Saturday, January 12, 2013

Storms, home, and the flu!

I was just cuddling my sweet boy, no more tubes or cords! He is clothed in monkey pj's and wrapped tightly in his favorite hooded monkey blankie. Discharge papers are done and we can leave whenever we want this morning!! Landon is doing awesome and they want us to get out of here as soon as possible because it has become safer for him to be home then here in the hospital.

We have been told that all of the hospital's in Minneapolis are overrun with cases of the flu. There are even several on the CVICU floor right now that we are on, because the ICU is completely full. Yesterday, after Landon got his oxygen and the last of his monitors off, we were able to pick him up and walk him around the floor. Later in the day we were told that we shouldn't leave our room anymore because of the risk of Landon catching the flu virus. You just have to watch the news for 5 minutes to see how scary this is! We are still in the small PICU room because they figured it wouldn't be smart to move us to the recovery floor since they knew we would be discharged this weekend anyway. A doctor yesterday told us to get Landon out of here ASAP. He said we could leave yesterday, but we wanted to wait one more day since Landon had just gotten off his oxygen.

Landon's sats without oxygen were sticking around 85-95, which we didn't think was good. He had an echo done yesterday and what they found was that there is still a small hole in the ASD (hole) they patched up. The surgeon told us that he left a hole very small and that Landon most likely wouldn't use it, but our little man, for some reason, feels he needs it right now to get adequate flow to the right side of his heart. This is "not" a bad thing. We have been told that it is perfectly fine for Landon to use the hole, but because he is using it, it is going to bring down his sats. So for the next couple months Landon's sats will be lower, until the hole closes and his body slowly adjusts to this change. After the hole closes, his sats should be completely normal. We will meet with Fernandez right away when we get home and have an echo done. Fernandez will want to monitor the size of the hole by performing monthly echo's until he can no longer find it.

Landon's immune system is close to normal now, because he is older and he has had this surgery to make it so he has a normal two ventricle heart, but we still need to be very careful for a while. We were told to error on the side of caution with him. So sadly, there will be no more church or fun outings for our family for the next couple months. We'll probably hang pretty low until Spring comes and this nasty flu is long gone.

They are also concerned for Landon because of the horrible winter storm (Gandolf :) that is supposed to sweep in on us bad today. They obviously do not want Landon driving home, but they agreed that we can leave as long as we wait out the storm at my aunts house. So that's where we're headed this morning. We will stay there over the weekend and leave for home early Monday morning.

Landon... oh my goodness!! Our Landon, he is known as the rockstar of this floor. All of the doctors and nurses that pass his room usually stop in just to get some of his smiles. I was so worried about how this surgery would put his physical development back, but Landon quickly proved to us that he wasn't going to let us hold him back. I didn't know how much pain he would have when he sits up, but he doesn't seem to have any. Yesterday we found ourselves questioning that this child actually had open heart surgery three days prior. He was sitting up, reaching, playing, laughing. You could tell that everyone who looked in his room was just filled with hope. He is such a strong child! They took him off of all of his pain meds yesterday (isn't that unbelievable) and told us that he could have tylenol as he seemed to need it, but the whole day passed and he didn't seem to be in any pain! We did give him a couple doses last night just to settle him so he could sleep well. I just continue to be blown away by my child's strength. I am so blessed to be his mama.

Landon hated the "no no" they put over his IV so that he couldn't pull it out. He hated is so much that somehow last night he actually succeeded in pulling it off and taking the IV out right along with it. I almost passed out when I realized what he had done! I have watched him get his chest and breathing tubes out more then once, but for some reason him pulling out his IV seemed more serious to me. I couldn't look at his hand for the longest time, even though there was only a drop of blood and the nurse said it just saved her from having to do it in the morning. Ryan wont quickly let me forget how I overreacted haha :)

Watching Curious George this morning. Ready to leave whenever papa wakes up

 Please pray for protection from germs for our family. Pray for safe travels for our parents and our friend Krista who are headed back to Warroad, MN and Bismarck today. Pray that the storm passes quickly so that we can get home and get back to our normal life. Please continue to pray for pain relief for Landon and that his strength will continue to improve with each day.

This experience has been so full of ups and downs. I am brought to tears when I think of the fact that Landon will not remember any of this. We know that we have such a responsibility to tell Landon about his special heart and how God has used it to shape our families life and the lives of so many others. We are so glad that Landon will not remember this pain, but we want him to know where His scar came from. We want Him to know how God has had His hand on his life at such a young age and that everyday he lives, runs plays, is a miracle and an immense, unspeakable, gift (Oh, the tears!). Ryan and I believe that Landon's journey was much more for us then for Landon. God has used Landon's heart to open our eyes to pain and beauty and how you truly cannot have one without the other. We have grown more in this past year with Landon then we ever could have dreamed for ourselves, our marriage, and our family. Everyday we see Landon's scar we are filled with gratitude. Most families wish that they could take their child's scar away, but I would never wish that. I love that we have a constant reminder of how God has been faithful to our family.

I do not know where You will take us from here Jesus, but know that we will never forget what You have shown us through Landon's heart. Thank you for healing and restoring it. Thank you for protecting our baby boy through the horror he has had to endure. Thank you for the beauty we have discovered while walking the path called suffering. We never would have chosen this path on our own so thank you for knowing that it was exactly what we needed. Above all, thank you for walking this path before us, showing us that it can be done. Telling us that You will never abandon us along the way.

We will always remeber.

A broken heart will always be rooted in the foundation of our family.

Lord break our hearts for the things that break Yours.

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