He is a 16 month old happy "half-hearted" baby with:
- 13 teeth ( at least double the teeth my other babies had at this age)
- 2 ear infections (poor little guy)
- 10 little purple finger nails
- 10 little purple toes
- 2 little cold & purple feet
- 1 big smile (when he can forget about his ears right now!)
- 2 lips that are a lovely shade of reddish-purple
- 16 lb's 8oz's on the scale
At 16 months he likes to:
- play peek-a-boo
- give "5" (if asked he will hit your open palm with his)
- scoot all over the house (preferably tile or wood over carpet 'cuz he can get more speed)
- scoot into the open pantry and see what surprises are within his reach
- taste anything he finds (not necessarily a germ friendly practice :)
- empty out drawers and cupboards he can reach from his 'scooting' position
- give kisses
- wave "bye bye"
- jump and spin around in his "johnny jumper"
- laugh at his sis & bros doing funny things (they love to jump & dance around to make him laugh)
- follow Mom or Dad (scooting) until he gets picked up
- be held and snuggled
- go outside
At 16 months he does not like:
- when Mom puts him down and walks away
- to lay on his tummy
- to be put in the crawling position (still prefers to scoot on bum)
- anyone in scrubs
- his own bed (or really going to sleep at all)
- any woman who doesn't look like Mom (I think he believes everyone else is a nurse!)
- anything taken away from him (he gets so upset that sometimes he starts to turn blue)
- when Ammon gets too close (quite often his loving cuddles are a bit rough for Mason)
What's been happening at our house:
So, life continues to be very busy keeping up with five children running in different directions all the time. From too much homework, to doctors appointments, to baseball tryouts, to soccer games, to meetings with teachers and therapists,to birthday parties, to griping at the kids to do chores, and then getting a nasty sore throat flu at our house last week, I definitely haven't had time to smell the flowers (it's snowing again anyways), take more than a 2 minute shower, and for sure not sit down at the computer to blog!!
Mason
Little Mason has been sick w/a yucky cold, sore throat and double ear infections. He has been on two different antibiotics to try and clear them up. He needs to have new tubes put in, because the ones he had placed a year ago have worked their way out of the right spot in the ear drum (which happens normally with growth). My kids just have bad genetics when it comes to ear infections. I am trying to coordinate his tube surgery to be done at the same time he is sedated for his echo next week on April 9th. Hopefully that will work out.
As for his heart, he will have his echo next week which should give us some answers about how he is really doing. Honestly, I have anxiety about his echo and the truth about his heart's condition. The last few months his little lips, fingertips, and toes have become more and more purple. Also, the last 6 weeks or so he has gotten a lot more exhausted when scooting around and also when eating (especially nursing....yes call me crazy 'cuz he does have 13 teeth). He starts breathing really hard and then he will just stop what he is doing for a while to take a breather, or doze off while feeding for a few minutes, because apparently he uses up his energy. His sats also have been low to mid 70's which is still okay, but since his Glenn surgery he had been low to mid 80's. If he were to be in need of his 3rd surgery already, he is too tiny. They want him to weigh between 25 and 30 lb's !! Well, with all my speculating I just begin to worry myself, so I best wait 'till next week for the echo.
The good news is that we have seen no recurrence of his arrhythmias so far. We have done two 24 halter monitors since the cardiologists took him off his arrhythmia meds that have shown no arrhythmias. Thank goodness! But, I will say my hope of him sleeping better off the meds has not come true....I think he just has a bad habit now of waking up every hour or two! Someday he will learn to sleep all night long and I will wake up and think I am dreaming. For now, one day at a time, no more like half an hour at a time is how we operate at our house:)
Some Humor for a Heart Mom:
At one of our doctor appointments these last two weeks, a new nurse at our pediatrician checked us in. While checking Mason's O2 sats I noticed her begin to get a really scared, frantic look on her face as her eyes went from the pulse ox monitor reading 72 to his purple lips then to his little purple finger tips. I'm pretty certain she was about to yell "call 911" when I said, "oh, I am sorry, 72 is okay for him. And this shade of purple is his normal lately." She sighed a big sigh of relief. I felt bad that I forgot to warn her, like I normally do to a nurse that doesn't know us. But it did give me a silent giggle moment, even though it gave her quite a scare!
I will update after Mason's echo next week.
3 comments:
Your blog brought back so many memories. My son is now 11 and awaiting the Fontan. We have been so blessed to have these years with our miracle guy. A few months ago he got poked in the eye. We went to the emergency room and the nurse freaked out when his sats were 75. I said, "That is pretty good for him." She started him on O2. I told her 1 liter was o.k. but to go any higher she had to call Primary. She started the O2 and went and got the EMTs. The EMT looked in the room and asked,"Is he a Primary heart kid?" I said yes and he rolled his eyes at the nurse and told her to take the O2 off. I have a ton of "funny" stories about the sats! Hang in there and enjoy every minute.
I read your blog from time to time. My son Daniel is 21 months old, HLHS with a Fontan scheduled in June (right after he turns two!) and he just had his LPA ballooned during a cath and that raised his sats from mid-70s to around 80. His little fingers aren't so blue now. He's also the youngest of five children, carepage juniorsheart if you're interested, and we live in PA although we're originally from your area of the country.
Thanks for the laugh. I remember the first time I took Dan to the pediatrician with temporarily lower sats due to a bad cold. The pediatrician was freaking out and I had to tell him, no I won't take Dan to the emergency room with sats in the low 70s!!! He called the cardiologist who told him I didn't have to take Dan to the ER. After I got home, the pediatrician called and again encouraged me to take Dan into the ER. I was like, cool it, man! The baby's okay!
Best wishes with your beautiful little boy.
Thanks you so much. It is so nice to know we are not alone in this. Where will your son have the Fontan? We are floundering because the head of heart surgery at Pri4mary Childrens Medical has terminal cancer. He is the only one who has performed surgery on our son. We are looking at all options. My son has had 2 heart caths in the past 4 weeks.The first was to prepare for the Fontan. The second is to help him get by until the Fontan. They ballooned an artery and it has bumped him for 65-80 His finally has pink lips and semi pink fingernails and toes. May the Lord bless you in all these trials!
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