfill his mission, we can have boundless hope. This does not mean that we will be spared pain, suffering or hardship but that God will see us through to a glorious conclusion.


Dee Dee said...

How exciting! Can't you just hear the Lord saying,
For I know the plans I have for you, plans to prosper you and not to harm you, plans to give you hope and a future (Jer. 29:11 NIV)??
We don't know the length of Tristan's future, but we know God's plans are perfect and full of love.

Mary in TN said...

My goodness, I am just so happy for you and your family!!!! I too am a planner, and it must feel so good to have things scheduled for Tristan's care. Our family prays for your family every evening. You and your family have been such a strong life lesson to us as we watch you and your husband live God's will in your personal lives. Thank you!
Many blessings!

Mary in TN

Collins Family said...

Good for you all, Tristan is such a special little boy with a family that LOVES him so much!We will continue to follow and pray for you all, I have Tristan's blog on my prayer blog list so others can come to your site and learn about Tristan and keep you all in their prayers as well. So I hope you find comfort in knowing you have SO many people praying for you all.

Holly said...

Can't wait to hear more about Tristan's progress! It is a very exciting path you are going down. It will be bittersweet, but worth every moment.

We spent the first 6 mos. of Morgan's life doing what you are doing. Although, we had decided from the moment he was diagnosed that we wanted to treat him like any other child, not just a child with t18. We spent most of our time at home just loving on him. We did make the rounds of specialist appts. It was time consuming and difficult, but after you weed out the ones you need and the ones you don't need you can concentrate on Tristan's specific needs. Morgan started receiving early childhood intervention at 6 mos, but I almost wish we had started sooner. He, and we, got so much support from the therapists and teacher that came to our house weekly. I hope you will be able to look into that for Tristan in the future.

Good luck! I am keeping you all in my thoughts and prayers.

Kim said...

I am so glad for this wonderful news for Tristan. He is a beuatiful boy and I am just so glad that you all have had this wonderful precious time with him. Thank you for taking time out to keep us updated!

Rebecca said...

This is exciting news!

I'm still praying.

Laurie said...

I love your hope and this little miracle boy. I'll be praying for your appt. on Monday. Maybe the hole won't be there anymore, you never know what God has planned. Keep loving this little guy with all your heart. So glad you have a plan that sounds so good for this time now.

Laurie in Ca.