We've had a wild ride since our last update! Wednesday she had a difficult day as far as feeding goes, not taking her bottle well and such. By evening she was breathing faster than I liked, but not really fast. By Thursday morning she was breathing at over 100 breaths per minute (most babies are around 45 bpm, but Esther's usually around 70 and anything over 85 is concerning for Esther). So after talking with a cardiologist from Children's, I tried to get her into her Dr or any Dr who has seen her recently, but that wasn't possible. I did find out that one Dr that had seen her twice since she came home was on call at the hospital so I decided to take her to ER.
We got first class ervice in ER - especially once I said that Esther was showing signs of possible heart failure and that she had a history of heart failuer - we were immediately shown into a trauma room and people came out everwhere. She was quickly evaulated and an IV was placed in her head (ouch!) as they couldn't find a decent vein anywhere else. Then Dr Rosequist came in and spent some time with us and she really felt that she needed to be watched for the next 24 hours. So she was admitted. I was still doubting my decision to take her to ER, but not for long...we soon discovered that she had gained over 7 ounces in just 36 hours - that was definitely not a good sign) and she definitely was having problems by the next morning and they ended up changing all her meds, adding anew one and moving the lasix to IV - she really perked up after that! Things went very smoothly after that, and by Saturday afternoon Dr Rosequist felt she was ready to go home. So home we went (I almost got to blog that afternoon, but decided that digging through my 250+ emails was more important). I did get caught up just before we officially got word that she was discharged and then I was packing in earnest. Then it was rush/rush as we tried to get her new meds from the pharmacy before they closed. We got them just minutes before they closed for the weekend!
She did fine all evening and through most of the night, but at 6 am she was breathing really fast again and really struggling with congestion and just plain working really hard. We called the pediatric floor and Dr Rosequist was there and after discussing things with her, we all felt it was time to take her to Childrens. So while I packed, Daryl brough the two little boys (at the last minute I asked Daryl to stay home and that meant two kids had to stay home due to how many kids fit in the stationwagon) to Sally's house. Then we were on our way to Seattle. We decided to drive her because she wasn't critical enough to require an ambulance transport, and we'd get her there faster (we'd have to take her to ER and then wait for a Children's ambulance to get up here).
We got there in good time (entire trip was just over 2 hours) and she did really well. Once here she was doing better (empty stomach made breathing easier). They tried putting an IV in each hand but were unable so they called in a nurse that's good with IVs and she got one in Esther's hand. She got a dose of IV lasix and was breathing easy and resting soundly asleep in my arms in less than a half an hour! They decided that she should be admited and are thinking she's fighting some virus and drew blood from the IV to see if it's one of the 5 dangerous visues or just a normal cold. Daryl had to leave around 5 pm (he has to work tomorrow and gets up at 5 am and didn't want to drive house really sleepy - he'd woken up at 5 am this morning for no reason). Just after he left, Esther woke up and in her moving she knocked the sturofoam "cast" ascrew on her arm and messed up the IV. They had to remove it. They decided to not mess with it until she was in her new room. Finally at 7 pm we got to go to her room.
They are going to stop giving her one of her meds - the sodium - hopeing that she'll do well without it and that the lasix will work better if she's not getting it - but they want to wathc her closely for 48 hours so we'll be here at least until Tuesday.
Because she's suspected to have a virus she has a room to herself and we are in "isolation" until her tests come back. This means the nurses have to be in full garb whenever they are in the room - masks and gowns. I don't have to do this, so that's good as I have a reaction whenever I try to wear a mask!
Once in her room, the IV team came and I requested that they put the IV in her head - it's much easier and I didn't want to see her get poked unnecessarily again. The IV nurse was great! She got it in quickly and did a nice job of securing it - she had to give Esther a little trim of some under hair right in front s oit would be secure, but it will be hidden under her "mohawk" - it looked like a little pony tail and I said we should put a bow on it - so she grabbed the pink "stick to itself" tape, but it in half and tied half of it around her whalespout and the other half onto the IV! It was so cute! The nurse said she looked like Cindy Lou Who! She really did! See for yourself:
She's been having problem with low O2 levels since she fell asleep - they are trying to figure out what's going on, but I tried a new position and she's doing much better now. If she stays good for a little longer I'll feel like I can go to bed. I'm not tired at all now (almost fell asleep sitting up in the ER, but for some reason I'm wide awake and not even sleepy and it's almost midnight now!).
Here's a photo of her "new doo'
She's pink from head to toe!! And she's waving "hi" to you!
She's been trying to put her hand in her mouth yesterday and today - this is a great thing for her to do!
And lastly, I want to leave you with the first photo of her smile - they are so quick they're hard to get on film!
Tomorrow I'll be talking with her cardiologist and hopefully we'l have a good idea of what Esther's got going and I want to ask her how this might effect plans for her. From my perspective this is definitely not going in the "improvement" direction.
Please pray that she'll do well overnight (she's still oxygenating well in her new positon) and that her Drs will make good decision in their care of Esther - and especially that she won't get any "bugs" while she's here. I think she may have gotten this "bug" while she was at Childrens this week - either that or this is something that goes farther back than that and it just took a while to really take hold.
Good night!
Ruth, for some reason I thought of you this morning and decided to check the blog to see how things were going. My thoughts and prayers are with you and baby Esther and the whole gang. You are such a trooper. I pray the Lord will give you strength, energy and good health during this time of separation from the rest of your family. Take care. Heidi
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