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Wed. Oct 6th- day before interventional cath

posted Oct 6, 2010, 1:11 PM by Sean Molby   [ updated Oct 6, 2010, 9:08 PM ]

HAPPY 6 months in 2 days TRISTAN DRAKE!!


Ok, so I have tried to start this…or rather finish it, several times but between T, Ella, and Briahnna I keep getting pulled away. T is at the moment taking a short nap, Ella is watching Dinosaur Train, her favorite show and Briah is at school so I think I may get to post it this time.


 We have been pretty busy the past week. T had his GI follow up visit last Thursday. That was an interesting experience! The appointment went good but getting there would have been cause for a whole comedy show!!! I can only imagine how I looked by the time we made it to his appointment.  


To explain, just try to imagine me, by myself, getting Tristan and Ella plus 2 small O2 tanks (each 1 ¾ ft in height), an oximeter (6x8x3 in), a suction machine  (10x10x8 in), the diaper bag-packed full of diapers for both kids, wipes, two changes of clothes for T, and all his supplies for feedings plus his medications (8 of em)-, his feeding monitor (6x4x1.5 in) plus 500 mL feeding bag, and a huge double stroller….it took me 30 minutes, literally,  just to get everyone and everything out of the van and organized before we could even head up to our appointment!

 By the time I made it up there I felt like I had run a marathon!!  The doctor, however, was very happy with Tristan’s progress and development. She upped the dose of his Zantac in hopes that it may help with his vomiting or at least reduce the acid, and therefore, the damage it can cause when he does. We discussed in length him going back on breast milk and we agreed that we probably should wait until the end of this month after his G-tube surgery, just to be on the safe side. She wants to give him the best possible chance to succeed. She is optimistic that he will do fine. Especially since most babies outgrow a milk allergy by 6 months and he will be 6 months on Friday. So, waiting until the end of the month will give him a little more time. The other reason is because she said that some kids have a difficult time after the G-tube surgery with getting their bowels to move appropriately for a while, so he will go back on Elecare right after surgery for about 2-3 weeks and there is no since in switching him back and forth and back and forth.


He had his first home OT visit, post op, on Friday. It went really good. T is progressing faster than expected after being in the hospital for a month. He is still behind a little but he is quickly getting back to where he was at, developmentally, before surgery, aside from still having an oral aversion; L he still won’t take his pacifier very well but he is getting better at allowing us to use different types of oral stimulation therapy and as long as there is sweeties or just plain water he will suck on our fingers. So his OT suggested we start introducing different liquid flavors to help get him interested in sucking and wanting things in his mouth again. Our main goal right now though is getting his head, neck, shoulder, and upper back control and strength back in order to start getting him to be better able to take oral feeds, even if only a little bit at a time, again!



We had his 4 month well visit (only 2 months late J ) on Monday. Tristan is now 17 pounds 9 ounces and 26 ½ inches. He has finally made it close to the 50th percentile for both weight and height for his age group! WOOOOO WHOOOOOOOOOO!!!

To be exact he is in the 48th % for height and 53rd % for weight. That was really exciting to find out. Most heart kiddos never even make it on the charts! His doc was very happy with all of his vitals. His lungs are clear and his liver is normal (an enlarged liver shows signs of heart failure). Overall she was very happy with everything, aside from him still needing oxygen but his cath tomorrow will hopefully correct that. Since he does have a procedure tomorrow we had to wait on his immunizations again but we go back in Monday to get them. Since he is behind on his shots, his pediatrician said that the whole family needs to get updated boosters to help protect him. Let me just say, can’t wait for those!! Ha ha NOT!


Yesterday we had his neurology and pre-admissions screening! It was not such a fun day. It started by me waking up late...grrrrrr, because my phone, which is what I use for my alarm, fell (somehow) under the bed so I didn’t hear it. Very irritating! Luckily my mom had headed over to pick up Ella so that she wouldn’t have to spend all day at the hospital so I woke up when she got here. Thanks goodness! Once we got on the road and to the hospital we started our appointment day in neurology at 9:30,  only be to taken back to the room right away and then forgotten, yep actually forgotten, this was after getting a call from Briah’s school saying she was in the nurses office, again, with complaints on her knee- I had them send her back to class with ice and the promise I would take her to the doc as soon as I could get an appointment, I then called her pediatrician and scheduled her an appt for 3:30 later on in the day. Back to his neurology appt, they came in at like 11 to apologize and then said that his neurologist couldn’t come in because he was really behind so they were sending in a different doc that has never even seen T. It was ridiculous, this other doctor did not even look at Tristan, didn’t do another EEG, he barely even looked at his chart. He started talking about epilepsy and all sorts of stuff that had never even been mentioned before then said, “Well let’s take him off the Phenobarbital and see how he does” and proceeded to walk out. I stopped him and said, “Just like that? He has been on this for 6 months don’t you think we might want to wean him a little”. He thought for a sec and said, “ya, that would probably be a good idea” then looked at his chart and said to switched from 4 mL once a day to 2 mL twice a day for two weeks and then stop it and we will see how he does. So basically we spent 2+ hours to be told something they could have just told me over the phone, especially since they didn’t even examine him.


Then, we proceeded to go to his next appointment. I attempted to try and get something to eat first but the cafeteria was packed and the lines were long and I knew we wouldn’t make it to pre-admissions on time if I stopped to eat! We did get to swing by the 4th floor and PICU to say hi to all his favorite nurses that were working and managed to get to his pre-admission appointment at 12:40, 5 minutes early –GO US!!! J  They did his weight, height, blood pressure, and checked his O2 saturations levels, everything was tip top! We then went back to the room and waited…and waited…and, yep, waited. At around 1:30 the nurse finally came back took some info that they already had in the system, asked how he was doing at home and took some more info and then said she needed to go back to the other computer cause the one in the room was being slow and left us So again we waited…I called Sean to update him and then Briah’s school to let them know I was going to be picking her up from school to take her to her Dr.’s appt at 3:30, and after all that we were still waiting. At 2pm I went out to tell the nurse that I had to leave by 2:40 in order to pick up my daughter from school and to see how much longer it would be, knowing that we still had to talk to anesthesiology and go get his lab work done. She said it would only be a few more minutes. 10 minutes later I went back out saying I really needed to hurry, I then suggested they just do his labs now instead of sending me downstairs-they can do it there they just prefer not too- she agreed. It took her 5 tries and over 30 minutes but she finally got his blood work, unfortunately she didn’t restrain T properly and he pulled out his feeding tube, I was, during the blood draw, busy talking with anesthesiology who managed to come up in the middle of all this- T was due to be fed again in an hour and I didn’t bring an extra NG tube, pulling out this one was not a convenient occurrence. If, I had been able to leave right then it might have been ok but of course anesthesiology did not understand the meaning of hurry and insisted on doing a full exam-even though one had already been done twice by two different nurses. Needless to say it was 3:05 by the time I made it down to the garage and got everything loaded in the van, Briah gets out of school at 3:10! I was gonna be late!  I was luckily able to get a hold of her and let her know I was running late but to be ready. Traffic, of course was horrible. I called the doc to let them know we were running late only to be told that if we were more than 10 minutes we probably wouldn’t be seen, just great! I got to the school at 3:24 (I had to speed most the way: I HATE SPEEDING), had to swing by the house to get a new NG tube so I could feed T at 4, and then rushed to Briahnna’s appointment and got there at 3:50- 20 minutes late, only to realize that I didn’t have T’s 4:00 and 5:30 meds- WONDERFUL! Fortunately, they let us keep the appointment. I got T’s feeding tube placed, was told Briah’s problem was basically “growing pains” but we did manage to het her booster vaccination and she got the flu shot as well-plus she was able to meet the doc herself as it was her first visit, we had to switch doctors since we moved!

After that we went over to my sister’s to get Ella and made it back home at 5:20-I ran in to get T’s meds and then waited for Sean to get home so that we could get something to eat. I WAS STARVING as I hadn’t had time to eat anything ALL DAY! As stressful as yesterday was it ended on a good note. We got to spend time with the girls and T and I tried to remind myself regularly that all the stress is worth it as long as Tristan is okay!


So today we rest and spend time together before T’s interventional cath tomorrow! I won’t lie, I am petrified! I know that this is nothing, danger wise, compared to his last heart surgery, but it is still scary. T is still recovering and he is still having problems from being intubated for so long last time. I keep telling myself that he hasn’t fought this long and hard to give up now, but I am just sooooo scared. I can’t loose him. I just can’t!


Please, please, PLEASE keep him in your prayers tomorrow. His procedure should start around 10 or 10:30 am- he is second case so it will depend on when they are done with the first one on when T goes back. We have to be up at the hospital at 9 and they will take him back when they are ready for him. He will probably be staying overnight, just for observation but there is a small chance he will get to come home tomorrow night! As long as he is fine I don’t care if we have to stay for another month- I just want him to be okay. Wish us luck for tomorrow. For now I am going to spend the rest of today cuddling with my kids.  Christy