Thankful for the little things!

We are so thankful for Jake's progress since we've been home. We have had much time to rest after 15 days at TCH and Jake is recovering beautifully. He went back to school today - only for a half-day,  a little thing, but no less another answer to pray.  He did great, but was really tired all afternoon and of course took a nap.

The Home Health Care nurse came today to change his dressing and give us our last week of IV antibiotics (hopefully). God has truly put incredible people in our path throughout this journey. What a blessing it has been to meet such special people in the medical field. I truly believe chosen by God to care for others. What a gift!

Last week Jake's "Super Sixth" period class came to the house. It was so awesome to see him with his class and precious Mrs. McGowan. I love her and am endeared to her for that random act of kindness. They brought pizza, gifts and even wrote him a poem entitled, "Jake the Great." It went like this:

Jake, we are writing to you when times could be better

But we're here to bring you a little sunshine by writing this letter.

You better heal up, get better or bust

We brought you a tasty gift, with cheese and pepperoni, thin and thick crust.

We just want you to know that you are missed and loved

We brought you food, a card, and balloons, but best of all big bear hugs.

So get well soon, without you it's hard to start

Our love for you runs from our veins directly to our heart.

So come back to us lickity split,

The Lord loves you and without you we aren't Super Sixth.

Isn't that WONDERFUL?

Thank you Super Sixth, ya'll are the best. You can come over and hang out here anytime!

Jake will finish school this week with half days and then prayerfully start full time next week.

He has a check up tomorrow with the cardiologist. Please pray specifically for the right ventricle function and that this would be the last week of the IV. He is so ready to get that thing out of his arm!

BLESSINGS!

Recovery

Jake's recovery is going well. He is feeling better and better everyday and is finally getting rest after 15 days of interrupted hospital nights! He is still on IV antibiotics he gets twice a day, but really is not limited to activities other than carrying anything over 5 lbs, riding in the front seat of a car (he has to be chauffered) and he can't drive. 

We continue to ask for your prayers for Jake's total recovery. He is now off all blood pressure meds and as soon as he finishes the antibiotics will only take a baby aspirin a day. 

We go back for an appointment with his cardiologist, Dr. Nihill next week and he will also start school next week. God is soooo good! 

Thank you for all your prayers and encouragement.

Philippians 1:3-5, "We thank our God in all our rememberences of you, always in every prayer of mine for you all making our prayer with joy, because of our partnership in the gospel from the first day until now."

Our last night at TCH! WOOHOO!

Dr. Morales did not perform Victoria's surgery. I found out there was also a boy on the floor who is 13. He was also waiting on a heart and he and Victoria went in at the same time last night for heart transplants. Dr. Morales performed his surgery, not Victoria's, but I heard they are both doing ok in ICU. 

Well, our last night here! We ended the evening with a visit from the Curry's! Randy brought Jake a nice sticker book to challenge him and keep his brain sharpened! Yesterday we had a nice visit from Jim Hughes, my sister and neice, Gaynor, who btw brought a yummy homemade salad for us and a chicken fried steak for Jake. He was loving that! Can't forget about Steve and B-Rod to end the evening!

Then today before The Curry's, sweet Stacey Beasley brought lunch and she and Jake had a NICE conversation about the BCS and the Texas/Ohio State game. We had to check Jake's heart rate afterwards....

AND of course, sweet Jenn has been the best big sis ever....taking orders from him with trips to Sonic for Cherry Sprites and taking care of his dog, and getting us lunch and dinner....coming up here everyday and being such an encouragement. We love you! Thank you for all you've done for us. You're the best!

We have been so loved and taken care of. We cannot say thank you enough for all of you who have prayed for us, loved us, brought food, texted, emailed and for those who made the long trip down here. It is not an easy place to visit and it is not cheap to park, so it meant so much to have you encourage us here. We will never forgot how you made Jake smile by your visits and walks around the hospital! He truly is doing so much better-he looks great and is just generally feeling more energetic everyday.

Please continue to pray for his recovery at home. He's already talking about all the things he's going to do, so 1)pray for Matt and me-that we can keep him balanced in the remainder of the recovery. 2)Pray for no infection in the IV line we are going home with. That is the only complication that could arise with that. 3)Pray that the initial infection continues to get better.4) Pray he is able to come off all blood pressure medicine. They've already reduced it by half. 5) Pray that his heart continues to remodel with the new valve and that his right ventricle will function normally after surgery. His heartbeat sounds amazingly normal. It's never sounded like yours and mine and now it does, so that is very exciting. Before surgery it sounded like a swooshing, now it sounds like a very regular heartbeat!!!!!!!! We are overwhelmed with gratitude to our God for his loving hand of protection and provision every step of the way!!

Psalm 96, "Sing to the Lord a new song; sing to the Lord, all the earth. Sing to the Lord, praise his name, proclaim his salvation day after day. Declare his glory among the nations, his marvelous deeds among all peoples."

 

Victoria did great and we are GOING HOME TOMORROW!!!

I will try not to vent, but all I will say is I can't help but think that if Dr. Morales had not taken his vacation and stayed to take care of us (haha) we would've been out of here a long time ago!  I will try not to dwell. They said they saw a tiny spot on the MRI, but nothing substantial. Dr. Morales just came by and said we are free to go home!! HALLELUJAH!  The Infectious Disease Dr.'s also came by and said we have to go home with the IV antibiotics.  The two disciplines are not quite in agreement, but as Dr. Morales said, "we don't want to err on the bad side with an infection. 

Dr. Morales said Victoria did great. He hasn't slept in 36 hours! I tried to go visit Victoria's Mom-she was probably in ICU with her.

Thank you for walking this journey with us. We could not have made it through the wilderness without you! Please continue to pray for a total recovery for Jake.

Psalm 111:2, "Great are the works of the Lord;they are pondered by all who delight in them."

Dr. Morales is back

I peeked my head out the door of Jake's room to see if they were taking Victoria to surgery, and I found Dr. Morales. I was so excited to see him that I gave him a great big hug. I think he was a little surprised by that, but he was sure a sight for sore eyes. He visited with us a bit. He has not been updated on our case. In fact he has been in surgery all day and was going back into surgery to perform Victoria's heart transplant! It will take 12 hours. He said he will review our case tonight before he goes in and will meet with us tomorrow with a plan after Victoria. We said, get some rest first. He was on his way to get a triple espresso from Starbucks!!!!  Pray for Dr. Morales and Victoria! And then us!!! 

Please Pray for Victoria

We have certainly met a lot of incredible people while we have been here, but one little girl on our floor has caught my attention. I didn't know why she was here. I see her walking the halls with her IV pole and playing alot, so I just thought she was recovering well. I found out today she is here for a heart transplant and they just got a heart today! She will be going into surgery tonight at 8:30 to receive her new heart! If you are reading this blog, would you just shoot up some prayers tonight for Victoria and her family?? She told me in the hall a while ago that she has a defribrilator and they are going to let her keep it in a jar when she gets her new heart, but that they will have to clean it up before she gets to keep it. She is so precious-I think she is probably 8 or 9 years old. Thanks friends! 

Psalm 107:15, "Let them give thanks to the Lord for his unfailing love and his wonderful deeds...."

Help us pray our way out of here!!!

Please help us pray our way out of here today and tomorrow! The MRI is scheduled for tomorrow, so we have 3 big prayer requests. 1) we are just asking God for clear and a very definitive test and results!! 2)that Jake not have to go home with an IV for his antibiotics. The Dr.'s are not very hopeful that he will go home without it, but we can surely ask God for that.3) Pray for Jake to stay on schedule with going back to school. Thank you for your partnership in prayer!

Psalm 116:1-2,5,7

"I love the Lord, for he heard my voice; he heard my cry for mercy. Because he turned his ear to me, I will call on him as long as I live. ....The Lord is gracious and righteous; our God is full of compassion.....Be at rest once more, O my soul, for the Lord has been good to you."

"NO NEWS DAY..."

.....at least that's what the Dr.'s said today! But it was a great news day! We practically had church here! We started out yesterday with my Dad and ended with a Saturday service last night with the Cates and B-Rod and Steve!  So great to see them! I tell ya-it just does the soul good to be surrounded with family and friends in this environment. Then today the room was bursting with friends-Matt's partner and his family came from College Station.  The Parks brought us PeiWei(and Lauren came with her bag of goodies for Jake), Joel Williams, the Fultz came by for the 2nd time, Katie Hooper and Travis (yay, he's back), faithful friends, Melissa and Ben, Paul and Brenda Rizzotto and of course, last but not least the entertainment of the day-B-Rod and Steve. You will never know what a blessing you are to our family. You helped us make it through the day today. It was very hard not being where we always are on this the Lord's Day, but we didn't skip a beat today with the precious fellowship and prayers that we enjoyed with each one of you. Thank you for continuing to walk this rocky path with us. We love you!

The biggest change I saw today in the "no news day" was Jake's energy level. He is getting more and more energy everyday. Praise God!  He will know this hospital backwards and forwards as we have walked the entire building! They lowered his bp medicine again today, so I feel like that is really helping him be less tired. Lately that has been his biggest complaint. He has also gone 3 nights without fever which also help. The next 2 days will be "big news day" because hopefully tomorrow will be the last blood culture for a while and we should get to see Dr. Morales after his LOOONG Christmas vacation. I mean how dare him! I look forward to seeing him and believe me I have a list of questions for him.  Tuesday is the MRI, so I ask that you pray that the fluid around the sternum is completely gone and they see NOTHING abnormal. They will also do another echocardiogram.... So the next 2 days are important and could be very exciting as we maybe see the light at the end of the tunnel to the road HOME!

We do covet your prayers for our family and haven't stopped feeling so covered in this journey. Never did I dream I would be journaling this long, but for those of you who are our faithful readers, thank you for reading-it's been very therapeutic. Even if there are no readers-it's been therapeutic.

Psalm 118:1, "Give thanks to the Lord, for he is good, his love endures forever."

JOY!

Friends are such a joy! I have been reminded of that everyday when someone comes to visit, brings us food, sends us scripture, calls, texts, emails.....I could go on! These are long days in Room 1535, but you make it go by so much faster. Our dear friends, The Parks came today, not once, but twice-lunch and dinner on them. Not to mention the LAUGHS!! Wow! Who does that-all the way from SL? The Parks and Melissa Anderson, another dear friend, that's who! Twice in one day!!!  Tiffany and Ann, we inhaled the chips and queso and the prailines were quality! Not to mention the New Years party gear! Amy, I enjoyed the escape with the magazines, the Sonic drinks and Jake loves the game! Gordon and Gretchen, Jake loved the sparkling cider and cookies! Bill and Bridget, Olive Garden hit the spot! Cheryl, your prayer calmed my soul and I loved having you beside us when we talked to the Dr.'s.  Steve and B-Rod, ya'll are BFF's-well more like fam! THANK YOU! Jake thanks you! He feels so loved! And we love each one of you for that!

He's feeling better today! They are getting all his meds regulated-different antibiotic, less bp medicine! The best news is he has gone 2 days without fever!!! I can just tell he's feeling better.  The hard news is we are going to be here until Wednesday, now! I mean just pray it's not any longer, PLEASE. They want to do an MRI on Tuesday to see if there is still infection around the sternum.  Hopefully after that we will go home on Wed., but with antibiotics for a long period of time. My prayer request is that we can manage those at home, that we can manage home bound school for 2 weeks and then go back to school as planned. This has been quite a complication, so we are praying that he can stay on schedule with school! 

Thank you for all you've done! I know I'm up late-I can't sleep! So as my friend shared with me today from Psalm 118:24-25, I will share with you! "This is the day the Lord has made; I will rejoice and be glad in it. O Lord, save us, O Lord, grant us success.  Blessed is he who comes in the name of the Lord."

Another Day at TCH

Today, (New Year's Day) was very eventful with an echocardiagram, x-ray and lots of visitors!  They were looking for fluid around the heart, but everything came back negative-no fluid!  So that's good! Last night around 11:00 Jake had a headache and they gave him ibuprofen, so we didn't get a true test of whether or not there was fever! Praying again tonight for no fever!  Please just continue also for his heart to "remodel" as it functions with the new cow valve! 

He is getting very discouraged, so all the visitors today meant so much. Especially because he got to look at someone else's face besides Matt, Jenni and me! Actually just Matt and me! haha! Jenni is a bright spot in his day! But, your visits mean so much, especially right now while he's just receiving the IV antibiotics because he can walk around anywhere he wants and hang out in the game room or go to McDonald's. It's definitely a highlight in our day. Doesn't every heart institute have a McDonald's? Thank you for loving him and continuing to keep him in your prayers.

I close tonight relying on the knowledge that our God is sovereign.

All our love and all God's best to you!