Elizabeth's admission and testing last week went well. She was in the OR longer than
expected and had a bit of trauma to her colon due to the procedure of
catheter placement being more difficult than usual. this caused extra bleeding and
pain, but she is fine. once again, she showed us all that
is more than amazing in her strength to get through painful,
horrible things. She did it though and now we can put the
awful testing away until the next time.
We were happy to be able to get an unexpected discharge so that
we could be home for the weekend. We headed back to Los Angeles
yesterday in preparation for her scheduled colon surgery today....
but tonight we are home. She is too sick with a sinus infection (and cough)
and the surgical team felt it too unsafe to put her through the surgery today.
It is hard to be mentally and emotionally prepared for such a big surgery and then
have a change in plans, but there's no way she should have gone to the OR today.
She's on a heavy course of antibiotics and, because she can't seem to stay well for
very long, she will have surgery as soon as this course of antibiotics is finished in order
to head into surgery her best and not risk being sick post-op.
Elizabeth handled the frustration of postponing it better than I did. She did voice to all
that she will now not have surgery before her birthday; she's spent birthdays and holidays
in the hospital and if she has a say -which she does- she will not be behind the glass on
July 16th. Surgery is scheduled for the 17th.
The bone marrow biopsy will be done at that time as well.
We just have to trust that His timing is best and be patient.
I'll update more soon.
Wednesday, July 3, 2013
Thursday, June 27, 2013
Sunday, June 23, 2013
Update
I have not written in months..... too much to say with too little motivation to say it.
If you have checked in, in the hopes of praying for my Elizabeth - thank you.
Elizabeth has been in and out of the hospital since I last wrote. She now eats noting by mouth and is on tube feeds 22 hours a day.
Tuesday she will be admitted for a few weeks for another bone marrow biopsy, testing and then major colon surgery on July 2nd.
And still, she smiles.
If you have checked in, in the hopes of praying for my Elizabeth - thank you.
Elizabeth has been in and out of the hospital since I last wrote. She now eats noting by mouth and is on tube feeds 22 hours a day.
Tuesday she will be admitted for a few weeks for another bone marrow biopsy, testing and then major colon surgery on July 2nd.
And still, she smiles.
Thursday, February 14, 2013
Update
Last night I sat shaking uncontrollably. The mind-body connection is amazing and I guess my adrenaline was rushing as I sat thinking of the upcoming week and my body responded.
On Monday, our Liz will be admitted to Children's Hospital Los Angeles for a while. We were told days, but we've learned to pack for weeks. On Tuesday she will head to the OR for a procedure to place a PICC line again. Originally, we planned on placing the PICC so that I had IV access at home to provide IV hydration to her. This week plans changed, and the new plan is to have Liz go on gut rest for a while, and receive TPN (IV nutrition) for awhile.
While we are at CHLA, the enteral nutrition team will also consult and try and figure out why her zinc keeps dropping so low.
The geneticist will have labs drawn for the two syndromes he asked to test her for almost three weeks ago, but I wanted him to justify his reasoning. After hearing Hem/Onc's impression of her last bone marrow slides and after the geneticists argument provided in chart notes and conversation to Liz's pediatrician, we have decided to agree to the labs. I have hesitated sharing the names of the diseases with others, as they are both terminal and that is a dramatic thought, but prayer is powerful and so I share now and ask for prayer that she will test negative for both Pearson's Syndrome and MNGIE (both mitochondrial diseases). I do not think she has either.
Hopefully Surgery will consult as well during our stay; it has been decided that Liz needs the cecostomy (surgery to provide colon-access from the outside so that we can do daily flushes) and given her complicated case and so much scarring from all of her previous surgeries, it will be important to have surgeons who are comfortable working on her.
Surgery will not take place during this admit. She must first have the colon manomerty studies repeated and a surgical team in place.We plan to come home and return in about a month for the Cecostomy.
Please pray for Liz's tolerance and patience. Being in the hospital is rough. Last year she needed the PICC line moved to her other arm a month after placing the first, so she is hesitant and dreading having the line in. Gut rest will be difficult as well, as she won't be able to eat by mouth for weeks-month.
We all feel the effects of a hospitalization as Liz and I are away from home. Not being at our local hospital is especially hard because I won't be able to see Jackson or Kate while we are in LA. Walter has been on vacation this week and getting away from work will be difficult since he has just had this time off.
We are praying we are making the right choices for our girl-
Thank you for continuing to pray and encourage us.
Below is an entry I wrote two weeks ago but didn't post. I'll attach to this one for those who have asked the same questions.....
It has been a few weeks since I last posted. I decided to write tonight to address some questions I have been asked or heard others say they have been asked.
What is wrong with Elizabeth-
Hmm, good question and I wish I knew the answer. If you are looking for an overall diagnosis as an answer, there isn't one yet. It is a complicated explanation....
Elizabeth and her identical twin sister Kaitlin both had surgery for severe reflux when they were four months old. Because of lung disease due to constant aspiration, they were both on oxygen for about nine months during their first year of life. After that initial surgery, Katilin (with the exception of a bit of kidney reflux that effected her in her first years) has been healthy. Liz has not been as fortunate and she has required seven surgeries, as her Fundoplication has failed over and over, and her repaired hernias have also required additional repair. She has had a Pyloroplasty as well. In addition to the surgeries, she has had more procedures and hospitalizations than I can count. All of this, as hard as it was, wasn't life-consuming. Liz would have a procedure or surgery and bounce right back. She was considered a kid with a chronic issue (GI) but we never considered her a chronically ill child. Ever.
That changed in January of 2010. After a small, simple surgery I noticed that in the weeks following she wasn't herself. She was overly tired, her hair was falling out more than usual and she was bruising. I thought she could be anemic and requested blood work. Her labs showed she had low white cell, red cell and platelet counts and her pediatrician said we'd repeat them and watch it. Over the next six weeks, additional labs all continued to show low counts and Liz had started having low-grade fevers most often at night. She was referred to Hematology/Oncology and had her first bone marrow aspiration and biopsy which revealed abnormal marrow and cell lines, but no cancer.
Around the same time, Liz started having trouble fighting off infection. She has had recurrent sinus infections and CDifficile (her last bout of CDiff lasted nine months). Infectious Disease and Immunology came on board and early on there was talk that if it wasn't cancer, perhaps she'd been exposed to a virus, her body was hit hard by it and it may take time for her to recover. That isn't the case and it became obvious that something more was happening.
Hem/Onc said maybe something was "brewing" and she continued to have labs drawn every 2-4 weeks to watch her counts.
In the meantime, she was getting sick often and we were spending more and more time in the hospital.
In the last two years her GI issues have overwhelmingly taken over as well. She was diagnosed with severe FTT (Failure To Thrive) and she had a PICC placed to deliver TPN (IV nutrition) for four months. She now has a GTube (feeding tube in her stomach) to provide supplemental feeding via formula feeds. Hydration is a huge issue now as well and she often requires IV fluids.
Her motility issues have lead to chronic impaction (stool) and she has suffered horribly in the last year. In October, she had testing done that shows that her colon isn't contracting on its own which is why she is getting impacted.
She has had a total of 5 bone marrow aspirations and biopsies in the past three years and all show that her marrow is hypocellular.
I wish there was a diagnosis, wrapped in a bow and delivered to us, so that we could have an overall plan. We may or may not ever get that. In Liz's case, it is almost a chicken or egg first kind of question.... what came first, the GI issues, or something bigger causing the GI issues? The marrow and blood being the primary cause, or nutrition or something else causing the marrow to be abnormal and not recover?
I have sat at tables with the heads of multiple departments as they talked about Liz's case and they too play the "which came first" game.
What is the next step in Liz's care or treatment plan?
Sigh. This too is a tough question as currently, we have some tough decisions to make.
As for the bone marrow and blood issues- We have held off on testing her marrow for about 8 months. Our current strategy is to give her nutritional status time to get better (with GTube feeds and better Prealbumin counts) and we will test her again in May or June. IF poor nutrition was the cause of marrow failing to produce (I refuse to use the term marrow failure as docs have used) then now that her status is improving, her marrow will show recovery. That is our hope. If it doesn't show recovery and shows the abnormal cells that it has, then we have a problem.
Liz does sinus rinses and takes an inhaled antibiotic (nasal inhalation) multiple times a day to try and hold off sinus infections. For her, antibiotics required to treat infection lead to CDifficile, which is devastating on her system.
Some have asked why I am not taking her to other facilities/doctors....
The truth is that I am! First of all, our local children's hospital is not some small, hick-town facility. It is a major, recognized hospital with some amazing physicians and programs. Having said that, we have taken her to UCLA, CHLA, Rady's. Cedars Sinai and we have consulted with out of state hospitals as well. Currently, three of her specialists are at CHLA.
Kaitlin and Liz are identical twins, why is Kate not sick if one of the possible diagnoses is a genetic disease?
This too is a complicated answer. In short, if Liz does have a genetic disease, Kate could be spared even though they are identical twins. Or, Kate could be a carrier and it will take time or an assault on her body (illness, surgery, pregnancy) to show itself. It is much too complicated to explain in written form, but we have asked the question and understand the answer.
Why are we in medical debt when there are government programs and max-spending even with insurance.....
Currently, Liz does not have a diagnosis that is covered by Medical or CCS. SUPER frustrating that she doesn't qualify for these health coverage programs.
We have private insurance but we pay towards every out of network physician that is billed (this includes radiologists, pathologists and anesthesiologists that are on service at the time Liz requires care; we don't get to choose these physicians. Co-pays for each office visit are $45.00 and her monthly prescriptions cost about $300. Those two costs alone add up.
Does Liz see someone to talk to about her feelings?
Yes. Liz has had a therapist for three years. Some months she goes once a week and others not at all. I recognized early on that she needed someone to talk things out with if she would like. It was a proactive choice on my part that I'm so happy I made, especially now that things have gotten so bad.
On Monday, our Liz will be admitted to Children's Hospital Los Angeles for a while. We were told days, but we've learned to pack for weeks. On Tuesday she will head to the OR for a procedure to place a PICC line again. Originally, we planned on placing the PICC so that I had IV access at home to provide IV hydration to her. This week plans changed, and the new plan is to have Liz go on gut rest for a while, and receive TPN (IV nutrition) for awhile.
While we are at CHLA, the enteral nutrition team will also consult and try and figure out why her zinc keeps dropping so low.
The geneticist will have labs drawn for the two syndromes he asked to test her for almost three weeks ago, but I wanted him to justify his reasoning. After hearing Hem/Onc's impression of her last bone marrow slides and after the geneticists argument provided in chart notes and conversation to Liz's pediatrician, we have decided to agree to the labs. I have hesitated sharing the names of the diseases with others, as they are both terminal and that is a dramatic thought, but prayer is powerful and so I share now and ask for prayer that she will test negative for both Pearson's Syndrome and MNGIE (both mitochondrial diseases). I do not think she has either.
Hopefully Surgery will consult as well during our stay; it has been decided that Liz needs the cecostomy (surgery to provide colon-access from the outside so that we can do daily flushes) and given her complicated case and so much scarring from all of her previous surgeries, it will be important to have surgeons who are comfortable working on her.
Surgery will not take place during this admit. She must first have the colon manomerty studies repeated and a surgical team in place.We plan to come home and return in about a month for the Cecostomy.
Please pray for Liz's tolerance and patience. Being in the hospital is rough. Last year she needed the PICC line moved to her other arm a month after placing the first, so she is hesitant and dreading having the line in. Gut rest will be difficult as well, as she won't be able to eat by mouth for weeks-month.
We all feel the effects of a hospitalization as Liz and I are away from home. Not being at our local hospital is especially hard because I won't be able to see Jackson or Kate while we are in LA. Walter has been on vacation this week and getting away from work will be difficult since he has just had this time off.
We are praying we are making the right choices for our girl-
Thank you for continuing to pray and encourage us.
Below is an entry I wrote two weeks ago but didn't post. I'll attach to this one for those who have asked the same questions.....
It has been a few weeks since I last posted. I decided to write tonight to address some questions I have been asked or heard others say they have been asked.
What is wrong with Elizabeth-
Hmm, good question and I wish I knew the answer. If you are looking for an overall diagnosis as an answer, there isn't one yet. It is a complicated explanation....
Elizabeth and her identical twin sister Kaitlin both had surgery for severe reflux when they were four months old. Because of lung disease due to constant aspiration, they were both on oxygen for about nine months during their first year of life. After that initial surgery, Katilin (with the exception of a bit of kidney reflux that effected her in her first years) has been healthy. Liz has not been as fortunate and she has required seven surgeries, as her Fundoplication has failed over and over, and her repaired hernias have also required additional repair. She has had a Pyloroplasty as well. In addition to the surgeries, she has had more procedures and hospitalizations than I can count. All of this, as hard as it was, wasn't life-consuming. Liz would have a procedure or surgery and bounce right back. She was considered a kid with a chronic issue (GI) but we never considered her a chronically ill child. Ever.
That changed in January of 2010. After a small, simple surgery I noticed that in the weeks following she wasn't herself. She was overly tired, her hair was falling out more than usual and she was bruising. I thought she could be anemic and requested blood work. Her labs showed she had low white cell, red cell and platelet counts and her pediatrician said we'd repeat them and watch it. Over the next six weeks, additional labs all continued to show low counts and Liz had started having low-grade fevers most often at night. She was referred to Hematology/Oncology and had her first bone marrow aspiration and biopsy which revealed abnormal marrow and cell lines, but no cancer.
Around the same time, Liz started having trouble fighting off infection. She has had recurrent sinus infections and CDifficile (her last bout of CDiff lasted nine months). Infectious Disease and Immunology came on board and early on there was talk that if it wasn't cancer, perhaps she'd been exposed to a virus, her body was hit hard by it and it may take time for her to recover. That isn't the case and it became obvious that something more was happening.
Hem/Onc said maybe something was "brewing" and she continued to have labs drawn every 2-4 weeks to watch her counts.
In the meantime, she was getting sick often and we were spending more and more time in the hospital.
In the last two years her GI issues have overwhelmingly taken over as well. She was diagnosed with severe FTT (Failure To Thrive) and she had a PICC placed to deliver TPN (IV nutrition) for four months. She now has a GTube (feeding tube in her stomach) to provide supplemental feeding via formula feeds. Hydration is a huge issue now as well and she often requires IV fluids.
Her motility issues have lead to chronic impaction (stool) and she has suffered horribly in the last year. In October, she had testing done that shows that her colon isn't contracting on its own which is why she is getting impacted.
She has had a total of 5 bone marrow aspirations and biopsies in the past three years and all show that her marrow is hypocellular.
I wish there was a diagnosis, wrapped in a bow and delivered to us, so that we could have an overall plan. We may or may not ever get that. In Liz's case, it is almost a chicken or egg first kind of question.... what came first, the GI issues, or something bigger causing the GI issues? The marrow and blood being the primary cause, or nutrition or something else causing the marrow to be abnormal and not recover?
I have sat at tables with the heads of multiple departments as they talked about Liz's case and they too play the "which came first" game.
What is the next step in Liz's care or treatment plan?
Sigh. This too is a tough question as currently, we have some tough decisions to make.
As for the bone marrow and blood issues- We have held off on testing her marrow for about 8 months. Our current strategy is to give her nutritional status time to get better (with GTube feeds and better Prealbumin counts) and we will test her again in May or June. IF poor nutrition was the cause of marrow failing to produce (I refuse to use the term marrow failure as docs have used) then now that her status is improving, her marrow will show recovery. That is our hope. If it doesn't show recovery and shows the abnormal cells that it has, then we have a problem.
Liz does sinus rinses and takes an inhaled antibiotic (nasal inhalation) multiple times a day to try and hold off sinus infections. For her, antibiotics required to treat infection lead to CDifficile, which is devastating on her system.
Some have asked why I am not taking her to other facilities/doctors....
The truth is that I am! First of all, our local children's hospital is not some small, hick-town facility. It is a major, recognized hospital with some amazing physicians and programs. Having said that, we have taken her to UCLA, CHLA, Rady's. Cedars Sinai and we have consulted with out of state hospitals as well. Currently, three of her specialists are at CHLA.
Kaitlin and Liz are identical twins, why is Kate not sick if one of the possible diagnoses is a genetic disease?
This too is a complicated answer. In short, if Liz does have a genetic disease, Kate could be spared even though they are identical twins. Or, Kate could be a carrier and it will take time or an assault on her body (illness, surgery, pregnancy) to show itself. It is much too complicated to explain in written form, but we have asked the question and understand the answer.
Why are we in medical debt when there are government programs and max-spending even with insurance.....
Currently, Liz does not have a diagnosis that is covered by Medical or CCS. SUPER frustrating that she doesn't qualify for these health coverage programs.
We have private insurance but we pay towards every out of network physician that is billed (this includes radiologists, pathologists and anesthesiologists that are on service at the time Liz requires care; we don't get to choose these physicians. Co-pays for each office visit are $45.00 and her monthly prescriptions cost about $300. Those two costs alone add up.
Does Liz see someone to talk to about her feelings?
Yes. Liz has had a therapist for three years. Some months she goes once a week and others not at all. I recognized early on that she needed someone to talk things out with if she would like. It was a proactive choice on my part that I'm so happy I made, especially now that things have gotten so bad.
Tuesday, January 8, 2013
You Are My Race
http://www.youtube.com/watch?v=OTg1n95--KE
{There is a favorite children's book of mine called You Are My I Love You (many of you have received the book from me as a baby shower gift) and currently lines from the book are making their way around Pinterest and facebook. Seriously, the beautiful words in the story get me every time I read it to one of the kids.
Two of the lines in the book have touched me in a new way over the last few years as they make me think of the journey Liz is on....I am your finish line, you are my race.
I am your way home, you are my new path.
I have said more times than I can remember and I have heard other mamas echo the same, that this feels like a marathon we are running with our sick children. It is exhausting and difficult and I wish we knew where the finish line was. I'm starting to understand that there may be no finish line for Liz medically. She is always going to have to deal with her health and this marathon is going to be a lifetime race.
What I can do as her mom is be her finish line, so to speak. I can cheer her on. I can advocate for her and rally for her so that there are mile markers she can see and accomplish and overcome along the way. When she gets too tired, I can pick her up and carry her until she is ready to run again. I can open my arms and wave her in and towards her finish line- whatever that may be.
We never would have chosen this path, but I will help her find her way. }
The last week has been difficult for Liz. Since my last update, she did end up starting on an oral antibiotic as her Staph just wasn't healing and her sinus infection had gotten pretty bad. We are now just praying that she stays clear of CDifficile infection as a result.
In the past week she has had two clean-outs due to impaction. It is just this never-ending cycle of impaction, dehydration, soiling, not eating, and back around again.
Her stoma (GTube site) still isn't looking good or healing the way we'd hoped. She had an upper GI last Friday that showed the tube is placed well in her stomach which is good news. Her surgeon is thinking we may have to change to a new kind of tube, but I would hate to do that as right now she has a low-profile tube which means she has a little "button" sticking out of her belly and I hook her to the tube during her feeds. The new kind of tube would be a tube hanging out of her all of the time. Not ideal. The GI doctor and the amazing GI nurse clinician at the hospital are working to see how we can get her into see the inpatient wound care nursing team, as they know tricks and have supplies that even most docs don't.
She has declined in terms of her colon over the last couple weeks. We have started a new plan of weekly clean-outs and enemas in addition to her meds, but two of her doctors have asked me to seriously consider surgery to do a Cecostomy and Appendicostomy. I cannot even go there right now.
Today I took her to see her pediatrician because she has been short of breath over the last few days....alright, more like I noticed it about 5 days ago. She has been saying that she feels dizzy at times, but that is not a new thing and is usually caused by dehydration. The shortness of breath is new though and it has gotten worse, so I took her in..... she has partially collapsed lungs. This has been caused by the stomach pain she has been having and being so full of stool has caused her not to breathe deeply enough to really get air through. She is in no distress and she has no wheezing or chest pain other than when she blows out or takes a deep breath. She is using the spirometer every hour to move those lungs and we are doing breathing treatments every four hours to try and prevent pneumonia (she has a bit of a drip and congestion now and she has had pnemonia before and is susceptible). She'll be re-evaluated on Thursday. I am sure it will be better by then.
There has been discussion about her next bone marrow aspiration. GI said she should be ready in the Spring to have it done, but her Pediatrician wants to wait until the summer. We want to make sure that if her improved nutritional status is going to help her marrow we give it enough time to work and prove itself rather than testing too early and thinking it hasn't helped in marrow recovery.
Next week she will see a Genetics and Mitochondrial specialist for the first time at the request of a few of her doctors. Honestly, I am too covered in poop (figuratively, but literally too) to give much thought to that appointment or the reasons we are being sent there. I will deal with it on that day.
School.... is up in the air. I need to decide what to do about it. She missed the week before the two week Christmas break and she isn't going back this week. We just need to decide what will be best. For now, she is my shadow again.
Thank you to those who continue to pray for her and support us on this race. I hope you know how much we appreciate you.
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