This Heart Broken

We came home around 1:00 this afternoon.  Yesterday went well even though we weren’t at home.  Paul brought every last Christmas present to the hospital and my mom brought up breakfast so we were able to open gifts together and have some family time.  His dad and sister + family came by during the day so we got to see family and last night we were able to bring Zoe home for dinner but we decided not to have her discharged because her medication level came back very high still and we didn’t want a repeat of last week where she went home but quickly got worse again.  After Paul brought us back to the hospital he and Zoe sat eating popcorn and watched the World Series of Poker for about an hour.

Her skin infection seems to be responding to the antibiotics but unfortunately so does her gut.  She started having some pretty yucky diahrrea so they’ve changed her antibiotic.  We got to come home because she started eating, acting normal and drinking more water than she’s ever done before!  What they think happened is that when Zoe had her upper respiratory thing going and was in the hospital before her body started getting the skin infection from the residual illness.  So she went home with no fever and her med levels were fine but within about 24 hours she started feeling sick again so reduced her fluid intake….which causes her medication level to rise in her system…..which makes her feel even worse…..which makes her drink/eat less….which causes her medication levels to rise even more….a vicious cycle.  The hope is that in the future we can nip the medication level problem in the bud by accurately assessing how dehydrated she’s getting and adjusting med levels at home before they’re so high.  We’ll probably have to buy a scale to weight her diapers when she starts feeling cruddy.  Whatever keeps us at home!

Merry Christmas everyone. I’m writing this message to you from the hospital. Zoe just didn’t have a good week. Since we got home last Wednesday night she has refused to eat or drink much and her energy level steadily worsened. On Sunday morning we went and had labs drawn and then Monday morning when they were analyzed they made the call to bring her back in. She was dehydrated and had lowered kidney function due to her Prograf being at toxic levels in her system; it’s a vicious cycle because dehydration causes her Prograf level to rise which makes her feel yucky and not want to eat or drink which causes further dehydration, etc, etc. In addition she woke up Monday morning with her left eye severely swelled. As the day progressed it continued to redden leading the floor attending to decide around 11pm last night that she probably has a cellulitis (a skin infection) most likely due to her being so immunosuppressed. They started oral antibiotics last night around midnight in hopes of knocking it down before it gets bad enough to spike a fever necessitating IV antibiotics. It seems to have worked because her eye looks a million times better this morning. The hope is that maybe she can go home tonight but we’ll see.

Coming in yesterday was very sad for us and I spent a lot of time angry and sad because I wasn’t going to be at home to hear Noah wake up with the energy of 2000 volts of electricity coursing through his body; “SANTA CAME, SANTA CAME”. I also looked at the bruises and poke marks on Zoe’s arms and felt the injustice of how much she’s been messed with lately; it’s hard to see kids hurting at Christmas but being here makes it evident that our holiday doesn’t halt the progression of fallen world.

But…..we were still able to take Noah and go to a Christmas Eve service last night, Paul has strung Christmas lights in her room and there are rumors that Santa will be making a special appearance today. Plus I realized there are families he

At rounds yesterday we discussed her BNP hormone level and other reasons it could be high besides heart failure.  It also is influenced by kidney stress (of which she had when admitted Sunday) and infection.  Because they only tested the level once they can’t see if it was trending down, staying the same or getting higher.  It’s kind of fun to learn all this stuff and seeing the med student squirm while he’s quizzed on it (payback for waking up Zoe yesterday).  Anyway, Dr. Law also talked about having to pick which avenues to pursue when a heart patient is admitted with a fever; there’s so many to choose from and only so much blood you can take at once and, I quote, “especially since Mrs. Faultner will only let us take blood once”.  I’m finding he has a very dry humor.  So…he ordered an echo but said if it came back without any significant changes she could go home but we were to come back for check up and labs the day after Christmas.  He also cancelled her stress echo until the end of January because he doesn’t want her under anesthesia until she’s completely recovered.   We did the echo around 1:30 and then just waited for the results.  4:00 came and went, 4:30, Paul came up with Noah and we waited, and waited and waited.  Around 6:30 I was sure we weren’t going home because if the echo was fine Dr. Law would have just called up there and told the resident to send us home but if things weren’t good he would personally come talk to us.  I knew it was clinic day and they meet until around 6 or 7.  In the meantime Zoe’s temp went back up to 100 but dropped back to normal by 8pm.  After shift change was over (8pm) our new nurse paged Dr. Law and just after 8 he came upstairs, saw me and asked what we were still doing there.  Apparently he called up at 4pm and said to send us home.  Boy was he HOT!  I would not want to be those residents today.  We tore out of there and got home just after 9:00.  Sweet heaven….my own bed.  Zoe seems better but still refuses to eat; oh, except a bag of Doritoes and some chocolate.  This morning she refused to eat except for a piece of….you guessed it, chocolate.

Written on Wednesday, but about Tuesday…

Yesterday was a bit up and down. She woke up in better spirits and hungry so I fed her a little applesauce which made a second appearance about 15 minutes later. She also threw up a little water about an hour later so they gave her an anti-nausea drug effectively curbing her stomach troubles the rest of the day. Her fevers persisted and around 6:30pm started spiking again. She was 101.6 when she woke up from her nap but with no energy and very miserable so we gave Tylenol. She was also shaking which persisted for long enough that I had the team called to come examine her. By the time they arrived it had passed but the resident felt she was probably starting to spike high (shivering is how your body raises your temperature) and the Tylenol cut it off. This made a lot of sense because she was shivering for about 20 minutes (about the time the Tylenol would have kicked in). She perked up with the Tylenol and actually wouldn’t go to sleep; she wanted to play. Around 10:00 we had IV team come and examine her IV since she seemed in pain when they tried to flush it. Sure enough, it was hurting her so they pulled it out. It was pretty funny watching her examine her own hand this morning and marvel at the fact that the IV was gone.

We had an uneventful night but the good news is that her fever broke overnight without Tylenol and her heart rate came down significantly. I’ve been really stressed about her heart rate being so high and discussed that with her cardiologist last night. He also graciously postponed a very nasty procedure to test for additional viruses to see if her fever went away by this morning. They did more labs this morning and we’re waiting for results on her CMV score which was taken yesterday. Right now I’m not sure what today will hold. Although her fever is gone and her heart rate is lower it’s not back to normal. She’s nursing and drinking water but is refusing food altogether. Plus I just found out her BNP score (hormone that shows how stressed her heart is) is at 490; her September labs had it at 62. Ouch. I don’t know what that means but rounds aren’t for another hour. I’ll find out then what the plan is.

Today was a rough day but ended well. Zoe’s fever continued and worsened during the day. She slept most of the day but when awake cried and moaned. Tylenol wasn’t controlling her fever well but around 7ish she woked up and her dad and brother were there to cheer her up. Noah got a couple laughs out of her and she seemed to perk up. After they left she actually ate some food and played with me a little. Although she still was puffy in the face and exhausted looking it was 150% better than earlier in the day.

All of the tests came back negative. She didn’t have any of the really nasty viruses they tested for, no evidence of infection in her blood or urine. Her immunosuppressant level did come back extremely high. What they don’t know is if that is due to her dehydration or if it was high before she got sick and intensified by the dehydration. Her bicarb level in her blood was extremely low which is what they think is making her or intensifying her lethargy. This is usually caused by severe diahrrea or high levels of CO2 in the lungs from being unable to breathe. Neither of these things is happening in her body so they don’t know why the bicarb dropped. They are giving her bicarb through her IV. She is also getting all her fluids via IV because she has been refusing to drink. So the plan is to run another battery of tests again tomorrow including another chest x-ray. My hope is that tonight was her showing us she’s getting better. If she is eating/drinking in the morning I can probably convince them to back off on a couple of the tests.

I don’t expect to be out of here before late Wednesday even if she wakes up chipper and hungry in the morning. She has to prove she can keep herself hydrated so her kidneys are not stressed out again. A decision also has to be made about her stress echo that is sheduled for Friday. It will either continue as planned, be bumped up sooner so she can do it before leaving the hospital or be rescheduled for January. If it is rescheduled she has to have a clinic appointment before leaving (echo, EKG, consult). Plus, rounds take place between 11 and 12:30 where she’s at and NOTHING gets done before the decisions are made at rounds. And then it takes a couple hours to schedule what has been decided so…..think snail’s pace.

Sunday afternoon Paul and I brought Zoe up to the ER because she woke up from her nap with a fever over 102, a rash and lots of moaning/lethargy. I kind of expected that her two week long cold had taken a bad turn into viral pneumonia but her chest x-rays looked clear.

So…we’ll be here at least overnight. They have put in an IV and pumped some fluids in (she surprisingly got dehydrated sitting in the ER) and taken lots of blood for tests as well as a catheter culture to test for a urinary tract infection. They first round of labs came back with high white blood cells, electrolytes out of wack and a couple other fun stuff. The resident says the results look more like an infection than a virus. Don’t you worry cause they did an incredibly invasive procedure to test for a virus just in case. She also said they were concerned that it may be her med level is way off and causing these problems. We’ll get the results back on everything tomorrow as well as a new round of labs to check her med levels.

We’ll check in again tomorrow. The little trooper is sleeping in her room for now.