It is finally the end of a very long week. Tomas went in for his ear tube placement on Monday. His other specialists took advantage of him already being under so he also had an endoscopy (stomach scope), bronchoscopy (throat scope), and a heart echo. He was kept overnight because he had such a terrible time coming out of the IV sedation after the last procedure (CT scan). He actually did wonderful with the general anesthesia, but as it turns out his wonderful is not so wonderful. During the night at the hospital he dropped his oxygen levels enough times that the on floor pediatrician requested a pulmonologist see him and determine whether to discharge Tomas or not.
After the pulmonologist rounded on Tomas, he was sent home, but with oxygen for when he is sleeping. As far as the test results from the procedures performed everything came back normal. That is great news and not so great news. I am very relieved that his heart looks strong and the holes are small. The bottom one is even smaller then before so it is trending in the right direction. The stomach scope showed nothing new which is disappointing since I would dearly like an explanation for why his stomach swells up around his g-tube the way it does.
Since the Tuesday release he has had 4 doctors appt's.
He saw speech therapy and has been cleared to start on solid foods! This is fantastic news. He is only allowed 4 tastes per day. It is torture to stop after only 4 spoonfuls but it is so great to watch him get excited about eating. He even opened his mouth for the spoon today. When he can handle those 4 tastes very well I can bump him up to twice a day.
He saw his endocrinologist for a thyroid check up. All is well controlled there. Good news is he managed to stay on his growth curve. That is a huge deal considering all the feeding issues he's had.
He saw cardiology this morning and his heart looks great for a Down's baby. The other positive is that even though he is straining his heart to breath it has not made any effect as of yet on his heart. Very good news indeed.
He saw GI this afternoon, but unfortunately there are no answers yet. His hernias are still causing problems with his feeds. His belly is still swelling around his mic-key button. Right now he is on a continuous feed and is doing well. If that should change the next step is to bypass his stomach altogether and feed directly into his intestinal track through a G-J tube. If that should fail than he is looking at the surgery to repair his hernias sooner rather than later. Everyone involved would like him to be as big as possible before going that route.
Because he was sent home with oxygen he now has to add a pulmonologist to his regimen. The one who saw him at the hospital is not on our insurance plan however so now I am in a desperate scramble to find someone who can see him before November (the date the first one I called said was their first available)!! Tomas will also need a sleep study sometime soon.
Which brings me to my next point. We now have TICU (Tomas' ICU) set up in our bedroom. A feeding pump, an oxygen monitor, an oxygen compressor and a transformer unit because the compressor doesn't regulate low enough for the dosage Tomas needs. So he is hooked up to 3 tubes every night and we listen to beeps all night long. It is going to take some getting used to. Mike has been great in trying to let me get some sleep but it is just too hard right now. I worry whether the cannula is hooked into his nose or around his neck!
Weeks like this just wear me out physically. I am so tired from running around and lack of sleep. For the first time today I screwed up one of his appointments. I had made an appt. with early intervention at the same time as his cardiology appt. They came out to the house while I was gone. Mike was here with the girls and called me at the doctors. I was so upset with myself and apologized profusely. Mike said they were very understanding but I still feel terrible mostly because I don't like to make mistakes (and then have to admit them!)
Thankfully, we have only one appt. next week. Tomorrow is Mike's 40th birthday and our pool is almost finished. They are adding the water tomorrow, then hooking up the equipment next week. I will try to get some pictures soon.
Love,
Dorothy
After the pulmonologist rounded on Tomas, he was sent home, but with oxygen for when he is sleeping. As far as the test results from the procedures performed everything came back normal. That is great news and not so great news. I am very relieved that his heart looks strong and the holes are small. The bottom one is even smaller then before so it is trending in the right direction. The stomach scope showed nothing new which is disappointing since I would dearly like an explanation for why his stomach swells up around his g-tube the way it does.
Since the Tuesday release he has had 4 doctors appt's.
He saw speech therapy and has been cleared to start on solid foods! This is fantastic news. He is only allowed 4 tastes per day. It is torture to stop after only 4 spoonfuls but it is so great to watch him get excited about eating. He even opened his mouth for the spoon today. When he can handle those 4 tastes very well I can bump him up to twice a day.
He saw his endocrinologist for a thyroid check up. All is well controlled there. Good news is he managed to stay on his growth curve. That is a huge deal considering all the feeding issues he's had.
He saw cardiology this morning and his heart looks great for a Down's baby. The other positive is that even though he is straining his heart to breath it has not made any effect as of yet on his heart. Very good news indeed.
He saw GI this afternoon, but unfortunately there are no answers yet. His hernias are still causing problems with his feeds. His belly is still swelling around his mic-key button. Right now he is on a continuous feed and is doing well. If that should change the next step is to bypass his stomach altogether and feed directly into his intestinal track through a G-J tube. If that should fail than he is looking at the surgery to repair his hernias sooner rather than later. Everyone involved would like him to be as big as possible before going that route.
Because he was sent home with oxygen he now has to add a pulmonologist to his regimen. The one who saw him at the hospital is not on our insurance plan however so now I am in a desperate scramble to find someone who can see him before November (the date the first one I called said was their first available)!! Tomas will also need a sleep study sometime soon.
Which brings me to my next point. We now have TICU (Tomas' ICU) set up in our bedroom. A feeding pump, an oxygen monitor, an oxygen compressor and a transformer unit because the compressor doesn't regulate low enough for the dosage Tomas needs. So he is hooked up to 3 tubes every night and we listen to beeps all night long. It is going to take some getting used to. Mike has been great in trying to let me get some sleep but it is just too hard right now. I worry whether the cannula is hooked into his nose or around his neck!
Weeks like this just wear me out physically. I am so tired from running around and lack of sleep. For the first time today I screwed up one of his appointments. I had made an appt. with early intervention at the same time as his cardiology appt. They came out to the house while I was gone. Mike was here with the girls and called me at the doctors. I was so upset with myself and apologized profusely. Mike said they were very understanding but I still feel terrible mostly because I don't like to make mistakes (and then have to admit them!)
Thankfully, we have only one appt. next week. Tomorrow is Mike's 40th birthday and our pool is almost finished. They are adding the water tomorrow, then hooking up the equipment next week. I will try to get some pictures soon.
Love,
Dorothy
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