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.
Saturday, June 25, 2011
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!
Tuesday, March 22, 2011
Discharge catch up
Tomas was discharged on Thursday. It was a crazy scramble because I had to leave to pick up the girls from their Spring Break day camp, and the hospital staff was trying to make it easy for me so I didn't have to come back and get Tomas. It was just crazy and I still ended up being 10 minutes late for pick up. Almost enough stress to make me want to get them a cell phone. ALMOST.
He has been doing well. Not great and not just ok, somewhere inbetween. Every once in a while he acts like he is in pain, and this afternoon he ran a fever. It broke by late evening, and I hope that is that. Unfortunately it means I had to cancel our swallow study for tomorrow ( I had to call and cancel before closing and that was before the fever broke), so who knows when that will get rescheduled for.
All 3 have a pulmonary appt. on Friday and I am so anxious to go over Tomas and Olivia's plan of care. Both need adjustments, so I'll be glad for that appt.
I got THE phone call from the metabolics clinic and his appt. is on April 21st. I'm thrilled it is not 4 months away! I also heard back from the endocrine clinic on his growth hormone deficiency and they are going to do some growth vector chart plotting or something like that. Not really sure how it is different from regular growth charts, but I guess I'll find out. Turns out the growth hormone he is deficient in is not just for stature (in which he is doing great), but also for muscle development (in which he is not doing great). Very interesting...
Still waiting on the call back from the GI clinic, and Tomas still has blood in his stomach. Such a chronic issue, I'd really like to see it get fixed.
I am beginning the logistical nightmare of The Move but I will have help. The absolute best part is my husband's company pays for the movers to pack the house for us. We've had it done many times and it is awesome. They come in like a swarm of bees and in 2 days have your entire house packed. He seriously told me this time we should pack ourselves. I seriously told him I didn't think so!
He has been doing well. Not great and not just ok, somewhere inbetween. Every once in a while he acts like he is in pain, and this afternoon he ran a fever. It broke by late evening, and I hope that is that. Unfortunately it means I had to cancel our swallow study for tomorrow ( I had to call and cancel before closing and that was before the fever broke), so who knows when that will get rescheduled for.
All 3 have a pulmonary appt. on Friday and I am so anxious to go over Tomas and Olivia's plan of care. Both need adjustments, so I'll be glad for that appt.
I got THE phone call from the metabolics clinic and his appt. is on April 21st. I'm thrilled it is not 4 months away! I also heard back from the endocrine clinic on his growth hormone deficiency and they are going to do some growth vector chart plotting or something like that. Not really sure how it is different from regular growth charts, but I guess I'll find out. Turns out the growth hormone he is deficient in is not just for stature (in which he is doing great), but also for muscle development (in which he is not doing great). Very interesting...
Still waiting on the call back from the GI clinic, and Tomas still has blood in his stomach. Such a chronic issue, I'd really like to see it get fixed.
I am beginning the logistical nightmare of The Move but I will have help. The absolute best part is my husband's company pays for the movers to pack the house for us. We've had it done many times and it is awesome. They come in like a swarm of bees and in 2 days have your entire house packed. He seriously told me this time we should pack ourselves. I seriously told him I didn't think so!
Wednesday, March 16, 2011
Day 6
Tomas is doing well. After several start-ups with feeds that increased too fast we are going the really slow approach. So far it is working, but it means an extra few days in here. The doctors (and there are lots) have all rounded. Tomas' stomach biopsy came back with chronic gastritis, and the liver biopsy came back with inflammation around the bile ducts. As usual it doesn't point them to any on diagnosis or direction, but this time around he is being followed by an incredibly caring GI doc. He said Tomas will go home with an appt. from metabolics (by-passing a possible 4 month wait), and he is going to call and/or email all his other doctors to get everyone on the same page, and that the time has come to stop the specialist approach and start managing him as a team. He will also be going home on a new medicine to try to keep his motility going and prevent any further psuedo obstructions. It has a very hit and miss reputation, so let's hope for a hit!
As you all know my husband started a new job on the 14th. It has been incredibly difficult, for him and for me. He was so torn when it was time to leave. I know he wanted to stay, and I know he needed to go. But God has covered us, and surrounded us with people who treat their neighbor as they treat themselves. In particular two people have helped a tremendous amount. Tomas' nurse came and stayed with him the first night Mike had to leave. She came off the clock and left her two small boys overnight to stay so Tomas would not be alone. It turned out to be his roughest night and she had to make a lot of decisions in caring for him, and she did wonderful. The next day my neighbor volunteered to pick the girls up from their day camp, keep them overnight, and bring them to camp this morning. This allowed me to stay all day yesterday and last night. I have friends and family who would be here in a heartbeat if they didn't live over 1000 miles away. Then I have all of you, this community of women. You beautiful, beautiful women. You who pray for my son, who send messages of compassion, hope and good cheer.
Words like thank you and grateful are so insufficient. Whether you know it or not, the glory of the Lord shines through each and every one of you and your kindnesses; and it shines unto this tiny person whose body does not work the way it is supposed to. This tiny person who does not have periods of illness, but periods of wellness, who has fought for so long, and been poked, tested, held down, and woken up more times than I care to think about. And what does he do with this light you all shine on him?
He shines it right back:
As you all know my husband started a new job on the 14th. It has been incredibly difficult, for him and for me. He was so torn when it was time to leave. I know he wanted to stay, and I know he needed to go. But God has covered us, and surrounded us with people who treat their neighbor as they treat themselves. In particular two people have helped a tremendous amount. Tomas' nurse came and stayed with him the first night Mike had to leave. She came off the clock and left her two small boys overnight to stay so Tomas would not be alone. It turned out to be his roughest night and she had to make a lot of decisions in caring for him, and she did wonderful. The next day my neighbor volunteered to pick the girls up from their day camp, keep them overnight, and bring them to camp this morning. This allowed me to stay all day yesterday and last night. I have friends and family who would be here in a heartbeat if they didn't live over 1000 miles away. Then I have all of you, this community of women. You beautiful, beautiful women. You who pray for my son, who send messages of compassion, hope and good cheer.
Words like thank you and grateful are so insufficient. Whether you know it or not, the glory of the Lord shines through each and every one of you and your kindnesses; and it shines unto this tiny person whose body does not work the way it is supposed to. This tiny person who does not have periods of illness, but periods of wellness, who has fought for so long, and been poked, tested, held down, and woken up more times than I care to think about. And what does he do with this light you all shine on him?
He shines it right back:
Monday, March 14, 2011
Day 4
Ok- small bowel series=same torture as upper GI series. Can't anyone come up with a kinder gentler version? Sheesh. Lots of new petechiae over that one!
It showed no blockage, which is a double edged sword. A blockage meant a bowel clean out and perhaps surgery depending on what was found. So it is great that is off the table, however (HATE that word) it complicates things. Why did his GI tract shut down? It has happened in the past but because I didn't know about his ketone issue, I would just try to keep his sugars up at home. The doctor is thinking the psuedo obstruction path may be what is going on. He said the key would be to find the one "syndrome" that ties all this stuff together. Hah - just a great big "Duh!" to that one.
Anyway - we are going to try feeding him, since there is no reason he can't have food, and his bile drainage has slowed down quite a bit. He will be starting on pedialyte 10 ml/hour and then work his way up to his goal rate of 62 ml/h. If all goes well he can go home tomorrow!
That would be awesome as I have major logistic issues starting tomorrow afternoon and would have had to leave him overnight tomorrow - which would have just killed me.
So prayers he tolerates his feeds, and we get out tomorrow. Then follow up prayers for the upcoming metabolic clinic appt. for wisdom so docs can start piecing this all together!
It showed no blockage, which is a double edged sword. A blockage meant a bowel clean out and perhaps surgery depending on what was found. So it is great that is off the table, however (HATE that word) it complicates things. Why did his GI tract shut down? It has happened in the past but because I didn't know about his ketone issue, I would just try to keep his sugars up at home. The doctor is thinking the psuedo obstruction path may be what is going on. He said the key would be to find the one "syndrome" that ties all this stuff together. Hah - just a great big "Duh!" to that one.
Anyway - we are going to try feeding him, since there is no reason he can't have food, and his bile drainage has slowed down quite a bit. He will be starting on pedialyte 10 ml/hour and then work his way up to his goal rate of 62 ml/h. If all goes well he can go home tomorrow!
That would be awesome as I have major logistic issues starting tomorrow afternoon and would have had to leave him overnight tomorrow - which would have just killed me.
So prayers he tolerates his feeds, and we get out tomorrow. Then follow up prayers for the upcoming metabolic clinic appt. for wisdom so docs can start piecing this all together!
Saturday, March 12, 2011
Back in the saddle again (re-admitted)
Tomas is back in the hospital again. It has only been 6 days since we were on this floor .
Yesterday he had OT at 9, and he was tired so sitting in his high chair. About halfway through the hour he looked over at me and just started crying, always an indicator that something is big time wrong with him. You've all seen that smile.
I ran and grabbed his bile drain and hooked it up to his G port. Sure enough about an ounce of bile came out. Ok - that is not a completely unheard of occurrence. But a half hour later the same thing happened, and again a bit after that. At that point I left his bile drain open and he wanted nothing more than to sit in his seat inside his crib and watch VeggieTales. I would have loved to have been able to switch his feeds over to pedialyte, but because of the hypoglycemia, I can't. It doesn't have enough sugar to sustain him. His heart rate climbed steadily and around 4 pm he began running a fever. I had called pedi and GI earlier and they both said the same thing. If I couldn't maintain him at home to bring him to Dallas. Around 4:30 I called it.
There was a pretty scary part there in traffic when his heart rate was 180 and his O2 was 93 that I thought I waited too long, but we made it. I got rushed through triage and brought right back to an exam room. Several tests, labs, cultures, and Iv meds later, he is admitted back onto the GI floor.
He is on full gut rest and still having significant bile output through his G. Docs rounded this morning and are ordering full rest for two days and then a small bowels series on Monday morning to look for obstructions.
Tomas is quite the bit perkier today. After switching from feeding him to giving him IV fluid he slowly became his happy go lucky self again. This morning he had a brief relapse after his morning meds were pushed through to his belly and intestines, but some anti-nausea IV meds and leaving him alone after that helped a lot.
So he either has a tummy bug and can go home on Tuesday if he tolerates his feeds, or he has some kind of blockage, and can go home goodness knows when.
Fun times - but at least I have my husband to keep me amused!
Yesterday he had OT at 9, and he was tired so sitting in his high chair. About halfway through the hour he looked over at me and just started crying, always an indicator that something is big time wrong with him. You've all seen that smile.
I ran and grabbed his bile drain and hooked it up to his G port. Sure enough about an ounce of bile came out. Ok - that is not a completely unheard of occurrence. But a half hour later the same thing happened, and again a bit after that. At that point I left his bile drain open and he wanted nothing more than to sit in his seat inside his crib and watch VeggieTales. I would have loved to have been able to switch his feeds over to pedialyte, but because of the hypoglycemia, I can't. It doesn't have enough sugar to sustain him. His heart rate climbed steadily and around 4 pm he began running a fever. I had called pedi and GI earlier and they both said the same thing. If I couldn't maintain him at home to bring him to Dallas. Around 4:30 I called it.
There was a pretty scary part there in traffic when his heart rate was 180 and his O2 was 93 that I thought I waited too long, but we made it. I got rushed through triage and brought right back to an exam room. Several tests, labs, cultures, and Iv meds later, he is admitted back onto the GI floor.
He is on full gut rest and still having significant bile output through his G. Docs rounded this morning and are ordering full rest for two days and then a small bowels series on Monday morning to look for obstructions.
Tomas is quite the bit perkier today. After switching from feeding him to giving him IV fluid he slowly became his happy go lucky self again. This morning he had a brief relapse after his morning meds were pushed through to his belly and intestines, but some anti-nausea IV meds and leaving him alone after that helped a lot.
So he either has a tummy bug and can go home on Tuesday if he tolerates his feeds, or he has some kind of blockage, and can go home goodness knows when.
Fun times - but at least I have my husband to keep me amused!
Saturday, March 5, 2011
Ongoing glucose utilization in the absence of an ability to use ketones as an energy source
I'll get to the title of this post in a bit but first:
We are home! He is doing fabulous!
GI rounded on him this morning and said he had a sever case of gastritis. He is going back on Carafate, taking Mylanta 3 times a day and his Prevacid was doubled. All of that should heal his stomach in 2-3 weeks. The cause is still under investigation, and the biopsies of several sites in the stomach should help us out there. Appt. with them on Tuesday.
Hematology ordered some more bloodwork this morning and he is neutropenic again. That was a great two days without neutropenic precautions in the hospital! Appt. with them on Monday.
Endocrinology.
This is where it gets complicated. Your amazing body has 3 separate processes for getting the energy it needs. First, sugar that comes in through the food you eat provides the primary source of energy. Any excess sugar gets stored in the liver, and when liver stores are sufficient, as fat. Second, when you have burned through all readily available sugar your body releases glycogen (the stored sugar) from your liver. In a normal person these stores can last 18-36 hours. When the stores are critically low, the brain signals the liver to save what's left and move to phase three. The third phase is using fat as fuel. Your body brakes down fat into energy, particularly a by product of fat metabolism called ketones.
When you enter this phase you are in ketosis, your body uses those ketones for energy and your blood sugars stabilize. This is the state that people on the Atkins diet are aiming for. You burn through fat stores and can remain in this state as long as you have/and or consume a lot of fat. (If you are still with me - God bless you - and we trod onward!)
Tomas has two large issues going on. He is moving into ketosis way too fast, after only 2-3 hours of the second phase. Then, he does not use what ketones his body is making (the absence of an ability to use ketones as an energy source), so he keeps burning through those glycogen stores (ongoing glucose utilization) and his blood sugar keeps dropping, within 4 hours he is in a severely hypoglycemic state. His body wants that to stop ASAP so it keeps making ketones. If left untreated, his blood sugar would hit zero, he would make way too many ketones (which are an organic acid) causing his blood Ph to change, his brain would be damaged from the lack of sugar, and eventually he would die.
It is a metabolic disorder (ps - one of the causes of gastritis is a metabolic disorder) called a Ketone Utilization Defect and the doctor told me this morning it is "really really rare". She is going to do some research and then I meet with the Endo team on Wednesday. She gave me strict orders that Tomas is not to go more than 4 hours without food, it could be a very dangerous situation for him. She also told me that she is not aware of a "cure", other than to make absolutely certain the body has readily available sugar for energy.
I am thanking God that Tomas got a feeding tube at 2 days old making it a breeze to control his feeding. I am thanking God that he has a GJ tube, so when tummy bugs hit (or gastritis for that matter) and he doesn't want to eat, I can still get food into him via his intestines. If any of that should fail he would need to get to a hospital for IV glucose.
There are a few different kinds of ketone utilization defects and they are going to try to figure out which one he has, and if any dietary changes will help alleviate his issues. None of this bothers me as much as you would think. I have known for so long that something was wrong, and to have people pay attention and want to help is a huge relief.
Thanks for tagging along on this crazy roller coaster ride!
We are home! He is doing fabulous!
GI rounded on him this morning and said he had a sever case of gastritis. He is going back on Carafate, taking Mylanta 3 times a day and his Prevacid was doubled. All of that should heal his stomach in 2-3 weeks. The cause is still under investigation, and the biopsies of several sites in the stomach should help us out there. Appt. with them on Tuesday.
Hematology ordered some more bloodwork this morning and he is neutropenic again. That was a great two days without neutropenic precautions in the hospital! Appt. with them on Monday.
Endocrinology.
This is where it gets complicated. Your amazing body has 3 separate processes for getting the energy it needs. First, sugar that comes in through the food you eat provides the primary source of energy. Any excess sugar gets stored in the liver, and when liver stores are sufficient, as fat. Second, when you have burned through all readily available sugar your body releases glycogen (the stored sugar) from your liver. In a normal person these stores can last 18-36 hours. When the stores are critically low, the brain signals the liver to save what's left and move to phase three. The third phase is using fat as fuel. Your body brakes down fat into energy, particularly a by product of fat metabolism called ketones.
When you enter this phase you are in ketosis, your body uses those ketones for energy and your blood sugars stabilize. This is the state that people on the Atkins diet are aiming for. You burn through fat stores and can remain in this state as long as you have/and or consume a lot of fat. (If you are still with me - God bless you - and we trod onward!)
Tomas has two large issues going on. He is moving into ketosis way too fast, after only 2-3 hours of the second phase. Then, he does not use what ketones his body is making (the absence of an ability to use ketones as an energy source), so he keeps burning through those glycogen stores (ongoing glucose utilization) and his blood sugar keeps dropping, within 4 hours he is in a severely hypoglycemic state. His body wants that to stop ASAP so it keeps making ketones. If left untreated, his blood sugar would hit zero, he would make way too many ketones (which are an organic acid) causing his blood Ph to change, his brain would be damaged from the lack of sugar, and eventually he would die.
It is a metabolic disorder (ps - one of the causes of gastritis is a metabolic disorder) called a Ketone Utilization Defect and the doctor told me this morning it is "really really rare". She is going to do some research and then I meet with the Endo team on Wednesday. She gave me strict orders that Tomas is not to go more than 4 hours without food, it could be a very dangerous situation for him. She also told me that she is not aware of a "cure", other than to make absolutely certain the body has readily available sugar for energy.
I am thanking God that Tomas got a feeding tube at 2 days old making it a breeze to control his feeding. I am thanking God that he has a GJ tube, so when tummy bugs hit (or gastritis for that matter) and he doesn't want to eat, I can still get food into him via his intestines. If any of that should fail he would need to get to a hospital for IV glucose.
There are a few different kinds of ketone utilization defects and they are going to try to figure out which one he has, and if any dietary changes will help alleviate his issues. None of this bothers me as much as you would think. I have known for so long that something was wrong, and to have people pay attention and want to help is a huge relief.
Thanks for tagging along on this crazy roller coaster ride!
Friday, March 4, 2011
Progress!
What a long day! First Tomas went downstairs for a liver ultrasound to mark the positioning for the liver biopsy. Then we came back up to his room and waited for OR to call us down. Since it was a rather boring wait Tomas threw some fun at us by dropping his blood sugars while ON the IV fluids. Scramble, scramble, and an increased sugar solution IV was ordered and kept him stabilized. Eventually we were called down.
What can I say about that kiss goodbye? Nature may abhor a vacuum but that kiss does not. Placing your lips on your little ones forehead as they are about to be taken from you creates a nothingness, an abyss that pulsates its emptiness through to your soul. It recedes only after the massive exhale you take when you first see your child post-op.
The first doctor to come out was GI. He was able to get the liver sample with absolutely no problem, and no bleeding, praise God. HE should have the result by my appt. with him on Tues. Now onto the endoscopy. These were his exact words, "Tomas' stomach is very unhappy. It has blood oozing from everywhere." A feeling of giddiness washed over me. I wanted to do the happy dance all over the corridor. Something concrete? An answer to why he has had blood coming from his G port for 18 months? Yes!
He is treating it with some IV zantac and then doubling his prevacid for the long term. Possible causes are metabolic issues or motility issues, both which will be investigated.
Speaking of investigating metabolic disorders: While I was waiting for the oncologist to do the bone marrow biopsy two endocrine doctors came and got me out of the waiting room. We went to a conference room to discuss what has been happening with Tomas' sugars. What a relief it was to have the attention of the right people to help him. We went through everything and they assured me they would get to the bottom of what is going on. I was flying high when I left that conference and bumped into the hem/onc doctor coming to find me. The biopsy went textbook perfect and they will have the preliminary results for Monday's appt.
I went into PACU happier then I have been in a very long time. Tomas was sleeping and came out of the anesthesia perfectly, again praise God. We wheeled him up to his room where he woke up very unhappy from all the prodding in his stomach, began retching, desatting, turning blue, stomach arching, etc, etc... I ran and grabbed his stomach vent and between myself and two nurses, some zofran and loratab where able to get him settled about 45 minutes later. He was fairly touchy the rest of the evening, but has finally fallen asleep, and is on room air!
I am so exhausted, but finally, finally feel like we are making forward progress. He should get to go home tomorrow and then next week is follow up with all three clinics. Thank you all for your prayers and well wishes. If you have been through it then you know how much it means, and if you haven't, well, it just means a whole, whole lot!
What can I say about that kiss goodbye? Nature may abhor a vacuum but that kiss does not. Placing your lips on your little ones forehead as they are about to be taken from you creates a nothingness, an abyss that pulsates its emptiness through to your soul. It recedes only after the massive exhale you take when you first see your child post-op.
The first doctor to come out was GI. He was able to get the liver sample with absolutely no problem, and no bleeding, praise God. HE should have the result by my appt. with him on Tues. Now onto the endoscopy. These were his exact words, "Tomas' stomach is very unhappy. It has blood oozing from everywhere." A feeling of giddiness washed over me. I wanted to do the happy dance all over the corridor. Something concrete? An answer to why he has had blood coming from his G port for 18 months? Yes!
He is treating it with some IV zantac and then doubling his prevacid for the long term. Possible causes are metabolic issues or motility issues, both which will be investigated.
Speaking of investigating metabolic disorders: While I was waiting for the oncologist to do the bone marrow biopsy two endocrine doctors came and got me out of the waiting room. We went to a conference room to discuss what has been happening with Tomas' sugars. What a relief it was to have the attention of the right people to help him. We went through everything and they assured me they would get to the bottom of what is going on. I was flying high when I left that conference and bumped into the hem/onc doctor coming to find me. The biopsy went textbook perfect and they will have the preliminary results for Monday's appt.
I went into PACU happier then I have been in a very long time. Tomas was sleeping and came out of the anesthesia perfectly, again praise God. We wheeled him up to his room where he woke up very unhappy from all the prodding in his stomach, began retching, desatting, turning blue, stomach arching, etc, etc... I ran and grabbed his stomach vent and between myself and two nurses, some zofran and loratab where able to get him settled about 45 minutes later. He was fairly touchy the rest of the evening, but has finally fallen asleep, and is on room air!
I am so exhausted, but finally, finally feel like we are making forward progress. He should get to go home tomorrow and then next week is follow up with all three clinics. Thank you all for your prayers and well wishes. If you have been through it then you know how much it means, and if you haven't, well, it just means a whole, whole lot!
Record breaker ; broken record
Well he broke his old record set back in August. He made it from start time to end time on the fasting study in 5.5 hours. Last one was 6. His blood sugars hit 41, labs drawn, rescue med given, and now he sleeps. Anyone who needs a play by play can read this post from the August fasting study: Fasting Studies 101
At least this time we were able to go straight to the D10 and not try the glucagon.
I'm kind of mad sitting here tonight. In August after the first fasting study we were finally starting to get somewhere, but then another doctor stepped in. He ordered a second fasting study, during which Tomas never dropped his blood sugars. The doctor then discounted the first study saying something went wrong with it, and that the second study was the accurate one. Yet, here I am, at a different hospital, with a different doctor's group, going through the same test with the same results, feeling very much like a broken record. I'm thinking at this point the test where his sugars stayed stable was the fluke, and I am also trying to pray away some serious darkness concerning that doctor at the other hospital.
What's next? God willing, not another fasting study! Tomorrow (today actually) brings an endoscopy, bone marrow biopsy, and liver biopsy. All these tests have been waiting in the wings for so long. I am nervous. Nervous that they won't show anything, nervous that they will show something, nervous about anesthesia. Just the It's 3am and I can't sleep so I'll put my thoughts on paper nervous.
Luckily, this past Sunday's entrance hymn and Gospel were chosen specifically for me, so that 4 days after the fact I could call them up from the "Help me Lord" section of my brain. The entrance hymn was
Be Not Afraid
You shall cross the barren desert,
but you shall not die of thirst.
You shall wander far in safety,
though you do not know the way.
You shall speak your words in foreign lands,
and all will understand,
You shall see the face of God and live.
Be not afraid,
I go before you always,
Come follow Me,
and I shall give you rest.
If you pass through raging waters
in the sea, you shall not drown.
If you walk amidst the burning flames,
you shall not be harmed.
If you stand before the pow’r of hell
and death is at your side,
know that I am with you, through it all
Be not afraid,
I go before you always,
Come follow Me,
and I shall give you rest.
Blessed are your poor,
for the Kingdom shall be theirs
Blest are you that weep and mourn,
for one day you shall laugh.
And if wicked men insult and hate you, all because of Me,
blessed, blessed are you!
Be not afraid,
I go before you always,
Come follow Me,
and I shall give you rest.
The Gospel was Matthew 6:25 -
"No one can serve two masters. He will either hate one and love the other, or be devoted to one and despise the other. You cannot serve God and mammon. "Therefore I tell you, do not worry about your life, what you will eat (or drink), or about your body, what you will wear. Is not life more than food and the body more than clothing? Look at the birds in the sky; they do not sow or reap, they gather nothing into barns, yet your heavenly Father feeds them. Are not you more important than they? Can any of you by worrying add a single moment to your life-span? Why are you anxious about clothes? Learn from the way the wild flowers grow. They do not work or spin. But I tell you that not even Solomon in all his splendor was clothed like one of them. If God so clothes the grass of the field, which grows today and is thrown into the oven tomorrow, will he not much more provide for you, O you of little faith? So do not worry and say, 'What are we to eat?' or 'What are we to drink?' or 'What are we to wear?' All these things the pagans seek. Your heavenly Father knows that you need them all. But seek first the kingdom (of God) and his righteousness, and all these things will be given you besides. Do not worry about tomorrow; tomorrow will take care of itself. Sufficient for a day is its own evil.
So tonight I rest in Him, and tomorrow I kiss my baby goodbye again. For the terrible, awful, hopeful walk down the corridor to the OR. If 10,000 angels can fit on the head of a pin how many do you think can fit on a laptop's keyboard?
At least this time we were able to go straight to the D10 and not try the glucagon.
I'm kind of mad sitting here tonight. In August after the first fasting study we were finally starting to get somewhere, but then another doctor stepped in. He ordered a second fasting study, during which Tomas never dropped his blood sugars. The doctor then discounted the first study saying something went wrong with it, and that the second study was the accurate one. Yet, here I am, at a different hospital, with a different doctor's group, going through the same test with the same results, feeling very much like a broken record. I'm thinking at this point the test where his sugars stayed stable was the fluke, and I am also trying to pray away some serious darkness concerning that doctor at the other hospital.
What's next? God willing, not another fasting study! Tomorrow (today actually) brings an endoscopy, bone marrow biopsy, and liver biopsy. All these tests have been waiting in the wings for so long. I am nervous. Nervous that they won't show anything, nervous that they will show something, nervous about anesthesia. Just the It's 3am and I can't sleep so I'll put my thoughts on paper nervous.
Luckily, this past Sunday's entrance hymn and Gospel were chosen specifically for me, so that 4 days after the fact I could call them up from the "Help me Lord" section of my brain. The entrance hymn was
Be Not Afraid
You shall cross the barren desert,
but you shall not die of thirst.
You shall wander far in safety,
though you do not know the way.
You shall speak your words in foreign lands,
and all will understand,
You shall see the face of God and live.
Be not afraid,
I go before you always,
Come follow Me,
and I shall give you rest.
If you pass through raging waters
in the sea, you shall not drown.
If you walk amidst the burning flames,
you shall not be harmed.
If you stand before the pow’r of hell
and death is at your side,
know that I am with you, through it all
Be not afraid,
I go before you always,
Come follow Me,
and I shall give you rest.
Blessed are your poor,
for the Kingdom shall be theirs
Blest are you that weep and mourn,
for one day you shall laugh.
And if wicked men insult and hate you, all because of Me,
blessed, blessed are you!
Be not afraid,
I go before you always,
Come follow Me,
and I shall give you rest.
The Gospel was Matthew 6:25 -
"No one can serve two masters. He will either hate one and love the other, or be devoted to one and despise the other. You cannot serve God and mammon. "Therefore I tell you, do not worry about your life, what you will eat (or drink), or about your body, what you will wear. Is not life more than food and the body more than clothing? Look at the birds in the sky; they do not sow or reap, they gather nothing into barns, yet your heavenly Father feeds them. Are not you more important than they? Can any of you by worrying add a single moment to your life-span? Why are you anxious about clothes? Learn from the way the wild flowers grow. They do not work or spin. But I tell you that not even Solomon in all his splendor was clothed like one of them. If God so clothes the grass of the field, which grows today and is thrown into the oven tomorrow, will he not much more provide for you, O you of little faith? So do not worry and say, 'What are we to eat?' or 'What are we to drink?' or 'What are we to wear?' All these things the pagans seek. Your heavenly Father knows that you need them all. But seek first the kingdom (of God) and his righteousness, and all these things will be given you besides. Do not worry about tomorrow; tomorrow will take care of itself. Sufficient for a day is its own evil.
So tonight I rest in Him, and tomorrow I kiss my baby goodbye again. For the terrible, awful, hopeful walk down the corridor to the OR. If 10,000 angels can fit on the head of a pin how many do you think can fit on a laptop's keyboard?
Thursday, March 3, 2011
Admitted
Yesterday afternoon, while at a playdate with my homeschool group Tomas went into respiratory distress and his nurse called EMS. He stabilizied pretty quick and we had a relatively non-urgent ambulance ride to the hospital. His J tube had clogged a few minutes before the event, but I was able to rock the syringe and get it clear. Then he began acting like he was in pain and the distress came shortly after.
We were taken down to Dallas as the EMS thought his situation was too much for the satellite campus, and were in the ER for 12 hours before being moved up to the GI floor.
Several x-rays, fluoroscopies, labs, and tests later we don't know much, except he doesn't have a UTI, his tube placement is good, and he doesn't have strep. He did get a new tube placed today because the J valve was leaky, but that is unrelated.
The plan right now is to try to get him co-ordinated for an endoscopy, bone marrow biopsy, fasting study, and metabolic testing all before the weekend. It would really stink to have to come home just to go back and do all that testing!
He is on full gut rest right now and eventually we will run pedilayte and then formula through. He was incredibly distended and had lots of bile leaking out of his J port yesterday. Today, after a day of no feeds, he is back to normal.
As always, I am praying that this is the time something shows up on their radar screen.
We were taken down to Dallas as the EMS thought his situation was too much for the satellite campus, and were in the ER for 12 hours before being moved up to the GI floor.
Several x-rays, fluoroscopies, labs, and tests later we don't know much, except he doesn't have a UTI, his tube placement is good, and he doesn't have strep. He did get a new tube placed today because the J valve was leaky, but that is unrelated.
The plan right now is to try to get him co-ordinated for an endoscopy, bone marrow biopsy, fasting study, and metabolic testing all before the weekend. It would really stink to have to come home just to go back and do all that testing!
He is on full gut rest right now and eventually we will run pedilayte and then formula through. He was incredibly distended and had lots of bile leaking out of his J port yesterday. Today, after a day of no feeds, he is back to normal.
As always, I am praying that this is the time something shows up on their radar screen.
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