Primary Children's Medical Center 8-27-11

Sorry, I had to skip a day this time around. I took off Thursday evening and left Daddy here with Miss K and a good supply of frozen milk. I went to my parents house to have cake with Roo for his birthday then I took him home for the night and all day Friday. I don't take my laptop with me when I do this because I don't even want the temptation to be there when I'm trying to spend all the time I can with my little boy. It was a great day and night with him. He was getting very cranky being at my parents, he's decided it's time to be home, I don't blame him at all it really is time to be home. He's starting to freak out a bit when I try to leave him anywhere. Thursday evening he worried I was leaving without him, he kept a close eye on me and when I started gathering things to leave he cried and ran around trying to grab all his stuff as fast as he could to get to the door before I did. It broke my heart, I was so glad I was taking him with me so I didn't have to break his heart and leave him! He was so happy to be home with me! When we got there I asked him if he wanted to get in his bed and he said "Mommy's bed?", I didn't think he'd remember napping with me in our bed last Sunday, lol! Luckily I got him to sleep in his own bed and he slept all night just fine :o). Friday was kind of crazy with him, he was so cranky and easy to make mad! But I enjoyed my time with him and I know he enjoyed it as well. I miss him so much and can't wait to be home as a family again!

Daddy had a pretty good night and day with Miss K. I guess she had to get another new IV Thursday night :o(. She also had a few more episodes of SVT. Friday morning the Cardiology team dropped by and announced they were putting her back on the Amiodarone IV drip for another 24 hours :o(, they weren't happy with how many times she'd been in SVT for the day. Daddy was very vague on any details with me so I really don't know what the real plan is or what's going on as of right now, I'll find out sometime this morning when they come by again.

Miss K has another infiltrated IV :o(, it's her left arm this time, which means we've run out of limbs to put IV's in, she's down to just her right arm :o(. I'm hoping and praying with all my might that she doesn't need the IV's anymore now so we don't have to do a central line, every time she's infiltrated an IV they've thought about a central line but dismissed the thought because she shouldn't be on IV's much longer, if she was going to get a central line it should have been done 2 weeks ago, I'm wishing they had done that in the first place to save her poor little body :o(. Amiodarone infiltrates look horrible, and they can't feel good at all :o(.

Cardiology is very happy with Miss K's latest progress, she's only gone into SVT 3 times in about 24 hours, YAY! But those 3 times were pretty long and she had to have help to come out of it, they don't really like that. But they said they think they've gone as far as they can with the medications and that since she can be brought out of SVT with natural methods that can be done at home they are willing to consider a closer go home date! So, they want her to be kept on the Amiodarone IV drip for 24 more hours just in case it helps steady her even more then they'll take her off of it tomorrow morning! They also said that if she blows another IV or infiltrates or whatever then we should just take the Amiodarone off and forget about the 24 hours, YAY again! Sadly, within an hour of them saying this Miss K's last IV went bad, luckily it's not infiltrated and it had nothing to do with her vein, the IV line itself had a leak in it near the entry so we had to remove it, but she has to have an IV in her just in case it's needed so they will be calling the IV team in again to place a new one, but we're just happy she can have a new one and that it was the IV itself that was having trouble.

The Cardiologist that talked to me today was new to me, I haven't seen him before. He is a great Doctor as far as I can tell. He told me that they would prefer she have some type of heart monitor for her to go home with since she's still going into SVT and they're sure she will most likely still be going into it very occasionally at home. So he suggested we buy a sports Heart Rate Monitor to put on her. Daddy had previously asked about these when talking to nurses and other Doctors but he never mentioned it to Cardiology because the others told him it wouldn't work because she's an infant. Today's Cardiologist told me they've put these monitors on trial in the clinic and that they work just great so he wants us to get one for her so we can monitor when she's in SVT and make sure she comes out of it. Daddy is so excited, it's what he wanted to do from the beginning so he's now currently researching the best of the best out there and we'll be getting one, no matter the cost. This is something we think saving money on an affordable one won't be acceptable so he's been instructed by me to ignore price and look only at reviews and quality, we'll pay what we have to to keep our baby girl safe.

The pediatric team came by and they are impressed as well, though less impressed than Cardiology, they aren't as easy going about the SVT as others are. In fact one of the Doctors came and sat through an SVT episode in the night and was on edge the whole time getting ready to call for Adenosine. I got her out of it by blowing in her face, he was impressed that worked, and then he relaxed (See Physical Maneuvers). So they aren't happy with Cardiology telling me just to take her off the Amiodarone drip if she looses her IV, lol! But they are happy with everything else, they're glad to see her on her way to recovery.

I have strict instructions to get her in to the pediatrician as soon as we're home and then in about a month her pediatrician needs to send her in for an MRI to see if she was/is having seizures. None of us think she really is but we need to make sure, better safe than sorry. They're keeping her on the Keppra for at least another 2 weeks just in case then they'll talk about whether she really needs it or not.

Her infiltrated IV locations on her two feet don't look great at all. I'm not happy, her cute little feet look so horrible and painful! But they can't really do anything about it but watch and monitor them. Her little arm that joined the party looks bad too, she has a "Popeye" bulge in it and it's all red :o(. I guess they've had a ton of Amiodarone infiltrates this week but they can't really do anything to help them heal, just watch them. So here's to hoping they heal well and quickly on their own! I haven't been able to get a good picture of them yet but I will post as soon as I do.

Forgot to mention we had a little birthday party for Roo here at the hospital last night. It was nice to have my parents, little sister and 1 brother and Daddy's mom and Grandma Dot come celebrate with us :o). Roo had a blast, he got to open more presents, he got a TON of Mater stuff, lol! Don't know what we'll do with it all! He got an awesome cake made by a friend of a friend and we all loved it :o), these girls are such sweethearts for doing this for me :o). We celebrated outside on the court and had a blast for an hour or so.

8-27-11 A New Report:
Whew! What a long day! We hopped for boring as usual but got a little bit of excitement thrown in :o(.

We took Miss K off the Amiodarone drip totally today because of the non-working IV, they called the cardiology team and they told us to keep it off, they're confident she'll be fine :o). We got a new IV put in, now it's just there in case they need one for whatever reason, but she's not hooked up to any drips :o).

Around 3:00pm Miss K had her first SVT episode in 12 hours. I had a new nurse who was sort of panicky, she didn't really know exactly how to handle SVT so seeing Miss K in it made her nervous. After 25 minutes she begged me to do something so I blew in Miss K's face...about 10 times...and it didn't work so the nurse pulled out a bag of ice, she started to panic then because Miss K's heart rhythm was coming up as VTACH on the screen instead of regular SVT. She took Miss K from me and applied the ice, it worked for a split second and then she went back into SVT, we went through this about 5 times before she finally came out of it. But, 5 minutes later she went right back into it, as soon as the ice was applied she went into what looked like VTACH again, the nurse then panicked more and after frantically (and not very effectively because she was so freaked out) trying the ice about 10 times in a row (without giving poor Miss K much of a break between) she pushed the Code Blue button. I had no idea she had done this until a whole team of Doctors and nurses came running and whipped open our doors and crowded into the room turning on lights, pushing furniture out of the way, throwing tables and chairs and bringing in equipment! The next thing I knew they had applied the patches for the crash cart to Miss K's little body ready to shock her if her heart stopped! She had an oxygen mask on and was suddenly hooked up to all kinds of things. I was pushed into a corner watching about 8-10 people crowded around my baby girl making it impossible for me to see her or anything that was going on. I didn't panic much though, I knew she was fine but I couldn't understand what the nurse thought was so important to need all that. They started getting out the Adenosine and about that time a calm Doctor applied the ice one more time and Miss K came right out of SVT and fell asleep. She was totally fine. The nurse got a little bit reprimanded by the charge nurse. I felt bad for her, she was a little embarrassed for what she had caused.

The good news is when the nurse and Doctors reported the whole episode to the cardiology team and asked them if we should turn the Amiodarone drip back on the cardiologists all said she was doing as well as expected without it and to keep it off :o). So hopefully tomorrow morning the decision is still the same and we can hopefully be moved back upstairs to regular care and not ever be back in here again! I am worried about what that last episode was though, her rhythm really didn't look good at all to me, it had me a little worried. I really don't want her doing that at home at all!

Tonight I'm going to start having the nurses teach me how to check her profusion efficiently and how to feel her pulse in her ankle to make sure she's pumping blood throughout her body, if I can do this correctly then IF she does go into SVT at home then I will be able to know if she's handling it well enough to ride it out or if we need to bring her back in. It'll make me feel a lot better.

So we'll just keep praying that she's really doing as well as they say she is and that we can all be home together as a family again very soon!

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