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October 24

posted Oct 24, 2010, 6:25 PM by Sean Molby   [ updated Oct 24, 2010, 6:26 PM ]

Pretty uneventful weekend, didn’t do much except for hang out at home with the kids.


Tristan is off his continuous feeds and on feeds every three hours now, moving to every 3 ½ hours tomorrow and then we will VERY GRADUALLY start to stretch it out again. We still are not sure what was causing the vomiting, he was still doing it on the continuous feeds just not as severe but being on them has seemed to help him with digesting his food better. It may have just been a combination of everything: too much food at once, withdrawal, and the stomach bug. The fact is now he is doing better and that is what counts.


He has LOTS of appointments this week. Physical therapy tomorrow morning followed by a hearing appointment at noon and a special care clinic appointment at 2. He has his home nurse come Tuesday morning and then a hematology appointment at noon on Wednesday and then his occupational therapist on Thursday. We also have to go to his cardiologist next week but he is squeezing him in so we don’t have the day and time yet.


They presented him again on Friday at the cardiologist conference. No one had any new info or ideas but they all agree another by-pass surgery is needed to clear whatever obstruction is in his left pulmonary artery. I don’t remember if I mentioned last post or not but they now believe that the obstruction is from scar tissue (more so than a clot or stenosis) and because of that, if it is scare tissue, they will have to do several interventional caths throughout Tristan’s life (unknown how many or for how long) to keep the left PA open. We will just have to see what happens at his next surgery-something I am not particularly looking forward too,


The kids are almost ready for Halloween. Briahnna is going to be a gypsy, Ella chose to be Tinkerbell, and T is going to be a monkey! It will be nice to have all the kids together to go trick-or-treating, especially since T will most likely still be in the hospital for Thanksgiving-we still are not sure how long the recovery time for this next surgery will be. The traditional Glen, which is also an open heart by-pass, has an average recovery of 7-10 days so I am not sure if this one will be like that or not.


Not much more to report. Still trying to get the house organized and clean- a never ending task. We still have tons of boxes to unpack. I am not sure it will ever get done LOL, every time we think we are close to being done 5 more boxes seem to appear out of no where. One day at a time. Oh T is getting his first tooth and he does not like it one bit. He has been put through hell and tolerated it like a champ but boy is he cranky with getting his first tooth! J


Thanks again for all the thoughts, prayers, and support! I will update again on Friday and let you all know how his appointments went this week!