Thursday, August 25, 2011
I thought I should post for any of you who remembered from my last post that Mason was scheduled today for a cath/biopsy and coronary artery MRI today that plans changed. I came down with an awful stomach flu (fever, headache, vomiting etc...) on Tuesday afternoon. I hoped and prayed it was just a 12 -24 bug and that I could get over it by today so that I could still take Mason in for his procedure, but last night at 8 pm when I was still feeling crummy and hadn't kept anything down in over 30 hours I decided I better call Primary's and cancel! I'm sure they weren't happy with me that I canceled so late, because it messes up their schedules for the cath lab and MRI room. But, I was certain I was going to kick it in time to take Mason still. It is very difficult to get these two procedures scheduled back to back so I just hated to cancel!!!
I am feeling a little better today, but not well enough to have taken Mason in at 6am this morning and stayed at Primary's all day. Besides I certainly wouldn't want to spread this around!!! Then to top it off, Ammon woke up today with a fever so I kept him home from school. That would have caused a definite problem if I had not canceled Mason's appointment as well. I guess just when I think life is becoming a little more normal and predictable the unexpected happens!!
When I talked to Michelle from the transplant team last night she said they would work on getting Mason re-scheduled ASAP and if it doesn't get scheduled for next week then I will need to take Mason into Thursday's transplant clinic for a doctor visit and blood draw. He was supposed to have labs drawn today to check several things, but especially his Prograf level because it has been 3 weeks since his last blood draw to check his level. Mason seems to be doing fantastic, but without his Prograf level being high enough sometimes that mean old rejection can be sneaky and inconspicuous and show no signs ........ so I pray Mason's heart is doing well with no trouble from that rejection enemy! Also I was very much so looking forward to today's biopsy, good clean results, and then the final taper to get Mason off of his steroids. That being said I hope they can get us re-scheduled sooner than later!!
Please pray Mason does not get this awful flu that has done a number on me! Mom's are not supposed to get sick, but I can kick this better than an immune compromised transplant patient any day! And, Mason definitely would have trouble staying above water with this terrible bug!!!
Our kiddos all started school this week so I will post some cute 'first day of school' pictures soon. Mason certainly has missed having them home to play with, but he's also been busy with physical therapy and speech (that we are now getting through Intermountain Home Health Care through our insurance, and his new therapists are FABULOUS).
Kaitlin did survive her babysitting adventure back in New Hampshire and returned home safely! She at times watched 9 or 10 kids by herself and I was told she did an amazing job! I'm so proud of her. She also had A LOT of fun playing on the lake and learning to wake surf!!!
I'm off to nap with Mason and Ammon before the other kiddos come home from school, but I will post again soon.
Monday, August 8, 2011
I remember when I was pregnant with Preston (my second kiddo) ten years ago, I wondered and worried how with two kiddos (ha ha...... now I have 5!!! 2 was a piece of cake!!!) I would balance housework and playtime. A friend gave me a poem that I loved. I promised myself I would read it often and live by it, for I did not want to lose any precious time with my babies!
"THE CLEANING AND SCRUBBING WILL WAIT TILL TOMORROW,
FOR CHILDREN GROW UP, AS I'VE LEARNED TO MY SORROW.
SO QUIET DOWN, COBWEBS. DUST GO TO SLEEP.
I'M ROCKING MY BABY AND BABIES DON'T KEEP."
~Ruth Hulburt Hamilton
I’d finger paint more, and point fingers less.
I’d do less correcting and more connecting.
I’d take my eyes off my watch and watch with my eyes.
I would care to know less, and know to care more.
I’d take more hikes and fly more kites.
I’d stop playing serious, and seriously play.
I’d run through more fields and gaze at more stars.
I’d do more hugging, and less tugging.
I would be firm less often, and affirm much more.
I’d build self-esteem first, and the house later.
I’d teach less about the love of power, and more about the power of love."
- Eating? not so much since his last hospital stay. Not sure why, except the docs say hospital stays in and of themselves can cause loss of appetite for a while after. And his reflux seems to have worsened lately too (thus yucky puking).
- Sleeping? slightly better since we switched his steroids to once aday (and its a pretty low dose as well), but not great yet! But, I'll take 4 hours of sleep over 3! Thank goodness he will still nap, well as long as I nap with him! (spoiled? maybe! But I need the nap too!)
- Walking? Not yet, BUT definetly getting stronger! We recently learned that prolonged use of prednisilone (Mason's steroid) can cause muscle weakness and discomfort. Not sure why that wasn't something I was informed about in all of my post transplant training at Stanford (or maybe I was but was so overwhelmed with all the new medicine information that I just don't remember).....but, it certainly makes a lot of sense now why sweet little Mason is not walking yet!!! He has been on steroids much much longer and at exceptionally higher doses than the average transplant patient because of his severe rejection in the beginning and his history of high antibodies. And the longer you are on steroids, the longer the weaning process! Mason hopefully will be completely off by the end of September. This will depend on the biopsy results of his upcoming cath on August 25. Although, in the last month as Mason has been on his much lower dose of steroids we have seen Mason's stregnth coming back by LEAPS and BOUNDS. He's climbing the stairs again and fast, cruising furniture, pulling to a stand with confidence and much less shakey legs, and riding his bike all over the place (he just pushes off the ground with his feet, doesn't pedal yet).
- Talking? More and more everyday. Mason certainly talks more around our little family than he does around anyone else, but as he warms up to others he'll start to hold his own conversations with them too. He's in the stage that we really have to be careful about what we say cuz he'll copy almost anything he hears. One day recently after hearing 2 of his older brother's having a angry conversation like this, "shut up!", "no, you shut up", "just shut up", "no, you shut up"...... (which BTW, I dont like this word and don't allow it in my home, but I wasn't in the room at the time), Mason then gained a new favorite word! From the mouth of babes it sounds like this, "UT UP!!!" And now when Mason's mad or just wants a reaction from someone he continues to say that ugly (but, funny when he says it) word. I've tried to teach him "zip it!" instead, which from him sounds like this "IP IT!" and he will say this also, but he doesn't think it's quite as fun to say as "UT UP!" . The other thing he says all the time is "In a minute Mom!" This is ususally when I need to change his diaper, give him meds, do a g-tube feed, or I've told him it's time to come inside. At first I couldn't figure out where he learned it, but I soon realized I say that to him and my other kiddos ALL the time. ie: At night after I've put him in his bed, "I'll say i'm going to get my jammies on and I'll be right back", and after 30 seconds he begins asking, "Are you coming mom?" (which he will usually repeat every minute or two until I do come back and lay by him).......and guess what is usually my response? "In a minute." Hmmm? wonder where he learned that!
- Needing O2's? No! Hooray! Mason is satting between 94-97% day and night on room air again. It is so nice to not have that constant noise of the oxygen concentrator in our home once again. It really had only been two weeks after his May hospital stay and then two weeks after his June hospital stay, so I'm not sure how we dealt with that noise for a whole year prior to going to Stanford for his new heart. I guess we just learned to tune it out and eventually just got used to it!
- Blood pressure issues? Actually for the first time since transplant he is off ALL of his blood pressure meds (because his steroids made him very hypertensive). He was on three untill April, two until his hospital stay in June, and then in July about two weeks after coming home again his blood pressure began to be too low so the docs and I decided to take him completely off. Since transplant we (both of his transplant teams and I) really weren't sure if he'd ever be able to completely come off his hypertensive meds, so this has been very happy news!
"When I look at a patch of dandelions, I see a bunch of weeds that are going to take over my yard. My kids see flowers for Mom and blowing white fluff they can wish on.
When I feel the wind on my face, I brace myself against it. I feel it messing up my hair and pulling me back when I walk. My kids close their eyes, spread their arms and fly with it, until they fall to the ground laughing.
When I pray, I say “thee” and “thou” and “grant me this”, “give me that”. My kids say, “Hi God, thanks for my toys and my friends. Please keep the bad dreams away tonight. Sorry, I don’t want to go to Heaven yet. I would miss Mommy and Daddy.”
When I see a mud puddle, I step around it. I see muddy shoes and dirty carpets. My kids sit in it. They see dams to build, rivers to cross, and worms to play with.
I wonder if we are given kids to teach or to learn from? No wonder God loves the little children!! Enjoy the little things in life, for one day you may look back and realize they were big things."
~by Kelley Small, Publisher of Today’s Parent