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November 1---hope everyone had a fun Halloween!

posted Nov 1, 2010, 9:40 PM by Sean Molby

Well as I mentioned last post last week was super busy and eventful! Sorry I didn’t get this in Friday like I said but I spent the time with the kids and decided I would wait till after Halloween for the update!

 

We started off Monday with physical therapy. Jackie, his therapist is AWESOME!! She does such a great job with Tristan. T did really good thru last week’s session and every time she leaves I see more progress with him! We then proceeded after PT and headed to CMH for T’s hearing and special care clinic. He passed his hearing test which took forever cause he is so not interested in their testing LOL! Special care clinic started out good and then T conked out after about 30 minutes and so we had to stop but we talked and discussed plans for him and expectations. She was happy with where Tristan is at the moment, as far as she could see after a half hour evaluation. We have another appointment with her around Tristan’s 1st birthday.

 

Tuesday, Ellen, T’s home nurse came. Tristan is now 18 pounds and 1 ounce, well he was Tuesday anyway-now he prob weighs more J His blood pressure was finally back down in the 90’s not that it was super high but it had been in the low 100’s. She said he looked great and his lungs sounded good. Unfortunately Tuesday is also the day that T started getting congested (still just in his nose) again. He has been coughing a lot and we have had to start suctioning his nose out again L but he is such a trooper and is handling it with stride!

 

Tuesday night grandma and grandpa came over for dinner since my mom was leaving to go out of town for a week. She wanted to be able to see T and the girls before she left. We had a great dinner and a wonderful visit and it was nice to spend time with them outside of the hospital and with T doing good for a change!

 

Wednesday we had our hematology appointment. Now that was interesting! T was supposed to do a well visit with them and then get his Lovenox levels checked, which requires a blood draw. I was told they would already have vascular access scheduled and waiting to draw the blood since it is so hard to get blood from T. However, I guess no one checks the schedule cause by the time they called us back to the appointment room, took vitals, weighed, and measured T we had less than 25 minutes to get his blood drawn. (A Lovenox level is a timed blood draw-it HAS to be drawn within 4 hours of his last dose) Anyway, I reminded them they needed to get a level and they took us to a room and then two nurses came in to start to draw the blood. I told them that they were welcome to try once but that they should go ahead and call vascular cause they only had 20 minutes before it would be too late to draw and he was a hard stick. They started to argue with me by saying that they had to try before calling vascular. I just laughed at them and said you obviously don’t know who my son is, T is an exception you can look it up- he has 24 hour vascular/transport/anesthesia access. I had to explain yet again how difficult it is to get lines and blood from him. It is so wonderful how well all the departments in the hospital communicate!.... NOT!!   However, vascular did make it over and we DID get his blood with only 2 minutes to spare. Whew, I was sweating that one cause I was gonna have to bring him back up if they missed the time slot! Got the results back and his levels are still therapeutic so no changes with his shots! We have our next appointment with them Dec 6, they will check the clot in his leg and we should be able to stop his shots then as well!

 

Wednesday was also the awesome, wonderful day that we found out T was okay off extra Oxygen, it was an accident actually. His O2 tanks are suppose to last a specific amount of time based on how high of an output you use but sometimes the tanks are short and they run out faster than they are suppose to. I always try to check and watch but I missed it on Wednesday and his tank ran out. I am not for sure how long he was off but anytime that happens we always wait and see how long T does okay without. This was the first day he was able to stay off and keep his saturation levels up! So far he is still off and doing good, great actually he is still in the high 70s low 80s! So one less tube we have to attach to him. Which was helpful Thursday night cause we had parent/teacher conferences for Briah. Those were good she has straight A’s, well almost she still has some homework to make up from being sick but once those are turned in she will have all A’s. We are super proud of her. Her teachers are amazing and we were really impressed with how happy they were and all the great things they had to say about Briahnna! One of them even said that Briah is the type of student that makes them want to go to school and teach, that made us feel really good cause we feel so bad with all the ups and downs that all the kids have had to go through with T’s heart condition.

 

Thursday we had OT and Nicole, his occupational therapist, had a blast trying out lots of new tastes to try and get Tristan interested in food again. T just loves her and she is amazing with him! We tried cocktail sauce, salsa, steak sauce, honey mustard, squash, and bananas. There may have been a few other tastes in there but I can’t remember them. T did okay. He liked cocktail sauce A LOT until the after taste came in then it ticked him off. The salsa and steak sauce were no goes but he loved the honey mustard. He did good with the baby squash and bananas too. I kept trying those through Saturday and each day he tolerated it more and more. He is doing a little better with his pacifier and is starting to suck on it for longer periods but he is back to wanting them cold and with sweeties but hey whatever it takes! Still no interest in his bottle but we keep trying several times a day. He IS starting to chew on it to get the milk out but sucking is still not his priority! On Saturday we switched to peas and pears and he seems to like them both fairly well but he won’t eat them cold or really warm he has to have them just the perfect temperature… so I am thinking I won’t be reading him Goldie Locks and the Three Bears cause he obviously does not need any help with the lesson of learning that certain things have to be “just right” LOL

 

Friday we finally got to chill out and just rest and get ready for the weekend. So we just hung out at home and relaxed and cuddled. It was nice to have a break for at least a day! J

 

Saturday was a little more of nothing for me and the kids, but Sean went down to Lawrence to help with the benefit garage sale for Tristan. Again, thank you so much to Francine and for all of you who donated-we were able to get groceries this week with the money! Sad but true, it has been really hard since I had to quit work. I can not begin to express how much we have appreciated the support we have been shown and given. I guess there is still quite a bit of stuff left over so I believe Francine said she was going to do another sale next month. Anyways, Saturday ended with the girls carving their pumpkins and we did some last minute costume checks. Briah was a gypsy, Ella a Tinkerbelle princess (she decided that she wanted pink and purple in her outfit and I guess it is logical to think that if Tink became a princess she would get to add more color to her outfit. LOL) and T was a monkey, I will have Sean add the Halloween pics sometime this week if he gets the chance!

 

Sunday was stressful, it started off good but I had someone call and want to buy Ella’s old 18 month and 2T clothes; my add was fairly straight forward about the clothes being sold as a lot and I didn’t think anything of it as the lady looked through them. I do the same to make sure that everything is in good condition. After 1 ½ hours, yes that long, she said she only wanted like 20 things (each lot has over 150 pieces of clothes- 2 lots total) I was pretty ticked off but wasn’t about to have wasted the last 2 hours so I just sold em to her but because they came in the middle of preparing to get ready for trick or treating we didn’t end up getting everyone ready until after 7:30. By then it was way too cold to take Tristan out and Ella only lasted 4 houses. The kids still had fun but I felt really bad that so much time was wasted on the lady who came to look at the clothes. That will teach me though, next time I will just say I am busy...which is what I was gonna say but I didn’t think they would be here ALL night... oh well lesson learned!

 

Today we had PT again and Jackie was impressed with T and said she could tell a difference even from last week. Which made me feel good that all the time I spend working with T is doing as much good as I hoped! Tomorrow we have cardiology, Wednesday home health, and Thursday is OT and then we may have to squeeze in immunizations- we still are not sure if we it can get them cause in order for him to get them before his next surgery they HAVE to be given on Thursday and technically it won’t be 30 days since he got his last set until Saturday so they are trying to figure out if it is better for him to get them or if he has to wait! So another busy week and then only 18 more days till surgery… I am sooooo NOT ready for this again. Maybe we will go in tomorrow and they will do an echo and discover that T has miraculously healed himself, at least with his blocked pulmonary artery anyways...hey, it may sound ridiculous but I am actually really hoping that is what they say. I can always hope! He has overcome more difficult obstacles than this by miracles alone so why not another one! J

 

(Deep breath) but for now I will keep praying and doing all that we are. I am so proud of my little man. He is so strong and amazing. And despite all that he has been through he is such a happy boy. We have been beyond blessed with him and the girls.

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! Christy

 

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