Sunday, June 29, 2008

Mason's Heart Buddies

Mason has had a good week! We are still working on the sleeping issue though. ( I feel like a zombie most of the time!) I just wanted to do a quick post in honor of all of Mason's little heart buddies. Some of them have had a tough week and could use some extra thoughts and prayers sent their way. We have made some great friends through all of this "heart surgery business" and want these other heart kiddos' families to know how special they are to us! My kids always pray for "Mason's heart buddies" in our family prayers. It is so cute. There are three especially this week who have struggled; Kaidence, Teagan, and Parker, and I'm sure others that I'm just not up to speed on yet! We love you guys and hang in there.

Wednesday, June 25, 2008

Mason is good but, Insurance Issues are a Pain!

Mason is a little happier each day. Monday he had a check up at our Pediatrician, Dr. Todd Whiting, and he was so impressed with how good he looks. He weighed in at 11 lbs 3 oz, which is back up to his pre-surgery weight! He is little but his growth is steady. His sats were good too. He still is just not sleeping too good, but Dr. Whiting gave us some Tylenol 3 to try and that has made a difference. He will go a whole 3 hours at night which is better! I'm assuming his headaches are worse when he is tired and when I lay him down. Although, I do try and keep his head elevated. However, his smiles are back, now we just need to give him some good time to fully recover.

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

At Home

Big sister Kaitlin is happy to have Mason home!

The kids made this cute sign & hung it on the garage.
Mason was so happy to be leaving the hospital.Mason is quite excited to hear he gets to go home!

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

Home Again!!!

What a great surprise! Today on rounds the dr's said Mason was doing so good they did not see any reason for him not to go home! So we packed our things up and brought Miracle Mason home this afternoon. He is all smiles because he is back home. He does not want to see anymore green scrubs for awhile. He is still on some lortab for the headaches, but seems to be feeling much better. He just need lots of rest. It takes the heart 6-8 weeks to recover from surgery. I will post more and some pictures tomorrow hopefully. Mason and our other 4 kiddos need me right now.

Monday, June 16, 2008

Moving Day

Mason finally gets to wear clothes. (In the PICU babies are in diapers only.)

Big brother Preston holding Mason when he came to visit.

Big brother Braiden taking his turn.

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

Sunday is a great day!

Mason is doing very good considering all that he has been through this week. He had all his lines taken out, including the pacer wires, so it was much easier to hold him today. I was able to nurse him and rock him to sleep a few times. It was wonderful. He still has an NG (feeding) tube 'cuz he won't take a bottle from the nurses and I needed to go home tonight so we could have dinner as a family for Father's Day. He is such a stinker! But Oh how we love him and so glad he was happier today. He is still a bit irritable like he still has some pain, understandingly so, but a little medicine seems to take the edge off. He is breathing great and is just on a 1/4 liter of O2, probably will come home without, well I sure hope so. Or Ammon will be back to playing with the O2 generator again!

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.

Happy Father's Day

Mason had a good night. Although when I called at 6am, our nurse said he was awake most of the night. That's our Mason! The Dr. decided to keep him on tube feeds when he wouldn't take a bottle from the nurse last night. Which is okay, maybe he can put on some extra lb's since they are fortifying my milk and he is not burning calories to eat. Why not...he can't taste it through the feeding tube. He won't touch it if he tastes it! Today when I get there he can feed by mouth again. I know they also took out his RA and ART lines early this morning, which is great. That is another step forward. We will go spend the day with him in a little while and find out today's plan and goals for Miracle Mason.

I wanted to take a moment to say Happy Father's Day to Mark, my dad, my step dad, my father in law, and all the other Dad's out there! You all are a very important part of our lives. Mark spent his birthday in January up at the hospital with Mason and I, and now today we will spend Father's day up there. I guess just the luck of the draw, but I know he is so grateful for everyday he can spend with our little Mason. Also, he has so many times gone home to sleep with the kids when I have stayed with Mason, which has been so important to our kids. They have slumber parties in mom and dad's room. Thank you Mark for all you do.

(The picture above is of Mason and Mark right before they took him to surgery Monday morning, 6/9/08)

Saturday, June 14, 2008

A Big Step Forward!

Mason had a good night. He passed 2 spontaneous trials on the vent and his labs looked good after, so they extubated (took out the breathing tube) him around 9am! Yeah! He is much happier. But, he still seems uncomfortable and they have come down on pain meds, weaning him so they can move us up to the 3rd floor soon. The best part of the day is that I got to hold him (thanx to Jean, Mason's favorite RN!) and feed him (they decided to skip the swallow study.). He did not want the bottle though, he wanted it straight from the source! He's a stubborn little guy. This now may make it difficult to go home at night. I will post pictures from the last few days later, I haven't been able to get it to work.

Friday, June 13, 2008

Road Trip to Radiology

Mason is just sleeping the day away. I think he is starting to feel better, he is still getting different pain meds and anxiety meds but they have come way down on his doses, and he has been resting most of the day. i am so glad because that is what he needs. When he has awoken I have held his hand, rubbed his head, wiped a few tears from his eyes, and then he falls back to sleep. All his labs have come back good and he is breathing above the ventilator today. So they have started to come down on his ventilator rate to wean him, and will do spontaneous trials tonight. Hopefully they will extubate him tomorrow!

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.

A Good NIght

Mason had a pretty good night. I called the nurse at 6am and she said he was doing well. His lungs sound and look better and his o2 sats are really good. We will be there in a little bit to get the real scoop from the docs.

Thursday, June 12, 2008

Mason's Tearful Moments

Mason had a pretty good day. He got his chest tubes out and I think this helped him feel a bit more comfortable. His swelling has come down a lot and he looks much better. He is still quite sedated but he did not need any paralytic meds today. He awoke several times to see us and seemed comforted by having us by him. But, a few times he reached to hold my finger, got a sad look on his face and would try to cry, but with a the breathing tube down his throat he couldn't. Instead, his little swollen eyes would fill up with tears and roll down his little cheeks. As I reached for a tissue to wipe his tears I then began to cry. This is so hard! Harder than the first surgery because I am so much more attached to my baby. He is six months old and wants his Mommy (his comfort blanket) to hold him and rock him to sleep. He knows so much more than when he was a newborn. One of the attending dr.s walked by during one of these tearful moments and decided to give him a different med to relax him. It seemed to help, because he was peacefully sleeping when we left to come home tonight.

Tomorrow they plan to start weaning him from the ventilator, hopefully extubated on Sat. And he will get a floroscopy on his diaghram. Also, he has been getting "mommy's milk" through a NJ feeding tube. So after he is off the vent he will need to do a swallow study to see how his function is because of the aspirating episode. If all is well then he will get to start feeding by mouth again.

Thank you to Mason's little heart buddies who have come to visit as well as other friends and family. Everyone is so wonderful to help at home with kids and meals too. We love you and keep praying for our Miracle Mason.

Baby Mason has a strong will!

Mason had a better night last night than the previous night. We did find out that his episode on Tuesday night was pretty major. More than the docs on the phone had led us to believe! They "coded" him and he had many docs, nurses, rt's, and even an anesthesiologist at his bedside to stabilize him. And they had to do a couple minutes of CPR after they intubated him because his heart rate began to drop (but at least never flat lined like he's done before!!!) Mark and I were pretty frustrated we did not know how critical things were.

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

Doing a little better

Last night has created quite a set back for Mason's recovery, but he is doing a little better as the day goes on. He is a lot more swollen today and has some fluid on his right lung, which they are attributing to his possible episode of aspirating. He is very sedated and has also been on medication to paralyze him most of the day. It is soooo hard to see him like this, because he is normally so alert, happy, playful and now he can hardly open his eyes to look at me. He has a few times though, and also reached up a little bit to grab my finger. At least he knows we are here. So the plan is to just let him rest on the ventilator for a couple of days now. He sends his love to all of you especially Kaitlin, Preston, Braiden, & Ammon at home XOXOXOX.
( in the picture on the right they are doing an EKG)

A Rough Night

I should have known things were just going a little too smoothly. Last night they had to re-intubate (breathing tube back in) him cuz he was extremely struggling to keep his o2 sats up! It was a horrible phone call to get at midnight! They aren't exactly sure what set him off. Possibly, he aspirated taking the bottles yesterday, or possibly an infection... they have run blood tests to see if its RSV or something nasty like that . We will know later this morning. For now, he is more sedated again because of the breathing tube and they started some strong antibiotics to cover if there is an infection. Poor little guy! He was doing so good. Please remember him in your prayers today. I will update later.

Tuesday, June 10, 2008

I want to sleep...just leave me alone please!

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.

Mason has pink cheeks!

I got here this morning and they had extubated (got the breathing tube out) him. Yay! He seems happier than yesterday, but still uncomfortable. Thank goodness for pain medicine, it helps calm him down. His coloring is much better today. He even has pink cheeks! The next hurdle will be this afternoon when he can start to get food. He still has chest tubes in so I won't be able to nurse him. Hopefully he is hungry enough to take a bottle of my pumped milk while laying in the crib. He has become so picky. If he won't the dr. said he may have to get an NG tube back in for a few days. I hope not though, he does not like those NG's. Also, he did weigh in at 11 lb's 2 oz. yesterday before surgery! Good job Mason. Thanks for all the comments and thoughts of love and support. Love Summer

Monday, June 9, 2008

not ready to go with out the vent yet.

Mason's not quite ready to lose the breathing tube yet. The docs decided to let him rest tonight and try again in the morning. We are so exhausted, and need to try and get some sleep. Will update more tomorrow.

Mason is a bit cranky!

We have just spent the last few hours with Mason. He is quite cranky and you can tell he does not feel very good. They say he most likely has a major headache. We also found out he lost quite a lot of blood when they finished surgery, that is what took Dr. Kouretas a while longer to come talk to us. Probably because of the Lovenox shots(blood thinner) he has been on for that clot. Yay, no more shots, because of he disappearing act the clot has performed! Anyways he has had 2 blood transfusions and the bleeding has slowed way down. So now they are doing spontaneous trials to get him off the ventalator. Yes, already!! Much quicker than the first surgery. Hopefully he will do well and get it out. I think he will feel much better with out that down his throat. He gets quite agitated with us around. He knows we are standing there, even all the pain meds. I know he just wants us to snuggle him and Oh how i want too! maybe tomorrow they said! Wow that would be quick compared to last time, but certainly wonderful.

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.

Surgery is done!

Mason is doing well! At 12:oo Bonnie,came to tell us they were done operating and had just taken him off the heart, lung bypass machine . and that Dr kouretas would be out to talk to us in an hour when they were done in the operating room.

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

Surgery Day

So, we got here at 6am and then at 7am Dr. Kouretas came to visit us and explained what he planned to do during Mason's surgery. In addition to the normal Glenn procedure, connecting the Superior vena ceva to the pulmonary artery, he also plans to do some repair on his tricuspid valve because there is mild to moderate leakage. This is more than we had known about, but we know he will do what's best for our baby.

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

Tommorow is the big day.

We went to Primary's today for all of Mason's preop blood tests and x-rays. All went well so we returned home so Mason could sleep in his own bed for one more night before surgery. We have to have him back at the hospital by 6am tomorrow morning. His surgery is scheduled for 7:30am and will take 4-5 hours. They will be doing the Glenn, which is stage 2 of the Hypoplastic Left Heart palliation procedure. They say he will have a major headache for several days after, because he will have an increased blood flow to the upper half of his body, which he is not used to. Although, finally he will have pink cheeks! This will be a very long day, but we know little Mason is being watched over and will feel our Heavenly Father's love and comfort! Please continue to pray that all goes well. We have true faith in the power of prayer.

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

Heart Poem

I love this poem. It helps me put life into real perspective, especially Mason's. I read it to our family the day of Mason's blessing. Sorry if it makes you cry!

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

Mason is 6 months old!

(1) Mason sits in my bathroom sink while I get ready for the day.
(2)Mason is just a few days shy of 6 months old in this photo & loves to play w/ his hands.

Happy 6 months old b-day Mason ! (Last Friday , May 3oth, actually). Wow! alot has happened in the last six months. But, what we are most grateful for is.. each and everyday we have had with our little Mason and being able to watch him become such a special little person. He lights up when our other kids talk to him and play with him. He smiles at everyone. He is so irresistibly cute, so that's why he can get away with wanting to be held all the time! We love the sweetness he adds to our home. Mason we love you!

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.

So, summer vacation has started hear in Utah, and my sanity is being tested! But, I must say Mason loves having his brothers and sister around. It's just my energetic Ammon who is always trying to compete with Mason for my attention. Life would be quite dull without that though, right? And so here's the good news, we just hired a much needed "mother's helper"(we were unable to find someone to live in our basement for trade). She is a neighbor and my kids already love her. We are so excited, Thanx Sami for excepting the job! Thanx also to all those who are helping with our kids during the surgery week.