Thursday, April 30, 2009

I'm 17 Months Old Today and Sick Again!!

Poor little Mason is not feeling well! He has a new fever and a nasty cough with wheezing and some labored breathing at times (especially at night!) In fact last night I debated on taking him to Primary's emergency room. He could not sleep at all because his cough was so bad and thus causing his little body to work pretty hard! We had come down slowly over the last week on his O2 to about 1 1l2 liters but last night had to go back up to 2 liters. I have increased his breathing treatments to every 4 hours (advice from my friend here in highland who is a PICU cardiac nurse...... thank-you for the house call, because I'd already been to our pediatrician enough this week!) and that does seem to be helping. We are not sure if this is from the pneumonia or something new.

Why had we been to the pediatrician already enough this week? My three oldest kiddos have taking turns w/ strep throat this week and I had taken Mason in for his cough earlier in the week as well. And actually his lungs sounded okay then, but now they sound pretty bad! Why we've got the sickies again is beyond me, because we are so good about hand washing and sanitizing!!! My hope right now is that Mason can get better at home and not need a "week-end getaway at the Hotel on the Hill" again. I know this respiratory stiff is taxing on his heart right now so I am praying he can kick it soon.

His new heart meds do seem to be helping his heart function, because his purple lips and finger tips don't look so purple and his overall coloring looks better. All though I think his lower heart function is definitely affecting his immune system, making it even harder now for him to fight infections off. In fact after his echo, 3 weeks ago Dr. Saarel advised us to be even more careful now with Mason, not going in crowds, being around other children, etc... because of his heart condition at this time. And we thought when May came we would start venturing out a little, family gatherings w/ cousins...etc....but not now!!

I am proud of Mason though, he has gotten used to the Oxygen and rarely pulls the cannula out of his nose now. Occasionally I'll catch him w/it down in his mouth chewing on it though! it is on a 50 ft cord hooked up to the O2 concentrator, so he crawls all over (well except for these last few days he only wants to be held) the house until he has wrapped himself up into a big tangle and then begins to cry cuz the cord and cannula are squeezing his little face. He does love to go for walks outside, so I just stick a portable tank in the wagon or stroller and he is happy! But on this much Oxygen the little tanks empty out real fast!

Next Thursday he has another sedated echo and an appointment w/ cardiology. We are praying the echo shows improved heart function. I will update after the echo. Also I have some cute pictures from this last month, but my computer still won't let me load them onto blogger so I will have to do it later with Mark's computer. I better go I have a baptism to plan, Preston is getting baptized tomorrow (It is noon on Friday now, I never finished the post yesterday) Life is Busy!

Here is my quote of the week...."It's not the load that breaks you down, it's the way you carry it" by: Lena Horne I came across this quote last week and I needed to hear it for
sure :-)

Saturday, April 25, 2009

Baby Grant Needs Your Prayers

While we were up at Primary Children's this last week we met a very sweet little baby and his amazing special parents. This is Baby Grant and he has HLHS like Mason with additional special needs in his heart and other organs. He has had a rough 5 weeks of life and last night had a scary episode of "code blue" which sent him back into the PICU. Oh, how I feel the pain of his parents having seen Mason "CODE" right in front of my eyes more than once! And the emotional roller coaster of trying to get home and then having set backs is so tough! Grant is a strong fighter, but at this time is in need of some extra prayers.


Mason says " keep fighting Grant!! You can do it. We are praying for you."

To read about Grant's amazing journey click on his name in my list of "heart buddies" to the right.

******Mason is loving being back home. Still needing lots of O2 but he's happy and still scooting all over the house.******

Thursday, April 23, 2009

We Made it Home!!

Yesterday afternoon I was able to bring Mason home. He is feeling much better, but is still on 2 liters of O2. That's a lot for such a little guy. I will slowly try to wean him back down to 1/2 liter. He is so happy to be back home in his comfort zone and to play with the kids.

A quick thank you to all of you for your prayers and support, for the Grandparents and Aunts and Uncles who came to visit, to Kaitlin and her friend Megan for Making Mason a poster for his hospital room, for our Bishop who came to check on us, to Mark and Braiden who came up to let me go for a run, to my sweet neighbor Lolly who brought us some yummy healthy snacks, and to all the help at home with kids and more meals!!

I will post more later, but I have a lot of catching up to do here at home after being away for a week!

Tuesday, April 21, 2009

Still Here

Okay, so my thought of a 2 day stay at the "Hotel on the Hill" has so far become a 6 day stay!! I have wanted to update the blog more often, but I don't have a lap top and it is hard to get out of Mason's room to use one of the hospital computers.

For the most part Mason is doing much better today. Yesterday in the morning he had some issues w/ some low heart rates and then yesterday afternoon his sats began to drop and had to be bumped up to 2 liters of O2. Every medical team from cardiology to pulminolgy to the general pediatrics team had to come by to asses Mason, give their opinion,draw more blood for different tests, and then consult w/ each other. In the long run there were really no answers and I did not feel good about any one's opinions until Dr. Saarel, mason's Cardiologist came up to visit today. She knows him best. She feels that the low heart rates yesterday as well as the continued need of more 02 is most likely due to him having very Little reserve to handle his pneumonia. She though he looked good today though.

The good news is each day his CRP (level of infection) has continued to drop and is almost to normal range. Today it was 1.5 and normal is less than 1. Also is chest x-rays showed improvement and his chest ultrasound did not show any fluid outside of the lung like they had thought. They did add some diuretic today to help get rid of any fluid in his lungs. The plan is to switch to oral antibiotics and maybe go home tomorrow! Yeah!

Thank you to all the help at home with our other kiddos, to the meals, to my Dear friend Jean who brought Mason and I lunch yesterday, to our visitors, for all the e-mails, text messages, comments, phone messages, and to Mark for bringing up the kiddos to visit us! Mason just lights up to see his family walk in his room.

Sunday, April 19, 2009

Still Fevering at the Hotel

We thought maybe we would have been able to go home today, but Mason's Fever went back up to 102.5 last night and again today to 102.3. So this means he needs to stay on the IV antibiotics a little bit longer. (I hope only a little bit) With his lower heart function on top of only working with just one ventricle it is harder for him to kick the pneumonia. If he has any more fevers they plan to do an ultrasound tomorrow get a better look at the fluid in and around his lungs.

Yesterday his chest x-ray looked the same. Which the docs said was good because a lot of time time the pneumonia gets worse before it gets better. So its better to be the same than worse! His lab work showed that his CRP level (a measure of infection and inflammation in the body) had dropped from 5.4 on Thursday night to 4.9 yesterday. Which is still elevated from where it should be but at least it is dropping. They also too a BNP level (which is a way to measure heart failure, but some cardiologists don't agree with how accurate it is) and it is 628. The normal range is 0-100 and even with his heart disease it should be below 100. So I asked at what point do they hospitalize for heart failure and I was told it varies from case to case, but usually a child that needs to be hospitalized and on IV meds for heart failure would have a BNP around 2000 or 3000. That made me feel better.

Got to go Mason needs me. Thank you for all your prayers!!

Saturday, April 18, 2009

Fevers, Pneumonia, and A Weekend Getaway

Little Mason spiked some fevers this week. We went to the pediatrician on Wednesday and it seemed to be something viral because his lungs sounded great. But Thursday, his fever went higher, up to 104.4, so that evening I took him to the AF Hospital for some chest x-rays to make sure it wasn't a lung issue. Sure enough I got a phone call about an hour later that he has pneumonia and some possible effusion (fluid outside the lung), Not good news!

So especially with the condition of his heart right now our pediatrician and cardiologist wanted him to be admitted to Primary's. My kids had been begging to go somewhere for Spring Break this week, but I don't think this was the "getaway" they meant! In fact, only Mason and I packed for our weekend getaway up to the "Hotel on the Hill" and the other 4 kiddos are having a "Daddy Day Camp" at home. Anyways, we arrived at Primary's emergency room at 11pm Thursday and after drawing labs and placing an IV for meds we got to our room at 4:30 am. It was a long eventful night:)

Mason does not like it hear because he is scared of anyone in scrubs! They upped his O2 to 1 liter and are giving him 2 very strong IV antibiotics. We hope his fevers will completely stop and his x-rays today will show improvement so that this will not be a long stay. I admit it is scary for me that he has pneumonia especially with the results of his echo last week, but I pray that our little Miracle Mason will fight this one off!

Thank you for your prayers, phone messages and text messages with words of concern and birthday wishes (it was my b-day yesterday). They are greatly appreciated

I will update more later.

Sunday, April 12, 2009

Happy Easter

(There is never one good one of everybody!
Click on the picture to see a close-up.)

Happy Easter from our family to yours! My kids are grateful for the Easter Bunny and all the treats. But more importantly, we are so grateful for this time of year to reflect upon the sacrifice and resurrection of our Savior Jesus Christ. Thank you for all your love and support.

Happy Spring!

Love, The Stricklands

Saturday, April 11, 2009

The Return of the Concentrator

This is our newest piece of furniture! A beautiful, noisy oxygen concentrator. We all ready got rid of one just like it in December....but Mason's cardiologist called Friday morning(yesterday) and said she wants Mason on oxygen 24/7 to lessen the work load on his heart right now. Within a few hours our new piece of furniture arrived! The only one excited about this was Ammon. To him it is a big new fun toy to turn off and on, to turn the level up and down, and to listen to it beep at him when he disconnects the cord.

Mason wasn't and still isn't happy about this! He cries when I try to put the cannula in his nose. In fact, he screams and yanks it off. He doesn't like the little stickers on his face either which are supposed to help him keep it on . He tries to tear the stickers off! I have yet to succeed! Any suggestions??? The problem is he has never needed oxygen for an extended period of time. We last used it in the fall when he had some bad coughs for a few days at a time. But that was at least 6 months ago. He is not used to it at all! I know he needs it, but how do I get him to keep it on? Poor little guy. I wish he understood it would help him feel better.

Thursday, April 9, 2009

A Long, Not So Good Day

Mason and I left the house at 5:15am this morning to head for Primary Children's. We had a 6am check-in. But of course the anesthesiologist didn't come and take him until 8am! Originally today had been scheduled just for his sedated echo, but I was able to get Mason's ENT, Dr. Park, and his cardiologist, Dr. Saarel, to coordinate so that he could get new tubes placed in his ears under the same sedation as well. It was great that they were able to work that out for us. Cardiology took their portable ultrasound equipment up to the OR to do the echo before he had his ear tubes replaced.

The good news of the day was him getting his ear infections taken care of again. And when you've been through everything Mason's been through that was a breeze for him.

After waiting a couple hours in post-op for him to recover from his sedation we went down to cardiology for his appointment with Dr. Saarel. This is when our day became a "not so good day". I was hoping to hear a reason for his "blueness" and his heavy breathing etc... but not the reason I was given!! His echo not only showed moderate to sever leakage in his tricuspid valve but also much lower function in his heart. The function is basically how well the heart squeezes. So this is not good! Mason has always had pretty good function. This news was unexpected. But as I always say with Mason "always expect the unexpected"!

So what does this mean? When the heart is not squeezing well it is considered to be going into heart failure. The doctor prescribed 2 new medications for Mason to help the function as well as the overload on his tricuspid valve. Our hope is that this will improve his function well enough to be a candidate for the third surgery "The Fontan" down the road. As of right now with his poor heart function he would not be able to go on to the third stage. (Even if we chub him up.) The plan is to do another echo in 6 weeks to re-evaluate. If it has not improved there is one more medication to try (which usually doesn't help much for HLHS kiddos).

Then if not, then what? They would turn us over to the Transplant Team!!! That "T" word has worried me since he was diagnosed 16 months ago. I just never thought we would have to turn to that option. I know I have seen miracles with babies (& children & adults) lives being saved by transplant especially since we became involved in the "Heart World"! But I also have seen sad stories of those waiting for transplant (or getting a bad transplant ) and their time runs out!! I will just pray that my little Mason will continue to be one of the happy miracle stories.

Having said that, I know Heavenly Father has a plan for my Mason! I just hope and pray that plan leaves him hear with us for many more birthdays to come. Please keep him in your thoughts and prayers at this time.

Just a little sweet story from today: I had dropped Mason prescriptions off at Primary's pharmacy and went up to the third floor to find a quiet corner to feed him while we waited.
As I sat there the news about his echo began to really hit me and tears began to roll down my face. Then a lady came up to me, put her arm around me and said "I am glad to see there are other sad moms here too. I thought you might need a hug". As I looked up to say"thanks" I saw that she was pushing a darling little bald headed girl about 5 years old around in a wheel chair. I assume she is a cancer patient. We both said good luck to each other and she continued on her way, Today, I am grateful for that sweet stranger who reached out to me in my time of need! I hope I can pay it forward someday!

Friday, April 3, 2009

One Year Ago Today

A year ago today Mason took his 2nd Life Flight trip to Primary Children's. I called 911 after talking with a nurse from Cardiology. I had called there because I knew something was wrong. His breathing was really different so I had checked his stats and they were about 60 and his heart rate was about 180-210. He also would just fall asleep in my arms after crying for a couple minutes. (This had happened through out the morning). The nurse told me to bring him in and at that moment a very strong feeling came across me that I could not drive him there myself. I was too scared something bad could happen to my little baby on the way there.

So I hung up and called 911! It was a good thing I had called 911, because when the Paramedics arrived he had gone into severe tachycardia. His heart rate was going up to 270 (way too high)! He was very pale and lethargic. The paramedic team decided with Mason's history that he should be Life Flighted to Primary's instead of being taken by ambulance.

With that decision I realized Mason's condition was worse than I thought. Then to top off the excitement of the firetrucks and paramedics at our house, that day, the Life Flight helicopter landed right on our street, almost in front of our house. Anyone home in the neighborhood that Thursday morning gathered on the drive way across from us and watched the paramedics and the nurses rush Mason off into the Life Flight. An unforgettable day in our neighborhood for sure!! And another unforgettable 45 min. drive to Primary's to meet up with my little Mason. Fortunately, after a week stay in the PICU everything turned out okay and we brought Mason back home.

Though I must say, being home tonight as a family this April 3 is much better than where we were a year ago! There is something about Mason and the 3rd day of the month, His first Life Flight trip was on Dec 3, 2007 and then his second was April 3 2008! Hopefully these flights are all in our past now. We prefer to watch them fly over head than to have them land on our street.