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May 3rd (one week post op)

posted May 3, 2010, 7:46 PM by Sean Molby

Well I never thought the sound of a baby cry could be so sweet! Tristan cried for the first time in three weeks on Saturday :-) My apologies for the delay in updating these posts, we have had an eventful weekend to say the least, and have just been emotionally and physically drained. So to catch everybody up: on Friday they attempted to wean him off of the ventilator, however as much as Tristan does not like that tube down his throat, he was having problems with this. He was having problems maintaining his O2 saturation levels. They tried this multiple times throughout the day and finally succeeded early Saturday morning.  So on Saturday he was breathing on his own, and weaning down his dopamine medication eventually coming off of this and starting captopril, this is a heart med that he will be able to continue at home.

During all of this we had a big scare, Tristan’s heart rate dropped very low several times during a period of about 15 minutes, these heart arrhythmia’s are very alarming, and can be fatal. With no explanation as to why these were happening, Tristan was hooked up to an EKG machine for monitoring the rest of the day… and this has not happened since. The good news is that he was able to maintain his profusion throughout this time, and because of this the doctors were concerned but not alarmed. He is still doing fine in this department.

 Also on Saturday, the nurses tried six times to properly insert a feeding tube into his small intestines, each time they had to take an x-ray to confirm the placement. Poor little guy had six x-rays in one day, and by late evening they achieved success!!!! Or so they thought, today an upper G.I. test was preformed to determine if there would be any problems introducing milk into his stomach, and found the tube only ¼ of the way inserted into his small intestines. This is somewhat good news because he did not have any problems with this or filling his diaper. So that may have sped things up a bit. Sunday was a good day for Tristan, upon arrival at the PICU, Christy’s favorite nurse Brecklyn (from the NICU upstairs) was watching over him, and this made all very happy. It’s amazing how the little things in life bring you peace, anyway Tristan had a good day, mostly uneventful, weaning down his medications, and sleeping a lot.

Monday was more of the same, they removed his drainage tube, all of the staples where his incision was made where removed as he is healing beautifully (this is normally a 10 day process), and his arterial line and his picc line were also removed. Tristan’s feeds have been continuously increasing and are up to 12ml/hr, and soon he should be off of these maintenance doses and receiving bolus feedings, this is progress in the right direction.

I am hopeful that he will be moved up to “the floor” by mid-week and out of the PICU.  Tonight is a big night for us, Tristan got his big boy bed, he is now in his own crib, and both mom and I have been able to hold him with out 90 million hoses and lines getting in the way and without any bedding or blankets hindering our ability to feel him in our arms. Tonight was the first time since April 10th that we really got to hold our baby boy! We even got to put him back in his bed-no nurse help needed J  He is making good progress compared to all of the drama that happened on Friday and Saturday, but he still has a long way to go before being sent home. Please continue to keep Tristan Drake Molby in your prayers, as this is only the beginning of his journey.

~Sean and Christy Molby