Today Hana was discharged from the hospital. We walked out the front of the hospital. We walked as far outside the hospital as Hana has been and then we just kept going (by then she was riding in the stroller). We walked all the way to the Ronald McDonald House, which is our new home. As you can probably imagine, it was loaded with emotion – happiness, gratitude, joy but also some sadness to be leaving the amazing team of people who had come to be like neighbors, co-workers, friends and family! There has also been a little stress and fear with the transition, like getting all the new medications exactly right and getting the room at the Ronald McDonald House ready and organized – it’s smaller than Hana’s hospital room and we actually need to store a lot more things in it! Hana has never seemed happier and more like a normal toddler! But she has also had a tough time transitioning to sleeping in a strange place and in a Pack ‘N Play and it was almost 11:30 before she fell asleep for the night. Because of that I’ll share more tomorrow! After 205 and a half days in the hospital we are ready to start a new adventure!
The big news today was that Hana’s first biopsy results came back with zero rejection! I hope this is the result she gets for the rest of her biopsies. The big long term problem is actually with the coronary arteries of the heart and is often why a retransplant is necessary. Much of this is not yet well understood so in the meantime Paul and I are going to be making some diet changes. I think we’ve always done pretty well but now we are going to do better.
The other news today was the result of Hana’s tacrolimus (Prograf, her most important anti-rejection medication) blood test which was even lower than yesterday. This is not good. Her levels need to be within the goal range in order for her to be discharged from the hospital. They keep going up on the dose but her levels go down. This actually means that her kidneys are doing a better and better job – so that is a good thing. So, they have gone up a tiny bit again on the dose and will test again tomorrow. It’s really important to get this right!
I am impatient to leave the hospital mostly because Hana must get breathing treatments twice a day while she is inpatient. This is because of the construction around the hospital (for the new hospital) and the spores in the air are very dangerous for transplant patients. The breathing treatment involves holding her down in bed and forcing a mask over her face like you are suffocating her so that she breathes in the yellow vapors of amphotericin. She fights and cries and sputters and gags. It’s awful. Of course, she is too young to understand how she is making it worse.
I really hope she can be discharged Sunday but I’m not too optimistic.
Hana is getting her IVIG therapy today. They are running it over 18 hours instead of 24 so we’ll see how she handles it. Before, when they ran it faster she spiked a fever and everyone got worried so we don’t want that to happen again. Since Hana will have to get IVIG therapy as an outpatient treatment, if it can be done in less than 24 hours then she can go to the short stay unit instead of being admitted to the hospital every time. Hopefully it goes well.
Other than all that we are just waiting around. Hana has started to eat a little. She is definitely showing more interest in food. It makes me want to cry tears of joy. I know a lot of parents stress about their young children not eating very much. Hana has never been an eater. I don’t think she’s ever eaten more than a tablespoon of food (and that was a very rare occasion). I hope she is getting ready to turn a corner!
Today was very busy. It was just one thing after another. Hana had a better but still pretty terrible night’s sleep. I really think it’s the steroids. I’m running on fumes. Hana must be too!
The big thing today was Hana’s first cardiac catheterization. Everyone has been surprised to learn this, but before, the consensus was that it was too risky of a procedure for her old heart. But here we are with a new heart. We took Hana down where they gave her IV versed. Then they walked us to the cath lab which is on the adult side of the hospital. Hana was getting a little droopy and drooling a little in my arms. There we said good bye to Paul and I took her in and laid her on the table where they gave her propofol and I stayed with her until she was asleep. For this procedure they thread a small device into a vein in her groin area that goes to her heart. They measure the pressures of the heart and take four samples for the biopsy.
30 minutes later she was done. The doctor came out and explained the results. The pressures in the right side are higher than a normal, healthy heart (10, versus 6-8). The pressure on the left side of her heart is 20 (they want 8-10). This means that her heart is stiff. We were disappointed until one of the transplant doctors came to talk to us and said the results are what they expected. Hana’s new heart spent 5.5 hours on ice, which is a long time and it may take a while for it to adjust. So, we feel a little better. We will get biopsy results around Friday afternoon.
The other big thing we did today was check into the Ronald McDonald House. It is impressive and beautiful and brand new. I’ll talk more about this later. It feels crazy to be thinking about leaving! Now, we wait for biopsy results. We also have to wait for Hana’s Prograf levels to become stable and then we can e discharged. This could delay us a day or so. Hopefully not!
Okay, so tired, must sleep!
Last night was one of the worst night’s sleep in months. Hana was tossing and turning and crying out. I finally elevated her in the crib more with some pillows and she slept soundly for a couple of hours, which is when I finally was able to get sleep too! Today I felt like I was in a daze!
Around 10:15 they told us Hana’s cath lab/biopsy had been canceled because a child in the ICU needed that spot urgently. I was very disappointed but that is just how things go in the hospital. I’m sure a few times Hana was the one bumping other kids scheduled procedures because she needed something more urgently than they did. Anyway this kind of threw everything out of whack for the day. Eventually, they rescheduled Hana’s cath lab/biopsy for late Friday morning. This will delay her discharge by one day. Now we are looking at Sunday, if everything looks good.
We kind of feel like we are just twiddling our thumbs and waiting. I can’t believe I’m impatient now after all the waiting we’ve done, but the end is so close (at least, I hope). I picked up Hana’s meds at the Kaiser pharmacy and reviewed them again with the transplant pharmacist. The car seat was delivered. We met with the Infectious Disease doctors to go over a few things. I haven’t heard from the Ronald McDonald House yet about moving in. This makes me a little nervous because I feel like there is still a bunch to prepare before we can be ready for life outside the hospital!
Hana has been cranky with GI upset. It’s probably medications causing both. She would only nap while my mom held her and for less than an hour (while I made the trek to the pharmacy). This child needs more sleep! We wheeled her around in the wagon a lot because I was honestly too tired to try to do much else! She did do some smiling today. It’s the first time I’m positive she smiled!
Tomorrow – cath lab/biopsy. Saturday – IVIG therapy. Sunday – discharge from the hospital to the Ronald McDonald House!
We are starting to prepare for discharge on Saturday. It makes me a little nervous partly because I know how much work doing all of Hana’s care at home can be (and we won’t even be at home!) and also because I just want tomorrow’s cath lab/biopsy results to be such so that she actually can be discharged. We need healthy pressures in her heart and no signs of rejection!
Things are in motion. A feeding pump and medical supplies are being delivered on Friday. Thursday I have to go to Kaiser to pick up medications. The Ronald McDonald House has been asked to find room for us starting on Friday. We still need the car seat to be delivered and then get it installed! I need to buy gloves and hand sanitizer and diapers and wipes. We need to bring things from home – a stroller, pack ‘n play and a diaper bag (I have no idea where it is!)
At least this is not our first big discharge. The first time, after we discovered Hana’s heart condition, was a shock. It was learning about medications and medical supplies and tube feedings and cleaning up lots of vomit and being worried that her heart was not well enough for her to be out of the hospital and trying to cope with it all on very little sleep after weeks on intense stress. This should be easy compared to that! I hope it is! Now Hana has a new, beautiful, healthy heart. It is miraculous.
Hana has been very cranky. It’s probably her steroids making her this way. She went to preschool and got to see Jeff the guitarist and her nurse took us to the adult hospital for the music concert. It was classical music and it was the first time I could dance and twirl around with Hana in my arms without getting wrapped up in a driveline. I could just carry Hana around with both arms and we could move freely about. It was incredible. We could go up and down stairs and we could stay outside as long as we wanted. We took her to the cafeteria while we got coffee. But despite all of these freedoms, Hana is often cranky. She will still only nap if I hold her which today was for two hours but if I tried to put her down she woke up. She needed the sleep because she slept terribly the night before.
Tomorrow is the next big day! The catheterization is where they send a catheter up her vein in her groin area to the right side of the heart to measure the pressures. Then they go into the heart and take a handful of biopsies to check for rejection. It will happen in the afternoon (Thursday) and take a couple of hours. We get biopsy results on Friday afternoon.
Sleep is proving to be difficult. Hana had fits of wakefulness in the night. Finally I asked for Tylenol and she slept for 3.5 hours straight. There still has been no nap longer than 20 minutes during the day. It is very difficult to get her to sleep before 10pm because of all the care ordered at the end of the day. We can’t let her sleep late either because of all the stuff she needs to do in the morning.
Hopefully we are only here one more week. We still need to get through her first heart biopsy on Thursday and another round of IVIG therapy over the weekend.
The days get to be long when Hana is indifferent to so many things. We took her to preschool and the playroom for a short time each. I also wheeled her around in the wagon around the third floor over and over again.
She’s still pretty cranky. It could be healing from heart surgery or cranky from being tired or moody from steroids! Her nurse again took us over to the fountain in from of the adult hospital. Hana did a lot more walking and almost running and she almost looked like she was smiling! We still hav to be careful of her falling, especially if she tried to catch her fall – she could really hurt her chest incision (hopefully the staples are coming out on Thursday).
Hana got her pacing wires out and her dressing changed. They started to wean her diuretics. Maybe soon she can be off the monitor or portable monitor and we can take her out of the room, off the third floor and maybe even down to the atrium. That would be amazing. But then again, we have had the privilege of so many amazing things come our way!
200 days in the hospital, 9 days with her new heart.
Last night was a bit rough for me – sleeping didn’t go too well, but it didn’t go too bad either. I think I woke up to comfort Hana six or seven times. Part of the problem is the quiet. You hear every little noise when there is no longer an air compressor in your room. Fortunately, we’ve always used Hana’s white noise machine so that has remained a constant. In fact we are on the second white noise machine, the first one got dropped so many times in the hospital. But if I’m talking about quiet and white noise then things must be going pretty well.
We are chipping away at things in order to get discharged. Her cannula sites need to ooze a little less. She is coming down on diuretics which may need adjustment to other meds for high blood pressure (common for heart transplant). She needs to finish her IV antibiotics. They need to get her tacrolimus (Prograf) levels just right. She’s off her oxygen. She needs to get her pacing wires removed. There are a few more things to watch and do later in the week. There’s a chance that she could be discharged next Monday. I’m trying to wrap my mind around that.
Hana has been more attached to me than usual. She watches me like a hawk to see if I’m going to leave. I get it. I don’t blame her for being like this at all. I also feel that she can be guided to trust again. She’s been through a lot and much of it she’s had to face without me or Paul. I don’t let my heart break about that anymore because there’s nothing I could have done to change it and it doesn’t do any good – I just try to validate, reassure and guide her forward. Right now she needs a lot of cuddling and so that is just where she is in the process, I don’t complain because I enjoy it too!
Of course, you can’t cuddle all day, every day. It seems like that would be the best medicine, but sometimes getting up and moving around is also very important. That’s when you have to push tough love because Hana did not want to get up. It was time today for her to really start moving. They turned off her oxygen this morning and Hana needs to work her lungs. A friend (adult) that Hana loves came to visit and that was motivation for her to start playing and talking a little and she even ate a little food!
In the evening Hana’s nurse, one that she’s had in the past, took us over to the adult side of the hospital to the big fountain. We wheeled her in her red wagon through the empty, Sunday halls to the main entrance. It was her first time outside without the Berlin Heart since mid-November. When we got to the fountain, a place Hana has never seen before, she tried to climb out of the wagon. We helped her out of the wagon and I thought she was going to jump in the pool of water! (She can’t take a bath for at least six more weeks.) Hana has barely stood, let alone walked, in a week but she started walking and almost running around the perimeter of that fountain. She started signing too – water, tree, again, bird, rain – she thought the fountain was rain. She was in awe. She was just amazed and joyous. Her transformation was so amazing, I think we were all teary eyed.
Today Hana graduated from the CVICU and went back to her old room on 3 West (supposedly now known as Unit 374). Her nurse in the CVICU was in training when Hana was there last time and the nurse who got her on 3 West had also been training when Hana first got here. I guess it goes to show how much time has passed because they are no longer new hires.
I think people really worked hard to get Hana back in her old room. We really appreciate that because I think it has made things less scary for her. Her old room still feel quite different because all the decorations are gone, but there is still a familiarity about it. She has also had two nurses that she has not had before (actually she had the night nurse a long time ago during a previous stay) because they are not trained with the Berlin Heart. I think it has been a scary and confusing time for Hana and the more she is familiar with, the better.
Hana got her central line (the IJ, which was in her neck, not my favorite place for a central line) out once she got her potassium and magnesium. In the middle of the night they started a new IV (I wish they had called me to be with her), I guess her other one was just too leaky. So now she just has one IV, nothing else. They’ve been going down on her oxygen and hopefully she’ll be off it tomorrow. Hana is back to her full feeds of straight breast milk. She is refusing to take anything or much by mouth. So, she continues to have her NG tube.
Hana has been a little bit sweaty with clammy hands and feet, no fever, so they are just watching that.
I’m slowly getting a handle on her meds. Some, she probably won’t be on more than a few more days. She still is getting IV Cefapime antibiotic. She is getting a breathing treatment of amphotericin twice a day while she is in the hospital. She is getting awful Nystatin swabbing of her mouth three times a day. She is getting Lasix and diuril enterally. The rest of her meds she will probably be on for a while (or forever).
She’s doing really well! I can hardly believe that a week ago she was getting her heart transplant. It is surreal. It hits me a few times a day and I can hardly believe it. From the beginning, in February of 2015, to now and now she has a new heart, so much has changed. I feel like a part of me has been removed and replaced too. We will never be the same. Too much has come to pass. It’s kind of like when you become a parent for the first time and suddenly you can never be the same person you were before they were born. You can never unknow what it’s like. All of this has been a lot like that, except much, much more traumatic. All of it hasn’t been traumatic, in fact, I’ve never experienced as much love and support, who knew people could love so well?
But we can.
Today has been very busy and has felt long. Hana woke up and seemed pretty cranky, maybe sad and in pain – more like I would expect.
First, her X-ray showed her pneumothoraces are completely resolved so that was great. They gave her regular nasal cannulas and turned her down to 2L. They restarted her feeds of breast milk at only 10mL an hour. She got an IV that wasn’t flushing well taken out of her foot. She got her leaky arterial line out, they were going to wait another day but they didn’t really want her losing any more blood. Her hematocrit was 21 and her hemoglobin was 7.4 so they gave her a blood transfusion.
She got two breathing treatments – one she will get twice a day until she is discharged from the hospital, it’s to protect against the spores that may be in the air from all the new hospital construction. To do the breathing treatment, they hold a mask over her face – she does not like that! The second breathing treatment, pentamidine, is supposed to be administered once a month but we think she had an allergic reaction to it. Hana started to get hives on her neck and then her abdomen and back. They gave her Benadryl and then IV hydrocortisone. Then they wrote in her chart to never give pentamidine again. We were worried that the rash was from the blood transfusion but it started three hours after the transfusion started, so they don’t think it was the blood.
Hana’s blood pressure and central venous pressure has been higher but they think that’s because she has so much more volume from all the transfused blood. She is getting more Lasix and diuril (and therefore more potassium). She looks puffy. She will probably get puffy from the prednisolone that she will need to take for 9 months.
They hope to shut off the milrinone very early Friday morning. After a day off of it she might be able to be moved back upstairs, out of the CVICU, as early as Saturday. Incredible! After that she would be on the floor at least a week before being discharged. It’s crazy to think such a thought.
Today Paul and I started receiving our transplant education. First we went over medications with the transplant pharmacist. It’s a whole new world. At least I understand more about medications in general now. Then we met with the transplant nurse practitioner to start going over care, signs of rejection, who to call, etc. We will have two more education sessions with the NP before being discharged.
Hana drank about 100 mL of breast milk, which I thought was great since she hadn’t had anything since last Friday. She also took her Tacrolimus (Prograf) by mouth again, which continues to be successful, thank goodness. The best thing was I got to finally hold Hana today, it was so wonderful!
Hopefully Hana will be able to get more sleep – it’s hard to sleep in the ICU. She doesn’t seem very happy, more like sad or maybe just in pain, so I hope she continues to heal and fall in love with her own heart. Maybe we could all try to do the same too!
Hana’s breathing tube came out! It went very smoothly! Hopefully they can continue to wean her ventilation so she can start getting tube feeds. Her echocardiogram looked about the same as yesterday. They may even take a few chest tubes out today.
Just a tidbit of information – her donor heart matched her A+ blood type.
194 days in the hospital, 2 full days with her new heart!