Full heart repair

Ryan is still a candidate for a full heart repair but it will obviously be put on hold until she is fully recovered from the stroke. Take care, Jared

Latest on Ryan

She has done really well over the last day and a half. Only one seizure, which is good. Seizures were to be expected after the CVA(stroke). We will continue to monitor her brain over night. Please pray that the swelling continues to go down and that we have no bleeding in her brain. Much love to you all. Jared

Stroke

The seizures were caused by a stroke. How much the stroke affected Ryan is unknown. We will just continue to manage the seizures. We have our weekly care team meeting today and our big question is how the stroke will affect Ryan getting her full heart repair surgery. Please pray for us. Jared

Seizures/CT Scan

Ryan had multiple seizures this evening and is going down for a CT scan to check for possible damage to her brain. She is doing good now. Please pray for her and us. God Bless, Jared

Hope

Hi there,

Michelle here. :) I just wanted to share some thoughts on hope that I read recently that encouraged us both...
"It is essential to distinguish between hoping and wishing. Wishing is something that we want or think we need in the future. Just because we wish for something good or holy we think it qualifies as hope. It does not. Wishing extends our egos into the future: hope desires what God is going to do - and we don't yet know what that is. Wishing grows out of our egos and; hope grows out of our faith. Hope is oreinted toward what God is doing; wishing is oreinted toward what we are doing. Wishing has to do with what I want in things or people or God; hope has to do with what God wants in me and the world of things and people beyond me. Wishing is our will projected into the future, and hope is God's will coming out of the future. Hope means being surprised, because we don't know what is best for us or how our lives will be completed. To cultivate hope is to suppress wishing - to refuse to fantisize about what we want, but live in anticpation of what God is going to do next. Hope affects the christian life by making us expectant and alive. People who hope never know what is coming next. They expect it is going to be good, becasuse God is good. Even when disasters occur, people of hope look for gow God will use evil for good. A person with hope is alive to God. Hope is powerful. It keeps us on tiptoe, looking for the unexpected. "

Back from Cath

Ryan just returned from the OR and she did well. They were able to balloon open her pulmonary arteries which we hope will give her better blood flow to her lungs. Right now we have to wait 3 to 4 days to see how she responds. At that point we will decide whether or not she needs her full heart repair now or later. I will continue to update with new info as I receive it. Thanks, Jared

Cath tomorrow morn

Cardiac cath has been moved to tomorrow morning at 7:30am. Thanks in advance for your prayers. Jared

Update

The cardiac cath has been moved to Thursday. As I mentioned before, this will reveal accurate pressures in and around Ryan's heart. We also learned that her BT shunt is completely occluded but Ryan's oxygen Sat's remain high. This means that she is getting good pulmonary blood flow without the shunt. This is great news. Hopefully the cath will reveal good enough pressures and she will not need a stint. Thanks for all the prayers. Jared

Cardiac Cath

Michelle and I had our weekly care team meeting today. The current plan is to get Ryan to the OR on Tuesday for a cardiac catheterization. This will give us a good look at the pressures in her heart. Also, due to the blockage of her BT shunt they will be placing a stint in her shunt and also one in her pulmonary valve. This will assure us that she is getting the appropriate blood flow to her lungs. Once she has a few days to recover we will continue with our last attempt at extubating her. If she is unsuccessful then we will move forward with the tracheostomy. We are looking at another month or two in the hospital but at least there is discussion about going home. Thanks for all the prayers, Jared

Last shot at extubation

We are at the point where this will be our last go at attempting to get Ryan extubated. Honestly, it will be difficult. She has been intubated for so long that our team of doctors are not giving her a chance to be weened and they think that a tracheostomy is imminent. We are prepared for a trach but we believe she can be weened. Michelle went to battle with the Chief Doc just to get one more chance to try to extubate. So I'm asking you guys to pray big that she will be successful! Nothing is impossible with God and we have witnessed the power of prayer over and over again. We will continue to be hopeful in Him. Thanks in advance for all the prayers. Jared

Chest tube removed

Ryan had her chest tube removed yesterday. This tube had been in her chest for a month. We thank God for this answered prayer. Jared

Thanks again

Just want to say thanks to everyone who was involved with the bunko night. I'm telling you that it was pretty exciting to see the amount of cash that was raised for Michelle, Ryan, and I. It was right around $1200 and I just got a bill in the mail 3 days ago for $1140! Pretty amazing how God works. I'm so grateful to all of you for your prayers and support. We are so humbled by it all. On another note, Ryan continues to do well. They have taken the possible fungal infection off the table. And the tube in her chest is draining less and less everyday. It should be out in a few days. She has been able to continue weening off of the vent and she has been taking her pacifier. The albuterol treatments are now only every 4 hours. She did however have an echocardiogram that revealed that her shunt may be partially occluded. This would mean that she may have to have her full heart repair earlier than expected. This would be doable but not ideal. We really need to get her off the vent so we can get her home. Please pray specifically that the shunt is not blocked. If the shunt is blocked, it could also mean that we would have to consider a tracheostomy. The reason this is being considered is that since she has already been intubated for so long, she is missing out on normal developmental milestones. Thanks again to you all. We are so blessed. Jared

Good Day

I'm excited to say that Ryan has done very well over the last 24 hours. Last night was uneventful and that's a good thing. She continues to get the albuterol treatments but the dosage needed continues to decrease. Also, the fluid draining from her chest tube has finally started to decrease. Fungal cultures are still negative and tomorrow we are having a family care meeting to discuss where we go from here. It has also been on our hearts to have a pastor from our church come up and pray for Ryan, so we did that today. It was definitely impactful! He was so encouraging to us. His daughter has leukemia so he can really relate to our situation. When he layed hands and prayed for Ryan we could feel the power of God working through him. And she looks better now than she has in days. Simply put, God hears our prayers. We continue to be amazed by the love he continues to show us. Jared

Hanging in there

Ryan made it through the night but it was not easy on her. She had multiple episodes where she struggled with her breathing. This was due to the asthma. She is doing ok today although she does have moments where she struggles. She is currently on albuterol to help open her lungs up. We will just have to keep watching her closely. Thanks for the prayers, Jared

Tough night ahead

Michelle and I just had another difficult discussion with our primary doctor. Ryan doesn't look good. She has developed a wheeze and they suspect asthma. This is alot to add on top of everything else she is dealing with. They have asked for both of us to stay at the hospital tonight. This is because we may need to make some tough decisions. Please pray for what we have asked for all along....Healing. God knows our hearts, that as Ryan's parents we obviously want to keep her with us. But if it is his will to take her then please pray for strength for Michelle and I. I will keep you posted on how the night goes. Grace and peace to you all, Jared

What you can pray for

Just wanted to let everyone know where we are at this point. Here is a short list of our current goals: figure out the possible infection, figure out why she continues to have drainage from her chest tube, and attempt to get her extubated. Thanks again for all the support. Michelle and I are overwhelmed by you all. Jared

Update and thank you

We continue to wait for results that would confirm a fungal infection but as of right now everything is negative. Ryan had a little fever yesterday morning but it went away pretty quickly. That was the first fever in 5 days. She looks really good and we have been able to lower her vent settings which she is tolerating well. We will continue to take it day by day. I also just wanna take this time to thank all of you for the cards and gifts. Michelle and I continue to be blown away by all of your love and support! Thank you. Jared

MRI today

Ryan had an MRI today to check and see if the infection had affected her VP shunt and more importantly her brain. I just spoke to Michelle and the scan revealed nothing new. Everything looked normal. The tests being run for the fungal infection(in her lower airway)take time because fungus grows slowly. As of right now nothing has grown so it's still inconclusive as to whether or not Ryan has a fungal infection. But the reality is that the doctors think it's a matter of time until the sample grows and proves that its a fungus. We can only plead to God that it's not but if it is that He will take it away. But if he doesn't we will still praise and honor Him. Thanks for all the prayers and support. Jared

Fungal Infection

The scope revealed that Ryan has a fungal infection. This is pretty serious. A fungal infection is very hard to treat and the medication that must be used will be hard on Ryan. This extends her stay in the hospital at least another 4 to 6 weeks. They are also concerned about her immune system as well. The fact that she has the fungal infection brings up that concern. Please pray for us. Jared

Rollercoaster Ride Continues

When I left yesterday to head home, Ryan was doing great. Unfortunately as you all know, her health can change on a dime. Well, last night it did. Her fever is back and she keeps having episodes where she desats into the 20's. What that means is that in those moments she is not getting enough oxygenated blood throughout her body and extremities. I just got to the hospital earlier to meet Michelle at Imaging. That is where they took Ryan to get a CT scan. The scan was of her lungs and airway. She is now in OR getting her airway scoped to check for any possible problems. I will follow up with more info as I receive it. Jared