Thursday, December 23, 2010

Brady & Dylan

Dylan @ 14 months

Dylan has stayed out of the hospital and has been slowly gaining strength. He still has his feeding tube and we are trying to introduce foods orally now. He still has in home therapy 5x a week and his head control is finally coming along. Brady loves taking care of his little brother and he has been doing really well also. We are very blessed to have two amazing children like them!

Dylan 14 months

Monday, April 5, 2010

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...

Back to the ER

On Feb 8 the home nurse came to weigh Dylan and he had started to lose weight so her and the pediatrician suggested we take him back to the er. To be honest we no longer knew what to do for Dylan, he would maybe hold down one or two feeding a day. He was miserable and we were so concerned and just wanted an answer. Its a horrible feeling to see your child suffering and you cant help or fix it.

So we went back into the er at Beaumont and they took some blood and it looked fine but they will admit an infant if they are losing weight bc of failure to thrive. So i spent the next three nights in the hospital with him with absolutely no answers still. They consulted with GI specialists and the nuero surgeons. One morning they took a blood from his heal and his potassium levels were high and they rushed him to the PICU and did a EKG of his heart bc he could have had cardiac arrest. Well they took another sample in a few hours and it was still high. They failed to mention that when you take a heel poke the results are usually inaccurate. So they tryed getting a vein and couldn't find one bc of all his months in the hospital prior to that and they pretty much used all his viable veins. The doctor had to get a blood sample from his groin and the results came back normal. So they were going to send us back to the pediatric floor and Sal and I had just about had enough with the whole situation. We did not enjoy living at the hospital and we were moving further and further away from an answer. Nobody was willing to run any tests to see what was going on. And not to mention Dylan had probably caught something being in the hospital bc he now had a horrible cough. We then started talking about a transfer to U of M and had Dylan transfer ed there by ambulance on Friday.

Friday, March 5, 2010


Home again!! Things were looking up again for a few weeks and then Dylan continued to throw up. We took him to the er on Jan 31 and they tested the shunt and did a chest xray to see if he had pneumonia and all came back ok. So the doctors thought he may just have a virus. As the weeks went on he continued to get worse.

Thursday, March 4, 2010

Back to the NICU

Ok so its been a crazy few months and I am going to go back to December when we brought Dylan home...

After we arrived home it seemed as if Dylan was getting very sick. He was throwing up more and more each day (sometimes it was 20 times a day), very irratible, his eyes wouldnt focus and would shake and roll behind his head, and he was sleeping most of the day. On Janruary 12 the home nurse came to weigh him and get all his other measurments and when she took his head circumfrence it was off the charts for the norm. When he was born his head was in the 70th percentile and they did a head ultrasound to see if he had a build up of fluid (hydrocephalus) which came back negative. When we got discharged it was up to the 90th percentile which the doctors did not seem to be concerned about. Sal kept asking everyone why his head was so large and why all of a sudden his eyes were shaking but again it was brushed under the rug and they said he just has a big head and that his eyes were week bc of the md. So coming back to the last measurment we could no longer trust that this was normal. My mom for weeks and weeks after we left the hospital was begging me to take him to get a head ultrasound and I beleived the doctors so much that I ignored her advice. But with the last measurment I realized my mom was probably right all along...moms know best:) She told me that the morining before he was looking up at her and she felt that he was telling her to save him!!

We called the pediatrician and she advised we make an apt w a nuerologist and have them order a ct scan. The following morning I woke up with the worst feeling and was aboout to call the doctor when I recieved a call from her advising me to go in a few days to get one done on her order. I told her I couldnt wait any longer for an answer and Dylan was getting worse by the minute. She then told me to take him to the er and ask for a stat ct scan...

Well come to find out it was exactly what we thought...and he had hydrocephalus. They admitted him back into the NICU and schedualed a MRI for the following day. The results came back that he had Dandy Walker Syndrome which is not affiliated with myotonic dystrophy at all. poor baby boy hadnt been through enougph already that he was now faced with this condition as well! Dylan was going to need another surrgery>>>brain surgery... for a vp shunt to be placed in head which would drain the fluid down to his abdomen. They did not want to wait any longer without the surgery so it was scheduled for January 14th bc it was life threatening and he could have been having seizures all along, and he was having the worst migraines that whole time and we had no clue what was happening.

The surgery went smoothly, thank God!! And he was back home by the 17th.