Today is supposed to be Homecoming Day, but I am hesitant to believe that until all 3 of us are strapped into the car and actually driving away from this hospital. Josh got trained on the g-tube care and maintenance yesterday after I was home. Luckily he's a good teacher and was able to come home and share that information with me. I have to say that I freaked out a little bit - not about doing it myself, but about leaving that in someone else's hands (namely daycare). What is something goes wrong and we're not there? I know that the nurse assured Josh yesterday that should the tube pop out, it is not a life & death situation, but I'd like to see any new g-tub mom not be freaked out by that happening.
We are steadily working on whatever the nurses & doctors throw our way today on the ever changing Discharge List (I have yet to see a real list, so I doubt that one actually exists). At this particular moment, Riley is sitting in her car seat, and will hopefully stay calm enough to sit here for 90 minutes so that she can "pass" and we are take her home in that very car seat later today. We have a ginormous list of medications that we need to get filled so that we can give her what she needs once we are at home. I have now mastered the art of fortifying breast milk and mixing up the right calorie formula for the g-tube bag. I know that Riley will have about 40-million different doctors appointments, starting with her pediatrician tomorrow. There is no rest for the weary!
Thankfully my sister Danielle is here and can help with Zoey. Zoey has her dreaded flu shot tonight at 6:00 and we are hoping that we will be able to make it home in time to take her there ourselves as I had to bribe Zoey with going to Bruesters for ice cream afterwards. Hey, a mom have to do, what a mom has to do. The poor kid got 5 shots at her August appointment and she has not forgotten that experience in the least.
We have a bottle of champagne chilling in the fridge and are looking forward to cracking that open later today in celebration of our Riley Rose.
Tuesday, November 2, 2010
Sunday, October 31, 2010
10/31/10 - 11:25 am
So the g-tube guy got here at 11:15 am for our 10:00 am appointment. Good thing we didn't have anything to do but sit around & wait for him. He showed us how to operate the pump and associated equipment. Thank goodness it is very simple ... so easy a Caveman could do it. We even have a little back pack to hold everything if we need to be mobile.
Now we need to get the training from the nurse on how to handle the Riley part of the feeding. That's where we need the real help. Evidently there is a slim chance of the g-tube coming out, but they have assured us that we, yes Josh & I, will be able to put a new one in. I find that a little freaky, but I'll have to believe them on that.
We are now one step closer to bringing Riley home with our necessary training. Infant CPR - check. Feeding pump training - check.
Now we need to get the training from the nurse on how to handle the Riley part of the feeding. That's where we need the real help. Evidently there is a slim chance of the g-tube coming out, but they have assured us that we, yes Josh & I, will be able to put a new one in. I find that a little freaky, but I'll have to believe them on that.
We are now one step closer to bringing Riley home with our necessary training. Infant CPR - check. Feeding pump training - check.
10/31/10 - 10:45 am
So, Riley is having a breathing treatment right now with the Respitory Therarist right now which will hopefully help to dry out some of the mucus in her nose & throat.
She looks absoluely precious in her ghost costume, it's just too bad that she can't go trick or treating yet, but Zoey is already planning on her & Riley both being witches next year
She looks absoluely precious in her ghost costume, it's just too bad that she can't go trick or treating yet, but Zoey is already planning on her & Riley both being witches next year
10-31-10 8:30am
So I just talked with the nurse who finally got Riley into a pretty sound sleep this morning (around 6:50am). She feels it may just be some really bad gas and her tube may not have been venting right - it makes sense with the vegeling as well. She might have been trying to get it out of her body and it just wasn't happening. Now for something I never thought I would say - let's hope my daughter has some bad gas - and not some severe cold that has to be monitored closely.
10-31-10 5:15am
So Riley is doing something called vageling - when she is moving her bowels, trying to get mucus out of her little body, or just cranky she basically is clamping down her whole body. This isn't good as it normally means she isn't breathing, but most of us do it at one time or another. Also, she has a lot of mucus so they have taken a culture of it and sent it down to the lab to be checked for RSV. It is phenomenally common in adults and healthy older children, but in very young babies it can be pretty nasty - so they want to catch it early. This would certainly delay her coming home.
10-31-10 2:30am
So they have taken Riley to the nurses station to observe her as what I am describing her doing she isn't doing once all the nurses get in here. It has been every hour or 40 minutes now for about 6 hours that she loses her little mind and she can't really get any good sleep.
10-31-10 1:15am Happy Halloween!!!
So I am getting to spend the first full night with my daughter since she has been born. While certainly wonderful to see her, I am working on about 20 minutes of sleep so far as every little cough or whimper from her leads me to believe that she is in distress. I'm worried that we are going to have difficulties at home with telling a cry from a 'I'm in Trouble' cry. She even got to the point tonight where I asked for the doctor to come take a look at her due to her being inconsolable (which is not anywhere in her personality so far) - the doctor and the nurse explained to me that she may be feeling the surgery and new sensatoins fully now since they have essentially weened her off the pain medicine. So I will go back to my little flower now and try to get some sleep with one eye open.
Saturday, October 30, 2010
10/30/10 - 9:45 pm
I am amazed that I can finally start to think about bringing my daughter home realistically now. I am excited to think about what she will be dressed in, and how I will bring her home in the blanket I crocheted for her before she was even born. It's finally started to be more real and I know that I still have so much that I need to get done in preparation for her homecoming. Thank goodness for my mom & sister being here to help since I am technically supposed to be on bed rest. I'm trying, I swear! But it's very had to comply with.
Thank you, thank you for all the prayers and good thoughts sent Riley's way. It amazing to know how much she is loved already.
Thank you, thank you for all the prayers and good thoughts sent Riley's way. It amazing to know how much she is loved already.
10-30-10 4pm WOW
OK - so the doctors, nurses and Michele and I had a nice discussion around 12:30pm about Riley's future and they all feel that she will be going home on Tuesday, so Michele and I elected to ask for her to stay here. They admitted that someone should have told us about the later rounds time yesterday and when I tried to apologize for my frustration, they wouldn't let me - they really are all phenomenal at what they do.
So Michele and I are going to need to start training on the tube/feeding/taking care of our newest daughter. We also will be seeing an immunologist to make sure that her immunities are good. She will go home on calcium supplements to make sure that she keeps good levels - this is for her heart issue as well as preventing skeletal malformation and seizures.
This step down area is wonderful. We have a private room, with a shower, bathroom, a couch/bed, chair and desk. The folks over here have been wonderful. Just while I was typing this, we have met with the head immunologist who also happens to run the Southwest Center of Excellence for 22q. It looks as though we will possibly be going home on Monday if things keep going good. Also while typing we just heard from the home pump people and they are going to bring all our equipment and train us here in the hospital tomorrow at 10am.
So Michele and I are going to need to start training on the tube/feeding/taking care of our newest daughter. We also will be seeing an immunologist to make sure that her immunities are good. She will go home on calcium supplements to make sure that she keeps good levels - this is for her heart issue as well as preventing skeletal malformation and seizures.
This step down area is wonderful. We have a private room, with a shower, bathroom, a couch/bed, chair and desk. The folks over here have been wonderful. Just while I was typing this, we have met with the head immunologist who also happens to run the Southwest Center of Excellence for 22q. It looks as though we will possibly be going home on Monday if things keep going good. Also while typing we just heard from the home pump people and they are going to bring all our equipment and train us here in the hospital tomorrow at 10am.
10-30-10 12pm FRUSTRATION!!!!
So I have reached a frustration point for the first time with the administration of my child. While CHOA is a wonderous place that so many people have given so much of their time and energy to - they are some of the worst communicators on the planet. Just for the record it is not just us, almost every parent we run in to talks about not getting the information that we need.
A very quick recap:
According to numerous hospital administrators at Northside and CHOA, due to our insurance we had 72 hours at CHOA to decide whether Riley was staying here and getting discharched to home from step down or going back to Northside to do our training and such. That 72 hours was around 11am this morning.
Well we told them we were coming in after rounds this morning (because we are not allowed in there with her from around 7am - 10:30am every morning) to talk with the doctors and decide what was going on. So yesterday a couple of doctors and nurses tell us that they don't know why Riley couldn't go home in a couple of days - barring any complications and we could probably due step down here. Well with Michele's physical issues (she is supposed to be on bed rest) and other home complications - coming down to CHOA for the next week was not optimal, but we decided that if (barring complications) she could be home by Tuesday - then we would have her stay here. This way she didn't have to go thru a battery of more admitance tests back at Northside.
Well we have been here at the hospital since 9:30am this morning and here is the fun part - a couple of nurses kept coming out in to the hallway that I was sitting in (which was right in front of the door to CICU) and telling me just a couple of more minutes. Well someone finally told me that weekend rounds start and end LATER THEN DURING THE WEEKDAY!!!!! Well if that is the case why were we never told that - Michele and I could have come down early this morning and discussed the path forward.
Riley's nurse finally came out to talk with me as numerous nurses told her of our plight. I explained to her that the 72 hour window had come and passed and she told me that they were making plans to move Riley, maybe later today or tomorrow morning. Without talking to my wife and I?!?!?! I expressed my dissatisfaction with their unilateral decision and told her that we would like her to stay here if (barring complications) they thought she was going to go home by Tuesday and Michele and I was going to get trained. If it was going to be longer we would rather go back to Northside. The nurse said, no - they couldn't envision it being longer then Tuesday. During this time she apologized and said that it would be probably 11:30am before the rounds were thru - I showed her the clock on my computer which stated it was 11:29am. She said that it would probably be another 45 minutes.
So I went to the waiting room to break the news to my wife that she could either stay here and hurt her health or probably not see her child today - she was obviously frustrated. The nurse called a couple of minutes later and said that the PA for Riley stated that she saw no reason for Riley not going home 'this week'. I reminded her that the vagueness of her statement was unacceptable - is it Tuesday or after. She stuttered something and they stated that the doctor would talk to us when we came in to see Riley. I asked her when that would be and she stated that she didn't know.
I know that I should be calm and cool about this and focus on Riley, but my wife's health is falling apart, my older daughter (who has been wonderful) asked me this morning if we all - as a family - were going to the neighborhood Halloween Festival and I couldn't give her an answer, and these folks here are not talking to us about decisions they are making. I'm not asking for a voice in whether she gets X medicine or Y medicine to fix her issue, but when it comes to her future care - I think we should have a say. There are signs everywhere around this place - literally in every room that I have been in - that say 'Be an advocate for your child. Question the doctors and nurses about what they are doing and why.' Then when you actually do that - they look at you like you have two heads and then don't have any answers.
A very quick recap:
According to numerous hospital administrators at Northside and CHOA, due to our insurance we had 72 hours at CHOA to decide whether Riley was staying here and getting discharched to home from step down or going back to Northside to do our training and such. That 72 hours was around 11am this morning.
Well we told them we were coming in after rounds this morning (because we are not allowed in there with her from around 7am - 10:30am every morning) to talk with the doctors and decide what was going on. So yesterday a couple of doctors and nurses tell us that they don't know why Riley couldn't go home in a couple of days - barring any complications and we could probably due step down here. Well with Michele's physical issues (she is supposed to be on bed rest) and other home complications - coming down to CHOA for the next week was not optimal, but we decided that if (barring complications) she could be home by Tuesday - then we would have her stay here. This way she didn't have to go thru a battery of more admitance tests back at Northside.
Well we have been here at the hospital since 9:30am this morning and here is the fun part - a couple of nurses kept coming out in to the hallway that I was sitting in (which was right in front of the door to CICU) and telling me just a couple of more minutes. Well someone finally told me that weekend rounds start and end LATER THEN DURING THE WEEKDAY!!!!! Well if that is the case why were we never told that - Michele and I could have come down early this morning and discussed the path forward.
Riley's nurse finally came out to talk with me as numerous nurses told her of our plight. I explained to her that the 72 hour window had come and passed and she told me that they were making plans to move Riley, maybe later today or tomorrow morning. Without talking to my wife and I?!?!?! I expressed my dissatisfaction with their unilateral decision and told her that we would like her to stay here if (barring complications) they thought she was going to go home by Tuesday and Michele and I was going to get trained. If it was going to be longer we would rather go back to Northside. The nurse said, no - they couldn't envision it being longer then Tuesday. During this time she apologized and said that it would be probably 11:30am before the rounds were thru - I showed her the clock on my computer which stated it was 11:29am. She said that it would probably be another 45 minutes.
So I went to the waiting room to break the news to my wife that she could either stay here and hurt her health or probably not see her child today - she was obviously frustrated. The nurse called a couple of minutes later and said that the PA for Riley stated that she saw no reason for Riley not going home 'this week'. I reminded her that the vagueness of her statement was unacceptable - is it Tuesday or after. She stuttered something and they stated that the doctor would talk to us when we came in to see Riley. I asked her when that would be and she stated that she didn't know.
I know that I should be calm and cool about this and focus on Riley, but my wife's health is falling apart, my older daughter (who has been wonderful) asked me this morning if we all - as a family - were going to the neighborhood Halloween Festival and I couldn't give her an answer, and these folks here are not talking to us about decisions they are making. I'm not asking for a voice in whether she gets X medicine or Y medicine to fix her issue, but when it comes to her future care - I think we should have a say. There are signs everywhere around this place - literally in every room that I have been in - that say 'Be an advocate for your child. Question the doctors and nurses about what they are doing and why.' Then when you actually do that - they look at you like you have two heads and then don't have any answers.
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