Hana slept restlessly again last night. She awoke at 5:15 and finally fell back asleep at 6:45. This means that I was up at least once an hour. I was planning on getting some rest, maybe a nap, when Paul got here. But that didn’t happen either. Instead we were given the option to pack up and move to a bigger room.
I’ve been eyeing this room for weeks. The nurses keep telling me it’s the “big room” or “the one for the Berlin Heart patients “. Every time I see it empty I wonder if they are going to move us. But they don’t. Until today. It was very slow on 3 West and the nurses who know who to talk to were able to get us moved! Actually I think everyone was pleased to see us go to the big room. Several people helped us pack up and move.
Unfortunately, we have accumulated way too much stuff and some of it junk that no longer has purpose to us. The new room was s wreck! It took me an hour to find my cell phone. Fortunately, our friends Judy and Lou had both decided to visit today so they were able to help unpack. We have most of the stuff put away and a lot of stuff hung up but there is still more decorating to do!
Our new room is great! It is really big (to us). The best thing is that the view from the window is awesome! It overlooks the front of the hospital so when Hana stands in the window she can see cars and people and trees and grass – she can see what the world is up to! This makes her very, very happy! Before, the window faced the cancer center. Best of all, when Lou brought Poppy with her to the hospital, Paul and I took turns going outside to visit with Poppy and we were able to wave to Hana in the window. It was great!
Here are some pictures of our old room – new room pictures will come soon!
Hana has not been as happy this week. I’m hoping it is just teething and not that she is bored or an upset stomach so much of the time. She does seem to be sleeping a bit better, overall. Last night she did throw up in the middle of the night, so I don’t know what that is about. Blood work and the dressing change went fairly well this week but Hana complains a lot more than she used to. She is also afraid of every person that walks in the room unless she knows them and they are not here to poke or prod her. It makes me a bit sad to see this but I hope we can teach her to trust people again.
We have been trying to change up the room, get out of the room, invent and do new things. It has been challenging! Hana’s new park is the small atrium in the middle of the hospital. Her new playground is the trains. I hope she doesn’t get too bored of them too quickly. I contemplated purchasing a little slide with steps that folds up but I don’t know where we would put it! It is hard enough to move around in this room as it is!
I’ve been trying to get out more, during Hana’s naps. It is hard! She seems to know when I’m giong to leave and she wakes up very early from her nap! Yesterday I went for a jog and they called me ten minutes after I left to come back. I’ll keep trying, hopefully we can get in a better routine. It’s interesting how life really forces you to deal with your issues too. I definitely have a hang up about never having enough time and asking for help. Now, I have less “time” than I’ve ever had and I’m forced to ask for help!
Yesterday, the man, Jeff, who plays guitar for the last fifteen minutes of pre-school every Wednesday, came by Hana’s room. He played for fifteen minutes. Hana was mesmerized! She clapped and danced a little, but mostly she just watched him transfixed. Somehow she is not that impressed when I play the ukulele. I hope she has more opportunities to see such things!
It was a month ago, Christmas Eve, that Hana was transferred to 3 West from the CVICU. She turned 17-months this past week. Things are moving along. The IVIG therapy was relatively uneventful other than a teething, very fussy, very bored 17-month old had to stay still for 24 hours. That’s kind of hard and requires marathon patience. She did throw up a lot. I think our day nurse felt bad for me but it was okay. Part of what made it okay was I knew that on Saturday night we were going home to sleep (and see Poppy). Although the night the IVIG was running I got pretty good sleep and probably only had to get up six times.
Now we are trying to figure out the sleep/vomit thing. Hana’s sleep is often disrupted and she is puking a lot. Now we try to balance fluid volume/calories/meds so she doesn’t vomit and checking vitals/taking her weight/checking the Berlin with letting Hana get sleep.
It was amazing to be at home and see Poppy. It’s always a little sad – like when I see Hana’s raincoat I bought her two days before being admitted to the hospital and knowing she most likely will never get to wear it (at least not outside in the rain).
Keeping her occupied Watching Signing Time Getting ready for bed
I’m going to keep this short because I’m so tired! Hana is doing really well, despite the fussiness. She has a lot of teeth coming in right now, luckily the molar is mostly poked through the guns, but the rest are coming in slow. Hana is off of Ativan and still weaning methadone. No preschool tomorrow because she will be hooked up to her IVIG treatment. They are running it slower this time. Also she can’t stand this time (I should say not allowed) because her IV is in her foot!
Sh had to be stuck three times! The first IV went bad (infiltrated). So, Hana got stuck three times and had another NG tube get placed today!
Okay that’s all for now because I’m falling asleep while trying to write this!
Hana continues to do well. I’m starting to feel better myself. Right now, Hana seems to be getting three teeth at once and one of them is a molar so there is quite a bit of fussiness. She is only allowed to get Tylenol to help with the teething. Today she also had more bloodwork and hopefully we are getting on a more normal routine although one of her levels came back high so they may have to repeat one test tomorrow. They did decide to test her BNP level, which is a measurement of heart failure (although not a very reliable test in children). Hana’s was 388 which is the lowest it has ever been since we discovered her heart condition.
I would love to get out more, but it has still been difficult to find the time between napping after very poor sleep, eating and pumping. Also, someone really needs to be in the room with Hana all the time so it is hard to ask a nurse, especially when they are busy, but I do otherwise I would never get a chance to run to the kitchen for food!
I am trying to create a really healthy environment for a budding toddler. It is very challenging! There is only so much we can do and only so many places we can go so we have to really get creative to make the most of it. I bought reusable stickers to put on the windows both in our room or to take with us on “walks” to change up the routine. I have bubbles to blow outside and balls to throw in the fountain. I think I’m going to try “scavenger hunts” by putting temporary stickers from our favorite books up on the walls in the unit and going around to identify them. Hana is not doing crafts or coloring yet and she is not allowed to go to the playroom. I am rotating through the toys so that they seem “new”. If you have any ideas, please let me know! She LOVES to watch other kids. She loves to be outside too, but that is limited, especially when it rains.
Today the grandmother of one of the babies that was in the group room in the CVICU with us stopped me. Sometimes she does not make a lot of sense and I’m not sure why. Her daughter doesn’t always make sense to me either. She has been living in the hospital since the end of July when her daughter, Promise, was born with Hypoplastic Left Heart Syndrome. Promise has not been doing too well lately. Today, the grandmother told me that Promise passed away this morning. I was very, very sorry to hear this. I hope I understood her correctly this time because I was a little puzzled as to why she was still at the hospital at 5:30 pm but I have no idea what happens after a child dies in the hospital. I hope sweet Promise can now rest in peace.
I am sick with a bad cold. I suppose it was inevitable with the lack of sleep, but I have become a bit more lax in the hand sanitizing since leaving the CVICU. It is a good reminder to get now versus post-transplant but practicing good hygiene is so crucial. It is also important to take care of myself which is incredibly difficult. But, as Hana’s primary caretaker the stakes are too high to gamble with my health because that is ultimately gambling with Hana’s health.
People really like to tell me to take care of myself which almost makes me mad to hear. I would love to take care of myself! If someone could just figure out how I could get the time to do that I would be grateful! Honestly, this week has been the first really stable week in Hana’s time here so I do finally feel okay about stepping away and taking care of myself. I just need to get a good night sleep or more sleep. My brain is not making sense – yesterday I tried to put Hana’s hand in the buckle instead of the actual buckle.
Fortunately we have amazing friends. Our friend Judy came down and spent the night with Hana last night and tonight our friend Lou is staying the night! Last night, after sleeping in my own bed, I felt like I slept on a cloud (that really was my first thought when I woke up). Other friends are sending food which has been so great. We’ve also been getting a fair number of toys which really helps to break up the monotony! I wanted to be a minimalist parent when it came to toys, but having rotating options has been very helpful.
I really hope Hana does not get my cold because then she will not be allowed to leave the room!
This week has been about going to PT/OT, preschool, going on walks, and trying to get on a sleep schedule. Hana is now on her goal calories of 30kcal/oz for her feeds. She is still getting continuous feeds which is very inconvenient to carry the feeding pump around (another tether!). I am going to push for trying bolus feeds again next week. She has started drinking again – about 4 ounces a day! She is also interested in food and has been doing a lot of food exploration! Hana is still weaning off her methadone and Ativan. Most of her other meds are pretty much at her goal dose although there will be some tweaking as we go on her anti-coagulation meds.
Hana has been happier than I have ever seen her. The Berlin Heart has allowed her to feel better than maybe she’s ever felt. We have so many things to be grateful for! Thank you!
Hana watching Signing Time Good Morning pre-school
Below is a link to a Dateline story about a family we’ve met here at the hospital. I mentioned them when we met the mom, Stacy, in the Transplant Talk post. Three of their five children have/had dilated cardiomyopathy and two have already had heart transplants. Their oldest, Sierra, has had two heart transplants. Their youngest, Gage, is currently on a different ventricular assist device (VAD) than Hana. Gage has a much smaller device and is able to leave the hospital to live at the Ronald McDonald House while he waits for his heart transplant, but his sister Lindsey was on the same Berlin Heart device that Hana has.
This story tells and shows much of what our life is like here (minus the huge additional stress of having multiple children with life threatening heart conditions). The doctors, nurses, rooms and hallways are all too familiar! I see Stacy sitting outside the hospital school on our way to and from PT/OT every morning.
Here is the link to watch Dateline: Against The Odds. According to Jason and Stacy’s blog, their will be a second Dateline show airing on January 17th (10 pm Pacific, 9 pm Mountain, and 7 pm Central and Eastern).
Hana is doing well! She is teething and still waking for hours at night but otherwise really well! Things are starting to fall into a rhythm.
One Nurse Practitioner said that sleeping (as a parent) in the hospital was like having a newborn. She is right. Although I think most of the night nurses do an excellent job of sneaking in and out of the room and clustering their care, but Hana still wakes up! To me, the most ridiculous thing is to weigh the patient before night shift is over. Who wants to get woken at 6:30 am or earlier to be stripped down just to get weighed? They have grown more lax about this and Hana gets weighed later in the morning. Thank goodness!
The hardest thing in all of this is Hana just waking for no apparent reason. It seems we get one good night a week where she sleeps pretty well. The rest of the time she is up for hours and hours before falling back asleep. Last night, Hana got a blood transfusion (which meant a lab poke in the morning for blood work whose results led the doctors to order a blood transfusion and then another lab poke to type her blood and start an IV to receive the blood). Two hours into the transfusion, Hana woke up and became playful and agitated. She was up from 10 pm to 2am. I had to stand over her crib watching her because she wanted to pull her IV out. So, Hana was cranky today. Otherwise, things have been moving along and we are trying to settle into some sort of routine or rhythm.
At the end of the IVIG post, I mentioned I had something exciting and special to share to Hana. I’ll tell you about that here, but first, I’ll give you an update on how she is doing.
Hana’s fever broke and things got much better. She was still kind out of it the next day, but she also didn’t really get to sleep until 1am the night (morning) before. She mostly acted like she was sick and not feeling well. After her afternoon nap she was back to her usual self! They continued the IV antibiotics and one antibiotic, Vancomycin, requires a blood test before the fourth dose to make sure it isn’t taxing the kidneys too much. I knew earlier in the week they were a bit concerned about her kidneys already because of a high creatinine level.
So, this required another blood drawl which was totally botched. A flex nurse came to do a heel stick and was not able to catch the blood in her tube for collection. They tried to get someone from Vascular Access, but they all seemed to be gone for the day. Then they tried to call the lab to get someone but by then it was 8:30 and the blood was supposed to be drawn at 7:30 and the fellow that was on that night said that we missed the window to get the blood draw and the results would not be accurate. Instead she was going to give the Vancomycin dose anyway and then do the blood test before the fifth dose. Unfortunately that would mean a blood draw at 4am.
I was not happy about it but I was worried about Hana’s kidneys. The nurse tried to press the fellow to wait until morning but she said no. Hana has done fine on Vancomycin before. So, at 4am the phlebotomist came and woke Hana up and drew blood. He actually got it right away so that part was fine but Hana was still crying and lightly screaming and then did not go back to sleep until 7am. I was so tired! I felt terrible that Hana had to put up with all that. Then, the results came back with an utterly ridiculous value of 62 (I think they were looking for something to be 4-6, whatever that means, I don’t know). The team, when rounding in the morning, were appalled at the whole story.
I wish I had known better, but I didn’t know enough to push back. In the end they decided to stop the antibiotics all together.
On to the surprise for Hana. I want to start off by saying we have received many, many wonderful, generous and heartfelt surprises, including ones from strangers. For example, the husband of a friend from college stopped by on Saturday with milk (my request!) and some really awesome toys for Hana which she loved! Or the amazing Christmas tree created by the students at Leach School in Delaware or all the handwritten and handcrafted paper Christmas ornaments created by children from all over including what seemed to be, every student at Parkersburg Catholic High School. But the surprise we got Thursday was really different from anything else so far.
As some of you may know. Hana loves Baby Signing Time – a show that teaches babies and really young kids sign language. It has great music and is really well done. It is a spinoff of Signing Time, which was a show on TV for older kids. The woman who does the show, Rachel Coleman, also did a show called Rachel and the Treeschoolers, which Hana also loves. She watches them all the time to calm her down. We play them on the iPad when she is getting blood draws, echocardiagrams, shots, dressing changes, etc. She watched them to keep her calm so she wouldn’t throw up during tube feeds at home and also to keep her occupied when we had to patch one of her eyes for an hour a day. They work like magic. We were introduced to Baby Signing Time by some friends from college who bought us the DVDs. I don’t know what we would do without these shows. I tried other shows and they just haven’t worked!
Well a very special friend of Hana’s decided to contact Rachel Coleman to tell her how much her shows meant to Hana and that she watches them everyday in the hospital. So Rachel recorded a personal video message to Hana and sent it to us! In the video she talks to Hana and walks through the studio and backstage and shows some old props and outfits from the episodes. It was really awesome. When I showed it to Hana she was mesmerized with a concentrated look on her face trying to figure out how the woman from her favorite shows is on this video talking to her. It was very, very touching. I cried. Paul was amazed. Rachel Coleman is obviously someone really dedicated to children, generous with her time (she is also sending Hana episodes of Signing Time) and a genuinely good person. It meant so much to us. Rachel has one daughter who is deaf and another daughter with cerebal palsy.
If you have kids I highly I highly recommend her shows. They are not only educational but they teach about kindness and include really great music. Thank You Rachel Coleman!
Hana watching her video from RachelHana watching Rachel and the Treeschoolers
Day 53 in the hospital, Day 35 post-Berlin Heart, Day 26 on the transplant list.
Hana had another rough night and was up from 2-6am. Then we had to make her get up for PT/OT. She perked right up and we had a good morning. Her IVIG ended at 10:30, after which she needed bloodwork. In the afternoon she took a long nap. We finally woke her and took her out with the nurse to the library. She was not excited to get out and threw up in the library. Then we took her to the outside atrium and she was cranky and wanted to sleep. Something wasn’t right.
Back at her room they took her temperature and it was pretty high. Her heart rate was high and she had intermittent labored breathing. That’s was things started to tumble down. Doctors and nurse practitioners started showing up. She had multiple blood draws and 4 attempted urine catheters. They started IV antibiotics and she got a chest X-ray. They mentioned going back to the CVICU.
I’m too tired to tell the whole story but it was very tense and I cried and then they finally decided that it was most likely a delayed reaction to the IVIG. We were all stressed and worried. We didn’t really get a chance to even eat dinner! My mom leaves in the morning and it is going to be hard not to have her help (and of course we will miss her).
Hana's Heart 