Saturday, December 27, 2008

BIG more unknowns

Charli had her 6 mo immunizations yesterday. She had been cranky all day (as she has been the last week or so..we think she is teething). She woke twice last night (unsure of time) crying out..she has done this occasionally in the past..I gave her the bink and she feel back to sleep. She woke a third time and my husband was just coming to bed (around 4a or so) and I went to give her the bink and could feel the heat coming off of her. I flipped the light on and she was pinker than pink, her whole face. I took her temp, 101.3 rectal. She has never gone above 99.5 for anything, not with her ear infection or shots. I called the ped and while waiting for him to call back I started noticing a pattern she was making with her right arm (her affected stroke side..something she never does). She would bring it off the bed in like a half arc to straight up in front of her then put it down again. I looked at her face and her eyes were open, she was moving her head back and forth (not fast, but like she does almost when she sleeps and is restless) and she was smacking her lips and kind of licking them with her tongue. she was also kind of straightening her legs out at the same time together..tensing them. That was when I started to panic. The ped called, I told him all of this and he said to try and record it with a camera if I could so they could see if it was definitely a seizure. My DH couldn't find the camera *he had taken his Lunesta already and was OUT OF IT!* and while still on the phone with the ped she stopped doing it, at the same time my DH was talking to her and she started opening her mouth and moving her left arm at him (she looks at us and opens her mouth wide a little bird all the time. Not sure why she does it, I guess it's a happy thing). Ped said he thinks it's a partial seizure given the fact she "came to" or oriented again so quickly, and didn't really lose consciousness. I have no idea what a partial seizure is, or really what to expect with febrile seizures (FTM here) he said it didn't sound like a febrile seizure to him, and based on her stroke history she is at risk to have seizures with fever I guess (no one ever told us that before...but It's something I've always worried about for some reason. I'm OCD about her temp and never knew why really) We were told in the NICU and at follow up with the ped neuro she didn't have seizures and they didn't think she would have any. Now I'm freaking out (although surprisingly calm given how anxious I usually am) He wants me to call neuro and get a repeat MRI and EEG (both of which haven't been done since NICU) and if her temp goes over 102 or she seems to have another "episode" call 911 or go to ER depending on how stable she is. I think my calm is I need to be calm and keep my wits about me in case something else happens. One thing I've always been is calm in a crisis. My mom is on her way down to watch her so I can get some sleep later. I'm sure I'll lose it then. I've always been so scared of her having a febrile seizure, and now the ped says she may need seizure meds etc. I guess the point to my rant is has anyone dealt with this "partial seizure" before, and what really happens during a seizure? For working in health care as long as I have I've never seen anyone actually have a seizure. I know what they tell you to look for, but should I be noticing or looking for anything else that they don't normally tell you about?

Thursday, December 18, 2008

Somewhat of a mess, part 2.

It's been too long since I've been able to blog. Blogging is cathartic for me. I need time to do it more often. I'm not sure what my deal is today. Nothing in particular has me upset today, just random general things. The baby has been teething (or we think is teething) this week. I brought her in to the ped Monday because she was cranky over the weekend, and pulling on her ear again Sunday. I thought maybe her ear infection was back. (the cranky could be we were staying at my in laws so her usual routines were interrupted a bit due to the massive ice storm we had. I know I was cranky) He said she had fluid in her ear but they were not infected at this point. He looked at her teeth and said he thinks the two are coming in, they aren't through yet, but are making their way. Needless to say we had one night of blood curdling screams, and on and off crankiness and general not happy monkey this week. She hasn't wanted to play, she wanted NO PART of PT today (which is another aggravation I had..not on her part, on my therapist..I'll get to that). I feel horrible that I can't help her with her pain. And I'm stressing because I can't seem to find anything for her teething that she can really hold on to. Everything is too bulky, or too big, or would require two hands to hold. So she just mostly chews on her fist. I think I'm stressed because I know the difficulty she is having trying to chew on things with just her one hand, and I don't know what to do about it. I try and hold the things for her, or encourage her right hand by placing it on the object, but most of the time she gets mad at me. I hope they come in soon. I hate seeing her in pain. Top that off with she has been constipated (not that you needed to know that lol) so she is in double pain. Poor thing.

So, PT today. Or lack there of. The therapist calls at 1:56p to say she is running late, has to see one more person, and will be there around 2:45 (our session is at 2) I was rather annoyed that she waited until 4 minutes before our session to call. But whatever. She said "I hope it will be ok" I said "we'll see, the baby was up late last night and hasn't napped today, so she is pretty tired and not too happy" She goes, well maybe she'll sleep now and be awake when I get there. I was like " she doesn't seem like she wants to go down at this moment". So, Jaime gets here, the baby is already on her way to angry, and Jaime starts playing with the baby and trying to do some stuff with her and Charli freaks out. She went into a full meltdown, complete with sobs and those cries where the mouth is open, but nothing comes out. Much like I had the other night when her teeth (I'm assuming teeth) were bothering her. So she puts her down on the ground and takes her socks off to continue to do therapy. My child is practically choking at this point she is crying so hard (in the meantime I kept holding my hands out for her to give her to me) so I snatch her up and I'm like "ok, thats it" It took me a bit to get her to settle down, and after she did she fell asleep in a matter of minutes. She was out cold poor thing. Of course she only napped for 40 minutes, I'm thinking she would go down for a few hours. I don't know, our last session I was kind of aggravated as well because I thought she was unusually rough with the way she was handling her, but I treat her like she is porcelain most of the time, so I figured I'm just being PMS'y and overly critical. So Jaime says her right arm seemed tight again today, and was saying that when she moves the baby side to side or front to back, the baby should be moving her head the opposite direction and she isn't doing that. So of course I got all freaked out and am nervous now. We've always had good reports from our therapy sessions, and now I'm anxious again. But, the other day the baby sat unassisted (except for her baby boppy) for I'm not sure how long (not long mind you, but it was a big accomplishment anyway!) . We tried again today but didn't get too far because she got mad.
The other thing is she needs to get out of her bouncer. I want to get her an excersaucer or jumperoo ( I haven't figured out what would be better for her yet) so she can get out of the bouncy seat. She will only tolerate floor time for so long, and even less time in the bumbo. Jaime wants me to turn her in the seat to encourage her looking to the right more, but then I'm on her other side so she is looking more to the left to see me. It seems like no matter what way I turn her bouncy there are more cons than pros. The way she is now she can see whats going on, the tree, the cats and dog, me, Larry, the TV (very important for when Pinky Dinky Doo or hockey is on lol). So I'm concerned about her not looking to the right as much again now. She was doing pretty well with that for a while. I think getting an exersaucer (or something similar) will encourage more midline and hopefully equal time looking to the sides.
I am just overthinking and stressing everything today. Top that off with I've been following a heartbreaking story from the BBC boards and I'm just sort of an emotional mess. I've been praying for Kayleigh, and asking everying to do the same. This little girl has been through so much, and is such a little fighter. I hope they get a Christmas miracle.

It makes me realize just how lucky I am to be home with my angel.. she's here with me, and I love her more than anything in this world.

Tuesday, December 2, 2008

Nothing short of a mess right now

I thought I was scared enough in the NICU, or at our follow up appointments. Today's events may have topped that. I was putting Charli's ear drops in her ears this afternoon, first the left side, then the right (well..trying to anyway, because I can't seem to get them in her ears..even when she is cooperating) and she was falling alseep on her right side (it was nap time). She usually sleeps on her side (alternating) at naps, because of her plagiocephaly. I was about to leave the room when I noticed the chewy (bink) had fallen out of her mouth (more like she spit it out). I went to give it back to her when I saw her right arm was completely blue. Bluer than blue. I picked her up and frantically rushed around trying to find the phone to call 911 (the only thought in my head) and noticed the color coming back, so we rocked a bit and I massaged it and let her relax for a few minutes. After calling my mom I decided it was best to call the ped and let them know. What they told me when I called nearly made me lose it. Ok, I really did lose it. I called and explained the situation, and that I was concerned because it was her affected side after the stroke, to which the nurse promptly replied "she needs to come in so we can check and make sure there is no damage, her circulation is good, and that she doesn't have a clot and have another stroke." WHAT!!!!!!! I literally almost passed out. Probably a good time for me to start the blood pressure meds that I've been putting off at this point. I never even CONSIDERED for a minute she could have another stroke because of this. So now I'm frantically and hysterically calling my mother in law at work to come get us ( the brakes in our other car gave out yesterday so I can't drive it), and trying to have someone find Larry at work to tell him..but he's in a meeting. We get to the dr (our ped was off today) and see the PA whom we've never seen before...she comes in and does her exam and says she seems great, she has a strong pulse in that arm...was moving (to the best of her ability) but she would speak with the other 2 dr's on and see if they wanted to do tests. I'm thinking..yes, please..tests. I can't wonder and worry about this now! She comes in and says no tests. I'm thinking ..that's it? You put the fear of God in me and now you are sending us home with a feel better, she's so cute? So I call the neurologists office from the parking lot...thinking I'll speak with his nurse and tell her what happened and see what she thinks..and he gets on the phone. Which I guess was a good thing. I'm not entirely fond of him, but what he said made sense (he basically in different "neurologist" lingo backed up what the ped said, it was probably positional, she isn't at risk (as far as they know) for clots, "normal" children have issues like that where they lay on a limb and forget to move or don't move and lose circulation yadda yadda yadda. He said that he believes the pulmonary hemorrhage is what caused the stroke (this is the first time he's ever indicated what a possible cause was).So for once I'm grateful for speaking with him. But I'm still not at ease. I can't get that thought out of my head..and it's scaring me. I'm trying so hard to push it out of my mind..but it isn't working. It also brings me back to my intitial "why aren't we seeing a pulmonologist for follow up?" which I am going to call tomorrow and find one and make an appointment. I'll deal with the regular ped later regarding it. So my little monkey is fast asleep...and I'm a mess. I hope she feels better tomorrow. She seemed better this morning, but acted like she hasn't felt well all day again, especially tonight. Of course two trips to the dr in two days probably didn't help. Sigh. Ok, I think I'm going to go find some cookies, and call it a night. It certainly has been a long day.

Monday, December 1, 2008

Our first sick trip to the ped ;o(

I can't believe my baby is 5 months old today!!!
So the past few days Charli has been very fussy and irritable. (which is so NOT her, she generally is the happiest baby ever!) so I knew something was up. Then today I noticed her pulling on her left ear. So I moved our ped appointment from Friday to today. He looked in her left ear, and said "'s fine" looked in the right and went "oh my..that is infected!" I felt so bad. And the poor thing had to tug on her left ear because she can't get to her right ear. My poor baby. She is so uncomfortable. So we started Amoxicillin and ear drops tonight. Hopefully she will feel better soon. I hate knowing she is sick and in pain. It's killing me. She's been such a snuggle bug today tho. That was nice! She now weighs 16 lbs 10 oz (2 pounds since last months appointment) and her head grew what he said was a centimeter and a half. I have to go and look at her records because I think last time the nurse measured incorrectly and Dr. B checked it and got a slightly smaller number..which would mean she went up 2 and half cm's I think. I can't remember tho..I really need to find that piece of paper.
Speaking of paper. I have almost everything I need to send her records to CHOP. I spoke with them today and if I can get to St. Petes to get her NICU discharge summary I can send everything this week. That is my goal! I still need to do a check list and make sure I have everything ready to go.
On a different note...the monkey was really using her right hand alot today. ( at least she was when I was holding her. She tries SO hard to get her right hand in her mouth when she has a toy in the left. She really wants to get them together.) PT last week was basically watching her to see what she can do and what she needs to work on, and teaching me some ways to stretch her muscles out, and help loosen them up a bit. Apparently it's worked because I swear since Wednesday she has been moving the right hand to her mouth more. (It could be I'm seeing what I want to see...but I'm going with she is a quick study) I can't wait for our PT this week. I just hope she feels better by then because otherwise she isn't going to want to play so much. Our therapist is very nice. I was a bit nervous about how Charli would respond to her, but she walked over to her and smiled at her, and Charli gave her a big smile back. I guess she likes her too! Ok, I guess I'm going to watch my DVR'd General Hospital and go to bed. Everyone else is already I'm listening to easy listening with the xmas lights on and enjoying the quiet. I'll write are some pics from today