Month: November 2015

Today they finally did the bronchoscopy, where they take a small camera, go down her breathing tube and take a look at what’s going on. They saw that her left bronchi is completely compressed high up, which basically means they weren’t able to get very far into her lung to see what is going on further down the lung. They tried proning Hana, putting her on her stomach, to see if the weight of her heart off her lungs made a difference to that airway. It didn’t. They did see that the bronchi is pulsing which means that her heart or a pulmonary artery is pressing on it. They are going to take a CT scan to see what else is going on.

The big difference between this bronchoscopy and the previous one is that before, they were still able to get down her bronchi to see more of her lung. So, something has changed – one thought is that her heart has gotten larger, but we won’t know until they do the CT scan.

Hana needs your thoughts and prayers.

Here is a loving kindness meditation my aunt sent:

May Hana be safe and protected.

May Hana feel blanketed in love and kindness.

May Hana breathe with ease and comfort.

May Hana’s loving heart be strong and healed.

May Hana be free from suffering.

May Hana’s joyous laughter flow into the world.

May Kathleen and Paul be surrounded by love, hope, and strength.

May Kathleen and Paul find courage and clarity.

May Kathleen and Paul be free from suffering.

May Kathleen, Paul, and Hana grow in joy and peace as a family.

Babies come into this world more or less powerless. It is up to us to help them discover their own power and to experience their free will. Perhaps we can all visualize Hana experiencing her power and free will, even as she lay sedated and on a ventilator.

People have asked if they can send cards. Please send them addressed to Hana Yago,

725 Welch Rd, Palo Alto, CA 94304

Thank you.

  

Today Hana’s X-ray looks worse. This has been disappointing for everyone.They tried a CPAP trial last night and it seems to have made her left lung worse. The attending physician said it would be unconscionable to try to extubate today. They do want to try another bronchoscopy, which they’ve been saying for days now, they just haven’t been able to get one scheduled. It seems that pulmonary should be fully staffed tomorrow so it won’t be a problem having it done tomorrow. With that, maybe they can clear out her lung and take a look and maybe we will have more answers. But it may just be that her heart is too large and is pressing on her lung too much. Some of the risks that are being mentioned now are the risk of pneumonia and deconditioning Hana’s ability to breathe in her own. There is always the risk of infection from being in the hospital.

Tomorrow we will restart the transplant evaluation process. 

If her lung starts to look better in her X-ray tomorrow there is still a chance that they could extubate tomorrow. It’s been hard to watch Hana in the hospital bed doing so little, day after day. We are just trying to stay positive.

  

Hana’s X-ray looks the same. She also had a fever in the night of 102.2. This morning she threw up some mucous. She had 120mL of air in her stomach. They are going to preemptively start her on a stronger antibiotic for an infection in the lower lobe of her left lung. They want to do another bronchoscopy today but it won’t happen until tomorrow. They talked about extubating tomorrow but maybe they will wait another day after the bronchoscopy.

They hope to have her on BiPAP after extubation. They said that she may not regain function in the lower lobe of her left lung because her heart may just prevent it from clearing up. They are proceeding cautiously but the attending physician said it will probably be a rocky road with many bumps along the way.

Today already they advanced her breathing tube a couple of centimeters. They had to give her vecuronium again to do that, to keep her still, but this time she did not seem to have an elevated heart rate or labored looking breathing. Hana has seemed more “awake” today – responding more but without thrashing around. I imagine she is not feeling too great with her fever. Cold towels on her head seem to keep her temperature more in the normal range.

I hope we can move forward!

  

This morning, Hana’s x-Ray looked the same. This is very discouraging. Each day they have to increase her sedation as she becomes more and more tolerant. The attending physician this morning felt like her increase in heart rate and respiration rate, while still within normal limits, was an increase from what we’ve seen from Hana and is therefore significant. They wanted to get another bronchoscopy, but that didn’t happen today. They ordered a CBC. They are starting to think of things other than a UTI and rhinovirus that would be keeping Hana stuck where she is for so long. There were a few tense moments when Hana’s heart rate soared – over 180. Once they were changing the dressing on her arterial line prior to which they had given a paralytic drug to keep her still. Then her breathing became labored and her respiration rate went up. The second time was right after a respiration treatment – Hana got agitated and had more than 170 mL of gas in her stomach. She threw up a little. She recovered from both, but they stressed me out for a while.

I often feel weary of waiting and stressing. I worry what will happen if this drags on another week or another week or another. What if her lung just can’t get better because of her heavy heart?

Someone recently told me that people used to describe her as a strong person. I’ve heard that about myself too. But this woman finally had to ask herself, “What kind of strength do I have?” She answered herself – she had strength in negativity, she was stubborn in many ways. I have to ask myself the same thing. Am I strong in worry? I like to be prepared. Maybe I am trying to prepare myself for a worst case scenario. Am I strong in worrying about worst case scenarios?

I want to be strong in peace with what is – Hana has a lung that is healing, she is breathing with the help of a ventilator, she is on several drugs for sedation, her heart and things related to keeping her body chemistry balanced. Hana has a very large heart that needs drugs to help it pump effectively. She is recovering from a UTI and rhinovirus. That is what we know.

I also know that Hana is feisty, even when sedated. She is cute and sweet looking. I love her and I’m grateful to have her in my life. I would only wish that we all can know what that much love feels like.  

Poppy came to visit us!

 

Hana apparently was flipping around in the night, so they are working to get her sedation right today to keep her more calm. Her potassium has been very low and that affects heart function, so they’ve been doing a lot of replacement. The diuretics Hana gets can cause loss of electrolytes, including potassium. Other than that there are no other plans today. Her chest X-ray looked a tiny bit worse this morning. They will not position her prone again today because they feel the risk of moving her and irritating her trachea with the breathing tube is just too great.

I talked with Hana’s heart failure/transplant cardiologist this morning and he agrees with me that it is a good idea to get whatever tests they need that require intubation for her transplant evaluation. Those tests include a CT scan to look at the anatomy of her blood vessels and possibly a cardiac catheterization. Hana would need to be intubated for both. I don’t want to go through intubation and extubation more than necessary! 

We will have a quiet Thanksgiving in the hospital.

  

Today ended up being a quiet day. After Hana’s initial fever, the nurse took the ice packs away when her temperature went back to normal. It never got high again. We had a great day nurse who was on top of every detail. Hana was mostly quiet with just a few thrashing episodes.

I was able to get bills and other administrative stuff done. I even left the hospital to go to the bank.

Today the heart failure/transplant team (the P.A.C.T team, Pediatric Advanced Cardiac Therapies team) had a meeting. One of the cardiologists tracked us down afterwards to talk more about transplant. They seem to believe it’s about time to re-evaluate Hana for the transplant list. We started many parts of the evaluation process back in February but I guess we will need to go through it again. I’m starting to feel better about a heart transplant. Before any of the process can begin we need to get Hana over this virus and back to relative help.

This evening we talked with a woman who is here with her seven year old son from eastern Oregon. He had a pump put in place and when he recovers he will go back on the transplant list and wait here for a heart. This woman has five kids and this is her youngest. Her oldest and her middle child have both had heart transplants. In fact, her oldest just had her second transplant in June. They have spent many, many more months in the hospital. Their kids lived in the Ronald McDonald house and went to school in Palo Alto. I am in awe of her. She has a good attitude. Her family seems to have done well through it all, in fact she delivered one of her kids here because they were here so long waiting for a heart. Her kids diagnosis was dilated cardiomyopathy, just like Hana. Genetic testing came back negative.

The goal is to keep Hana comfortable quiet and consider extubation tomorrow or Friday. They have her prone again in hope to get her left lung sounding even more clear.

  
  

This morning Hana had a fever of 101.4. They say it could be caused by her blood transfusion, the collapse of her lung after extubation or perhaps an infection of her PICC line. The last one scares me the most. They are switching as many mess from a drip to enteral (she will get them through her NG tube) to avoid having to open up access to her PICC line. It’s been a disappointing morning. Her nurse put ice on her and her temperature did drop. They are going to wait to start another antibiotic for possible infection but they did send off blood cultures.

She slept okay but has been waking. She is still on milrinone, precedex, versed, and ketamine. She has finished her steroid treatment. Her X-ray looked better today than yesterday after extubation. Today I have to get some regular life stuff done but then hope to sing and read to her. They may still extubate tomorrow, or maybe even wait until Friday.

Let’s pray for her temperature to stay normal and not be an infection.

  

They extubated around 11:10, after Hana opened her eyes. They had her on high flow nasal cannula and then switched to the mask. They started to hear a stridor and wheezing. They kept checking and checking. The doctor did not leave the room. They tried some steroids and other respiratory therapies. They gave her precedex. They tried suctioning through her nose. After that her O2 dipped down in the 50s. 

For a little while it looked okay. I felt lightheaded so I got a drink. Then it just got worse. Hana was working harder and harder to breathe. Her heart rate was creeping up. Then it got nerve wracking. People start hurrying around and calls were made. Then you see Hana really struggling to breath and I started to cry a little. 

The respiratory therapist had the bag going and things were holding steady for reintubation. I was so upset and scared that I left the room when there was no more room for me at the bedside. I cried in a little room just outside the pod (the room Hana is in with six other patients). A respiratory therapist brought me tissues and water. I kept poking my head in to read the monitor with her heart rate, blood pressure, respiration rate and O2. But I was also reading the look on the faces of the people surrounding Hana’s bed – they looked calm. The senior CVICU Doctor did the reintubation. She is amazing. She was the one who admitted Hana and she has the touch like a gentle mother.

So, it was a step back. Pretty much what happened was that Hana’s airway started to swell when the breathing tube was removed. It was very scary. This is what happened the very first time they removed her breathing tube back in February. I ask myself how much of this can we handle? I have thoughts of Hana dying and then I immediately feel guilty and terrible. I felt that when I stay by myself near the room, but not in the room, I could think more positively and visualize positive outcomes.

Hana is getting steroids for the swelling. They will evaluate and maybe try extubation again on Thursday.

 

Hana was very restless over night. They gave morphine and versed drips and ketamine. She is still thrashing about this morning. We woke up and hurried this morning because they were going to start the extubation at 7:40. Hana’s blood count was low this morning, they are not too worried as they think it may be from so many blood draws. They decided to do a blood transfusion before extubation, to boost her hemoglobin. They have to follow special protocols because Hana is a possible transplant candidate. We are waiting for the blood to come up – I guess it takes a while to scan. Then half the transfusion will take place over an hour and the other half over three hours.

I think it will be early afternoon before extubation. We have the same day nurse as yesterday. She has many good qualities I just wish she were more attentive to some details. It has been a full time job holding Hana still! 

  

They turned off Hana’s morphine drip and her propofol around 2:40, in preparation for her extubation. They wanted her to be awake, eyes open, breathing on her own and not still in a deep sleep when they took the breathing tube out. Well, she started breathing on her own. She started squirming around a lot. She just didn’t really open her eyes very much.

We waited. By her bedside was the Nurse Practitioner, the nurse and the respiratory therapist. An hour went by – the NP started doing her notes nearby, the nurse went on break, the RT went to attend to another patient. Another hour went by. The attending physician wanted to wait until morning to extubate so that everyone who might possibly be needed were nearby. So Hana did not get her breathing tube out!

The next attending physician that was on explained that some kids just take that long for the morphine to wear off and we should not worry. They started her back on the morphine drip right around 6:30 at which time Hana started to open her eyes and look at us. They decided to give her versed as needed to help with her thrashing about. I was peeved with the nurse who seemed not attentive to Hana’s thrashing around. Her art line started to bleed. She knocked one of the caps off her drip into her PICC line and dripped a while onto her bed before my mom noticed. She almost pulled her NG tube out. She was knocking the breathing tube all over the place. I felt kind of stressed trying to keep her still and I was uncomfortable because I don’t know how careful I need to be with what and there are so many tubes and lines it gets crazy.

I’m kind of exhausted today! But hopefully the breathing tube will come out tomorrow with no problem! They are stopping the morphine and versed at 6:30 am and they didn’t start up her feeds tonight so she will be ready for extubation in the morning and we will have all day to see it happen.

Below Hana was holding onto the suction thing they put in her mouth to suction out the spit (just like the dentists office) but she wouldn’t open her eyes!