transplant – Page 3 – Hana's Heart

Genetic Testing

Posted on May 15, 2015 by katmeander

So, I’m beginning to settle into a reality that Hana will vomit once a day. Since I’ve done so, it feels easier to manage. I will carry towels and a change of clothes (for both me and Hana) everywhere. I started keeping towels and basins handy for the unforeseen vomit. Yesterday she vomited all over me (and herself) while we were out and about and today she vomited on the carpet in her room. I just hope she is too young to be self conscious of it but I’m beginning to think not. Oh, my sweet baby.

Today my big project was chasing down one of Hana’s meds – her Lasix. I reordered it on Tuesday but it was still not ready and I realized I accidentally requested it be mailed to our house. Fortunately, the pharmacy tech only gave me a little bit of attitude about the whole thing. I hate asking for favors, especially when I’m to blame but Hana was completely out of Lasix so it must be done. I’m still learning how to manage all of her meds and I’m still learning the Kaiser system so I shouldn’t be too hard on myself. Right?

The other problem we are running into is our supply of syringes. I’m kind of amazed how difficult this is for people to grasp. I need syringes that can be used to administer meds into Hana’s NG tube. That shouldn’t be anything too special. But I guess it is. Or, it is hard for people to imagine that I’m only drawing 0.7 to 2.4 mL of liquid at a time. A 10 mL syringe is neither necessary or helpful since it doesn’t allow me to measure precise enough. There are more types of syringes than I ever imagined and you pretty much need a prescription in order to purchase them, that’s including the ones that don’t even work with needles! Our current supply we stockpiled after use during Hana’s hospital stay at Stanford. But now the plungers are wearing out and the numbers are wearing off.

The big news today was when the nurse practitioner from Stanford left me a voice message to call her about some new test results. I got very nervous and very confused since I had no idea what results they could have possibly received. It was the genetic testing results that were sent out two months ago just before Hana was discharged from Stanford. They tested 60 genes that they know of to look for the gene mutation that causes dilated cardiomyopathy. They found nothing. This doesn’t rule out genes but it does rule out a reason to do genetic testing on me or Paul. It’s possible that there is a gene they don’t know about. We still need to get our hearts checked every five years. For some reason, the news relieved me. Maybe it’s because I can have more hope that her heart may recover which isn’t really a possibility if the root cause is genetic.

Plan For February 23rd

Posted on February 23, 2015 by katmeander

My dad left last night. I can’t imagine a more difficult goodbye. My mom is still here almost two more weeks. I don’t know what we would’ve done without them.

It took Hana a long time to get to sleep last night, it was midnight before we got to bed. She was still sleeping when I got up at 6:30 this morning. When she did awake around 8am, she was agitated and wanted to sit up. She was obviously still tired. It took a long time to get her to take a nap (which lasted less than an hour). I am so tired. We all are.

Hana seems like a teething, overtired, bored baby agitated by all the restrictions of tubes and wires attached to her. Today they will continue to wean her oxygen flow (she is on 2L). They will try weaning (I don’t know if they actually wean or just stop) her Heparin and start her on aspirin. They still need to get her diuretics right before weaning her down on the Milrinone (I suppose they need her electrolytes better balanced before messing with heart medication). She is getting 40mL of breastmilk an hour, which they will start fortifying tomorrow (for more calories without the volume). They talked about doing another echocardiogram. She has a standing order for Ativan is she can’t get settled. They are giving her Tylenol every six hours.

I heard the heart failure/transplant doctor say that 60-70% of dilated cardiomyopathy cases like Hana need a heart transplant within four months. Some percentage of those will need a heart transplant later in life.

Withdrawl

Posted on February 21, 2015 by katmeander

Today Hana has been very agitated. She has been awake since 6:15 without a nap. She has the shakes and is inconsolable. They believe it is from drug withdrawal from the morphine and Versed. Someone needs to constantly be with her to entertain, distract, console her and she is still crying (a strange cry/whimper like I’ve never heard from her before), kicking her legs and arching her back. We take shifts being with her. I’ve probably spent the least amount of time in her room. Between pumping breastmilk, trying to eat, drink water and go to the bathroom, there seems to be a shortage of time. Then I feel guilty. I am not doing a good job at taking care of myself. I am exhausted and copious amounts of coffee are only doing so much (and keeping me up too late). Thank goodness for my parents and Paul, who is so devoted.

They have her Ativan. Then more Ativan. Then they gave her a small dose of morphine. It wasn’t helping. Her heart rate was really high. Finally, they got the amount of Ativan and morphine right so she could rest. They also increased her high flow up to 10L and they increased her dopamine to 5. We will start again tomorrow trying to wean her off some drugs.

It was a stressful day. Poor Hana was the most stressed. It’s terrible watching a baby go through drug withdrawal. Nothing calms them. I hope her heart can get some rest from the last 12 hours of agitation.

I went for a jog in the evening. I was assured by a number of people that it would be good for me to get out. I need movement and fresh air. I need it to give me the energy to get through days like today – and I have a feeling there may be a lot more days like today. Towards the end of my jog I started to cry and I imagined holding my healthy baby in my arms. It’s hard to find peace and yet, I think if I can manage some moments of peace, I can find some more strength. I might just need to take more deep breaths. We go from holding our breath to letting go of a sigh back to holding our breath. That takes a lot of energy (as does feeling guilty). I need to move breath more freely.

I sat outside the hospital on a bench in my running clothes and cried into my hands. I kept thinking, “My baby, Hana. My baby, Hana.” Then I went inside.

Oh, my sweet Hana.

This is Hana as we are waiting for her new room to be ready:

This is Hana finally resting:

Good Night

Posted on February 20, 2015 by katmeander

Hana was wide awake for many hours today. She spent a lot of the time looking around. We tried to entertain her with toys, songs, games, books, music. She’s not quite ready to entertain herself, it seems. She isn’t quite looking or acting like herself yet. She will look at you for long, long moments.

I’m hopeful and then almost scared of my hope. I need to remain in the present moment. That is my coping strategy. My baby, with a very sick heart, is sleeping (hopefully) down the hall where a nurse is constantly watching her. That is what it is, presently.

I love Hana. She would not fall asleep tonight. Much like it would be at home, on a normal night, I finally had to tell her “Good Night” and leave the room so she would allow herself to fall asleep.

There are so many people to thank. I’ve had people tell me I am strong, if that is so, it is only because I have been carried by all the love, support, help, thoughts and prayers of so many people. Thank you. It has touched us so deeply.

Here are some photos from today:

February 20th Plan

Posted on February 20, 2015 by katmeander

Hana had a good night. Her heart rate is still pretty low but they are watching it carefully and so far everything else looks ok. When her heart rate is a little higher they will start her on beta blockers. For her breathing support, they will continue to wean her flow and hopefully get her on low flow (I think this is what it’s called) by tomorrow. They will wean her dopamine today too. The optimal plan, I suppose, is still to get her on oral medications and bring her home. There is still a slim enough chance that her heart could recover (although probably with decreased function), so we need to give that a try. But the next few days or week might tell us more if that is a possibility or if we need to get a Berlin heart for her or continue to keep her heart until a transplant heart becomes available.

Hana was quite active this morning! We sang and showed her toys. Maybe today we can even hold her.

Big Day Today

Posted on February 19, 2015 by katmeander

Today, after rounds maybe as late as early afternoon, they are planning to take the breathing tube out. They will do another CPAP trial before then just to make sure. This is big. If she can successfully come off the breathing tube, then we continue the course of lowering medications. If not, she may have to get a heart pump (Berlin Heart). After the last drama of this attempt we are all nervous (doctors don’t look nervous, at least).

Maybe I will get to hold her soon. I fear I am forgetting what it feels like to hold my baby.

It feels a bit awkward to mention this, but people have started asking – we have a fundraising page. My friend Alyx started it. When it went live last night I saw people had already started to donate and I cried for a long time. It’s not so much the money I see as it is the love and support.

http://www.gofundme.com/hanasheart

Here is Hana when we were at my parent’s house after Christmas:

CT Scan

Posted on February 18, 2015 by katmeander

So, we were kind of hoping that the CT scan would show something wrong with Hana’s coronary arteries because that is easy to fix (relative to a heart transplant). We knew the likelihood of all this being a coronary problem was very slim. As it turns out her coronary arteries are just fine, that is no longer a hope.

With all the unknowns, my dad keeps asking, “What should I be rooting for?” There’s a very slim, outlying chance that, given enough rest, her heart could recover. Or it could recover enough where she wouldn’t need a transplant for years. The mortality rate for transplant patients increases the older they get, so delaying it seems best. But, because she is so young, if she got the transplant now they believe that there is less chance of her body rejecting the heart, therefore making now more ideal. They don’t have enough data on transplants in infants to be able to say with certainty if now is for sure the best situation. So, it’s hard to know what to root for.

Here is Hana about three weeks ago: