California McMillans

Can you believe tomorrow is March...CRAZY!!! That means I am having a baby this month.  Did you even know I was pregnant?  Don't worry if you didn't. I have forgotten at times.  Tyler has been more than a handful since we got back from the hospital so I have put having a baby on emotional hold trying to resolve his issues. I think I am almost at the point of realizing that I can do it.  Newborns sleep a ton and never argue.  They conveniently fit in a little pouch and will cuddle all day long.  Not looking forward to getting up at night and a ton of diaper changes.  But I am going to have pants that don't sag off my butt in a couple of weeks and am super duper excited about the summer.  Hoping Kira will be a wonderful big sister and a new baby will bring so much love into our home.  I can get my kidney stones crushed and won't have chronic pain.  So it is all going to work out. I am almost certain it is a little boy.  I have not felt sick like I was with Kira.  I

What have we been up to?  Well, Tyler has been a challenging case.  We aren't sure what to do with him.  He screams quite a bit and doesn't respond to logic or threats or even love.  I pretty much just put in my ear plugs and have Heidi deal with him.  When he's not screaming, he can be quite pleasant.  He is eating a little more and has recently discovered cinnamon toast.  He's still afraid to go to certain places, like church.  He threw a big tantrum this morning but seemed to do fine through all three hours.   He is afraid to go outside but I was able to coax him into riding Bessie with me.  He enjoyed that.  Kira has been the most resilient to the stresses we've been having.  She is talking quite a bit and uses way more Spanish words than the boys ever did.  She is obsessed with shoes and enjoys dressing herself.  This week she potty trained herself.  She goes in her little plastic toilet, then picks it up and dumps it in the big toilet.  She is t

Often we go through life praying for guidance and solutions to daily needs both large and small.  I don't have a doubt that the Lord answers and hears each and every prayer.  Some are answered in ways that we plead for.  Others come in unexpected or unwanted ways simply because the Lord has a greater plan.  While others come and go unrecognized by our mortal eyes. <br> Every time I am in the hospital with Tyler, God's hand becomes more and more visible.  Perhaps it is because it is so evident that we don't control everything in medicine or life.  We can take care of our bodies and get medical help, but at the end of the day, the unexplainable of medicine can only be explained by a higher Being and greater plan. <br> Being in a cardiac ICU is always a spiritual experience.  I know that these kids are surrounded by ministering angels.  You feel for the parents and loved ones that are hoping and praying for their child's recovery.  I have been blessed to m

Many of you know that Tyler's surgery was postponed twice.  In August, the surgeon wanted to increase his meds to see if there would be an improvement in his heart function and AV valve.  The meds  greatly improved his heart function and he was scheduled for surgery in November. Everything looked great, however, surgery was again postponed.  The surgeon was not happy with how anesthesia dealt with a case and was only willing to work with certain anesthesiologists who were experts in cardiac anesthesia.  While some suggested we should be annoyed or upset at the inconvenience of postponing surgery again, Danny and I were grateful for a surgeon who was standing up for what was best for his kids.  We felt like it was in the Lord's hands and for some reason, that we could not explain, surgery was postponed. So Tyler went in for surgery in January with the best cardiac anesthesiologist.  We can now see why that was so important for Tyler and are SOO grateful that our surgeon post

Grammy and Grampy came to California while Tyler was in the hospital.  Grampy brought Bessie and Scott got quite a kick out of her.  Tyler is doing well physically but seems to suffer from some post-traumatic stress disorder, which is understandable.  He is afraid to leave the house. Tyler had his cardiology visit with Dr. Cooper and his sats were not stellar.  The MD's are going to close the fenestration via catheterization in the middle of March and that should improve the numbers.  Otherwise, he has been sleeping through the night and his incisions seem to be healing well.  Kira and Heidi were sick, Scott is just getting over a two week bout of dry cough, and I'm hanging in there.

Tyler came home exactly one week after his Fontan.  Truly a miracle.  We are so grateful!  He will go back in about 6-8 weeks to close up his fenestration.  I will post more tomorrow when I am not so tired.

Tyler continues to progress.  He has one IV left and we are hoping to go home in the next day or so, but we shall see. He is starting to get agitated with everything and everyone.  He did great for the first week and after that has had enough.  I remember reading on so many blogs about how their kiddos do fine emotionally for the beginning of the Fontan stay and all of a sudden hit some major mental hurdles.  I am trying to be patient.  Having a hard time knowing how firm or understanding I should be with his meltdowns.  Tyring my best to just reassure him that everything will be alright and trying to have him communicate nicely what his needs are.  I have been so surprised how great he has communicated his feelings and needs.  Even if it is yelling at the top of his lungs that he doesn't want another IV or doesn't want to watch TV at least he is communicating. He woke up, got blood drawn, an X-ray taken and things look good.  His ventricular function is alright, his effusion

Tyler was watching Wild Kratts this morning.  In order to give Heidi a break, I climbed into bed with Tyler and watched TV for about twenty minutes.  Quietly, Tyler said, "Daddy, I want you to get out of my bed." "You want me to go?" "Yes." So, I left him watching Arthur while Heidi slept. I slept in 6 long, and at 3:42 I woke up to a strange smell.  Then, the fire alarm went off.  I put on my shoes, got my camera, and ran out the emergency exit.  The fire doors were closed and I didn't know how to exit the campus.  Finally, I saw one nurse outside.  Don't they make everyone exit the building during a fire alarm?  Apparently not.  The fire trucks showed up and the security guards said, "Some truck was idling into the air intake.  We're just waiting for clearance from the fire department."  Minutes later, the PA announcer said, "Code red is cleared."  I didn't fall back asleep until 5:42 and then at 5:59 I w

Tyler was smiling today, though this picture doesn't capture it.  I rode the VFR to SF tonight and Janet greeted me as she was leaving her shift.  She said, "Tyler has quite a set of lungs."  I was like, "You guys need to wear ear plugs.  But at least it's a sign that he's doing well when he complains." They removed his chest tubes, foot IV, pacemaker leads, and oxygen cannula.  All he has is one IV in his wrist and it looks like we're at the beginning of the end.  Go, Mr. T!