Bottle news!

I've been reluctant to even post this in fear it would jinx him, but... Since Tuesday evening, Tyler has been attempting to drink from a bottle! This is something he chose to do ON HIS OWN. Long story short, he was showing very strong signs that he wanted a bottle so I made him a 2 ounce one... and before I knew it, it was down to 1.5 ounces. No leaks on his clothes, nothing... so it had to have went in his mouth and down his throat, right?! Now, there's no actual sucking going on, BUT he's putting it in his mouth and closing his mouth around the nipple, kind of a biting motion - whatever he's doing is still allowing him to pull out liquid. Never before could he handle anything coming out of it... he'd freak, and gag, oh he was a mess! But not now. Yay! This is a HUGE milestone people!

He weighs 15 1/2 pounds now, all NORMAL weight, NOT water retention weight any more that he's carried from surgery. So basically, he's gained a half of a pound in a month, going by his pre-op weight on April 28th. In another perspective, we were discharged on 5-5-08 and he weighed a little over 16 pounds, so during the whole surgery recovery period we've lost all that - getting back down to a tad below pre-op weight - and now he's gaining it back nicely. I have no idea how long he is.... however, I am pretty sure pre-op height was 27 inches or close to it.

Heart Walk tomorrow! Woot! I'll be ready for a nap at Noon!

Almost a week later -

And Tyler is still improving each and every day. He is starting to fight sleep during the day, just like any typical 9 monther, because he's wanting to stay awake as to not miss the action. Good thing he still sleeps like a champ at night! He laughs so hard anytime Jarrett pays him attention and he loves being sat in his walker even though the whole 'walking' thing is a concept he hasn't learned yet. Instead, big brother pushes him around the house! Tyler is also starting to practice eating again since the Glenn and getting his 'all clear' from the xray last week. He seems to be taking hold of the idea and eating somewhat better than he did before surgery; but it could also just be Mommy being extra hopeful. Either way, it'll be a long road, since at this point eating and swallowing properly will have to be a taught and learned thing. I know it's going to take time and I have to remain optimistic and keep up the repetition.

This Saturday, Andrew and I, along with a few family and friends, will be walking in the Greater KC Heart Walk! I can't believe the end of May is already here... as it seems just like yesterday we were nose-deep in the Donation Drive. We're so excited! If we get a few pictures, I'll post them after the event.

Chest xray results . . .

The chest xray couldn't have been any better! It showed his chest cavity and side walls being completely clear! No sign of lymphatic leakage. I think the kid is finally on the road to a healthy recovery. As long as no other signs or symptoms show up in the next week, he should be good to go. We can resume a lifestyle that allows us to take him OUT IN PUBLIC - AS A FAMILY on the 29th! I can't believe I am actually able to say that after 9 months!

His infection on the incision site seems to be looking better and better each day.

Thank you for keeping him in your thoughts and prayers.

Big day ahead . . .

So, today was Ty's last dose of Cipro for the Pseudomonas infection and the first day back on his previous formula, Enfamil w/ Lipil. The big day will be on Wednesday, when we'll go to Children's Mercy to have a chest xray. The Radiologist, Tyler's Heart Surgeon and a CV Surgery Nurse will be reviewing it's results to decide if he is 'healed' from the Chylothorax. We're praying with all our heart that being back on the Enfamil doesn't cause him any problems over the next two days. Only time will tell.

Pseudomonas

So his infection is called: pseudomonas. It's a hospital germ. Ummm, I have to say I'm very upset (for lack of better words) about it actually. Lisa Laddish, CV surgery, said it's caused by a nurse using a contaminated glove while changing an incision (or) blake drain dressing or better yet... an infected suture(s) that they used to sew up the incision layers inside of him after open-heart surgery.

Pretty much, the infection and situation could have went from bad to worse, in a matter of hours, if we hadn't caught it as quick as we did.

The downside is that the antibiotic cost us $98.27, after insurance, for something the hospital caused. He'll stay on the Cipro (antibiotic - super strong stuff by the way) for 10 days, 2x day.

Incision site infection and other info . . .

Went in to CMH yesterday for a chest xray (which looked good) and also to have his staples removed. The night before, I noticed the skin on and around his bottom five staples turn from a light pink to a bright red. So close to coming in to have them removed, it wasn't worth calling in there at 9pm... Anyways, Tyler and I get there and CV Surgery nurse, Lisa Laddish, asked how things were going and I told her everything is great but his bottom five staples. I told her I did the betadine wipes 2x day and that it just suddenly appeared. After she pulled those staples a little bit of a white-yellowish creamy ooze came out. So she applied light pressure and just a little bit more came out. I asked her if we could swab it and send it to the lab (me being worried it could be staph or the like) Lab will take 72 hours for the culture to grow and be identified, which would put us at early Monday morning to find out the seriousness of this. Lisa thinks it could just be Tyler's skin fighting irriation from the internal sutures. Because of that, she didn't want to apply any steri-strips to the bottom inch of his incision, just 'in case' the infection wants to surface causing his incision to open up. If that happens I have to call immediately and take him in. She put him on an antibiotic and also a prescription topical cream. I hope the antibiotic works its magic fast!

Other than this ordeal, Tyler is doing great!

After his appointments, I went upstairs to 4 Sutherland (the Heart Floor) to visit Suzie and little Garrett Jones. Garrett was born a week before Tyler with the exact same heart defect. They live in Olathe. We met eachother during the boys' Norwoods and became an instant support system for eachother, and from that our friendship bloomed. She has two older daughters, 7 & 5. Garrett is doing so good! Flying thru this surgery in fact. His Glenn was on Monday and he'll possibly be coming home this afternoon... so 4 days post-op!

On a sadder note, it is with great love that I express deepest sympathy to Amy & Nate Boeckman and big brother Kaden. On May 7th, their 3 1/2 month old daughter, Ava, passed away at CMH. Ava was also diagnosed with HLHS and was status post Norwood, but was yet to come home due to some trouble of getting off the ventilator. Earlier this week however, she was successfully extubated, and things were finally looking up for her! But on Wednesday, things took a turn for the worst. I met Amy and Nate thru her sister-in-law, who somehow came across Tyler's blog. Once again, there was an instant connection because there we were, both parents of a child diagnosed with HLHS. There is nothing better than being able to talk to another 'heart parent'... especially of the same CHD. Last week when we were in PICU for Tyler's Glenn, I was blessed to be able to meet Ava in person while talking to and learning more about Amy. Come to find out, she and I have more in common than just HLHS kiddos. Let me just put it this way... it's a small world. Kaden and Ava couldn't ask for a better mother! She is such a wonderful person. I wish you and your family peace as you make it thru this difficult time. (((HUGE HUGS, MY FRIEND, HUGE HUGS)))

First full day home

Well it started out as a pretty cruddy day.

Last night, Tyler was constantly fussy and barely slept at all, which is totally unlike him.

Then Jarrett woke up at 5:30am unhappy and not wanting Daddy to go to work.

Around 9am today, Tyler started getting irritated and screaming for what I thought was just 'no reason'... BUT there WAS a reason.

Come to find out, the Portagen formula recipe the discharging nurse told me to use was totally incorrect. She was having me prepare it to 30-kcal which is NOT right! Especially for an 8 month old baby.

When the doctors started him on it in the hospital it was only prepared to 20-kcal. So as he was getting the 30-kcal feedings last night and this morning, it was just too rich for his gut, causing him to get a severe upset tummy.

I finally got the situation resolved after calling the Nutrition Department at Children's Mercy Hospital today. The dietitian who helped me was appalled with the situation that resulted from the discharging nurse's lack of knowledge on Portagen and the fact that his dietitian while inpatient didn't do their own discharge.

However, since about 4pm this afternoon, he's been back to his happy self again. In my opinion, a mistake like that shouldn't have been made.

OMG! We're HOME!

I absolutely cannot believe this! 6 days post-op!

And the best part is the hospital provided enough Portagen formula to get him fed for the amount of time we'll need to be on it due to the chylothorax.

We go back on Thursday to get his staples out... other than that he had a good result on chest xray this morning and he also had an echo which showed the new physiology of his heart working just fine!

I captured these pics right after we got home before we took a nap-
I don't think either of them could have been any happier!

Update for Sunday, May 4th. . .

All numbers from Tyler's blood draw from yesterday came back in the 'normal' range! WOOT! He's been getting a daily chest xray each morning and they seem to be improving... another WOOT! The Chylothorax is completely under control now (not gone, just under control) after a day and a half of being on the Portagen... so CV surgery nurse, Lisa Laddish, pulled his Blake drain today! Last WOOT! The drainage coming from his chest had slowed enough and cleared enough that she said it was time.

He isn't in as much pain since it was removed and he's been so happy again today. What a trooper! No word yet on when we'll be able to come home, I think it's just a matter of time now to monitor daily chest xrays and find enough Portagen formula to send us home with until we can make the $$$ purchase ourselves.

Thanks for all the support! It's been a blessing to know he has a bunch of people praying and has really given me reason to smile when he has those 'bad days'...

Picture overload!

Ok, so I took a bunch of pictures of him today... aside from the Chylothorax, he felt great today! (And it showed!) Enjoy!

Hangin' out!

Tyler continues to do well pulling the extra fluid off of his body. He is looking more and more like his old self again. CV surgery nurse came by yesterday to remove his dressing over his chest staples and he was taken off of all monitors this morning. The transport team came for a blood draw this morning to check electrolytes... since he's a hard stick, the lady from lab didn't want to try. And as far as the Chylothorax goes, it seems like his body is adjusting to the Portagen formula! The drainage from his Blake isn't as cloudy as yesterday. Andrew and I listened in on Cardiac Rounds this morning, and it was explained to us that as long as the drainage continues to clear up and then eventually stop all together, the Blake drain will be pulled. However, we'll continue Portagen for 3-8 weeks to give the injured portion of his lymphatic system time to heal.

After that time, we'll be given the 'go-ahead' to restart his Enfamil w/ Lipil formula knowing he'll have a chest xray after about three days to see if it's collecting in his chest cavity again. If the xray comes back clean, then we know the lymphatic system is healed... but if the xray shows fluid, then we know we have to get it out and start Portagen again. So we'll see how this all pans out. I just know that my lil' guy will get thru this!

Other than all of that, he's still a great sleeper at night and loves his silky blankie. Good thing we brought it. He's feeling really good today it seems; playing with the few toys we brought, starting to laugh again, and move his arms upwards as if to say "Pick me up!" We've been given the ok to start holding him again to get him moving so nothing settles in his lungs or chest cavity.

I'll post a few pictures later on tonite as I'm going to get him dressed for the first time since surgery. What a fun day! I hope it continues to be such a positive day for all of us!

A Prayer for Healing and Hope

Almighty God, we give You thanks,

for You are the Creator

of all life and goodness.

We praise You for the world

You have made for us

to build up and enjoy.

Loving God, help us to be

faithful heralds of Healing and Hope.

Grant us the awareness of the healing

needs of those around us

and the compassion to respond

willingly to those needs.

We ask this through Christ,

our Healer and Source of all Hope.

Amen

Not a good day . . .

We were moved up to the Heart Floor yesterday late afternoon, because Tyler actually peed a few times; and for the most part, his recovery thus far had been rather uneventful. Unfortunately, Tyler has made me a bit of a skeptic when it comes to doctors and nurses try to comforting me with odds… Because if it’s a complication that can happen during the recovery process, Tyler will want to play with it!

After yesterday, a day spent of gradually introducing his feedings again, this morning Tyler’s nurse noticed a cloudy substance draining thru his Blakes. It is being coined by his surgeon and attending CV surgery nurses as Chylothorax. This is a risk of open heart surgery, but whether or not it occurred during the actual surgery process or not is unknown. One guess could be that it is the result of trying to get a central line in and they must have pierced a lymphatic vessel. The second guess could be that during surgery, part of his nearby lymphatic pockets were ‘nicked’ causing fat from Tyler’s formula to drip/seep into his chest cavity.

Chylothorax is a condition that results from lymphatic fluid (Chyle) accumulating in the pleural cavity. Its cause is usually leakage from the thoracic duct or one of the main lymphatic vessels that drain to it. Simply what’s happening is this: Chyle, a form of fat found in your diet (in his formula), is draining from the Blake drains in his chest (which means it’s starting to surround his lungs) and it’s causing him to experience a diminished lung capacity, making it harder to breath and keep his oxygen saturation above 70.

From what we’ve been told and what information we’ve read so far, is that it could take anywhere from 1 week to 12 weeks to fully heal from this and that it can be hard to manage.

To correct Chylothorax, he has been placed on a formula called Portagen. The fats found in Portagen have already been broken down, making it next to impossible for the fat to continue seeping thru. It is unknown how soon or how long it will take Tyler to recover from this condition, but should recover nonetheless – eventually. Hopefully the vessel that is injured will repair itself quickly and we can resume his regular formula again.

I am unsure of the exact amount of liquid surrounding his lungs right now that’s just waiting to come out, but we’ll know if the Chylothorax is getting worse if his weight jumps significantly overnight and/or if his respirations continue to rise.

Please, please I beg of you all, to keep my baby boy in your prayers to make this condition go away. Personally, I’d much rather be back to just praying for pee. It’s been a very stressful day… God only knew this day was coming.

Pray For PEE!

The only thing holding Tyler back from moving to the floor, is his lack of urination. He's still very swollen and puffy, and needs to pass the excess fluids, but the Doctors aren't too concerned yet - they just think it's going to take a little more time and are trying to think of ways to help pull the liquid from his body. Right now, Tyler is only urinating about once every 12 hours. They're hopeful that will increase as the day moves on.

His blood pressure is still looking really good and they've now started feeding him!



Trish