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September 22 -over 4 weeks post op but still going strong!!

posted Sep 22, 2010, 8:07 PM by Sean Molby

Pretty eventful week this week. We have had some major ups and downs and thankfully right now we are at a major UP time…


For the last two days T has managed to maintain his O2 saturation levels in the mid 70s to low 80s with only being on between ¼ - ½ liter of oxygen. This is a huge jump from being on 2 liters and barely being able to keep in the mid 70s. AND without having to be deep suctioned!! We are doing a nasal aspirate suctioning but it is not as invasive so it is much better for Tristan and the big plus is that is what the docs are comfortable sending home with us.


They were planning on doing a cath procedure tomorrow for Tristan, and they still may, but we are waiting on a new echocardiogram to be done to see if they can try and get another look at the flow through his pulmonary arteries…if the flow is insufficient than they may have to balloon them open or place coils in some of his collateral veins- it is really hard to understand, so it is even harder for me to explain- this is the 2nd possibility of what could have been causing his low saturation levels…BUT since his O2 sats have jumped up ( and I have been telling everyone that it is ALL thanks to you guys and the prayers that are being said) they are back to thinking that maybe it was just a cold…soooooooo not sure what will happen tomorrow.


The only other problem Tristan has been having is he has been vomiting lately, we are all in agreement that it is most likely do to the secretions and mucus that he has backed up in his nose and throat and that when he swallows or coughs it is making him gag and then vomit. I would normally be upset over this but I think it may be helping him clear out all of that junk in the back of his throat, he has not vomited since early this morning but there have been several close calls. Even so, he is still doing well and sounds so much better than he did late last week. They have done another x-ray of his lungs and stuff and there is no sign of pneumonia-which is often a huge risks with heart patients- and his lungs still look clear! YEAH!!!


He had his first physical therapy session Saturday and his second yesterday (since being in the hospital) and it went AWESOME!! She was very impressed with his enthusiasm to work and how advance his is for being a heart kiddo and one post op. They worked on him rolling over, which he seems to some how have learned all on his own- who knew- and then getting him to sit up straighter and lift his head up instead of slumping over like he has been. Then they worked on feet to hands and feet to mouth, simple things that he just has to learn all over again. She was very optimistic and is excited to see how much more she can get him to do before he gets released. He will get PT 2-3 times per week till released and then we will go back to going through First Steps.


He had occupational therapy today. That didn’t go over as well but to be fair to T they were rushing it cause he was supposed to get his echo done and they needed to get him in like 5 minutes- the echo ended up getting postponed till tomorrow because they have specific people they want doing this one but OT had left before we found that out- anyways he responded well but he has lost a lot of his sucking instinct over the last month. She explained that it is because since his intubation –and the fact that he was reintubated 3x that he is now associating mouth stimulation with what they call “BAD” touch so to help him with that we have to assure him that sucking on the pacifiers or hands or whatever are “GOOD” touches. So every feeding we are suppose to work with him with “good touches” and then OT will come everyday till release and work with him a little more in depth. Then after discharge we will again go back to First Steps…so get ready Nicole, Tristan wants to show you what he can do J !!!


Not to much else that I can think of. …… well, I do have a question for you all only because I have had some mixed comments… this may sound stupid but I was curious as to if everyone prefers to have daily updates, even if there is not much to update, or if you prefer the longer 1-2x a week ones. For the most part it doesn’t make much of a difference to me. The longer ones take me a couple hours to type up and eventually post the short ones not so long but daily. It may sound silly to some but I write these updates not only for my own sanity-they help me process it all in a way- but also for everyone to know what is going on. You can either reply in the feedback section of T’s website or tell me on facebook. I just would like a majority consensus. No biggie if you don’t say. I am gonna go with majority rules on this one so….


Thanks again for all the prayers. And for those that also prayed for Quentin thank you. He successfully had his Glen today and is doing well. He does have a higher blood pressure than what they would like so they are keeping him on the ventilator but he has opened his eyes and his mommy, Naomi, got to see them-which is a HUGE thing- at least it was for me.


Please keep both these boys in your prayers. And yet again, and I will keep saying this,



REMEMBER cherish what’s important!!

 Time goes by so quickly- even when you feel like time is standing still; it has a way of passing you by   


To end this update I got this little story via email and I felt it to be too good not to share… love you all, stay safe, hug your loved ones ~Christy

The Mayonnaise Jar

When things in your life seem almost too much to handle, when 24 hours in a day is not enough;
remember the mayonnaise jar and 2 cups of coffee.

A professor stood before his philosophy class
and had some items in front of him.

When the class began, wordlessly,
he picked up a very large and empty mayonnaise jar
and started to fill it with golf balls..
He then asked the students if the jar was full.
They agreed that it was.

The professor then picked up a box of pebbles and poured
it into the jar. He shook the jar lightly.
The pebbles rolled into the open areas between the golf balls.

He then asked the students again
if the jar was full. They agreed it was.
The professor next picked up a box of sand
and poured it into the jar. Of course, the sand filled up everything else
He asked once more if the jar was full. The students responded
With an unanimous 'yes.'

The professor then produced two cups of coffee from under the table
and poured the entire contents into the jar, effectively
filling the empty space between the sand.
The students laughed.

'Now,' said the professor, as the laughter subsided,
'I want you to recognize that this jar represents your life.

The golf balls are the important things - God, family,
children, health, friends, and favorite passions
Things that if everything else was lost
and only they remained, your life would still be full.

The pebbles are the things that matter like your job, house, and car..

The sand is everything else --

The small stuff.

'If you put the sand into the jar first,' he continued,
'there is no room for the pebbles or the golf balls.
The same goes for life.

If you spend all your time and energy on the small stuff,
You will never have room for the things that are
important to you.

So... Pay attention to the things that are critical to your happiness.
Play with your children.
Take time to get medical checkups.
Take your partner out to dinner.
There will always be time to clean the house and fix the dripping tap.

'Take care of the golf balls first --

The things that really matter.

Set your priorities.


 The rest is just sand.'

One of the students raised her hand and inquired what the coffee represented.

The professor smiled. 'I'm glad you asked'.

It just goes to show you that no matter how full your life may seem,
there's always room for a couple of cups of coffee with a friend.'