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.
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