The Vent is out!

This morning we came in to Tyler with the vent taken out and only on a liter of oxygen. Things appear to be progressing! The fluid that is draining has now reached 200ml(cc) which is a lot in 24hrs almost the same as the first tube's drainage.  The difference today is that the fluid is now a clearish pink fluid. This is good as that means that the Thoracic duct is theoretically able to go into a healing mode. The only way that we got to this point is because they put a Central line in and are able to be more aggressive with giving him nutrients through his IV rather than through his digestive track. We are eliminating the need for his body to use that system so it will heal. Here is a picture of the Thoracic duct and Lymph system. In real life, this is not visible which is why we cannot find where the leak is and it cannot be repaired. At some point during the surgery, this was damaged. It happens roughly 4% of the time during an open heart surgery. Right now, we need prayer that Tyler will heal quickly.

This afternoon Tyler has not been able to sleep much and is acting very hungry (obviously). We pray that he will get some sleep tonight.

Here is a video of Tyler earlier this month. Holdin' his head up like a big boy!

Oh the PICU

After our eventful evening last night, Tyler wasn't satisfied and gave us an encore this morning. He quickly worsened over a matter of minutes again and his heart rate soared from 140 to over 200! He became modeled and cold with no pulses in his feet. Talk about a morning wake up call! He likes to pull these stunts right at the shift change too. We had several people working quickly to try to get blood drawn and stabilize his heart rate. Our favorite cardiac intensivist, Dr. Rotta, was on this morning and he went right to work when he saw Tyler's distress.

Again, we were quickly ushered out into a private waiting room. While we were in there, we knew he was in good hands, but it was extremely hard to leave him in the distressed state. He still only had a small peripheral IV since he is such a hard stick, but he needed a central line for the right medications to go through to help him. Last night, the best they could do was a peripheral and they were waiting until today to get a central since the IR team would be in. Tyler was not stable enough to leave his room to go down to the IR lab to have a central line placed,  so Dr. Rotta sprung into action right there. He decided to place the line himself and not wait for anyone else to get there. The team brought in all the supplies and he got to work. A little bit later our nurse came in to update us that Dr. Rotta got the line in and was going to be doing a chest tube since he was already prepped and Tyler was in clear distress from all the fluid around his lungs. The chest tube that Tyler got last week was done in the OR with a surgeon, but since this was an emergency, Dr. Rotta just did it right there in his room. He got 20cc's out right away and sent it to the lab for testing.

After all this, Dr. Rotta came to the waiting room to update us. He told us that he "went old school" on Tyler to get the line in and just went for it without the ultrasound machine becasue he could not feel a good line with the machine. He got it on the first try; impressive. I am so glad he was here to do that because Tyler desperately needed those meds that could only go through that line. He told us he went ahead and put in a chest tube since it was an emergent situation even though he had not gotten a formal consent, he knew that I had said to do what he needed to do. He thought Tyler was starting to look better all ready.

We went in to see him and he was looking much better, but his feet were very cold and he was running a fever. They were pulling labs to find out if he has an infection. We won't know the results for another day or two. Slowly, as the medicines kicked in, Tyler was warming up and getting some color back. We had to give him a blood transfusion also, but by the afternoon he was looking much much better.

Both sets of grandparents came to see him today and Connor did great at Anne and Keith's last night and today. We are glad that Tyler is resting comfortably now and we are slowly weaning the ventilator down in hopes that he can be off of it soon.

We made it through two very scary situations and Tyler is currently stable, but we definitely have a ways to go before he is well. He is battling the chylous pleural effusion still and that needs healing. He also has the SVC clot. Continue to pray for him to get stronger and for the thoracic duct to heal so that he can stop having the chylous pleural effusions.

We have been so grateful for the many prayers and encouraging messages from so many people! Thank you. It really means a lot during all of this. We are glad to have so much support. Keep those prayers coming.

"For I know the plans that I have for you,' declares the LORD, 'plans for welfare and not for calamity to give you a future and a hope. (Jeremiah 29:11 NASB)"

I just experienced the worst 30 minutes of my life. We returned from dinner to find three nurses in Tyler's room checking him over. He was screaming and a blueish color. After a few minutes of not great numbers on the monitors a cart team from the ICU was called. All of the people in the lounge across the hall were asked to leave and a team of many doctors and nurses were in Tyler's room within minutes. They were trying to get IV access and blood was everywhere since he is a terrible stick and they were just blowing out veins. The ICU intensivest decided that Tyler was in distress and he needed to be moved to the ICU.

Upon arrival to the ICU things got crazy and Tyler was not doing well. The hardest thing ever was handing him over to them and placing him on the bed. They decided to intubate him and get him sedated since his heart rate was extremely high and he was purple. The doctor pulled me out of the room as the team worked quickly to try to get him stabilized. He told me that Tyler is very sick and they needed me in the other room while they worked. The chaplain came in and I was waiting for John to get there. The code cart was also called to his room at this point. I could hear him screaming and about 20 people were coming and going(running) down the hall trying to get him stabilized and on the ventilator. All the while they are still trying to get an IV in him somewhere.

The doctor came again and told me that they will need to place another central line tomorrow in order to give him some more medicines. I am very afraid of these because this is what caused Tyler's blood clot in the SVC that we are currently dealing with. We really don't have a choice in the matter at this point. Tyler has Pulmonary Edema, fluid in the lungs. He also has some chylous fluid around his lungs still. He is really struggling.

Now that he is resting under sedation and on the ventilator, we hope to run some more tests in the morning and get the central line placed. The doctors will decide a plan then. Right now the plan is to get through the night without anymore crazy episodes. This one came out of nowhere. We were on the books to go home tomorrow and Tyler had been looking good. Things can change in an instant. Please pray for him tonight. He is fighting really hard.

Hmmmmmmmm....

Day after the failed Heart Cath...

How do I put this. Julie and I are discouraged, frustrated, tired, weary, faint of heart.

"Hear my cry, O God; listen to my prayer. From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is higher than I. For you have been my refuge, a strong tower against the foe. I long to dwell in your tent forever and take refuge in the shelter of your wings. (Psalm 61:1-4)"

They will be sending us home Monday in his current condition with the risks outweighing the next steps of surgery at this time. His feedings are not quite under control and we feel that we are in a worse position to return home than we were at the last discharge. His feedings are not straight breast milk and we are having to give it to him over a pump over an hour rather than some by mouth and the balance gravity fed in 20 min. Tyler at least is not puking or struggling to breath due to the fluid around his lungs. We just hope that the fluid does not come back. Time will tell.

Tyler had his drain tube removed today and he already seems to be feeling more comfortable. He is able to take a nap and not yell for some one to hold him constantly. (Could be the morphine and Tylenol T3) We look forward to returning home but still scared to have to return to Riley a possible third time.

Heart Cath Friday?

At 6pm on Thursday night the doctor came in to Tyler's room to tell me that he wanted to do the heart cath on Friday morning! What? We hadn't even decided what to do yet. John wasn't going to be here until Friday afternoon and we were waiting to decide until after we sat down with the doctor. He told me that there was not an opening next week and that if we were going to do it we need to do it Friday morning. He gave me his cell phone number so we could call him when John got into town and ask any questions we came up with.

I got ahold of John after this and he still had to pack everything up and drive all the way down here. He and Connor arrived close to midnight. Two year olds don't do well at midnight. We had a nice screaming fit but he finally fell asleep.

We got over to the hospital at 8am this morning to talk to the doctor about the two options. We decided that the stint is the best option for Tyler and gives us the best chance that it will stay open.  Tyler went back for his procedure at 11am. This one should only last about an hour.

At 1:30pm the nurse called me to tell me that the echo was wrong again and he the clot was fully blocking the SVC. The doctor had called two other doctors to the cath lab with him to try to figure out what to do since nothing was working. At 2:30 the nurse called again to tell me that they were done and were taking Tyler to recovery. The attempts have failed and there is nothing they can do. The doctor would be up to speak with us shortly.

"We failed." Two words you never want to hear a doctor say. He apologized to us that they had not stinted a month ago when he got it open while using the PICC line. Now the blockage is 2 centimeters long and there is no way to get through with a heart cath. The echos that showed "flow" before we went home lied. They were seeing another vein and not the SVC. This will not clear on its own. It is far too big. We are lucky that right now his other vein is carrying the blood. The question remains as to how long this will be able to handle the load as Tyler grows. Also, Tyler still has been having problems eating and with Pleural Effusions which can be made worse by this clot. Right now it appears there is nothing more to do. There could be a potential surgical option, but right now the risk outweighs the benefit for Tyler. We will just have to wait and see.

SVC Intervention

The attending doctor this week is the doctor who preformed Tyler's first heart cath balloon procedure on the SVC. This procedure was particularly stressful and we were very relieved when it was over. Facing a second heart cath is not where we want to be right now at all. He is talking about either doing another balloon or inserting a stint. He admits that he is an interventionist so we have asked for some other opinions on what to do with Tyler.

Two of the other cardiologists here agree that something should be done right now but they are leaning more toward avoiding the stint. We sent Tyler's echos and info to cardiac cath doctors in Texas and Toronto who deal with this in infants more frequently. Both say that without a doubt, we need to stint Tyler. Here they do not stint babies very often, maybe one or two in a whole year. That is how rare this is. If we do the stint we are committing Tyler to having a metal stint in his body forever at 2 months old. He will also have to have the stint expanded at least one more time in his life as he grows. If we do the balloon, like last time, it is much more likely that it will close back up again now and we are back where we started again.

The doctor said that looking at the schedule he could probably work Tyler in on Monday. Next week's schedule is crazy and they think there is a case that will cancel on Monday. The sooner we do this this better because it will only get worse the longer we wait.

Flashback!

On Monday Tyler had an echo cardiogram to check to make sure things were still looking good now that the chest tube has been draining for a week. Everything looked good. I always ask the doctor to show me the svc flow and there was some flow still. He said not a lot, but some. I thought this was good and that there must not have been much of a change since the last time.

Imagine my surprise when Tuesday morning during rounds the attending doctor tells me that his SVC is blocking back up! What? I was there for the echo yesterday and that doctor said there was flow! Blindsided by this new information I am in shock. He said he compared the echo from July 2 to Monday and it was significantly less flow. The clot is closing back up and he strongly recommends that we intervene. I was too in shock to think about it right then. We would talk later.

All the while Tyler's tube drainage has significantly slowed. He only had 6 mls out in 24 hours! Great news. We had an xray just to make sure that the tube wasn't blocked since the tube stopped draining so quickly. The tube is fine and the drainage is slowing! Great news.

Later in the day Tyler threw up some more lactobezoars. Not cool. He is back on the enfaport formula that makes him do this. The formula is helping the pleural effusion but it is hurting his stomach.

I really feel like I relived a day 5 weeks ago because of the svc obstruction and the lactobezoars again! I am still in shock of these huge steps back in his recovery but I am happy about the slower drainage.

Still Draining Still White

I know I haven't updated in several days. This is because not much has changed. Tyler still has the tube and it is still draining. The fluid still looks like milk. None of this is good. The doctors had told us that the tube could drain for up to five days and we would see the fluid change from white to clearish. Well. today is day 5 and the fluid is still coming and it is still as white as when we started. We were seeing a nice progression of a little less fluid every day...until yesterday. Yesterday it jumped back up to more than the day before. We are running out of options and the next step isn't appealing but we aren't there yet. Please continue to pray for Tyler and that this fluid would be clear and stop soon.

Connor and John are here for the weekend. Connor says we need to bring Tyler home now. He misses being home and having Tyler. He spent the last week and a half at grandma's. He was excited to see us and brought us some yummy cookies.Grandma and Grandpa took us to the museum today and Connor loved the dinosaurs. He also wanted to fly the airplane.  John and Connor will hold down the fort at home next week. I hear they have lots of projects to work on after John gets home from work to keep them busy.

Draining Draining Draining

The tube is draining. We are draining. This situation is draining!

The surgery went well and there were no complications. Dr. Turrentine actually cleaned up his chest scar while he had him there since there was a small scab and stitch that didn't dissolve all the way. When we talked to him after the procedure, he mentioned that he cleaned it up and wouldn't be using that type of stitches again. (I guess he was trying something new on Tyler.) He said he drained 100cc's in the operating room! The fluid looks just like milk and is called Chylous. This is caused by the fatty part of milk leaking through his thoracic duct and building up in his pleural space below the lungs. The lungs are not able to fully expand when the fluid is in their space, so he has trouble breathing. His fluid has built up mostly on his right side because he has the blockage in his SVC.

The tube will be in place and continue to drain for a while. It needs to be in place until it stops draining completely for a couple days in a row. Already, we have drained almost 200cc's of fluid. This is a lot! The fluid is now less white and is starting to be more translucent but still has a milky color to it. This is good because we are getting the chylous out and the fluid is starting to look like the clear fluid that is supposed to be in the pleural space (only there needs to be a lot less.) Tyler will need to be on a special low-fat diet for a while since he can't absorb the fat from breast milk right now. This time we are trying pregestimil formula instead of the enfaport we were on previously when we had the infamous laco bezoar incident.  The pregestimil is a gental low-fat formula. So far, it has run over the pump at a slow drip through the NG tube and he is tolerating it. Apparently this formula tastes terrible and it doesn't smell great either. This is going to make eating by mouth even more difficult. I asked the doctor today when we could start offering the bottle and he didn't want to even try it for a while. I really hate feeding him through the tube. It looks like we will be doing this for a long while. Not something we thought would happen.

Surgery Day

We waited out the weekend with no real change to the pleural effusion size. Tyler is back on a couple of his medicines that we had dropped and the fluid is not moving. It is good that there hasn't been more fluid, but not so good that it is not going down. We made the decision yesterday to go ahead with the chest tube.

Dr. Turrentine, Tyler's heart surgeon, will be doing this surgery. Compared to his previous three surgeries and heart cath procedure, this is very minor and shouldn't take too long to complete. They will go in through his right side and place a small tube to get the fluid from under his lung to drain. Since the fluid will come out in the tube, it will be sent to the lab to find out what it is. Once we find out what it is we can discuss our new treatment plan.

I am really hoping that this will be the last procedure and that we can keep the fluid off. He has not been able to eat by mouth all weekend and the NG feedings are becoming difficult because he screams when it goes in. The doctors are fairly sure that this is because he has no room in his body for the stomach to expand with feedings because of the fluid. Yesterday was a difficult day because the only times he stopped screaming were when we were walking around bouncing him. I feel so bad for him. Last night they gave him pain medicines and he slept well. Hopefully this afternoon he will tolerate the feed much better.

Riley Round Two

We packed up on Wednesday night and headed to Indianapolis. Connor told us to drive faster the whole way their because he was going to Grandma's house and was excited. My dad drove over to Riley and took Connor back with him that night. Since we didn't get to Riley until late in the evening, we had to go in through the ER. We were told that they would know we were coming so there would be a room and we would be directly admitted. Apparently, someone somewhere dropped the ball and they had no record of us coming. We had to wait in the ER and be evaluated before they could admit us. They had a semi-private room available around midnight for Tyler in the heart center. As soon as we went in there I noticed that the other child was coughing a lot and asked the nurse if that child was sick and she said she didn't know. About three hours of listing to the other child throwing up later, I found the charge nurse and requested that we move because a 7 week old baby has no place in a room with a sick person! Especially one with fluid on his lungs. The only place left was a small treatment room on the floor which was fine with me because we needed to get out of that room.

The next morning, the doctors decided to get blood work, an IV and an echo cardiogram. The blood work and IV were unsuccessful. He was stuck several times by two people and neither could get an IV or blood drawn. It is so frustrating! He was so worked up that we need to give him a break before trying again. The echo cardiogram went well and the SVC shows even more flow than when we were discharged one week ago. There is quite a bit of fluid built up on his right lung that they need to get rid of. Tyler's eating has also started to get worse. He is hardly taking any bottles anymore and we have to put it down the NG tube. We need to get that figured out too.  We got a call from the Ronald Mcdonald house late on Thursday and they had a room for us! We were able to get some sleep.

Today Tyler has been screaming during the NG feeds. We can't even get 60 mils in him. The speech therapist told us that we can't offer the bottle right now because it is not safe and he is not tolerating that at the moment. We have to do 100% NG which is not what we want to do at all. We really don't like the NG and want him to be feeding by mouth. He is clearly very sick since he will not even eat. We will get a stomach xray today. The doctor is also going to stop fortifying Tyler's breast milk with formula because that could be causing his stomach to be upset. We will see how that goes today and hopefully he can at least tolerate a full NG feed.

The blood draw went better. He got stuck twice and they got enough blood to run the labs. The labs look really good which is a relief. His stomach xray looked good too. They are going to wait until Sunday to decide if they want to put in a drain tube to get rid of the fluid. Since today is a Friday, they never like to make big moves on the weekend. We went up to a larger dose of lasix (diuretic) to try to get rid of more fluid.

Good news! They have a room for Tyler in the heart center and we get to move out of the tiny treatment room. We will be able to enjoy the luxuries of two chairs, a tv and our very one private bathroom! The rooms here are so nice that we were spoiled before being stuck in the treatment room.

Home for a Week

What a week we had! Life is crazy when you are learning new things, going back to work and getting your two-year-old back into the routine. The days are full of doctor's appointments, medicines, play time. pumping and food. Friday was going to be my first full day at home alone while John was working but life had other plans. I went into Connor's room to wake him up for the day and discovered he had vomited all over and was running a fever. This was just 15 minutes before the refrigerator repair man was going to be visiting. I put Tyler in his crib and got the tub running before I called my friend whose daughters were coming over to entertain Connor to ask them not to come. I was quite overwhelmed and my wise friend told me to keep doing what needed to be done. John had to come home and help out because it was just too much to keep both boys in separate rooms and handle all of their care on top of the repair guy, the first steps lady (for Tyler's feedings) and the home health nurse who came to do an hour of paperwork that morning! What a crazy morning. Even with both of us, it was stressful being only the third day back from Riley. Tyler had a blood draw appointment that afternoon, so John took him to that. When they were on their way back from the lab in south bend (because the Granger lab was unable to get a good stick yesterday) his doctor called to tell me that the blood work did not look good and that it needed to be repeated at a different lab in South Bend that could get a better stick. John had to turn around and go to this other lab. Poor Tyler was pricked many times that day and they were unable to get a good stick and just did two heel sticks that yielded bad results. This put us in the hospital for the night. On Saturday they were able to get a good stick with the NICU nurses. His levels were good enough to go home and we were scheduled for another xray and blood draws early in the week.

Connor is adjusting fairly well to our new situation. He loves baby Tyler and likes to play with his baby toys and look at him. He is quite helpful which can be difficult when we are trying to give meds or get the tube feeds going. It has been a huge help to have ladies from our church come in each morning for an hour while I do his main round of meds. Connor enjoys the undivided attention and playtime with them. We are also so thankful for all the meals that friends and church members we don't know have blessed us with. We have really appreciated all the help.

Tyler is a great sleeper. He sleeps so well that we have to wake him up to feed him every three hours. Too bad the doctor says that won't be stopping anytime soon. He likes laying on his play mat and looking at stuffed animals.

Our blood work on Monday looked pretty good but the xray on Wednesday showed more fluid on the lungs. Our pediatrician wouldn't let me leave his office until after he talked with Tyler's cardiologist to figure out what to do. The fluid was bad enough that both doctors decided we needed to head back to Riley hospital in Indianapolis on Wednesday. Not what we like to hear, but I am glad his cardiology team will be looking at him since he seems to be struggling to breathe and eat lately.

Home Sweet Home!

We made it home! After 46 days away from home it is so great to finally be here. The four of us are together and we can figure out our new "normal" with two kids. Connor was so excited to see us and baby Tyler. Mario didn't even move from his spot on the coffee table to greet us. He must be a little mad at us for leaving him for so long. John's mom was here with Connor when we got home and she had made a great dinner and a birthday cake for Tyler. We were glad for an extra set of hands that night and on Wednesday morning. Now it is just the four of us.

First Time in the Carseat

Finally leaving Riley!

In the van going home

Things are pretty crazy trying to get medicines and schedules all figured out. We arrived home with many many unorganized bags of supplies on top of our stuff from living in Indianapolis for six weeks. Not to mention the piles of mail that we have been wading through over the weeks but haven't filed. We spent much of our first day back limping through Tyler's care while trying to figure out what bag the needed items were in. Thankfully, we have been able to get through most of the bags and put things where we can find them when needed. We will hopefully get more efficient while giving him the medical care because right now it takes us forever (with 2 people). Connor is being a good sport and loves his baby Tyler, but he is definitely not to happy about all the attention we are giving Tyler. We have been gone so much that he really needs our attention right now too. He also really wants to help when we do medicines which is not very helpful to us especially when there are needles involved sometimes.

Riley Day 46

We woke up early this morning and called over to the heart center to see what Tyler's potassium levels were. 5.6! Hopefully this is low enough to go home. I recall them saying it had to be below a 6. I really hope we will be going. We threw a few bags in the car just in case and headed over to the hospital to see Tyler. We have to wait until they round to get the official word.

No way! They decided to round in the NICU before the heart center today! They NEVER do this and it will push it back at least an hour. We must need a lesson in patience or something, but come on! Isn't 6.5 weeks long enough to wait. Another hour is torture. They finally rounded to our room at 11am. We are going home for sure! Woohoo! We just need to run across the street and check out of RMH, pick up his prescriptions that were filled yesterday and sign some paperwork.

Check out from RMH and loading up went smoothly. John went to get the medicines only to find that pharmacy had not finished them yesterday and still wasn't done! They told us they would be done by 5pm yesterday. Oh well, we can get them after we go over discharge.

Our nurse told us that we had to get the medicines before she could go over the paperwork because she had to verify that they were all correct. John ended up going back down to pharmacy three more times only to be told we needed to wait even longer because they needed to be verified! They finally finished the medicines after another hour. We went over the papers and were ready to head home!

Tyler got in his car seat and was ready to go down to the car. He didn't like the car seat! The temp was 102 and he was hot in the van even with air conditioning. It didn't help that we were leaving at 2:30 on the day before a holiday. We hit some traffic and he did not like all the stop lights. It was a long 4 hours, but we made it. We had to stop twice for a feeding and to move his car seat out of the sun, but then he slept the rest of the way home.

Riley Day 45

This morning we packed everything up from our room at RMH in anticipation for discharge. The doctors say that as long as the echo and Xray are good that we will be out the door today. We are very excited. When we got to Tyler's room, he was already down getting his Xray. During rounds the doctors were optimistic that his echo would be good and started preparing us for who we needed to see before we left the hospital. It looks like we will get out in the late afternoon. They will also need to do some blood work to make sure that his potassium is staying down at a tolerable level because it has been on the high side lately.

The hospital staff have arranged home care for us and Tyler will have a visit twice weekly by a nurse to be weighed, checked and have his inseflon changed. They called and his injections will be delivered to our home by 9pm tonight so that we can administer his first dose. This is a refrigerated medication, so I am glad John's mom is there to put it away for us when it gets there. They will also ship our NG supplies today. We have a big bag full of supplies to get us through until they arrive.

While we were down getting the echo we got some amazing news. Tyler's SVC has some blood flow! How wonderful that the clot is starting to allow flow through there on its own without a surgery or heart cath. We are very encouraged to see that the echo looks better! Looks like we will be on our way today.

They have to call the iv team and a NICU nurse to draw Tyler's blood because he is a terrible stick. They are taking forever to get here to get it done. The dietitian came in to discuss how to fortify his milk so that he gets more calories and went over his feeding schedule. Then we spoke with the speech therapist about getting connected with First Steps when we get home to keep working on getting him to feed by mouth.

Cardiovascular surgery team came to check on Tyler for his one month follow-up appointment. Since we were still in the hospital we don't have to make a trip back to Indy for follow-up. Tyler's incisions look great and he is healing well. Other than not being in large public places or around lots of people, Tyler doesn't have any restrictions physically right now. They hope that they won't need to see him again because his follow-ups will all be with his cardiologist. We are so grateful for their amazing talents and are glad to have had that team working on Tyler.

Pharmacy sent Tyler's wean schedule and medication list. We should have those available later this afternoon to grab on our way out. It looks like we will complete the methadone wean in just under two weeks.

The labs have been drawn and it is the last piece to our going home puzzle other than going over the discharge paperwork. Anne and Keith stopped by with some ice cream to see us one last time before we leave town. It was fun to see them.

Unbelievable! We are NOT leaving today. The resident just came in to tell us that Tyler's potassium is 6.8. Too high to leave the hospital. Such a bummer....it is 4:30pm and we thought we are going home. They think it is just because of one of the medicines he had been on that they just discontinued. They will check his levels early tomorrow morning and hope to get us out the door before too long tomorrow. It seems so far away and we just want to be home. At least we have met with everyone we needed to see before going home. Tomorrow, if the levels are low, all we have to do is grab our filled prescriptions from pharmacy and sign the papers to get going.

Riley Day 44

The doctor comes in this morning as says that there is no news and that is a good thing. We talked about the discharge process and all the appointments that we would be having once at home.

Here is the list of things to complete:

1. Eat on his own. -He has started taking 50% of his feeding by mouth and we have placed the feeding tube...ehh. Acceptable for going home.

2. Show that he is gaining weight. -He is up to 7lb 13oz so over his birth weight! Done

3. Reduce his fluid behind his lungs to a tolerable level. -Fluid is to a tolerable level: Monitoring Done

4. Show that breast milk does not increase the fluid behind his lungs. -Done

5. Step down the number of medications that he is on. -stopped 2 of 3 Diuretics and transition to all oral medicines.(one is a shot). Done

Last thing to check is his xray in the morning, Labs, and Echo for any other issues with his heart. We are not anticipating anything.

Training Day

The training continues...Task for today is for "The Parents" to place his NG tube.

I got a quick video before the Tube was placed. No tape on his face!

Riley Day 43

Tyler's been doing really well with his bottle and taking half of his feedings by mouth! Hopefully the NG tube will not be in for too much longer if he keeps up with this progress on feedings. It looks like the doctors will let us go home Monday or Tuesday if his echo comes back looking good and if we are able to do all of his care. We both must give him a shot twice and place the NG feeding tube down his nose twice. Both of these things are not going to be easy for me but John has already placed the NG and given the shot once. I am the type of person who hates shots and can't even watch them being given. I tried watching the NG placement last night and he coughed it back out his mouth while the nurse was putting it in. So gross! I barely made it through standing. I really want to go home so I am going to have to make myself do it tomorrow.

Today we got a better explanation of what the SVC clot was looking like. Right now, Tyler's Azygos vein is taking the blood into the heart that would have come through the SVC that is currently blocked. The diagram below shows where the clot is and how the blood is finding its way where it needs to go. The hope is that the high doses of Lovenox will help the clot reabsorb or go away.

 

I gave Tyler a shot! Wow. I can't believe I just did that. It is a ton of medicine that you have to get in and it burns, so it isn't easy. He has a catheter in his thigh where the needle has to go. It is tough to get it in just the right spot and then you have to rub it in because it makes a lump on his leg. The nurses say adults tell them that this shot burns really bad so I hate giving it to him twice a day. He will be on this dose for at least a month when we get home to help treat his blood clot.