5 months, 3 weeks, 2 days since diagnosis
67 days away from home
It hit me today. Riker's going to live. She's not completely out of the woods, yet, but chances are that my baby girl is going to make it. Visions of holidays and birthdays and proms pass before my eyes. I am now thinking about the joys and the heart aches that she will some day know. She's going to be our miracle and she's going to make it.
I can't say that the fear of relapse doesn't haunt me completely. I have to remind myself that, although it could happen, it's not likely to happen. I need to stay positive and continue to enjoy every moment - every gift that my sweet girls give me.
Riker is doing better everyday. Our GI appointment and clinic visit today were simple and routine. She looks great, her labs are great... she's doing great. What was managing critical bone marrow transplant/cancer issues has become managing normal baby issues. Riker has been an absolute delight - playing most of the day, laughing and engaging me. Riker has also started to fight sleeping! How frustrating to have her wake every hour all night long but how reassuring that she only wants to play. Do I really have a normal 9 month old? What a change this is. It is definitely worth the frustration.
Now, the lure of home is much closer. Soon, we'll be sent over 100 miles away from Boston and the hospital that has saved Riker's life. I am scared and hopeful. And my heart aches to have a place to call home when we get there. I crave being snuggled into our warm house decorating a Christmas tree and drinking cocoa with the girls. The house we want to call home is so close that I can taste it. The bank just needs to respond to our offer! In reality, though, they probably will not answer prior to the new year. The holidays are not a good time to get anything done in the corporate world.
But, I will continue to hope because I want to come home and stay home. I don't want to keep moving my family about. Valentine and Riker both need stability so that they can grow and so that we all can heal. Now that Riker's body is healing, we need to turn our attention to our battered family. I need to give Valentine the attention she's been lacking from her mother and help her work though the abandonment issues she's surely developed. I need to reintroduce Valentine to her sister and make sure that they are not resentful or scared of each other. I need to repair what months of separation and severe stress has done to my marriage.
"You were sick, but now you're well, and there's work to do." ~Kurt Vonnegut, Timequake
Monday, November 28, 2011
Saturday, November 26, 2011
November 25 & 26, 2011 - Day 55 & 56
5 months, 3 weeks, since diagnosis
65 days away from home
Clinic was uneventful. The counts were fine - she didn't even need a transfusion. Actually, they're very happy with her counts. That's a relief.
We got to see Riker's primary oncologist today who we never get to see. I love her. She always chuckles and tells me I'm a lot like her. She must be the busiest woman I have ever known and she seems to love every minute of it. (Yes, Mina, she's even busier than you!) Despite the fact she literally runs the entire bone marrow transplant program, she always takes the time to listen to me. She addresses all my concerns and never blows me off. Even though Riker's feeling better than she has in weeks, Dr. Lehman still could see that she's "off."
In case it's an ulcer or some damage to her throat from the acid reflux, she prescribed an oral med that might help. She took the time to hold Riker and talk to her. She made me feel like she was genuinely looking at my baby like a baby not just a cancer patient. She even said the fellow should look in Riker's ears. I have been fighting so hard with the team to treat Riker as a whole child. She isn't just a cancer patient. She can still have all the normal "baby things." I am put at ease by a doctor who does all the things I am so familiar with our pediatrician at home doing.
Dr Lehman will also be the doctor making the decisions about Riker's care once we go home. She thinks will be headed home pretty soon and she also thinks we can get a lot of our care close to home, in Scarborough. She's a lot less worried than some of the doctors have been about how well Riker will do. Yea, she definitely makes me feel better overall.
So, today, the family has left for Maine again and it's just Riker and I. I miss them so much but it's also a bit of a relief when they leave. All four of us cramped in a tiny room for 3 days is a lot. Jon is going absolutely nuts by the time he leaves and Valentine's not much better. When they're gone it's quiet here and I need some quiet. Things will be different when we're all home. Being here is a lot like being stuck in a hotel room. Trapping a 3 year old in a hotel room is a disaster waiting to happen and my husband is just as bad.
So, although I already miss them, I was ready for them to head back, too. Hopefully, I'll be going home to them very soon.
65 days away from home
Clinic was uneventful. The counts were fine - she didn't even need a transfusion. Actually, they're very happy with her counts. That's a relief.
We got to see Riker's primary oncologist today who we never get to see. I love her. She always chuckles and tells me I'm a lot like her. She must be the busiest woman I have ever known and she seems to love every minute of it. (Yes, Mina, she's even busier than you!) Despite the fact she literally runs the entire bone marrow transplant program, she always takes the time to listen to me. She addresses all my concerns and never blows me off. Even though Riker's feeling better than she has in weeks, Dr. Lehman still could see that she's "off."
In case it's an ulcer or some damage to her throat from the acid reflux, she prescribed an oral med that might help. She took the time to hold Riker and talk to her. She made me feel like she was genuinely looking at my baby like a baby not just a cancer patient. She even said the fellow should look in Riker's ears. I have been fighting so hard with the team to treat Riker as a whole child. She isn't just a cancer patient. She can still have all the normal "baby things." I am put at ease by a doctor who does all the things I am so familiar with our pediatrician at home doing.
Dr Lehman will also be the doctor making the decisions about Riker's care once we go home. She thinks will be headed home pretty soon and she also thinks we can get a lot of our care close to home, in Scarborough. She's a lot less worried than some of the doctors have been about how well Riker will do. Yea, she definitely makes me feel better overall.
So, today, the family has left for Maine again and it's just Riker and I. I miss them so much but it's also a bit of a relief when they leave. All four of us cramped in a tiny room for 3 days is a lot. Jon is going absolutely nuts by the time he leaves and Valentine's not much better. When they're gone it's quiet here and I need some quiet. Things will be different when we're all home. Being here is a lot like being stuck in a hotel room. Trapping a 3 year old in a hotel room is a disaster waiting to happen and my husband is just as bad.
So, although I already miss them, I was ready for them to head back, too. Hopefully, I'll be going home to them very soon.
November 24, 2011 - Day 54
5 months, 2 weeks, 5 days since diagnosis
63 days away from home
Happy Thanksgiving!
We have a lot to be thankful for. I have had 5 amazing months with my youngest daughter. I've gotten to know her better than I ever would have if I had been living my normal life and working away from home nearly 50 hours a week. I have 2 brave, strong, phenomenal daughters. My 3 year old is smart and healthy and growing. My husband is by my side no matter what. We have a lot more to be thankful for than we have to be bitter about. I think most of us do, when we really look at it.
It was a good day. We ate warm sticky buns and cheese and pepperoni. We spent time together and we almost never get to do that. We had no where we had to go and nothing we had to do. That almost never happens.
Unfortunately, in the middle of dinner, Riker needed a diaper change and there was mucus in her stool. So, in the middle of dinner, we ended up making our way with a dirty diaper to the ER. Such is the life of a cancer family. I knew that we'd likely be sent home but we still had to sit in the ER for hours before we were released. They wanted to test her diaper and draw her blood for some testing including a blood count which in routine for oncology patients.
At some point, I had a nurse sit with Riker so I could use the bathroom. As I came out of the bathroom, I heard the doctors discussing low blood counts. I said, "you're not taking about, Riker, are you?" They seemed almost embarrassed that I had heard and told me that they were, indeed, talking about Riker. When I asked what was going on, they told me that her counts where all very low. I must have turned white as a sheet and I could feel tears burning hot in my eyes. I felt panic wanting to creep in.
They reassured me and told me they were drawing again. They thought the first draw might have been over diluted with saline. I gathered my wits for a moment and asked them if the oncologist had seen the results and he hadn't. I had to remind myself that ER doctors do not understand cancer, let alone bone marrow transplant. I shouldn't be worried until the oncologist is worried. But the thought was already there.
THIS is my worst nightmare. Any mother of a child with cancer will tell you... we hang all our hopes on those blood counts. They HAVE to be ok. The cancer CANNOT come back! I know people who's children have relapsed only months after a bone marrow transplant. Cancer is not fair. It plays dirty.
In the end, they weren't worried... in the end they sent us home because we were going to clinic first thing in the morning. They'll run cultures on her stool and it's not likely to be anything. We might need a blood transfusion in the morning because although her counts are low, they're not overly low for a bone marrow transplant patient. But, will I every really be reassured? I'll always be looking over my shoulder for this monster who's chasing after us.
63 days away from home
Happy Thanksgiving!
We have a lot to be thankful for. I have had 5 amazing months with my youngest daughter. I've gotten to know her better than I ever would have if I had been living my normal life and working away from home nearly 50 hours a week. I have 2 brave, strong, phenomenal daughters. My 3 year old is smart and healthy and growing. My husband is by my side no matter what. We have a lot more to be thankful for than we have to be bitter about. I think most of us do, when we really look at it.
It was a good day. We ate warm sticky buns and cheese and pepperoni. We spent time together and we almost never get to do that. We had no where we had to go and nothing we had to do. That almost never happens.
Unfortunately, in the middle of dinner, Riker needed a diaper change and there was mucus in her stool. So, in the middle of dinner, we ended up making our way with a dirty diaper to the ER. Such is the life of a cancer family. I knew that we'd likely be sent home but we still had to sit in the ER for hours before we were released. They wanted to test her diaper and draw her blood for some testing including a blood count which in routine for oncology patients.
At some point, I had a nurse sit with Riker so I could use the bathroom. As I came out of the bathroom, I heard the doctors discussing low blood counts. I said, "you're not taking about, Riker, are you?" They seemed almost embarrassed that I had heard and told me that they were, indeed, talking about Riker. When I asked what was going on, they told me that her counts where all very low. I must have turned white as a sheet and I could feel tears burning hot in my eyes. I felt panic wanting to creep in.
They reassured me and told me they were drawing again. They thought the first draw might have been over diluted with saline. I gathered my wits for a moment and asked them if the oncologist had seen the results and he hadn't. I had to remind myself that ER doctors do not understand cancer, let alone bone marrow transplant. I shouldn't be worried until the oncologist is worried. But the thought was already there.
THIS is my worst nightmare. Any mother of a child with cancer will tell you... we hang all our hopes on those blood counts. They HAVE to be ok. The cancer CANNOT come back! I know people who's children have relapsed only months after a bone marrow transplant. Cancer is not fair. It plays dirty.
In the end, they weren't worried... in the end they sent us home because we were going to clinic first thing in the morning. They'll run cultures on her stool and it's not likely to be anything. We might need a blood transfusion in the morning because although her counts are low, they're not overly low for a bone marrow transplant patient. But, will I every really be reassured? I'll always be looking over my shoulder for this monster who's chasing after us.
November 23, 2011 - Day 53
5 months, 2 weeks, 4 days since diagnosis
62 days away from home
During a diaper change, I notice a "bump" or "bubble" on Riker's stomach. I had to call the clinic and let them know. They didn't sound very concerned but when I offered to take a picture, they jumped at the offer. The bump almost looked like a water drop in the picture.
Apparently, it looked like it could be shingles and they requested we come right in so they could test in. Upon further examination, they were significantly less worried but still "popped" it and sent it for testing.
An infection like shingles would likely kill Riker. She shouldn't be exposed and everyone she's around has either been vaccinated or has already had them. I am scared to death that after all this fighting a little infection could be the end of it.
Any mother with a baby at home worries about every bump, every cough, every rash. I'm not any mother anymore. The bumps, and coughs, and rashes... a change in behavior... it could be our only clue before Riker gets really sick. And if Riker gets sick, she might not make it. At this point, the chances of her getting an infection that kills her are far higher than the possibility that she'll relapse. It's enough to drive me crazy.
62 days away from home
During a diaper change, I notice a "bump" or "bubble" on Riker's stomach. I had to call the clinic and let them know. They didn't sound very concerned but when I offered to take a picture, they jumped at the offer. The bump almost looked like a water drop in the picture.
Apparently, it looked like it could be shingles and they requested we come right in so they could test in. Upon further examination, they were significantly less worried but still "popped" it and sent it for testing.
An infection like shingles would likely kill Riker. She shouldn't be exposed and everyone she's around has either been vaccinated or has already had them. I am scared to death that after all this fighting a little infection could be the end of it.
Any mother with a baby at home worries about every bump, every cough, every rash. I'm not any mother anymore. The bumps, and coughs, and rashes... a change in behavior... it could be our only clue before Riker gets really sick. And if Riker gets sick, she might not make it. At this point, the chances of her getting an infection that kills her are far higher than the possibility that she'll relapse. It's enough to drive me crazy.
November 21 & 22, 2011 - Day 51 & 52
5 months, 2 weeks, 3 days since diagnosis
61 days away from home
Things are falling into a pattern here at the Ronald McDonald House. I thought I'd be lonely be the days are nice with just Riker and I. I am able to get more work done and it's not so hard to keep up with all her care when there are not any distractions. I'm surprised that things are going so well.
The nightly routine of drawing up all of her meds is even not so bad. I am up to 25 syringes a night. I have never been more thankful for that g-tube! I cannot imagine trying to get her to take all those meds orally. We'd be fighting over meds all day.
We had our first clinic visit and it was not too bad at all. Riker's potassium is still high so they doctors have put her back on the Bicitra for her electrolytes. We were worried that it was the cause of her throwing up right before she was re-admitted but she seems to be tolerating it just fine. She's a rock star.
The Thanksgiving holiday approaches and Jon will be bringing Valentine. It's strange to spend it away from home. Ever since Jon and I got the house, over 5 years ago, we've hosted Thanksgiving at our house. Last year, right before Thanksgiving, we lost Jon's father to cancer and the holiday just wasn't the same. Now, the family is short 4 more at their table.
Regardless, I look forward to seeing them and spending a little time together. We'll go over to the main house and make ourselves a plate so that we don't have to cook. Jon will be bringing some of the traditional snack food for the day. It will be nice to be together - even if it is just the 4 of us.
61 days away from home
Things are falling into a pattern here at the Ronald McDonald House. I thought I'd be lonely be the days are nice with just Riker and I. I am able to get more work done and it's not so hard to keep up with all her care when there are not any distractions. I'm surprised that things are going so well.
The nightly routine of drawing up all of her meds is even not so bad. I am up to 25 syringes a night. I have never been more thankful for that g-tube! I cannot imagine trying to get her to take all those meds orally. We'd be fighting over meds all day.
We had our first clinic visit and it was not too bad at all. Riker's potassium is still high so they doctors have put her back on the Bicitra for her electrolytes. We were worried that it was the cause of her throwing up right before she was re-admitted but she seems to be tolerating it just fine. She's a rock star.
The Thanksgiving holiday approaches and Jon will be bringing Valentine. It's strange to spend it away from home. Ever since Jon and I got the house, over 5 years ago, we've hosted Thanksgiving at our house. Last year, right before Thanksgiving, we lost Jon's father to cancer and the holiday just wasn't the same. Now, the family is short 4 more at their table.
Regardless, I look forward to seeing them and spending a little time together. We'll go over to the main house and make ourselves a plate so that we don't have to cook. Jon will be bringing some of the traditional snack food for the day. It will be nice to be together - even if it is just the 4 of us.
Sunday, November 20, 2011
November 19 & 20, 2011 - Day 49 & 50
5 months, 2 weeks, 1 day since diagnosis
59 days away from home
We are half way to day 100. We're 1/4 the way to day 200. We're 1/8 the way to being free.
Things are good. We've settled into the Ronald McDonald House and Riker seems to be back to her normal self. Having the entire family together was wonderful and I can't wait to have them back down next week for Thanksgiving.
We went back to 6 West for a blood-tube and level test today. Riker's sodium levels are good, her cyclosporin levels are good and they adjusted up her magnesium by a small amount. We're good :) Our next visit to clinic will be in two days on Tuesday.
Riker's still not eating - all her feeds are through her g-tube and they're going very well. I have been trying to offer her food right before and during her g-tube feed, though. I figure, we don't need to put her back on the bottle since she's already 9 months old. She's not interested in having me feed her at all but she's getting a little bit better at trying to feed herself.
Well, today, we had a HUGE milestone. Apparently, she knows what to do with her sippy cup! She didn't drink much of the water out of it but just lifting it up is a very big deal. She's not eaten in months and only rarely seen a sippy cup. I am thrilled.
I hope I will only have happy updates to share going forward. I am sure that there will still be bumps in the road but I am hopeful that we are now on the road to better days.
Friday, November 18, 2011
November 18, 2011 - Day 48
5 months, 1 week, 6 days since diagnosis
57 days away from home
We're out. And we're together as a family. It's hours away from home but anywhere can feel like home when you're together.
It wasn't an entirely easy day. It was a long process getting everything set for discharge. Valentine hasn't slept well in days so she was particularly difficult and oppositional. Jon is stressed and tired and hates to be away from home. Riker is still fussy. But it was still a good day.
Riker's now getting a sodium supplement added to her feeds 3 times a day and that should keep her levels stable. We'll go in on Sunday morning for a blood draw to make sure but they're not expecting any further problems at this point.
Even though the discharge went smoothly, we didn't all get back to the Ronald McDonald House until after 5. At that point, Riker was late for 4pm meds and late for a 5pm feed. This meant we did a lot of rushing about trying to get everyone and everything settled. And we did it. Our family was a team. It was amazing not being a one man show for just one day.
By 9:30, both the girls were asleep and all Riker's meds were drawn for the next day. Now Jon and I are just sitting together, listening to the sound of our babies breathing soundly. The room is quiet but not too quiet. Everything is perfect.
We're wiped but there are more meds to be given at 11 - so that's when I'll go to bed. Then back up at 5 to do it all over again :)
57 days away from home
We're out. And we're together as a family. It's hours away from home but anywhere can feel like home when you're together.
It wasn't an entirely easy day. It was a long process getting everything set for discharge. Valentine hasn't slept well in days so she was particularly difficult and oppositional. Jon is stressed and tired and hates to be away from home. Riker is still fussy. But it was still a good day.
Riker's now getting a sodium supplement added to her feeds 3 times a day and that should keep her levels stable. We'll go in on Sunday morning for a blood draw to make sure but they're not expecting any further problems at this point.
Even though the discharge went smoothly, we didn't all get back to the Ronald McDonald House until after 5. At that point, Riker was late for 4pm meds and late for a 5pm feed. This meant we did a lot of rushing about trying to get everyone and everything settled. And we did it. Our family was a team. It was amazing not being a one man show for just one day.
By 9:30, both the girls were asleep and all Riker's meds were drawn for the next day. Now Jon and I are just sitting together, listening to the sound of our babies breathing soundly. The room is quiet but not too quiet. Everything is perfect.
We're wiped but there are more meds to be given at 11 - so that's when I'll go to bed. Then back up at 5 to do it all over again :)
Thursday, November 17, 2011
November 17, 2011 - Day 47
5 months, 1 week, 5 days since diagnosis
56 days away from home
day #2 of current hospital stay
I had another melt down today. Riker's still in the hospital. For all intents and purposes, there have been no changes. Their close to managing her sodium levels and will be adding sodium to her feeds. I think we'll be discharged tomorrow afternoon at the latest.
The attending on is the same attending who's been on for nearly 2 weeks. She's the very attending who saw us through my worries about Riker. She was going to discharge us last Friday and every day after that until we were finally discharged on Tuesday. I don't think she's a fan of me and I'm most certainly not a fan of hers.
She was not pleased that I did not call when Riker threw up. She wasn't very gentle about telling, me either and made me feel like a failure. Only 14 hours out of the hospital and I didn't make the cut. She also asked me about how I mixed the formula and requested that I spend the night at the hospital so they could "watch me" take care of Riker. She wanted to make sure I could properly measure and mix the formula. She made me feel very small.
I ended up in Riker's very empty hospital room sitting on the floor bawling my eyes out. Riker was sitting on my lap also bawling her eyes out. Then one of the nurses came and and took her from me and told me to go take a walk. I felt like a crazy person. A couple other nurses came in and they were all looking at me funny. They told me that they didn't think I was crazy. They told me that they thought I was strong and that I was capable and blah blah blah.
Well, now my confidence is shaken. It wasn't very strong in the first place. Being home with a sick baby who needs round the clock meds and feeds off a constant pump that puts food directly into her belly is far from easy. I feel like I might not be able to do it. I really don't think I'm strong enough after all. I feel like throwing in the towel.
Clearly, I will not do that. I will keep moving ahead on step at a time. But I'm tired. I'm so tired.
56 days away from home
day #2 of current hospital stay
I had another melt down today. Riker's still in the hospital. For all intents and purposes, there have been no changes. Their close to managing her sodium levels and will be adding sodium to her feeds. I think we'll be discharged tomorrow afternoon at the latest.
The attending on is the same attending who's been on for nearly 2 weeks. She's the very attending who saw us through my worries about Riker. She was going to discharge us last Friday and every day after that until we were finally discharged on Tuesday. I don't think she's a fan of me and I'm most certainly not a fan of hers.
She was not pleased that I did not call when Riker threw up. She wasn't very gentle about telling, me either and made me feel like a failure. Only 14 hours out of the hospital and I didn't make the cut. She also asked me about how I mixed the formula and requested that I spend the night at the hospital so they could "watch me" take care of Riker. She wanted to make sure I could properly measure and mix the formula. She made me feel very small.
I ended up in Riker's very empty hospital room sitting on the floor bawling my eyes out. Riker was sitting on my lap also bawling her eyes out. Then one of the nurses came and and took her from me and told me to go take a walk. I felt like a crazy person. A couple other nurses came in and they were all looking at me funny. They told me that they didn't think I was crazy. They told me that they thought I was strong and that I was capable and blah blah blah.
Well, now my confidence is shaken. It wasn't very strong in the first place. Being home with a sick baby who needs round the clock meds and feeds off a constant pump that puts food directly into her belly is far from easy. I feel like I might not be able to do it. I really don't think I'm strong enough after all. I feel like throwing in the towel.
Clearly, I will not do that. I will keep moving ahead on step at a time. But I'm tired. I'm so tired.
Wednesday, November 16, 2011
November 16, 2011 - Day 46
5 months, 1 week, 4 days since diagnosis
55 days away from home
day #1 of current hospital stay
The last 24 hours have been tough. It started with discharge in the late afternoon yesterday. Then a fearful night's stay alone with Riker in a strange place. Finally ending with being re-admitted to the hospital after a scheduled clinic visit the next morning. Fantastic.
Our stay at the Ronald McDonald House was not easy. I have to prepare and give meds every few hours. I have to hang feeds and take them down every few hours. I'm always cleaning, mixing, or preparing feeds or meds. Riker has almost a dozen different meds at varying times and amounts. And they're not cheap. Some of the meds are only good for 14 days, too. All the time, she is constantly crying. Sometimes she's sleeping but it feels like mostly she's crying. It's even more exhasting than coming home with a newborn.
So here I am - alone and scared. Every little thing has me in a panic. Should I call? Is this ok? Am I doing this right? I've never mixed formula before - you'd think it'd be a no brainer - except I didn't have anything to measure the formula in or store it in. For some reason, I'm suppose to mix about 16-20 oz at once and store it in the fridge. In what? Well, we didn't think of that. I went to the main house and all they had was glad disposable tupperware. I suppose I could mix the formula in that. Odd...
I finally did find a gallon pitcher to store the formula in. Except when I shook it EXPLODED with a long bang all over the kitchen. ugh...
Then to top everything off, Riker threw up her 8pm feed at 11pm. I was just hanging her next feed and she started to throw up in her sleep. And really throw up at that. She hasn't thrown up in months. It was a lot, too. I think it was her whole feed. Do I call? Why didn't she digest any of that last feed over 3 hours? No, it will be ok... we have a clinic visit in the morning. Is her G-tube looking redder? Is it infected? It'll be ok... we have a clinic visit in the morning.
In the end, it was fine. We were readmitted because Riker's electrolites were off. Everything else is fine. Her sodium is down and her potassium is up. She essentially needs more salt in her diet. If her levels drop too far or too fast, they can cause seizures. So they just wanted her to be observed while they trouble shoot the problem. In an older patient, they'd just tell them to go home and eat some potato chips. So... it's pretty much just a very long day and a harmless pain in the ass.
And, unfortunately, this still does not explain what is wrong with my baby.
Jon and Valentine were already on the way so they're here now. Needless to say, the change in plans was quite disappointing to them. However, I'm trying to soak up the time with them. Looking on the bright side, it would be harder to do so if I was constantly drawing up meds with Riker screaming in the background. And it's always difficult having Valentine outside of her routine. Getting her to sleep in a strange place is close to impossible. I hate having to discipline or fight with her in the short time we have together.
Hopefully, Riker will be discharged again tomorrow. Hopefully, we'll have a short time to enjoy being a family again before the other half heads back to Maine.
55 days away from home
day #1 of current hospital stay
The last 24 hours have been tough. It started with discharge in the late afternoon yesterday. Then a fearful night's stay alone with Riker in a strange place. Finally ending with being re-admitted to the hospital after a scheduled clinic visit the next morning. Fantastic.
Our stay at the Ronald McDonald House was not easy. I have to prepare and give meds every few hours. I have to hang feeds and take them down every few hours. I'm always cleaning, mixing, or preparing feeds or meds. Riker has almost a dozen different meds at varying times and amounts. And they're not cheap. Some of the meds are only good for 14 days, too. All the time, she is constantly crying. Sometimes she's sleeping but it feels like mostly she's crying. It's even more exhasting than coming home with a newborn.
So here I am - alone and scared. Every little thing has me in a panic. Should I call? Is this ok? Am I doing this right? I've never mixed formula before - you'd think it'd be a no brainer - except I didn't have anything to measure the formula in or store it in. For some reason, I'm suppose to mix about 16-20 oz at once and store it in the fridge. In what? Well, we didn't think of that. I went to the main house and all they had was glad disposable tupperware. I suppose I could mix the formula in that. Odd...
I finally did find a gallon pitcher to store the formula in. Except when I shook it EXPLODED with a long bang all over the kitchen. ugh...
Then to top everything off, Riker threw up her 8pm feed at 11pm. I was just hanging her next feed and she started to throw up in her sleep. And really throw up at that. She hasn't thrown up in months. It was a lot, too. I think it was her whole feed. Do I call? Why didn't she digest any of that last feed over 3 hours? No, it will be ok... we have a clinic visit in the morning. Is her G-tube looking redder? Is it infected? It'll be ok... we have a clinic visit in the morning.
In the end, it was fine. We were readmitted because Riker's electrolites were off. Everything else is fine. Her sodium is down and her potassium is up. She essentially needs more salt in her diet. If her levels drop too far or too fast, they can cause seizures. So they just wanted her to be observed while they trouble shoot the problem. In an older patient, they'd just tell them to go home and eat some potato chips. So... it's pretty much just a very long day and a harmless pain in the ass.
And, unfortunately, this still does not explain what is wrong with my baby.
Jon and Valentine were already on the way so they're here now. Needless to say, the change in plans was quite disappointing to them. However, I'm trying to soak up the time with them. Looking on the bright side, it would be harder to do so if I was constantly drawing up meds with Riker screaming in the background. And it's always difficult having Valentine outside of her routine. Getting her to sleep in a strange place is close to impossible. I hate having to discipline or fight with her in the short time we have together.
Hopefully, Riker will be discharged again tomorrow. Hopefully, we'll have a short time to enjoy being a family again before the other half heads back to Maine.
Tuesday, November 15, 2011
November 14 & 15, 2011 - Day 44 & 45
5 months, 1 week, 3 days since diagnosis
day #54 of current hospital stay
We were discharged today. We're finally settled into our tiny little suite at the Ronald McDonald house. I have a kitchen and I can make my own food. It's like a little home. A home without the rest of my family doesn't feel much like home, though.
Riker hasn't really improved. She's had a few moments where she smiled and played in the last two days but mostly she's cried. She's even having trouble putting herself to sleep lately. So, mostly she cries.
The doctors "humored me" again and did blood cultures on Riker. She had a temp consistently of just over 99 yesterday and that's high for her. The attending oncologist said she didn't want to send out cultures because there's a greater chance that the culture would be contaminated than to actually show if she had something going on. What a load of crap. Does that mean that all the cultures they draw are probably just contaminated?
Either way, there's nothing clinically wrong with Riker and they feel that maybe she's just sick of being in the hospital. (um... she doesn't know any different) Either way, there is nothing wrong with her that would make her need to stay at the hospital. We can work on whatever it is outpatient at the clinic.
I don't mean to be so discouraged right now. I should be elated that she's well enough to leave the hospital. So many kids aren't. Some never get to leave.
It's hard to keep telling myself that, though. It's lonely in this room with just my crying baby and me. I can't bring her anywhere.... so we're stuck in here, all alone. I miss my own house, Jon and Valentine. But now I don't even have a house to go to. I am so scared and frustrated and angry and sad.
I held it together almost all of the time at the hospital but at least when I lost it, someone was there for me or someone could be with Riker so I could go somewhere and have a break. Now it's just Riker and I... and I better hold it together because I'm all she's got.
day #54 of current hospital stay
We were discharged today. We're finally settled into our tiny little suite at the Ronald McDonald house. I have a kitchen and I can make my own food. It's like a little home. A home without the rest of my family doesn't feel much like home, though.
Riker hasn't really improved. She's had a few moments where she smiled and played in the last two days but mostly she's cried. She's even having trouble putting herself to sleep lately. So, mostly she cries.
The doctors "humored me" again and did blood cultures on Riker. She had a temp consistently of just over 99 yesterday and that's high for her. The attending oncologist said she didn't want to send out cultures because there's a greater chance that the culture would be contaminated than to actually show if she had something going on. What a load of crap. Does that mean that all the cultures they draw are probably just contaminated?
Either way, there's nothing clinically wrong with Riker and they feel that maybe she's just sick of being in the hospital. (um... she doesn't know any different) Either way, there is nothing wrong with her that would make her need to stay at the hospital. We can work on whatever it is outpatient at the clinic.
I don't mean to be so discouraged right now. I should be elated that she's well enough to leave the hospital. So many kids aren't. Some never get to leave.
It's hard to keep telling myself that, though. It's lonely in this room with just my crying baby and me. I can't bring her anywhere.... so we're stuck in here, all alone. I miss my own house, Jon and Valentine. But now I don't even have a house to go to. I am so scared and frustrated and angry and sad.
I held it together almost all of the time at the hospital but at least when I lost it, someone was there for me or someone could be with Riker so I could go somewhere and have a break. Now it's just Riker and I... and I better hold it together because I'm all she's got.
November 12 & 13, 2011 - Day 42 & 43
5 months, 1 week, 1 day since diagnosis
day #52 of current hospital stay
Riker's G-tube pain has resolved itself as it healed but she's still crying all the time. I'm tired and I'm frustrated. I'm scared. I'm starting to feel like maybe the cancer is back. It's irrational - none of the tests show it - but I have nothing rational to hold on to. I'm starting to feel like a crazy person. Why is she crying all the time?
I know that transplant takes a lot out of people. I know she's tired. I know food in her belly is probably making her feel kinda icky. I know she's probably teething. Maybe starting to feel some separation anxiety. Maybe it's a combination of a lot of things. She's always smiled through the worst of things. What's a little teething to a girl who's been through chemo?
Maybe I'm just being unrealistic. Her nurse today agreed with me, though. She felt like I shouldn't be going home either. But the doctors are ready for me to be discharged. They're humoring me at this point. Trying to give me more time to be comfortable. But the problem isn't that I'm scared to leave - the problem is that I don't know what to do with a baby who cries and sleeps all day. She's not a newborn. Maybe I need to treat her like one?
I feel lost and confused. I hope that I find answers soon.
day #52 of current hospital stay
Riker's G-tube pain has resolved itself as it healed but she's still crying all the time. I'm tired and I'm frustrated. I'm scared. I'm starting to feel like maybe the cancer is back. It's irrational - none of the tests show it - but I have nothing rational to hold on to. I'm starting to feel like a crazy person. Why is she crying all the time?
I know that transplant takes a lot out of people. I know she's tired. I know food in her belly is probably making her feel kinda icky. I know she's probably teething. Maybe starting to feel some separation anxiety. Maybe it's a combination of a lot of things. She's always smiled through the worst of things. What's a little teething to a girl who's been through chemo?
Maybe I'm just being unrealistic. Her nurse today agreed with me, though. She felt like I shouldn't be going home either. But the doctors are ready for me to be discharged. They're humoring me at this point. Trying to give me more time to be comfortable. But the problem isn't that I'm scared to leave - the problem is that I don't know what to do with a baby who cries and sleeps all day. She's not a newborn. Maybe I need to treat her like one?
I feel lost and confused. I hope that I find answers soon.
Friday, November 11, 2011
November 11, 2011 - Day 41
5 months, 6 days since diagnosis
day #50 of current hospital stay
Riker is STILL in pain. She woke up very pleasant but was inconsolable as soon as I touched her. The GI team is not concerned but did agree that she seems to be in a considerable amount of pain. They actually left the room for 5 minutes while Riker got a dose of IV morphine and calmed down so they could examine her and adjust her tube.
I decided I was not letting her be discharged today. She needs to be here where her pain can be appropriately managed. She's not just getting a little fussy when her meds are wearing off. She's getting down right hysterical. She is in a lot of pain.
I took the time to get more prepared for our move out of the hospital. Josh and I were able to pick up a few groceries and move a few things over. I'm taking the change of plans with stride. This is what it is like to have a sick child. I'd rather have her at 100% when we take her out of here. That way, I can observe subtle changes that could be concerning.
Mothers always know best. When I came back after dinner, she was talking to herself in her crib. She was very pleasant and smiled at me when she saw me. However, when I touched her she started to scream and it didn't get better from there. I called in the nurse and we agreed that her belly was swollen and that she is clearly in a lot of pain.
The doctor ordered an xray to look at the tube and her stomach. They were looking for air in or around the stomach. Thankfully, they didn't find anything terribly worrisome but the do see air in her intestines. They think that this is completely unrelated to her G-tube. After transplant and so much time without eating their bowels get a little slow and they have trouble moving things through. The morphine slows everything down, too, making it even worse. This could be adding to her pain.
For tonight, we'll be stopping her feeds and see what happens. Hopefully, she'll pass the gas soon on her own. If the pain lets up, we could still be discharged tomorrow but my guess is that they will put it off until Monday. Honestly, that's ok with me. These things are scarey even here in the hospital. Each day we are here is a day closer to the next milestone of day 100. When she's feeling better, then we'll get out of here.
day #50 of current hospital stay
Riker is STILL in pain. She woke up very pleasant but was inconsolable as soon as I touched her. The GI team is not concerned but did agree that she seems to be in a considerable amount of pain. They actually left the room for 5 minutes while Riker got a dose of IV morphine and calmed down so they could examine her and adjust her tube.
I decided I was not letting her be discharged today. She needs to be here where her pain can be appropriately managed. She's not just getting a little fussy when her meds are wearing off. She's getting down right hysterical. She is in a lot of pain.
I took the time to get more prepared for our move out of the hospital. Josh and I were able to pick up a few groceries and move a few things over. I'm taking the change of plans with stride. This is what it is like to have a sick child. I'd rather have her at 100% when we take her out of here. That way, I can observe subtle changes that could be concerning.
Mothers always know best. When I came back after dinner, she was talking to herself in her crib. She was very pleasant and smiled at me when she saw me. However, when I touched her she started to scream and it didn't get better from there. I called in the nurse and we agreed that her belly was swollen and that she is clearly in a lot of pain.
The doctor ordered an xray to look at the tube and her stomach. They were looking for air in or around the stomach. Thankfully, they didn't find anything terribly worrisome but the do see air in her intestines. They think that this is completely unrelated to her G-tube. After transplant and so much time without eating their bowels get a little slow and they have trouble moving things through. The morphine slows everything down, too, making it even worse. This could be adding to her pain.
For tonight, we'll be stopping her feeds and see what happens. Hopefully, she'll pass the gas soon on her own. If the pain lets up, we could still be discharged tomorrow but my guess is that they will put it off until Monday. Honestly, that's ok with me. These things are scarey even here in the hospital. Each day we are here is a day closer to the next milestone of day 100. When she's feeling better, then we'll get out of here.
November 10, 2011 - Day 40
5 months, 5 days since diagnosis
day #49 of current hospital stay
Riker's pain is not being managed well. When she is not sleeping, she is screaming. She doesn't get IV morphine until she's over the top upset. I want to see her getting pain meds before she is so hysterical. It's so difficult to see her in so much pain.
It's complicated because Riker is being weaned from morphine. They want her on the smallest dose possible. She's also not "narcotic naive." She metabolizes the morphine very quickly and she needs more of it than she used to.
When the night shift came on, the nurse was willing to give her IV morphine but warned me that she won't be able to get IV morphine at home for an ear infection. I told her that I don't think it's her ears that hurt at this point and if she needs IV morphine, she's not ready to go home! I sure hope she feels better tomorrow because I am not taking her home if she's still in this much pain!
Josh came today and we moved a few things into the Ronald McDonald suite. It's very small but there are two beds and a kitchen. We'll be able to make our own meals and it will feel a little more normal. It will be a tight fit and there won't be much privacy but it will be worth having the comfort of being so close to the hospital.
If all goes well, we'll be all moved in the suite tomorrow :)
day #49 of current hospital stay
Riker's pain is not being managed well. When she is not sleeping, she is screaming. She doesn't get IV morphine until she's over the top upset. I want to see her getting pain meds before she is so hysterical. It's so difficult to see her in so much pain.
It's complicated because Riker is being weaned from morphine. They want her on the smallest dose possible. She's also not "narcotic naive." She metabolizes the morphine very quickly and she needs more of it than she used to.
When the night shift came on, the nurse was willing to give her IV morphine but warned me that she won't be able to get IV morphine at home for an ear infection. I told her that I don't think it's her ears that hurt at this point and if she needs IV morphine, she's not ready to go home! I sure hope she feels better tomorrow because I am not taking her home if she's still in this much pain!
Josh came today and we moved a few things into the Ronald McDonald suite. It's very small but there are two beds and a kitchen. We'll be able to make our own meals and it will feel a little more normal. It will be a tight fit and there won't be much privacy but it will be worth having the comfort of being so close to the hospital.
If all goes well, we'll be all moved in the suite tomorrow :)
Wednesday, November 9, 2011
November 9, 2011 - Day 39
5 months, 4 days since diagnosis
day #48 of current hospital stay
Riker got her G-tube today. It took a lot longer than we thought but it's done. No more NG tube. No more tape on her face.
This morning she was very grumpy again. In fact, she was even worse than she has been. Thankfully, her primary nurse was on today. I insisted that Riker was not herself. I didn't want to delay the surgery but I was sure something was wrong. Riker was either sleeping or crying. She would cry less in my arms but she'd just sort of hang there and look around. She wasn't playing much... she wasn't talking or anything... Her cough seemed worse. Her nose was still running like crazy - maybe even worse.
While Riker's nurse was at rounds, I decided I couldn't wait. I paged out. I know that she was going to talk about Riker but I was just not comfortable with Riker's behavior and wanted someone to look at her immediately. It wasn't a lot of help. Maybe she's just teething? I just kept insisting that this didn't seem normal to me. If she was at home with me, a regular, happy baby, I'd take her in to see the doctor. Then it occured to me. If I was bringing her in for these symptoms at home, what would the doctor find? Runny nose, possible teething, irritability? Can we look in her ears?
The nurses said that wasn't something they could do but they'd ask the doctors. I urged them to have that happen sooner than later. Soon after, the skeptical Nurse Practitioner came in to check. You know the ear and eye device that hangs on doctor's office walls? Well, the one in Riker's room didn't even have a plug. They NEVER look in patients' ears. Wow.... So, low and behold, guess who has an ear infection? That explains a LOT and feels like an oddly normal baby moment. 3 days of "unexplained fussiness?" Hasn't almost every mother gone through that? Feeling bad when they finally make it to the doctor's office only to find out their child has a raging ear infection? Well, hopefully this means Riker will be back to normal by tomorrow night.
The G-tube procedure went off perfectly. The tube she has had in up until now is an NG-tube. This stands for Nasogastric Intubation. In other words, a tube that goes in through her nose and down into her stomach so that she can receive feeds through the tube. The G-tube is simply a Gastric feeding tube. It is a tube that goes directly into her stomach for long term feeding needs.
It's not expected that Riker will be consuming all the calories she needs by mouth anytime soon. She can consume as much as she wants by mouth and be supplemented by her tube for anything she's missing. When she finally does consume what she should, (or nearly what she should) we do not have to use the tube anymore. It can be removed as early as 6 months to a year from now.
The tube she has in right now is called a PEG. It is a basic tube coming from her belly that we will use to give her food and meds. In 4 months, when it heals, we'll put in a Mic Key. This will be more like a little plastic button and be significantly less obtrusive. The G-tube is not sterile and she'll be able to bathe or swim once it is healed. Until her central line is taken out, we won't be doing any of those things, but, we'll be able to do them once that's out.
So now, Riker is resting comfortably. She has morphine ordered for surgical and ear pain. She's on antibiotics to take care of the ear infection. Hopefully, she'll continue to rest comfortably through the night. In the morning, we'll start seeing if she can tolerate feeds again.
We are on target to be discharged on Friday. Things are all coming together now. I heard back from the Ronald McDonald House and we should have a suite ready for us tomorrow. I've asked Josh to come down and we should be able to get ready for Riker's discharge. I cannot believe that two days from now, we might be walking out of this hospital.
November 8, 2011 - Day 38
5 months, 3 days since diagnosis
day #47 of current hospital stay
What a day. Riker has been very grumpy today. We have a nurse we haven't had before and he doesn't know me or my baby. I hate having a new nurse when I've been in the same place for nearly 2 months. It's hard to convince them that my baby doesn't cry for no reason.
Of course, we did not have the G-tube put in today but we have it on the schedule for tomorrow at 10:45 am. We'll stop her feeds at 4am so that we're prepared for surgery whenever they are able to take us. I can't wait for that tube to be put in. She nearly pulled out her NG tube again today and actually succeeded at pulling it out most of the way. I HATE that tube.
After the tube mishap with the tube, I ended up having a falling out with her nurse. I like him - he's a gruff Scottish man who's clearly been doing this job for a long time. He's confident, efficient and knows what he's doing. He also does things differently from all the other young girls that work on the floor. Instead of ordering the normal x-ray to make sure Riker's tube wasn't in her chest, he pushed air in her tube and listened for it in her stomach. You mean she doesn't need an x-ray 3 times a day when she pulls that damn tube out? Rock on.
Afterwards, he was on his phone (it's the pager they carry with them at all times) and I said something to the nursing student he was working with. "You may not be taught this way when you train for a real job because he's kinda old school but he clearly knows what he is doing." He put his phone call on hold. "Excuse me, what did you say?" He was clearly not impressed and I had probably overstepped my boundaries. What an excellent teaching opportunity to show the student that parents don't always know what they're talking about? Anyway, I stumbled through an explanation of what I had said and blushed through my embarrassment at his obvious anger. He told me that wasn't correct and that what he was teaching was exactly how she'd be taught. (If that was the case, why have we had a dozen x-rays since we've been on this floor? That doesn't seem to be very cost effective when there is such an easy solution. There isn't an established protocol on this floor?) Then he very gruffly announced that he'd order an x-ray if that's what I wanted. I said "Obviously, I've offended you and I apologize." "You haven't offended me. If you want an x-ray, I'll order an x-ray." "Actually, I'd prefer you didn't order an x-ray." An awkward and unnecessary exchange to have with her nurse.
Then, to add to the stress, there's the problem of where to stay when all this is over. We're supposed to stay at the Ronald McDonald House upon discharge. I have so many questions. How big is it? What is in the suite? Who cleans it? How much time will we be given to move in? Does the family moving out move the same day we move in? Or is there a day between? I hate not being able to plan.
Since Riker is getting her G-tube tomorrow and we'll be discharged 2 days after that, I wanted my brother to come and help out with anything that might need doing prior to and during discharge. If we can't get into our suite early, at least we can get him a room at the RMH and we'll have a presence as a reminder that we'll be leaving the hospital soon.
So... I call today to make sure he can get a room tomorrow. You'd think that if you had a job at the RMH you might like people. You might want to work with people during the most difficult time in their lives and offer them some sort of comfort. Well, not at this house. Every time I call, I get the rudest people. They make me feel like I am asking them if I can stay at their house and like I am somehow putting them out. This is not how it is supposed to feel when I call.
Either way, there is no room at the house. None. Furthermore, they're not even sure if there will be room on Friday when we're discharged. I need to call the morning of. ugh. I really wanted Josh to come tomorrow... I've spent so much time here with no support and these last days prior to discharge are incredibly stressful. He came all the way from Phoenix to be with me and I could really use him now. The woman I spoke with actually had the nerve to tell me that there are families that need to stay there every week because they have clinic visits. I feel for them, lady, but how is that my problem? Why do I have to feel bad for asking if I stay? She could pretend to be sympathetic to my plight, too.
So, even though they say they have no room, I'll try again tomorrow. Maybe Josh can come at least a day before discharge. And hopefully we'll have a successful surgery tomorrow, too.
day #47 of current hospital stay
What a day. Riker has been very grumpy today. We have a nurse we haven't had before and he doesn't know me or my baby. I hate having a new nurse when I've been in the same place for nearly 2 months. It's hard to convince them that my baby doesn't cry for no reason.
Of course, we did not have the G-tube put in today but we have it on the schedule for tomorrow at 10:45 am. We'll stop her feeds at 4am so that we're prepared for surgery whenever they are able to take us. I can't wait for that tube to be put in. She nearly pulled out her NG tube again today and actually succeeded at pulling it out most of the way. I HATE that tube.
After the tube mishap with the tube, I ended up having a falling out with her nurse. I like him - he's a gruff Scottish man who's clearly been doing this job for a long time. He's confident, efficient and knows what he's doing. He also does things differently from all the other young girls that work on the floor. Instead of ordering the normal x-ray to make sure Riker's tube wasn't in her chest, he pushed air in her tube and listened for it in her stomach. You mean she doesn't need an x-ray 3 times a day when she pulls that damn tube out? Rock on.
Afterwards, he was on his phone (it's the pager they carry with them at all times) and I said something to the nursing student he was working with. "You may not be taught this way when you train for a real job because he's kinda old school but he clearly knows what he is doing." He put his phone call on hold. "Excuse me, what did you say?" He was clearly not impressed and I had probably overstepped my boundaries. What an excellent teaching opportunity to show the student that parents don't always know what they're talking about? Anyway, I stumbled through an explanation of what I had said and blushed through my embarrassment at his obvious anger. He told me that wasn't correct and that what he was teaching was exactly how she'd be taught. (If that was the case, why have we had a dozen x-rays since we've been on this floor? That doesn't seem to be very cost effective when there is such an easy solution. There isn't an established protocol on this floor?) Then he very gruffly announced that he'd order an x-ray if that's what I wanted. I said "Obviously, I've offended you and I apologize." "You haven't offended me. If you want an x-ray, I'll order an x-ray." "Actually, I'd prefer you didn't order an x-ray." An awkward and unnecessary exchange to have with her nurse.
Then, to add to the stress, there's the problem of where to stay when all this is over. We're supposed to stay at the Ronald McDonald House upon discharge. I have so many questions. How big is it? What is in the suite? Who cleans it? How much time will we be given to move in? Does the family moving out move the same day we move in? Or is there a day between? I hate not being able to plan.
Since Riker is getting her G-tube tomorrow and we'll be discharged 2 days after that, I wanted my brother to come and help out with anything that might need doing prior to and during discharge. If we can't get into our suite early, at least we can get him a room at the RMH and we'll have a presence as a reminder that we'll be leaving the hospital soon.
So... I call today to make sure he can get a room tomorrow. You'd think that if you had a job at the RMH you might like people. You might want to work with people during the most difficult time in their lives and offer them some sort of comfort. Well, not at this house. Every time I call, I get the rudest people. They make me feel like I am asking them if I can stay at their house and like I am somehow putting them out. This is not how it is supposed to feel when I call.
Either way, there is no room at the house. None. Furthermore, they're not even sure if there will be room on Friday when we're discharged. I need to call the morning of. ugh. I really wanted Josh to come tomorrow... I've spent so much time here with no support and these last days prior to discharge are incredibly stressful. He came all the way from Phoenix to be with me and I could really use him now. The woman I spoke with actually had the nerve to tell me that there are families that need to stay there every week because they have clinic visits. I feel for them, lady, but how is that my problem? Why do I have to feel bad for asking if I stay? She could pretend to be sympathetic to my plight, too.
So, even though they say they have no room, I'll try again tomorrow. Maybe Josh can come at least a day before discharge. And hopefully we'll have a successful surgery tomorrow, too.
November 6 & 7, 2011 - Day 36 & 37
5 months, 2 days since diagnosis
day #46 of current hospital stay
Riker doesn't have to be hooked up to her IV pole anymore :) We've converted all of her meds to oral and she's pretty much ready to go home. Unfortunately, we were not able to get her G-tube surgery scheduled for Monday like we originally thought. Booking an OR is not easy. It doesn't even sound like we'll get a slot tomorrow. Maybe Wednesday.
Riker's been a bit moodier than normal. I don't think it's morphine withdrawals - she doesn't have any other symptoms. She could be teething. For now, lots of cuddles and walks in the hall. We're having fun playing dress up and going for walks. As typical for Riker, she's stolen everyone's hearts. She enjoys saying hi to everyone and the halls are a nice change of scenery.
Speaking of "hi," Riker has learned to wave. She's amazed that she can do it and lies in bed waving at herself for long periods of time :) She doesn't realize when she should do it and won't do it on command but always does it after we stop trying to get her waving. I love the way babies learn to wave backwards - soo cute.
Her night CNA has been driving me nuts lately. The woman is very kind and sweet but boy is she clumsy with the babies. Every night she wakes Riker up taking vitals and changing her diaper every 4 hours. Riker does not need her diaper changed that much. This morning, she changed Riker's diaper at 6am. Um... yea... that woke her up on the wrong side of the bed. The worst part is that when she wakes up upset, she ends up throwing up her feed and sometimes her tube, too! ugh. I spoke with the attending physician and I'm no longer going to have the CNA change her diaper unless there is a compelling reason.
We're trying to get Riker's tube feedings where they should be but it has to be done slowly. She's not getting enough throughout the day, so, she is getting continuous breast milk throughout the night. It seems to be going well but I'm hoping to increase her intake during the day so that we can decrease and eventually stop the continuous at night. (At some point, hopefully she'll start taking in calories by mouth, too)
I have 2 months worth of breast milk saved up for her and she has about 4 months left until her 1st birthday. I'm starting to give her some formula each day to supplement my breast milk and get her through her first year. We started on Enfamil this weekend but I don't believe it went well. Perhaps that's why she's been so fussy. We're going to try Similac sensitive tomorrow and see if that works better. Either way, we need to find a solution that works for her - there simply is not enough breast milk to last her.
Although I am eager to be out of here, I'm grateful I have time to troubleshoot her feeds while I'm here. I'm glad that I am not doing it all on my own at home. I'll be home soon enough, either way :)
Sunday, November 6, 2011
November 5, 2011 - Day 35
5 months since diagnosis
day #44 of current hospital stay
Riker was diagnosed with AML exactly 5 months ago today. She has spent over half her life in a hospital. At one point it seemed like this was such an terribly long time. Now it doesn't seem like as much, at all. She's doing well. We'll be home soon. She has so much life ahead of her. We truly are blessed. The journey has been worth it. <3
Friday, November 4, 2011
November 4, 2011 - Day 34
4 months, 4 weeks, 2 days since diagnosis
day #43 of current hospital stay
Things continue to go well. We have decided to put in a G-tube. This will take the pressure off of all of us in regards to meds and eating. Riker will go home on a significant amount of meds and going at her with a dozen syringes a day is not helping her oral aversions. With a G-tube, we won't need to worry about her eating or getting the meds she needs to stay healthy. It will have to stay in for a year, but, I imagine she'll be fine after that and we can take it out. This, too, shall pass.
I have spoke to the feeding team and they think I'm doing exactly what I need to/should be as far as eating goes. She'll eat eventually - we're not pushing it. At this point, we're trying to make eating fun and are encouraging self feeding. I don't think I'll push the bottle on her, at all. As her coordination improves, there will be cups and solid food. She'll eat eventually.
I've started to troubleshoot the formula problem. Last time we tried to give her some, she couldn't keep it down. We've started fortifying again to see if she still has an averse reaction. So far it's going ok. If she continues to do well, I will start cutting her breast milk with formula. I haven't decided by how much - it depends on how much I have after doing an inventory.
If all goes accordingly, we should have the G-tube in on Monday. After a few days to heal and make sure all systems are go, we'll be discharged. OMG discharged? I wish I could say I was looking forward to it. It took about 5 weeks to get used to being here. Now I'm used to being here. Another change is not going to be easy. Being away from teams of medical staff is not going to be easy. We'll be close to the hospital, though. We'll be having frequent visits to clinic and all her vitals will be monitored closely. It will be ok. This is not the most difficult part of our journey.
As with everything, I just keep telling myself that it will be ok....repeating it over and over... It seems to have worked so far. Everything is ok :)
November 3, 2011 - Day 33
4 months, 4 weeks, 1 day since diagnosis
day #42 of current hospital stay
A friend lost her son yesterday. Tyler Burdick was only 2 1/2 years old and had his transplant only 15 days before Riker had hers. Today she went home for the first time in two months and she went home without one of her precious babies. She watched him lie in a bed for weeks fighting for his life, unable to hold him or take away his suffering. It could have been us. We could be watching our baby die. I cannot help but put myself in her shoes. I cannot help be grieve along with her.
But it is not us. Riker does better every day. Riker is tolerating her feeds and spends more time awake every day. We'll be discharged soon. I cannot feel guilty, but I do. Like a survivor in a horrific accident, it doesn't seem fair. Why do some babies make it through while others lives are cut so very short? A parent should never have to figure out how to go on without one of their children.
Stephanie and Daniel, Tyler's parents, are in my thoughts today. My heart goes out to them. I hope that, after enough time passes, they can find peace. I hope that they find the strength to go on and care for their remaining two boys. I hope that Dawson and Gabriel learn of their brother and his strength and can somehow help to keep his memory alive.
day #42 of current hospital stay
A friend lost her son yesterday. Tyler Burdick was only 2 1/2 years old and had his transplant only 15 days before Riker had hers. Today she went home for the first time in two months and she went home without one of her precious babies. She watched him lie in a bed for weeks fighting for his life, unable to hold him or take away his suffering. It could have been us. We could be watching our baby die. I cannot help but put myself in her shoes. I cannot help be grieve along with her.
But it is not us. Riker does better every day. Riker is tolerating her feeds and spends more time awake every day. We'll be discharged soon. I cannot feel guilty, but I do. Like a survivor in a horrific accident, it doesn't seem fair. Why do some babies make it through while others lives are cut so very short? A parent should never have to figure out how to go on without one of their children.
Stephanie and Daniel, Tyler's parents, are in my thoughts today. My heart goes out to them. I hope that, after enough time passes, they can find peace. I hope that they find the strength to go on and care for their remaining two boys. I hope that Dawson and Gabriel learn of their brother and his strength and can somehow help to keep his memory alive.
Wednesday, November 2, 2011
November 2, 2011 - Day 32
4 months, 4 weeks since diagnosis
day #41 of current hospital stay
Riker's not tolerating her feeds so well. No wonder she didn't want to eat! She's been throwing up and I can tell her belly just doesn't feel right. We raised as high as 16 ccs an hour and that's when she really doesn't do well. This is only 1/2 an ounce; so it's not much. The NG tube has stayed in, though. We stopped her feeds for a bit and we're working on the 16 ccs again. We'll keep weaning her up and hopefully working her gut until she can tolerate the calories she needs.
We have decided to put an G tube in. It will make the eating so much less stressful for her and I and it means we can leave the hospital sooner than later. The GI team is coming to consult tomorrow and we could have it put in as early as Monday. The recovery time for this procedure is minimal so, as soon as she starts tolerating her feeds, we will be discharged. Yikes!
We've weaned down the morphine to .5 every 6 hours and we're going to try to push that to every 8 hours. That's progress. We've decided to leave the Ativan alone - especially because she's still throwing up.
Also, the doctors do believe the bronchiolitis is improving. They also noted that an otherwise healthy baby can have a virus and cough hang on for weeks. They are not concerned which is comforting.
Overall, she looks good. She's been more fussy today than usual but I think that's because her tummy feels so crumby. I can still get smiles and laughs out of her so she can't be feeling too bad. If she continues to improve, we may be living in the Ronald McDonald house by the end of next week!
day #41 of current hospital stay
Riker's not tolerating her feeds so well. No wonder she didn't want to eat! She's been throwing up and I can tell her belly just doesn't feel right. We raised as high as 16 ccs an hour and that's when she really doesn't do well. This is only 1/2 an ounce; so it's not much. The NG tube has stayed in, though. We stopped her feeds for a bit and we're working on the 16 ccs again. We'll keep weaning her up and hopefully working her gut until she can tolerate the calories she needs.
We have decided to put an G tube in. It will make the eating so much less stressful for her and I and it means we can leave the hospital sooner than later. The GI team is coming to consult tomorrow and we could have it put in as early as Monday. The recovery time for this procedure is minimal so, as soon as she starts tolerating her feeds, we will be discharged. Yikes!
We've weaned down the morphine to .5 every 6 hours and we're going to try to push that to every 8 hours. That's progress. We've decided to leave the Ativan alone - especially because she's still throwing up.
Also, the doctors do believe the bronchiolitis is improving. They also noted that an otherwise healthy baby can have a virus and cough hang on for weeks. They are not concerned which is comforting.
Overall, she looks good. She's been more fussy today than usual but I think that's because her tummy feels so crumby. I can still get smiles and laughs out of her so she can't be feeling too bad. If she continues to improve, we may be living in the Ronald McDonald house by the end of next week!
October 31-November 1, 2011 - Day 30 & 31
4 months, 3 weeks, 6 days since diagnosis
day #40 of current hospital stay
How wonderful it was to be home. It was like I never left. I did all the things that I normally did and it was amazing... even down to bickering with my husband and my daughter! I didn't get home and into bed until well after 3am but I was absolutely ready for my birthday girl when she woke me up in the morning. It was awesome... she had no idea I was going to be there! Boy, was she surprised!
We had the housing inspection for the house that Jon had put a bid on. OMG - I love the house. There is minimal wrong with it and we're just waiting for the bank to accept the offer since it's a short sale. The process can take forever but we're really hoping that it gets sped along and that we can get into the house quickly. I'm very scared about the whole process, though. Two houses and two mortgages? We're going to seriously have to tighten our belts to make this work. This would be hard under normal circumstances but much more difficult considering Riker's care. It's also a lot of house. I have no idea how much it will cost to heat and what the electrical bill will look like. Alas, I can't worry about these things now. We'll make it through.
We got to have a small birthday party for Valentine and she was spoiled rotten (we're going to need to work on that when this is all over. less stuff, more love :). We got to go trick or treating and Valentine got to run around in the snow. The visit was short but it was perfect. It even wasn't too bad saying goodbyes.
It was the break I needed and I came back to the hospital feeling refreshed. The nurse says that Riker's bronchiolitis is not really improving which is disheartening but I am certain it will improve. They didn't even try to feed her in the 48 hours I was gone which was frustrating but I don't think she would have eaten anyway. They put in an NG tube right before I came back that she sneezed out in the first 10 minutes. The second was also put in before I got there. After an X-ray to make sure it was placed correctly, we have started breast milk feeds again. We're only starting with 8 ccs an hour which isn't even 1/3 of an ounce. It is a start, though.
The nurses said she had a good couple of days and I even got some pictures from Halloween. I think that the volunteers spoiled her and, of course, Riker loved every minute of it :) It's nice to know she was well cared for.
So I'm back. I'm here for the long haul again. This place has finally become familiar and it's not so bad to be back.
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