Day 8 - Patience

We are losing our patience with Jasiu, each other, this hospital stay and even Emily . He no longer wants to eat ANYTHING, does not want his meds or even a wagon ride. We are still draining and they are testing for chyle once again.

As soon as I wrote this I'm feeling awful because I know this isn't the worst that can happen yet I find myself in an ultimate low. Praying for strength for our family to weather this storm in peace.

Hello from Hope 2

Saturday April 26th, 6 days post Fontan, we finally made the move to the 2nd floor of Advocate {Hope} Children's Hospital. Although we were technically "floor" status we were up in the PSHU


Saying bye to one of our favorite cardiologists in the PSHU Dr. VanBergen

 because there were no rooms available downstairs for two days ! The move was tough on Jasiu since he still has the two chest tubes (more on that later), oxygen, pulse ox and two iv's and in 6 days we accumulated about 6 bags of "stuff" that had their own wagon for transport.  The room on 2 is private, as in we don't feel like we are in a fish bowl as in the intensive care unit, one wall/ door is glass because the patients usually require constant 24 hour care in the PSHU post op and for 6 days we had zero privacy besides a curtain that I could close half way when I attempted some shut eye during the night shift.  Before we made our way down, we had to get vitals done, than we go downstairs and again, vitals, weight, and get settled. This wore our little man down and he took a long nap. His mood was still quite gloomy with a few smiles few and far between.

This night Jasiu spent the night with dad and I got some much needed time with Emily and I finally slept in a bed for the night. It was quite difficult to let go of my overly obsessed psyche and allow Joe to take over. I have had full trust in him of course and they did great. I called it their boys night in. Theywatched some hockey and Elmo and went to sleep. In between vitals every 4 hours, iv meds and pull out sleeper sofa,  I'm sure he got some shut eye.

I woke up to a very fun picture of my boy smiling and playing with his toys. When I got here after church, Jasiu was eating some fruits and all smiles and giggles. They had a great time with dad. It brought tears of joy to my eyes that after a week, despite the chest tubes, he is finally in a better mood. This kid continues to amaze me with his strength.  Dad left, we had some lunch and a small bottle of milk and Jasiu is out for his nap. 

The foot has to be hanging out between the rails,
probably why that IV barely works

Medically Jasiu is doing well, but he is still draining fluid from his chest tubes at 6 days post op he is still draining fluid from his lungs and chest cavity. There was only a small decrease over the last two days. The plan was to hopefully remove them tomorrow if he was draining only minimally but I think that might be a long shot after I saw last night's total numbers. We definitely do not want to remove the tubes too soon because if the fluid is not done accumulating around his lungs and heart this could be draining in the body and detrimental to his recovery. Also it is much more difficult on the baby to put the tubes back in if needed than to keep them in until they are really ready to be out. On the good side though, Jasiu's mood is good that means we are managing his pain very well. He is on Motrin around the clock every 8 hours and on Lortab (Tylenol with Codeine) every 4 hours but we have been able to stretch him to every 5-6 hours and seems to be tolerating it well. This one makes him drowsy and sleepy so we are trying to see if he is hurting less and less to slowly wean this one out of his routine and system. To help with the fluid removal Jasiu is on three different diuretics and one of those is still admninisterd through the iv for quicker effectiveness.  Hopefully by the time we come home we can cut one out.

Until then we will hang out at Hope continuing to heal and get back to ourselves.

Quick Upate

As of 7am this morning we are technically "step down" status and should have been transferred to a bed on 2nd floor instead of the PSHU (Pediatric Surgical Heart Unit). However, there were no beds available downstairs so we stayed the day and night up here on 3 where mommy and Jasiu are most comfortable. Not that we don't trust them on 2 and 2 is a great place because it's one step closer to home, but it makes me nervous to go down there, especially with chest tubes still draining... and draining they are still draining, though it is starting to diminish and not increase. They are not specially trained to handle cardiac kids, but as I learned yesterday, the Nurse Practitioners are actually working on providing basic Cardiac nurse training sessions and I was assured that I should not worry. Apparently we can go anywhere with the chest tubes except for home (he hospital that is).  Since the orders were put in this morning, I think we will move tomorrow minoring after rounds.

In other news, today Jasiu was on negative fluids today for the first time. They basically measure ALL his liquid intake (milk, juice, water, even meds) less his output (wet diapers) and net the two. Currently the desired result is a negative. He has been positive for 2 days and they were not pleased about it. Another diuretic was ordered and it helped with the peeing.

We still have the following connected to Jasiu -  2 iv's, central line, 2 chest tubes and blood pressure cuff. As far as medicine goes, he is on Lortab every 4 hrs, Motrin every 8 hrs. 2 different diuretics (Lasix and Diurell (sip?) and this afternoon we added calcuim tablet, potassium liquid and something basic because his blood was to acidic or the other way around.  (the last three are a direct result of the major diuretics, in addition to draining fluid, it's draining deferment minerals from the body.  Additionally they will bring us some miralax because still no bowel movement and since Sunday and he has been eating fairly well, plus we were on that at home.

Hopefully tomorrow we will migrate downstairs and then next stop, Healing at Home !!!

Update - Day 3

Today is Wednesday and we are over the 48 hour mark post surgery. I must say the time after surgery is moving much quicker than the time in anticipation of surgery. There was no update yesterday because it was a tough day but overall still moving in the right direction.  As soon as Jasiu woke up he didn't want anything but his milk, juice or water. Our center restricts fluid intake post Fontan for at least 36-48 hours. The first 24 hours were decent he asked for it a few times but was satisfied with the pacifier dipped in water and he was still so out of it that it was bearable. The next 12 hours he was pitiful. It was the saddest thing that we could not fulfil the one need that he had. He was thrashing his legs, screaming and almost rolling over to break out of this joint and get something to drink that we had to go up on his pain med and added versed (happy drug) for a bit.  In the meantime, his arterial line coming out of his groin that was we were relying on blood pressure and blood gases seemed to provide "goofy" numbers  because clinically he looked great and all other numbers were just fine. So the nurse investigated and turns out that the tip of the line was twisted somehow and after numerous attempts to fix it, the team decided to pull it out.  It was great that we were pulling lines out already, however it was too soon post surgery and this type of line to be put in is a surgical procedure in itself, so this was bad, but there was no other option for this particular line and we had to wait it out an see what was going to happen without it.  Thankfully, nothing happened and the blood pressure reading is continuously coming from a BP cuff on Jasiu's leg, a little more annoying to him, but still OK and gasses have to be drawn from the Venus line, so it's a different metric that they have to compare it too  but they are still good.  Because of this ordeal, Jasiu got a hefty dose of the versed (happy drug) so that he wouldn't hurt while the tired to fix it, he was sleepy for a  better part of the afternoon on Tuesday.

After he woke up, he was madder than ever and his thirst peaked at that point. So we kept asking if he can have some clear liquids at least to calm him down.  They finally budged (only because it was last resort and he was doing well thus far) at around 8 pm and he got 2 oz of pedialite. Little did we know that this limited amount was just going to make our sweet boy just MADDER ! His stomach tolerated that and half hour later he got 3 oz of apple juice which did not satisfy him either. It was calculated that because of the IV fluids that he got during the day he was only allowed 8 more ounces for the next 12 hours, so we split that into two bottles of milk 4 oz each. It didn't completely quench that monster thirst but it helped and he got a fairly good rest during the night, which means mom and dad got a few hours o shut eye as well. Me in the waiting room, Joe in Jasiu's room (only one parent allowed to "sleep" in the room)

Starting at 7am today his full day allowance is 31 oz = 930 mls of fluid. Based on Jasiu's weight this is apparently 80 percent of his daily requirement. It seems like a lot but because of the Lasix, diuretic medicine to make him urinate and help with the fluid retention, it's still not that much.  The happiest he has been post op was when he was finally offered a full bottle at 7am.  The tricky part is to space out the liquid so that he doesn't get all of it during the day because than he can run out during the night.  It's a very delicate balance.

Other than drinking issues his mood is a little better but still has no interest to play much. He did hold a marker and tried to color but was just too tired to hold it for too long.  He is a little bit happier because the folly catheter came out so now he can pee in the diaper. Additionally, his Fentanyl and Versed (continuous medicines for sedation and pain) were removed as well. Jasiu is taking one oral pain medicine, Loratab (sp?) and one IV pain med, Toridol (sp?) Coming off of continuous pain med to oral medicine that wears off was a difficult transition and did not make for a happy baby on Wednesday morning. He also took his multivitamin by mouth and chewable aspirin. As far as food goes, he ate 3 Gerber puffs, about a spoonful of applesauce and 3 spoons dipped in mashed potatoes and gravy, one spoon of pudding and some fruit puree. Nurses are calling this a successful eating day at this stage in recovery. We were informed that the "drinkable" yogurt is not part of the restricted fluid and he downed two of those for a total of 6.2 ounces.  Such a trooper our guy is. We are so proud.

I also got to hold him for a little bit today. They actually want him to move around to loosen up any fluid that could be building up. It seems awfully uncomfortable to move with the two chest tubes. Once Jasiu figured out that being on my lap is not going to get him to break out of here he kept pointing at the crib to be placed in, so we did.  He doesn't seem to be in too much pain on the bed but I feel like he's getting restless leg syndrome with all the leg twitching he is doing. Once he gets comfortable he's out like a light.

The plan for tomorrow is to continue to work on maintaining the right amount of fluid intake, work on eating more solids and to loosen up as much fluid around lugs to see if the tubes are draining less and less and to see if they can come out. My prediction is that at the rate he is going, he may lose them by Friday, but only time will tell and Jasiu (and all these babies) make their own rules, no set "standard". I say, as long as they are progressing in the recovery, that is all that matters.

Late update on this evening, Jasiu is having pee pee issues.  His folly came out today and he only had one wet diaper which actually I witnessed getting wet and it was visibly painful for him. He did not want to urinate. 6 hours later and two doses of diuretics and still no wet diaper, so they did a bladder scan and found over 200 ml's (that's over 6 ounces) of urine that he was holding in. Apparently it hurts him to pee and he's afraid to do it. I was about to post the update and Joe calls me from the waiting room where I was going to post and then take a few hour nap while he was holding vigil. He called me just in time because the nurse was about to stick another folly in to get the urine out. I went into full force to try to avoid a step back in the wrong  direction and give Jasiu a chance to do it on his own. He was due for his pain med so we gave him that and since the plan was to put a cath in, they gave a dose of Versed. I suggested as a last resort to give him 20 minutes to see if he is sleepy and and the meds kick in maybe he will relax the bladder and pee on his own and it worked ! He peed and peed and through the diaper it went. The scale said it was about 130 mls and the rest was on the sheets so we had to change them bu they were satisfied and held back on the folly. So let's pray that he pees through the night and his little pee pee heals quickly since it's fairly tender as I was wiping him with a wet wipe.  

We continue to pray for a smooth recovery. God is good and he knows what he is doing, we may not always understand the purpose, but we must take it in with stride.  We also thank  everyone who is supporting us in continued prayers.

Post Fontan !!!!

still waiting patiently

Hello from PSHU (Pediatric Surgical Heart Unit) at Advocate Hope Hospital. God is so good. We are hours post Fontan and doing very well. The day started out rough with some waiting room anxiety as our surgery time was severely delayed, Jasiu was getting hungry and agitated due to hunger, but he took everything like a champ and we finally got the versed (happy meds) at 1pm and by 1:15 he was in the operating room playing peek a boo with the anaesthesiologist (or so we were told). (we were scheduled for a 9:30 am surgery)  Then he was put completely under and went to sleep. They got an iv in the foot and one spare one on his left hand, but that one is not being used so it's not bothering him too much.  Our nurse during the operation was super super nice and came out almost every hour with an update. Jasiu came on the bypass machine (heart and lungs machine) very smoothly, than Dr. Illbawi did the Fontan (major portion of the surgery) and then came off the bypass very well also, with very minimal blood loss and his count was good, so they did not need to actually use the blood during the surgery, which is extremely good, however they are still keeping the blood around one more day just in case he would need the transfusion in the next 24 to 48 hours. They closed him up, stabilized in his room and we finally got to see him at 6pm. So we were away for only 5 hours, but it seemed like forever. 

the Bair hugger cooling machine

Jasiu came out of surgery extubated (off of the ventilator) and on 3 liters of regular flow oxygen and his saturation's are around 99-95 (mostly 99!!!). The pressures were good and they did not need to do a Fenestration (small opening in the tube they placed to release pressure). This is such a blessing to see. He is a bit puffy/ swollen around the face and neck and that is to be expected. He is only on dobutamine (blood pressure medicine) to help his heart with the pumping. Other than that he is on IV fluids and was given some bicarbonates and now a calcium supplement all in an effort to get to a good equilibrium as the body stabilizes after surgery. Hew was still sleepy from the anesthesia so he got the pain/ sedation med at 9pm when he was starting to move and thrash. He's only on .39mg/hour so that is a small dose for now but is probably expected to go up tomorrow, unless he tolerates pain well. Additionally, his temperature was starting to rise slowly, so he got a Tylenol suppository and a cooling blanket, which really isn't a blanket since it's an under body type. Really interesting to see a puffy mat which cooled air flows through out and cools the body. It's called Bair hugger cooling blanket that comes with a little portable air conditioner/heater depending on what temperature they are trying to achieve. Bair Hugger. for more info on this interesting gadget. Blood gasses are coming  back with good numbers and everyone is doing well with his progress. So good actually that as of 11pm he is no longer 1/1 with a nurse and is sharing a head nurse with the bed next door.

Jasiu currently is sporting two separate chest tubes, urine catheter, arterial line, central line, 2 iv's, oxygen nose cannula, cerebral and renal servo saturation monitors, pulse ox probe, his binky and Barney! 

To someone who has never been around this it would seem like but somehow we were mentally prepared to see it. Though it's still not pleasant to look at and seeing your baby boy connected to so many wires, tubes and monitors breaks a mamma's and tata's heart. He was still pretty sleepy so only went for the nasal cannula once and the head monitor once as well but we were able to distract him with Barney and hugging Barney and highlander music seems to keep his hands away from the wires.. for now. 

Dr. Illbawi, our surgeon, did come out to see us today after he was done in the OR (and he had 4 surgeries today) and I couldn't help but hug the man that touched our son's heart yet again.

His first words after Jasiu woke up were for his pacifier and he fell asleep. The next words were for something to drink. He is on a strict fluid restriction for the next 24-36 hours that means he can not drink anything till at least Wednesday morning. I have been warned that this will be the hardest part, not being able to give him what he wants which is so basic.. water...

We decided that to try to avoid having Jasiu freak out if he happens to wake up so at least one of us will stay with him at all times. I'm taking the first shift while Joe went to try to attempt some shut eye.  Baby boy is sleeping so I'm able to type up an update and it's a way for me not to fall asleep. It has been a long day, but it's the least we can do for him, just be there.

We appreciate all your prayers and good thoughts through text messages, phone calls and facebook. God is Good and we are thankful for everything. While we are not "out of the woods yet" we are on the right path so far.

T-3 .. Days till Fontan

Today we had our Pre-Operation appointment at the hospital with Jasiu and he rocked it!  He was such a good big boy and only cried when most appropriate, blood draw and x-ray that is.

We got there early so that he would be familiar with the waiting room and so that we don't rush him, they called us back 15-20 minutes after our scheduled appointment so he was pretty much entertaining the waiting room with his giggles and playfullness.  He even let the receptionist put on his wristband (well only to be as cool as mommy and daddy who sported one as well).

The blood draw was as expected but they got all they needed on the first stick so we were really happy with that and so was Jasiu, relatively speaking. They swabbed his nostril for staph bacteria just to be sure. Then we did a thorough background questioning with me while daddy was entertaining Jasiu. Then the nurse practitioner did a thorough physical to check ears, mouth, etc for signs of sickness and his ears were all clear. That was one of our biggest worries since his chronic fluid in the ears. We had Jasiu's buddy Barney along and Barney got band aids, the NP listened to Barney before Jasiu and so on and so on.. not one tear during the physical, even the weight and listening to heart and lungs. Our big boy even took deep breaths for the NP, which almost never happens.

We got instructions and antibacterial cloths for wiping the night before and morning of to try to prevent infections. Even though we are technically pending results of the blood work, we are good to go for Monday unless something changes with his health. We are quarantined pretty much to the home for the next three days even me, Joe and Emily will be going out minimally to try to prevent catching something in the next three days. Some may say we are going overboard but to me this is so emotionally draining that if we had to postpone it, though it would be best health wise if it was required, the emotional preparations are almost as grueling. You literally can't focus on anything else but this.  Anyways.. I digress..

Finally we signed the consent forms - this is probably one of the hardest things because once again they remind you all the risks and it's hard to face that and then sign on that line, but we do what we have to do.  Then we were off to X-ray and we were done. All that in about 2 hours and very minimal tears. I would say Jasiu is warming up to the doctors and nurses.. until Monday that is.

I will find out on Friday what time we have to show up to the hospital on Monday morning and then we will be Fontaning !

Wish us luck and say a prayer.

Also, I want to thank our direct blood donors for Jasiu - you know who you are - THANK YOU ! It really is a gift of life for our kiddo as the NP reminded us that a transfusion is almost always required with this surgery.

waiting patiently with his bubbles

Comparing their awesome wristbands

walking down to X-ray (insisted on dragging the umbrella himself)

waiting for X-ray