It has been almost a full week since we left the hospital and began life anew at home. We walked out of the doors at 5pm on Monday, February 7th.
Life has been hectic. Alan and I give Clara a total of 4 IV meds at home. One is given once a day and the other is given every 8 hours. This means that I am up at 5 am to give Clara the first of three which is due at 6am but must be taken out of the refrigerator an hour ahead of time, and Alan is up until a little after midnight administering the last. We have a total of 7 meds that we give her through her NG. They are given 1-3 times a day and one requires that she have an empty stomach and thus can't be given with other meds or within 1 hour of a feeding. So, while we are struggling to make sure she gets enough to eat through her NG everyday, she has consistent morning nausea that we can't seem to prevent - even if we don't feed her overnight through about 10am and even with anti-nausea meds. And when you have to stop feedings during the day to make sure she gets the one med on an empty stomach, we are having a hard time making sure she is staying hydrated, much less getting enough calories. Plus, for the next two weeks, we will be going into the day hospital to get her antifungal that has to be given at the hospital.
So, I'm pretty tired. Despite my graph paper charting to help me schedule when I am going to do what, I am constantly concerned that I am behind or missed a med. Plus, I'm trying to get the house in order. It is actually something I am really really enjoying. It is based on flylady.net. It is a fabulous system for keeping your house clean and in order and to a level that I never thought I could accomplish. She reminds you to do things in 2, 5, and 15 minute lengths and not to try to "catch up" but start today and move forward. In the chaos that I am living in it is so nice to be able to ALSO keep my house clean. And not just nice, necessary. Clara requires a very very clean house and I am able to actually do it! Problem? I'm pooped! But loving it.
It means I don't have time for phone calls with my favorite people, yet. It means, I don't get a lot of breathing time, yet. It means, I am thoroughly exhausted at the end of the day and hardly took time to have my glass of wine. BUT, I'm close. Very close.
Clara has slept in her own crib in her own room the past 3 out of 4 nights (last night was weird and she was having some odd discomfort that I could never pinpoint). She is falling asleep on her own after varying periods of fussing (0-45 minutes). She is incredible. She is finally getting some of the much much much needed rest required as a result of her hospitalizations, procedures, chemo, blah blah blah. She is having a hard time napping, but I think it is just because she is still adjusting to falling asleep on her own during the day. She does like a dark room and the curtains I bought her aren't blackout.
I promise this is the first of several big updates regarding what has happened, is going on, is expected, needs to be announced, etc. We are just so very busy. I have been taking pictures and promise to post them as well. Not sure why this post is first other than the fact that the chaos of the day is forefront in my mind.
Clara is doing great. Her skin has a different glow - not quite so dehydrated. And her eyes are more clear and the whites are whiter. She has begun the separation anxiety phase and doesn't like for me to put her down, much less walk away, or leave the room. In the hospital, we were always together and I was always holding her. Still, she is learning to pull on things to stand up and enjoys holding onto the edge of furniture to stand. We still have not gotten good at consistently putting her in the highchair each day to expose her to solid foods. It is necessary as she won't learn to eat if we don't teach her. And I feel guilty that I am too busy to teach her to eat. It will come soon.
I must stop here. There is so much more to say and I promise we will say it. I just wanted to get in as much as I could while I could.
Sunday, February 13, 2011
Friday, February 11, 2011
Day +30: doing well!
It has been a wonderful week (really only 4 days) at home. We don't have to go into the hospital this weekend for Clara's antifungal meds. So, as I lie on the couch, as Clara sleeps soundly in her crib in her own room, as I think about how wonderful it is now that we have made it to Day 30 without incident, I just wanted to let you all know we are happy, healthy and thriving in our new environment and routines.
I promise we will keep you updated as much as possible. The transition has been smooth, but full for preparation, administration, or charting...until we all crash and start over again.
Looking forward to tonight and tomorrow.
Monday, February 7, 2011
Friday, February 4, 2011
Day +23: MRI/CT
Clara is in the MRI/CT scanners. We should hear from recovery within the hour so that we can take her back to her room. She now has to wear a very special mask when she is out of her room but still in the hospital. So, when we took her down to the Pre-op area, she had to actually wear it for a while. She was a champ! It fit kind of tight and squished under her eyes. I was so impressed with her! She kept it on for almost 30 minutes!!! If I had an extra pair of hands I would have taken a picture. We will get one as we leave the hospital next
week.
Alan and I went home for the first hour and a half of her scans and finished setting up her room. She has new curtains, no rug, new sheets, and vinyl letters in the wall above her crib. I'll save the wording as a surprise. I'll get a picture of it tomorrow in the daylight. Be sure you have a tissue ready.
That's all for now. We are getting excited! Looking forward to hearing what the Infectious Disease department says about her aspergillus!
week.
Alan and I went home for the first hour and a half of her scans and finished setting up her room. She has new curtains, no rug, new sheets, and vinyl letters in the wall above her crib. I'll save the wording as a surprise. I'll get a picture of it tomorrow in the daylight. Be sure you have a tissue ready.
That's all for now. We are getting excited! Looking forward to hearing what the Infectious Disease department says about her aspergillus!
Thursday, February 3, 2011
Day +22
Sorry for the lack of posts lately folks.
We are getting really fed up with this whole process. I've been challenging the doctors quite a bit lately as they are making certain decisions. And we had lots of moments where we thought we might be going home sometime this week. As is stands now, we are going home on Monday.
Clara has thrown up about 10 times today. We are pretty sure her NG was in the wrong place as she wasn't throwing up any food - just watery, bile-like stuff with a few strands or flakes of brown. I was pretty sure she had an NJ again (the tube ending up in her intestines instead of her stomach). She has been tolerating her feeds really well (meaning we have been bumping up the rate of food she gets per hour), but the lack of breastmilk or formula in her vomits concerned me that the tube was ending in the wrong place and irritating her stomach. We got a chest x-ray to confirm placement and, while it wasn't completely obvious, we pulled the tube back by 5cm. She perked up quite a bit after that and was smiling, babbling, and "walking."
Alan and I are now switching who is at the hospital every night. We started out doing 3 night (that only lasted one set), then have been doing every 2 nights. But, it has gotten really really difficult to do this anymore. I do not do very well in an environment where I am not in control...of everything. I need to be kept up to speed on decisions and the thought process that went into making those decisions. Often, I like to be the one making the decisions or at least have had my opinion heavily considered during a decision making moment. Lately, everyone has been telling me I am going to fast, need to slow down, blah blah blah when it comes to Clara's feedings. But goodness gracious, I'm the one in the room with her and know if I feed her too much. I am indeed pushing to see how much she can take. I am indeed feeding her faster than they might normally go. I am indeed in a hurry to get her digesting the full amount of her daily calories via NG so we can go off the IV form of food. HOWEVER, I am also her mother. I don't want her to throw up. If I thought the rate at which I was feeding her was too high, I'd back off. In fact, for months they have been the ones pushing me to give her more and I knew she couldn't handle it.
Bah!
Can you hear the frustration? Can you hear the irritability? It doesn't go away. We are so tired of this whole thing, it is really really hard to be nice. It is hard to hear them say, "She looks great!" when I know she is feeling bloated and they don't want to give her lasiks. It is hard to know this is almost over. BUT, when we get home, we still have to adjust to the new outpatient chaos and schedule. Because, it isn't really over.
Tomorrow, Clara is having an MRI and CT at 2:30pm. We will be looking to see if the antifungals have officially killed back the aspergillus. If there is still nothing in her brain and lungs, and if they can't see anymore on her kidney, then we will be continuing the antifungal treatments through at least day 30 (next Friday). If we don't have to do those IV meds anymore than things will become very much easier a lot more quickly. It will just be teaching Clara to eat. Managing a few oral meds. And clinic appointments on Mondays and Thursdays. I can handle that.
So, again sorry for the lack of updates. We aren't the most chipper of people lately and the goings on have been mostly details medical stuff that is kinda boring or takes a while to describe/explain.
A few fun things are that Clara is waving hello to herself in the little vanity mirror over the sink in our room. She will crane her neck to try to see into the mirror if we are close to it but not in view. As soon as she sees herself, she grins. And when I say, "Hi!" she starts pumping that right arm up and down with a fisted hand. She is also getting more adventurous and will reach for things well out of reach and end up having to do some crawling type motions. She is getting really strong and enjoying standing while holding on to my hand with one hand although usually two. She is also getting better at walking. I have my hands under her armpits and lift just the tiniest bit and she will pick that foot up right away and place it in front of her. She gets a kick out of moving forward.
That's all for now. Will try to keep you updated as we make the official transition to home life!
We are getting really fed up with this whole process. I've been challenging the doctors quite a bit lately as they are making certain decisions. And we had lots of moments where we thought we might be going home sometime this week. As is stands now, we are going home on Monday.
Clara has thrown up about 10 times today. We are pretty sure her NG was in the wrong place as she wasn't throwing up any food - just watery, bile-like stuff with a few strands or flakes of brown. I was pretty sure she had an NJ again (the tube ending up in her intestines instead of her stomach). She has been tolerating her feeds really well (meaning we have been bumping up the rate of food she gets per hour), but the lack of breastmilk or formula in her vomits concerned me that the tube was ending in the wrong place and irritating her stomach. We got a chest x-ray to confirm placement and, while it wasn't completely obvious, we pulled the tube back by 5cm. She perked up quite a bit after that and was smiling, babbling, and "walking."
Alan and I are now switching who is at the hospital every night. We started out doing 3 night (that only lasted one set), then have been doing every 2 nights. But, it has gotten really really difficult to do this anymore. I do not do very well in an environment where I am not in control...of everything. I need to be kept up to speed on decisions and the thought process that went into making those decisions. Often, I like to be the one making the decisions or at least have had my opinion heavily considered during a decision making moment. Lately, everyone has been telling me I am going to fast, need to slow down, blah blah blah when it comes to Clara's feedings. But goodness gracious, I'm the one in the room with her and know if I feed her too much. I am indeed pushing to see how much she can take. I am indeed feeding her faster than they might normally go. I am indeed in a hurry to get her digesting the full amount of her daily calories via NG so we can go off the IV form of food. HOWEVER, I am also her mother. I don't want her to throw up. If I thought the rate at which I was feeding her was too high, I'd back off. In fact, for months they have been the ones pushing me to give her more and I knew she couldn't handle it.
Bah!
Can you hear the frustration? Can you hear the irritability? It doesn't go away. We are so tired of this whole thing, it is really really hard to be nice. It is hard to hear them say, "She looks great!" when I know she is feeling bloated and they don't want to give her lasiks. It is hard to know this is almost over. BUT, when we get home, we still have to adjust to the new outpatient chaos and schedule. Because, it isn't really over.
Tomorrow, Clara is having an MRI and CT at 2:30pm. We will be looking to see if the antifungals have officially killed back the aspergillus. If there is still nothing in her brain and lungs, and if they can't see anymore on her kidney, then we will be continuing the antifungal treatments through at least day 30 (next Friday). If we don't have to do those IV meds anymore than things will become very much easier a lot more quickly. It will just be teaching Clara to eat. Managing a few oral meds. And clinic appointments on Mondays and Thursdays. I can handle that.
So, again sorry for the lack of updates. We aren't the most chipper of people lately and the goings on have been mostly details medical stuff that is kinda boring or takes a while to describe/explain.
A few fun things are that Clara is waving hello to herself in the little vanity mirror over the sink in our room. She will crane her neck to try to see into the mirror if we are close to it but not in view. As soon as she sees herself, she grins. And when I say, "Hi!" she starts pumping that right arm up and down with a fisted hand. She is also getting more adventurous and will reach for things well out of reach and end up having to do some crawling type motions. She is getting really strong and enjoying standing while holding on to my hand with one hand although usually two. She is also getting better at walking. I have my hands under her armpits and lift just the tiniest bit and she will pick that foot up right away and place it in front of her. She gets a kick out of moving forward.
That's all for now. Will try to keep you updated as we make the official transition to home life!
Sunday, January 30, 2011
Day +18
Well, folks. We aren't going home tomorrow.
Honestly we had the feeling that it wasn't going to happen. The best scenario now is Wednesday.
Clara's ANC has been up hovering in the 500 range for the past few days. She hit 700 but then dropped down again and was again at 700 today. She also had a fever a few days ago which caused her to need to be back on antibiotics again. Fortunately nothing has grown from her blood cultures. I actually think that the fevers coincide with flair ups of her graft versus host disease. She gets red splotches on her face, back, and chest. They are significantly hotter than the rest of her body to the touch.
Each day they have been scaling back medications that she is getting. To go home we need a majority of her meds to be oral instead of IV (I am not really sure why they need this). They prefer to transition one med at a time to see if she has any reactivity to the oral version of the med so it takes time. We are also scaling back her TPN (the IV feeding source) to a 12 hour IV infusion. This requires a slow transition (I think so that it won't shock her liver/kidneys).
The goal with the TPN transition would be to give her full nutrition at night while giving us the chance to teach her to eat during the days. We could take the alternate route of the NG tube but that makes it harder to swallow and we want to give her the best scenario for learning to eat. Hopefully we can quickly transition to a baby that eats by herself without the TPN (the TPN does cause some issues with organs - we aren't made to get our nutrition by IV).
We are also being delayed because she has procedures that need to be done before we leave. Those procedures are an MRI/CT to observe the status of her fungal infection on her kidney (and anywhere else it may have spread) and to take a bone marrow aspirate to test her new bone marrow. Ideally the new bone marrow is 100% donor marrow but sometimes the host marrow still represents a significant fraction of the remaining marrow. This will help determine the chance of a relapse of the leukemia.
Clara has been mostly tired and irritable (as have her parents). She has had the worst diaper rash immaginable lately that we are treating with a variety of ointments. It has improved over the past few days but has to be very painful for her. It is also obvious that she is bored in her room and would love to be able to move around. She really perks up when we have visitors. I'm sure that she is as ready as we are to finally be home and hopefully stay there!
Honestly we had the feeling that it wasn't going to happen. The best scenario now is Wednesday.
Clara's ANC has been up hovering in the 500 range for the past few days. She hit 700 but then dropped down again and was again at 700 today. She also had a fever a few days ago which caused her to need to be back on antibiotics again. Fortunately nothing has grown from her blood cultures. I actually think that the fevers coincide with flair ups of her graft versus host disease. She gets red splotches on her face, back, and chest. They are significantly hotter than the rest of her body to the touch.
Each day they have been scaling back medications that she is getting. To go home we need a majority of her meds to be oral instead of IV (I am not really sure why they need this). They prefer to transition one med at a time to see if she has any reactivity to the oral version of the med so it takes time. We are also scaling back her TPN (the IV feeding source) to a 12 hour IV infusion. This requires a slow transition (I think so that it won't shock her liver/kidneys).
The goal with the TPN transition would be to give her full nutrition at night while giving us the chance to teach her to eat during the days. We could take the alternate route of the NG tube but that makes it harder to swallow and we want to give her the best scenario for learning to eat. Hopefully we can quickly transition to a baby that eats by herself without the TPN (the TPN does cause some issues with organs - we aren't made to get our nutrition by IV).
We are also being delayed because she has procedures that need to be done before we leave. Those procedures are an MRI/CT to observe the status of her fungal infection on her kidney (and anywhere else it may have spread) and to take a bone marrow aspirate to test her new bone marrow. Ideally the new bone marrow is 100% donor marrow but sometimes the host marrow still represents a significant fraction of the remaining marrow. This will help determine the chance of a relapse of the leukemia.
Clara has been mostly tired and irritable (as have her parents). She has had the worst diaper rash immaginable lately that we are treating with a variety of ointments. It has improved over the past few days but has to be very painful for her. It is also obvious that she is bored in her room and would love to be able to move around. She really perks up when we have visitors. I'm sure that she is as ready as we are to finally be home and hopefully stay there!
Thursday, January 27, 2011
Day +14: ANC = 500!
Clara's labs showed an ANC of 500 this morning! The doctors say we
could be taking her home as early as Monday!!!!
could be taking her home as early as Monday!!!!
I'm headed to bed and quite tired just thinking about all that must be
done before we bring her home. However, I had to let you all know.
Additionally, she is less cranky since the lasix really began working
last night. She has become much less bloated and feels much better.
She continues to have a healthy amount of GVH show up on her skin with
minor red splotches here and there that make her a bit uncomfortable.
She is still loosing her hair-although not to worry as it consistently
finds it's way to our mouths.
There is much to talk through with the staff, much to prepare for at
home, and much to accomplish at the hospital over the next very few
days. Please forgive me for posts lacking in detail or frequency in
the coming days although I will make my best effort to share the
coming events with you all.
It really is shocking that we are here. It was just a few days ago
that I feared so greatly for her life and now things seem so suddenly
perfect. I don't mean to be blind to the upcoming potential
challenges, but they so grately pale to what we have been through that
I hardly see them as worth even mentioning or contemplating.
I can't wait to bring my baby home. With all the bells and whistles
and song and noise I can muster.
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