Kate’s showing improvement. Her new heart is beating on its own. Originally, they had a pacemaker working pretty aggressively to make sure everything was behaving as needed. Today they dialed it back, and Kate’s heart is beating almost fully on its own. She is definitely showing signs of being herself, responding purposely to stimuli and being squirmy as usual.
Tomorrow we are heading back into surgery. Kate has been on ECMO the past few days but it’s not really providing what her heart needs. The right-side of her heart is struggling to deal with the situation her lungs created with her old heart. We have been hoping that ECMO would help lower the pressures but so far it doesn’t seem to be doing that. We are trying to give her lungs a chance to relax and not overpower her new heart. ECMO was providing a full supplement to her heart and lungs. Additionally, long-term ECMO use increases the chance of blood clots being sent to the brain. Tomorrow we are going to switch to a Right Ventricular Assist Device (RVAD). This device has a lower chance of blood clots to the brain and will let the left side of her heart operate normally while providing a small assist to her right-side to let it recover. This is expected to be a temporary thing only. We don’t know how temporary but according to the surgeon performing the operation, two months would be a long time. With the RVAD, we will be able to consider decreasing her sedation and letting her wake a bit.
Overall today had several checks in the “win” column and no checks in the “loss” column. We’ll take it. We would have much preferred a best-case recovery where things are better than they are. Today is better than yesterday. Here’s hoping for continued improvement.
As always, if you want to help, check our our Meal Train.
Kate got a new heart yesterday! In talking to the team, it’s a very strong, healthy heart. It was quite the roller-coaster of a day.
Kate is still highly sedated. She has chest tubes and her sternum has yet to be closed up from surgery. She’s on a respirator and still on ECMO to help give her lungs a chance to calm down and start to make friends with her new heart.
We had to move out of our huge room today. Yesterday we got to stay in it for Kate’s surgery, which was nice. Instead of waiting in a cold, dim, windowless room we were able to stay in our home of 4 months. It was bitter sweet leaving. We were really thankful for the great room. Maybe we’ll get back to it but for now we are elsewhere.
On the positive side today, music therapy stopped by. Erinn is amazing with Kate and it was great to see her stop by. While we were singing our normal songs Kate started to react by moving a bit and taking some breaths on her own. We’ll take small positive signs.
Kate is still in a very critical condition. There were a few bumps in the road in the last 36 hours that we don’t feel comfortable sharing. We are far from out of the woods. She’s stable though, which is good. It’s extremely emotional being here. This is the first time in a long time that I feel helpless to help her. Please send thoughts, prayers, good vibes or any healing juju Kate’s way.
Kate is getting a heart! I’m posting this as a placeholder. Surgery is planned to start around 8am tomorrow, Sunday the 13th. I will be posting updates here throughout the day. Surgery is planned to start around 8am. The latest updates are at the bottom.
Sunday December 13th
9:45am Update
Wow. What a morning so far. Audrey and I went home last night to get some bit of sleep. We had a great over-night nurse that knows Kate well. In light of all our planning the night cardiology dr wanted to d Covid test on Kate at 9pm. We knew that Kate would need a test before surgery but the plan was to do it at 5am when we started other stuff. Luckily our nurse called us (30 minutes after we got home) and we were able to convince the Dr that we were OK with the 5am test. The Dr was trying to make sure there was no delay in the test but we felt allowing 3 hours for a 1 hour test would be OK.
With that out of the way, we got to sleep (kind of) and woke up at 3:45 and headed to the hospital.
The covid test for Kate was tough but she made it through it. She was on edge just about the entire morning.
At about 8:30am she went back to start surgery. She was in a good mood going on her “parade” to the OR door! It was reassuring to see.
Audrey and I sitting and reflecting in our room. They are letting us stay in our room for right now. Kate will come out to another room but with the floor pretty empty, for now we don’t have to pack up!
Lots of emotion and reflection right now. We are getting good updates from the director of the heart failure team who is in the room for the procedure. Audrey and I don’t know anything about the donor at all at this point.
More soon.
12:30pm update
Just heard that the donor heart is here, Kate is open and on the bypass machine. The swap has started. All total they are expecting the procedure to take 8-10 hours from the start, around 9am.
1:40pm Update
Kate’s new heart is in and beating. All is going well for the most part. One of the heart failure team staff came and brought us some EKG graphs of her very first heartbeats! Excited news! We still have quite a bit more time before she’s out and we can visit but this is exciting!
3:05pm Update
Just got an update from the heart failure team. Kate’s going to be on a heart-lung bypass (ECMO) for a few days here. The new heart is pumping and working but it’s struggling to deal with the increased pressures in her lungs that were a result of her bad heart. Her new heart will still be working while her lungs remodel. This will be for at least a couple days. Hopefully she will be off things in a few days but for now, she needs it.
Ugg. Rollercoaster.
4:05pm Update
Just finished talking to the doctor who performed the transplant. Talking to him we are more hopeful. The heart may have been OK with out the bypass machine but they are taking things very conservative approach to things. The bypass machine is working on a very low flow, meaning the heart is doing a lot of the work itself and they are thinking that within a week or so we should be off it. One fear was would she need a lung transplant now too but everyone is saying there are no signs that is something to consider at all.
Talking to the director of the transplant team as well, he was very positive. We’re feeling better about this now. Still lots of emotion but we’re super happy with the team here and the updates they have been providing.
Kate is out in her new room on the ICU side. They are getting her settled now and we should be able to go see her within the next 30-45 minutes or so. She will be completely immobilized and out all while the bypass is in place.
8:00pm Update
This will be the last update for today and this post. We made it home to get a good night sleep.
Kate is stable and completely sedated tonight. Kate is a fighter. She’s doing very well on ECMO. We got to spend some good time in the room with her. The doctors are all very optimistic about her status but we just have to give it some time. Kate had a very bad heart and the surgery went as well as possible considering that. Kate’s in good hands now.
Things have calmed down since our last update. No real change on the Hospital’s side but we’ve found more ways to deal with what the hospital throws at us.
We are now more than 90 days into our stay. More than three months. Kate has been at the hospital more than ¼ of the year. It’s crazy to think about it that way. If we weren’t in a pandemic, this would be incredibly tough. As it is, Kate is likely getting more interaction with other adults than she would if we were at home right now. She’s regularly heading out to the front desk to interact with the staff working or hanging out there. Kate is walking by the rooms of other “long-timers” on the floor and waving hi to them.
We *think* we may have moved from #3 to #2 on the local list. Hopefully, we’ll find out this week, but there was a call for a heart for Kate last week. She was number three on the list, and the person first on the list took the heart. Fingers crossed for a holiday miracle.
We had some other interesting news this week. As a part of the hospital testing, they did genetic testing on Kate to try and gain more information on the source of her issues. They weren’t expecting anything but they found a gene that may possibly be contributing to her heart issues. This could lead to some different treatment options. At the least, it provides some interesting information on the source for us.
With the holidays coming up, this is certainly going to be the strangest time ever. There’s really no way we will be home before Christmas. We’re starting to decorate the room; Audrey is listening to Christmas music and starting to practice playing it on her ukelele! People keep asking what Thanksgiving will be for us. We have some friends who are dropping off a meal for us on Thanksgiving day and we are looking forward to that. Other than that, it will be business as usual for us at the hospital. Later this week we have a mini christmas tree showing up so we’ll probably decorate it a bit.
As always, we have our mealtrain up for anyone who feels up to making food for us or tossing some delivery giftcards our way. We have been enjoying the food and (adult) beverage drops from those who are able. We sincerely appreciate the gift cards too. Thanks for all the support!
This has been a tough week (or two). There is no progress on Kate’s position on the list. Still at #3, the same spot we were at at the end of week 1 of our stay. We’ve been in the hospital for over 70 days and in many respects, it feels like we are fighting the exact same battles we were on day 1.
Our biggest problem right now is that the hospital policies are such that Kate is not allowed to sleep. There is absolutely no respect for her need to sleep. Overnight she is getting woken up around 4am for an assessment including blood pressure. This wakes her up 100% of the time and she never gets fully back to sleep after this. This leads to an exhausted toddler and exhausted parents. She isn’t able to play or explore due to being too sleepy and it’s sad.
This weekend we are trying to regress her back into two naps from her current 1. This seems to be helping a bit but it means that Kate’s rehab schedule needs to change, Audrey’s schedule needs to change and Dave’s work schedule needs to be changed. The worst part is that it feels like no one really cares about Kate’s well being. She’s getting good cardiac care but as long as she’s medically stable, the hospital really doesn’t care about anything else.
This week we tried to get a group of people together to see what could be done to help with things. This included our Primary Physician, the manager of the unit we are in, our social worker and someone from the hospital’s risk team. The meeting was scheduled around the availability of the risk team. Unfortunately the risk team didn’t bother showing up and didn’t even give an excuse for not showing. It probably wouldn’t have mattered as ultimately the hospital’s first priority above everything is limiting legal liability. This was clear from the meeting and that goal comes before patient care in all cases.
It’s sad walking around the floor. There are very few kids here who have a parent with them on a regular basis. The kids without a family member present are zombies. Most are propped up in their cribs pointing at the TV. If they are lucky, they may get an hour of a therapy (music, occupational, physical, etc) during the day. Some of the good nurses will go in occasionally and interact with the kids on a non-medical basis but this is the exception rather than the norm. We are extremely lucky that Audrey can be with Kate during the day.
I don’t want this all to be a sad rant though. There were some cute moments this week. On Thursday we carved a pumpkin with our awesome OT provider Nancy! She’s been helping Kate work on sensory issues (Kate doesn’t like squishy things for example). It was cute seeing Kate interact with a pumpkin, even though she wasn’t super thrilled about it. We also dressed up and went trick-or-treating in the hall. We stopped by the nurse’s stations and the nurses gave Kate little toys (that we provided). It was cute. There’s another long-term kid on the floor who is waiting for a heart. He’s a bit older but he and Kate exchanged some toys for Halloween. It was cute.
Thanks to everyone who is thinking of us. This is a very strange, sad, lonely time and it’s really tough.
It’s been a while since our last update and we thought it was time to share our status.
We have been in the hospital for 7 weeks now as of today. This is by-far Kate’s longest hospitalization yet. That said, things are going reasonably, all things considered. Kate is still growing, learning and developing like a normal toddler. She’s getting very close to walking on her own. She’s still not talking but is using more and more signs to share her wants and needs. Kate is getting lots of developmental assistance while in the hospital. Each week she is visited by speech therapy, occupational therapy, music therapy and physical therapy, all coming by at least a couple times per week.
In a lot of respects, the hospital is closer to home than home is right now. The hospital is the only place all three of us can be together. We spend way more time there than at home too. Kate has a pretty fun setup with lots of toys and things to work on too!
There is still a lot of headaches with the hospital. This week we found out that Kate’s speech therapist is being moved to St Paul. Kate had developed a fantastic relationship with this person, getting to the point where Kate would come up and sit in her lap to read! This was huge for Kate. We’ve seen our non-verbal Kate communicating much more using signs too. Unfortunately it will probably be another month or so at the soonest before Kate can get close to another therapist, assuming they are a good fit for her.
We’re also dealing with the continued frustration of nurses completely ignoring requests, desires and in some instances, ignoring orders with respect to Kate’s care. We’re working through these but they are a repeated issue and seem to be a culture problem with our unit. We have a continuous revolving door of nurses rather than a few core nurses that are assigned to Kate. There are some that are great and repeat but more often than not, we are getting new faces that we have to train all over again on what Kate needs and it’s tiring and frustrating.
On positive notes, Dave’s brother Tom made a great set of handlebars for Kate to let her push her IV pole on her own! She’s still warming up to them but often will have lots of fun practically running down the hallway.
Kate’s really growing and developing too! We have been able to keep her on a steady growth curve and are seeing more and more development all the time. Kate is getting more and more independent every day and it’s fun to see. She is good at taking people’s temperature using the room’s forehead thermometer. She knows where the stethoscope goes on her and frequently wants to listen to herself and others.
A huge thank-you goes out to everyone who has reached out with food or food delivery gifts through our meal train calendar. We really appreciate it. There’s no end in sight to our stay here at the hospital. For anyone with smaller kids, if you are open to it, we are adding some virtual play-dates to the meal-train calendar. It would be fun to let Kate see and interact with some other kids…all the interaction she gets at the hospital is with adults other than her virtual ECFE class once a week.
A huge thank you is going out to everyone who is supporting us. There has been a lot of support from friends and family. People have come by and hung out in the park at Children’s to say hi, others have brought food, still others are helping with gift cards for food delivery services. Even reading and showing your support in FB and/or this site is hugely helpful. We really appreciate the support so Thank you!
We are just past 21 days in the Hospital now. Kate is doing an amazing job getting into a rhythm. The seems to be really enjoying seeing and interacting with more people! It’s amusing that she’s getting more interaction with other people in the hospital than out, but I guess that’s the strangeness of 2020 and COVID-19.
Audrey and I are getting into a rhythm. We enjoyed out room at the Ronald McDonald house inside the hospital but we gave that up and are commuting to and from home now. We have some extra driving and a little less sleep but we get to sleep in our own bed! We are super lucky that the hospital is only about 25 minutes away so we can do this. On a typical day, we get up around 6am, Audrey heads in to the hospital, getting there by 6:45am. She arrives just before shift change to let her check in with the night nurse to see how things went. Dave starts work from home, or occasionally his office and will head to the hospital around 3pm. We are there until Kate goes down around 8pm. Wash, rinse, repeat.
Frustrations are still frequent. No one at the hospital is empowered to do anything to solve problems. It’s a big huge bureaucracy designed to minimize legal risk. Everything moves at a glacial pace and it’s frustrating how little control we have. In general the staff are helpful and most try but when problems arise, it’s a big headache.
On a happy note, last time we talked about Kate’s place on the list. When we came in, she was #6 in line for a theoretical heart that was put in the system as a simulation. Just after the last post, they re-ran the numbers and she was already up to #3. This is huge! Just this week we learned that there have been two calls for Kate and she was #3 for real hearts. I’m not 100% clear on if both hearts were taken but one of them was passed on by #1 and taken by #2. Kate was one away from getting it and now she’s hopefully moved up a spot if that exact heart were to be offered again. We’re hoping this will be a shorter stay than the 6-12 months we talked about last time but we’re just taking it day-by-day.
Thanks again to everyone who is helping out. If you are in the Twin Cities and have an hour to spare some afternoon, we’d love to see you. The hospital is super isolating and it’s fun to see new faces! We can usually get all 3 of us out to the Children’s Hospital park for an adventure.
If you can help with a visit, food, please put your name on our MealTrail Calendar at https://mealtrain.com/q42yrr. We are using this to help spread out the assistance. We only have so much space and a limited amount of time when we’re not tied up with medical stuff.
Well we’re through our 2nd weekend at Children’s for this visit. It’s been an interesting week with a bunch of highs and lows.
Earlier this week the hospital had a series of carts come around for “State Fair on Wheels”! Kate got some cotton candy, a “walking” chicken balloon, some finger paints and a caricature done of her! She’s had some happy moments and we can tell she’s getting more and more used to the environment. Her sleep is generally better too.
This week we got a room at the Ronald McDonald house inside the Hospital here. It’s our own private hotel-like room with a real bed, private bathroom and shower. It’s been a nice change from having to live on the pull-out couch in Kate’s room. We have it until Tuesday and we are thinking right now that we may try commuting to and from home to get some sleep in our own bed! Other than for a quick run a couple times, Audrey hasn’t left the hospital grounds since we got in on August 21st.
This weekend has been a struggle at times. We have been clashing with nurses in what Audrey describes as “Nurse Wars”. Personality clashes abounded Saturday and the Saturday to Sunday overnight was bad with orders being ignored. We’re working with our providers to try and get things straight. Ultimately we’re much more involved in her medical care than I think a lot of the ICU nurses are used to and they feel shut-out. We are trying to get them involved in non-medical things but most don’t seem to be able to wrap their heads around that.
Today we had a bit of sobering news. I guess the Transplant Team can run simulations to see if an “ideal” heart were to come up today, where would we be on the list. We were hoping we would be reasonably high, in the top 3 or so. The simulation came back with Kate at spot 6. There would have to be 5 other people declining a heart for Kate to get the offer. With that position, we are likely looking at 6-12 months before the heart. Tough news. It seems that her year at home didn’t help her position on the list as much as we and the transplant team hoped. We don’t regret keeping her out but still wish she were higher.
Ways to help. We setup a Meal Train account at https://mealtrain.com/q42yrr. From here we can schedule visits and food help without getting overwhelmed all at once. We’ll make adjustments as time progressed. Any help is appreciated. Eagan drop-off location is coming very soon.
I’m writing this on Sunday as Kate takes her nap. We’ve been in for 48 hours now and are finally starting to catch our breath. It’s been a challenge for all three of us but we’re starting to see signs of a rhythm.
Friday we spent some final moments making sure Kate had fun with some favorite activities around home. We ate breakfast as a family, walked around outside, swung on the neighbor’s swing one last time. We made it up to the hospital around 10am and got checked in. we initially were put in one of the standard, small rooms (below). We’ve been in these rooms before and they are “cozy” to put it lightly. Still very functional but small. There are two rooms here that are larger corner rooms and made sure to pass the word that if they open up we’d love to get one.
We got settled in, Kate was in a good mood, interacting with the staff and overall pretty happy. Nap-time came……and went with someone becoming Ms. Crankypants and not wanting to try and nap in her new hospital crib.
As the evening wore on, we learned that we would get to move into the “penthouse” suite that was about double the size of the original room (below)! This was a little annoying as we had just gotten done unpacking but we weren’t going to complain. We got moved and settled into our new room without too much trouble.
Kate, was struggling with the day, having everything be new and not home. We got her down for bed and stepped outside for a few minutes of air before going to bed ourselves. Unfortunately about an hour after going down, Kate decided that she wasn’t going to sleep in her bed and would only sleep on Audrey or I. We settled in for a long night, taking 2 hour shifts to try to make it through it.
Yesterday (Saturday) was rough. No one really slept well. The staff are doing our best. The Heart Failure team is great, working with us to get orders written to give us as much control and freedom as possible. I honestly don’t remember a ton from yesterday other than it was bad. We made it outside, and have done so a lot. The staff don’t mind if Kate goes for “walks” in the hallway and stares at them. They definitely are not used to working with a super mobile toddler like Kate.
Last night we needed a better night. Previously we had gone through a sleep training process with Kate that was hugely successful. We’ve had to re-do it again after past hospital visits. We built up the “you are a big girl” and “you are going to do such a great job sleeping” comments through out the day. In the evening, after some drama with nurses and trying to get a blood pressure on a screaming toddler, we put her down and she was able to get to sleep within about 11 minutes or so and she slept through the night! Thank goodness for sleep! With everyone getting a decent night sleep last night, we’re all feeling better today.
We miss the freedom of Kate’s backpack. For over a year Kate’s backpack was a constant companion, with her 24×7 containing her IV pumps and more recently her food pump. Now we have to drag an IV pole around with the same equipment. It’s just a lot larger and more awkward.
Food is going to be tough here. Due to COVID-19 restrictions, they converted a lot of things into staff break rooms. We lost access to the cafeteria, lost access to the family break room and other spots. The Ronald McDonald house has some food a couple times a day but with Audrey’s food sensitivity, most things she can’t eat. Even finding a spot to get ice water for the water bottle is very tough. We get 1 food coupon per day to order off the hospital menu, but it’s institutional hospital food in small serving sizes. I’m not going to go into the “coffee” here. Being a bit of a coffee snob, I am certainly going to be bringing more supplies from home.
We’re trying to put some thoughts together for ways people can help. I promise to share that in the next post!
Last time climbing a tree before heading to the Hospital
Yesterday Kate was a champ. She had a bit of a tough night recovering but she’s closer to her normal self as I write this on Tuesday around noon.
We talked to the transplant team this morning. The entire Cardiology team discussed Kate’s condition at a meeting today and she’s to the point where they want her back in-patient on some stronger meds sooner rather than later. They would like this to happen in the next couple of weeks to the end of the month at the latest. Audrey and I talked and we are going to head in and start the process this Friday, August 21st. We will be in-patient from that point until Kate get’s a heart and has recovered.
We had a great time this past weekend. We were mentally planning that yesterday would be the start of the long haul…and we’re still packed!
It’s not easy but we have been expecting this. All this time we have been working with the transplant team to determine what is best for Kate. Up until this point they have been encouraging us to keep Kate home. That has changed now and that’s our signal that it’s time. We were hoping to keep her out through the pretty part of Fall and go back in late-September to early October but it’s time. We’re not looking forward to this at all but it needs to happen.
It’s going to be tough as no visitors are allowed at all at Children’s. Luckily Audrey and I can both be there at any time. Adding the restrictions of COVID-19 world doesn’t help.
