Another good day with the whole family under one roof. Riley is still on a continuous feed, but she likes to sit at the table with the rest of us while we all eat dinner (yummy taco's tonight). Zoey loves to play the letter game at dinner, where someone gets to pick a letter and we all take turns going around the table naming things that start with that letter. Zoey can be so amazing when she wants to be versus the Beast that she has been so frequently lately. Getting ready for work & school on Monday (a day on which I overslept and opted not to dry my hair out straight), Zoey proceeded to tell me that I looked like a ragamuffin and perhaps I should brush my hair instead of hers. Luckily later that night she told me that even though I looked like a ragamuffin I was still pretty. Nothing beats having your 4 year old tell you that you are pretty.
Riley had another good day at home. She was cooing and smiley and overall just happy to be home and out of that stinkin' hospital. I love being able to pick my baby up and hug on her and not have her connected to 40 wires which she loves to pull off. No IV in her arm, no alarms beeping constantly through out the day, no O2 sensor on her foot ... it was just lovely. Pure and simple. We're getting back on a routine and perhaps one day in the not so distant future I will be motivated to live in a clean house, versus the nasty pigsty that I currently call home. Good thing we don't have too many visitors lately because I would be too embarrassed to invite them in!
Wednesday, April 20, 2011
4-20-11
So Riley came home yesterday and she is loving her life with Nana and her big sister. She had lots and lots of smiles and giggles for everyone yesterday. Hopefully she is getting healthier and the beta blocker is going to do its job.
Monday, April 18, 2011
4-18-11 9pm
So Riley got her 2nd beta blocker shot at 6pm and since has drifted in to a good sleep and her heart rate is in the 120-130s.....have to love medicine that works!!!
4-18-11
So Riley is still in the hospital. We have been off the O2 for about 36 hours and been fine, but the concern is still her reflux and something that we were following before she got her viral infection - a very elevated heart rate. The concern is that the heart would literally wear out over the coming year as her rate is around 170-180 resting and close to 200 when active. She is supposed to be between 120 - 150 for her age, obviously a huge difference. So the cardiologists have started her on a beta blocker that almost immediately worked - when she took a nap about 30 minutes after the first dose, she was down to 140-150, which we have never really seen with Riley. Then when I was playing with her later (standing her up, rolling around, getting a bath) she got up to 160-170s. Now with her just sitting playing with her toys and talking with me she is in the 150-160s, so a good improvement. It will be a process, but we should be able to get her heart rate down with the beta blocker. We are on track to hopefully be home tomorrow.
Zoey had a soccer game yesterday and while she was still reluctant to get in there and mix it up or run ahead of kids and take it from them - she went unscored upon in goal again. It wasn't like they didn't take shots either, yesterday she had about 3 or 4 breakaways on her and she stoned them all!!! 2 of Zoey's girl cousins are very athletic, so we are hoping that she sticks with it and keeps going with some sports.
Zoey had a soccer game yesterday and while she was still reluctant to get in there and mix it up or run ahead of kids and take it from them - she went unscored upon in goal again. It wasn't like they didn't take shots either, yesterday she had about 3 or 4 breakaways on her and she stoned them all!!! 2 of Zoey's girl cousins are very athletic, so we are hoping that she sticks with it and keeps going with some sports.
Sunday, April 17, 2011
Spending the Day with my Girl
After starting my day snuggling with Zoey & playing a quick game of Memory, I spent the rest of the day hanging out with Riley at the hospital. Josh spent the night there like the awesome dad that he is. I don't know if it makes me a bad mom, but I just can't spend the night there. It stresses me out too much and I end up with a migraine. I know that Riley is in excellent care with the nursing staff there though. Riley did a little snoozing after I first got there, so I settled in watched some TV and crocheted some booties. After lunch, Riley I took a walk through the hospital.
One of the great things about Children's is that they have these little red wagons for the kids to ride in and their equipment is wireless. I got Riley all comfy cozy in her wagon and off we went on a circuit tour of the hospital. We even went outside into the garden and just say and enjoyed the fresh air for a few moments. We spent a good deal of time in front of the fish tank and Riley seemed to really enjoy that. Overall she had a great day. No more throwing up (dad seems to be the lucky one for that), but I did get some raspberries and smiles out of the little one today.
Even though she is off the O2, we are still waiting for the all clear from the Pulmonologist before we can jet out of that place. Of course they don't work on weekends, but what are you going to do?
One of the great things about Children's is that they have these little red wagons for the kids to ride in and their equipment is wireless. I got Riley all comfy cozy in her wagon and off we went on a circuit tour of the hospital. We even went outside into the garden and just say and enjoyed the fresh air for a few moments. We spent a good deal of time in front of the fish tank and Riley seemed to really enjoy that. Overall she had a great day. No more throwing up (dad seems to be the lucky one for that), but I did get some raspberries and smiles out of the little one today.
Even though she is off the O2, we are still waiting for the all clear from the Pulmonologist before we can jet out of that place. Of course they don't work on weekends, but what are you going to do?
4-17-11
So Riley Rose is still in the hospital and we have an all new set of things that we are dealing with. She seems to be getting over the viral infection that she had as her oxygen that is being pushed is way down and her O2 stays up even when she sleeps. Now though she is vomiting a lot - in the last 2 hours she has had about 4 throw-ups. The GI folks thought it might be the bollus feeding that was doing it, so they put her on continuous feeds and yesterday nary any spit ups, but now this morning she hurls. I'm hoping that it might just be that she has mucus mixing down in her stomach and is turning her stomach and she needs to get it out. Who knows though - we are guessing just as much as the doctor's are. Really theirs is just an educated guessing game.
So last week was awful for me (as it was for the rest of my family) as I find out my little girl was going back in the hospital while I was 40k feet over Texas (have to love having email/internet access on a plane). So I spent the first hour or so that I was in LA sitting in the airport waiting to find out what was going on and whether I should just get back on the next flight I could and come right back home. Michele told me that her and mom could handle it and that I should stay, but it was phenomenally frustrating - I was able to do even less then normal to help my little girl and now I couldn't even push the doctor's for answers or solutions. Of course I took out my frustrations on Michele and my Mom - snapping at them on the phone because they weren't asking the questions that I would ask and didn't have the answers that I wanted/needed. I always tried to apologize profusely to them and let them know it had nothing to do with them. They are wonderful woman who have to deal with my frustration with my daughters situation.
On a very good note, through it all Zoey was very very good. Whenever we have a Riley situation Zoey has always been very well behaved and understanding. So as a reward for being so good Nana, Zoey and I went to see Rio yesterday - she loved the music and even got up and danced in the aisle of the theater at the end of the movie during the credits/music. She enjoys dancing and laughing so much - I truly hope that she never losses that uninhibitedness that so many of us lose as we get older. I will do everything that I can to let her just love/enjoy the moment that she is in.
So last week was awful for me (as it was for the rest of my family) as I find out my little girl was going back in the hospital while I was 40k feet over Texas (have to love having email/internet access on a plane). So I spent the first hour or so that I was in LA sitting in the airport waiting to find out what was going on and whether I should just get back on the next flight I could and come right back home. Michele told me that her and mom could handle it and that I should stay, but it was phenomenally frustrating - I was able to do even less then normal to help my little girl and now I couldn't even push the doctor's for answers or solutions. Of course I took out my frustrations on Michele and my Mom - snapping at them on the phone because they weren't asking the questions that I would ask and didn't have the answers that I wanted/needed. I always tried to apologize profusely to them and let them know it had nothing to do with them. They are wonderful woman who have to deal with my frustration with my daughters situation.
On a very good note, through it all Zoey was very very good. Whenever we have a Riley situation Zoey has always been very well behaved and understanding. So as a reward for being so good Nana, Zoey and I went to see Rio yesterday - she loved the music and even got up and danced in the aisle of the theater at the end of the movie during the credits/music. She enjoys dancing and laughing so much - I truly hope that she never losses that uninhibitedness that so many of us lose as we get older. I will do everything that I can to let her just love/enjoy the moment that she is in.
Wednesday, April 13, 2011
Good Timing
The good thing about being in the hospital today was that I got to meet with Karlene Coleman, a certified Genetics Counselor who works with Dr. Kobrynski. It was so great to meet with her and talk about Riley & 22q in general. I was asking what to expect from out appointment with Dr.Kobrynski in August (which we are still on the waiting list for) and she said that (a) it will be a long appointment (b) there will be lots of paperwork and most importantly (c) Dr. Kobrysnki will do a thorough screening of Riley, basically head to toe so that she can do a proper assessment of Riley's condition. Karlene also said that after 12 months, we'll be seeing the dentist in that group and the Cardio-Facial doc as well, all of whom have been specializing in 22q since about 1995. It is so great to be in an area where we actually have specialists well versed in this syndrome and that we have places to turn for help. I am eagerly looking forward to the 22q at the Zoo Wold Wide Awareness Day (buy you t-shirt on line at http://www.22q.org/ on the events tab to help support the cause!!!!) where we'll be able to meet with other families in the same boat as us. Karlene is talking about setting up a local blog where families in the area can post the questions & concerns and get feedback from the other families. I think that would be an awesome avenue to talk things out.
Ask and Ye Shall Receive ...
So as I was typing the last post, our respiratory therapist came in and changed out Riley's cannula. Poor baby was sleeping and he totally messed up her moose. But she is now on a regular cannula and on only 1 liter of O2 (down from 10 liters last night). We may be looking at a room change in our near future ... which is good since this room has a view of the building next to us. Boring!
Dr. Pham
Well I got to meet with Dr, Pham just before lunch and got the low down on how things are going with Riley. On the good side all of the cultures have come back negative, so this is definitely something viral. I asked (again) what we should be doing at home to help prevent some of these illnesses other than what we are currently doing ... washing hand, using Lysol, wearing masks around her when we don't feel well, etc. Dr. Pham said that what we are doing is good, but that often virus' are contagious even before the fist symptom make an appearance. Dr. Pham will be touching base with our Immunologist, Dr. Kobrinsky to see if we should have Riley's T-cell's checked again and with Cardiology to see what their input is for Riley's case. The biggest thing is that we need to keep clearing Riley's nasal passage to keep it clear for her to be able to breath. I asked at what point she'll be able to mouth breath, and the doctor told me between 6 and 8 months, so hopefully she'll be doing that soon.
Dr. Pham said that she would expect our periods at home to be longer and longer between hospital visits and time in the hospital to be shorter and shorter. From what she said and from what other parents in the support groups I have found said, this first year is the very worst. Not that I want to rush Riley's babyhood because it is so precious, but I will be so grateful to get through these first 12 months or so.
Our immediate goal is to get Riley off the high-flow cannula. After that we will no longer be considered critical and we can move out of the PICU either to a regular patient room, or to the Cardiac Step-down Unit, depending on what the Cardiologist thinks. Personally I'd rather go to the Step-down Unit, only because I am familiar with it and know the drill there. Maybe we'd even know the nurses on duty too.
Dr. Pham said that she would expect our periods at home to be longer and longer between hospital visits and time in the hospital to be shorter and shorter. From what she said and from what other parents in the support groups I have found said, this first year is the very worst. Not that I want to rush Riley's babyhood because it is so precious, but I will be so grateful to get through these first 12 months or so.
Our immediate goal is to get Riley off the high-flow cannula. After that we will no longer be considered critical and we can move out of the PICU either to a regular patient room, or to the Cardiac Step-down Unit, depending on what the Cardiologist thinks. Personally I'd rather go to the Step-down Unit, only because I am familiar with it and know the drill there. Maybe we'd even know the nurses on duty too.
Finally some Food!
After almost exactly 48 hours, Riley is finally about to get some food in her tummy. As she has been putting everything and anything that will fit into her mouth I am sure that she will be very happy to have some formula. We'll be starting her bolus feed over an hour vs her traditional half-hour just to make sure that her tummy can handle it right not. Liz, Riley's nurse, just suctioned her out and gave her some Afrin to help clear out her nasal passages. Hopefully that will do the trick and get her closer to coming home.
Back in the Hospital
Despite the fact that we told ourselves that we would not be coming back to Egleston, here we are again. Riley started getting sick last week and Nana took her to the pediatrician last Monday. There they told us that she had acute sinusitis and gave us a prescription for an antibiotic. We were told that if Riley developed a fever that we should come back to the office. Well that started on Friday night - Riley got a fever of 100.4 and we gave her some Tylenol and were fever free until Sunday night when she had a low grade fever of 99. We opted to have Nana take Riley hack to the pediatrician on Monday and Dr. Landis decided that since Riley had a fever of 101.8 and her O2 was down to 88%, it was best if we just took out little selves right back to Egleston. Riley & I sat in the ER from about 1:30 on Monday until 10:00 pm that evening when they finally admitted us to the PICU. Riley had a chest x-ray, blood work drawn, several breathing treatments and an IV put in while we were there.
This is our first visit to the PICU and we are used to being on the cardiac floor, overall these are all new nurses and techs for us to get to know. Nana spent the day her in room 4123 all day yesterday and I took a half day so that I could pick up Zoey and bring her to the Robey's for a couple of hours (thanks Becky & Jeff!). Oh yeah, Josh is in California for work, so Nana & I are running the show this week. It seems that Riley will be here for a couple of days as they need to get the results from the cultures they took in the ER and that takes at least 48-hours. They are about 99% sure that what Riley has is viral, but she is on an antibiotic just to be safe. The biggest thing that we are focusing on is getting Riley off the high-flow nasal cannula and have her hold her O2 levels at the same time. Poor baby hasn't had anything to eat since noon on Monday and having personally been on an IV for 2 days, I know you still get hungry regardless of whether or not you are getting all the nutrients that you need or not. The reason she's not eating is that with the high-flow cannula, the air going into her nostril is higher than she can breath it in and that in conjunction with adding formula would most likely make her vomit.
So now I am sitting around waiting on a doctor to come by and tell me what is going on. We're curious to know if we should have Riley's T-cell count tested again, and if we should expect every cold to turn into something more serious that will land us back here. Or is some of this purely due to the fact that she is only 6-months old and as her system develops and she continues to grow her immunities then things shouldn't be so bad in the future. That is what the ER doc thinks, but the doc on call yesterday that spoke with my mother-in-law seems to think its like a 50/50 thing with her age combined with the 22q. It just seems like each doctor says something different. So which is it?
This is our first visit to the PICU and we are used to being on the cardiac floor, overall these are all new nurses and techs for us to get to know. Nana spent the day her in room 4123 all day yesterday and I took a half day so that I could pick up Zoey and bring her to the Robey's for a couple of hours (thanks Becky & Jeff!). Oh yeah, Josh is in California for work, so Nana & I are running the show this week. It seems that Riley will be here for a couple of days as they need to get the results from the cultures they took in the ER and that takes at least 48-hours. They are about 99% sure that what Riley has is viral, but she is on an antibiotic just to be safe. The biggest thing that we are focusing on is getting Riley off the high-flow nasal cannula and have her hold her O2 levels at the same time. Poor baby hasn't had anything to eat since noon on Monday and having personally been on an IV for 2 days, I know you still get hungry regardless of whether or not you are getting all the nutrients that you need or not. The reason she's not eating is that with the high-flow cannula, the air going into her nostril is higher than she can breath it in and that in conjunction with adding formula would most likely make her vomit.
So now I am sitting around waiting on a doctor to come by and tell me what is going on. We're curious to know if we should have Riley's T-cell count tested again, and if we should expect every cold to turn into something more serious that will land us back here. Or is some of this purely due to the fact that she is only 6-months old and as her system develops and she continues to grow her immunities then things shouldn't be so bad in the future. That is what the ER doc thinks, but the doc on call yesterday that spoke with my mother-in-law seems to think its like a 50/50 thing with her age combined with the 22q. It just seems like each doctor says something different. So which is it?
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