Author: katmeander

I thought Hana was breathing kind of fast (more than 50 respiration a per minute) while sleeping. When I checked again it was still over 50, several hours later. They told us to go to the Kaiser emergency room. There, they did bloodwork, tried to get an IV, took a chest x-Ray. They transferred us by ambulance to Stanford. Here they decided to move her to the CVICU. We are waiting for a bed and I’ve been up 24 hours almost. They tried to get an IV here too and couldn’t. I’m too tired to type any more.

It appears that the honeymoon of eating and drinking is over for now. At least Hana seems to be settling into a new habit of exploring new foods and textures. She is not quite as enthusiastic about food as she was last week, but it is much, much better than she has been over the last several months. As for drinking, we have not achieved a 400mL + days since Sunday, the day my mom left. Today was as little as 160 mL, but yesterday it was 300 mL. Overall, it is down way too much to even think about doing a wean from her NG tube. Not to mention the fact that her weight is still down.

Thursday we saw the GI doctor and dietitian. Hana was weighed and is still down six to eight ounces from before she got the stomach virus, depending on which scale you go by. We need to get her back on a weight gaining trajectory, even if it is a slow gain. We are going to investigate increasing her total volume of fluid that she gets each day. I was disappointed about this temporary backward slide and was kind of depressed about it for a day but now I’m over it. I have to be, it takes way too much energy to be depressed and disappointed. I really was hoping that now would be the time to get Hana off her tube and eating and drinking on her own. Hana has other plans. Her own personality and spirit is revealed more and more each day, it is such a joy and privilege to witness.

I really believe that she will eat and drink when she is ready. We have had the most success when we spend time out and about. The more time at home, the less she seems to drink or eat. This is not always true, sometimes she will spend an hour in the high chair working on eating a piece of cheese and she will be content to do that three times a day. But Hana really seems to thrive when we get out. So, even though I’m more of a homebody, we need to pack up and get out of the house. We also have had a lot of success with Hana watching other people eat, so we are going to try to eat out more or at least be around others when eating is happening. I’m not wild about the idea of eating out so much or spending so much time going from one activity to another but that seems to be what is called for right now. So, I will pack her snacks and milk and feeds and feeding pump and the diaper bag and we will go out and have as much fun as possible!

This evening we had to do more blood work. They had to stick her three times and move the needle around to get all the blood they needed. It was really challenging to witness (five minutes after that she had to get her flu shot booster too). But Hana really bounces back so quickly, it is really amazing! She inspires me not to dwell on negative experiences. So far, her results have already started to come in – her creatinine is back to her usual baseline (on the high side), her BUN is below her baseline (still much higher than the range for otherwise normal children) these results are related to hydration. Her BNP is at 1100 which is down from the all-time high of 1436 which was the result last time, a few weeks ago. This is kind of a measure of heart failure although results in children are not a very reliable source (normal is below 100).

When Hana was in the hospital last week, they had her on fluids to help keep her hydrated without throwing up. Then they transitioned to breast milk and finally they started adding formula to the breast milk so that they were back to her normal calorie count for the day. Now when they did this (and they advised me to restart her pediatric formula mixed in at home the next day!), I was still feeling sick from the stomach flu and hardly eating, so I couldn’t imagine that Hana was feeling ready to handle her normal calorie count for the day either. Hana started vomiting more too so it seemed like we were going backwards instead of forward.

When we got home from the hospital, I stopped giving her formula and went back to straight breast milk. She still vomited some, but it was less and she seemed less miserable. A few days later, when things seemed to be going better, I started adding a little infant formula back in. We still offered Hana straight breast milk by mouth, as much as she wanted to drink and all her tube feeds had some formula added. But Hana was suddenly thirsty. She had been thirsty in the hospital from being dehydrated, but now she was continuing to drink and drink more than her normal amount. Then she started wanting to taste the foods that we were eating.

Its as if the stomach virus and the cut in calories has awakened her appetite! Yesterday, she drank 510 mL of breast milk. The best she has ever done before that was 380 mL. Today she drank 490 mL! Her cardiologist at Stanford says that when she starts regularly drinking 400 mL a day then we can talk about weaning her off her NG tube! In addition to all the breast milk she’s been drinking she’s been gnawing on Cheddar Bunnies, strawberries, cheese, meatballs, noodles, cheese puffs, pizza, yogurt and croutons. She is tasting other things as well. I just can’t believe it! It has helped having extra people around to make it a fun game of tasting and eating (I guess I’m not fun enough). Maybe the greatest thing of all is that Hana seems to be enjoying it!

Perhaps another factor in this new eating success is that Hana has just gotten her first molar. Getting these teeth looks painful and Hana has certainly been acting like they are painful. Despite giving her Tylenol she has had a hard time getting to sleep for bedtime or her nap. But now she has one that has come completely through (and at least another one working its way out). I suspect that now Hana is very overtired because she won’t nap and its taking almost two extra hours to get her to bed at night. Yesterday she napped for only ten minutes all day long. Today she only napped for a little over an hour and that’s been pretty typical this week (and this is not typical of her, more like at least two hours.)

I hope this is the beginning of our breakthrough! We just need her to eat more volume. In the meantime we need to keep an eye on her weight. Eventually she will need to take her medications by mouth too.

Lastly, in the good news department, Hana saw her pediatric ophthalmologist who said her astigmatism is so in consequential now that we no longer have to make her wear they eye patch! This is a huge deal because finding time to sit there for an hour, holding Hana’s hands down to make sure she didn’t pull the eye patch off, was very difficult.

All of a sudden, we are being discharged! Paul is not even here yet with the car seat, so we are just hanging out in the room, luckily they do not need the room.
Last night was actually a bit restless. Hana vomited twice and I requested they put her back on half Pedialyte and breastmilk. I was feeling awful too so I imagined she was not feeling well either. They did make the switch but then the pediatric cardiology fellow that was on that night said to switch it back and give her one more hour to see if she vomited again. He wanted to see if she could push through so we could go home today. He’s the same doctor who was on call when all of this started on Sunday night. She didn’t vomit again but she did sit up in bed several times and coughed and heaved like she was going to.
I didn’t get much sleep but I’m glad to be going home.
Here are two remarkable things – Hana’s regular heart failure/transplant cardiologist said it was remarkable that she had gone eight months without having to be hospitalized, most kids are back for one thing or another. The other cardiologist on the heart failure team who attended to Hana while here said her heart did remarkably well in dealing with the gastroenteritis and subsequent dehydration. I am so thankful and feel incredibly lucky. Thank you to everyone’s continued support!
Hana is ready to go home. She is bored and ready to be set free from this room!

Everyone is feeling better today. Hana’s glucose levels are back up but her creatinine and BUN are still high. Last night IV fluids helped a lot. Today they ran some Pedialyte through her feeding tube, which she tolerated just fine. Then they mixed 50/50 Pedialyte/Breastmilk which she also seems to be tolerating. They are holding all her heart medications.
Hana is cranky because I think she is still not feeling well, her stomach is gurgling. She also is bored but is feeling well enough to try to climb out of her bed!
Tonight they are going to try her on straight breastmilk then her usual breastmilk/formula mix she’s been getting.
I definitely turned a corner and although I can only tolerate small amounts of food I’m back to normal. Paul is the same as me. My mom, on the other hand, is now sick!
I’ve heard different predictions as to how much longer we will be here – anywhere from tomorrow to Saturday. Either way, at least we don’t have to share a room with three other patients like last time we were on 3 West.

Hana was admitted to the hospital at Stanford. They want to be able to give her IV fluids and watch her. She’s been dehydrated and lethargic. We have a private room due to her virus. Paul and I both feel sick. I’m having a hard time sitting up, which makes it difficult to be by Hana’s bedside. I hate it! It already is awful to be this sick, but it’s worse when your child is in the hospital. Thankfully, we’ve got family here to fill in.

Hana has been sick, likely a stomach virus with vomiting and diarrhea. It started Sunday when she started vomiting. Coincidentally, my parents and one of my sister’s arrived that same day for a visit. Paul is getting over a stomach virus and now I also have it, so thank goodness we have the extra help.
The folks at Stanford are worried about Hana being dehydrated and keeping her Meds down, so that’s why they want to see her. They also told me to pack an overnight bag in case she is admitted. I hope they let me stay with her since I’m so sick myself!

So, after a crazy sort of day – bloodwork in the morning and then waiting for a copy of Hana’s latest echocardiagram and it almost seems like everyone at Kaiser knows her. I saw her bloodwork results before we left and my heart dropped. Her BUN is high – 36. Her BNP has tripled – over 1400 (it is a test for heart failure). Her potassium was high. After seeing her bloodwork results I packed as if we were going to be away for more than a few hours. The trunk of our car was full of bags.

We drove to Palo Alto and the nurse practitioner who manages everything saw us as we were being led from having her vitals taken to our room. She said, “She looks angry!” to which I replied, “She is angry!” Hana really hates getting measured – length, weight, temperature, blood pressure, O2, she hates it all and she lets you know! But I think angry is an okay response, because perhaps if it were really bad she wouldn’t necessarily be “angry”.

The nurse practitioner came in the room ten minutes later and said she was relieved to see her. She examined her, as did a medical student, well he just listened to her heart while I quietly sang songs. They heard a gallup. But then Hana wanted to be up and walking around (still holding on to things, not quite on her own all the time yet). They took the copy of the echo and left the room.

When her cardiologist came in and looked at her he said he was relieved too. It is amazing to me, with all the instruments and tests they can do, but really what they rely on most is just seeing her. The want to see how she acts and behaves. She looks normal. He listened to her. They felt her liver. We talked about her cold last week and her constipation from the new pediatric formula (Hana helped out by letting go of some smelly farts) and he said that those two things could cause the belly breathing they saw in the videos. Or, it could still be a very early sign that her heart is worsening.

So, the plan is we are increasing her Lasix to three times a day until Thursday. We are not giving her Aldactone (because of her potassium levels being too high) until Thursday. She will see the Kaiser cardiologist on Thursday and we will repeat her bloodwork. I will continue to monitor her breathing. If it continues to stay rapid periodically (it was normal in clinic) or worsens or if her bloodwork results do not improve, then she may have to come to the hospital and get IV medications for a few days.

We are relieved too!

Sometime last week I thought Hana was doing some strange belly breathing while she was sleeping. She also had a mild cold and was a little congested so I thought perhaps it was due to that. But the cold went away and the belly breathing did not. I thought maybe it was just due to deep relaxed sleep, but then, over the last couple of nights, she has been more restless, mostly during her two night feeds. She’s been throwing up too, although not more than once a day and I thought it was still her just getting used to the new pediatric formula. Yesterday she threw up twice.

Today, while she was napping I took a video of her breathing. It just wasn’t sitting well with me. I called our Stanford Nurse Practitioner and left a voice message. I finally called again several hours later and finally talked to her. I sent her the video of her breathing during her nap. She wanted me to bring Hana in the next day (Tuesday) and we made an appointment. She told me to give her a dose of Lasix and then another one in the middle of the night.

A couple hours later, Hana was getting a tube feed and I felt like her breathing was really fast and she felt sweaty. So I called the nurse practitioner again even though it was 7:30 at night. She actually answered! She asked me to take another video of her breathing and send it to her. I sent her another video and half an hour later she called me back. She said she sent it to Hana’s cardiologist who looked at it and agreed that it looked fast for a baby her age but he felt like she didn’t need to come in any sooner than tomorrow. Of course, if something changes then we need to bring her in sooner.

So it sounds like maybe she needs to get more Lasix to offload her heart, which maybe can be accomplished adequately with oral medication but if not, she may need to be admitted to the hospital for IV Lasix. Or, all of this could be symptoms that her heart is worsening.

Today I cried after taking the first video. I feel like I generally stay positive, but sometimes it really gets to me, usually about once a week. Then you just have to let it out or it will eat away at you. Sometimes I have ugly thoughts, jealous thoughts, bitter thoughts – especially when I hear my wonderful, amazing mom friends (please don’t take this the wrong way) complain about something going on with their baby and I think, “You have no idea…” I have those thoughts because, at that moment, I feel inferior and scared and jaded and sad. But mostly, most moments, I feel lucky and honored – to have Hana who brings us so much joy. And really, somewhere out there a mom whose baby is really, really sick might hear ME complain and think to herself, “You have no idea…”

All over, at this moment, there are moms and dads next to their children who are suffering. For them and for their children, I wish them peace and comfort. For myself and Paul I wish for us to have peace and comfort. For my sweet baby Hana, I wish for her to have peace and comfort and so much more. For all the moms and dads out there who have something to complain about, I wish them peace and comfort too!

Oh and on a bright note, Hana didn’t want to go to sleep tonight because she wanted to keep practicing her walking!