Day Fifteen – discharge day!!!

we woke up early when the nurse came in with meds and then waited around for a while before cardiology came by to confirm what we were hoping to hear: we get to go home! Last minute arrangements include calling scripts to the pharmacy, getting a cart for the rest of all our gear and checking every drawer and cubby in the room to make sure we got all our things. While we were waiting we had time for one last walk around and to the toy room, and then I signed the paperwork and we were free to go!

A friendly nurse helped me with the cart so that I could focus on Julianne and her O2 tank, and she also helped me load up the car. Then we zipped right out of there, into a gorgeous fall day, sun shining, fall leaves blazing and beautiful blue skies.

We arrived home to find Daddy in the bobcat doing some heavy yardwork, apparently the hardware store was doing major clearance on all their plants and he scored a really good deal on a handful of those Arbor Vitae trees. At first Julie did not want to get out of the car, I don’t know where she thought we were, but she was crying and trying to re-buckle her carseat. Finally I convinced her to try getting out and we went inside where she promptly made herself comfortable on the couch with the remote and I brought the rest of her stuff in.

Later I had to make a run to the pharmacy to pick up her new meds and it was so wonderful to just be free to drive around and stop where I wanted to stop, eat what I wanted to eat and not have to answer to anyone for an hour or so.

We had roast chicken with mashed potatoes and broccoli for dinner and everyone was so happy that we were all together again! Life is beautiful!

Day Fourteen Post Fontan

Today began with a visit from Dr.D who said we were going to plan on discharge on Friday morning. He would line up all the prescriptions and send the oxygen people by to help us make all the arrangements so that everything would be ready by the time we left.

The representative from the oxygen company stopped by and brought me a few portable bottles of O2 and showed me how to use them and then she described the machine we would be using at home, it generates its own O2 and you just plug it in to the wall. The bottles we would use when we leave the house with Julie.

After that Papa came by to drop off the old oximeter and someone came by to give us a new one that can run on batteries, should we need to leave the house with that as well. We went for a nice walk to the playroom and they played a game of table hockey. After that they pretty mush left us alone, only stopping in to do vitals every four hours and bringing in her meds on schedule. I was able to bring a few bags of our stuff out to the car while Julie napped and then we went for another walk around and just hung out together, watched a movie and got some sleep.

Day Thirteen post Fontan

woke up in the SCU and they told us they were moving us back upstairs right away. So we packed our stuff and moved everything upstairs, when they do these moves they just keep Julie in her bed and pile everything on top and move the whole bed.

Once we got upstairs they pretty much left us alone all day, the nurse didn’t even come to count dirty diapers or anything and that was fine with me. Barb stopped by to say that the remaining tube would need to be draining a lot less before they even consider taking it out and reiterated that we may just go home with the drain still attached. I’m already pretty sure that we will be going home on oxygen, but that’s OK too. I am confident it wont be for a very long time.

So we played and sat in the window to watch the helicopter fly away, and then we went for a long walk all around the ward and stopped by the play room and checked the awesome toys they have in there, her favorite was this tool bench that had all sorts of wrenches and pliers and big screws and a drill press that made noise! She also had fun with the play kitchen with all of its doors to open and knobs to turn.

We came back to the room for a snack and the nurse took that big bulky IV off her arm! Yay! two hands again! She had a nap and slept for a long time, close to four hours. I felt like she got some good healing done in that time. I caught up on the episodes of The Daily Show that I’ve been missing and checked my emails and has a nice quiet cup of coffee. I also got to do some laundry and clean up our stuff a bit.

Then after she woke up and had some dinner we put on our shoes and went for another stroll around. We looked at the fish tank and read some books and just explored all the areas where we are allowed to go. She is walking much much better already, not nearly as wobbly and she’s got her signature “Julie” stride back too, where she kinda swings her left arm a little more than the other and it makes it seem like she’s saying “here we go!” whenever she walks somewhere. Back to the room for a movie and a snack and before long she was sleepin again.

Day Twelve post Fontan

this morning they said we were gonna have a chest xray and then decide whether to get that new chest tube or not. But then someone made the call that she was getting the chest tube no matter what the xray showed, so we prepared to go down to SCU where they would perform the procedure. The xray came just before we left and we were able to see some fluid in there and we were on our way downstairs. They explained the procedure (hole in side under arm) the explained the sedation (ketamine, kills the pain and is an amnesiac, but can cause hallucinations when you wake up from it, safer alternative to general anesthesia which would require intubation.) I signed the consent forms and was holding an oxygen mask over Julie’s face as they drew blood and got the echo machine going, at least 10 people in the tiny SCU room, and suddenly Barb is telling me they’re not gonna do it. She said there wasn’t just one good puddle of fluid in one place that made it worth the risk of such an invasive procedure. I was so happy! Yes! Don’t cut another hole in my kid!

So they said we should spend the day in the SCU where she would receive more attentive 1 on 1 care and also IV lasix on a more aggressive schedule to really dry her out and see what the rest of the day had in store for her. We got to keep the room upstairs too, so I didn’t have to totally vacate all our stuff. She had a looong nap once they all left her alone and she woke up happy and smiling, daddy and Mimi were there to encourage her to eat and drink. We spent the evening just hanging out together, watched a movie and even skyped with my mom for the first time! yeah!

We both fell asleep early and didn’t wake up until the morning. Oh!! and she nursed again! No pinching or anything! I can’t even tell you what that did for my conscience, I’ve really been feeling like she was angry and distant from me for bringing her here and just standing by while all these strange people were allowed to hurt her. That may sound overly complex for a two-year-old, but we were so close before the surgery, and she was so affectionate and it just really saddened me to think that our nursing relationship (which I believe has been a critical factor in her doing so well after her first two surgeries, and in general) could have been ended prematurely due to the trauma of this experience. This was a very long nursing strike to come back from and I am thrilled that she remembers. I hope no one thinks this is for selfish reasons, mamas milk is truly miraculous stuff! It has antibodies that can protect her from diseases and it is very nutrient rich and has good fats in it and it’s just such a good tool for comfort, it makes going down for a nap easier, can soothe her when she’s upset and helps her go back to sleep when she wakes in the middle of the night. I’m not ready for my youngest baby to not be a baby anymore, and I’m so happy to find out that she wasn’t done yet either. Whatever was going on that made her not want to drink and not want to nurse seems to have passed and I think that is wonderful!

Day Eleven post Fontan

I really didn’t think we’d still be hospitalized by day eleven, but it is what it is. I think that one big reason it’s taking Julianne longer than the average post-fontan kid is because of the AVMs that she has, they are really keeping her sats low.

Today was Julianne’s birthday and we started the day with a visit from Dr.Q’s surgical assistant. That’s not her real title, but I don’t know what else to call her. She is a really awesome lady, she has probably explained more to me in the two days that I’ve known her than all these other people combined (Dr.R is excluded, because he talks to me a lot but he has been largely absent from this hospital stay, I’ve only seen him twice.) She’s really nice and she tried to unclog the chest tube that stopped draining. It didn’t work though and so she just decided on the spot to go ahead and pull it out. she left the hole unstitched though in the hopes that it would drain a little through the hole. It didn’t do that either. She said we would wait and then reassess later in the morning to see how the fluid looked but that there was a greater than 50% chance she would be placing a new tube.

Dr.M came in to see what would happen if we turned off the O2 completely but she dropped down too rapidly and he put her right back on. Then he said an echo would take place around lunch time and said there are really three things she is fighting against, her fever, the fluid and her low sats. Said to get her moving if possible.

Then some of the staff stopped by with a Happy Birthday Julianne poster and some presents and we sang the song to her. She just sat there looking a little freaked out, but these ladies were total strangers and she just doesn’t trust new faces right now. The toys were cute though, a sweet lil baby doll, a noisy thing with buttons to push, some fancy headbands that Marlowe will probably want to borrow before Julie’s really ready to wear them, a couple beanie baby stuffies, and a tiny little cake, just perfect for a 2 year old!

then the echo guy came and Nicole came back to say they weren’t going to do the chest tube today anyway, it looked reasonable enough that they would hold off and take another look by xray in the morning.

Then Auntie Cole and Uncle Bryan came by with the BIGGEST balloon I have ever seen, seriously you could fit two Julies inside this thing and they’d still have room to roll over, and a really cute little stuffed puppy who looks just like their real dog. She slept through the first part of their visit, but woke up just in time for daddy to come in with a couple more gifts!

Mimi, Papa and the kids were there too, but we kept Henry quarantined in the atrium wrapped in a pile of lysol wipes because he’s got a case of the 1st grade germies. Nothing serious, but we don’t want to spread it around either. We got Julie dressed and in a push cart, she had to bring her IV and O2 too, but we got to go for a little walk and play and visit too.

Then the kids left and soon Daddy was on his way home, Julie and I watched Rio and I chatted with my mom for a bit and then we tried to get some sleep. I was pretty damn tired, but I swear we were awake every 1/2 hour with her sat monitor going off and me trying to do thing that would help her. She just would not sleep on her good side last night, no matter how hard I tried.

Happy Birthday Julianne!!

Day Ten post Fontan

Fever. she woke up really grumpy, and hot. a few successive temp checks showed she was cooling off. Mimi and Papa came by and she was so withdrawn and tired. she would barely acknowledge they were here, fixated on RIO instead. Then she slept again for a long time. Nick and the kids came by and she was still sleepin. I took the kids to the atrium to play, and the cafe for a snack.

Then we came back and she had just woken up but was really hot. 39.3 which is like 103 I think. still getting antibiotics, still no culture results back. Family left and she slept some more then woke up really fine, smiling, happy. Normal temps. drank a bunch, had a big poop, then we settled in and watched cartoons, she was holding my arm, so sweet.

I tried to sleep to and the alarm kept going off for low sats, so the nurse kept upping the O2. She was on such a small amount for so long now (.2 liters) that usually just a little more would make a difference but this time it wasn’t helping. she went up to 1 liter, switched over gauges and went went up to 2, 3 liters and her sats are still below 70. Call to the on-call doc and then the respiratory experts come by, an xray, a resident, it’s 2 am and there are 6 or 7 people in the room again. Now she’s got a mask on, maybe her nose is plugged up? maybe the lines are kinked somewhere, maybe her lungs are filling with fluid? check the chest tubes and notice one side has almost completely stopped draining, which would be good, but they stripped the lines (squeeze the lines kind of like trying to get the last of the toothpaste out of a tube) and it would stay collapsed, supposed to pop back to tube shape. It seems to be clogged at the end that’s in her chest. Call the cardiac specialist guy who’s currently in-house and he admits he only works with adults. He’s useless, “yup it’s clogged” offers no solutions. People gather in groups and come back to tell me that the real expert, Dr.Q’s surgical assistant is due to arrive at 6am. It’s now 3am and her sats came back a little. I turned her on her other side and have been doing the pulmonary back patting that worked in the SCU that time she desatted. It semms to be helping. We all agree to wait for 6am. Try to sleep again…

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"As watchers and protectors of our children, we're always waiting, always watching for the next Big Bad Thing that will step out of the bushes and harm our living, walking hearts. That's what children are, I've been told, they are our hearts set free into Life, walking around and challenging this grand rough world to do its very worst. And as parents, we watch helplessly, knowing that if the worst happens, it's our hearts that will die, too. It's the part of parenting that no one explains beforehand very well, because it's hard to talk about, and besides, you wouldn't understand anyway. You get it only when your own chaotic heart takes reckless flight in dirty tennis shoes." -Robert Rummel-Hudson

Karren’s Heart-shaped Prickly Pear

For Julianne -- and all the other CHD kids. Wishing you love, strength, beauty, resilience, & determination (like a cactus)


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