Status Updates‎ > ‎

August 1, 2010

posted Aug 1, 2010, 9:42 PM by Sean Molby

Last week was extremely eventful and busy.


On Monday’s home visit we found he is still gaining as well on the Nutramigen as he was on the Elecare. He is now 12 lbs and 9 oz. His feeds are now up to 120 ml over 30 minutes-what a little piggy J His blood pressure is still really good and she has no new worries with him. After that we got to visit with his new friend Henry (who will be 1 in about 3 weeks), who also had a rough start in life and his mommy, Christie, a friend of mine from the SPED class I worked in Lawrence. They came up to see us for a while. It was awesome to get to see them especially seeing how well Henry is doing and how far he has come. Henry developed a huge crush on Briahnna; he is really into older women! J


Tuesday Tristan got to go to Deanna Rose Farmstead with his two big sisters and all of his cousins-we also met up with one of my old daycare families. It was neat to see how much they have grown just in the last few months and also sad cause it reminds me of how much I miss them. It was REALLY hot so we didn’t stay long and we all opted to hang out at the pool, the kids had a blast and Tristan was hilarious chilling out on his floaty in his shades and sunhat! It was nice to just act normal for a while.


Wednesday, Tristan had his cardiology appointment and his occupational therapy evaluation. Both appointments went well. The OT re-evaluated Tristan’s oral eating skills and assessed that he would benefit from starting small oral feeds twice a day with a slightly thickened formula, and his cardiologist readily agreed that it would be good for him. So he now gets to eat two times a day for 15 minutes each feed with no limit to how much he takes as long as it is taken within the 15 minute time frame. So far he is averaging about 30-40 ml each feed which is pretty good considering he has not eaten orally in almost two months. He, of course, loves it! He has been ready to eat by mouth for a while now.

His cardiology appointment went good but gave us some alarming news. He had another EKG and an echocardiogram; the results from the tests are showing a blockage in one of his arteries that was not there a month ago. However, this was something they had anticipated happening with the Hybrid procedure so all it means is that he is now in need of his next surgery. It is a little earlier than what we had hoped but they are very happy with his growth and recovery while being at home. He has another catheter procedure scheduled for next Friday, August 6 at 9 AM, so PLEASE remember to keep him in your prayers during that time. After they get the measurements from his cath. procedure they will determine how soon they need to do his 2nd stage of the surgery. Regardless, it will be done before the end of August.


It wasn’t completely unexpected news, I had a feeling about this all week but it is still very heart wrenching and stressful thinking about having to go through this all over again! I just pray he has grown enough and is strong enough to make it through as well as he did with his last surgery!


Since he had such a big week we kind of just hung out at home and rested on Thursday, Tristan was a bit fussier than usual which we have found out is from eating orally -go figure- he has a lot more air than he is used to so we upped his mylicon from two times a day to three or four, so far it has seemed to help.


Friday we went to the drive-in theatre with the girls and Caleb. Tristan thought it was great; he loved seeing the pictures move on the big screen. It was Ella’s first time as well; she was all over the place! She seemed to think the big open space was much better than watching the movie J daddy had to deal with her since I had Tristan, eventually she settled down and crawled in the back of the van and cuddled with Tristan and me as she fell asleep.


Saturday was a lazy day for us again. I stayed home with Tristan and Sean took all the other kids out for a day of fun since it is Caleb’s last weekend here. He is moving to Florida on Monday. It was nice just spending time holding Tristan but I missed the kids and was happy when they were home.


Today was pretty uneventful as well; we went to an early dinner with grandma and grandpa and hung out with them for a few hours. Then we came home and cleaned a bit and started to organize the playroom downstairs. I can’t begin to tell you how much fun that was! J


Next week will be another busy week. He has his home visit and OT tomorrow. His cousins are coming over on Tuesday, Briah has school enrollment on Wednesday, and then we have preadmission at Children’s Mercy on Thursday and then his procedure on Friday. So until and even after then please remember to keep Tristan in your prayers as he is in need again of all the strength and help he can get as we face this next stage!

Again, Thank you all for everything