Post Glenn - Two weeks later

Tucker's recovery is progressing, but slowly. He is only now slowly getting off of the Tylenol and Advil rotation. Our poor little guy would cry out in pain every time he would cough or sneeze. He is also teething and sometimes this makes it difficult to figure out what hurts. We met with Tuckers pediatrician on Monday and he is back to gaining weight, and received the four month vaccinations he missed last time they rushed us to Children's. On Tuesday we met with Tucker's cardiologist Dr. Porras. Tuckers main incision is healing very well, and the doctor removed the stitch where the central line was attached to the heart. Tucker is eating solid foods now and was doing well, so the doctor pulled out the NG tube. We need to still keep him out of daycare for another couple of weeks to make sure he does not catch anything until he is completely healed. If we can keep him healthy we won't need to see the cardiologist for 3 months, which just blows our mind after the biweekly visits we previously had made. Our RN should be by the house today to just check Tucker out and make sure he is continuing to gain weight and progress developmentally.

Everything at the house is starting to come together. We had an army of friends and family over the day of the move and the weekend after to help get all the boxes unpacked and everything put into it's place. The only real problem we had was a cord for the new oven and a computer glitch with our package order with Verizon and Direct TV. Our confirmation said the phone and Internet would be installed between 12:00 and 4:00, but Verizon never showed up. It took about an hour on the phone and 4 different departments to figure out what happened. It also took a few visits to the house for Verizon to get the phone working, and we finally got Internet on Tuesday night. Without Internet we could not update the blog, we apologize to everyone who was starting to worry.

Day 7 and Day 8...We are Home!

Mommy talked to Dr. Porras on Monday and begged him to send us home. He knows how confident we are with the NG tube feeds and all of the medications, so we got the OK for Tucker to continue his recovery at home. Tucker is still taking his Lasix, Zantac and now 40 mg of Aspirin for his medications. The dietician thinks the polycose that was added to his formula to make it 30 calorie formula made it sweeter, and may explain why he is not eating. The plan was to slowly ramp him back up to 30 calories and then slowly bring him back to 20 calorie formula, hopefully this will solve his feeding issues. At home everything is hectic because almost everything was packed because we did not think we were returning to the apartment before the move to our new house. So everyone is pretty much down to two changes of clothing and all of our dishes, silverware and food were packed. Spencer has a couple of his action figures and his Legos for toys, and we had to find something to make Tuckers formula in. The next couple of days will be crazy and we may not be able to update the blog until Friday night or Saturday morning because Gary has to disconnect all of the cable boxes, TV's and the computer and wireless so the stuff is ready when the movers arrive on Friday.

Post Glenn - Night of Day 6

Tucker got his NG tube earlier today, so at least now we know he's is getting some calories to help with the healing. He has been getting 100 cc's by the NG tube every 4 hours. He still is not liking the Nutramagin by mouth, but we need to get him feeding at least partially by mouth so he does not forget how to eat. His echocardiogram is scheduled for 8:00 am, so he cannot get formula after 2:00 am and only clear liquids until 5:00 am. Tomorrow we will be meeting with the nutrition team to see if they may have a few tricks to maybe sweeten the formula to get him to take it by mouth and then slowly transition him back to strait formula. We also need to discuss whether he needs to stay on the 30 calorie formula and when we should start to introduce him to solid foods which is usually about 4-6 months. I will update tomorrow after we get the results from the echocardiogram. Hopefully we will have great night and thank you for keeping us in your prayers.

Post Glenn - Morning of Day 6

Tucker barely ate anything at all last night. They think that he really started to like the breast milk and now won't go back to the formula. Only problem is that all the breast milk was frozen from back when mommy was still pumping, and now mommy cannot make anymore. He will be getting the NG tube today, because they cannot let him get any further behind on calories and fluids. And because he has the echocardiogram which he needs to fast for tomorrow. We have a couple of friends coming over to help with the last of the painting and cleaning before we start moving stuff in. And Gary went to pick up some furniture from his mom for our dining room, then he will be on his way back to Chilren's so I can head home and get Spencer ready for preschool tomorrow.

Post Glenn - Night of Day 5

Tucker is back to not eating enough. He ate 70 cc's of formula at 1:00 pm, 14 cc's at 5:00 pm, and 20 cc's at 9:00 pm. Looks like he is going to get the NG feeding tube again unless he does better overnight. Gary is heading home tonite to do some painting at the new house and then spend the night with Spencer. Hopefully he will get a chance to do some of the laundry and other chores that are that we are falling behind on.

Post Glenn - Midday of Day 5

Tucker was due to eat at 9:00 am, so we tried to give him another 100 cc's since he did so well overnight. He unfortunately only took half, but that is ok for this early in the day. I can now pick him up and hold him as long as we do not pick him up under the arms. The wire that they use to hold the sternum back together is much stronger than his little bones. If we where to pick him up under the arms he could quite easily break a rib and it could puncture an organ. I was able to bring him down to his X-ray, and we can now bring him to all of his testing and appointments. Hopefully we can get a chance to take him for a walk later. We are supposed to have a few visitors today and that's great it really helps to break up our day.

Post Glenn - Morning of Day 5

Well the aerobed makes a huge difference in quality of sleep. It was probably the first time I slept for more than 4 hours at the hospital. Tucker had a really good night, I am sure the oxicodone helped. He was back to eating 100 cc's per feeding or a little more than 3 oz. Overnight Danielle was also able to give him a sponge bath, and he is now completely off of the oxygen. What a difference a new day can be.

Post Glenn - Night of Day 4

Tucker has not really eaten since 9:00 am this morning. He has been extremely unhappy and has been crying on and off for hours. He is now back on oxicodone, We have been told that day 3 after the Glenn is always the worst day. Tucker was finally starting to calm down just before midnight and Gary got some much needed rest. We brought the aerobed in this time, and I think I will sleep much better. Hopefully the overnight goes well and tomorrow is a better day.

Post Glenn - Midday of Day 4

Tucker had another nebulizer treatment at 10:30 am because he still has some fluid in his lungs. He also had another x-ray at noon, and it looks a bit better then yesterday. I just met with Dr. Samantha Butler from the cardiac neurodevelopmental program. Children with heart defects often have developmental delays, so now Children's has this program to catch these kids up an give them the best quality of life possible. The program will provide ongoing support as Tucker grows and develops. I think we would like to use this program more and drop our current early intervention provider if possible, because there have been instances where we take time off of work and they just never show up and don't bother to call. Everyone here at Children's seem so knowledgable, and we have heard horror stories from some other parents about out of state hospitals and misdiagnosis's. Tucker did not eat at noon because I made the mistake of giving him his meds first, so he in now fast asleep. His bottle is good for an hour, so we will try again at 1:00 pm. We have gotten word that if all continues to progress we may be able to take Tucker home on Monday or Tuesday to continue his recovery in his normal surroundings.

Post Glenn - Morning of Day 4

Tucker had a little bit of a rough night. He is still being weaned off of the oxygen and overnight they dropped him down to half a liter. His sedated echo that was scheduled for 10:30 am was canceled. He had 70 cc's of formula at 9:00 am and is not eating as much as we would like. They say most kids barely eat after surgery and that he is doing really well. Gary arrived at 10:00 am for his shift and I was on my way home to spend a night with Spencer, who again is not listening very well at preschool. Then tomorrow Spencer has soccer and I really want to take him. I cannot wait to spend a night in my own bed.

Post Glenn - Night of Day 3

Well we are on 8 east...yay! Not too much happened today, Spencer came in with nana to see mommy and daddy. Tucker also had a few other visitors, Pam, Kevin and Isabella. And Tracy drove out from Worcester and brought me dinner. Yum!

Tucker is still on oxygen but he is down to 1 liter. He has a sedated echo scheduled for tomorrow at 10:30am however he is not eating very well. He also threw up all of his evening meds. Let's hope tomorrow is a better day.

Post Glenn - Midday of Day 3

Good news! Tuckers central line and chest tube are out! Yay! Baby steps. He is doing well he just took 90ml of breast milk that I had frozen several months ago in advance for his big surgery. His pacing wires are still in directly to his heart, these are kept inside of the chest in the event that they need to restart his heart in an emergency. He has been up most of the morning and we will be able to transition out of the CICU and over to 8 east.

On a side note one of our fellow heart families who are here from New York and have been awaiting a heart transplant for one amazing sixteen year old boy, they "got the call" yesterday. Connor and his dad have been here for almost 110 days straight. Their family is wonderful, they hug us in the hall and always pop their heads in to see how we are doing. The amazing surgeons here worked on putting Connors heart in all night last night. I just saw him in the unit and he is stable and his new heart is beating. It's scary to think that someday this might be us, since Tuckers next surgery, the Fontan will only last approximately 20 years. I guess that we will cross that bridge when we come over it, however, it's always in the back of our minds.

Post Glenn - Morning of Day 3

Tucker had a good night. He was able to have more sugar water every 4 hours. At his next feeding around 8:00 am, we can start giving him some formula. Over the last couple days his chest drain has gone from thick blood, to watery blood and is now mostly clear with a little orange tinge to it. Hopefully they will be able to pull it and the pacing wires out of his chest today. If so we may be able to go to the cardiac floor and out of CICU later today. Spencer did not listen at preschool very well yesterday, so we need to make sure we call him in the morning before school and have the talk about listening to his teachers. We will try to get another post up after the doctors do rounds in the morning and see what there plans for Tucker are today.

The next day : part 4

Tucker is still doing well. Apparently after the Glenn, kids have so much more blood flowing into there heads that they get a massive headache that lasts a few days until the body gets used to the extra bloodflow. Tucker is now on just Tylenol for pain and the diuretic Lasix to keep lungs clear of fluid. He has also had his first clear liquids "sugar water", and he was very angry when they would only give him 3 oz. Hope it's a much better night for him, he seems so much more comfortable without the breathing tube.