So from where I last left off I fell asleep thinking that Zoë would have the tube replaced to suction her stomach.
She did not have to have that done. After getting 3 suppositories she finally let go of all of her gases and evacuated enough to feel comfortable.
Yesterday morning she was up early and had a rather “normal” day. Eating, sleeping (a THREE hour nap! For both her and me!), and pooping.
The parade of doctors:
Urology: Dr. Lee clamped Zoë’s Left Nephrostomy Tube yesterday morning! She is now collecting only in her catheter. Thursday will be a BIG day for Zoë. She has a test (hopefully in the morning), to determine how well her kidneys are functioning. They will put dye into her kidneys via the nephrostomy tubes, and as long as the dye shows up in her bladder (or the catheter) she will have her nephrostomy tubes out!! Oh how I cannot wait for that test! Her catheter is soon to follow on Friday, unless Oncology sees a reason to keep it during her chemo treatments.
Surgery: Dr. Shamberger came by and loving peered at her while she was sleeping. He is very happy with her recovery, and was very pleased that she did not have the decompression tube replaced to suck her stomach. He felt as though her digestion issues would start to wane as she eats more.
Dr. Shamberger’s visit from today: He is still impressed with Zoë. He played with one of her toys, and thought it was exciting. *smiles* He asked about how well she is eating, and pooping. I told him that I never thought I would be so excited about poop. The doctor responded that surgeons have some bazaar interests, and what is not discussed in pleasant society is a topic of fascination for him. That flatulence can be an exciting topic. *smiles* He also remarked that it will be a Big Day for Zoë to get her nephrostomy tubes out, and he hopes that the dye test goes well. Dr. Hong, and Dr. Diller will be meeting (or discussing) with Dr. Shamberger, and Dr. Lee Zoë’s plan for chemo today. So we may know more about when that will happen soon.
Gosh do I just love Dr. Shamberger. I am so very happy that he is Zoë’s surgeon. If anyone in my family ever needed a surgery I would talk to him first.
Oncology: Dr. Hong informed me that her next round of chemo will be given to Zoë at 75%. This round is very strong, and he is worried that it could slow down Zoë’s healing process from the surgery. He does not want to risk her right ureter either. So he is being cautious. It is still more chemo than she got the last time (as she got it at 50% before). I anticipate that her blood levels will drop off quite a bit this time around.
Side Note: Speaking of blood. Did I mention that Zoë had 1 ½ times her blood volume replaced during surgery? So right now the majority of blood in her system is someone else’s (or many peoples). So thank you to all
of those blood donors! I even if you donate locally and not directly to Zoë you are AWESOME!
Pain Management: Dr.____ gosh I keep forgetting his name. Let’s just call him Dr. Feel Good. I told him that I requested to the nurses that they use the morphine as little as possible (because it slows the gut functions, and we don’t want her constipated again). Instead I asked the nurses to use the Valium and Ativan on a regular basis, and hopefully in the next few days work to get her off of the Valium, then the Ativan as well. Although I am not sure for how long, as she will probably be right back on the Ativan as soon as she gets the chemo.
Well Dr. Feel Good was impressed with my requests, and my perception of her pain, and told me my “plan” was exactly what he was going to enact. So look at that. I could be a Dr. Feel Good myself. *smiles*
Nutrition: Has yet to hound me. Although I am sure they will be trying to stuff food into Zoë as soon as she gets a feeding tube. It seems as though that may happen today or tomorrow. I already discussed my hopes for her
nutrition plan, and the woman from nutrition is on board with my thoughts. Operation Plump Zoë Up will have its ups and downs I am sure, but overall I hope that she has more room now in her abdomen to fit the food, causing less
distress.
Lactation: Why not get a visit from them as well. I will be asking if there is anything I can do to insure Zoë gets as much nutrition as she can get from me.
Social Work: I have not been harassed! It is a miracle. I have a feeling the Social Worker from the PICU (who is Awesome) spoke with the head of Social Work from Dana Farber to see what can be done to call off the Social Worker. I feel so bad that our personalities do not mesh well, but I am not in a position where I have enough time for pleasantries, and sugar coating, and the little sugar coating that I do have is wearing off. If I find I need help with anything I will go up and speak with the Social Worker from the PICU again, and go from there.
Spiritual Guidance: I don’t think that I have mentioned much about the Chaplain’s here at CHB. For most of you, you may know that my religious background was Baptist, but over many, many years I have evolved and explored, and still evolving (faster now probably than ever before). I was first contacted by Reverend Mary who was wonderful at asking simple non-intrusive questions, and shortly after introduced me to Rabbi Susan who is amazing. (Period)
I have been engaged in many engaging conversations with Rabbi Susan, and I hope one of these days to get the chance to meditate with her (as meditation is one of her practices).
Yesterday our conversation wandered all over the place as it tends to, but my favorite part of the conversation was discussing how important it is to keep your mind wide open. How it is better to be like a child who is curious and asks questions, and who has the ability to absorb new ideas, than to be steadfast and know everything. I am curious by nature, I am constantly asking questions, and trying to know more. Mostly because I know I don’t know everything. I am afraid of the person who says they know everything about something. I once ended a date with a guy before the date really started because he told me he knew, “everything there is to know about Photoshop”. I was immediately turned off. How can you know everything there is to know? I rather be with the person who says they know a lot, but are learning more every day. (And hey look at that, I am. *smiles*)
The idea of finality is frightening to me. Once you do know everything…well then what? I would be completely board if I knew everything.
Speaking of not knowing everything. Here is a question I asked yesterday. What is creatinine? Zoë has had several tests to check her creatinine levels, and I was just curious as to what it is. Zoë’s nurse of the day was stumped. She remarked about how she knows if a level is too high, or too low, but not exactly what it was.
So I looked it up:
Creatinine (not to be confused with creatine) is a break-down product of creatine phosphate in muscle, and is usually produced at a fairly constant rate by the body (depending on muscle mass). Creatinine is chiefly filtered out of the blood by the kidneys. If the filtering of the kidney is deficient, creatinine blood levels rise. Therefore, creatinine levels in blood and urine may be used to calculate the creatinine clearance (CrCl), which reflects the glomerular filtration rate.
Or in simple terms: It is a way of knowing if the kidneys are filtering properly.
Which now makes total sense as to why these tests are being done on Zoë with all of her kidney related stuff going
on.
Ah, yet again I am reminded just how much I love biology.
Well I started writing this post sometime early this morning, and Zoë is just now sleeping. We are waiting for an audiologist to arrive to check her hearing. (Some chemo drugs can affect hearing so we check her before and after some treatments). They do these tests while she is sleeping. So ssssshhhhhhhhh…… I hope she gets here soon!
Our day has been quite, and I hope for an equally as quiet night.
This post is brought to you by the power of questions. The more you ask, the
more you know.
Love and Hugs!
She did not have to have that done. After getting 3 suppositories she finally let go of all of her gases and evacuated enough to feel comfortable.
Yesterday morning she was up early and had a rather “normal” day. Eating, sleeping (a THREE hour nap! For both her and me!), and pooping.
The parade of doctors:
Urology: Dr. Lee clamped Zoë’s Left Nephrostomy Tube yesterday morning! She is now collecting only in her catheter. Thursday will be a BIG day for Zoë. She has a test (hopefully in the morning), to determine how well her kidneys are functioning. They will put dye into her kidneys via the nephrostomy tubes, and as long as the dye shows up in her bladder (or the catheter) she will have her nephrostomy tubes out!! Oh how I cannot wait for that test! Her catheter is soon to follow on Friday, unless Oncology sees a reason to keep it during her chemo treatments.
Surgery: Dr. Shamberger came by and loving peered at her while she was sleeping. He is very happy with her recovery, and was very pleased that she did not have the decompression tube replaced to suck her stomach. He felt as though her digestion issues would start to wane as she eats more.
Dr. Shamberger’s visit from today: He is still impressed with Zoë. He played with one of her toys, and thought it was exciting. *smiles* He asked about how well she is eating, and pooping. I told him that I never thought I would be so excited about poop. The doctor responded that surgeons have some bazaar interests, and what is not discussed in pleasant society is a topic of fascination for him. That flatulence can be an exciting topic. *smiles* He also remarked that it will be a Big Day for Zoë to get her nephrostomy tubes out, and he hopes that the dye test goes well. Dr. Hong, and Dr. Diller will be meeting (or discussing) with Dr. Shamberger, and Dr. Lee Zoë’s plan for chemo today. So we may know more about when that will happen soon.
Gosh do I just love Dr. Shamberger. I am so very happy that he is Zoë’s surgeon. If anyone in my family ever needed a surgery I would talk to him first.
Oncology: Dr. Hong informed me that her next round of chemo will be given to Zoë at 75%. This round is very strong, and he is worried that it could slow down Zoë’s healing process from the surgery. He does not want to risk her right ureter either. So he is being cautious. It is still more chemo than she got the last time (as she got it at 50% before). I anticipate that her blood levels will drop off quite a bit this time around.
Side Note: Speaking of blood. Did I mention that Zoë had 1 ½ times her blood volume replaced during surgery? So right now the majority of blood in her system is someone else’s (or many peoples). So thank you to all
of those blood donors! I even if you donate locally and not directly to Zoë you are AWESOME!
Pain Management: Dr.____ gosh I keep forgetting his name. Let’s just call him Dr. Feel Good. I told him that I requested to the nurses that they use the morphine as little as possible (because it slows the gut functions, and we don’t want her constipated again). Instead I asked the nurses to use the Valium and Ativan on a regular basis, and hopefully in the next few days work to get her off of the Valium, then the Ativan as well. Although I am not sure for how long, as she will probably be right back on the Ativan as soon as she gets the chemo.
Well Dr. Feel Good was impressed with my requests, and my perception of her pain, and told me my “plan” was exactly what he was going to enact. So look at that. I could be a Dr. Feel Good myself. *smiles*
Nutrition: Has yet to hound me. Although I am sure they will be trying to stuff food into Zoë as soon as she gets a feeding tube. It seems as though that may happen today or tomorrow. I already discussed my hopes for her
nutrition plan, and the woman from nutrition is on board with my thoughts. Operation Plump Zoë Up will have its ups and downs I am sure, but overall I hope that she has more room now in her abdomen to fit the food, causing less
distress.
Lactation: Why not get a visit from them as well. I will be asking if there is anything I can do to insure Zoë gets as much nutrition as she can get from me.
Social Work: I have not been harassed! It is a miracle. I have a feeling the Social Worker from the PICU (who is Awesome) spoke with the head of Social Work from Dana Farber to see what can be done to call off the Social Worker. I feel so bad that our personalities do not mesh well, but I am not in a position where I have enough time for pleasantries, and sugar coating, and the little sugar coating that I do have is wearing off. If I find I need help with anything I will go up and speak with the Social Worker from the PICU again, and go from there.
Spiritual Guidance: I don’t think that I have mentioned much about the Chaplain’s here at CHB. For most of you, you may know that my religious background was Baptist, but over many, many years I have evolved and explored, and still evolving (faster now probably than ever before). I was first contacted by Reverend Mary who was wonderful at asking simple non-intrusive questions, and shortly after introduced me to Rabbi Susan who is amazing. (Period)
I have been engaged in many engaging conversations with Rabbi Susan, and I hope one of these days to get the chance to meditate with her (as meditation is one of her practices).
Yesterday our conversation wandered all over the place as it tends to, but my favorite part of the conversation was discussing how important it is to keep your mind wide open. How it is better to be like a child who is curious and asks questions, and who has the ability to absorb new ideas, than to be steadfast and know everything. I am curious by nature, I am constantly asking questions, and trying to know more. Mostly because I know I don’t know everything. I am afraid of the person who says they know everything about something. I once ended a date with a guy before the date really started because he told me he knew, “everything there is to know about Photoshop”. I was immediately turned off. How can you know everything there is to know? I rather be with the person who says they know a lot, but are learning more every day. (And hey look at that, I am. *smiles*)
The idea of finality is frightening to me. Once you do know everything…well then what? I would be completely board if I knew everything.
Speaking of not knowing everything. Here is a question I asked yesterday. What is creatinine? Zoë has had several tests to check her creatinine levels, and I was just curious as to what it is. Zoë’s nurse of the day was stumped. She remarked about how she knows if a level is too high, or too low, but not exactly what it was.
So I looked it up:
Creatinine (not to be confused with creatine) is a break-down product of creatine phosphate in muscle, and is usually produced at a fairly constant rate by the body (depending on muscle mass). Creatinine is chiefly filtered out of the blood by the kidneys. If the filtering of the kidney is deficient, creatinine blood levels rise. Therefore, creatinine levels in blood and urine may be used to calculate the creatinine clearance (CrCl), which reflects the glomerular filtration rate.
Or in simple terms: It is a way of knowing if the kidneys are filtering properly.
Which now makes total sense as to why these tests are being done on Zoë with all of her kidney related stuff going
on.
Ah, yet again I am reminded just how much I love biology.
Well I started writing this post sometime early this morning, and Zoë is just now sleeping. We are waiting for an audiologist to arrive to check her hearing. (Some chemo drugs can affect hearing so we check her before and after some treatments). They do these tests while she is sleeping. So ssssshhhhhhhhh…… I hope she gets here soon!
Our day has been quite, and I hope for an equally as quiet night.
This post is brought to you by the power of questions. The more you ask, the
more you know.
Love and Hugs!
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