Tomas had his swallow study and it was a disaster, but not for the reasons I thought it would be. The last time I fed him on anything of a regular schedule was about 6 weeks ago. He ended up with bronchitis again so the last pulm doctor put him on hold until after the next swallow study. I gave him a good long break before I even tried to just give him a spoonful here and there. About 3 weeks ago I tried to give him some baby fruit, and he turned his face away. A few days later and he turned his face a way, but with moderate amounts of effort on my part he did take 3 or so spoonfuls before I stopped so as not to make him sick again. I remember thinking while this was all going on that it has finally happened. He is getting orally averse. After almost two years of no real mouth eating he is done with it, plus I think he's finally figured out it hurts and he doesn't like it.
Flash forward to this morning and he wanted nothing to do with the bottle, or the spoon. I tried a few times but there was no coaxing him at all. Finally, the feeding therapist forced a syringe into his mouth to make him swallow, he spit it back out. The test was called off and I got to clean off my barium covered baby.
The report (the therapist told me) is going to say he is orally averse and needs intensive feeding therapy, just so he can come back and have another test to see if he is actually allowed to eat. Wrap your head around that one.
Now comes decision time, I talked to Mike and the first thing he said was we needed to get him therapy right away otherwise he won't eat. I am so torn over this. I can see both sides, the first being that we need to teach him how to eat and to learn that eating is not going to hurt him (providing of course that he is NOT aspirating - which we can't tell until he eats - bizzarro). That means intensive therapy and fair amounts of torture as he clearly does not want food in his mouth. With a fair amount of work we could get him to the point where he can be tested and then see if it is ok to continue feeding him or not.
The other side is why bother right now? He is still going to need the tube until we figure out the metabolic issues, so why try to get him eating. Why not just wait until he is 3 or 4 and we can use (a small) amount of reason to lessen the severity of trauma involved in learning to eat.
Ugh... I just don't know, it can so go either way. On one hand, he could get a metabolic diagnosis in, let's say, a month, and without feeding him for that month I would lose what (very) tiny hope I have right now of getting him to take a spoon. On the other hand he has only been sick once since we moved back to continuous j feeds (in August). I can't discount that.
Out of curiosity I tried tonight to feed him. After much happy talking and cheering I did get him to let the spoon in twice. He spit all the food out but he did open his mouth for the spoon. So maybe that is the happy medium God is trying to show me. Keep him allowing the food in there, but don't force him to swallow it. Not yet anyway.
Wednesday, November 17, 2010
Tuesday, November 16, 2010
"The stander!"
This is still hard for me to believe but here is the evidence. This morning he actually clapped and got excited when he saw it - weird little person that he is!
Monday, November 15, 2010
Standing frames and label makers
The standing frame came three days ago. I was so afraid of this thing. I thought for sure he would hate it. I thought he would fuss from the minute we tried to strap him in until I finally let him free 5 minutes later.
I was wrong. Really wrong.
The first time the PT was here and set all the measurements and heights. We laid him down on it, affixed all the straps, and then inclined him. Not a peep. We put toys on the tray for him to chuck off (his favorite game) and he just chucked away. No fussing. 10 minutes go by, 15, 20. Really, who is this child? He won't bear weight on his legs for more than 5 seconds, usually less, at any other time. At the 25 minute mark he started to rest his head so we took him out. All in all almost half an hour without one complaint.
It has been 4 days now and he's gone for half an hour every day without a peep of complaint. This morning he actually smiled and laughed. I am so shocked. Granted there is not much weight on his feet, most of it is distributed throughout the frame, BUT his feet are touching the plates, and he is strapped in and can only move his arms and his head. My mother in law thinks it is because he likes the view. She may be on to something. usually he sees the world from 6" off the ground. There is no hint of weight bearing without the frame, just as before, but way I am so thrilled to have a way to work with him that he doesn't complain about!
As usual he has a few medical things going on, most of it just ongoing issues. He is intermittently bleeding from his G port though, and that is new (at least in the recent months). It is not just the "tube irritation" blood that I sometimes find, but actual bleeding from inside the stoma. Just very faint though. I was collecting gastric acid (as exhibit A) to bring to the doctors with me later this week when The Maniac struck.
He had been away on a business trip for a week. On Friday evening I purposefully cleaned and shined the bathroom counter tops and put my graduated cylinder of bloody goo in the back corner by my sink so the maniac would not pay any attention to it. He got home after midnight, and Saturday morning I got up to make breakfast. He got up to clean the bathroom. I don't call him a maniac for nothing. Really, pancakes and bacon are cooking? - great he's got time to scrub a toilet! Usually, this is a good thing as scrubbing toilets is not high on my "like" list.
A while later I went to do Tomas' morning stuff. I had his acid in the syringe and went into my bathroom to add it to what was already there. The cylinder was (any one guessed it yet?) empty!!! Really? I cleaned the counter tops the night before to prevent this exact thing! What was he thinking, that I keep medical bottles around with bloody goo just for fun? Did he even ask before he dumped it? And the kicker is do you know what he said when I was like "what the hell were you thinking?"
"Well, you should have put a lid on it and labeled it SAMPLE"
I was wrong. Really wrong.
The first time the PT was here and set all the measurements and heights. We laid him down on it, affixed all the straps, and then inclined him. Not a peep. We put toys on the tray for him to chuck off (his favorite game) and he just chucked away. No fussing. 10 minutes go by, 15, 20. Really, who is this child? He won't bear weight on his legs for more than 5 seconds, usually less, at any other time. At the 25 minute mark he started to rest his head so we took him out. All in all almost half an hour without one complaint.
It has been 4 days now and he's gone for half an hour every day without a peep of complaint. This morning he actually smiled and laughed. I am so shocked. Granted there is not much weight on his feet, most of it is distributed throughout the frame, BUT his feet are touching the plates, and he is strapped in and can only move his arms and his head. My mother in law thinks it is because he likes the view. She may be on to something. usually he sees the world from 6" off the ground. There is no hint of weight bearing without the frame, just as before, but way I am so thrilled to have a way to work with him that he doesn't complain about!
As usual he has a few medical things going on, most of it just ongoing issues. He is intermittently bleeding from his G port though, and that is new (at least in the recent months). It is not just the "tube irritation" blood that I sometimes find, but actual bleeding from inside the stoma. Just very faint though. I was collecting gastric acid (as exhibit A) to bring to the doctors with me later this week when The Maniac struck.
He had been away on a business trip for a week. On Friday evening I purposefully cleaned and shined the bathroom counter tops and put my graduated cylinder of bloody goo in the back corner by my sink so the maniac would not pay any attention to it. He got home after midnight, and Saturday morning I got up to make breakfast. He got up to clean the bathroom. I don't call him a maniac for nothing. Really, pancakes and bacon are cooking? - great he's got time to scrub a toilet! Usually, this is a good thing as scrubbing toilets is not high on my "like" list.
A while later I went to do Tomas' morning stuff. I had his acid in the syringe and went into my bathroom to add it to what was already there. The cylinder was (any one guessed it yet?) empty!!! Really? I cleaned the counter tops the night before to prevent this exact thing! What was he thinking, that I keep medical bottles around with bloody goo just for fun? Did he even ask before he dumped it? And the kicker is do you know what he said when I was like "what the hell were you thinking?"
"Well, you should have put a lid on it and labeled it SAMPLE"
Monday, November 8, 2010
Patient Abandonement
Since Oct. was Ds Awareness month, and I was writing about Tomas' arrival I didn't want to interrupt with my doctor drama, but now that it is November - drama away!
On Oct. 29th I got three letters in the mail (one for each of my kids) from their pulmonologist. They all said the same thing, that she was shutting down her office effective OCTOBER 1st and moving out of state. The medical records were with her and if we wanted them faxed to another doctor's office she gave us a fax number and a form to fill out. That night I was in a panic - how could I get another pulmonologist that fast? The ones at the children's hospital had a 4 month wait and winter is on its way! The following morning at 8:10am I get a phone call from the pediatrician that he got a very curious letter from the pulmonologist and did I know anything about it? I told him I got the same letter - he said, "Well then, we need to get Tomas a new lung doctor ASAP." No kidding, not to mention the other two who have asthma and the older one who has fairly significant asthma, but yeah, I need a new doc ASAP for little man all right. He gave me the numbers of some people and said if I had trouble (more than a week's wait) to call him back.
Amazingly, when I called the first preference of the pediatrician and explained the situation, I was able to get an appointment for today. That was so perfect, the girls have to wait a bit longer since they weren't as urgent, and will go mid-month to get established, but Tomas was definitely the priority. Next up, getting his records faxed to the new office. I faxed the form to the number on the letter, NO ANSWER. I called the old office number - no answer, I tried the old fax number - no answer. I called the pediatrician - he had no more luck than I. I googled the number the pulmonologist left, it is a fax number for a non-medical office in New Orleans. I tried the phone number connected to that office, but NO ANSWER.
That's it -she's gone, and has records for all my kids and I can't get them. My fantastic pediatrician copied what he had and thought was pertinent (that alone was 80 pages - can you imagine what the full file must be like?) and I picked that up on Friday to take with me today. When I got to the new doctor's office and handed him the records and old x-rays (which thank God I kept a copy of!) he said - "So there's no way to get his records?" Nope, not that I can tell. He said, "Well, you're not really supposed to do that. She didn't give you any warning?" Nope. I took Tomas to her on Sept. 28th for a sick visit. She shut down Oct. 1st. He said "It's like patient abandonement - if she hadn't left the state I would...(he didn't finish)"
And I thought, "That's it." That is exactly what I feel like, it's horrible. No office notes, no plans for treatment. Nothing. We are starting completely over. And she was supposed to file an appeal for his Synagis since he was denied this year. I have no idea whether she did or not. The worst part is she was a fantastic doctor. She took hours when needed to care for him and go over everything, and called to check on him (or Olivia) sometimes even pretty late when she had finished rounding at the hospital. I am assuming something horrible happened because nothing else makes sense. But not having any working numbers also makes no sense so I just don't know.
The new pulm was very good and needs to go over what I gave him today, and then get back to me. Of course the word trach was tossed around, because when you think Ds, obstructive sleep apnea, and aspiration, you think trach, but I hope that he'll come around the way the others did. If Tomas should need it, then so be it, but right now I don't think he does. Time will tell. He also wants to move up the sleep study - it was supposed to be in January. He wants it much sooner, since pulmonary hypertenstion is a worry. Right now we are just in the evaluate mode.
Fun, fun, fun!
On Oct. 29th I got three letters in the mail (one for each of my kids) from their pulmonologist. They all said the same thing, that she was shutting down her office effective OCTOBER 1st and moving out of state. The medical records were with her and if we wanted them faxed to another doctor's office she gave us a fax number and a form to fill out. That night I was in a panic - how could I get another pulmonologist that fast? The ones at the children's hospital had a 4 month wait and winter is on its way! The following morning at 8:10am I get a phone call from the pediatrician that he got a very curious letter from the pulmonologist and did I know anything about it? I told him I got the same letter - he said, "Well then, we need to get Tomas a new lung doctor ASAP." No kidding, not to mention the other two who have asthma and the older one who has fairly significant asthma, but yeah, I need a new doc ASAP for little man all right. He gave me the numbers of some people and said if I had trouble (more than a week's wait) to call him back.
Amazingly, when I called the first preference of the pediatrician and explained the situation, I was able to get an appointment for today. That was so perfect, the girls have to wait a bit longer since they weren't as urgent, and will go mid-month to get established, but Tomas was definitely the priority. Next up, getting his records faxed to the new office. I faxed the form to the number on the letter, NO ANSWER. I called the old office number - no answer, I tried the old fax number - no answer. I called the pediatrician - he had no more luck than I. I googled the number the pulmonologist left, it is a fax number for a non-medical office in New Orleans. I tried the phone number connected to that office, but NO ANSWER.
That's it -she's gone, and has records for all my kids and I can't get them. My fantastic pediatrician copied what he had and thought was pertinent (that alone was 80 pages - can you imagine what the full file must be like?) and I picked that up on Friday to take with me today. When I got to the new doctor's office and handed him the records and old x-rays (which thank God I kept a copy of!) he said - "So there's no way to get his records?" Nope, not that I can tell. He said, "Well, you're not really supposed to do that. She didn't give you any warning?" Nope. I took Tomas to her on Sept. 28th for a sick visit. She shut down Oct. 1st. He said "It's like patient abandonement - if she hadn't left the state I would...(he didn't finish)"
And I thought, "That's it." That is exactly what I feel like, it's horrible. No office notes, no plans for treatment. Nothing. We are starting completely over. And she was supposed to file an appeal for his Synagis since he was denied this year. I have no idea whether she did or not. The worst part is she was a fantastic doctor. She took hours when needed to care for him and go over everything, and called to check on him (or Olivia) sometimes even pretty late when she had finished rounding at the hospital. I am assuming something horrible happened because nothing else makes sense. But not having any working numbers also makes no sense so I just don't know.
The new pulm was very good and needs to go over what I gave him today, and then get back to me. Of course the word trach was tossed around, because when you think Ds, obstructive sleep apnea, and aspiration, you think trach, but I hope that he'll come around the way the others did. If Tomas should need it, then so be it, but right now I don't think he does. Time will tell. He also wants to move up the sleep study - it was supposed to be in January. He wants it much sooner, since pulmonary hypertenstion is a worry. Right now we are just in the evaluate mode.
Fun, fun, fun!
Thursday, November 4, 2010
The (really) good and the (not too) bad
Good first - he's home, and had only a tiny bit of trouble with anesthesia. The doctor was ready for him and did something with the meds when Tomas started dropping his heart rate. So no intervention necessary this time - hooray! MRI went great and we should have results by Monday.
Bad - No platelet study as Tomas would not bleed today. They sent in the expert for difficult sticks and after 3 tries even she gave up. The game plan was then to draw out from the IV after it was placed, but that didn't work either. Nothing. Nada. So we have to go back another time to do it. The bummer of that is that particular test is only done in Dallas so I'll have to drive back there sometime soon. More bad - his blood sugar was already starting to drop after only 2 hours of fasting. He had been on pedialtye for 3 hours previous to the fasting but there just doesn't seem to be enough sugar in pedialyte to help him. That means his blood sugar issue is still there, we are just masking it with the continuous feeds. He stayed on a D5 drip through the procedure to keep his levels stable, and I was able to re-start his feeds before we left.
Thank you all so much for your thoughts and prayers. When I checked the computer this afternoon and saw all the messages I was so grateful. It is so uplifting to know that you all remembered him today.
A few weeks ago at a pumpkin patch:
Bad - No platelet study as Tomas would not bleed today. They sent in the expert for difficult sticks and after 3 tries even she gave up. The game plan was then to draw out from the IV after it was placed, but that didn't work either. Nothing. Nada. So we have to go back another time to do it. The bummer of that is that particular test is only done in Dallas so I'll have to drive back there sometime soon. More bad - his blood sugar was already starting to drop after only 2 hours of fasting. He had been on pedialtye for 3 hours previous to the fasting but there just doesn't seem to be enough sugar in pedialyte to help him. That means his blood sugar issue is still there, we are just masking it with the continuous feeds. He stayed on a D5 drip through the procedure to keep his levels stable, and I was able to re-start his feeds before we left.
Thank you all so much for your thoughts and prayers. When I checked the computer this afternoon and saw all the messages I was so grateful. It is so uplifting to know that you all remembered him today.
A few weeks ago at a pumpkin patch:
Wednesday, November 3, 2010
MRI
During October's Tomas story I purposely didn't blog about any medical stuff. It was a long month with much discussing and little headway. Doctors were able to rule out one disorder (Schwachman Diamond) but there are still a few on the table - some of which are pretty scary. Finally, after much back and forth, tomorrow Tomas has an MRI for his liver. Hopefully, this will give us some sense of what is going on with his liver enzymes and lead us to an answer for the immune system and neutropenia. After the MRI (if all goes well) he is having a special platelet aggregation study done to try and find a reason behind his petechiae. It could be a big day for us in moving forward toward answers.
The last time he went under he needed an injection to get his heart going again and bagging. I'm a little nervous but not too much as they know him pretty well at the hospital and are always ready for him. But if you could remember him in your prayers tomorrow I would be most grateful. Thank you!
The last time he went under he needed an injection to get his heart going again and bagging. I'm a little nervous but not too much as they know him pretty well at the hospital and are always ready for him. But if you could remember him in your prayers tomorrow I would be most grateful. Thank you!
Monday, November 1, 2010
Frog Scooting
His therapist called it "interesting". She is bringing a standing frame next week since he still won't bear weight on his legs, and she doesn't think this is an effective means of mobility. Personally, I could care less right now. Maybe if he was, oh let's say 5 or so and still scooting about I might have trouble with it, but for now it is pretty cute. I'll try the frame but I already told her I have no intention of torturing him with it. We did run into a snag with the cooler weather, though. Socks on his feet don't give him enough traction, and shoes make his feet stick and he can't move with them on. I tried some moccasin socks I found at Target but they are only sticky on the bottom and he digs in with the side of his feet. I may have to get creative!
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