Home again ...

After 9 days 22 hours and 48 minutes we have been discharged from the hospital. This is one day short of our first discharge which was exactly 10 days 22 hours and 6 minutes.  (I was going over my discharge paperwork and it's right there on the first line of the patient summary, not that I was counting or anything.)

The doctors think that they have a pretty good balance and figured out the right diuretic regimen that we can go home and check in the clinic regularly to monitor any possible fluid.  Today's x-ray was good and Dr. H allowed us to go home.  Our medicine regimen may seem crazy but here it is

Morning:
1 baby aspirin
1 Multivitamin with iron
1/2 tablet of Aldactone
1mg of Metolazone
2mg of Bumetanide
10mls of Potassium Chloride (supplement that is depleted due to the two above)
3mls of Sodium Chloride (supplement)

Evening
1/2 tablet Aldactone
1.5 mg Coumadin/ Warfarin
1mg of Metolazone
3 mls of Sodium Chloride

We are back on the 930 ml fluid restriction and fat free diet and I am to weigh each diaper to track ins and outs to make sure Jasiu is not retaining water and report it at clinic.  For my own sanity I will also check temperature daily and weigh him as well, If I only had a blood pressure machine for children it would have been same as the last 2 days we had at the hospital.

Due to the IV Jasiu had in his right hand for 7 days he now prefers to eat with his left hand but he is coming around to the right again slowly. He loves being home and we hope to keep it that way.

We go back tomorrow for an INR check and a quick check up. I would love an x-ray to confirm clean lungs but we will see if they order it.  We are praying for the fluid not to return and continued healing and recovery.

Thank you so  much to all who have prayed and helped us throughout this roller coaster. We are far from over, but we came over this bump and we are still hanging on!

Tubeless... (again)...

Jasiu's chest tube was pulled out today, again.  It has been in for 7 days and today is our 9th day in the hospital after being readmitted, so that makes 21 days in the hospital for our Fontan recovery.  Jasiu went home for the first time after being in the hospital for 21 days after he was born, so this is now beating our record for recovery time. I know it's a lot of numbers, but for some reason I have the urge to quantify everything, just another part of my OCD.

Today was also a good mood day for Jasiu, part of it was versed (happy drug for the chest tube removal) and part of it was that the chest tube was removed and he feels much better. But the best part was that we have had many visitors lately. We have had grandma here a few times, my sister, Emily and my cousin surprised us today. Visitors really liven things up around here, this 200 sq ft room and cartoons all day long can get pretty mundane, our strolls around the hallway aren't that exciting, but we take a morning stroll while our bed is changed and an afternoon stroll after nap time.

Health wise, the x-rays looked great last few days, and diuretics were altered today as well however we are quite positive on our ins and out's that I think they will slightly increase them tomorrow and continue monitoring I's and O's and x-rays. The D word was not mentioned yet and we are not even asking the doctors because we want to be sure we are ready for the H word. No rushing this time.  We restarted the cumadin and we will be monitoring INR numbers again as well.

Thank you for all the prayers and support.

Maly gorol

No tube = baby yoga time

Weekend Update

This weekend started out great for Jasiu, he got some new medicines, it made hm pee and lose all that extra fluid, but his restriction was raised a little bit to 1,100 mls to compensate, but the first day with the increase in meds Jasiu was 700 negative !!! That is A LOT for a little 2 year old. Saturday and Today he is fairly neutral and his x-rays look excellent. Saturday he drained only 10mls from the chest tube and today was very minimal as well, I'm sure it's less than 10 but we have to wait till 7am to know for sure.  According to Dr. H they may pull it out tomorrow (Monday). Labs looked good except for potassium was low, but with such heavy diuretics that was expected.  Today when I came to see my boys in the morning, I met Jasiu the prune. His eyes look really sunken in, to the point where when he's sleeping the top and bottom barely meet and probably because of this drying out and the meds he did not eat any ting all day, only fluids. As a result we have a very weak boy who is not even in the mood for playing, his ciupagi, or hanging out with his sister in the playroom.

I feel so bad for him, as he can't seem to catch a brake. When his lungs were full of fluid and draining like crazy he was awful on the inside but  in a great mood and playing like nothing ever happened on the outside. Now he's dry as the Sahara but his mood is awful and he looks so sad. He looks like he lost about 5 pounds since the surgery, may not seem like a lot  but on a 2 year old you can tell.

So if they pull the tubes tomorrow than we should stay for another 2 days for monitoring and switching all diuretics to oral, just to make sure he can tolerate them  and that they are as effective at the doses that they are via iv.  After that we continue to monitor his intake of fluid, his behavior and how he looks on the outside, as it is a pretty good indicator on how he is on the inside.  We continue the FF diet and will have very frequent x-rays post discharge given his current history.

Thank you for all the prayers and please keep them coming, especially for fluid not to return and for appetite and mood to improve. It is so heart braking to see him this way and I feel that it's rubbing off on my mood as well and I'm starting not to like the person I'm seeing in me. I wish I could speed things along and am impatient and anxious, which turns into negative behavior in general. I hate feeling when I think  I'm going crazy :(

Also, this was our first "holiday" that we spent in the hospital and I'm not going to sugar coat it, it sucked, big time BUT I still do have my children, they were able to be together in one place at least for a little while and even though I lost my temper once, I still love them and my kids are the best thing that ever happened to us.  Emotions were just flying like a tornado everywhere. I can't wait to be home.

Big Guns

Yes, our cardiologist referred to them as the "big guns" of diuretics. Jasiu has now been switched from Lasix and Diuril to Bumex (increased dose of 2mg) and Mykrox (Metolazone, max dose for his weight 2.5mg).  Basically they want a Jasiu  PRUNE and not a plump little Jasiu that we have.

Despite his previous 3 diuretics, chest tube and fluid restriction Jasiu still has been on the positive side for 4 days when they count his I's and O's (Ins + and outs -  in fluid). So these Big guns have to work.

I think that this new regimen is working so far because Joe reported to me that we have had 3 good diapers in about an hours time, so now we watch him very closely so that we don't overdo it and cause dehydration. It's a very fine line we are walking here but this morning  Jasiu had Dr. H scratching his head, which Jasiu thought was hilarious,  when he analyzed his chart from the past 24 hours, so he made these drastic changes and he (we all) hope this works.  The drainage out of the chest tube still has been 70cc's for 24 hours which is still significant and the tube is not coming out in the near future.

I have found a helpful description of pleural effusions that I found on line  if you are more interested in learning about this fluid we are battling.

Cleveland Clinic - Pleural Effusions description.
Pleural Effusions -Educational Video

A side note: Jasiu is NOT considered in "heart failure", his pleural effusions are a complication post Fontan surgery. Both links first "cause of PE" lists heart failure, but I want to ease some of the reader's concerns. 

Other than the PE, Jasiu is feeling really well and in good spirits. He is the hit of the floor, flirts with all the nurses, blowing them kisses, playing in the play room, strolling the hallways, playing kickball, watching cartoons and enjoying all of the attention. He likes being the boss and tell me which way we will be turning during our walks.  Obviously he does not like his IV medication, blood draws, x-rays, blood pressure check or when any medical staff listens to him with a stethoscope. Ironically cries the most during the frequent temperature checks (which is under the armpit and is the least painful thing they do to him).

I am enjoying my time with Jasiu one on one, but miss Emily and our home so much. Emily is in good spirits as well, she is getting so much attention from our family and they take good care of her but I can not wait until our entire family is under one roof for good.  It also looks like our Mother's Day barbecue will be in room 2072 this year.

Washing those stinky feet (5 days no bath = stinky boy)

In the play room

Playing ball with dad and munching on his Fat free french fries -
that containere behind Jasiu's arm is the chest tuebe drainage canister

Superman Munching FF pringles

Two steps forward one step back ...

Today I feel like we took a big step backwards in this Fontan Journey. It was really tough to hear that he will need to go through another procedure to place the chest tube, but the first and second and third dose of lasix, change in medication to stronger diuretics and more aggresive approach was not doing the trick even wih 3 days of IV diuretics.

Hopefully this is what Jasiu needs to get on with his life. He was not a happy camper when the anaesthesia  wore off  so we once again battle a groggy baby and in a lot of pain. It's hard to see but in the long run, this fluid was not going to go away by itself.

So now we pray that the fluid goes away and stays away and that our happy baby comes back soon.
Thank you for all your help.

Back at Hope

I am sad to report that we are back at the hospital being admitted for IV diuretics. I started to notice puffiness on the eyes Saturday night and on Sunday I gave an extra dose of lasix and the eyes were still puffy. We were supposed to be at the hospital for an INR check anyways so I called them with my report and they said to get an x ray just in case. Well mommy intuition was right the right lung looked half way filled with fluid. The doctor even showed me to compare to Fridays x ray. Hopefully we will be able to get rid of it with the diuretics and Jasiu just needs more time to recover so that the pesky fluid stays away. This seems to be one of the most common complication of the Fontan. They don't want to test if its chyle or just regular fluid just yet because we have been on the fat free diet since Thursday. I hope that chest tubes are not in our future. Please help is pray that they are not. We are spending at least one night maybe two.

Home

Day 12 post Fontan and we are all home under one roof. Jasiu's blood work came back good from the morning draw (which took 3 times from the central line IV, mind you) the main concern was his INR level which is a test of blood clotting. Because Jasiu has a gortex tube for blood flow now, he is more prone to clotting which could cause a stroke, as a result he will be taking a baby aspirin and a blood thinning medicine, Cumadin (warfarin). Jasiu's result was 1.4 and they were happy with that so we just needed one final x-ray and we were out of there, well 3 hours later (hospital time) we were on our way.  Jasiu sat in the wagon, impatiently,  all dressed and ready to go for about an hour waiting for our discharge papers.

We finally made it out the doors and went home, about 10 minutes into our 15 minute drive both kids were passed out. Jasiu slept for 4 hours uninterrupted and Emily 3. I think that the hospital exhausted them both, when Emily woke up, she looked panicked and quickly asked "where is Jasiu?!?" When I told her he was upstairs sleeping she needed to go check because she didn't believe me. I guess she really loves him after all.

The rest of the night went OK, we have 3 big challenges in the next 6 weeks.

1.) Fluid restriction ( 930 mls / 31 ounces per day)  If not distracted he's begging and screaming for something to drink.

2.) Fat Free Diet - ideally zero grams of fat, at most we can have the .5gram a day from the 99% fat free hot dogs or lunch meat turkey breast that is on the market (one brand of each)

3.) Activity restriction - this boy thinks he can already conquer the world but the reality is his chest was just cut open and needs at least 6-8 weeks to heal. The first night we were home he tried to climb a chair and leaned his belly on the seat and tried to pull up and then screamed in pain, we didn't get there in time. For a pretty independent kid, this is a biggie. All he wants to do is go outside and play, run and most likely fall. When he falls on his knees and breaks the fall with his hands, it hurts him as well, I found out today :(

Today was our full day at home and we are still trying to get his fluid breakdown for the day so that he feels satisfied, it wasn't as bad as yesterday and we are still trying to figure out ways to distract him. We found ice cubes satisfy him for a good 20 minutes and also frozen yogurt bars do the same trick.  He is taking to his FF foods, and tomorrow I'm making FF waffles with applesauce instead of butter/fat, it will be interesting to say the least.  He also got a much needed bath which he enjoyed SO MUCH. I did his "vitals" today and found that Jasiu was running a slight fever, 99.5-100.1 F but we should call them if it gets to 101 at least. I have heard of many kids running a low grade fever after they go home and it was "nothing" and resolved itself, so we will keep an eye on it over the weekend and bring it up on Monday.

Monday we have our first INR check at the clinic and Friday is our 1 week follow up with Cardiac Clinic, X-ray, blood work and INR check.  So we will have a busy weak but still trying to stay clear of crowds and germies in hopes of a quick recovery.

We continue to thank you for all the prayers and support.

Big Update - Day 9 and 10

On Wednesday, day 9 post Fontan the team decided it was time and Jasiu was ready for having his chest tubes pulled out. Before that happened though, we already had a pretty good day. Jasiu woke up in a better mood and wanted to go for a walk and played with bubbles and even walked a little bit (as tricky as that sounds) with the chest tubes in... all before morning rounds (here on 2nd floor morning rounds are around 10am). During rounds we learned that the output from the tubes was low enough to have them pulled out. We also learned that Jasiu has our team a little stumped as it relates to the fluid that was draining from his chest. The pleural effusins (in his lung cavity) tube was a completely different color and consistency as the mediastinal (in the general heart area). It looked almost exactly like chyle, but two tests confirmed that it was not technically chyle since the lipids/fat content though elevated, not at the full chyle level. Additionally the mediastinal tube produced a completely clear discharge, not one cloudy drop. The team decided that it is best to put our little man on a fat free diet for about 4 weeks to let him heal so that the chyle does not become a problem. This most likely a result of  injury of the thoracic duct during surgery and instead of absorbing the fat from foods, the body leaks it our around the lungs and chest cavity, so it's a pretty serious complication, but pretty curable one.  From About Kids Health .org info on Chylothorax

Link to additional information about Chylothorax

What is a chylothorax?

A chylothorax (say: KY-low-THOR-ax) is a build-up of fluid in the space around the lungs. The fluid, called chyle (say: kile), is a normal fluid that is made when the body digests fat. When it builds up, it puts pressure on the lungs and makes breathing more difficult.

Treating a chylothorax

The doctors often drain the extra fluid from around the lungs with a chest tube. Sometimes, that is all that is needed. But if the body keeps making too much chyle, your child may be put on a special diet. This diet will lower the amount of chyle your child’s body makes. This will help prevent a build-up from happening again.

Minimal fat diet

Your child’s doctor or dietitian will help you with the details of your child’s diet. In general, your child should avoid eating fats. The less fat in your child's diet, the less chyle the body will produce.  

 The chest tubes were pulled at 2pm by the cardiac surgery nurse practitioner. We opted to stay in the room while she did it, it wasn't pretty but I never had issues with queasiness or blood so I was fine, Joe stepped aside for the pulling. It wasn't really that bad, they sealed up the holes and put dressing over it. Jasiu was still on the versed and was pretty loopy for a little bit, than the dietitian came in to explain this whole diet thing and at some point we wanted to keep Jasiu occupied so we gave him a lotion bottle but he started to get too messy so I took it away, bad mommy. I think the combination of me being mean and taking it away, the versed and all the bottled up emotions from the past days where he had really no freedom or comfort to throw a tantrum, Jasiu lost his marbles BIG TIME. I mean screaming, kicking, biting, hitting his head on the crib, thrashing.. I have never seen him that way, EVER. It didn't stop for 10 minutes after Joe and I tried to calm him down so we called the nurse because I had no idea what to do and he looked like he could have seriously hurt himself so Joe and then I became Jasiu's straight jacket. The PSHU doctors came in and though it could have been a reaction to the versed, the ordered a drug to reverse the versed and still nothing, another 10 minutes passed and he is still kicking and screaming, pulling iv's, etc. He kept his color and oxygen saturation's during this whole time but from the screaming his eyes started getting puffy and we almost gave him benedril but then someone, have no idea who, suggested we go for a walk and after a 30 minute episode, he calmed down. It was pretty scary but maybe he just needed to get all that out of his system. Then his dinner came and he actually wanted to eat.. only peas and katsup, didn't care for the corn, carrots or beans, only peas but after so many days of No No No, we took what we could get. His mood brightened up and he was playing and for the first time (besides on Sunday when he had a lot of friendly faces visit him, my sisters, and when Emily was here briefly) I saw my boy back. He was playing his violin and even wanted to dance, but the IV in his foot made that uncomfortable. He kept his sats up so we were able to take the nasal cannula off, even though he was not connected to the oxygen for almost two hours.

He then took a nice long nap, took his meds fairly well and we had a nice restful night, for the first time in 9 days the nurses let us sleep for 6 hours straight.

Thursday he already ate almost a whole yogurt and a quarter of a banana for breakfast, some chicken and vegetables and pickles for dinner. I think as he eats more he won't be as thirsty but he's a little more whinier about the drinking.

The plan is to make sure that we have no fluid build up and and sats are kept up so we are still on the diuretics and supplemnets but hopefully the bananas, milk and ketchup keep up jasiu's levles of potassium, calcium and sodium up so he doesn't come home on these supplements, believe me ketchup tastes better than 5 mls of salt water, potassium chloride and calcium chewable(that's what he's been taking twice a day for a few days now). We will have an echo and chest x-ray and we keep up the fluid restriction to 930 mls (31 ounces) per day.  If we do well for the next two days, we may be able to go home on Saturday.

We keep praying and thank you for all the prayers for a full recovery so that we can have our spunky boy back full time.  The best medicine so far have been the visits from Emily. Dr. Vanbergen at rounds on Thursday said, make sure you get Emily back here often, so she has been visiting. She is actually having a blast in the hospital, chatting up all the doctors, telling them that our rocking chair is "junk" (it's all cracked up on the seat). She told one of the nurses when she turned around that she can see her butt, thought it was the funniest thing when we accidently ended up on the 4th floor and couldn't find john, even smacked Dr. Vanbergen (cardiologist) on the butt and thought it was the funniest thing. She has been a blast to be around here. She also did a lot of fun things with her aunties, grandma and I took her to Chuckee cheese yesterday for a little bit (it's a few blocks from our hospital).  She truly is a champ through all of this. Yesterday Emily and John also visited the play room here at the hospital and Emily painted Jasiu a picture for his room.

Additionally as we near the home stretch here, I think I need to send a special thank you to our whole support system, i.e. our families who helped so much during the last two weeks and all those praying for our sweet Jasiu. Emily was in great hands through all of this time away from her normal and she had a great time with my sisters and both grandmas. We are so blessed the they live so close and we can get someone to be with her on very short notice because in hospital life things change quickly and unexpectidly.  We truly love you all.