Weak

But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.

2 Corinthians 12:9

Today has been another down day. Mason has continued to have seizures but these kinds show no signs and are only measured on the EEG. His phenylbarb levels are so high it was time to add another medicine (kepra). We hope and pray that this is effective and it is hard to understand why all of a sudden he is really struggling with his seizures again. Josh and I are very weak. I am scared. We still trust in God and know that He is in control of the situation and believe that He will get Him through this. God is still the only reason Mason is here and that Mason has made it through what he has. Our son is a fighter but he is also God's child and we believe God has him tight in his healing hands. Please continue to pray for all of our family tonight. This has been a long road and we are weary. We are so ready for our boys to be together and for Mason to be home. But we continue to patiently await His perfect timing. He has a plan for all of our lives and we trust Him in everything. He has all of our family in His hands tonight and every night and soon we will all be together. 

Continued prayers needed

So far Mason has had a good day. He had a lot of seizures that did get under control once he got his phenylbarb. They were also having to give him Ativan every 2 hours to keep them under control. Today they were able to wean off the Ativan because his phenylbarb level came back as 79.1. Between the 2 drugs Mason is very sedate. We also talked to one of the neurosurgeons and he looked at Mason's last cranial ultrasound and it does look like he has multiple pockets of hydrocephalus which will make the shunt surgery more difficult. Please pray that this will resolve and not be such a hard fix. Mason is still on the EEG until he is seizure free for 24 hours. We hope and pray this medicine will do the trick since his level is up again. We greatly appreciate your prayers so our sweet boy can come home soon!

Hard day

Mason has had a hard day. He started destating during the night to down low like 30 and 40s and kind of glazing over. Long story short, after doing this all day they started thinking it might be seizures. So they hooked him up to the EEG again and it confirmed that he was. They had tried to wean his phenylbarb dose yesterday and obviously he couldn't tolerate it so they are going to bolus him and increase his dose. He will stay hooked up to the EEG until they get everything calmed down. Other then this set back he is doing well. Just wanted to keep everyone up to date. Thank you for your continued prayers.

Another day closer

Mason had a good day. I think we got some good news but we will see for sure once we talk to ID (infectious disease) tomorrow. The culture from 9/23 that had come back positive was called back in today and it said inability to grow which means it was a contaminate. We have to see if ID will be "bless" this news. Their plan this morning (before we got this information) was 3 more cultures were needed and they needed to be negative and if that was the case then they would add on 3 more weeks of antibiotics. If any of the 3 cultures came back positive then we would have to remove the EVD. So we will see for sure what they say tomorrow since it looks as if this culture was contaminated. Mason is doing ok with his breathing and his feeds. All of his labs looked good and his platelets were up to 75. They are going to increase his feeds 3 times a  day until he reaches maximum feeds and he is now getting lasix three times a day. He had PT and OT today and he did pretty well. His hamstrings and pelvis are pretty tight but responded to stretching. She thinks it is mainly because he has been guarding his belly. They also ordered speech therapy to start working with his oral motor skills. So, all in all a good day. We just have to wait and see what ID says tomorrow. Thanks for your continued prayers.

Waiting

Well, neurosurgery came and drew off some fluid and sent it off for culture. The plan is 3 more negative cultures are needed and then they will feel safe saying that the one positive culture was a contaminate. So now we wait. And pray. Otherwise, Mason is doing good. We haven't had labs since Monday and we have them tomorrow so I am praying that they all look good (especially platelets). They were 52 on Monday so I am really hoping they haven't bottomed out. His lungs are still wet so she is giving him lasix to try to help with that and they are increasing his feeds every 12 hours again until they get to maximum feeds. He decided to become a night owl and was awake from midnight to this morning. His nurse said he was sucking on his passy like crazy and would get annoyed when he lost it. Silly boy. So of course when I was there he was passed out and had finally gone to sleep! So hopefully we will keep moving in the right direction and get some good news in the next couple of days.

"Never be afraid to trust an unknown future to a known God." - Corrie Ten Boom

Another bump in the road

Today we got some not so great news. They had done a total of 5 CSF (cerebral spinal fluid) cultures to make sure they would come back negative for bacteria after they had taken the reservoir out. Well so far all of them had been negative on everything except for the last one. It came back today on the gram stain positive for 1 + bacteria. It is very weird that it would be that way and I am praying that it is just a mistake. Please join me in praying. Also, his cranial ultrasound showed an increase in hydrocephalous and it is pushing over to the right side which makes them think that the EVD isn't working. It has had some out of it so we really aren't sure what is going on. Please pray for this all to resolve and for them to figure it out.

Other than that Mason is doing well. He is tolerating his feeds and they increased them to 2 cc/hour. He stays awake some and sleeps some. His breathing is doing ok and the lasix seems to be helping it. So we hope that this can be resolved easily. I know they are getting infectious disease involved again to see what they want to do and I am thinking they will probably send off more cultures. So I will keep you posted but please pray for healing again. Below is a video that my mom put together of pictures of Mason from birth to now. We thank you all very much for your prayers for us and our little boy.

Our boys

We sure have been blessed by our sweet boys. We try to cherish every moment that we have together. Corbin has had a little bit of a runny nose and was running a low grade fever (99) and hasn't been able to go see Mason. He has asked to go see his brother at the hospital but his Daddy told him he couldn't go because his nose is running. He requested some "pink medicine" to help his nose stop running and the other night while we were saying prayers he really touched our hearts. He said, "Dear God please help my nose stop running so I can go and see Mason." It about made us cry. He is such a good big brother. He is growing up so fast. Can't we slow down time? When we were at Target the other day he picked out this Halloween outfit and toy for his brother:

He LOVES to talk about anything and everything tractors and is such a big helper!

I swear he looks like he is about 4 here.

Helping Mommy pick out some mums.

Our other boy is doing well. He had several bowel movements last night so they were able to restart feeds. Yay! His lungs sounded pretty wet and he was requiring more oxygen so they did increase him to 2 1/2 liters today and did a chest x-ray. They look pretty wet so he is going to get some lasix every 12 hours to help. It is already helping him by tonight. His platelets were 52 so up 2 since yesterday. Hopefully we are going to keep trending upwards! He was wide awake for a little while when I was up there and I got some pictures. 

Staring right at Mommy.

What is going on around here?

We sure do love our boys!