Sunday, June 29, 2008
Wednesday, June 25, 2008
The pain now for me is all the issues with our health insurance and Mason's medical bills! Sometimes it puts me in tears, cuz it is just not fair when you have a baby with very critical health problems, and you are having to fight with the insurance over bills they should be covering. And you don't ever get someone on the other side of the phone call who has any idea what you have been through! We did finally hear yesterday that we finally won something we have been appealing over Mason's January PICU bills. This was good, but it seems to be never ending! Mason received Institutional Medicaid as a secondary insurance for Dec. and Jan. because he was in the hospital for more than 30 consecutive days (48 to be exact), which we thought was a huge blessing, but to get our own insurance to coordinate and cooperate with them has been absolutely horrible! Mason did not qualify after January for Medicaid, because if you have more than $10 in the bank its almost impossible. We as Americans need better health care coverage overall!!!! That's my soap box for the day.
Don't get me wrong though. Mason is worth every penny and every ounce of stress! Mommy loves you Miracle Mason.
Thursday, June 19, 2008
Mason is doing well at home. Our nights have been long as expected, but hopefully his sleeping will get better as he continues to recover and feel better. I think he must still be having headaches, because he is just not his smiling self yet. He is on 1/4 liter of O2 to help keep his pulmonary artery wide open and so he does not have to work as hard. They said at his clinic in 2 weeks they will do x-rays and check sats, but he probably won't have to be on it anymore after that. He also came home with a feeding tube to help with feedings if he tired out and also it makes giving medicine a whole lot easier. But that lasted only 2 days! I think it was bugging him more than it was helping, so the N.P. told me just to take it out because he is eating just fine.
It is so great to have him back home so much quicker than the 1st surgery. We are so grateful for all the prayers, child care, meals, gifts, and all the loving support.
Tuesday, June 17, 2008
Monday, June 16, 2008
Yeah! Mason made the move to the 3rd floor today! This means he is doing good enough to be out of the PICU! He already seems to be much happier, away from the hustle and bustle of the PICU. The docs and nurses say how impressed they are with how fast Mason has recovered from his horrible set back last week. He is our fighter. We just hope he does not pull any of his typical "Mason Unexpected Business" before we are able to come home. He looks so good. Although, he totally has his nights and days mixed up. He slept just 3 hours the whole night last night and 1 hour the night before last, but slept in my arms for 2 pretty long naps today. Could be some long nights ahead when he comes home! I guess no different then what I'm already used to.
Mason's big sister and brothers came to visit today after Sammi (My Mother's Helper) took them to the Zoo today. Mason was so happy to see them and they were so excited to hold him! Thanks so much Sammi.
Mason is trying so hard to "behave" himself so he can home and hopefully that will be real soon.
Sunday, June 15, 2008
Mark and I went to church at the hospital today and it was a very special meeting. One thing especially stood out to me in a story that was told. Someone was asking Heavenly Father in prayer, "why is this happening to my child?" and the answer he felt and heard was "who are you...this is my child too." Wow, how that hit me. The pain my little Mason feels from having his broken heart is just as hard for Heavenly Father to watch as it is for us. We are never alone, especially during our most sad moments.
So, Mason will be moved to the 3rd floor in the morning. He was ready today, but the docs prefer not to transfer on the weekends, because there is less of a staff up on the floor. That is okay with me because he is watched a lot closer in the PICU and I feel more comfortable leaving him. Thanks to all if you who continue to pray for Mason and our family. We could not do this without all your support.
Saturday, June 14, 2008
Friday, June 13, 2008
Mason took a road trip down to radiology for the floroscopy on his diaghram. And boy what an ordeal, taking all his medicine pumps, monitors, and the ventilator along for the ride. I wish I had taken a video. Anyways, his diaghram was just fine. Yeah! Then on Monday they will do a swallow study, (they watch him swallow barium over x-ray), just to make sure there is no problem before he can feed by mouth. Possibly we will move to the 3rd floor on Sunday.
Also, Mason has one of his favorite nurses today, Jean. (She let me hold him before and after his 1st surgery when other nurses said he had too many lines in still!) All the nurses are fabulous though. They are so well educated and you know he is always in good hands in the PICU.
Thanks always for all the love and service.
Thursday, June 12, 2008
As for last night, he was able to come down on his % of oxygen on the vent and he was able to wake up and not get too agitated throughout the night without dropping his o2 sats except for one time around 1 am when she gave him some more pain meds and paralytic. (That was what was happening yesterday, so they had to keep him on paralytic medicine most of the day.) But since then he has done pretty good. I did stay the night. I just needed to hold his hand and rub his little head. I couldn't stand to leave after finding out the true story about Tuesday night.
They are thinking this was from aspirating during a 9:30 pm bottle feeding w/the nurse. There is still junk on his right lung and tomorrow plan to do a floroscopy to see if there is any damage to his diaghram. Please no! Poor little Mason just has no reserve, but definitely a strong will. He will be on the vent for probably 2 more days and then baby steps to recovery. Thanks for all the prayers. it surely helps us all get through this.
Wednesday, June 11, 2008
Tuesday, June 10, 2008
Mason is much happier when he is asleep and no one is touching him! He was pretty mad in the first picture when they were doing an EKG. But, do you blame him? For the most part, he had a good day. The nurse took out his IJ line in his neck and tomorrow he will probably get out the RA line and Art line, plus at least 2 of the 3 chest tubes. So this means I will get to hold him and nurse him. Although, he behaved himself really well today and took 2 bottles of breast milk while I was there and hopefully Will do the same for his nurse tonight. He didn't really like having to take the bottle just laying flat in his crib, but I think because he was soooo hungry he did! Good boy Mason. He still seems to be in pain and very uncomfortable, and I just want to hold him and make it all better! Thank you again to all those helping with our kids at home, and for all your sweet thoughts and prayers being sent our way! Have a good night.
Monday, June 9, 2008
I forgot the computer attachment to post a picture. So if we go home tonight we will do it then. Thanx for all your support.
At 1:15 Dr. Kouretas came out and said all went well! He also said that he would have removed the clot, but it was gone! What a miracle. He was on the bypass machine 100 minutes and came off well. We are going to see him right now in the PICU. We had to wait an hour. Will post with anything new. Thanx for all your prayers. Sincerely, Summer
At 7:40 we said our goodbyes and gave Mason kisses, then they took him to the operating room.
At 9:00 they called to tell us that they had him all prepped, had his lines in and they were about to get started.
At 10:00 Bonnie, the Cardiothorasic N.P., came to tell us they had just got him on the heart-lung(bypass) machine, because of scar tissue it took a little longer this time to get to the area they will be working on, and then they started the Bypass.
At 11:00 Bonnie came to tell us he did the repair on the valve, and now was beginning to work on the SVC attachment (Glenn). He will probably be in surgery untill 1pm.
Sunday, June 8, 2008
Also there has been a trust fund set up on behalf of Mason Andrew Strickland at Wellsfargo bank. To donate you can call or visit any Wellsfargo branch. Mason may reach his lifetime insurance out of pocket before he is 3 years old! We appreciate any donations. This fund will help pay for future medical costs. Thank you.
Saturday, June 7, 2008
TORN BETWEEN TWO LOVES
It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that she is just going for a visit. She is still not swayed on this idea. So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work". But the little angel is still a little scared. She asks,"Will I be okay with only half of my heart?" Jesus replies,"Of course you will, I have other angels there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan. He says "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart". "Enjoy your time with your family, play and laugh everyday." "And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves."
We love you so much Mason!
Tuesday, June 3, 2008
His surgery is still planned for next Monday, June 9th. We take him in on Sunday for preop tests etc.. We plan to be there about 2 weeks this time (I sure hope). It breaks my heart to think about him being opened up again & going through this all over again. Although, I know its time, he is needing O2 most of the time now, and just does not feel well. I just have to remind myself we are not sent trials that we can not handle!! Mason is so strong! Stronger than me! Please remember him in your prayers, especially on Monday.