Saturday, March 6, 2010

U of M

So before we could even put our bags down they were getting an eeg set up to see if seizures were an issue. After 48 hours of that test we received good seizures. The drs decided they wanted an extensive mri done to check his shunt and brain. His first mri that was done at beaumont did not require him to be put to sleep but this one was over an hour and they needed to give him anesthesia bc he needed to stay still. Sal and I were contemplating doing that because he would then need to get intubated (which is a breathing tube ) and get an iv which was almost impossible bc of all his hospitalizations he no longer had any viable veins. After talking it over, we were convinced to go ahead with the test bc if God forbid there was something going on with the shunt this was the only way to find out and we needed answers. So I waited back in the room for them to let me know when he was back in recovery. He was going to the Pediatric Intensive Care Unit bc of the breathing tube and they did not want to extubate until he was fully awake. After at least three hours we decided to make our way to the picu to see what the problem was. He looked so weak and they were unable to get iv access. But believe me they tried!...They poked him over 30X!!! I was livid and the anesthesiologists was lucky that I did not see her again. Well that night they took the breathing tube out and I had to remind the doctors at least 10 times to reset his shunt settings back to 80 bc the magnets in the mri machine reset it. The next day he was struggling and I could just tell something was not right. He slept the whole day, his heart rate was elevated and if he was awake he was crying but the drs seemed to think he was fine. We had to keep telling them that he is our son and know what his norm is and that was not his norm. They got a culture and an xray and he had a collapsed lung and pneumonia. They put him on a bipap machine to help pop the lung open and it was taking days for him to improve. The MRI results came back and they were normal. At one point the doctors were thinking he was regressing and was not going to make it. They called the pallitive care team to come talk to us...which is a team for end of life care. We were not giving up on him and had faith that he was going to get better. Although Dylan wasn't yet baptized we asked our priest, Father Frank, to come to the hospital and baptize him. It seemed as if the following day he began improving. It was a true blessing from God and all the doctors were amazed with his improvement.

After a few more days they moved Dylan back to the regular pediatric floor and did a swallow study on him which he failed and we were no longer able to feed him by mouth bc he was aspirating and it could go into his lungs and cause pneumonia. They also did a ph probe test which tests for reflux which was positive and an echo on his heart which was fine. And finally they did a sleep study which was going to show if he had apnea where he stops breathing at night. It showed that he did had obstructive apnea which was bc of his low tone and his tongue would flop back. Some doctors were saying we would need to put a trek in or cut his tongue out and reattach. I thought they were all crazy until a surgeon looked at him and said to just position him on his side or stomach to sleep. I will NEVER again listen to doctors harsh approach and always get a second opinion. We have learned so much through this journey with Dylan and we need to be his advocate and cannot put all our trust in the medical system because it is very flawed in alot of ways.

We are thanking God everyday for our angel and he came home on Feb 26th. Brady took it very hard when Sal and I were taking turns sleeping at the hospital every night but he is a trooper.

It has been over a month and Dylan was doing great up until last week when he started throwing up again:( Nobody knows what the problem is bc we never got a reason when he was hospitalized bc it stopped on its own and all these other things took precident over that. I am devasted bc now they just want to do surgery and make his g tube a gj tube which would be placed in his small intestine and he will need to be attatched to a feeding pump all day and night. We will know more this week...

No comments:

Post a Comment