A Very Happy Birthday!

Tyler decided to give me the ultimate birthday present...another clear xray. The pleural effusion is completely gone. Praise God for the healing of Tyler's thoracic duct. I couldn't believe that it was totally gone, so they showed me the xray. I should have taken a photo because it is clear and there is absolutely no fluid in the space. This is better than when we went home the first time because there was a small amount of fluid under the lungs then.

It is unlikely that the pleural effusion will show up again while we are still on the special low-fat diet. At some point we will need to get him back on a regular diet, but until then, things are manageable. He does not tolerate the only formula available for infants with chylothrax, so this is a challenge.(In the past, he has had the lactobezoar chunks.) We are mixing it with skimmed breast milk to try to make it easier on his stomach. He is getting 1/3 skimmed milk to 2/3 enfaport. Since he has been throwing up some of his feedings, we decided to stay overnight one more day to be sure that he can keep down feedings before heading home. We will need to feed him with a special feeding pump using the NG tube. The pump is nice because it can make sure that feeds go in over a 45 minute period.

This morning we came in expecting to be going home after rounds. Tyler decided to give us a lactobezoar enchore. I guess it would be too easy to finally just go home without anything crazy happening. He had some more lactobezoars at the noon feeding but they were smaller. We have decided to back down the enfaport to skim milk ratio to 1/2 and 1/2 since he has tolerated it this way before. We have to give him this formula since there is nothing else available with low enough fats for the chylothorax.

Since the doctors aren't going to do anything else for the lactobezoars; we decided that if he keeps down his next feed we will go home today. We hope that he can handle it for at least a couple months so that we can be sure he can take fats again. With the current ratio of milk to enfaport, he will not be getting the full amount of calories that he needs, but it is better than throwing up every feed. We hope his thoracic duct will be able to tolerate milk again in a few weeks and we can stop the enfaport.

Clear XRAY

So exciting yet so unbelievable. Tyler's xray Wednesday morning was clear! I am still not convinced that he could actually be better, but it appears it really could be true this time. Too many times we have gotten our hopes up only to be brought back to the reality of more chylous effusions. They want to do another xray on Friday to see if there is any change.

Tyler's feedings aren't going well. Early in the week he was taking 30 mils every time from the bottle. He needs to be taking closer to 100, so we placed an NG tube. He will no longer take anything from the bottle and he is vomiting quite often after feeds. The fact that he isn't taking any food by mouth makes me think something is probably still wrong. I am hoping that it is nothing, but I still can't help but think his effusion may be coming  back.

If the xray looks good tomorrow, we may be going home soon. I just want to get the feedings figured out enough that he isn't vomiting. Other than the feeding, he is doing great.Very happy and sleeping well too.

3 Months Old!

Tyler turned three months old yesterday. I still can't believe he is 3 months already. The time is going by too fast and too slow all at once. He really enjoys going for walks in his stroller around the unit. He also loves his pacifier and bouncing.

We started feeding him again this weekend and so far he is doing great! He is setting the pace these first two days, so we let him take whatever he wants from the bottle. He is ranging from 10-30mils per feeding which is great for reintroducing food. He is only getting skimmed breast milk right now since he is still on the TPN. Monday we will start adding the enfaport low fat formula back into his diet. We won't be able to tell the results of his effusion until midweek. We are praying that the effusion stays away and that these two weeks of no feeds have given his body time to heal and create new pathways for the fluids.

We learned this week that the reason for the chylous effusions right now is no longer from the surgery but from the location of his SVC clot. The clot is sitting right where the thoracic duct dumps, so the fluid really needs to re rout itself some other way. Right now, it is just overflowing into the pleural space. Over time, his body should adapt and create new pathways for the fluid. The doctors are hoping that this was happening during the past two weeks while the chest was dry. We had been under the impression that this effusion was just a result of a nick during the surgery, but it is actually because of his clot.

Keep praying that his effusion stays away this week. We are ready to bring him home for good.

Tyler and Daddy

Mommy and Connor at the Museum

Getting Ready for a Walk

Another Good Day for Tyler

Tyler had a smiley day today. We are on day 9 for not eating and the xray showed no visable effusion! (There really shouldn't be since he isn't eating, but hey, at least it is dry so it can heal.) We will be talking with the team tomorrow to get an opinion on where to go from here. His surgeon came up today and said he would like to see him stay on TPN until he has had clear xrays for 7 days in a row before we introduce a low-fat diet. We will have to check back and see how many days of xrays have been clear to be sure we have gone a full 7 days. I still want Dr. Rotta, the cardiac intensivest, to give his opinion since he has dealt with several other cases like Tyler. Here's to hoping that it is working this time. We won't know for sure until we feed him.

I took these pictures this afternoon! I'm really enjoying his face without tape. It won't be long before we have to put the NG back in, so I will take many pictures for now.

On a side note- thanks to the many friends for all the encouraging words, packages, food and prayers. We really appreciate it. Today, it was touching to receive a gift of cupcakes from a friend of a friend who doesn't even know us! We are truly being blessed by so many people. Thank you all.

12 Weeks Old

Not bad for using a timer

Tyler is 12 weeks old! He is still on the not eating plan  until at least later this week. He's pretty crabby, but we managed a few good pictures this weekend. I love seeing his face without the NG tube.

12 WEEKS

Back Upstairs!

Praise the Lord! We are out of the ICU. I am so glad to be out of there and Tyler is too. He was missing all of his girlfriends from the heart center. He was welcomed back today by many of his favorite nurses.

On Sunday we had the two options for going forward and we were waiting to hear back from the surgeon....well, he is off this week so he thought we should do TPN until Friday and then do pleurodesis. We did not like this option because it was essentially exactly what we did the week before with the TPN and would require a new PICC line and the painful surgery. If we were going to risk a PICC, then we need to try TPN to its full potential and not do it half way. We asked for the opinion of the cardiac intensivist who we had been working with (who is out of the country this week). He has experience working with stubborn cases of chylous effusions. He told us that Tyler reminds him very much of another patient that he had five years ago that was the worst case he had ever seen. At least he thought Tyler's wasn't quite as bad as the other and the other child is 5 today, so that was re-assuring. We won't go into how long the other child was in the hospital. His opinion is the try the TPN for at least 7-10 days to be double what we did last time. We are still afraid of the PICC line since it is the reason for our current issues. We are hoping for no clots this time. The hope is that Tyler will heal during this time of no feeding and his body will develop some collateral vessels to help absorb the fluid back into his system.

We started the TPN on Sunday night and stopped all of Tyler's feeds. He is a real trooper for going at this again with no food. He still manages to have some happy times during the day with huge smiles. The rest of the day is spent being held and bounced. We weaned his Oxygen off today and pulled the NG tube out since he isn't getting feeds. I can't wait to take some photos of him with no tape!

Not Better...Worse Actually

I've been putting off this post. I guess I'm in denial that once again we find ourselves stepping backwards. I really thought we had it this time. I was wrong.

Saturday he had barely any output in the tube. I couldn't believe how great that was and thought he was healing. The disappointment I felt on Sunday morning when I learned there had been a kink in the tube and he drained 60 mls of pure white Chyle overnight can not be described. We feel helpless in this situation. Over and over we reach new depths of disappointment as the weeks roll by and our interventions fail.

We have been presented two options to try and each has only a 50% success rate. Each have different risks as well. We will either stop feeding him anything for 2-3 weeks and give nutrients through a central line or try a painful surgical procedure call pleurodesis. Tyler has a large blood clot from his original PICC line that complicates everything.  We are seeking the opinions of several doctors before we proceed. His surgeon is reviewing his case today and will hopefully be able to tell us which he thinks is best for Tyler before too long.

We appreciate your prayers for healing, wisdom and endurance. We are nearing the three month mark and are completely drained. We are all apart and very tired. I am missing Connor more every day and really want to be home again soon.

Psalm 62:1-8
1 Truly my soul silently waits for God;
From Him comes my salvation.
2 He only is my rock and my salvation;
He is my defense;

I shall not be greatly moved.
3 How long will you attack a man?
You shall be slain, all of you,
Like a leaning wall and a tottering fence.
4 They only consult to cast him down from his high position;
They delight in lies;
They bless with their mouth,
But they curse inwardly. Selah
5 My soul, wait silently for God alone,
For my expectation is from Him.
6 He only is my rock and my salvation;
He is my defense;
I shall not be moved.
7 In God is my salvation and my glory;
The rock of my strength,
And my refuge, is in God.
8 Trust in Him at all times, you people;
Pour out your heart before Him;
God is a refuge for us.

Very Smiley Today

No heart center today, we are still in the ICU with hopes that we can move back upstairs tomorrow. The doctors decided that they wanted to watch his fluid output one more day down here. The good news is that he is in a great mood. The best all week. Most likely because we are feeding him full feeds through the NG. Speech came today and we got to try a bottle for the first time in three weeks. He did pretty well by taking 16 mls without choking or crying. The second time it was offered did not go so well.

His central line is in his groin and is a very risky place for infection since he wears a diaper. We are out of options though since the picc line left a blood clot in his SVC and we need to stay away from the heart. They have had to change the dressing twice a day lately because it gets dirty. We need to get this line out soon so that we don't get an infection. We hope to get it out tomorrow and are praying that we won't need another central line

His fluid output was looking cloudy in the tube today. It didn't look like milk, but it was not as clear as it was yesterday. We are really hoping that it doesn't increase in volume. If it does, we will need to look at some more aggressive options for the pleural effusion.

Here is a snapshot of some of the happiness we experienced today...hard to believe he is so sick!


Just made you Yawn!

Matthew 11:28-29 Come to me, all who labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls.

One more day in the ICU

Today we finally started feeding some skim breast milk. This was paired with TPN, a mix of IV nutrients. After 3.5 days of not feeding him, we were more than ready for this. Tyler's X-Ray looked good this morning again and had much lower fluid output from his chest tube. He only put out 30ml which is significantly less than the 130 from the previous day. The doctors are happy with his progress but are watching his every move. We are looking forward to a possible move to the heart center tomorrow (Friday) as long as there is still steady progress with his fluid output and he continues to stay out of respiratory distress. He is still on Oxygen because it is helping his vessels int he lungs expand. We have had 5 feedings with the skim milk but the doctor said that we would not really see the affect of it until later tomorrow.

Tyler overall had a good day and was easier to console than yesterday, but you can still tell that he is uncomfortable from his chest tube.

"Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the LORD your God is with you wherever you go." Joshua 1:9

"fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand." Isa 41:10