Month: December 2016

As you can imagine New Year’s Eve in the hospital is not our idea of fun. This is the second New Year’s we will spend in the hospital and up on the floor unit, 3 West (or PCU 374 depending on how long you’ve been around). But at least we are not in the CVICU. That’s right, sometime just after 4pm we finally got transferred out of the CVICU! Our 12 hour stay turned into two days! But it wasn’t so bad, especially being in the big, quiet, private room they reserve for patients coming out of transplant surgery. I kept joking that I hoped they kicked us out of the room (and back upstairs) because someone got the call for a heart and was getting a transplant and would need the room. More on that later.

Hana really perked up today. She did not eat much but was very interested in drinking milk, maybe too interested. She threw up once, a fair amount (8 ounces). She’s still having pretty bad diarrhea but is doing a great job getting to the potty. I guess we started potty training just in time, I can imagine how much more unpleasant this would be in diapers. I’m really proud of her, she is such a tough trooper.

Hana has been VERY interested in getting out of the room. Her nurse in the CVICU was great (and happened to be the cousin-in-law of a friend of ours) and advocated to get Hana out. They allowed her to go on a couple of wagon rides on the 2nd floor. Although she didn’t look thrilled she did NOT want to go back to her room in the CVICU and she kept asking to go on more wagon rides! Now that we are on the 3rd floor we will have to see, all over again, if she can get out of the room. Since the virus is not in her respiratory system AND she’s not coughing or sneezing it seems pretty safe. Plus she is not touching anything since she doesn’t get out of the wagon. Anyway, I think it’s really important for her to get out, especially knowing how depressed she gets being stuck in a hospital room.

Other than that it’s been a pretty quiet, uneventful day. A friend dropped off a delicious meal which we really appreciated. Tomorrow night Hana gets her second dose of Cidofovir. I’m a little, tiny bit nervous about it being done up on the floor but only because I know how busy and crazy it can get up here and how the nurses can get stuck in a room for awhile and it’s important to get all the timing of her treatment right. But I’m also very happy to be out of the CVICU. It’s so much more comfortable being in a room where you can eat and sleep with Hana nearby. I hate having to leave her when in the CVICU, especially when she is sick but at some point you have to eat and sleep and go to the bathroom.

Of course, moving upstairs was the highlight of the day… almost. We got up to the floor and settled just in time to hear the most exciting news. Hana’s next door neighbor for months and months, Karla, finally got the call that they had a donor heart for her! She has waited ten months in the hospital! Ten months! And lately, Karla has not looked so great. Because of the type of heart condition she has (she basically has half a heart) she could not get a device like Hana’s Berlin Heart to help get her to transplant, so these kids often don’t make it to transplant or they go into their transplant very sick and weak. 

Karla’s family is very sweet and a huge group of her family happened to be visiting when they got the news. I got goose bumps and started crying when I heard. The staff here is very excited for her. Karla has always been very fond of Hana and it’s too bad we have to keep our distance because of our germs but we are so excited for her. I hope for families out there that choose to donate their loved one’s organs during such a painful moment in their life, they maybe get some consolation knowing how it really changes the lives of the recipients and their families. It’s hard describe but so moving witness. Of course, transplant is not a cure and still comes with life-threatening risks so please keep Karla in your positive thoughts and prayers.

Thank you once again for all your support! What a year we’ve had! I think back of everything we’ve gone through in 2016 and it’s been a lot. Then I think of everything we’ve gone through in 2015 and that was a lot too, maybe even more. I’m hoping 2017 is a year of celebration, more on that next year!

Hana’s Cidofovir treatment went very well and she tolerated it without any concerns. For her next treatment on Sunday night and Wednesday night she can just stay on the floor instead of coming back to the CVICU. That is, if we ever get out of the CVICU!  

We are still down here in the CVICU because they don’t have any rooms for her on the floor. They keep giving the rooms to other kids, I guess to get them out of the PICU which is overflowing. Here in the CVICU there are a lot of empty beds and they are supposed to start getting overflow from the PICU. We have been packed up and ready to go for about eight hours, so the day is really dragging on. I have given up hope getting out of the CVICU before tomorrow.

On the plus side, our room in the CVICU is one of the large corner rooms they use for kids right after they get their heart transplant. It’s very large, quiet and much more private. It is still not as comfortable as being up on the floor. We still have to leave to get something to eat or to find a bathroom and there is no place for parents to rest. But at least Hana has been downgraded to acute care so things are much more relaxed.

Hana has been very out of it today. She’s mostly wanted to sleep. I was a little concerned since she was much more perky yesterday but she seems to be doing a bit better. She even ate some popsicle and pickle. She still isn’t interested in doing much more than lying in bed or sitting in my or Paul’s lap for a little bit. Her breathing still looks a little labored to me but that could be from all the fluid retention.

So, we wait. This is hospital life.

It’s been a crazy day. Crazy in a way we haven’t experienced in a while. Hana woke up in a pretty good mood and I had ordered her breakfast really early so she could eat a little before her blood draw. They really wanted to see how much she would eat or drink on her own without any supplemental fluids. She was nibbling on pancake and seemed like she was doing pretty well. Then came time for blood work and it was awful.

It took over an hour to get the blood drawn and a new IV started. Hana was really screaming most of the time. Things just weren’t cooperating despite the very skilled PICC nurse’s efforts. But eventually she got a very good IV placed. The medical team rounded on Hana while all this was happening so we didn’t get to hear the plan for the day.

After the IV, I went out to take a break since Paul was planning on leaving to concentrate on work and probably spend the night at home. While I was gone the cardiologist came in to talk to him and so I missed an important conversation. Basically it was that they hear a gallop, an extra heart sound, which MAY mean bad news. Plus she wasn’t really showing too many promising signs of recovery. So this means one of three things:

1. This virus is just really tough and it’s just going to take awhile to fight.
2. The virus has spread into her heart in which case they would definitely want to treat it with the antiviral medication, Cidofovir.

3. The virus is causing her body to reject her new heart.

I just wanted to cry (and I did) when I got this news while I was out. When I got back, Hana’s primary cardiologist had stopped by to check in. He explained everything again. Most likely it was just a tough virus and she would need extra support and this was causing the gallop. Since Hana recently had a biopsy just two weeks ago that had good results it seemed unlikely that it was rejection yet a virus can trigger rejection. So they were considering sending her back to the Cath Lab to check her pressures and biopsy her heart again. At that time they could also take a sample of heart tissue to test to see if the virus had made its way there.

I guess the big debate is treating for the right thing. If you give her antiviral treatment and lower her immunosuppression drugs temporarily so her body can fight the virus then you run the risk of making rejection worse, if there is rejection. But if you treat rejection with increased immunosupression drugs then you could make the virus worse and suffer from those complications. So they decided to do another echocardiogram to check her heart function again and depending on how that looked, they would decide to send her back to the Cath Lab.

I was kind of on pins and needles but just kept reminding myself to take it one moment at a time. I was terrified of rejection, even though they can treat it. Fortunately everything was made simpler because we finally got the results of her test results the drew on Tuesday which showed high amounts of adenovirus in her blood. This made the decision to treat her with Cidofovir easy. Then she had her echocardiogram done which showed excellent heart function. At that point it seemed very clear (although not 1oo% because nothing ever is) that it was not rejection and that she just needed help fighting the virus. The called off the Cath Lab/biopsy which can have its own complications when a patient goes in who is sick.

Next they needed to get her a PICC line to do the infusion of Cidofovir. Unfortunately she had to be without food or water for six hours before getting anesthesia during the PICC placement. So we had to wait since Hana had drank water around 11:30. This made Hana miserable and she kept crying to eat and drink which made me think she must be feeling better. I requested they restart her IV fluids so she didn’t get dehydrated, especially with Cidofovir it’s important to be overdydrated because it is so hard on the kidneys.

The IV fluids made Hana feel better. In the meantime I had to pack up all the stuff in the room – it’s amazing how quickly things accumulate. They did a chest x-ray because they thought Hana was breathing a little fast. Then, I went with Hana down to the IR and stayed with her until she feel asleep. I got something to eat and then collected our wagonload of stuff from the hospital room and went down to wait on the second floor, in front of the CVICU.

An hour later they came to get me when Hana was in the CVICU. I went into her room and she was watching a movie and sucking on a pacifier. She looked pretty content. Paul arrived back at the hospital shortly after. I ordered her some food, finally and she ate two pickles and a slice of buttered toast!

The plan is for her to get pre-meds three hours before starting the Cidofovir. Then during the infusion she will also get IV fluids to overhydrate her. After the infusion she will get more meds and be watched carefully. They have to watch her kidney function and make sure she is peeing out all the extra fluid. Then they have to watch her right side heart function to make sure it can handle the fluid overload. In a newly transplanted kid it is reasonable to expect her right side of the heart to struggle a bit with the fluid overload. They always talk about the right side of the heart a lot after transplant. This monitoring is all why she needs to be in the CVICU. Hopefully by morning she can go back up to the floor.

It’s weird being back in the CVICU. There are two Berlin Heart patients there now! You can’t eat, drink or sleep there. It’s cold. It’s noisy. I’m hoping everything goes smoothly for Hana’s heart and kidneys and this virus is kicked soon. Hana will need three infusions over the next week and we will know more next Wednesday about how well it is working.

It’s kind of late here, it’s been that kind of evening. Today I thought Hana maybe looked a tiny bit better this morning. She sat up in bed and picked at her pancake but ate very little. She drank a fair amount of water but would not touch any fluids with calories or electrolytes.

Unfortunately, it was clear by late-morning that she was not really any better. She didn’t really want to look at her toys or be held. She just wanted to be in bed and watch her iPad. Morning bloodwork seems to really take a toll on her and any cheer she had is drained and doesn’t come back.

Her weight was up even more so they are testing her urine for albumin, as her blood levels of albumin are off and they think this may be an indicator for her fluid retention. She looks puffy and they may start a diuretic. Her Magnesium was again low so she got another IV dose as well as doubling her oral dose. She is back on all her anti-rejection medications.

She still has diarrhea and seems quite uncomfortable just before. She also threw up once today. She just seems pretty miserable. She did perk up again in the early evening after getting a dose of zofran. She even ate two pickles! So maybe she is turning a corner, it’s too soon to say.

The Infectious Disease doctors came by today to talk to us and examine Hana. They seem certain that she is not going to get the antiviral medication unless she either tests positive for adenovirus in her blood (her nasal swab test already came back negative, still waiting on the blood test) or she gets worse than she is now (if she spiked a fever). They also said that adenovirus is very contagious and very hard to prevent, especially because people who are not at all sick can be contagious. So there you go.

The worst part of the day was when Hana’s IV stopped working. That happened after 8pm. They tried messing with it to get it to work again but it ended up being a lost cause. The dilemma then was do we start a new IV only to have to poke her again in the morning for her blood draw or do we drop in an NG tube and see if her stomach can tolerate pedialyte until morning? I absolutely despise the idea of her getting another NG tube but I hate to have to poke her with yet another needle. Since she’s been such a hard stick lately, we decided to save her that pain, save her veins and go with the NG tube. We hated doing it but it seemed like the best option for her.

This is what made our night so late, getting in a new NG tube. Hopefully she doesn’t need it for long. Right now she is snuggled up with Paul in the big chair in her hospital room. She finally seems content.

This morning during rounds, everyone seemed in the mindset that Hana was getting the IV fluids she needed and was on her way to improving. Unfortunately, this ended up not being the case. Hana actually seemed a little worse.

In the morning, bloodwork again did not go well – it was an issue of technical skill rather than Hana being dehydrated. Three pokes later they finally had their 11mL of blood for all the labs they had ordered. This seemed to really bum out Hana for a while. When they weighed Hana she was an entire kilo heavier than the night before! I couldn’t believe but her face looked puffy and she had gotten a lot of fluid.

The big news of the day was Hana’s stool tested positive for adenovirus. This is a very common virus often associated with the common cold. It is usually found in young children. While it often causes respiratory symptoms, it can cause diarrhea and vomiting too. It is usually not a big deal – unless you are immunocompromised, like Hana, and then it can really knock you out. Apparently you can shed the virus for months without having symptoms. This is why it is important to wash your hands even when you don’t feel sick and when you haven’t been around anyone sick. The virus can live on surfaces for months. It is also can take two days to two weeks before you start to feel symptoms. It’s also possible that my cold was adenovirus and I passed it to Hana but it presented with different symptoms. But it’s also just as likely that she picked it up some other way too.

Today Hana sat up in bed for short spells but mostly she just wanted to lay in bed and watch cartoons. She ate and drank very little. She did finally pee and I think she was waiting to use the real toilet versus going in her diaper. By late afternoon everyone seemed disappointed she hadn’t perked up more. They started talking to the Infectious Disease team about more aggressive treatment. There is an antiviral drug called Cidofovir that is sometimes used in severe cases of adenovirus. It is an IV medication and it really strains the kidneys so many precautions must be taken. Tomorrow (Wednesday) we will know better if Hana qualifies as a severe case needing this drug.

Hana was very quiet all day. She requested to use the potty, water and late in the day she requested to eat. I sat her up and she nibbled some toast. I started asking she take a sip of water every 15 minutes and before I knew it she had drank 8 ounces (250mL) of water! She did not throw up. The one thing she kept saying, like a request, was “I need to go home.” That broke my heart.

It’s obvious, especially when she starts feeling a little better, that she does not want to be here. She almost seems depressed. I hope we can go home soon. They said that it’s entirely possible for her to perk up quickly and be able to go home. They do want to see her intake of food and water to be good, her electrolytes to be good and her outflow of urine to also be good. In the meantime they have stopped most of her medications. She is still getting her steroid, of course, and those medications associated with long term steroid use. But she is not getting any blood pressure medications or anti-rejection medications. Of course they have to monitor things very carefully when they do this but diarrhea and dehydration can cause anti-rejection meds to act in crazy ways. They did have to give her IV Magnesium, which they ran very, very slowly after I told them how it made her feel yesterday. They also added some potassium to her maintenance IV fluids.

I’m hoping tomorrow she perks up and we can go home, although being discharged tomorrow is very, very unlikely. With any luck we can go home on Thursday. Please send positive thoughts and prayers! 

I’m sitting in a dark room next to Hana’s hospital crib back at Stanford. It’s been all about hospitals today, the day after Christmas. In hindsight, I probably should have taken her in last night but we wanted so badly to have a Christmas not in the hospital!

It all started the night after her Cath Lab/biopsy, right after my last post, Heart On The Edge. That night I started to feel like I was getting a stuffy nose. The next morning I woke up feeling really awful. As the day went on I felt worse and was worried I was getting the flu, so Paul came home from work early. I felt terrible for three days straight. Then on Sunday I woke up and suddenly felt like I just had an annoying cold. This relates to Hana in that I may have been less observant as to when her sick symptoms started or less vigilant with her hand hygiene.

Hana did not get what I had (still have). Instead, she started off really cranky (but she’s a toddler, right?). Then her appetite slowly went away (toddler’s have picky eating spells, right?). She started having diarrhea, but not much (her Cellcept causes mild bouts of diarrhea from time to time). But after a few days it seemed like a new pattern had emerged outside all that could be normal for Hana.

So, I called Stanford on Wednesday morning to find out what they thought. I was thinking that perhaps Hana was just very sensitive to the steroid wean as we had just gone down again on her dose. But they thought the decrease in dose was so tiny it shouldn’t cause these side effects. Nevertheless, we made a couple of medication adjustments and I was instructed to call back with an update early Friday before the holiday weekend. But there was no change and after talking with one of the cardiologists she felt it was time to see Hana’s regular pediatrician.

Off to the pediatrician we go and she thought Hana had a mild GI virus and any other kid she would just send home to weather the storm. After much back and forth with Stanford we came up with a plan. Unfortunately, on Saturday, Hana vomited a couple times and I call Stanford who tell me just to wait it out as long as we feel like she’s keeping up with her fluid intake and not getting dehydrated.

Then it’s Christmas Day. A pretty subdued Hana opened a few presents and played very quietly. She stayed on the couch and mostly just seemed like a normally sick kid. She didn’t have diarrhea and she only gagged and spit up a tiny bit once. She ate a piece of toast. But by the evening it’s clear she’s pretty uncomfortable and irritable. She has only sipped a bit of water throughout the day and peed only twice. This is probably when we should have taken her in but I felt that if we could just hold off until the morning and get her blood work we would know more.

This morning, Monday, Hana woke up with a dry diaper. I took her to the lab for bloodwork and after an hour and three pokes but no blood they told us to come back the next day. Hana sucked down two small juice boxes. Back at home I called Stanford and they decided it was time for her to be seen. I packed some bags. Hana threw up all the juice she drank. We walked down to the Kaiser ER. There they assessed her and started working on getting an IV started. Eight pokes later they got an IV and a tiny bit of blood for the lab. It was no fun. The NICU nurse was the one who finally got the IV.

Hana got some IV fluid and some IV dextrose while we waited to be transferred to Stanford. She also got some IV Magnesium which made her very, very upset. Then she threw up a tiny bit and had a lot of diarrhea so they stopped it. Part of me was hoping they would somehow miraculously decide that we can just stay up on the pediatric floor at Kaiser and not have to make the trek to Stanford. But I also know this is very wishful thinking, they really like their heart failure and heart transplant patients to be at Stanford.

The ambulance ride to Stanford was uneventful. I was dreading being back there. Not because of the hospital or the people, it’s like a second home, but because I just really want this part of our lives to be over. When Hana arrived on the unit she got a warm welcome that I think really surprised the unsuspecting transport team but I think it helped Hana feel better about being back.

We got settled in and Paul arrived with more necessities (he had stopped at home to take care of loose ends and Poppy). Hana had an echocardiogram done by the cardiology fellow (this seems to be the new normal any time she has a symptom that could also be heart failure, which is pretty much every sick symptom except coughing, sneezing or sore throat). Her heart looks fine. She eventually perked up and nibbled on some toast, crackers and pickles. 

Here we are again. But different. Thank goodness. It’s been a rough couple of weeks. But it’s still nothing compared to this time last year. At the Kaiser ER people (staff) kept saying, “Wow, what a stressful day.” or “You guys are so calm and patient.” Today is nothing compared to many days we’ve endured, thankfully. I just hope it all passes quickly and uneventfully. Maybe I can even hope we can go home tomorrow! Then we might finally get to send out our Christmas cards!

Hana is such a trooper and incredibly tolerant and patient. It’s really remarkable how she handles everything.