Latest on Ryan

Hey everyone. I stayed here at the hospital last night as Michelle went home to sleep for the first time in over 3 weeks. It was really hard for her to leave yesterday. She just can hardly bare being away from Ryan and the dedication she has shown to her is awe inspiring. Ryan is making progress albeit slowly. That's ok though, she can take all the time she needs. Her vent settings continue to get lowered as they hope to extubate by Friday. She does however still have a fever, a fever that she had all last night. Please continue to pray for her healing. I know God has something great right around the corner if we all just trust in His plan and wait patiently for His answer. As I was reading and praying yesterday I was reminded of the fact that God has never let me down. He doesn't necessarily respond when I want him to but God has always been faithful to come through for me. And most of the time it's not exactly what I prayed for but it always seems to work out for the best. I will be honest, alot of times in life I have thought that I knew best for a certain situation and I'm upset when God doesn't answer my prayer. But I tell you everytime I think he has ignored my prayers, he shows up with a plan that I never saw coming. And surprisingly enough it's better than anything I could have thought up. You see God has a plan and He knows what's best for us. So the best thing we can do is make our desires known to Him and trust that though it may not be in our time or even the way we planned it, God will always prove to be faithful. Jared

Working towards extubation

We have been able to start the process of weening Ryan off of the ventilator. She was making great progress until this morning when she started to struggle with her breathing and the respiratory therapist was forced to increase her rate. The last update that I got from
Michelle was that they think she may be developing pneumonia. She has had a fever the last 3 days that comes and goes. Please pray for us as we face the most difficult time of our lives. It doesnt seem to be getting any better. I will continue to trust in the Lord though lately it has been a challenge. Jared

Post surgery

Ryan is back from her surgery and doing very well. Thanks for all the prayers. Jared

Procedure for additional chest tube

Ryan will undergo another procedure tomorrow morning at 8:30am. The plan is to place an additional tube in her chest to drain the fluid that is settling beneath her pectoral muscles. We just ask for more pray. We hope that this will remedy the problem and we can take the next step in getting her home. Jared

Reflections

Hi there,

Michelle here. :) I read this today and thought I would post it because it really met us where we are at...
"Fear is the wrong use of imagination. It is anticipating the worst, think about what will happen when God shows himself. Dream of the rescue, of what He could do when His hand becomes visible. This is not to set us up for disappointment but to grow our faith by rehearsing miracles in our minds like a child imagining "what if." What if the God who has led us this far really has a plan, and what if that plan is good? Our faith is often weak and forgetful. God does so much for us, and we still nervously wonder if He will continue to help. When oppostion comes, you are ripe for a miracle if you choose to follow God's leading. God is weaving a story of His power in your life. He won't fail you. The Lord is batting a thousand in the category of faithfulness. God's unexpected paths far exceed our shortsighted expectations. When you are trapped at the water's edge, keep walking, because God opens unexpected paths. I have found that there are three stages to every great work of God: first, it is impossible, then it is difficult, then it is done. A path of clearing and guidance will come from an unexpected but miraculous place." -Finding God's Will

Improvement

Ryan is having a really good day. Her vital signs have remained stable for the last 24 hours and she looks extremely comfortable. One concern we do have is that her chest tube continues to drain. This just means that whatever is leaking around her lung continues to leak. Please pray that it stops leaking and there is no need for further interventions. We should be able to start lowering her vent settings soon. Thanks, Jared

Tube placement

The fluid around Ryan's left lung was significant enough to require a chest tube to drain it. They are planning on draining the superficial fluid on her chest later today at bedside. We will then just wait and see how her body responds to those two procedures, with the hope that no new fluid will accumulate. Thanks, Jared

CT Scan

Ryan's ultra sound revealed very little fluid in her lungs. This is obviously a good thing. The problem is that she continues to build up fluid in the tissue around her chest incision. They removed most of the fluid with a syringe but it has reaccumulated. Since they don't fully understand why they have decided to do a CT scan on Ryan at 7:30pm tonight. This will require a peripheral line which has always been close to impossible to get on her. Please pray that God will guide the hands of the IV team and that this scan will provide us with answers. Thanks and God bless, Jared

Chest ultrasound

Ryan is scheduled for a chest ultrasound at some point today. Her last x ray revealed that she may have some excess fluid around her lungs. We will post more info as we get it. Thanks for all the prayers and support. The generosity that you have all shown continues to blow us away! Jared

Fasting for Ryan

Join Michelle and I as we fast for Ryan. This will be a 24 hour fast starting tomorrow morning at 7am and ending on Saturday morning at 7am. A spiritual fast involves abstaining from food while focusing on prayer. Fasting demonstrates a profound need for God's help and guidance through complete dependence on Him. The goal is that in your moments of weakness, you turn to God for strength and pray for little Ryan. Michelle came up with this idea this morning while spending time with God. Here is what she read:

Finally, be strong in the Lord and in the strength of his might. Put on the whole armor of God, that you may be able to stand against the schemes of the devil. For we do not wrestle against flesh and blood, but against the rulers, against the authorities, against the cosmic powers over this present darkness, against the spiritual forces of evil in the heavenly places. (Ephesians 6:10-12 ESV)

What Michelle and I are thinking is that we want to put on the FULL armor of God. And one area that we have not put into practice is fasting. So we want to dedicate one day to fasting for Ryan and her complete healing as a way to fully depend on God for all our needs.

Continued progress

Ryan is having a good day so far. Our biggest concern is that she still has some fluid in her lungs. They continue to keep her on the necessary diuretics to aid in the removal of the excess fluid. If you wanna pray specifically then definitely pray for her lungs. Thanks so much, Jared

Fever

Ryan had a bit of a fever last night so she is now on an additional antibiotic. We are still waiting for her to get rid of a little more swelling before we can work on weening the vent. Take care, Jared

Fluid release

Ryan still needs to get rid of some excess fluid around her head and neck before we can attempt to ween her off of the vent. This is priority number one. Michelle and I are doing good right now but we are slowly becoming exhausted. It's tough to not become drained at this point. Please pray for Ryan's swelling and pray for strength and perseverance for Michelle and I. Thanks, Jared

New Video

I just posted a new video on YouTube of Ryan and Michelle. search key word cliffy2120.

Next Step

Ryan continues to recover and is doing well. We have been able to ween her down on her vent settings and during rounds today there was talk of attempting extubation as early as tomorrow. Ryan also has a lot of swelling around her head and neck. Some swelling was expected but they are planning an ultrasound for this afternoon to eliminate the possibility of any blockage. Please continue to pray for us all. Thanks, Jared

Ryan is recovering

Ryan had yet another big day today. She had the line to her VP shunt(in her head) replaced today due to the fact that the previous line may have been contaminated due to Tuesday's emergent surgery. She also had her BT shunt(heart) cleaned out and her chest closed up. Since this was the second time that her chest had been open, a plastic surgeon was called in to assist due to the fact that there was a need to stretch muscle over the sternum for extra cushioning and to clean up the frayed skin before stitching it back together. I tell you these details because this is our reality or should I say...this is Ryan's reality. Ryan has gone through multiple extensive surgeries on a regular basis since she got here just six short weeks ago(today was her 7th). And this little girl has showed me a thing or two about what it means to have strength. How she continues to go down such a difficult path and still have such a willingness to fight blows me away. So as long as she shows us that she wants to fight we will continue to fight right along side her. We truly could not be more proud to be her parents. On another note, Ryan is currently resting easy back in her room with us. She's doing really well and our hope is for a peaceful and restful night. Thanks again for all the prayers. Ryan is a living example that God answers them. Jared

Chest closure tomorrow

Ryan had a very restful night as she continues to fight. The current plan is to close up her chest tomorrow morning at 7:30am. From there it's back to square one where we will slowly begin to ween her off of the vent. Thanks, Jared

Shunt open

Ryan had a rough night. They had to do an emergency surgery last night to make an effort to fix her shunt. As soon as they opened up her chest they noticed that Ryan's shunt was open. They don't know if it was the blood thinners or just the opening of the chest that loosened the clot. We just know that she is now getting the blood flow that she needs. The next step will be closing up her chest. She is due for that on Thursday. Thanks to you all for supporting us as we fight for the life of our little girl.

Surgery tomorrow morning/Pray for endurance

Michelle and I had a very frank conversation with our doctor earlier tonight regarding Ryan's current condition. As of right now Ryan's shunt is not open. The echocardiogram confirmed it earlier today. This means that Ryan is not getting adequate blood flow to her heart. At this time we don't know if the shunt is clotted or if it is faulty. They have put Ryan on blood thinners just in case it's a clot. Simply put guys, Ryan could take a nose dive at anytime. Our doctor was very upfront with us about this fact. She is hopeful for Ryan but she also wanted us to know that she is not confident that she will make it through the night. The plan is to have surgery tomorrow to fix/replace the shunt(if necessary) and to close her sternum which at the moment is still open. If it is a clot that is closing off her shunt then we obviously pray that the blood thinners clear it out. If not then we just pray that God gets her through the night to her surgery tomorrow. Thanks, Jared

Ryan's rough morning

Ok Ryan now has a good pulse and blood pressure. She is such a FIGHTER! For those of you who don't know, she suddenly coded this morning. We thought for sure we were going to lose her. Apparently one of her lines that is used for giving her fluids had slipped out and was leaking into and around her lungs. As soon as they opened her chest and removed the fluid she began to stabilize. She is however not out of the woods. Please continue to pray for her recovery. More updates to follow.

CPAP to nasal cannula

Ryan successfully transitioned from CPAP to a nasal cannula. This is yet another positive step in the right direction. Her potassium levels have also dropped and the doctors are less concerned about them. She looks so pleasant right now and Michelle and I couldn't be more excited! Thanks to God for all of your prayers and support. We are so blessed! Jared

Update

Ryan is still currently on CPAP. They have weened the settings and we hope to have her on high pressure nasal cannula in a few days. Also, we found out yesterday that her potassium levels are elevated. They are still trying to figure out exactly what's causing this. High levels of potassium can cause serious heart arrhythmias so please pray that her levels will continue to come down. Also pray that we can get her off of CPAP asap. Thanks, Jared

Extubation take II

Ryan was extubated earlier today. She is now on a cpap machine to assist with her breathing. She seems to be doing well at the moment. Please pray that she will continue to tolerate the cpap and that it will only be a stepping stone to get her breathing on her own. I know I say this all the time but thanks for the continual prayer and support. Jared