Tired Day

Posted on by katmeander

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.

Outside

Posted on by katmeander

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. 




199 days in the hospital, 8 days with a new heart.

Back To 3 West

Posted on by katmeander

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. 


198 days in the hospital, 7 days with Hana’s new heart.

A Cranky Day

Posted on by katmeander

Things are progressing here, we have nothing to complain about! Hana’s blood pressure has been high, something we are definitely not used to. They started her on a drug to help bring the blood pressure down. It is a very small dose and she may not need to be on it forever. Other than a leaky IV (I think it’s fixed) Hana has been cranky but otherwise doing very, very well.

Balancing meds will continue. We have to learn all over again! Two meds must be handled with gloves and two will need to be crushed every day. The rest are pretty straightforward, well they are if you are used to a lot of meds, which we are.

We continued our transplant education today, it’s a lot of information. Paul and I both got to hold Hana, it was great! Hana may move out onto the floor tomorrow, if they have a room available. After a week or so out on the floor, then we get to move to the Ronald McDonald House for three months. After that, we get to go home! One day at a time though. I am so grateful for today!!!

Okay that’s all I have now, I’m falling asleep writing this!

A Long Day

Posted on by katmeander

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!


196 days in the hospital, almost 5 days with her new heart!

A Quiet Day

Posted on by katmeander

There’s not much going on for Hana today. The highlight was they pulled all four chest tubes and doing so created a pneumothorax on both the left and right. Basically, air is trapped between the chest wall and the lung. This can cause her lung to collapse. They do an immediate chest X-ray to monitor. They also watch Hana’s breathing and they turned her hi flow oxygen up to 8L, which also means they had to stop her feeds. She was getting a very small amount of feeds but she can’t get anything in her stomach until her Hi flow is turned down to 4L. The surgeon was very concerned about the pneumothoraces and wanted to put chest tubes back in right away, but another chest X-ray showed that the right one had already resolved and the left one was almost gone. 

Other small details – they’ve shut off the pacemaker and Hana’s heart rate has been around 120. She is taking one of her medications by mouth! One immunosuppressant, Tacrolimus, can not be given through Hana’s feeding tube because it adheres to the wall of the tube. It must go in her mouth. She was so thirsty that she licked it right up. I’m relieved because I thought for sure this was going to be a struggle or that she would just gag and vomit every time. They are turning off a lot of Hana’s drips. She’s still on a little epinephrine and milrinone, but those might be shut off over night. She is still getting infused Lasix and therefore, potassium because the Lasix depletes her potassium. They dropped one of the antibiotics because her MRSA results came back negative. She will get another dose of the immunosuppressant, ATG, the fourth in a series of five doses. The list of other immunosuppressants is already getting long – prednisone, Cellcept and three more added today to the Tacrolimus I already mentioned.

Hana has been VERY quiet. She lies in bed and looks around. Sometimes she looks at the tv or iPad. Sometimes she looks like she is about to fall asleep. Sometimes she makes eye contact. She doesn’t seem happy or sad or frustrated or listless. I don’t know what to make of it. Sometimes I wonder if she is maybe a little bored or depressed but maybe not.

If everything goes perfectly, she may get to get out of the CVICU and go back upstairs as soon as this weekend!