We are 147 days into our hospital stay. It’s been 32 days since transplant and 16 days since the RVAD came out. Kate’s making progress. It’s slow progress but we’ll take it. We were down to 3 IV pumps at one point. We had to back-track a bit due to Kate’s fluid balance still being way too far on the positive side. Unfortunately the big issues Kate is facing seem to primarily be from poor care decisions made by the ICU team after surgeries. 

I’m not going to complain about problems today but share some of the fun items. 

We’ve been able to go for more wagon rides lately! Kate has taken a few assisted steps again. Kate’s sitting up lots. As I write this, she just got done sitting up on her bed for at least an hour and a half. She’s being a rock star weaning off her pain meds. The past few days she’s been crazy tired due to changes but in the awake times she is really cute and getting back to herself. We still haven’t celebrated Christmas yet. If it’s a good weekend, hopefully we can do that this weekend. 

Audrey and I have gotten back into a regular schedule. For the most part, we get up before 6am, Audrey heads to the Hospital, getting there before 7am when shift-change starts. I start working around 7am until about 2pm or 2:30pm.  We’re at the hospital until 8pm to 8:30pm then we head home for a tiny bit of R&R then off to bed. It’s exhausting but we’re making it work. 

It’s frustrating that we are still here at the hospital working on recovery. We certainly didn’t see recovery as taking us down this path. That said, we are seeing progress all the time. It may be slow but it’s progress. We’re happy Kate has her new heart and she’s on the path to recovery.

As always, thanks to everyone who is able to help us. From food deliveries to food delivery cards to words of support and everything else. We’re excited and hopeful to be able to get Kate out of here sometime in the future…whenever that future is.

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Making progress! Yesterday we moved from our room in the super intense front of the unit to the room right next to our old room! Yay! Kate has been weaning her pain meds and respiratory support like a champ. Kate is sitting up unsupported for longer periods of time and even stood for a tiny bit today.

Kate’s still extremely weak and tired but seeing we are on day 24 or 25 post transplant and only 9 days since her last chest opening surgery, she’s a champ. Withdrawal is slow and still difficult to watch. We have a long road ahead but every day we are seeing the road get clearer and clearer. We’re down to 7 IV pumps today!

Yesterday when we moved rooms, Kate was crazy excited to be in the hallway again. She was smiling, laughing and waving all over the place! She was sad that the parade only lasted a short bit and was balling and asking for more right away. It was very cute. Here’s 2 videos of Kate’s “parade” from the old room to the new room.

Kate is back to using all her signs, and is regularly showing dad new signs for favorite songs. I don’t know if mom is teaching her or mom just is quicker to understand but she is regularly requesting quite a few songs from YouTube.

Today we got to go for a wagon ride and we sat up in our chair and played with a bucket of water! Lots of progress happening. It’s fun to see things progressing. Our biggest medical issues right now are just the consequences of being intubated and sedated for so long!

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Wow. We got off the RVAD 5 days ago. Friday, January 1st, Kate was extubated from her breathing tube. Her sedation and pain meds are being weened. It’s been a tough few days. We are on 136 days in the hospital and day 21 post transplant. Kate has had 3 open heart surgeries in the past 3 weeks, including having her sternum opened twice. 

Kate is dealing with withdrawal from anesthesia and narcotics. She’s dealing with a huge amount of excess fluid in her body from surgery and hospital mismanagement. Kate is also becoming more and more herself but still can’t move the way she wants. Kate also still has a nasal g-tube, and nasal o2 tube in addition to her her 3 iv lines. Today we got her urinary catheter out.

Friday and Saturday were tough. Lots of trouble coming off meds and Kate didn’t come off the breathing tube as easily as we would like, but it stayed out! It’s been an amazingly difficult few days. Kate has been on pain and sedation meds the entire time. It’s amazingly difficult to watch your little one suffer through withdrawal, knowing at times there’s nothing you can do other than be with them.

Today, Sunday, has been a good day! Kate got Physical Therapy for the first time since transplant! It’s a small step but Kate sat up for the first time today! It was a supported sit and only for about 10 minutes but it was a small victory. Kate is also more and more herself. We are seeing more communication and sign language. She’s still frustrated that she can’t do what she wants to do but we are thrilled to see more and more of our Kate! 

On the medical side we are making progress too. We are getting rid of some meds. We still have about 23 separate IV pumps working to deliver what she needs but that’s down from where we were at. Today we are working on respiratory support, we got rid of the urinary catheder and the nasal stomach tube. All in all, it’s another day of progress.

This has been a much more difficult recovery road than we ever imagined. There have been lots of ups and downs. Lots of frustration and many happy moments. As always,thanks for the support. This has been the strangest holiday season ever. We haven’t celebrated Christmas yet and likely won’t for a bit yet. Here’s hoping we continue with the good

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It was a successful surgery on Tuesday to remove the RVAD. There was typical hospital drama with a complete lack of communication from the OR team during surgery. I’ll skip the rant here as I’m tired.

Kate spent the day working on resting and trying to reduce swelling from the extra fluids they gave her yesterday. At the end of the day Kate is reasonably sedated this evening, enough so that Audrey and I decided to head home for the night to get some laundry done. First time since Christmas Eve morning!

Very short update today here. Yesterday was tough with the communication hell but Kate is making progress! Yay!

Wow! What a strange Christmas holiday!

Thursday, Christmas Eve, Kate got her breathing tube and several other tubes removed! We also started the weaning process on lots of stuff. There have been a couple pauses for things but in general Kate has been a rock star dealing with everything. It’s not easy seeing your little one suffering withdrawal symptoms as her narcotic levels slowly go down. That said, it’s exciting to see the quantities slowly go down.

Kate’s heart and lungs have been working hard, too. The RVAD has been doing it’s job, letting Kate’s new heart get used to the lungs and letting the lungs relax for the heart, aided by drugs. It’s been going so good that tomorrow Kate comes off the RVAD! This is super exciting as she gets the huge tubes caring lots of blood out of her chest! Unfortunately this means she has to go in for another surgery that again opens up her chest. This will be Kate’s 10th time under anesthesia…at only 20 months old. This surgery will be a bit of a setback in terms of recovery, but a necessary one that we are happy for. Kate will have to go back on some more narcotics and have to be intubated again. We’ll also end up back on higher respiratory care for a bit but hopefully it will be short-term. With this surgery, we’re hoping we get to start the final steps towards the recovery path.

We’re excited for the next steps! It’s been fun seeing our little Kate poke through the narcotics. She’s back to needing some kind of clothing. Yesterday she started picking off her ECG stickers that track her heart rate. It feels really good to be her rock, her source of comfort in her hard times. We’re looking forward to things getting better and tomorrow is a very strong step forward!

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It’s Christmas day and we’ve had a couple good days!

Yesterday, Kate got four tubes removed: her catheter, two nasal tubes, and her breathing tube! Kate is much more awake than previous days, too. These are pretty major step forward! The day was plenty challenging, with a lot of meds being changed and everything coming out. Kate was much more attentive and awake! Lots of unhappiness and pain for Kate. It was quite exciting for Audrey to get to hold Kate for the first time in 11 days though. Kate and Audrey both really enjoyed that. Kate then amazed us all and slept through the night!

Today, on Christmas, Kate got some meds decreased a bit, her respiratory support turned down, and the speed of her RVAD pump decreased for the first time. The RVAD speed going down is huge. Once that goes down, we get the big chest tubes out and can start the healing process in earnest. Dave got to hold Kate today too!

Kate still has at least one more surgery, possibly more, before we get to think about the going home process. When Kate is done with the RVAD, she will have to have another chest opening surgery to remove tubes and seal things up. That’s going to be another recovery period but hopefully it will be quicker.

All in all, we’re happy to see some forward progress on recovery. It’s a good Christmas present!

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Well it wasn’t as quiet as we hoped this weekend but Kate is still making small progress.
Kate’s still sedated. She has moments of wakefulness now and then. Often she is agitated when awake…understandable with all the lines and tubes. That said, she has very cute moments too…she’s obviously loopy but she will occasionally make some of her signs or try to switch to a different video on the iPad. All very normal things for Kate!

Today we made some serious steps toward getting her breathing tube removed. We’re still a couple of days away from that happening but we’re making progress. The breathing tube being in is the driving force behind the sedation. We are really hoping Kate might get the tube out before Christmas.

Monday’s tests showed some progress with the new heart and lungs making friends. It’s slow, small steps but it’s progress. Ultimately we’re on a waiting game.

We’re struggling again with our common hospital issues. Communication and continuity of care are things we have expressed frustrations with this entire stay. Kate’s change in needs has brought a new set of nurses and providers into the picture. We are having to train them all over again what we want for Kate’s care and communication desires.

Unfortunately the unit we are in seems to almost pride themselves on no continuity of care. Staff are shocked when they hear that we had the same nurse for 3 days. It’s frustrating to have to teach each new person what calming techniques work for Kate. Ugg.

Here’s hoping for continuing progress. As always,thanks for all the support. From people dropping food or sending food delivery cards to people just expressing their support. From all three of us, Thanks!

Kate is still improving today. Small steps. We’re not going to be making any big changes until Monday at the earliest. Today’s echo showed things still need time to recover and chill. There were a number of positive steps forward though. Today Kate started a tiny bit of tummy feeds. They are trying to get her gut to start waking up and it seems to be working. She got her last chest tube removed today! This was one of originally three tubes into her chest there to help drain blood and fluid after surgery. Her sternum incision is looking good with the bandage off and just a clear liquid bandage left.

We’re not sharing photos of Kate right now. Maybe at some point but for now, keep thinking of her as the cute, smart, energetic toddler sledding down the hospital hallway!

Today I wanted to share a bit about the Right Ventricle Assist Device (RVAD) device she’s on. This seems to be Children’s first time using this specific device it but it seems pretty cool. There are 2 tubes coming out of Kate’s chest, one coming out from the Right Atrium of the heart and the other leading back in to the Pulmonary Artery. In the middle is a cool little pump that works with a magnet to spin an impeller in the tubing. The blood flows in a self-contained circuit. The pump is roughly the size of a soup can. There is a small computer-sized control device with attached monitor to adjust the pump speed. All in all, it’s a simple, elegant design. We got to talk to the manufacturer’s rep that was on-site with it. He let us play with his demo unit too. Coming from the huge ECMO device that required constant attention and tweaking it was very interesting to see how small and simple it was.

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This weekend is likely going to be quiet. Nothing major is planned. We may not share over the weekend. If anything comes up, we’ll share but we are all going to rest and try to recover from a crazy busy week.

Kate had her surgery to replace the ECMO (ExtraCorporeal Membrane Oxygenation) device with the RVAD (Right Ventricular Assist Device). ECMO was providing a full heart-lung bypass capability while RVAD is only assisting the right-side of her heart.

Surgery went well. Kate’s lungs are working great. The left-side of her new heart is performing great. Her right-side is still struggling against the high pressures in her lungs but the RVAD is helping with this now.

Things feel much more stable. We went from 3 staff in the small hospital room at all times down to one. The large closet-sized ECMO device was replaced with a small media cart sized pump. Several of Kate’s chest tubes are gone and her chest is sealed up again. Things are feeling more positive.

We still have a long road ahead of us. Kate needs to keep her breathing tube and needs to stay sedated for the time being.

Thanks for all the support everyone. We don’t have the capacity to reply to everyone but rest assured we are reading each and every comment and reaction and really appreciate them.