Cooper's Medical fund
Two years ago, Cooper underwent his fourth heart operation. His mitral valve was so bad surgeons had to replace it. His parents researched any and all alternatives to the standard heart valve replacement which would require a specific diet and strong blood thinners. Boston Children’s hospital was starting a clinical study where they replaced a child’s mitral valve with a Melody Valve. The Melody Valve is designed as a replacement for the pulmonary valve. It is bovine tissue wrapped around a cardiac stent frame, with a bovine valve in the middle. The Melody Valve can be increased in size during a heart catherization. The Melody Valve does not require the patient to be on strong blood thinners, instead Cooper takes one baby aspirin a day. Cooper was the eighth child in the world to have the Melody Valve placed in the mitral position, first performed in New York.
Cooper has grown immensely over the past two years. His valve needs to be dilated to keep up with his growth. He is leaving for New York to have his Melody Valve made larger. His surgeons are optimistic that this procedure will go without any problems. However, the valve is large and blocking the blood leaving the heart, creating other issues for him. If the doctors are unable to reduce the pressures in his heart with a balloon dilation of his Melody Valve, they will have to replace it with another valve which means another heart surgery.
Cooper is very active and extremely happy. He is looking forward to his trip to New York. He is excited to see his family that he has not seen since his last open heart surgery, just two years ago. He knows that his catherization will go well, and he will only spend a few short days in the hospital. Cooper has been fighting this fight for his entire life, please donate what you can and fight with him!
Those of you that know the Ascone Family, know just how wonderful they are!! Some of you only know them through their story, but one thing we all have in common is our LOVE for this little boy!! You can't help but fall for this child. His story is compelling and heart breaking!! I know many of you want to help, but don't know how. Here is your chance. Insurance does not cover all these surgeries, and Cooper is going to need more through his life. The Ascone's are faced with so many medical bills. Please help lessen the incredible burden this family is dealing with. As always, they will keep us all posted on how this visit to NY will go. Lots of prayers their way!! Please share this on your Facebook page.
Cooper just had his Cardiology follow up. From his last visit, ten days ago, he's gained two more pounds and grew a quarter of inch. His new valve is functioning really well and his pulmonary hypertension is lower. His picc line was removed today and his blood levels are within therapeutic range. It is a great day! God is good! So proud of how brave my little man is too!
Update by Tommy,
Cooper was discharged today!!!! We convinced the docs to let him go a day early. His INR dropped to 2.8 all other meds were discontinued except for his antibiotics.
I had a meeting scheduled with the antibiotic company for 3 pm. Coops discharge would follow shortly after. The person I was meeting with arrived at 5. He looked aggravated when he walked in the door. We spoke about the meds, I signed some forms and we wrote out a medication schedule.
The company was sending s nurse to the house to go over the medications with me. He arrived at 8pm, then meds were supposed to be at the house by then, they were not. He came in and changed Coops dressing and we waited. Cooper was sipping his Coumadin. At 1030 the driver arrived with a large box containing medications, tubing, locks, gloves, paperwork, an a mess of other things. We started Coop on his meds and I thanked the nurses for waiting with us this evening.
I wrote out a medication schedule that we need to follow the next two weeks. I can do my part by waking up every 8 hours and give him his meds, but I need him to help me do his part. He took thee hours and two different drinks to take his Coumadin. I need to learn how to calm down. I'm so frustrated with him not wanting to take this medication. His sildenaphil that we orders did not come in flavored. He will not take that either. I have to call the company tomorrow and see if they can send me a new batch.
I ll update more of what happened today and our plans for tomorrow in my next post. I just finished giving him his iv meds and need to get some rest. They start again at 7.
Today was amazing. I woke to find the nurse taking labs from Coops IV line. She did not stick a needle into his arm making him cry. Labs came back a few hours later...3.3!!!! Cooper is finally therapeutic. His meds were reduced yesterday, hopefully he will remain therapeutic so we can go home.
The team on the floor rounded. It was a large heard of lab coats. I recognized two doctors from the ICU and previous visits. The rest were new residents with the school patch newly sewn onto their coats. Today's report started with "this is Cooper the now 7 year old with Shone's complex." Everyone wished him a happy birthday, he had the largest grin on his face. They spoke about their plan and of course, I did what I do best. I asked for a different plan. They wanted to continue the Ativan and Methadone ween. These meds knock him out, I cannot get him to swallow meds after he takes them. One of the new doctors that I have not met said that he was good with removing one but not both. The Docs that I know from previous visits asked if I would let them know if he had any withdrawal like symptoms and of course I agreed. They removed both meds. I asked if we were going home on Lasix. They said with the last x-ray that we may. I reminded them that x-ray was taken 5 days ago. They looked through their computers and discontinued the Lasix and ordered a new x-ray.
We spoke briefly about discharge. They feel we could be discharged on Wednesday and can fly home on Friday. He may be able to be discharged tomorrow, we are not sure and will find out after rounds. I asked for a discharge echo, hoping that we would not have to return in a week for our typical follow up. I asked if we could follow up back home next week. They felt that would be within reason.
Today the hospital had a special guest, hall of fame hockey player Rod Gilbert from the NY Rangers. Cooper was in the playroom playing air hockey when he walked in. He stood next to Coop for some time while staff took pictures. He helped coach Coop on playing great defense and showed him how to distract his opponent while on offense so he could score. It was a fun experience watching them interact. I asked Coop if he know what hockey was and he said yes. Hockey and basketball are two sports that are seldom on in our home.
We went for a walk in the garden today. It was beautiful outside, and we took advantage of it. We walked around, I showed him where the Chapel was. He held the phone and played Pokémon. He was excited, he caught new guys that we did not have. We headed back to the room just before six,he needed to take his Coumadin and his pumps were beeping.
We tried to take his meds by mouth tonight. He did great, but threw it up. He also threw up his NG tube. I split this dose up into three different containers. Each container held a different milligram amount totally 8mg. We started with 1mg and that is when he threw everything up. I left before they replaced the NG tube. He wanted diner and I just could not watch them put it in again. I returned to find him sitting up in bed and no NG tube. The nurse stated they were going to give him his meds orally by giving him a chocolate milk shake. Surprising he drank it and kept it down.
Just now at a quarter to midnight the nurse asked me howmuch medication he threw up earlier. I told her just one milligram. When they reordered his dose it was just after shift change and they reordered the 1milligram that he threw up. The night nurse did not understand my question when I asked how much was in the shake. They only gave him 1 milligram tonight, they are going to get the rest now, wake him up and try to get him to drink the other 7 milligrams. This is the constant ups and downs of the hospital. I hope he will be ok and we can still leave on Wednesday.
Last night I left out some very important thank yous. Nana and Papa have been taking great care of Chloe and Carter while we have been in the hospitals in Florida and New York.They were treated to a lot of their past. They drove them to and from school. As well as baseball and soccer games. They kept everyone busy, keeping their minds off of Cooper not being home. They had great help from many people in the neighborhood. Nana and Papa were able to get some breaks because of friends like Priscilla, Jenn, Mimi, and Teresa. All of whom took the kids to their houses and played with them. Jenn and I cannot thank you enough. If by any chance I forgot someone I’m sorry it was not intentional! We really appreciate all of the support we have received.
Tomorrow I will try to find out if the INR machine has shipped. We have had some paperwork issues. There is a little confusion from the company supplying the device. I hope everything was sorted out today. I will also meet with the company providing the antibiotics. If they are delivered tomorrow, I don’t see why we would need to stay another day. I am not going to get excited about leaving tomorrow, it would be devastating to get our hopes up only to have to stay another night.
I will update tomorrow’s numbers. I will pray that tonight’s misunderstanding does not set us to far back. Just as I was about to hit post the doc came into the room and explained the situation. Surprisingly I was very polite about it. I wished her luck on waking him up and giving him his meds. I suggested that she should consider putting down the NG tube. It took them 30 minutes but they were able to get him to drink a chocolate milk shake. I brushed his teeth and he is back to sleep. No set back! I hope!