This morning his RA line to his heart had cracked at the attachment piece so it had to be taken out due to risk of infection. A picc line was originally planned for today but when we arrived at the hospital, they said he no longer was scheduled to get one because they were able to get IV access in his right arm.
His x-rays looked good and his goal for milk intake is up to 600mL. Today he weighed 11 pounds 11 ounces. They hope to move us to the CCU (Cardiac Care - step down- Unit) tomorrow.
Now that the RA line came out we finally got Beau cuddles!! It was so nice to hold him after a week of him laying in the hospital bed on his back.
Mommy and Daddy with their little sweetie!
Nana Meredith got Beau a Triceratops hat!
Tuesday, February 11, 2014
Today Beau's goal for milk consumption was increased. He is not taking that much daily by bottle yet though so they put in an NG tube. :( Of course this was disappointing to us because he was such an awesome bottle drinker before but his goal of 800mL (about 27 ounces) is more milk then he's ever been expected to take. We know it's not permanent and the more practice he gets the more he'll take so it'll just take some time to get him back to where he was. On the up side, we're able to give many of his megs through the NG tube instead of by mouth (which he hates since they taste BAD!)
We moved to the CCU late this afternoon! We got a room all to ourselves too which is awesome! He is back in IV lasix because his xray looked a little "hazy" which means he has a bit more fluid then they would like being retained.
Today Beau found his mouth; he has began sucking on his mittens! He is 11 pounds, 7.4 ounces... down a little from yesterday which could be because of the diuretics he's receiving. We also noticed that his eyes, particularly the right eye, is beginning to wander inward...hmmmm? We might have to get an ophthalmology consult when we return home.
Wednesday, February 12, 2014
Today was primarily just a feeding day and trying to balance out medications for him to go home on. Beau was out of his room for quite a while today. When Beau was admitted into the hospital, we were approached by several research projects wanting Beau to participate. Of course we said yes becuase we have always been on board with helping research or anything that could advance medicine in the areas of Down syndrome and Congenital Heart Disease (CHD). So today he got an MRI done for one of the studies.
He was more and more awake and alert today. I finally pulled out his toys to play with he was a happy camper!
Thursday, February 13, 2014
Overnight last night Beau had to be put back on a low amount of oxygen due to desaturations (drop in o2 levels.) He's been a bit more fussy the last two days which we believe could be due to pain since we're now moving him and holding him more so he's on some Tylenol.
Bottle feeding is going okay, whatever he doesn't take from his 135mL is then given through his NG tube. We inquired about a speech/OT consult to see if Beau is ready for a level 2 bottle nipple and the Speech Pathologist came to visit Beau today. She watched him using our home bottle and thought he was having more difficulty feeding so she suggested a swallow study to make sure he was swallowing properly. This is scheduled for tomorrow.
Friday, February 14, 2014 Happy Valentines Day
Today we are doing final preparations for a discharge tomorrow! Beau got his Synagis shot for the RSV season. This is just a shot he gets once a month with live antibodies to fight off infections this time of year. It's standard that children at high risk with diagnoses like CHD receive this vaccination.
Beau also did his swallow study today. They took him to radiology and put barium into his milk. The barium then shows up on the x-ray so they can see where his milk is flowing when he swallows. It was very fascinating and thankfully, Beau had no aspirations and the milk was being swallowed properly down his esophagus!
This LOVEABLE boy just wants a little kiss... just a wittle one... <3
Grammy Sue got Beau a cute Love outfit for Christmas and it was perfect for today!
Sue K. (Andy's uncle's sister) brought Beau a Valentine's Bear!
She works at the hospital in the nurtition department and
she has been so helpful and supportive during Beau's stay at CHOP.
Saturday, February 15, 2014 Beau is 5 months old!
Beau's morning x-ray looked nice and clear. He is having occasional de-sats but noting the cardiac team is worried about. After a morning of prepping to go home, we were discharged in the late afternoon hours! We gathered up all the hospital goods and headed to the hotel.
Mommy and Beau waiting to be discharged.
Daddy putting Beau in the truck to head back to the hotel!
Beau and his friend Rex. He wants you to check out his big belly!
Sunday, February 16, 2014
At Beau's midnight feed he was a little fussy and reluctant to take his milk as it was mixed with sodium chloride which tastes awful. We got him to take about half of his feed (2oz) and put then rest through his NG bag.
At about 3:30 he was up crying which is VERY abnormal for Beau so we figured he was having some discomfort post surgery so we gave some Tylenol. He also got his Lasix which is the diuretic he went home on and this is typical for heart babies after surgery. During this 4am feed he was retching (dry heaving) and threw up much of his feed. We just thought he really wasn't loving his medications and that they may be upsetting his stomach.
He woke up shortly before 8am and we gave him his two reflux/antacid meds. At his 8am feed I really noticed that he was sweaty as a clam and he was breathing very irregularly, labored with retractions where he was sucking in under the ribs. I had remembered our home doctors to let them know if I ever saw this breathing. Well this feed didn't go well either, more retching and we stopped at 20 minutes and put the rest through his NG tube.
Well we were headed home so we packed up the truck and got on the road. Within an hour Beau was fussy and I thought that was not typical behavior for him. He usually sleeps from 8-12 and with being in the car we thought he'd sleep through to lunchtime. I hopped in the back and gave him some attention and he dosed back off. A half hour later he was crying again so we pulled over and I took him out of his carseat. He was SO sweaty and I cradled him to calm him down but he started retching again. This time I really got concerned because he was not being fed to try to throw something up so I told Andrew I was going to text our cardiologist to get her opinion. She called me back immediately and told us to turn around and head back to the hospital. We were just into Delaware so we turned around and headed back to CHOP! We had to stop again shortly for another crying session but eventually got him to sleep and made it to the ER by 1pm.
Beau was quickly admitted and given the full work up. It was honestly the worst two hours because he was supposed to feed at noon and they had to skip his feed. So he was not only being poked at but he was starving so just cried and cried.... we were unable to sooth him. Unfortunately, Andrew and I have not relied on the Nuk at home because he is easily soothed by being picked up or given his bottle but often self soothes himself. Well it backfired on us today when we couldn't calm him down. He got an EKG, Chest x-ray, got labs, and was put on oxygen right away. They put in an IV using a new ultrasound technique which was SOOO cool to see and it ensures almost perfect IV placement. We were in the ER for about 3 hours and then admitted to the CCU by about 4pm. The initially thought he had pneumonia because his chest x-ray came back very cloudy but within a short amount of time they ruled that out because he didn't have a temperature.
We headed up to our new room in the CCU.. this time we were in a pod with 4 others beds but they were all empty so it temporarily feels like our own room. It's nice in a way that it's open feel gives us comfort in knowing that Beau won't be left crying and nobody can hear him.
He finally got to feed from a bottle at 4pm. We only let him take 2 ounces to not stress out his body and put the rest through NG. They did the same thing at 8pm but he seemed to be still working hard to feed. At that time they decided to only feed him through the NG tube overnight to give his body a rest.
Since the option of pneumonia has been taken off the table the cardiac team believe Beau developed a chylous effusion (also called a chylothorax.)
Here's wikipedia's version of the explanation:
Its cause is usually leakage from the thoracic duct or one of the main lymphatic vessels that drain to it. If the patient is on a normal diet, the effusion can be identified by its white and milky appearance, as it contains high levels of triglycerides. The condition is rare but serious, and appears in all mammals. In animals, chylothorax usually results from diseases that cause obstruction to the thoracic duct, preventing lymph from draining normally into the venous system.
At Beau's midnight feed he was a little fussy and reluctant to take his milk as it was mixed with sodium chloride which tastes awful. We got him to take about half of his feed (2oz) and put then rest through his NG bag.
At about 3:30 he was up crying which is VERY abnormal for Beau so we figured he was having some discomfort post surgery so we gave some Tylenol. He also got his Lasix which is the diuretic he went home on and this is typical for heart babies after surgery. During this 4am feed he was retching (dry heaving) and threw up much of his feed. We just thought he really wasn't loving his medications and that they may be upsetting his stomach.
He woke up shortly before 8am and we gave him his two reflux/antacid meds. At his 8am feed I really noticed that he was sweaty as a clam and he was breathing very irregularly, labored with retractions where he was sucking in under the ribs. I had remembered our home doctors to let them know if I ever saw this breathing. Well this feed didn't go well either, more retching and we stopped at 20 minutes and put the rest through his NG tube.
Well we were headed home so we packed up the truck and got on the road. Within an hour Beau was fussy and I thought that was not typical behavior for him. He usually sleeps from 8-12 and with being in the car we thought he'd sleep through to lunchtime. I hopped in the back and gave him some attention and he dosed back off. A half hour later he was crying again so we pulled over and I took him out of his carseat. He was SO sweaty and I cradled him to calm him down but he started retching again. This time I really got concerned because he was not being fed to try to throw something up so I told Andrew I was going to text our cardiologist to get her opinion. She called me back immediately and told us to turn around and head back to the hospital. We were just into Delaware so we turned around and headed back to CHOP! We had to stop again shortly for another crying session but eventually got him to sleep and made it to the ER by 1pm.
Beau was quickly admitted and given the full work up. It was honestly the worst two hours because he was supposed to feed at noon and they had to skip his feed. So he was not only being poked at but he was starving so just cried and cried.... we were unable to sooth him. Unfortunately, Andrew and I have not relied on the Nuk at home because he is easily soothed by being picked up or given his bottle but often self soothes himself. Well it backfired on us today when we couldn't calm him down. He got an EKG, Chest x-ray, got labs, and was put on oxygen right away. They put in an IV using a new ultrasound technique which was SOOO cool to see and it ensures almost perfect IV placement. We were in the ER for about 3 hours and then admitted to the CCU by about 4pm. The initially thought he had pneumonia because his chest x-ray came back very cloudy but within a short amount of time they ruled that out because he didn't have a temperature.
We headed up to our new room in the CCU.. this time we were in a pod with 4 others beds but they were all empty so it temporarily feels like our own room. It's nice in a way that it's open feel gives us comfort in knowing that Beau won't be left crying and nobody can hear him.
He finally got to feed from a bottle at 4pm. We only let him take 2 ounces to not stress out his body and put the rest through NG. They did the same thing at 8pm but he seemed to be still working hard to feed. At that time they decided to only feed him through the NG tube overnight to give his body a rest.
Since the option of pneumonia has been taken off the table the cardiac team believe Beau developed a chylous effusion (also called a chylothorax.)
Here's wikipedia's version of the explanation:
Its cause is usually leakage from the thoracic duct or one of the main lymphatic vessels that drain to it. If the patient is on a normal diet, the effusion can be identified by its white and milky appearance, as it contains high levels of triglycerides. The condition is rare but serious, and appears in all mammals. In animals, chylothorax usually results from diseases that cause obstruction to the thoracic duct, preventing lymph from draining normally into the venous system.
In Marisa terms this means.... A thoracic duct could have been injured during his surgery. When this happens, the lymphatic fluid pools in the plural (chest cavity). Chyle is a milkly fluid made of lymph and fat that leaks from the thoracic duct into the chest cavity.... thus creating the chylous effusion (chylothorax). There are three things they can do to help this condition which I'll explain tomorrow.
Well looking back, Beau's chest tube drainage had turned to chylous a few days after surgery (meaning the drainage of blood and fluid turned milky as described above) so he was being watched closely. Well, Dr. Spray decided to let his body heal itself and within a few extra days, his chest tube was no longer draining anything so we thought he was in the clear. Well, when his feeds began again after surgery, he was reintroduced to fats through his breast milk and his Lasix (diuretics) was decreased, the medical team believes it re-accumulated.
Monday, February 17, 2014
Today they began bumping up and changing Beau's medication regiments to target the chylothorax and eliminate as much fluid from the body to help the situation. They told us the chest x-ray actually looked worse today than yesterday but they were not yet ready to put in a chest tube to drain the fluid. There are two other options that they wanted to try first to see if they could solve the chylous without a procedure. The first thing they began doing is increasing his Lasix back in hopes that Beau will eliminate as much fluid that he intakes and more. The second thing they began doing is skimming the breast milk. This means the milk is set downstairs to the human milk management center. They spin it in a centrifuge to separate the fat, this leaves the remaining "skim" milk. Because the chlye is made of fat and accumulating in his chest, they want to eliminate as much as possible from his diet. To make up for the missing calories in the milk when the fat is removed, they are replacing it with a prescription formula called Monogen.
They also did an echo-cardiogram on his heart today to check the pressures. Our cardiologist at home had mentioned that sometimes a chylothorax is caused from high pressure on the right side of the heart. Thankfully, the echo came back great with all pressures within range of what they'd see in Beau's fixed heart.
He was a major crabby pants today because they are not letting him bottle feed yet so all he wants to do is eat. It's just not the same when he's not able to drink it himself and he just gets a full stomach.
So for now it's a waiting game to see how Beau's body reacts to these changes in the coming days. They will do x-rays every morning to check his chest cavity and labs to make sure his levels from the increased meds stay within acceptable ranges as well.
Tuesday, February 18, 2014
Beau continues to be on a small amount of oxygen to help with his breathing. He is having slight retractions when he's awake or feeding but his congestion is sounding better. They are letting him do about 10 minutes of bottle feeding so he's not stressing out his breathing. The x-ray this morning looks like the effusion is layering out (decreasing) which is awesome! They increased the diuretics again as Beau was 200g in the positive today (not eliminating enough.) Today he weighed 13 pounds 4 ounces.
Beau is officially 2 weeks post surgery so he was able to do tummy time today with the OT! He did pretty well surprisingly! He officially has found his fingers to his mouth ... we love to see those small developmental steps! They also took out the small stitches on his arm and leg from the IV's that were put in at surgery.
Wednesday, February 19, 2014
Today was almost exactly the same report as yesterday. The x-ray looked better again so they have told us that no chest tube will be needed. They did report that Beau will go home on 100% Monogen formula. This is so sad to me because I've kept up with pumping so well and I had really hoped that Beau would get breast milk through his first year of life. We might be able to skim his milk at home but we have to prepare that if I can't, he will have to be formula fed for up to the next three months. There is a potential that he may get to go back to breast milk after that. To make up for some of the losses in animal fats, Beau is being given walnut oil and flaxseed oil.
Daddy secretly found Beau a monkey (mommy doesn't know how)!
Thursday, February 20, 2014
The Lord himself goes before you and will be with you;
he will never leave you nor forsake you.
Do not be afraid; do not be discouraged.
Deuteronomy 31.8
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