Month: December 2015

They still have not retrieved the bed for the first surgery patient. Once they do it should be about 45 minutes before Hana heads down to the OR. So it will be at least 12:45 now.

Not too much has changed since yesterday. Hana’s heart rate was getting high in the evening but the attending physician assured me they would be watching Hana like a hawk – he also happens to be the head of cardiology. Today they did rounds without me because it was so quick and they made no changes. Hana is on versed, precedex, morphine, dopamine and milrinone. She is getting tube fed a lot – 50mL/hour. We are just waiting for Monday.

We are trying to let Hana rest so we try not to stimulate her. She isn’t waking up too often so there aren’t too many opportunities to talk to her. We did do a little decorating in her room, hanging up some of the cards people have sent.

Last night, Paul and I went home for a few hours to get some things together. It was strange and sad being at the house. I wondered what things Hana would outgrow before we were home again. It was too quiet without Hana or Poppy. It felt like we were moving away.

Hana’s surgery is tomorrow at twelve o’clock. She was supposed to be the first case of the day but now she is the second case. The start time really depends on when the first surgery ends. I will try to post as often as possible. We are scared. I try to not get to overwhelmed with am trying to live moment to moment. I want to be an example for Hana of faith, hope, love, knowing my own power, seeing beauty, living beautifully, and accepting the love and support from so many people.

  

The goal of this weekend is to keep Hana steady and stable for her Berlin Heart surgery Monday morning. We met with the surgeon yesterday – he is also the one who will do Hana’s heart transplant. Whenever a doctor has to talk to you about a procedure they have to tell you about all the possible risks – so it was a little terrifying yesterday to hear about the Berlin Heart. One thing the surgeon is concerned about is the fever that Hana had yesterday. If she has a fever they can not do the surgery. They want her to be fever free for 48 hours. If she has a bacterial infection they can not do the surgery. 

Yesterday they stopped all of Hana’s sedative drips because she seemed overly sedated and her heart rate was getting way too low. She still had a clonidine patch that was starting to kick in. Eventually they took that off too and Hana was not getting any sedation but was still very, very sleepy and still. The problem with this is Hana will eventually wake up and need sedation but also that she will start to go through withdraw again and that could cause her to have a fever which could delay her Berlin Heart surgery. So, the dance right now is upping Hana’s sedation as she starts to withdraw but not so much that her heart rate drops too low.

They also think the ketamine Hana was on before was causing delirium which was agitating her which caused them to increase her other sedatives.

I feel like I know a lot more this time around in the CVICU. I also feel more confident in asking questions. But I think I need to be even more aggressive. These are smart people with medical degrees and lots of training at some of the best places in the country. When they don’t discuss something in rounds I often assume it’s because the answer is so obvious that it’s not mentioned, but this is not always the case. I’ve started pressing them more, especially the fellow who needs to be more aggressive. I see things he doesn’t, I think he needs to pay more attention to how Hana looks instead of just going by the numbers.

  

This morning, just like every Friday morning, the heart failure/transplant team met. It is a team of physicians, surgeons, Nurse Practitioners, social workers and more. The CVICU physician that was on over the night, joined them today to add his account of how things went last night.

They decided to recommend the Berlin Heart for Hana. They also approved her to be listed for transplant. Both these things are huge, heavy decisions. The Berlin Heart is a ventricular assist device – basically a pump to help Hana’s heart. It requires major surgery to implant and certainly comes with risks – mostly risk of stroke. With this device they hope that her heart will shrink enough to allow her left lung to inflate again.

Once you get a Berlin Heart you must stay on it until you get a transplant. Once you get a Berlin Heart you can not leave the hospital. They want to implant the heart early next week unless things degrade over the weekend. So what this all means is that Hana will be in the hospital until she recovers from having a heart transplant. Then we will have to live at the Ronald McDonald House for three or more months before we can go home. Once Hana recovers from the Berlin Heart surgery she will be listed as a status 1 on the heart transplant list, meaning they are the first patients on the list to match a heart when one becomes available.

Today Hana is relatively comfortable. She has a bit of a fever and her heart rate is high. They are starting another antibiotic and increasing her milrinone. She is also getting another blood transfusion.

This all weighs very heavily on us and will take some time to process. We have been so amazingly lucky to have so much support. We are so grateful. Now, things feel more fragile than ever. Hana is such a little trooper, she amazes me!

  

Hana had a rough day – fast heart rate and respiration rate. We were very nervous and stressed all day. Her “regular” heart rate just kept getting higher. We tried to calm her in her withdrawal but her heart rate was hanging around in the 180’s and 190’s and her respiration rate in the 80’s. We tried holding her and rocking her. They set up for reintubation. Her stats were making us all very, very nervous. They tried giving versed. It didn’t help. They tried giving morphine but that didn’t help, Hana was just too exhausted. Of course any emergency reintubation during the night when they don’t have everyone possible around made us very nervous. We know the risks of reintubation – Hana’s heart just may not make it.

We stayed in the room for the reintubation and held each other. The attending physician was very familiar with Hana from her time in the CVICU in February. He led the team through the intubation in a very calm manner. It was very reassuring. The nurse practitioner did the actual intubation. The intubation actually went smoothly and easily and without a hitch. 

This is a major setback. Maybe we will have more answers tomorrow. The doctor strongly recommended that we get sleep tonight. I have a lot more I could say but we are too tired.

  

Hana’s withdrawal seemed to be under control until about 4am, after which her nurse could not leave her bedside. Hana is rolling around and thrashing and crying like a cat. Her lips are very dry. She is acting crazy for something to drink. She tries to grab the diaper wipes to put in her mouth to suck. The pacifier has been working ok, at least it keeps her from crying so her throat can rest. It takes two people to handle her. There is sitter who I’ve seen around helping to rock babies, who is helping us.

The scary part is when her heart rate gets really high, in the 180s, even above 200. Also she knocks the nasal cannula out of her nose and will desat down to the upper 70’s. This makes me nervous too.

Monday night there was a code. Lights were flashing and alarms going off and people were running to the room in the corner. At the time, I was talking to another parent and she said she knew the kid in that room – he had the same diagnosis as her son. Despite privacy laws, you see things and you hear things. This young man didn’t make it. We heard the mom cry out. I mention this for two reasons  – because it’s hard to be here seeing this and also scared that it could have been your child. But also because the nurse of this patient had to come back to work the next two nights and she had Hana. Hana was a challenging patient both nights she had her. This nurse is really excellent and she didn’t leave this morning until almost 9am and she had tears in her eyes telling me how hard it was to watch Hana withdraw.

I guess my two reasons for mentioning this are really – please send out some loving thoughts and prayers for the family who lost their child and please do the same for the nurse, this was the first patient she’s ever lost.

  

As I’m writing this, Hana is four hours post-extubation. That first 4-6 hours are the critical ones where you want to make sure they can handle it. Hana did beautifully. Everything was looking great. The nurse set us up so we could hold her (there is a spaghetti mess of wires and tubes). We haven’t held Hana in eleven days! 

But soon after, Hana’s withdrawal symptoms started. Hana chewed through a lot of drugs used to sedate her while intubated. Then they shut them off or reduced them for extubation and this can cause painful drug withdrawal. They gave her morphine. Then the fellow came and gave her ketamine. Then they increased her Ativan. They are also going to start risperidone. Hana has been thrashing and bucking in our arms. She’s been letting out her raspy weak cry. She disconnected her medline and her oxygen. She scratched her face. She doesn’t want her pacifier anymore. It’s hard to watch.

Hopefully this doesn’t last too long! Last time it was really painful and hard to watch. But we are greatful that the extubation has gone well. I haven’t had a chance to talk to Hana’s heart failure/transplant cardiologist about what a more dilated heart and collapsed lung means for Hana. Although he was there for rounds today, he left before they were over, I suspect that there was a patient getting a transplant today. First we just needed to see how she did without the breathing tube! Hopefully tomorrow we can get more answers!

It’s been a great, yet nerve wracking day. Thank you for the great outpouring of love and support. It has really meant so much to us!

   
   

So far extubation is going much more positively than last time! The next several hours will be the test!

   
   

They are going forward with extubation today. We (me, Paul, my mom) are very nervous about it. The medical team seems not to be nervous but very prepared. They are giving one dose of a steroid as a precaution because Hana had a restless night (and so far, day) and may have irritated her airway. They do not want any more swelling to occur once they take that tube out. It should happen around 5 or 6 this evening!