We are getting ready to go to our very first "Step up for Down syndrome" walk today!!!! So very excited and all of our family and friends are coming to join us! **Be ready for photo overload when we get back**
On a different note...I have an update on baby Justice:
Tonight there are no prayer request for Justice. There are no beeps to listen too. There are no gases to check. There are no monitors to watch. Tonight Justice is dancing around the throne of God with a complete and new heart. Justice will not have to have any more surgeries. Justice will not have to take medicine to help his heart function. Tonight Justice is in the presence of the Almighty One. Justice's time on earth was short. It was 28 days of surgeries, cath labs, pokes, and prods. He amazed the most talented and gifted doctors and nurses. He also made them scratch their heads. We enjoy our 28 days with him sitting by his bed, rubbing his little hands, kissing his little feet, and making funny faces at him. He was a pure joy to have in our life. He served his purpose. God ordained and orchestrated for his earthly life to begin on September 30, 2011 and end on October 28, 2011. He accomplished more for the kingdom of God that many will accomplish in 28 years, let alone, 28 days. Sara, Noah, and I will have the awesome privilege of sharing his story during our time here on earth.
Justice passed away a little before 330. He was 28 days old. Thank all of you for praying. Love all of you. To God be the glory
Please continue to pray for the Perry family through this difficult time.
Mason had another echo on Wed and showed the fluid is still the same. We have another appt on Monday (not Friday like we were told). We will consult with the surgeon the first part of next week. Im very glad for this because we get to attend STEP UP FOR DOWN SYNDROME walk now!!!!! We raises over $1200 for Down syndrome and we are so so so excited to join in on the largest celebration for people with Down syndrome!!!! Thank you to all who donated!! They are still excepting donations till tomorrow~ ;)
On a different note...Remember how I had mentioned prayers for 2 heart babies...well here are their updates:
We just met with the doctors after Justice's surgery and medically speaking there is no more they can do. His brain shows signs of bleeding and his kidneys have gotten worse over the past few days. These 2 issues and more disqualify us from being able to be placed on the ...transplant list. Justice's heart has gone into cardiac shock and is not functioning on its on. He is still hooked up to a pacemaker and the ecmo machine is still providing for him. We now have 2 medical decisions. We can either turn the ecmo machine off all at once, or we can slowly wean down and then stop it. We are not and do not have to make that decision tonight.
We are continuing to pray for Justice and his family. They said this morning
Due to the bleeding in Justice's brain, they believe he is having seizures. He is comfortable and very alert. We sleep more over night than he did. We will begin weaning down ECMO at noon and will wean down as the circuit allows. When we are the lowest we can go we will then clamp off and it will be up to Jesus & Justice to do the rest
We will continue to pray for Justice and his family.
Emmrie is doing better and hopefully be going home around Thanksgiving... She still has a long road to recovery though.
Thank you agian for all your prayers for ALL the babies
Dr. G said that the fluid is still roughly the same. He didnt think it had increased or decreased. Then he sighed and said we have a new problem. The fluid around the heart is starting to thicken. We were told if this continues it is life threatening. So Mason will have another echo on Monday & a consult with the surgeons at Childrens Mercy to see where to go from there. If it is still thickeing then Mason will need surgery right away. We are praying the steriods start helping and the fluid stops thickening.
We ask for your prayers this weekend. We know what the power of prayer can do!
Also I would like to put 2 little babies on the prayer request also.
First is for Baby Justice - He is a few months old, had several heart surgeries, is doing a final surgery today...if it doesn't work they will be having to face taking him off heart support. He is in surgery right now. ++++++UPDATE FOR JUSTICE++++
Sorry about the choppy updates this morning. Last night around 7 p.m. we started noticing more drainage out of the drainage tubes than there had been. This alarmed our awesome nurses and ecmo specialist so they called our surgeon and began doing med therapy. They decided they would have to go in an examine everything to see where the blood was coming from. When she went in the bleeding had stopped, probably due to the therapy, but she noticed the shunt was clotted again. With his state of being opened for 20 days now, and with having other major procedures done to his heart, and him being on ECMO 2x, they have very limited options of what they can do. All of the doctors came together and agreed if his films & eco's showed he had enough of his right heart, they would attempt 1 more procedure. It was either attempt this or turn the machine off. We are still fighting and believing so we opted to do this one last surgery. There is a very high chance that he could pass away during surgery, more higher than in the past due to all the already listed circumstances.
All that being said, we know who the great Physician is. We know that He is in control. We believe that He can and will Justice. Sara, Noah, and I do covet your prayers. Sara and I have not had much rest this week, but know where our sustaining comes from. Keep praying and keep spreading the word. We are suited up, and we are charging full speed ahead. SUIT UP!!!
Also pray for Baby Emmrie- She is 1 day older than Mason, she had the same surgery as Mason, At CMH also! She is having the same complications as Mason did but is still in the PICU.
I ask for added prayers for these babies. Mason has so many prayers going out for him that I want to "share the prayers" with these other babies that need just as many prayers as Mason.
Mason will have another echo tomorrow morning at 8am. They are looking to see if the fluid has increased again. We are praying that the fluid is the same (or less!!). They put him on a steriod to help with the fluid and we will see if that is helping.
The "original plan was for Mason for surgery to take 2-4 hrs, 2days in PICU, and home in 5 days. Well that didnt happen what so ever!
First off Mason's surgery lasted 7 hrs. Since he had to be put on bypass twice & on bypass for twice as long, recovery was long and hard. He was to get his breathing tube out the next day after surgery....well that didnt happen either. Mason had a difficult time with his recovery . He was on the ventilator for 5 days. Things kinda snowballed from there.
Since he was on bypass so long he was on the vent for 5 days> since he was on the vent so long he got pneumonia> because he had pneumonia he couldnt leave the PICU.
He was in the hospital a total of 16day. Mason also had Chylothorax (A chylothorax (or chyle leak) is a type of pleural effusion. It results from lymphatic fluid (chyle) accumulating in the pleural cavity.) We noticed when he finally got to eat that his drain tube from his chest had a milky color to it. Well it only got worse the next few days. Appearently the surgen cut into Mason's lymphatic duct or system and he was leaking lympatic fluid into his body. They said if it didnt get better then he would have to stop breastfeeding and be put on a special formula. **Momma was not happy. Finally about 6 days later it was getting better and finally stopped all together. *PS* they couldnt take his drain tube out untill the Chyle was gone. We were so thankful that it was healing a they could finally take his drain tube out!
During the same day they took his drain tube out they asked me if Mason still sounded hourse... I told them yes. I thought it was from the vent tube (they said he would be hourse for a while). Well they said they wanted the ENT to come and look at him just in case. So shortly there after the r ENT Dr came in and used a long camera and looked at Mason's vocal cords. His findings were upsetting. Mason's left vocal cord is paralyzed right now. They think the nerve is "pinched, bruised, or cut". We will know more in about 6mo. So right now Mason has a very quite cry and raspy voice. They said it should get better with time....... Im praying its only bruised.
The rest of our stay was just "keeping an eye on him" type of stuff and pretty uneventful. All I can say is that I am so very glad we are home!
It has taken a bit for us to get re-situated at home. Mason kinda had his days & nights mixed up the first night. But being the wonderful baby he is ...He is back to sleeping through the night. Colby is glad to be home as well! What a feeling it is to have all your family back under the same roof. AMAZING
Well since I didn't do the best job of updating everyone during Masons recovery...I will do a quick rundown of the 17 days we were at the hospital. YES 17 days. Honestly we went in thinking 5days..7days tops! Boy were we wrong.
First was our "pre-op" day. *LONG DAY* We did an echo, EKG, blood draw (that ended in Mom & dad crying, Nurses grumpy, and Mason purple & needing oxygen) Then filled out a TON of paperwork. The nurse then tells us there is a 50/50 chance we wont have the surgery on Thursday..... The PICU was full and didn't have the room for us. ***INSERT PANIC HERE*** I almost started crying. We prayed & Prayed the rest of the day. We waited for the phone call that evening to tell us yes or no....well they never called. So I called them! 25min, 12 transfers , and 3 call backs we had our answer...YES for surgery. ***Side note** ( Our friends Adam & Suzy's little girl, Kandise, was having surgery on Thursday as well. We went through all out pre-op appointments together (that was so so nice to have friends there with you doing the same thing) We were both told a 50/50 chance of surgery. Then Adam and Suzy said " If it comes down to Kandise & Mason...Mason will get the surgery." (to have them say that was un selfish of them.) both were to have surgery at 8am... But they got a call at 5am that their surgery would be Friday morning instead.) Kandise is now doing well and is home with her parents!*****
Thursday morning was difficult to say the least. Knowing that I was going to have to hand over Mason was killing me inside. The fear & worry of the unknown was hard to deal with. Finally it was time to hand him over. We walked to a side door to a little hallway. Lining that hallway was all our family & friends. All standing there to support us. My Mom & Dad, Cory's Mom & Dad, My sisters Jen & Amanda, My BFF Bec, My SIL Liv and our pastor Mark were all standing there with tear filled eyes as they each kissed the top of Mason's head. Then came the hardest moment ever...handing Mason over to the Doctors. Words cant describe it, and very few parents will ever know what it feels like. Hardest thing I have ever done.
Mason's surgery was to take 3-4 hours. Our first update from the OR nurse was 1.5 hours after we handed him over. They hadn't started yet, they were having a very difficult time getting Mason's lines in ( He had 42 needle marks on him after surgery.) Next update was 1 hr later saying they had started and he was doing good. Next was his upper hole was fixed. Then the valves were being worked on, then the lower hole was being fixed...then they ran into trouble. They had fixed the bottom hole, stitched up, took him off bypass, and did an echo....There was another hole. So they had to open him back up , put him back on bypass, and repair again. Finally they came to tell us he was on his way to recovery and we would see him soon. 7 hours after we handed him over.
When we finally go to see him *7pm* he looked awful. He was cool to the touch, on a ventilator, and puffy. But I was so glad to see him. Our nurse that night was amazing (THANKS ANNIE) and took great care of Mason those first few night in the PICU.
**Mason decided he is hungry...I will finish the rest of our Journey update tomorrow!
Mason is doing well! Recovery has been slow but is steady now. Mason is down to just the chest tube and oxygen( tiny bit). He looks so much better than before. He is also acting like himself more & more. We are hoping to remove the chest tube tomorrow hopefully! He is just doing great!!! Thank you for your prayers for Mason and our family.