A Christmas Miracle

Well where do I even begin?! Yesterday I decided to send a text to a few ladies I consider "mentors" to me. I asked them to please join me in prayer and confession that we would get THE phone call today with THE plan for Gavin. I started to get concerned since the last I heard from a doctor was Friday. We had made some medicine changes and were told a plan was in the works and we would know soon. I guess my biggest fear is that the doctors didn't have confidence in how to proceed with Gavins current heart situation. 

I text these ladies and prayed all day I would get a phone call. Well 6pm rolls around and I had lost hope. About 6:30 I hear my phone ding. I go to look at it and it's our surgeon!!! Thank you God for answering our prayers!! He informed me that a definitive plan was set in place and our cardiologist would call tomorrow. He reassured us and checked on Gavin. So I felt a huge sense of relief after knowing I would definitely get a phone call and a PLAN tomorrow!! 

Adam calls me a little later, once he landed in Denver. When we were on the phone he said "hold on, an unknown number is beeping in, want to make sure it's not my flight getting delayed." So he clicks over and takes a while to click back to me. Once he does he says "hey I have Dr. O on the other end and he wants to conference with us." We had a 40 minute discussion on 3 different ways to approach Gavins heart situation. Here they are, I will try my best to explain in non-crazy medical talk. 😉 

1. Heart cath with the intention of going through the groin and gaining access to the fistula by burning or using a needle to pass through. This will be the most risky and time consuming part. Once that is done successfully they'll be able to get to the area needed to close off blood flow to the small part of his left ventricle that is there. If for any reason this process takes longer than they want they will move to step 2. 

2. Hybrid procedure: part heart cath part open heart surgery. The surgeon will come into the cath lab. They will roll Gavin to his side and gain access through an incision made in his chest. This would not require heart/lung bypass machine. Obviously this would be a longer recovery for Gavin. 

3. Open heart surgery with the heart/lung bypass machine. This is the least favorable option. Both the OKC and Gavins surgeon who is in KC now want to avoid this option if at all possible. If it came to this and Gavin was stable, we would transfer to KC to have this done by Gavins surgeon.

The reason this took so long to get a definitive plan is because our amazing team of doctors were being extremely thorough. Talking to top doctors across the country and getting their opinions. Basically were on an even playing field whether we go to OKC or KC. No one including the doctors they spoke with have experience with Gavins current situation. It is so rare that most surgeons won't see this in their career. There was one other case at a CA hospital that was similar but not identical to Gavins. That child's procedure was successful and they're currently doing well! We're believing and confessing this for Gavin!

After MUCH consideration, prayer, multiple conference calls with doctors, talking with our family and most importantly Gavin, we have made a decision. We will do this in OKC next week (looking at Tuesday-tentatively). Adam made Gavin a kid friendly graph. Drawing out what was going to take place. He put OKC on one side and KC on the other. Gavin of course uses his baseball analogy and says "ok so basically this is Dodgers vs. Royals." 😊 I just love this kid and his way of thinking. His courage and bravery is so uplifting to me! He went with the Dodgers because he wanted to "wake up in a hospital he was familiar with and be with all his favorite nurses and Dr. O (whose done 99.9% of his heart caths). Now that Gavin is 9 we want him to be a part of the decision making. Especially knowing we're on an even playing field with both hospitals. We really can't go wrong either way. We want Gavin to feel comfortable and reassured with where we're at. 

I thank you all for the continued prayers for our family. Last night was a tearful, hard discussion with our incredible family. Can we just talk about how we have the best parents ever? We value their opinions so much. They've held us through this journey. We also have some pretty incredible sisters and brothers-in-law. Always willing to lend a hand (even from afar!) 

We can't wait for our Christmas miracle next week. And to come home and have the "BIGGEST, BESTEST party with his cousins, ever!" (According to Gavin). We're looking forward to that party too son! 

Pics from last week: 

"Party in a box" from our sweet church family. Gavin helps with the Rhodes Christmas party at our church each year. He was so sad to miss this year. So one of our sweet sisters brought the party to him! 

Our precious youth group bringing joy with Christmas carols, food and treats!

Gavin skyping his class and presenting his "book report in a bag" to them. 

We also received multiple acts of kindness last week. Grocery shopping by our awesome neighbor Shannon. Granny B staying with me while Adam was on his work trip. She also went out of her way to help however I needed! Our sweet friend Dawn, went on a search for Gavin some house shoes for the hospital. Our sweet friends and family who are willing and ready to lend their homes to anyone coming to OKC next week. Our incredible school LCS, literally the best staff and families on planet earth. I can't even tell you how amazing they've been to us! I am so sorry if I've left anyone out and I plan to personally thank each of you in someway. We're so blessed, so loved. 

Trusting in His word, feeling peace in His presence.... “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”

John 16:33 NIV

Gavin the Courageous

Gavin hasn't been in school since the Thursday before his heart cath and Thanksgiving break. We've been doing home bound school and the first week was a success! We went up to school to take his tests during his teachers plan period. Gavin wore a mask and was not around any students. His sweet classmates wrote on the board adjectives to describe Gavin. My favorite was courageous. That he is!

Gavins ENTIRE third grade class wrote him letters of encouragement filled with bible verses and pictures.

Gavin also got to skype with his class last week. He really enjoyed seeing his friends and his sweet precious teacher Mrs. G. We're going to make this a weekly thing until Gavin gets back to school. 

One night last week Gavins school counselor, Miss. O and his 2nd grade teacher, Miss. T. came over to play games with Gavin. This made Gavin giggle and smile! 

We have been blessed my so many acts of kindness and generosity this past week... Church on the Move (the home

Church of the boys school) sent Gavin a huge basket of goodies! One of the staff has called us weekly to pray and give us words of encouragement. The parents of Gavins classmates have been absolutely incredible. We're so blessed to be a part of the LCS/COTM family!!! 

We've had multiple families offer us meals, Christmas shopping, etc. A very special family brought Gavin and Brody some early Christmas presents, lots of KD stuff that just made their day!! Thank you Hampton family!! One of my fellow heart mamas sent me this, it just brought me to tears!

The blessings continue... My grandmother graciously sat with Gavin yesterday so we could knock our Christmas shopping out! My parents kept Gavin over night one night so we could catch up on some sleep. Gavin has been very figity at night. He can't sleep and often has chest pains. My poor dad slept with him and realized how bad it's been for us at home. We can't thank them enough for giving us some sleep!!! Gavin is having good and bad days. This afternoon has been especially rough. He's cried most of it and he is currently sleeping on me as I type. 

We've been in communication with our surgeon and OKC. Here is the latest... The films from cath lab, echoes etc. are still being looked at and trying to confirm the best approach and place to do this. In the meantime we're adjusting more medicines to keep Gavin comfortable. We will definitely have more of a plan by the end of this week. 

A couple of sweet third grade mamas have been sending me bible verses about peace, healing, etc. This one has been one of Gavins favorites... Psalm 27:14 Wait on the Lord, be of good courage, and He shall strengthen your heart; wait, I say, on the Lord!

 

Tough pill to swallow

My heart and head have been heavy this week, need to clear my thoughts... I have a love/hate relationship with this blog. Mostly love though, it documents everything Gavin has been through, what an incredible story to share in detail with him one day. It's also a great tool for keeping all of our family and friends updated without having to make sure I've told everyone. One of my favorite things about it is the connection I've made with other heart moms (and dads)! I am not kidding, the second after my sister posted last week I had SEVERAL heart moms message me about some great facilities that specialize in this situation. It also brought attention to Gavins FABULOUS surgeon who took the time to text me Wednesday night to say he's ready to see film and do whatever he can to fix Gavin up. Which was such a God thing because I was in mama bear mode, up all night praying, and researching! 

Wednesday did not go how I planned. My plan was we would go in and get immediate results with a super easy fix, go home and enjoy Thanksgiving with our family. Instead, it started out with Gavin getting an IV that heavily bled out due to a loose tube. This resulted in lots of crying, multiple people coming in to fix the issue and lastly having a child life specialist come in to calm his fears. Back up a little bit... Gavin is usually very calm, easy going when it comes to medical care, especially an IV. We are talking about a child who has experienced multiple IV's (including in his head), shots (including ones he's given himself IN HIS STOMACH). I say all of this because he is ONE TOUGH KIDDO! I think all of his anxiety is partly he doesn't feel good and partly we have taken him off his anxiety medication. He's had medicine changes recently, one being Prozac. Gavin has been on Prozac since his pacemaker surgery 2012, in which we think caused PTSD. A long with that he is a heart patient, which we know comes with many emotions. He has been through SO much in his 9 years, he definitely needs some medicine to take off the edge. More on that in a minute. 

Back to Wednesday... After he settled down our cardiologist came in to go over the tests Gavin was about to have. We discussed that Gavin no longer had the dizzy spells after taking him off one of his new medications and lowering his blood pressure medicine. We informed him though that he was still very tired, out of breath a lot, and complaining of chest pain. He even experienced chest pain and vomiting the week before. He had been missing a lot of school, and we had made extra appointments in OKC to try to figure all of this out. One Sunday he slept through worship and complained of chest pains that afternoon. It was so bad we took him to the ER to get checked out. Every appt, every ER visit, his vitals always checked out fine. The only appt that gave us any answers was his stress test (which he did so poorly on) and his echo which showed his heart squeeze was also poor. Hence the reason for scheduling a tilt test and heart cath. Once it was determined that Gavins dizziness was pretty much non existence our cardio decided to cancel the tilt test that morning and go straight to the Cath lab. We were impressed with his intuition after the cath was over... 

Gavin was in the cath lab about 4 hours. I received two phone calls from the nurses, by the 2nd one I started getting concerned. I asked her if everything was ok. She said yes and that Dr. O would hopefully be out soon. Shortly after that, another cardio walks by and into the set of doors where the lab is. I leaned over to Adam and said "why is he going back there?" Adam brushed it off and said, "oh I am sure there is another patient back there." Later, that second cardio, Dr. W came back out and comes over to us. He told us Dr. O was still working on Gavin. He informed us of what they had found and needed consent for another dr to come in and use a camera to go down Gavins throat. During that process they would inject Gavin with a medication that would increase his heart rate to simulate exercise. They wanted to do all of this to confirm what they had found and see if it coorelated with Gavins symptoms. About an hour later they were finished and Dr. O came out to talk with us. We were told it was a rare situation and not seen much. So they were all puzzled and scratching their heads on what to do. Would it be best to do a heart cath or go into open heart surgery? What we know is it's a coronary fistula. We know that with physical activity, it can come some serious complications. But we're keeping it on the positive spectrum and claiming none of the complications will happen. We will also be smart about it and keep activity to a minimum. 

Earlier I was talking about the Prozac, we also plan to restart that (once we discuss with doctors) to help Gavin. He's had a rough weekend, just riding an emotional roller coaster with him. Yesterday was especially rough and he's having a hard time falling asleep at bed time. We're hoping to know more on Monday once all the doctors are back in office from the holiday. The plan is to get films out to the OKC surgeon, Gavins surgeon and other facilities to see where we go from here. We should know much more next week. Thank you all for your out pouring of love and prayers. We are so, so blessed. Now let's just talk about how handsome this boy is?! 

My prayer for you sweet boy...  “In peace Gavin will lie down and sleep, for you alone, Lord, make Gavin dwell in safety.”

Psalm 4:8 NIV 

Gavin's Cath Update

This is Kristen. Dr. Overholt just came out and gave us an update on Gavin. Gavin has coronary fistulas where his underdeveloped ventricle is pulling blood. They injected Gavin with isopryl  that made his heart race like he was mimicking exercise. In short...during exercise Gavin has blood flowing into his under developed left ventricle, technically where no blood is needed. This is complicated for the docs, they haven't seen hardly any one specific case they can remember like this, so they are going to reach out to other cardiologist and surgeons to come up with a game plan. This isn't a routine fix, so they need to seek out more guidance. If the fix can't be done through a heart cath, then we would plan for another open heart surgery, but not like any of his previous surgeries. This one would not be as complex. In the meantime, no exercise for Gavin. Please continue to keep Gavin, Faith, Adam, and the doctors in your prayers.

Calling on Gavins Prayer Warriors

Well it's been a couple of months but I think it's a good time to give everyone an update on Gavin! 

In my last post I talked about Gavin passing out at school. Well, since then he's gone back and fourth with the dizzy spells. In the recent weeks/month it's become much worse. To the point of having to pick Gavin up from school. At first we didn't know if it was in his head, that he was still scared from his passing out episode. But then he seemed to complain more and it became heightened during excerise. Gavin had his regular cardio appointment two weeks ago. His echo showed heart function was good but his heart squeeze wasn't great. After further discussions, Gavin had more test ran... EEG (to rule out neuro issues), and lab work. Those came back normal so we moved on to the next test. Gavin had a treadmill/stress test done. Gavin lasted maybe 3 minutes before he became light headed. He was on a major incline but hadn't made it to the running part yet. They stopped the test and spoke with the cardiologist. Gavins Doctor came up to talk with us. During the test, Gavins blood pressure and oxygen levels dropped abnormally low. His oxygen levels got to a 70, we haven't seen that number since his pre-surgery days. His heart rate didn't even get up to a high rate like it should during excerise. It was decided to run more labs to rule out some other scenarios. One example would be a viral infection that has caused antibodies to not allow a good heart squeeze. Gavin has tested positive for Epstein-Barr Virus in the past. If this were the case, we would look into Gavin getting infusions. The next step is to do a tilt test and heart cath. The plan is to do them the same day (looking at sometime around Thanksgiving). Gavin needs at least 7 days prior to the heart cath to be off of Coumadin and on lovenox (yuck) injections. While our hearts are broken, we're still encouraged. Encouraged to be with an incredible team of doctors that carefully and dillegently make decisions for our son. Encouraged that we have a wonderful group of friends and family that go to our Lord on our behalf. And mostly encouraged that we serve a God that is bigger than all of this, that He will walk us through this, as He always does. 

As always, smiling and being goofy. Love this kid! 

2015

Obviously I have been horrible about keeping up with this blog!! Over half way through 2015 and I would say Gavins health has been pretty good. He had a scare earlier in the spring. He passed out at school and required an ambulance ride to childrens. After being checked out, all was well. He was diagnosed with vasovagal syncope. The doctors believed he had a drop in blood pressure that caused him to pass out. 

The 2014-2015 school year also brought changes! Gavin started 2nd grade at Lincoln Christian school. LCS has been a HUGE blessing in so many ways. We're thankful to God that we have the opportunity to put both of our boys in a loving, Christian environment. The smaller classroom sizes, prayer time, etc have helped Gavin tremendously with his anxiety! 

(2015-2016 Brody, kindergarten Gavin, 3rd grade)

So here's to the rest of 2015 and getting better at updating this blog!! 

New Year!

Between the boys birthdays & the holidays I am behind on blogging! 

Gavin is doing well in school. He absolutely loves his teacher & the fact that he has his 3 BFFs in his class! 

We carried on the Gavin/Brandon birthday tradition this year. We got to spend Gavin's 7th birthday in Cleveland with the Weedens. It was a fun trip and we made some great memories! Thanks Weedens!  By the way, stay tuned... Some exciting stuff coming up regarding the foundation! 

Medically speaking Gavin is doing as well as he can be. He got a bad stomach bug at the beginning of the school year that put him in the hospital. Not fun! So here's a little PSA: keep your kiddos home when they're sick, it can be life or death for others. End rant. :)

We got to stop the lovenox injections and then insurance decided to no longer pay for his home health nurse visits, so we spent a lot of time going to get labs.  Every time I step foot in the basement lab at SF it reminds me of a not so wonderful time. Right after Gavin's second open heart surgery (3 months old), he became addicted to the narcotics. The doctors started him on methadone. Basically, methadone is legal heroin. Apparently you can only get a script filled at a hospital lab. Which made for a pleasant trip with a screaming baby whose pupils were dilated and hair was falling out. I don't miss those days. So let's just say I was less than thrilled that our insurance refused payment for home health. Not only was the lab a reminder of horrible times but also a place filled with germs waiting to attack my immune compromised son.

We FINALLY received our home INR kit to test Gavin's levels ourselves. It's great that we can do a simple finger prick (which doesn't require as much blood) & do it from the comfort of our home! It's even better that I can call the nurse myself and we discuss therapy changes over the phone. It works out nicely! 

Gavin has a pacemaker check next week, prayers specifically that all is well. Our last pacer check showed some sort of "noise". Cardio is hoping it's just "noise" and not anything alarming. We will know more next week.

Gavin had neuro and opthamalgoist follow ups- everything checking out good in those departments! We need to get Gavin eating more! He has gone down on the scale percentile. Somedays are better than others on getting him to eat. But even on the good eating days it's not enough. Because he is only working with half of a heart he is burning triple the amount of calories a normal heart healthy child his age. To top it off he's hypoglycemic which makes things more difficult. Waiting to hear back from doctor on where we go from here with that situation. 

I know from the outside just looking at Gavin he seems so perfectly fine. But I just want to be honest for a minute. It's been a struggle. And before I go any farther, I know there are children in worse shape than Gavin, I know there are the littlest angels in heaven right now. I know there are parents that are having to make some really difficult decisions for their sick child. I know this and I try through every struggle to remember them and to find joy and peace. But sometimes it's hard, really hard. Sometimes I just cry myself to sleep. Sometimes I can't sleep. Sometimes I yell at God and ask him why? The daily medications (3 times a day), the blood draws, the finger pricks, the pacer interrogations, the input & output, the anxiety attacks, consoling him when someone has made fun of his "gross" chest or how small he is, playing football (which is so minute to me but something major to a little boy), the amount of doctor appointments, the "what ifs", future surgeries or procedures, etc, etc. Its hard. It's hard. It's hard. 

Today as I had a day of struggle, I opened my devotion and found this... But the Advocate, the Holy Spirit, whom the Father will send in my name, will teach you all things and will remind you of everything I have said to you. Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid. (John 14:26, 27 NIV) These are the words of Jesus speaking to His disciples before His death. Jesus promises to send them the Holy Spirit, who will fill them with strength and comfort. God has given us a spirit of peace and not fear, so when we are troubled or sad we know that we can count on God to comfort us. When you are sad or afraid, do you feel the presence of God? He is there for you!

Thank you Lord for giving me peace & strength when I feel so weak!!