Plan.. E?

 Change of plans.. again. We were under the assumption that Lily could discharge as soon as she was weaned off her sedation meds and clonidine. The nurse practitioner with the esophageal and airway team told us today that unfortunately, Lily will need 2 more dilations, each a week apart.. And they don't want her to leave until after that. Because her esophagus is so "freshly" post op, they don't feel comfortable with anyone else doing her dilations. Even though the surgeons in GR are familiar with EA kids and dilations. The Boston team is very EA specialized, so I get it I guess. But it's still a hard pill to swallow knowing it will be another 2 weeks. Joe is going to fly home on Friday and we will figure out a new plan for the next couple weeks. I know she's in good hands, and I am grateful for her progress. Sorry if I seem ungrateful. I just miss Lily and can't wait for her to be home.

Video chat with Lily :)

Cora loves to eat!

Rose had her first s'more this week. She liked it :)

So Close, But Also Not

 Well, yesterday Lily had her EGD. They do an X-ray, and also put a scope down her esophagus to measure the inner diameter of the esophagus. Her’s measured about 3.5 and a normal baby her size it should be 10 or 11. They said around 60 or 70% of the time after the Foker process kids will need some dilation of the esophagus at the connection point. I talked to the surgeon who did her Foker and he said 3 or 4 is about the average they see, so it’s not concerning.

As of yesterday she was officially weaned off her morphine drip, and they started weaning her off the clonadine.  She was fussing yesterday after the EGD so they ended up giving her a morphine bump. Apparently they gave her another bump last night.

We’re working on getting her eating schedule up to speed. Adjusting the amount she gets and how often she gets it, through her g-tube. 

Her pic line is supposed to be coming out this afternoon, which just leaves her vital leads and her g-tube. Least amount of accessories she’s had in quite a while!

It’s been a very frustrating couple days. The general fussiness due to weaning off the medications. The fact that it seems like the general expectation is that we will just always/only be a patient of BCH. “Oh, we’ll do that in a couple days. Oh, we’ll do this next week, then probably again the week after that. Oh, we’ll just take care of that when you’re here for the 3rd EGD in three weeks”. Um...yeah, I don’t live here and I’d really like to go home someday if that’s okay with you guys.

Other than that, Lily is doing really well. It’s just hard to be so close.. We both just need to go home. I’m really missing my other girls. Hoping she’ll be home before her 1st birthday! Ugh.

This is the extent of me being a tourist. Whatever is on my way to/from the hospital, or to/from wherever I get dinner 😉 

Detox Is Not Much Fun

 Well, I guess yesterday was our free pass day. She had a good night last night, and pretty good this morning. But this afternoon I guess the morphine cut caught up with her. She’s been pretty sleepy, but with a lot of crying bouts in the mix. But as long as I hold her just right and rock/bounce her just right and don’t move my arm or scratch my nose or breathe wrong...then we’re good! For a little while anyway. Trying not to think about what the next week or two will be like if this is just the beginning. But we have to do it. She’s gotta get off these meds so we can get the heck out of Boston. 

From taking with the pain management team today, it sounds like maybe next weekend isn’t going to be our go home date. We’ve gotta get off the morphine, then on to the clonidine. They said maybe 4 or 5 days to get off the clonidine. That’s not what we were expecting. So based on that, it may push is into the next week to get home. We’re so close..but also not. Every time someone tells us it’s a day, two more days, three more days, longer than we thought, it feels like it might as well be two months. And nothing is for certain, which doesn’t help. It all depends on her, on how she handles things, how her body responds. So we’ll see what tomorrow brings. Or maybe just see what the next 5 minutes brings and start with that.

Here’s Some Bonus Pictures

 Because Lily gets most of the attention here, and these two need some recognition for how dang cute they are.

We Had A Good Day Today!

Well, like the title says, today was a good day! Lily got her morphine weaned down another 1ml and after three hours wasn’t showing any withdrawal symptoms. We will see how the night goes.

She took a three hour nap today, apparently making up for her minimal amount of daytime sleep yesterday!

They decided to leave her pic line in, just in case they end up needing it during the weaning process. It’s better for her to leave it in for now and not need it, than to take it out and end up needing one put back in.

I talked to someone from the plastic surgery team today about the flattening on the back of her head and they recommended we just work on repositioning (sitting up, tummy time) more often, rather than get her fitted for a helmet. I’m not going to argue with that! They said that the measurements they got put her on the line between “mild” and “moderate”, and with her age, they said getting her off her back will make enough difference that it’s basically not worth the annoyance for her and the work for us to do a shaping helmet.

In some of the pictures you can see the bruises on her legs from the lovinox shots for her blood clot :( Sounds like it’ll be a few weeks before she gets another scan to see where that’s at. And in the mean time i guess she just has to keep getting the shots? So that sucks.

She had to get the dressings on her pic line replaced today and she did NOT like that at all! But as soon as they were done, she was completely calm. I think at this point she just is sick of being “messed” with, so anytime anyone starts doing anything to her she lets them know she’s not a fan.

She was quite active and chatty today. It’s so nice to see her moving around and smiling and making noises! Also, other than brief moments back in Grand Rapids, this is my first extended interaction with her having nothing on her face! No intubation, no cpap, no replogal, no suctioning out oral secretions.. just Lil and her smiles and sticking her tongue out all the time 😆 

There And Back Again - A Dad's Tale.

 Hello Friends,

Well, back to life in the big city. I flew into Boston at 5:30 last night. Good flights, no issues - until I got to Boston and my bag didn't come down the chute into baggage claim! Argh. 30 minutes later they 'found' it and I was on my way.

Lily was able to be weaned off the morphine enough that they could switch to giving it to her through her G-tube, which allowed her to be moved off the ICU floor. They're working on weaning back her medications still, which is now the major determining factor in when she can go home. It looks like there is a reasonable chance she will be able to be heading home by the end of next week, but it will still be day by day. Depending on how she responds to the weaning, how she does with taking feeds, how her EGD looks next week (scheduled for Tuesday the 25th), etc.

It's great to see her with fewer lines and nothing on her face! It's just hard now because looking at her lying there, it's like..she looks good! She's ready to go home now! But still more waiting. The nurses and staff in this unit have been great, so I feel good about her being here. The next few days will be telling, as they work on weaning her morphine.

Also, just want to again say thank you so much to all our friends and family who have been helping support us emotionally, physically (taking care of our other two kiddos, getting groceries, making meals), and financially. It means so much to us, and I can't imagine going through this without all of you.

Typical Lil. Arms and legs flying everywhere!

This was my first moments with her this morning :)

Stopped to sip my coffee at Harvard Medical Shool this morning. Why not, right?

Shipping (back) off to Boston

Home Again

We arrived back at home on Thursday afternoon. The drive went very well overall. We are so grateful and proud of the girls for how well they did. We stopped just outside Erie Pennsylvania on Wednesday night, and drove home the rest of the way Thursday. Joe has his flight booked to go back to Boston on Tuesday afternoon, and he has a hotel reservation for one week. We're just going to take things one week at a time.

Lily is having a hard time with weaning off the morphine drip. Every time they decrease the dose, even by the smallest amount, she feels the withdrawal. Her symptoms have ranged from fussiness to diarrhea, sweats, gagging, and shakiness. Yesterday, they tried switching her to enteral morphine through her G tube every 4 hours instead of the continuous IV. She did ok at first, but overnight they had to restart the IV form because she was so uncomfortable. they are going to talk to the pain service and the pharmacist today to talk about other ways to wean her off it. She has clonidine to help with the withdrawal, but it doesn't appear to be helping very much.

Good news is that she is off of CPAP and off oxygen now for a couple days! Finally nothing on her cute little face :)

On the drive home

Reading buddies

Rose is so excited to be home!

I survived my first day back to work. Like my glasses? 😂

Esophagram

 Lily had her esophagram today. It showed no leak and no major narrowing! That means she can start getting feeds through her gtube tonight. They will start her on a very low hourly rate,  and keep her on the IV nutrition temporarily. As they increase her rate of breastmilk,  they will decrease the TPN and lipids IV. It may take a few days to get up to her goal rate and off the TPN and lipids completely. 

She also did great during her CPAP breaks today,  and the plan is to take her off CPAP for the whole day tomorrow. Then they will put it on tomorrow night and if she's still doing good, off CPAP for good starting Thursday morning. Progress!

Happy to have the CPAP mask off!

Almost time to go home (for some of us)

 Just a quick update to say Lily is doing well. She's been on CPAP since she was extubated last Thursday. The team is slowly working on weaning her off the CPAP to room air, and also slowly weaning her IV medications. She's on a pretty low setting on CPAP right now (6 at 30% for you medical folks) and they've been giving her short breaks with the CPAP off. Today they were able to shut off the versed completely.. yay! One sedation med down, two more to go. Next they will start weaning her morphine (which is really for pain, but can have a sedating effect). A doctor told Joe today that it could take 5 days to 2 weeks to wean the morphine 😬

Tomorrow (Tuesday) is her esophagram. They'll put some contrast down her esophagus and take some images to make sure there is no leak. If there is a leak at the repair site, or anastamosis as they call it, she may need a chest tube and they won't be able to start using her G tube until the leak is resolved. If there is no leak, then they can start using her G tube right away for feeds and medications. 

On Wednesday morning, the rest of us are heading back to Michigan. We'll stop somewhere in New York again Wednesday night and drive the rest of the way home on Thursday. Joe will fly back out here sometime next week most likely while I stay home with the other two and work on the weekends. 

Not going to lie, it's a pretty defeating feeling leaving without Lily. We knew coming out here that there was a chance she would need longer than a month, but we were very hopeful that she could come home with us. We really can't say how much longer she will need which is why we're heading home. We can't just keep our family out here indefinitely when we have jobs and insurance to also consider. Housing is also an issue when you don't know how long you'll be here. I hate to complain, but the communication at Boston Children's Hospital (BCH) has been very poor. We get conflicting messages from day to day, and no one can seem to give us satisfactory answers to our questions about her length of stay. We're really missing our Grand Rapids team. 

Trying to stay positive. She had a very successful surgery and everyone tells us that her recovery is going very well, despite the fact that it feels so slow to us! It's hard to move at a snail pace when we're so close to the finish line! Almost there.. almost there..

Lily with her CPAP

Snack break at the park

Happy Cora

Extubation, Part 2

The medical teams agreed that Lil seemed to be strong enough to go ahead with extubation again today. They had her on Propofol last night into this morning and turned that off around 9:30am. At 9:45am around 10 people massed in Lil's room ranging from Doctors, NP's, Respiratory Therapists, ENT specialists, nurses, backup nurses, and...other people I'm sure.

They spent probably a half-hour beforehand outside her room going over their plan, and all the backup plans for various possible outcomes. When they first pulled the breathing tube out her heart rate plunged...which is a terrifying thing to watch. Crazy how used to staring at monitors we've become to tell how Lily is doing. Anyway, thankfully it quickly spiked back up. It was a tense hour or so after that. I couldn't really tell everything that was going on, but it didn't go "perfectly". They said at first that she wasn't out of the woods for having to be re-intubated, but that they were comfortable continuing to try and make it work. They put her on a CPAP and went to work getting her breathing well on her own.

Pretty much the rest of the day was spent patting Lily's chest and suctioning out her oral secretions. Trying to get her to cough up all the crud that's been accumulating in her lungs while she's been sedated, paralyzed, and intubated. Big shout out to our nurse today, because Lil kept her on her toes all day long. 

They also pulled out the arterial line from her right hand today. That was nice because having that in necessitated having a splint board to keep her from bending her wrist. So now she has both hands again, and one less line going into her. Tomorrow morning they're planning to take her peripheral nerve catheter out.

When I left at the end of the day she was resting, but pretty easily agitated. We think it's a mixture of being exhausted from all the work she put in today, just being generally sick of being messed with, and probably some withdrawal from all the narcotics she's been swimming in for the last three weeks. They'll keep her on the CPAP and just monitor how she's doing. We don't really know how long she'll need that, it just depends on how she's doing. Hopefully, she can channel her feistyness and be breathing strong and on her own tomorrow! We'll see. Also, they'll continue weaning back on her morphine and dex as she can tolerate it.

-Joe

Didn't get a picture of her after extubation, so all you get for now is this snarky side-eye :)

Failed Extubation

It was a pretty uneventful weekend. They stopped Lily's paralytic on Friday and she started moving and opening her eyes. It was so good to see her eyes after over 2 weeks! They talked about extubating on Sunday, but the ICU doctor decided it was best to wait one more day. Yesterday, Monday, they decided she was ready. They had cut back on her sedation meds and her vent settings overnight. They also did a trial run with the vent settings to see how she would do without the vent support and she passed the trial. 

The ICU team was ready around noon. When they pulled the tube out she seemd ok for a second, but then her heart rate started dropping.. and dropping, and she started looking bluish. All of a sudden there were 10 people in the room and they were bagging her and preparing to reintubate. Gah. It was the scariest moment of my life I think. They used a special instrument with a camera while they were reintubating to see if they could see an obstruction or anything else concerning. Everything looked good, and the team decided she must have been too sedated and too weak still. Once she was intubated again, her vitals quickly stabilized and she appeared comfortable. 

The ICU doctor and her surgeon, Dr Z, both agreed that we should work on decreasing her sedation and getting her stronger before attempting to extubate again. Unfortunately, she started having withdrawal symptoms last night from when they cut the meds down the night before. So they had to increase her sedation meds again this morning. Her nurse said it's going to be a fine balance between keeping her comfortable and getting her ready for extubation. Her vent settings are very low though, so that's good. They plan on letting her rest today, and will talk tomorrow about possibly extubating or maybe waiting until Thursday.

This is the very brief summary of events, haha. I might blog about it in more detail some other day, but it's still very overwhelming and exhausting to even think about. It was.. awful. 

We've been discussing our plans for the remainder of Lily's time in Boston. We've decided to all go home next week after her esophagram on the 11th. So we will get another rental car and drive home on the 12th and 13th. Then Joe will fly back out here the following week, maybe the 17th. I'll stay home with the other two girls and work on the weekends. Hopefully when Lily is ready to be discharged, I can fly out here as well for a few days and then Joe, Lily, and I will fly home while family watches Cora and Rose. 

That's all for now I guess. Love you all,

Heidi