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November 7....surgery in 11 days

posted Nov 7, 2010, 11:42 AM by Sean Molby

Another super busy week last week.

 

Already told you about last Monday, PT went good. He has his next visit tomorrow so you all will find out about it this weekend. On top of his scheduled in house PT sessions I also work with him daily at least twice a day for about 30 minutes to an hour each. I think he is making some good strides but it is definitely a lot of work but TOTALLY worth it! He is really close to sitting up on his own I think! He still won’t put any weight on his legs independently but hey one step at a time.


Tuesday he had his cardiology appointment. No miraculous recovery
L His bypass surgery is still on for November 18th. Dr. Kaine was happy with what he saw and was really excited to see him off oxygen. He okayed Tristan taking baby food as T is willing and as long as OT deems it safe. So kind of excited about that cause I will at least get to feed him something even if he still won’t take a bottle. So far he has had peas which he deems edible J, sweet potatoes which he LOVES. He is not such a fan of squash, carrots, green beans, or spinach/carrots but so far I have not found a fruit he won’t eat he has tried pears, bananas/mixed berries, apples/prunes, and just plain bananas. He also likes his teething biscuits but unless I hold it for him he forgets it is in his hands! LOL

 

We got to go eat lunch with grandma and grandpa Tuesday too. It was their anniversary so it was nice to get to celebrate with them. Of course dad held Tristan like the entire time J I also let him show him off at his work, as long as he promised that he would not let anyone hold T or do a lot of touching. T LOVED all the attention and I think all of dad’s coworkers fell in love with T themselves!! It was nice to get out and feel a little normal for once.

 

Wednesday was his home health care nurse visit. Tristan now weighs 18 pounds 5 ounces so he is gaining about 20 grams a day which is right where they want him at! His blood pressure is still good in fact it is now in the upper 80’s/40’s so even better than the week before. Ellen got to watch him eat a little baby food too and she was really excited to see how well he was doing with it! Over all she was happy with what she saw and how Tristan is doing. We talked a little about me asking the doctors to keep home health for at least once a month after this surgery until his stage 3. It is uncommon for CMH to do this but I have found through other heart mom friends and my own research that other hospitals consider it routine to continue home visits until the third stage surgery, so wish us luck on that proposal! I find it very important because a lot of the fatalities with these kids are in-between surgeries while they are at home so I find it vital that we keep constant care and observation available for T until he makes it to his 3rd stage especially considering how fragile he is and his history!

 

Thursday was OT and it would have gone great had T managed to stay awake!! Unfortunately he conked out after about 20 minutes so we didn’t get to do too much work but he did fairly good with what she did work on! He still won’t take a bottle but he is doing a little better with a pacifier; he will take one now as long as you hold it in his mouth. He will only hold it in himself for a few seconds but progress is progress and that is better than even a few days ago!

T is close to being completely weaned off his sedation meds. He should be completely off in a little over a week. He is still a little fussier than normal but we are going a little faster with weaning than we were. I really want him to be off before surgery. He does okay; he just always wants someone holding him. Which let me tell you is really not such a hardship J makes keeping the house super clean not very possible but I have decide that is a sacrifice I am willing to make. I don’t want to look back and say “I wish I had held him more and just said screw the house work” if anything happens I want to be able to look back and say “At least I spent as much time with him that I could have”

 

It is not something I like to think about but I do have to face the daily realization that tomorrow may be a day that T isn’t with us any longer. I hate that the thought of death is a constant companion in my head but I know too many heart moms and heart angels to not accept it as a possibility. It is scary and oftentimes overwhelming! I hate that my family is going through this. I hate that my son has to be in so much pain and go through so many terrible things. I hate that Briah has to worry about her little brother. I hate that Briah and Ella have to be away from us for so long when T is in the hospital. I hate CHD!!! It is not fair that anyone should have to go through this. But I am thankful for EVERY SECOND I get with my son. I am thankful for every smile, every cry, and every hardship. Because I know as much as they suck they are still a blessing because I could not have him and that thought is worse than anything I have to go through. That is a pain I don’t want to have to experience; in truth I am not sure I am strong enough to handle it if anything were to happen to T. So I just have to keep trying and working. I have to keep reminding him how much we love and need him and hope that God will keep giving us time with him. Surgery is less than 2 weeks away. I don’t think I am ready for this again but we don’t really have much of a choice. Hopefully T has had enough recovery time! Please keep him in your prayers as we still are in need of lots of them. Thanks again for all the support everyone. I love you all huge heart hugs and thanks from me and my family!

 Christy

 

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