Wednesday, March 28, 2012
In order to understand we must go back in time: "Only 15% of HLHS babies have 2 superior vena cava's," Dr. Spray said pre-op. "There was no second vena cava, everything went fine though," Dr. Spray post surgery. "Theres a huge thing carrying blood right there," echocardiogram radiologist when asked if she still saw the extra vena cava. "It's just a big vein," said a cardiology attending. "Olivia's earlier cath's only showed it to be a small little vein," Dr. Schatner said yesterday. She then proceeded to explain (praphrashed in a mixed up incomprehensible way, but how I understood it):
The large vein has grown since her norwood on her pulmonary artery. It turns out it is growing and slowly it will siphon more blood from the direction we want the blood flowing. Meaning lower sats, until finally when she gets older it has grown so big that her sats would be at a very dangerous level. The only option is to do catheterization number 3 and coil off that vein before it gets too bad.
From my understanding HLHS kids on the path to a fontan circulation, which requires all 3 surgeries to complete, grow these tiny little veins along their arteries (or something like that). Sometimes these collateral veins take too much blood away from the fontan circulation that it gets very dangerous. Olivia has one of these veins that must be coiled off for her to survive now. Her last 2 catheterizations went through her leg, and the last one it took them 2 hours to find her pulse in her leg (very scary). This cath will go through her neck. I haven't had time to research going through the neck vs. the femoral leg artery, but the neck sounds just as scary. I guess the only good news is that we won't have trouble finding her pulse in her neck after the cath.
Typically CHOP likes to wait 6 weeks to bring a post-op child to the cath lab, but the great Dr. Rome doesn't think it is necessary to wait. The greediness to want to get home inside of me is happy, but I am still worried maybe it is too early. I told them we can wait or we can do it now I would trust their opinion. Right now I am waiting to get the call for them to schedule it. If she gets her cath friday and everything goes great, we still might be able to get home before Easter, which would be so amazing.
If that wasn't enough her eating of the enfaport is random. Sometimes she loves it, other times she hates it. Sometimes I have to fight with her to drink it, and other times she'll just drink half of what she needs. With all the diuretics she is on, she needs to get almost 670ml's a day to hydrate and get some nutrition from her formula. Yesterday before she went to bed we were at 450ml's. I figured I would feed her at 10pm, and she took 4 oz, but I didn't think she'd wake up at 2am and 5am to get 8 more ounces. At 5am she didn't want it, but she woke up crying like she was hungry, after a 10 minute fight she took 4 ounces. This morning it was a fight to take 2 and a half ounces. If she isn't careful she will end up in the hospital before her cath and maybe even an ng-tube. AHHHHHHHHHHHH! I just want to man scream.
To describe how I feel right now can be summarized as depressed. In detail I am excited to be going home, helpless about this cath, mad about her feeds, empty from missing my other kids so much, lonely without my wife who always knows what to do. It is like that empty hopeless lonely feeling you get in the pit of your stomach when everything you wanted behind Door #3 turns out to be a donkey wearing a sombrero with a cart full of donkey crap and the audience is laughing at you. If I was a lady i'd be crying myself to sleep every night, as a manly man the tears just don't come, so it just feels like emptiness.
The good news is that if everything goes perfect, she eats well, and her pulse comes back in her neck we might just be able to get home April 4th. Anything past April 4th and the emptiness will be so empty that it could fill a bottomless pit.
Saturday, March 24, 2012
Sorry about lack of updates. Melanie took Nathan on her first camping trip ever, in a tent on the ground. I told Nathan to remember all the good details. They will have a lot of fun. Delilah is with her nanny and her fun cousins. Olivia and I are hearing whispers of discharge.
First, Olivia has been sating in the 71 - 68 range when deep asleep which is not good. Luckily we had a great attending, as usual. The course of action was a blood transfusion then a catheterization. A few days post op her hemoglobin was 17 and yesterday it was 14. She was sating a lot better at 17. So when she got her blood transfusion last night I was skeptical. Turns out once she went into her deep sleep she was *drumroll please* 77 - 79 allllll night long. I was beside myself and wanted to tell Melanie, but she so far out camping she can't get a signal.
It was such a relief to see some good sats and no nurse coming in the middle of the night to put oxygen on her. The other two hurdles have been cleared as well. Her chest xrays look squeaky clean and clear, and the chylothorax has been whipped into submission by the best tasting disgusting low fat formula ever. Enfaport is almost $78 for 10 days and luckily Olivia is drinking it like it is gold. THANK GOD.
I would like to stay in the hospital and extra day to be safe but we have a shared room. We have already had two different suite mates so far and they have been good babies. Last night a poor sick boy moved in with a crazy bad cough. His little brother stayed in the room too, and is probably sick as well. If you can imagine my face when I learned this I was freaking out. We have kept our baby sickness free since November 1st and now our favorite hospital would get her sick buying her a an extended stay. I asked the nurse but there was nothing that could be done. There policy is to not have a sick kid share a room but with no rooms there was no choice. The nurse quoted some DHH policy that it isn't a problem as long as all contact precautions are followed. All nigt listening to that sad cough imaging the germs wafting over the divider curtains into little Olivia scratched up nose. I managed to sleep but it was nerve racking. With all this in mind the doctors would like an extra day but it comes to a question on what is worse her getting sick or discharging her to the RMH and seeing her doctor Monday.
With the complete 180 turn last night and through this morning with beautifully high saturation I was just told by the nurse that it is pretty definite and she was sending our prescriptions down to the pharmacy. Then the dad next door blew all sorts of stuff out of his nose.... Get us out of here!!!!
I am confident everything will be OK and if it is not we will leave our sickness free Harley Davidson Ronald McDonald room and haul butt back to the hospital.
Thursday, March 22, 2012
Yesterday I dropped Melanie off at the airport. It was so hard on both Melanie and I for her to go but the kids needed her at home and Olivia needed me. It was so hard for Melanie especially because she left her sweet Olivia. Even though Olivia hasn't had much time with Melanie these past 2 months you wouldn't know it. Olivia loves her mommy so much and it was like they had never been apart. Even though this whole thing sucks I was so excited to see my wife being the awesome mommy she is.
Upon returning to chop, they had moved Olivia to the step down unit. They were about to give her a strong sedative but olivia's heroic father showed up, pick up her little butt and calmed her down. Unfortunately, we keep getting a shared room. I hope they enjoy my snoring as much as Nathan cub scout pack does. Olivia must like my snoring because she gets so much sleep at night to the soothing sounds of daddy.
The chylothorax is pretty much gone. They pulled her chest tube drain this morning. She has tremendously decreased the amount of fluid that was coming out of it.
Last night I was so stressed and tired front an entire day and night taking care of her by myself. She would not drink her special nonfat formula for anything. She would thrash her head and lash her tongue at the bottle she hated the stuff. I managed to trick her into an ounce her or there. One time I got her to drink 2oz while asleep. I was at my wits end with her eating this stuff, almost to the point of crying. It's just so hard knowing I am so helpless to make her feel better. And she suffers and looks at me for comfort.
Fast forward to today and the arrival of my mom picked up my spirits some. Olivia doesn't know her nana but in a few days she'll realize she has two great gradnmas, great meaning they are great not old haha.
We got a new family in the room tonight. The poor lady cried herself to sleep worrying about her daughter. I know I feel like that sometimes, and Melanie does as well. She misses my loving snores at night lol. I have done this post over the day and if you can tell Olivia just took almost 3oz in her sleep like a champ. I'm very happy with her and as Melanie said we look forward to the family finally having a holiday together, easter. Maybe even a normal life for a year or two!! I'll post an update tomorrow.
Tomorrow is her echocardiogram so cross your fingers everything looks amazing. I think there are 3 things left on our discharge list: eating the enfaport with gusto, great echocardiogram, and the fluid clearing up around her lungs with the diuretics. Once those things are knocked out of the park as week or two at the RMH is our last hurdle to flying home. Not to mention a cardiology appointment and clear chest xrays. Chylothorax always likes to rear its head. However, the physician's assistant is confidential it has healed and 6 weeks of enfaport is the worst it will get. Please please please.... Since I'm in a good mood I'll leave you with the song that keeps playing over and over again in my head....
"All my bags are packed I'm ready to go.. La la la la la la la la I'm leaving on a jet plane ready to be home again.... " (I forget the lyrics it sounds good in my head). First thing I do when I get back is hug the heck out of Nathan and Delilah and definitely never let go! Then regain manliness, poker game, hooters, a good outing with my friends. I miss everyone so much even my boss. Hahaha. I do have a great boss. Thank you UNO for being understanding.
I'm like Nathan trying to avoid bedtime
Wednesday, March 21, 2012
An absolutely fabulous and heart felt moment happened last night. In all of this craziness, Nathan is doing great in school; Alpha honor roll in fact. Last night was his first reconciliation which he was so nervous for but did a great job at. We missed Brett and Olivia cheering him on, but we hope they will be home for easter and hopefully his first communion. While going through all of the piles of mail, I came across an invitation for Nathan to a friend's birthday party. Now, birthday parties invites are like status verification. If you are cool, you get the awesome invites. So to say Nathan has been anxious about getting one to a special party that he heard about at school is an understatement. I opened the envelope and passed it on to him quite quickly. He was thrilled, sat it down and ran off to do his chores. I later picked it up and read times and places. Shocked and surprised, I read the bottom line. It reads in lieu of gifts, please donate to Olivia. How selfless??? Four little boys have sacrificed their gifts for her. I can not even begin to express how amazed I was at their generosity. I sat on the floor and wept; tears of frustration, sadness, happiness, amazement, and gratitude. I just hope
one day we can truly thank everyone for all they have done for us.
Tuesday, March 20, 2012
Another rough day. She stopped drinking her new formula. She drank the new low fat formula great for 36 hours probably. She was getting between 2.5 - 3.5 oz every 3 hours. Today at 11:30 she took her last 3 oz bottle. They also started to wean her sedative, dex.
She also hates her nasal cannula and is always going at it. Her strategy is to rub her eyes then move her hand down until she pulls it out of her nose. Just a few minutes ago they finally took it out.
She's now getting a full load of iv fluids. She still won't eat probably because they won't let her get hungry or dehydrated. She isn't sleeping anywhere near as much as she used too. Tonight she's only slept 4.5 hours and only a few hours during the day. She's way over tired. I'm tired of seeing those blue eyes.
In a few hours I'll be dropping Melanie off at the airport and tomorrow I'll pick up my mom from the airport. I think I'll be pretty tired from olivia's current sleep schedule.
Good news is her chest drain is draining only a small amount now so maybe only another day or two with it. It also means our chylothorax issues might be half way solved. No more leakage but she still bought herself probably 6 - 8 weeks of her low fat formula. Maybe tomorrow will be better.
Sunday, March 18, 2012
Today, I slept all day and Brett held down the fort at the hospital. When I returned Brett and Olivia were both tired and frustrated. I sent him to the rmh to sleep and scooped her up. It took a minute to figure out how she wanted to be held but as long as she was cradled close she was happy and off to sleep. We are hoping they transition her to all PO meds tonight and wean the oxygen off tomorrow. The draining from her chest tube is less but not gone. We will know more tomorrow.
She's slept a lot so far today. I figured she'd like a change and when I picked her up she got upset. Her sats or breathing didn't go up so maybe it wasn't pain. She might not want to be messed with I suppose. Here's a video with her sad little whimper, still no smile.
Melanie and I are getting pretty tired. Melanie takes the night shift and I take the day shift. It's hard not to get enough sleep but she really needs us. I think I'm going to hold on to the other hand of the glow worm and take a nap and wait for rounds.
Coming into her Glenn we were expecting smooth sailing and heading home April 2nd. It might still happen but today didn't reinforce those dreams. Her sats were sitting between 69 - 72 with 2 - 4 liters of oxygen most of today. The looming unknown issue is the chylus that is leaking from her lymphatic system. The drainage from her chest is light pink milk. They are sure it is chyle because the sent it off to the lab. They halted the fatty breastmilk and have started her on enfaport. It is a yucky fat free formula. At first she screamed when taking it, but after her getting a lot hungrier she took it like a champ. We still aren't up to her usual 4 ounces but 3 isn't too bad. The idea is to replace the fats in her lymphatic system with nothing and then everything can repair itself. Everything we have read are horror stories of dealing with this for weeks or months with chest tubes or even having a special surgery. I am told by the attending that 9 out of 10 chylus babies shake it quickly and are out within a week, week and a half, the lucky 10% are around much longer.
I like the odds but I also feel the guy was just saying that so we wouldn't start panicking. On a brighter note Olivia is doing good tonight so far? She is taking her oral pain meds very well, Tylenol and oxycodon. It really helps a lot better than all the iv pain meds. She was very irritable and wouldn't let herself sleep today but she has finally given or up tonight. She was laying there at 2am very calm and took her 3oz and meds great. She then went to sleep. Hopefully she'll sleep a long time. Right now her sats are good with 2liters of oxygen, 77%. Maybe she is turning a corner and will have a better night.
Saturday, March 17, 2012
Since Melanie went back to Ronald McDonald House to sleep after staying up all night with her I started keeping notes for her. Here's the first one from 11am until 3pm.
Sats keep staying low have to keep holding the blowby mask close keeping it at 72. They finally gave her Tylenol and oxy at 2:25pm. She is just chilled out. Nurse just took blood gases because of low sats. She thinks maybe some chest pt will help. She took 4oz over an hour. Next feed at 4pm. She is getting a sore on her eye and nose from all the cannula rubbing and with how she rubs her face a lot. Seemed to like me talking to her. Finally no morphine on board. Still on dex for anxiety. Still waiting to get rounded on. Might take out iv in left leg. It has been bothering her a lot and drew back a little pink. Hopefully won't need another iv. Blood pressures keep going below their limits right now 70/34 with a map of 47. Not sure what I'm talking about but it is what it is
Olivia after freaking out finally got the attention of the resident on call. They lowered her sedative and took off the nasal cannula. Within minutes, she was freaking out with says in the 40s. They quickly calmed her doewn with the good Orleans hair dryer. It was then that the nurse pointed out her chest tube drainage. When she gets mad alot comes out. Better out than in, but the color looks like strawberry milk. They think it is Chyle from her lymphatic system. The fix is npo or expense formula. Worst case is surgery again. So while I spent hours each day pumping it is all for nothing. The most frustrating thing is everyone prior to surgery raved about her being a model patient. I got my hopes up high we wouldn't run into many major issues. That lead to a major letdown this morning not to mention the sleep deprivation. Hopefully we will have lab results soon.
Starting at about 4:45a, Olivia became a beast. Morphine wasn't working anymore, she was hungry but too mad to eat. I tried her favorite friend the hair dryer with no success. The nurse and I rocked, sang, and tried everything. Nothing worked until they pulled out the big guns, penabarbitol. She went fast to sleep only to relive the experience 3 hours later. Olivia is swollen and she hates anyone touching her or the bed. We are waiting on rounds this morning but hopefully we can disconnect her and really love on her soon. I will let everyone know what is happening as we know.
Friday, March 16, 2012
The nurse gave her 1 1/2 thumbs up. Everything is pretty much status quo. Typical post surgery meds. She is having some issues with her temperature and is currently trying to get it up. She is just on 2liters of oxygen through her nasal cannula. In about 4 or 6 hours she should be warmer and taking her first bottle.
Nurse just told us it sounds like everything went great. We should speak to Dr. Spray in 20 minutes or so and see her within an hour after that.
Big sigh of relief hopefully spray has nothing but good news!!
Dr. Spray has her on bypass now. Doing the repair and the nurse thinks in another hour or two we'll be able to see her. Now we are waiting for one more update from the nurse and then an update directly from Dr. Spray.
An interesting thing we learned about olivia's anatomy today is that she has two superior vena cava. They only see it in 15% of the hlhs population. Now we have another question to ask our cardiologist. Normal people only have one. The surgeon just stitches them both to the pulmonary arteries. The other question is something Melanie told me: she suggested that it would be too risky for Olivia to ever have children. I know that is looking very far ahead but like all my children I imagine them all grown up as awesome individuals.
Olivia has finished getting the preop mri for a research study. Dr. Spray had another minor surgery scheduled before Olivia. He finished the other surgery and our cicu nurse said Dr. Spray has been in with her for 20 minutes. She is fully sedated with an IV in each foot and an Arterial line in her right hand. At this point she is not on bypass yet. They are most likely carefully cutting away scar tissue from around her heart and sternum. This is one of the longest parts of the surgery, cleanup.
We were told that it is very hard to tell when you have cut away all the scar tissue and knowing when scar tissue is really heart muscle. Melanie says it is not hard, just very tedious work. Next step will be bypass with an update in an hour.
We are sitting on the 6th floor bridge between the south and east buildings of the hospital. I was taking a nap. I had a long night of reading Glenn stories from various blogs. Melanie is reading a book on her kindle. She is cuddling with Olivias lovey bunny, she says it smells like her.
This is the view from the bridge. We look forward to updating you with good news in an hour.
Thursday, March 15, 2012
Olivia has to be at CHOP for 5:30am, eastern time, tomorrow when she will be admitted and the process will start. They are anticipating that the MRI will start at 7:00am and surgery will start roughly an hour later. We will have a cicu nurse updating us but they told us to plan for four hours from when they take her to when we see her again. Today, we signed consents, did blood work, and met the research people. Her blood pressures looked great while her sats were in the high 60's. It is definitely time for this to happen. I have included a picture of her sporting a cute outfit and of course a bow. We will update tomorrow as much as possible but look here for info all day if you want the most up to date stuff.
Monday, March 12, 2012
Olivia is doing very well according to her doctors in Philadelphia and they couldn't ask for a better patient. It is nice to hear that they have very little concern that any major complications will occur, but it is major open heart surgery and who knows what will happen when they get in there. As many of the other heart moms know, the feeling of handing your small beautiful child over to a complete stranger is one of the worst feelings in the world. To have to do it repeatedly is even worse. We have complete faith that we have made the best decisions for Olivia and our family. Our family policy right now is "no regrets". We have all learned that everyday is a gift and we must treasure each and every one. We will try to keep everyone as up to date as possible through this next journey. Thank you for your love, support, and prayers.
With the impending surgery upon us, and the interesting stuff to report ramping back up, I am posting a few videos and pictures to fill the void until the surgery. Olivia's emmy (Michele Deck, melanie's mom) came to visit for 4 days. We took Olivia to the aquarium and had a great time. Melanie has also encouraged me to stop dressing her in sleepers, and try some outfits. Olivia is now 2 ft long and almost 13 pounds! She is definitely ready to go. Thanks for reading and we appreciate all the positive thoughts and prayers for Friday.
We can't get enough video making. Nathan and Delilah love seeing their sister moving and having fun, so I do these mainly for them. My mom thought they were great and I should share them. Hope you enjoy.
Sunday, March 4, 2012
Friday, March 2, 2012
. I can't believe that we have made it this far. Today she spent the day relaxing and shopping. We took our Florida friends to Carters and the mall to meet your with our British friends. It was nice to get out for some adult conversation. We didn't buy anything, much to Olivias dismay. Today we mostly missed sharing her big day with mommy and her brother and sister. Olivia and I have saved up the biggest bestest hug for both Nathan and Delilah. I miss giving them their nightly hugs and just the entire nightly tuck-in routine. Wish we had the cash to fly them up; plane tickets get pricey so fast it's crazy. Luckily after April 6th we will all be back together under one familial roof -- home!