It has been a long time since I posted. A really long time. But things are changing here and there is no better way for me to organize my mind and make it easier to keep a large group of people up to date on what is happening than through my long lost blog. Over the next few days I'll post updates about various health issues Tomas is still dealing with and some new ones that have cropped up. To cheat a bit and put the cart before the horse; this story doesn't look like it will end my way. Today we learned it is unlikely Tomas will ever come off of TPN. That in and of itself is usually a life-shortening condition; combined with the other issues going on, well, like I said, not my way.
I would like a re-write but as of yet my editor doesn't agree. He is calling the shots and has set the form for the story. Oh, He is letting me use my own words and embellisments, letting my thoughts and desires scream from the pages, but the outline is still there; already written. My job is to show the world how beautiful His outline is.
And it is beautiful. It is also, thankfully, unrevealed. So while the realism of the place we are in is not lost on me, my only option is to continue on to see what He wrote.
Friday, July 20, 2012
Monday, February 27, 2012
Of irony and honey
Tomas had several appointments over the last week so we were at the hospital quite a bit. He has been here long enough and often enough now that people recognize him. Several times over the few visits people would stop us and say hello, comment on how good he looked, and say that it was nice to see him as an outpatient for a change. Ironically, I cringed. Here we were nearing the end of February and I longed to make it through a month without an admit. And as you all know God and I have this clearly established pattern of Him bending my will to His. The idea occured to me that if I expressed this desire out loud, then surely God would pounce.
The first visit was to pulmonology. The doctor didn't have much in the way of encouraging news. He said that because of Tomas' immune issues and lung issues he is prediposed to getting frequent pneumonias. Since we are already doing everything we can do to prevent them and it is not working than this is just going to be the way it is. All right, next. A series of skeletal xrays to check why he won't bear weight; those showed Bilateral Coxa Valga deformity - a type of hip dysplasia. All right, next! Nephrology, a new service for him. That doctor had better news. Although she is not going to reduce the high amount of TPN volume Tomas is getting because he is at a very high risk for getting kidney stones since he doesn't pee when fluids are not running, she doesn't think there is anything else that needs to be addressed right now and only wants to follow him once a year. Woohoo, now we're talking.
The next day was his bone marrow biopsy and lumbar puncture. Good news is that for the first time ever he did not need airway support while going under general anesthesia. No intubating, no LMA, no nothing. Just a bit of repositioning every now and then. This combined with the fact that for the last 4 surgeries/procedures he has had no severe waking up issues makes me think that he has turned the corner where anesthesia is concerned. Bad news is his lumbar puncture showed his opening pressure higher than it was in late August, which means that his intracranial hypertension is worse, and that trying to reduce his medication a few months ago didn't work. So the doctor ordered the dose back to the original strength while we wait to follow up with him. After that came a chat with Hematology. That doctor wanted to wait to start the Neupogen injections so that she could track Tomas' neutrophil count while he was healthy. I agreed because I wanted to see if adding in the second Ethanol lock per week would make a difference. Then she did it, she said "After all, it is already the 23rd, you are only a few days away from making the whole month." Ack, that was it. Now I had to respond. "Yes", I squeeked out, hoping the omnipresent One wasn't. That was Thursday.
Tomas was admitted yesterday. He has a fever and a dry cough, feeding intolerance and retching. Nothing has come back positive yet so they are still looking for the source of the infection. This makes the 12th month in a row he has been admitted. For one complete year he has been in the hospital at least once per month Sixteen admissions in 12 months and only one of them was overnight. To say I am tired, that my girls are tired, my husband, his employer, our family, friends and bank account are tired is the exact opposite of a hyperbole.
But while God has not put down his pruning shears, His salve is of the sweetest kind. Once again friends have come to my rescue offering childcare so I can have peace of heart while I am once again separated from my daughters. And wedged between those doctor's appointments and this admission was a day spent in His house with my homeschool group. Because it was on a Friday during Lent, we walked the Stations of the Cross.With each station Jesus grew weaker, falling several times. With each station, bowing and rising, I grew stronger. With each step to His crucifixtion Jesus drew me one step further from the abyss of discouragement and the darkness that surely lies in a heart filled with despair. With divine irony, while I was remembering His pain and suffering, He poured out His graces to soothe my wounds. It is the ironic fate of the sacrificial lamb; only through His blood can I be cleansed.
The first visit was to pulmonology. The doctor didn't have much in the way of encouraging news. He said that because of Tomas' immune issues and lung issues he is prediposed to getting frequent pneumonias. Since we are already doing everything we can do to prevent them and it is not working than this is just going to be the way it is. All right, next. A series of skeletal xrays to check why he won't bear weight; those showed Bilateral Coxa Valga deformity - a type of hip dysplasia. All right, next! Nephrology, a new service for him. That doctor had better news. Although she is not going to reduce the high amount of TPN volume Tomas is getting because he is at a very high risk for getting kidney stones since he doesn't pee when fluids are not running, she doesn't think there is anything else that needs to be addressed right now and only wants to follow him once a year. Woohoo, now we're talking.
The next day was his bone marrow biopsy and lumbar puncture. Good news is that for the first time ever he did not need airway support while going under general anesthesia. No intubating, no LMA, no nothing. Just a bit of repositioning every now and then. This combined with the fact that for the last 4 surgeries/procedures he has had no severe waking up issues makes me think that he has turned the corner where anesthesia is concerned. Bad news is his lumbar puncture showed his opening pressure higher than it was in late August, which means that his intracranial hypertension is worse, and that trying to reduce his medication a few months ago didn't work. So the doctor ordered the dose back to the original strength while we wait to follow up with him. After that came a chat with Hematology. That doctor wanted to wait to start the Neupogen injections so that she could track Tomas' neutrophil count while he was healthy. I agreed because I wanted to see if adding in the second Ethanol lock per week would make a difference. Then she did it, she said "After all, it is already the 23rd, you are only a few days away from making the whole month." Ack, that was it. Now I had to respond. "Yes", I squeeked out, hoping the omnipresent One wasn't. That was Thursday.
Tomas was admitted yesterday. He has a fever and a dry cough, feeding intolerance and retching. Nothing has come back positive yet so they are still looking for the source of the infection. This makes the 12th month in a row he has been admitted. For one complete year he has been in the hospital at least once per month Sixteen admissions in 12 months and only one of them was overnight. To say I am tired, that my girls are tired, my husband, his employer, our family, friends and bank account are tired is the exact opposite of a hyperbole.
But while God has not put down his pruning shears, His salve is of the sweetest kind. Once again friends have come to my rescue offering childcare so I can have peace of heart while I am once again separated from my daughters. And wedged between those doctor's appointments and this admission was a day spent in His house with my homeschool group. Because it was on a Friday during Lent, we walked the Stations of the Cross.With each station Jesus grew weaker, falling several times. With each station, bowing and rising, I grew stronger. With each step to His crucifixtion Jesus drew me one step further from the abyss of discouragement and the darkness that surely lies in a heart filled with despair. With divine irony, while I was remembering His pain and suffering, He poured out His graces to soothe my wounds. It is the ironic fate of the sacrificial lamb; only through His blood can I be cleansed.
Thursday, February 16, 2012
It's been a while...
I've come back here so many times over the last few months but never managed to sign in and update. So many things have changed and yet so much is still right where I left off in October. Line infection after line infection; illness after illness.
Then something happened yesterday morning that made me come running here to organize my thoughts. Tomas was pretty cranky most of the night and was still sleeping hard at 8am, so I cancelled his 8:45 therapy session and let him sleep. When he finally woke up, he the girls and I sat on his bedroom floor playing. After several rousing rounds of "Itsy bitsy spider", I looked at all three of them sitting there wrapped in the pure joy of being together and I was so grateful for homeschooling and the lazy mornings it affords us. But my very next thought made me tremble and I had to shove it away in order to keep from sobbing. Will this morning be one of my most precious memories one day?
In the last two weeks Tomas' mortality has loomed large. Not because anything acute is happening or because anything new and heavy has come our way, but because the chronic-ness of being Tomas is taking its toll. He saw 3 secialists last week and all of them want to trial new meds, all of which have potentially large side effects. Hematology is the one that brought the biggest.
The GI doctor approached hem/onc asking her to do something about his neutropenia in order to help Tomas fight the line infections, or better yet, to keep from getting so many. Initially she said no, the treatment for neutropenia is a growth hormone injection. It has been linked to leukemia. In the past various doctors have told me they would only use the med on Tomas if "our backs were against the wall", or "as a last resort". GI came back, presumeably after this last infection in January, asking again. This time the oncologist wanted to know if Tomas was really getting more line infections then their average patient. GI's answer was an adamant yes, so she agreed to do a 3 month trial if my husband and I approved.
I always imagined the tough decisions centering around DNRs and healthcare directives; discussions with a palliative care team, hospice care - that sort of thing. I certainly didn't see this one coming. I went into the appt. expecting it to be just his regular old oncology follow up, instead I was hit with this huge discussion on how dangerous a place Tomas is in right now.
At this point he is getting line infections every 4-6 weeks. Mike and I have wondered how long his little body could continue fighting at that pace. The dr. confirmed that was GIs thinking and why he was pushing for action and that was the ONLY reason she had agreed to do the trial. The shots do boost neutrophil count, but patients with congenital neutropenia have transistioned to AML (actue myeloid leukemia). The particular type of cancer Tomas is already at risk for. His current risk level is 25-33%, depending on what studies you read. Adding in the neupogen puts us in uncharted waters. The oncologist also told me that she did not think Tomas would fare well against leukemia, that he has too many other issues going on to effectively fight it. This was particualarly depressing because I had always banked on the Down syndrome superstar in him to pull through if he ever did transition. She said normally DS darlings do very well, and they (as a group) have an astronomical recovery rate of 98%. I know of some families that fell into the 2% group so I was not oblivious, but again it was the odds I was banking on. They're gone now, a safety net disappeared; whether we start the neupogen or not.
So this was the choice given to my husband and I: Do nothing - he may or may not continue to get line infections while we attempt to get him off tpn; should he continue to get them, they may or may not kill him. Do a 3 month trial of the neupogen - he may or may not transition to leukemia; should he transition, it may or may not kill him.
After asking many opinions we decided to go forward with the injections. The idea is if he gets a line infection during the 3 months trial then we stop the shots immediately because they are not helping and therefor not worth the risk. If he is infection free, then we face another tough decision, continually weighing the risk/benefit.
Tomas goes in for a baseline bone marrow biopsy next Thursday and then we start from there. And that flashes me back/forward to the morning on the floor. I want to forget it, I want to have so many more mornings like it that the commonness of it pushes it away from my memory banks, makes it be mundaine and forgetable.
But Lord, if I don't get 1000 more like it, thank you for that 1. Thank you for that sun shining, heart music singing, face hurting smiling morning from Heaven.
Then something happened yesterday morning that made me come running here to organize my thoughts. Tomas was pretty cranky most of the night and was still sleeping hard at 8am, so I cancelled his 8:45 therapy session and let him sleep. When he finally woke up, he the girls and I sat on his bedroom floor playing. After several rousing rounds of "Itsy bitsy spider", I looked at all three of them sitting there wrapped in the pure joy of being together and I was so grateful for homeschooling and the lazy mornings it affords us. But my very next thought made me tremble and I had to shove it away in order to keep from sobbing. Will this morning be one of my most precious memories one day?
In the last two weeks Tomas' mortality has loomed large. Not because anything acute is happening or because anything new and heavy has come our way, but because the chronic-ness of being Tomas is taking its toll. He saw 3 secialists last week and all of them want to trial new meds, all of which have potentially large side effects. Hematology is the one that brought the biggest.
The GI doctor approached hem/onc asking her to do something about his neutropenia in order to help Tomas fight the line infections, or better yet, to keep from getting so many. Initially she said no, the treatment for neutropenia is a growth hormone injection. It has been linked to leukemia. In the past various doctors have told me they would only use the med on Tomas if "our backs were against the wall", or "as a last resort". GI came back, presumeably after this last infection in January, asking again. This time the oncologist wanted to know if Tomas was really getting more line infections then their average patient. GI's answer was an adamant yes, so she agreed to do a 3 month trial if my husband and I approved.
I always imagined the tough decisions centering around DNRs and healthcare directives; discussions with a palliative care team, hospice care - that sort of thing. I certainly didn't see this one coming. I went into the appt. expecting it to be just his regular old oncology follow up, instead I was hit with this huge discussion on how dangerous a place Tomas is in right now.
At this point he is getting line infections every 4-6 weeks. Mike and I have wondered how long his little body could continue fighting at that pace. The dr. confirmed that was GIs thinking and why he was pushing for action and that was the ONLY reason she had agreed to do the trial. The shots do boost neutrophil count, but patients with congenital neutropenia have transistioned to AML (actue myeloid leukemia). The particular type of cancer Tomas is already at risk for. His current risk level is 25-33%, depending on what studies you read. Adding in the neupogen puts us in uncharted waters. The oncologist also told me that she did not think Tomas would fare well against leukemia, that he has too many other issues going on to effectively fight it. This was particualarly depressing because I had always banked on the Down syndrome superstar in him to pull through if he ever did transition. She said normally DS darlings do very well, and they (as a group) have an astronomical recovery rate of 98%. I know of some families that fell into the 2% group so I was not oblivious, but again it was the odds I was banking on. They're gone now, a safety net disappeared; whether we start the neupogen or not.
So this was the choice given to my husband and I: Do nothing - he may or may not continue to get line infections while we attempt to get him off tpn; should he continue to get them, they may or may not kill him. Do a 3 month trial of the neupogen - he may or may not transition to leukemia; should he transition, it may or may not kill him.
After asking many opinions we decided to go forward with the injections. The idea is if he gets a line infection during the 3 months trial then we stop the shots immediately because they are not helping and therefor not worth the risk. If he is infection free, then we face another tough decision, continually weighing the risk/benefit.
Tomas goes in for a baseline bone marrow biopsy next Thursday and then we start from there. And that flashes me back/forward to the morning on the floor. I want to forget it, I want to have so many more mornings like it that the commonness of it pushes it away from my memory banks, makes it be mundaine and forgetable.
Friday, October 14, 2011
Down Syndrome Awareness - two years later
Here we are; a year after I wrote the story. I am sitting in the hospital next to Tomas' crib while he sleeps. He has been inpatient for 7 days in order to have some procedures done and some tests run. This makes 4 hospital stays in 4 months for a total of 20 admissions in his 32 months of life. Tomas has had a rough few months; 2 line infections, one that was pretty severe, degenerating gut motility, progressive liver damage from the tpn, re-discovery of the ASD in his heart, a recommendation from one of his specialists that he be evaluated for a mitochondiral disorder, chronic neutropenia which prompted another bone marrow biopsy and some neutrophil testing, and another fasting study to get to the bottom of the metabolic disease causing his hypoglecemia. The goal of this hospital stay was to be able to safely reduce the number of hours his TPN runs in a day, in the hopes that we can slow the liver disease and possibly reverse it. In order to do this he has to be able to fast as he can not take in enough volume by tube feedings anymore to reliably count on enteral feeds as a source of glucose. Before admit he was fasting 4 hours and we are going home tomorrow with a plan for fasting 6 hours.
What is glorious about that? Grand, beautiful, splendid? Nothing. I miss my girls, I miss my husband, I haven't unpacked my house, I know hospital life inside and out. I have minor anxiety attacks when I see a NICU unit, and had a full fledged PTSD episode when Tomas was sent to ICU even though it was just for some testing and he was healthy. How is it that I can laugh away an afternoon in a windowless room, hold my moaning, near comatose hypoglycemic child in the evening and then smile again with the sunrise? The answer is so easy.
Tomas came into this life with no guarantees. I never had an expectation that he would live a long healthy life. I just needed to get past the first 3 days and the first surgery. Then his liver stopped working when he was a week old and again my husband and I just waited. Next came the blue spells which left me thinking that this time for sure I was holding my blue, limp, dead baby. After that came that horrible, terrible, angelic night that he coded with an angel by his crib. Many more life threathening events followed, waxing and waning with his given health status, up until I got a fresh reminder in August with the sepsis and another blue spell. For my girls I fully expect that barring a tragic accident they will grow up and grow old; it is just not the same for Tomas. I have no idea if an acute illness will kill him, a chronic illness will kill him, or barring any tragic accidents he will grow up and grow old.
Point being that every sunrise is something to give thanks for, even the ones that happen here in the hospital. Each day is a gift, filled with gratitude for the continued existence of my son, my daughters, my spouse, my life. I do not ignore the difficulties my family faces, or sweep them aside, or make light of them - I couldn't if I wanted to as they encompass every aspect of it. Everything - right down to needing toilet paper but being unable to just run to the grocery store for it - that kind of everything. Instead I wrap them around me, build them into my being and then take a step. Somedays it is just one step, getting out of bed, those are usually the days after I've been notified of something else gone wrong. Other days, the glorious ones, the ones that I flashback to at the crackle of a leaf, or the scent of the ocean, or the warm sun hitting my cheek, those days my God I swear I can soar. Most days fall in between; the drudgery of day to day living. But all those days snap together to make the picture I see. And the picure is good and happy and at peace in this moment.
What is glorious about that? Grand, beautiful, splendid? Nothing. I miss my girls, I miss my husband, I haven't unpacked my house, I know hospital life inside and out. I have minor anxiety attacks when I see a NICU unit, and had a full fledged PTSD episode when Tomas was sent to ICU even though it was just for some testing and he was healthy. How is it that I can laugh away an afternoon in a windowless room, hold my moaning, near comatose hypoglycemic child in the evening and then smile again with the sunrise? The answer is so easy.
Tomas came into this life with no guarantees. I never had an expectation that he would live a long healthy life. I just needed to get past the first 3 days and the first surgery. Then his liver stopped working when he was a week old and again my husband and I just waited. Next came the blue spells which left me thinking that this time for sure I was holding my blue, limp, dead baby. After that came that horrible, terrible, angelic night that he coded with an angel by his crib. Many more life threathening events followed, waxing and waning with his given health status, up until I got a fresh reminder in August with the sepsis and another blue spell. For my girls I fully expect that barring a tragic accident they will grow up and grow old; it is just not the same for Tomas. I have no idea if an acute illness will kill him, a chronic illness will kill him, or barring any tragic accidents he will grow up and grow old.
Point being that every sunrise is something to give thanks for, even the ones that happen here in the hospital. Each day is a gift, filled with gratitude for the continued existence of my son, my daughters, my spouse, my life. I do not ignore the difficulties my family faces, or sweep them aside, or make light of them - I couldn't if I wanted to as they encompass every aspect of it. Everything - right down to needing toilet paper but being unable to just run to the grocery store for it - that kind of everything. Instead I wrap them around me, build them into my being and then take a step. Somedays it is just one step, getting out of bed, those are usually the days after I've been notified of something else gone wrong. Other days, the glorious ones, the ones that I flashback to at the crackle of a leaf, or the scent of the ocean, or the warm sun hitting my cheek, those days my God I swear I can soar. Most days fall in between; the drudgery of day to day living. But all those days snap together to make the picture I see. And the picure is good and happy and at peace in this moment.
Sunday, August 14, 2011
Recap
Friday 8/5 - We close on our home in NY
Saturday 8/5 - While cleaning the house in order to move in the next day, Tomas gets grumpy, spikes a temp, and has trouble moving air well. Call 911 and are brought to local ER.
Saturday evening - Unable to find an easy solution to his issues we are transported down to New York Presbyterian. 2 doses of morphine need to control his pain. IV antibiotics started.
Saturday to Sunday 8/6 - In ER at NYP testing everything imaginable, morphine as needed, bowel surgery likely. Rest of family moves out of hotel into house.
Sunday evening - Moved up to room under GI care. Round the clock pain meds and antibiotics, antifungals added.
Monday 8/7 - perking up a bit, sitting up and watching VeggieTales. Line infection comes back positive for bacteria, putting bowel surgery on back burner as it is not the source of Tomas' troubles. Mike and girls come to visit.
Tuesday 8/9 - Line infection not clearing but under control, possibility of surgery to remove port.
Wednesday 8/10 - Moving truck unloads at home. Line infection now showing yeast as well, port has to be removed. Breakthrough fevers and pain, sliding downhill fast.
Thursday 8/11 - Unresponsive and lethargic all day. White blood cell counts and platelets are very low. Surgery to remove port.
Friday 8/12 - Worsening of condition, everyone worried, tests ordered to look for hidden yeast in the body. Heart and kidneys are clear but the eye doctor found swelling of the fluid around the brain, putting pressure on his occular nerve. An emergency CT scan of the brain is orderd. No masses found. He is very, very sick.
Saturday 8/13 - My anniversary. Day surgery ordered open, OR nurses called in from home, and the lumbar puncture is done. He is still so tuned out to the world. Initial fluid tests show no meningitis but spinal fluid pressure is too high.
Saturday night - A new pain med is ordered that is also a strong anti-inflammitory and Tomas perks up. He sits up in his crib, sings along to Veggietales and gives me little smiles. And then he sleeps, almost all night, only waking twice. Such a blessing.
Sunday 8/14 - My husband is coming down for the day and I will go see my house for the first time since we have moved in.
Tomas has 4 issues going on:
1. The bacterial and fungal infections in his blood - they are being treated with IV antibiotics and antifungals. The bacterial infection is cleared and he has been moved to maintenence antibiotics on that, yeast is still growing, but slower than before so we are headed in the right direction. He will need this IV therapy for weeks, but it can be continued at home.
2. GI issues - We have intermittently tried to feed into his J but so far no luck, even at just 7 mls/h (a little more than a teaspoon an hour). There is also the abnormal section of bowel and he will need a new central line placed before we can go home.
3. Blood counts - Hematology hasn't weighed in yet, but most likely it is suppression in the bone marrow due to being so ill, and his counts should climb once he starts feeling better.
4. Due to the increased pressure in his skull and the increased pressure in his spinal cord fluid Neuro is being brought in. So far all we know is there are no blatant masses and meningitis is unlikely (there is still a chance the fluid could grow something).
He is on a ton of meds. Besides his regular ones, all the infection therapy, he is also getting constant anti-nausea and antiinflammitory meds. He has two IVs (one in each hand), and so far has only blown one (for a total of 3 sticks). That is great for him.
The best guess anyone can give is he will be here for another week, or more depending on what neuro finds and if the spinal fluid growths anything.
As always, the community of people surrounding us has lifted and cared for my family. Family, friends, and strangers contribute a lot or a little to make something beautiful happen. It is one of the gifts that Tomas brings, that any sick little one brings. The number of kindnesses that would go undone without these least of us among us would make for a much darker world. Thank you.
Saturday 8/5 - While cleaning the house in order to move in the next day, Tomas gets grumpy, spikes a temp, and has trouble moving air well. Call 911 and are brought to local ER.
Saturday evening - Unable to find an easy solution to his issues we are transported down to New York Presbyterian. 2 doses of morphine need to control his pain. IV antibiotics started.
Saturday to Sunday 8/6 - In ER at NYP testing everything imaginable, morphine as needed, bowel surgery likely. Rest of family moves out of hotel into house.
Sunday evening - Moved up to room under GI care. Round the clock pain meds and antibiotics, antifungals added.
Monday 8/7 - perking up a bit, sitting up and watching VeggieTales. Line infection comes back positive for bacteria, putting bowel surgery on back burner as it is not the source of Tomas' troubles. Mike and girls come to visit.
Tuesday 8/9 - Line infection not clearing but under control, possibility of surgery to remove port.
Wednesday 8/10 - Moving truck unloads at home. Line infection now showing yeast as well, port has to be removed. Breakthrough fevers and pain, sliding downhill fast.
Thursday 8/11 - Unresponsive and lethargic all day. White blood cell counts and platelets are very low. Surgery to remove port.
Friday 8/12 - Worsening of condition, everyone worried, tests ordered to look for hidden yeast in the body. Heart and kidneys are clear but the eye doctor found swelling of the fluid around the brain, putting pressure on his occular nerve. An emergency CT scan of the brain is orderd. No masses found. He is very, very sick.
Saturday 8/13 - My anniversary. Day surgery ordered open, OR nurses called in from home, and the lumbar puncture is done. He is still so tuned out to the world. Initial fluid tests show no meningitis but spinal fluid pressure is too high.
Saturday night - A new pain med is ordered that is also a strong anti-inflammitory and Tomas perks up. He sits up in his crib, sings along to Veggietales and gives me little smiles. And then he sleeps, almost all night, only waking twice. Such a blessing.
Sunday 8/14 - My husband is coming down for the day and I will go see my house for the first time since we have moved in.
Tomas has 4 issues going on:
1. The bacterial and fungal infections in his blood - they are being treated with IV antibiotics and antifungals. The bacterial infection is cleared and he has been moved to maintenence antibiotics on that, yeast is still growing, but slower than before so we are headed in the right direction. He will need this IV therapy for weeks, but it can be continued at home.
2. GI issues - We have intermittently tried to feed into his J but so far no luck, even at just 7 mls/h (a little more than a teaspoon an hour). There is also the abnormal section of bowel and he will need a new central line placed before we can go home.
3. Blood counts - Hematology hasn't weighed in yet, but most likely it is suppression in the bone marrow due to being so ill, and his counts should climb once he starts feeling better.
4. Due to the increased pressure in his skull and the increased pressure in his spinal cord fluid Neuro is being brought in. So far all we know is there are no blatant masses and meningitis is unlikely (there is still a chance the fluid could grow something).
He is on a ton of meds. Besides his regular ones, all the infection therapy, he is also getting constant anti-nausea and antiinflammitory meds. He has two IVs (one in each hand), and so far has only blown one (for a total of 3 sticks). That is great for him.
The best guess anyone can give is he will be here for another week, or more depending on what neuro finds and if the spinal fluid growths anything.
As always, the community of people surrounding us has lifted and cared for my family. Family, friends, and strangers contribute a lot or a little to make something beautiful happen. It is one of the gifts that Tomas brings, that any sick little one brings. The number of kindnesses that would go undone without these least of us among us would make for a much darker world. Thank you.
Thursday, August 11, 2011
I'm not an inspiration, I'm a mom!
It has been a rough week, a really, really rough week. Way to many high stress things going on at the same time, and there is not an early end in sight. Tomas is not well, and this line needs to come out ASAP so he can get better.
But something bigger is on my mind this morning. So many of you have said such lovely things to me ABOUT me.
How do you do it? I could never survive. You're amazing. You're such an inspiration.
Well listen up - STOP IT! I am nothing more than you, nothing better than you. I am exactly what you would be if you were here. Do my words inspire you? Thank you, but they are not mine. They are pulled from the collective body of knowledge of men, from the great conversations that have taken place through history. Great books, great stories, great speeches all jumbled together in my brain; words rolling and bumping around waiting to be pulled at the appropriate time.
Does my strength inspire you? Hah, it's SO not mine. It is pulled from the Most Holy Trinity, the vastness of space and the awesomness of creation. It is a limitless supply and I go back for more many, many, many times.Does my faith inspire you? This one is harder, because it was a gift given at a horrible price. Formed from watching people I care about trudge through misery. Those who had faith made it through to share laughter and radiate joy despite the pain. Those who did not hold tight carry with them a great pain from which they find no relief. Early on I had to choose which path I would want to look back upon at the end of my days.
To any of you who think you could not do this, that you would collapse in a corner, Just ask yourself one question. Are you a mother?
The question isn't - do you have a child? It is - are you a mother? Every time your child frustrates you, or angers you, or causes you pain, do you choose to walk towards the problem rather than away? Do you make mistakes and get things wrong, but then go back and apologize? Then you would make it through a trial like this as well. You would rise and rally beyond anything you ever thought yourself capable of, because your child needed you to.
Because it is not about how high the bar is set, it is about whether or not you choose to jump it.
Monday, August 8, 2011
This little piggie
Tomas is admitted to the hospital again, but for something beyond anything he has ever dealt with before. Intense attacks of abdominal pain. After 2 ambulance rides, 2 ERs, and 30 hours he was finally moved up to a room and allowed to rest.
His toes are still this morning. He is sleeping and his toes are as still and peaceful as the rest of him. I prayed for quiet toes many times over the last 2 days. Just recalling the vision of him in pain makes my throat shut, my heart race, and my breaths come with effort. Watching was unbearable. It happened 3 times, each one worse than the last, and longer than the last, requiring more morphine than the last. He would roll to his side and bend his body like a tight "V", rigid and trembling with pain. No crying, just a grunting moan, his hands clasped tightly together and his eyes shut. His eyes were not shut tight which I find comfort in. I pray it means he wasn't there, that he escaped, that while his body raged his soul was safe in the extracorporeal world of The One who loves him more.
While I laid my head next to his back and rubbed his tremoring body and waited for the morphine to work I found myself staring intently at his toes. His feet would shake and his toes would spasm independently, his whole body was in pain, and I realized that Our Lady must have seen Jesus' toes like this too. That she watched his toes spasm, and I couldn't decide what was the greater burden; the dying for the sins of the world, or the watching of your son's toes dying for the sins of the world. To not turn away, not collapse, but to watch and smile gently when your child's eyes met yours in pain; to have that vision burned in front of your own eyes forever is a burden most heavy and enigmatic. Somehow, this great weight strengthens me. It is so heavy there is no room for the petty things, it is so rough it scrapes the meanness and harshness away. It is The Burden of Perspective and it is what the Lord meant. Only through Him can the yoke be tightened and still feel easy, and only through Him can the burden be loaded and still feel light.
Today doctors will round, and tests will be run, and plans will be made. Tomas is on complete gut rest so with any luck the only thing his toes will be doing are eating roast beef and going to market.
His toes are still this morning. He is sleeping and his toes are as still and peaceful as the rest of him. I prayed for quiet toes many times over the last 2 days. Just recalling the vision of him in pain makes my throat shut, my heart race, and my breaths come with effort. Watching was unbearable. It happened 3 times, each one worse than the last, and longer than the last, requiring more morphine than the last. He would roll to his side and bend his body like a tight "V", rigid and trembling with pain. No crying, just a grunting moan, his hands clasped tightly together and his eyes shut. His eyes were not shut tight which I find comfort in. I pray it means he wasn't there, that he escaped, that while his body raged his soul was safe in the extracorporeal world of The One who loves him more.
While I laid my head next to his back and rubbed his tremoring body and waited for the morphine to work I found myself staring intently at his toes. His feet would shake and his toes would spasm independently, his whole body was in pain, and I realized that Our Lady must have seen Jesus' toes like this too. That she watched his toes spasm, and I couldn't decide what was the greater burden; the dying for the sins of the world, or the watching of your son's toes dying for the sins of the world. To not turn away, not collapse, but to watch and smile gently when your child's eyes met yours in pain; to have that vision burned in front of your own eyes forever is a burden most heavy and enigmatic. Somehow, this great weight strengthens me. It is so heavy there is no room for the petty things, it is so rough it scrapes the meanness and harshness away. It is The Burden of Perspective and it is what the Lord meant. Only through Him can the yoke be tightened and still feel easy, and only through Him can the burden be loaded and still feel light.
Friday, July 29, 2011
Tests
We have been in our 1 bedroom hotel suite (with a tiny kitchen) for 34 days. 5 people, 2 dogs, 27 pounds of Special Needs eqipment and 34 days. 'nough said about that! Delay after delay keeps popping up on the closing of our NY house. We were supposed to close on the 15th, at this point the earliest will be the middle of next week.
Our belongings have been trucked up from storage in TX only to be moved to a storage in CT; just waiting on an ok to unload. My husband may have an aneurysm soon, he took off work last Fri. to do a walk through on the house. It only took the morning but he was so stressed he just took a long weekend. That NEVER happens. Having a super stressed out husband hanging around you for 2 days, let alone 3, is the opposite of fun.
Luckily, I have an amazing friend here who is keeping me sane, and letting me use her home as needed when our space gets too cramped. I also met some moms from our new homeschool group last night and everyone was very friendly, so super glad about that.
I knew moving to NY and starting over with new doctors would mean lots of tests for Tomas. He has seen endocrinology, GI, ENT, and Hem/Onc so far.
The endocrine doctor took away his lovely synthroid compund because she says it is not stable and they don't use it at the hospital. His thyroid levels were off otherwise I may have fought her over it, but instead I am back to crushing the pill and chasing the mixture of water/med all over the bowl with a syringe to make sure I have drawn it all up. I love me a compounded med with a syringe top bottle! Sigh...She is waiting on his medical records to come up from Dallas to proceed with the Growth hormone/hypoglycemia testing, but for now is sticking to the strict no fasting orders for him.
GI: This could be it's own post so I'll try to summarize.He ordered a tube study, barium enema, upper GI, endoscopy and weekly/monthly lab work. The tube study showed his GJ perfectly placed (in case the bile/formula reflux from the J into the G was due to the tube being out of place). Sorry guy - no easy answer there. The barium enema showed no microcolon - again no answer. Yesterday Tomas had the upper GI with small bowel follow through. The radiologist puts barium into the stomach and then takes x-rays at timed intervals afterwards to see how quickly it moves through the GI tract into the colon. After 5 hours it was still in his stomach. Score! Hoping for some good info to come out of that one.
ENT: He ordered a sleep study, swallow study, laryngoscopy, and bronchoscopy. He doesn't think Tomas' desats are due to true obstructive sleep apnea, he wants to look for a laryngeal cleft. Also, one of Tomas' ear tubes is out so the dr. will clean out both ears while he is under, do the hearing test, and then replace them. I'm curious to see where his hearing is without the tubes in. He did tell me that any vagus nerve damage that is causing the GI issues would not be affecting Tomas' swallow. He still has so much difficulty swallowing without aspirating. That's where the cleft comes in and possibly that right subclavian artery that is out of place.
Hem/Onc: She just reminded me of the risk of TMD babies transistioning to AML by the age of 5 (Tomas has enough friends who have gone through this that it is always in my mind). His neutropenia requires more testing so she tagged on to the GI's lab orders. Since his platelet count is usually normal and his platelet function is always normal she feels like the petechia are most likely due to weak blood vessels. Not sure what the means for Tomas. I was absorbing too much other info and will have to ask at the next visit. At the end of the appt. she brought in her nurse to get blood from Tomas for labs. This is almost comical. He has a port - it should be a breeze to get blood. But blood return is not my friend. The nurse was fantastic; she hooked the syringe up to his needle but alas, no blood return. Then she started cajoling Tomas into making sounds which would cause him to inhale and exhale deeper giving her just a drop of blood every time he did. For about 15 minutes she worked with him to get enough blood so she didn't have to stick him. The doctor was undecided about what to do about the port. Since we could at some point get blood from it, the problem could just be positional with how the needle is placed in the port, but because this happens even after needle changes, she also wants to do an x-ray and dye study to see if that is definitely the case. I'm a little aprehensive about that because it could mean surgery to replace the port. Not a huge surgery, but still.
Tomas is doing ok. A couble of small antics but on the whole the TPN is working and keeping him home. He was dehydrated on last weeks labs due to an increase in G drainage, so the volume on his tpn was increased. A few months ago that would have meant an admit, but now he is stable and hydrated, allowing me to not stress too much over the continuing GI issues.
Our belongings have been trucked up from storage in TX only to be moved to a storage in CT; just waiting on an ok to unload. My husband may have an aneurysm soon, he took off work last Fri. to do a walk through on the house. It only took the morning but he was so stressed he just took a long weekend. That NEVER happens. Having a super stressed out husband hanging around you for 2 days, let alone 3, is the opposite of fun.
Luckily, I have an amazing friend here who is keeping me sane, and letting me use her home as needed when our space gets too cramped. I also met some moms from our new homeschool group last night and everyone was very friendly, so super glad about that.
I knew moving to NY and starting over with new doctors would mean lots of tests for Tomas. He has seen endocrinology, GI, ENT, and Hem/Onc so far.
The endocrine doctor took away his lovely synthroid compund because she says it is not stable and they don't use it at the hospital. His thyroid levels were off otherwise I may have fought her over it, but instead I am back to crushing the pill and chasing the mixture of water/med all over the bowl with a syringe to make sure I have drawn it all up. I love me a compounded med with a syringe top bottle! Sigh...She is waiting on his medical records to come up from Dallas to proceed with the Growth hormone/hypoglycemia testing, but for now is sticking to the strict no fasting orders for him.
GI: This could be it's own post so I'll try to summarize.He ordered a tube study, barium enema, upper GI, endoscopy and weekly/monthly lab work. The tube study showed his GJ perfectly placed (in case the bile/formula reflux from the J into the G was due to the tube being out of place). Sorry guy - no easy answer there. The barium enema showed no microcolon - again no answer. Yesterday Tomas had the upper GI with small bowel follow through. The radiologist puts barium into the stomach and then takes x-rays at timed intervals afterwards to see how quickly it moves through the GI tract into the colon. After 5 hours it was still in his stomach. Score! Hoping for some good info to come out of that one.
ENT: He ordered a sleep study, swallow study, laryngoscopy, and bronchoscopy. He doesn't think Tomas' desats are due to true obstructive sleep apnea, he wants to look for a laryngeal cleft. Also, one of Tomas' ear tubes is out so the dr. will clean out both ears while he is under, do the hearing test, and then replace them. I'm curious to see where his hearing is without the tubes in. He did tell me that any vagus nerve damage that is causing the GI issues would not be affecting Tomas' swallow. He still has so much difficulty swallowing without aspirating. That's where the cleft comes in and possibly that right subclavian artery that is out of place.
Hem/Onc: She just reminded me of the risk of TMD babies transistioning to AML by the age of 5 (Tomas has enough friends who have gone through this that it is always in my mind). His neutropenia requires more testing so she tagged on to the GI's lab orders. Since his platelet count is usually normal and his platelet function is always normal she feels like the petechia are most likely due to weak blood vessels. Not sure what the means for Tomas. I was absorbing too much other info and will have to ask at the next visit. At the end of the appt. she brought in her nurse to get blood from Tomas for labs. This is almost comical. He has a port - it should be a breeze to get blood. But blood return is not my friend. The nurse was fantastic; she hooked the syringe up to his needle but alas, no blood return. Then she started cajoling Tomas into making sounds which would cause him to inhale and exhale deeper giving her just a drop of blood every time he did. For about 15 minutes she worked with him to get enough blood so she didn't have to stick him. The doctor was undecided about what to do about the port. Since we could at some point get blood from it, the problem could just be positional with how the needle is placed in the port, but because this happens even after needle changes, she also wants to do an x-ray and dye study to see if that is definitely the case. I'm a little aprehensive about that because it could mean surgery to replace the port. Not a huge surgery, but still.
Tomas is doing ok. A couble of small antics but on the whole the TPN is working and keeping him home. He was dehydrated on last weeks labs due to an increase in G drainage, so the volume on his tpn was increased. A few months ago that would have meant an admit, but now he is stable and hydrated, allowing me to not stress too much over the continuing GI issues.
Saturday, June 25, 2011
My next job will be
An air traffic controller at Dulles International Airport, and it will feel like being on spring break.
The logistical mountain that needed to be coordinated and moved to get Tomas to New York was overwhelming.
BUT, we are here, it is done, and it went off without a hitch. He saw his new pediatrician the day after we got here, that pedi drew the TPN labs, and the new infusion DME has been in contact with the dr. and me, a nurse from the new skilled nursing company came out this morning and changed his port needle, which was overnighted to my hotel room by the old infusion DME along with enough TPN to get us through the new lab results and new written orders from the new doctor. Tomas' first specialist appointment is on July 7th, with 10 more to follow in the next 3 months.
I am so grateful for the TPN because I am pretty sure he is in the middle of another shutdown, and is barely tolerating the tiny drip of J enteral feeds we have running. I am certain he would be in the hospital, but instead he is here with his family and gaining weight every day. It is a gift, short and simple.
We drove here, it took 4 days because we didn't push the kids to go 10+ hours a day. I loved watching my girls faces as the hot, drought ridden, cracked earth landscape around north TX gave way to the green rolling hills of TN. Then the woods got thicker and the people got sparser as we headed through northern VA, NJ and finally into NY. I grew up here, but my kids have only known the flat pancake that is FL, and the small hills of TX. Climbing the large hills of the Hudson Valley and having them look out the car window and look DOWN on the villages below took their breath away, and that gave me such pleasure, and such admiration for the creator and the variety he bestowed upon us. In all things there is this incredible variety, a newness waiting for the next newcomer to discover.
I wonder what this new place will make of the variety my family brings with us. The local newspaper had an ad for an OB/GYN office that headlined with "Genetic Counseling; Nuchal Translucency Screening; Choronic Villus Sampling; and Genetic Amniocentisis". What will this tiny part of the world make of my boy who "failed" all these tests? We left the relative safety of a very conservative area and once again God is holding His hand tight to His chest.
How much more I would prefer to offer my faith up as a single gift, on a silver platter, one time, and be done with it. That is not my path though, my path is the Hansel and Gretel path. The one where God leaves little breadcrumbs for me to find my way, and while I am aware when I find a large enough crumb to propel me forward I shudder at the disheartening thought of how many smaller ones I have missed. So I wait, because God knows I am dense, and stubborn, and prideful, and He knows that every once in a while I need a whole stinkin' loaf of bread to find my way.
The logistical mountain that needed to be coordinated and moved to get Tomas to New York was overwhelming.
BUT, we are here, it is done, and it went off without a hitch. He saw his new pediatrician the day after we got here, that pedi drew the TPN labs, and the new infusion DME has been in contact with the dr. and me, a nurse from the new skilled nursing company came out this morning and changed his port needle, which was overnighted to my hotel room by the old infusion DME along with enough TPN to get us through the new lab results and new written orders from the new doctor. Tomas' first specialist appointment is on July 7th, with 10 more to follow in the next 3 months.
I am so grateful for the TPN because I am pretty sure he is in the middle of another shutdown, and is barely tolerating the tiny drip of J enteral feeds we have running. I am certain he would be in the hospital, but instead he is here with his family and gaining weight every day. It is a gift, short and simple.
We drove here, it took 4 days because we didn't push the kids to go 10+ hours a day. I loved watching my girls faces as the hot, drought ridden, cracked earth landscape around north TX gave way to the green rolling hills of TN. Then the woods got thicker and the people got sparser as we headed through northern VA, NJ and finally into NY. I grew up here, but my kids have only known the flat pancake that is FL, and the small hills of TX. Climbing the large hills of the Hudson Valley and having them look out the car window and look DOWN on the villages below took their breath away, and that gave me such pleasure, and such admiration for the creator and the variety he bestowed upon us. In all things there is this incredible variety, a newness waiting for the next newcomer to discover.
I wonder what this new place will make of the variety my family brings with us. The local newspaper had an ad for an OB/GYN office that headlined with "Genetic Counseling; Nuchal Translucency Screening; Choronic Villus Sampling; and Genetic Amniocentisis". What will this tiny part of the world make of my boy who "failed" all these tests? We left the relative safety of a very conservative area and once again God is holding His hand tight to His chest.
How much more I would prefer to offer my faith up as a single gift, on a silver platter, one time, and be done with it. That is not my path though, my path is the Hansel and Gretel path. The one where God leaves little breadcrumbs for me to find my way, and while I am aware when I find a large enough crumb to propel me forward I shudder at the disheartening thought of how many smaller ones I have missed. So I wait, because God knows I am dense, and stubborn, and prideful, and He knows that every once in a while I need a whole stinkin' loaf of bread to find my way.
Sunday, June 12, 2011
The Long Hello
I have been debating about whether to try to catch up on the blog or just let it go, but in the end I decided I missed it too much. That leaves me with a tremendous amount of catch up, and trying to sum up the last few months in a few short paragraphs.
Tomas began a downward GI slide in March. He was not tolerating his J feeds and would retch and back arch and stomach crunch and cry to the point where he needed to be hospitalized in order to run IV fluids and give his gut a break.
The episodes became closer and closer together and by early June he had been hospitalized 6 times and spent a total of 45 days in the hospital. It got to the point he couldn't be home for even a week. As soon as we started his feeds back up within the next few days the same things started happening.
Finally, in late May the doctors switched gears from trying to figure out what was wrong (I'll get to that in a minute) to trying to find a way for me to keep him home. An IVAD (he got the under the skin kind) and I was given protocol on when to switch from J feeds to IV fluids and how long he could stay on fluids before he would need to be admitted. That worked for about 2 weeks, and then I couldn't get him off fluids. His gut just didn't want to work. Plus, he continued to lose weight at an alarming rate. He went from 25lbs 13oz to 22lbs 2oz in 3 months.
After a roundtable discussion with Tomas' GI, pediatrician, nutritionist, and myself, the decision was made to place him on TPN. So one more trip to the hospital, another week long stay, another protocol for TPN labs and weight checks, and he has been home for 10 days now. Doesn't seem like much but it is the longest he has been home since early April.
It is going well, a few ER runs for clotted lines, and phone calls for pump issues, but he is gaining weight, and looks so much healthier. He still has a very slow J feed running to prevent cell atrophy and to help mitigate the negative health issues that come with prolonged TPN usage.
Well, what the heck is wrong with him anyway? In all the hospital stays he has had a different attending GI every time (they do 2 week rotations at our children's hospital). Each one had a different theory, the first was he had a metabolic disorder, but metabolics said no. The second was he was on the wrong formula, 3 formulas later and that was kicked aside. Another thought he needed different motility agents, after 4 different meds that was given up. The running theory at this point is that his Vagus nerve was damaged during the last fundo surgery and that the pacemaker area of the stomach has been affected. That area controls the impulse to contract the stomach as well as the small intestines. If that turns out to be the case then there are not many options available, keep him on TPN, or have a stomach pacemaker implanted. There are only a few doctors in the country that do it and so far the youngest patient I've found is 5. So we have a ways to go for that. But first someone would need to prove that is what's wrong. The medical community in Dallas is unable to do that. They are out of tests, and ideas, and are just working in a palliative care mode. Good thing we are moving to NY.
Yes, we sold our house in only 14 days. I was in the hospital when the offer came in. We have a house picked out in NY that is beautiful and are waiting to get to contract on it. The movers come tomorrow. They will be packing for 3 days and loading for 2, and on Friday we say goodbye to this house! It happened so fast we are still spinning. A few kinks need to be worked out with both sets of contracts but I am keeping faith it will all work out. The logistics of moving Tomas have qualified me to be an air traffic controller x2. That is it in a nutshell. Actually, that is definitely the shelled out version. In the future look for the fluff. An ambulance ride, a nurse's tale, and a shopping cart are all coming to mind at the moment.
If you are still out there and still reading :God bless.
Tomas began a downward GI slide in March. He was not tolerating his J feeds and would retch and back arch and stomach crunch and cry to the point where he needed to be hospitalized in order to run IV fluids and give his gut a break.
The episodes became closer and closer together and by early June he had been hospitalized 6 times and spent a total of 45 days in the hospital. It got to the point he couldn't be home for even a week. As soon as we started his feeds back up within the next few days the same things started happening.
Finally, in late May the doctors switched gears from trying to figure out what was wrong (I'll get to that in a minute) to trying to find a way for me to keep him home. An IVAD (he got the under the skin kind) and I was given protocol on when to switch from J feeds to IV fluids and how long he could stay on fluids before he would need to be admitted. That worked for about 2 weeks, and then I couldn't get him off fluids. His gut just didn't want to work. Plus, he continued to lose weight at an alarming rate. He went from 25lbs 13oz to 22lbs 2oz in 3 months.
After a roundtable discussion with Tomas' GI, pediatrician, nutritionist, and myself, the decision was made to place him on TPN. So one more trip to the hospital, another week long stay, another protocol for TPN labs and weight checks, and he has been home for 10 days now. Doesn't seem like much but it is the longest he has been home since early April.
It is going well, a few ER runs for clotted lines, and phone calls for pump issues, but he is gaining weight, and looks so much healthier. He still has a very slow J feed running to prevent cell atrophy and to help mitigate the negative health issues that come with prolonged TPN usage.
Well, what the heck is wrong with him anyway? In all the hospital stays he has had a different attending GI every time (they do 2 week rotations at our children's hospital). Each one had a different theory, the first was he had a metabolic disorder, but metabolics said no. The second was he was on the wrong formula, 3 formulas later and that was kicked aside. Another thought he needed different motility agents, after 4 different meds that was given up. The running theory at this point is that his Vagus nerve was damaged during the last fundo surgery and that the pacemaker area of the stomach has been affected. That area controls the impulse to contract the stomach as well as the small intestines. If that turns out to be the case then there are not many options available, keep him on TPN, or have a stomach pacemaker implanted. There are only a few doctors in the country that do it and so far the youngest patient I've found is 5. So we have a ways to go for that. But first someone would need to prove that is what's wrong. The medical community in Dallas is unable to do that. They are out of tests, and ideas, and are just working in a palliative care mode. Good thing we are moving to NY.
Yes, we sold our house in only 14 days. I was in the hospital when the offer came in. We have a house picked out in NY that is beautiful and are waiting to get to contract on it. The movers come tomorrow. They will be packing for 3 days and loading for 2, and on Friday we say goodbye to this house! It happened so fast we are still spinning. A few kinks need to be worked out with both sets of contracts but I am keeping faith it will all work out. The logistics of moving Tomas have qualified me to be an air traffic controller x2. That is it in a nutshell. Actually, that is definitely the shelled out version. In the future look for the fluff. An ambulance ride, a nurse's tale, and a shopping cart are all coming to mind at the moment.
If you are still out there and still reading :God bless.
Friday, April 15, 2011
Stuck in Traffic
We had Tomas' appt. with the new GI and it was a good one. He is a man who likes the puzzle kids, and he and Tomas' oncologist share a few of the more challenging kids at the hospital, so I really think it will be a good team for him.
Another huge plus is that this GI nurse actually calls you back, and has been tremendous at keeping contact going between the doctor and myself during the last week. Tomas is having slow to no motility again and I and his home health nurse have been sidewinding our way through trying to keep him home. It has always been, "Well, do what you can for him at home, and when you can no longer feed him enough to keep his sugars stable or he gets dehydrated bring him in." So frustrating.
He had 4 fabulous days last week where he had zero bile output and he tolerated his feeds great. That ended on Sunday and has been progressively sliding downhill, to the point where yesterday was an on the fence kind of day. Problem is, Mike is gone, and I KNOW if I bring him to ER he will get admitted. So we struggle on here, hoping that the next day is better than the last. As of right now he hasn't hit his calorie goal since Sunday, but I am doing my best to use a mix of pedialyte and formula to keep his GI tract running. Oh, and I need to add that the little stinker is now smart enough and coordinated enough to yank off his extension set. He knows it hurts when he eats, so he just wiggles and wiggles it until it comes loose. He has managed to free himself a few times now and make giant messes!
He had a sleep study done on Friday and I should have the results at the next pulm appt. I hope they were able to get some good data as I don't really know how well people sleep at those things. I did find my miracle - make your baby sleep - cure though. It is a farrell bag. It hooks up to his feeding set and is a way for the stomach (or in his case intestines) to release gas pressure. Basically, the bag is an outlet for the tube set, if the pressure inside is greater than the pressure in the bag, then the formula will flow up into the farrell bag until the pressure equalizes, then slowly drips back in. We tried it when he was an infant but it has so much tubing he was never strong enough to push it all the way through. Now, it is amazing to see the difference in how he sleeps at night. If I leave the bag open he sleeps like a normal kid. Falls asleep, moves a bit in the night, but stays asleep without a sound. The problem is that he is not getting all his food, so if too much starts to back into the bag I have to clamp it shut so he can eat and not become hypoglycemic. He does not like this and within 30 minutes of the clamp is moaning and whining in his sleep just like before. So we do the farrell dance through the night, but all in all, he is sleeping so much better.
Due to all the bile output, we are having to monitor his electrolytes closely. Last Monday his sodium/potassium/chloride were low, and they were still low on Wednesday. This Tuesday we had them drawn again and the only one still low was potassium. This was after the good 4 days and before yesterday though so I am thinking his next check (Monday) won't be as pretty. Yesterday was tough. The girls had a field trip.
It sounds so simple doesn't it? It's not, and it has nothing to with the amount of gear or prep involved. That is not it at all. It is the absolute lack of consistency in Tomas' state of being. It is never knowing if he will make it through. I can't say if it is the GI problems or the hypoglycemia that are more the culprit here. If he could eat fine then we wouldn't have issues, but then again, if he wasn't so severely hypoglycemic, it wouldn't be as dire a situation when he is not tolerating his feeds. You and I, and Victoria and Olivia, and most other people on the planet can skip a meal. You eat breakfast, and for whatever reason something comes up and you miss lunch. Before you know it, you look at your watch and it has been 8 hours since you ate. Maybe you had breakfast at 7, and now it's 3 and you're starving. You eat and all is well. Not so. He can't do it, if he were to go 8 hours or 7 or 6 or even 5 without food there is a very, very good chance he'd be in a coma. It is the single most difficult thing we are dealing with right now because it means he HAS to go to the hospital when he can't eat.
Back to yesterday, It started out pretty darned good. It was a progressive field trip through historical markers in a nearby town. The first two stops were perfect, he was happy and playful and just regular old Tomas. It was early, and not time for his feeds to start. The third, and final stop was the long one, were we would spend the rest of the day, so his nurse got him all hooked up and everything running and sat with him while I bounced back and forth between the two girls' groups. A little into it things went downhill and I was calling the doctor to tell him if Tomas didn't wake up from his nap better then when he went to sleep I would be bringing him into Dallas.
Their plan was to try to get him through to his already scheduled surgery appt. in just a few hours and see if the surgeon had any ideas on what was going on with the bile output. Tomas did wake up a bit better and we did make it to the appt. Unfortunately, the surgeon didn't have anything to add, and it was more of the same;. bring him to ER when it gets bad enough. I asked if there were any tests we could run to see what was causing the bile reflux, or if it could be fixed with any different motility meds. Nope and nope. Just a long talk on how dangerous it would be to do any kind of surgery on his bowels given what they had already been through, and to call him any time. Thanks; and we walked out just as close to an admitting as we went in.
As we were leaving the hospital pavillion I thought I'd pop into the blood disorders clinic and see if his hematologist was there. I've been mildly worried since Tomas' pathology report came in from his last bone marrow biopsy; not too much because I figured his doctor would've called if anything terrible was going on. But I still had some questions and had been playing phone tag with the dr. for a few days. Luckily, she was in and close to finishing so we hung out in the waiting room for a few minutes. She came out, saw his bile drainage, and pretty much became as stressed out as I was over the whole thing. She spent a very long time talking with me and going over EVERYTHING that has been happening with Tomas in the last month. She wants a CT of the abdomen and brain (for unrelated autonomic issues). When we left she was going to call the GI and then call me back today.
That means that within an hours time I had two wildly different opinions on what could be done for my son and on how to proceed with his care and maintenance. This is the stuff that drives special needs' mommies insane! Truely, who do you listen to? In this case it was easy, since it was do nothing and hope it gets better or let's do a CT and see what we can see. But it is not always that clear cut a choice.
The bright and shining spot not to be lost in the mist of all this GI junk is that his bone marrow was normal! Even though he has blasts they are the "friendly" kind and she is not concerened at all by his report. That made yesterday get a whole lot better.
Another huge plus is that this GI nurse actually calls you back, and has been tremendous at keeping contact going between the doctor and myself during the last week. Tomas is having slow to no motility again and I and his home health nurse have been sidewinding our way through trying to keep him home. It has always been, "Well, do what you can for him at home, and when you can no longer feed him enough to keep his sugars stable or he gets dehydrated bring him in." So frustrating.
He had 4 fabulous days last week where he had zero bile output and he tolerated his feeds great. That ended on Sunday and has been progressively sliding downhill, to the point where yesterday was an on the fence kind of day. Problem is, Mike is gone, and I KNOW if I bring him to ER he will get admitted. So we struggle on here, hoping that the next day is better than the last. As of right now he hasn't hit his calorie goal since Sunday, but I am doing my best to use a mix of pedialyte and formula to keep his GI tract running. Oh, and I need to add that the little stinker is now smart enough and coordinated enough to yank off his extension set. He knows it hurts when he eats, so he just wiggles and wiggles it until it comes loose. He has managed to free himself a few times now and make giant messes!
He had a sleep study done on Friday and I should have the results at the next pulm appt. I hope they were able to get some good data as I don't really know how well people sleep at those things. I did find my miracle - make your baby sleep - cure though. It is a farrell bag. It hooks up to his feeding set and is a way for the stomach (or in his case intestines) to release gas pressure. Basically, the bag is an outlet for the tube set, if the pressure inside is greater than the pressure in the bag, then the formula will flow up into the farrell bag until the pressure equalizes, then slowly drips back in. We tried it when he was an infant but it has so much tubing he was never strong enough to push it all the way through. Now, it is amazing to see the difference in how he sleeps at night. If I leave the bag open he sleeps like a normal kid. Falls asleep, moves a bit in the night, but stays asleep without a sound. The problem is that he is not getting all his food, so if too much starts to back into the bag I have to clamp it shut so he can eat and not become hypoglycemic. He does not like this and within 30 minutes of the clamp is moaning and whining in his sleep just like before. So we do the farrell dance through the night, but all in all, he is sleeping so much better.
Due to all the bile output, we are having to monitor his electrolytes closely. Last Monday his sodium/potassium/chloride were low, and they were still low on Wednesday. This Tuesday we had them drawn again and the only one still low was potassium. This was after the good 4 days and before yesterday though so I am thinking his next check (Monday) won't be as pretty. Yesterday was tough. The girls had a field trip.
It sounds so simple doesn't it? It's not, and it has nothing to with the amount of gear or prep involved. That is not it at all. It is the absolute lack of consistency in Tomas' state of being. It is never knowing if he will make it through. I can't say if it is the GI problems or the hypoglycemia that are more the culprit here. If he could eat fine then we wouldn't have issues, but then again, if he wasn't so severely hypoglycemic, it wouldn't be as dire a situation when he is not tolerating his feeds. You and I, and Victoria and Olivia, and most other people on the planet can skip a meal. You eat breakfast, and for whatever reason something comes up and you miss lunch. Before you know it, you look at your watch and it has been 8 hours since you ate. Maybe you had breakfast at 7, and now it's 3 and you're starving. You eat and all is well. Not so. He can't do it, if he were to go 8 hours or 7 or 6 or even 5 without food there is a very, very good chance he'd be in a coma. It is the single most difficult thing we are dealing with right now because it means he HAS to go to the hospital when he can't eat.
Back to yesterday, It started out pretty darned good. It was a progressive field trip through historical markers in a nearby town. The first two stops were perfect, he was happy and playful and just regular old Tomas. It was early, and not time for his feeds to start. The third, and final stop was the long one, were we would spend the rest of the day, so his nurse got him all hooked up and everything running and sat with him while I bounced back and forth between the two girls' groups. A little into it things went downhill and I was calling the doctor to tell him if Tomas didn't wake up from his nap better then when he went to sleep I would be bringing him into Dallas.
Their plan was to try to get him through to his already scheduled surgery appt. in just a few hours and see if the surgeon had any ideas on what was going on with the bile output. Tomas did wake up a bit better and we did make it to the appt. Unfortunately, the surgeon didn't have anything to add, and it was more of the same;. bring him to ER when it gets bad enough. I asked if there were any tests we could run to see what was causing the bile reflux, or if it could be fixed with any different motility meds. Nope and nope. Just a long talk on how dangerous it would be to do any kind of surgery on his bowels given what they had already been through, and to call him any time. Thanks; and we walked out just as close to an admitting as we went in.
As we were leaving the hospital pavillion I thought I'd pop into the blood disorders clinic and see if his hematologist was there. I've been mildly worried since Tomas' pathology report came in from his last bone marrow biopsy; not too much because I figured his doctor would've called if anything terrible was going on. But I still had some questions and had been playing phone tag with the dr. for a few days. Luckily, she was in and close to finishing so we hung out in the waiting room for a few minutes. She came out, saw his bile drainage, and pretty much became as stressed out as I was over the whole thing. She spent a very long time talking with me and going over EVERYTHING that has been happening with Tomas in the last month. She wants a CT of the abdomen and brain (for unrelated autonomic issues). When we left she was going to call the GI and then call me back today.
That means that within an hours time I had two wildly different opinions on what could be done for my son and on how to proceed with his care and maintenance. This is the stuff that drives special needs' mommies insane! Truely, who do you listen to? In this case it was easy, since it was do nothing and hope it gets better or let's do a CT and see what we can see. But it is not always that clear cut a choice.
The bright and shining spot not to be lost in the mist of all this GI junk is that his bone marrow was normal! Even though he has blasts they are the "friendly" kind and she is not concerened at all by his report. That made yesterday get a whole lot better.
Last week when Tomas and I were driving home form the new GI appt. it was rush hour and we were stuck in traffic the whole way out of Dallas. It very much struck me that caring for him and navigating the medical world is very much the same. Slowly, so so slowly, we trudge forward. Every once in a while we switch lanes hoping to move at a faster pace, all the while watching those around us do the same exact thing. But the most amazing thing happened while I was stuck mentally and physically in traffic on Wednesday. Tomas happened. He was fascinated by the cars all around him. Every time one would pass by the window he would kick and scream with a JOY that almost popped him out of his carseat; and I laughed. Right there in the middle of six lanes of traffic moving at a snails pace, we laughed and laughed and laughed. A tuck would roll up and he would explode in shouts of sheer delight. Oh my word how much fun we had. And thats it really, that's the big fat secret to our lives. He brings us joy beyond measure.
Tuesday, April 5, 2011
Where the heck have I been?
Well, first off, thanks for asking. Makes a girl feel loved, lol.
Let's see. Mostly doctor's appts, as usual. Only now we have the whole buying/selling/moving thing thrown in. My husband came home on Sat. and we have been working hard to get the house ready to list. Sprucing up the outside and shoveling out my middle child's bedroom come to mind. Outside is done, bedroom is still a work in progress. We are trying to list the house this week though so hope to get it done soon.
Of course, Tomas has not made this easy. He got out of the hospital on the 18th and started running one of his cyclic fevers on the 23rd, prefectly timed so that I would have to cancel his swallow study (I think he knew).
A pulmonolgy appt. for all 3 brought 7 new tests smattered among the little darlings (with bad lung genes).
Last week Tomas' nurse fell and sprained/tore tendons in her ankle. Replacement nurse came the next day, but then missed the next two due to a doctor's appt. and an ER visit on her part for a severe sinus infection. Do I want another replacement nurse? Um, no thanks, they are dropping like flies. Regular nurse will be back next week.
This week brought a pedi visit for that pesky fever. It doesn't get over 100.2, but has been around for almost 2 weeks now. A failed cath attempt and blood draw attempt brought a trip to the children's hospital for round two of torture the baby, but it worked. Still waiting on culture results.
Today was a waste of time and money at a dermatology appt. for him. Only thing worth even mentioning is that Tomas' cold sore isn't your typical cold sore (not really worth mentioning as I could have had the doctor pay me to tell him that) and is the kind you see in chronically ill kids. Smack me on the forehead, I didn't see that one coming.
Tomorrow brings a semi-big appt. with a new GI. It is the attending from his last hospital stay. The doctor was fabulous at the hospital and I hope that trend continues as Tomas has been draining up to 6 oz of bile day from his stomach. His latest labs showed low electrolytes because of it. I have been giving him pedialyte but I can't replace 6 oz on top of what volume he is already getting for his feeds.
Thursday is a surgery consult to discuss the bile output as well. There is a chance that some stump of gallbladder remnant or some other weird (and rare - make me laugh) post gallbladder removal thing is going on with his bile.
Friday is a sleep study. Sweet, sweet sleep. Some good data from this study would be awesome, but even more awesomer would be a way to help him sleep better!
Now, of course my life isn't all medical. Well ok it is, but it doesn't really matter because the living still happens. Sleep not so much, but living - hell yeah!
Let's see. Mostly doctor's appts, as usual. Only now we have the whole buying/selling/moving thing thrown in. My husband came home on Sat. and we have been working hard to get the house ready to list. Sprucing up the outside and shoveling out my middle child's bedroom come to mind. Outside is done, bedroom is still a work in progress. We are trying to list the house this week though so hope to get it done soon.
Of course, Tomas has not made this easy. He got out of the hospital on the 18th and started running one of his cyclic fevers on the 23rd, prefectly timed so that I would have to cancel his swallow study (I think he knew).
A pulmonolgy appt. for all 3 brought 7 new tests smattered among the little darlings (with bad lung genes).
Last week Tomas' nurse fell and sprained/tore tendons in her ankle. Replacement nurse came the next day, but then missed the next two due to a doctor's appt. and an ER visit on her part for a severe sinus infection. Do I want another replacement nurse? Um, no thanks, they are dropping like flies. Regular nurse will be back next week.
This week brought a pedi visit for that pesky fever. It doesn't get over 100.2, but has been around for almost 2 weeks now. A failed cath attempt and blood draw attempt brought a trip to the children's hospital for round two of torture the baby, but it worked. Still waiting on culture results.
Today was a waste of time and money at a dermatology appt. for him. Only thing worth even mentioning is that Tomas' cold sore isn't your typical cold sore (not really worth mentioning as I could have had the doctor pay me to tell him that) and is the kind you see in chronically ill kids. Smack me on the forehead, I didn't see that one coming.
Tomorrow brings a semi-big appt. with a new GI. It is the attending from his last hospital stay. The doctor was fabulous at the hospital and I hope that trend continues as Tomas has been draining up to 6 oz of bile day from his stomach. His latest labs showed low electrolytes because of it. I have been giving him pedialyte but I can't replace 6 oz on top of what volume he is already getting for his feeds.
Thursday is a surgery consult to discuss the bile output as well. There is a chance that some stump of gallbladder remnant or some other weird (and rare - make me laugh) post gallbladder removal thing is going on with his bile.
Friday is a sleep study. Sweet, sweet sleep. Some good data from this study would be awesome, but even more awesomer would be a way to help him sleep better!
Now, of course my life isn't all medical. Well ok it is, but it doesn't really matter because the living still happens. Sleep not so much, but living - hell yeah!
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