Back in the hospital

Well here we are again almost one year later...back in the hospital. It began on Christmas eve when Dylan began feeling sick and had a fever. The following day he still was not acting like himself and had a fever again, wouldn't stop crying, throwing up and breathing really fast and hard. We decided he needed to go to the er on Christmas evening. They took him in for an xray of his chest and did a catscan of his head to make sure his shunt was working properly. A shunt malfunction could cause all those symptoms also. They started an iv because he was really dehydrated and told us his shunt looked great and that he had pneumonia and needed to be admitted. We stayed in the hospital until monday dec 27th. That evening the dr felt like he was holding down enough food and was stable enough to be discharged. I was very concerned because he was very unhappy and fussy not to mention had a 102.6 temperature. I had been telling the drs that he seemed to be in a lot of pain and wouldn't even let me lay him on his side which he usually loves. He said since it was a viral pneumonia the fever would last a few more days and the pain was from the pneumonia too and sent us home.

The next two days gradually got worse and worse and he wasn't even holding down pedialite and the fever and fussiness continued. He wasn't sleeping, constantly gagging himself and I've never seen him like that. He was suffering a whole lot so we took him back to the ER. It was now dec 30th 2010 at 9am I told them he was in a lot of pain in his stomach and they needed to check it. We went through the whole thing again...chest and stomach xray. The drs said he probably had ruptured his appendix and they also wanted to check how his pneumonia was looking. When the results came back the chest xray was completely normal and come to find out the drs looked back at his chest xray from the other night and said he never had pneumonia in the first place. Wow...right? We trust these people with our lives and they make a mistake like that. The stomach xray showed his stomach extended and nothing was getting in to his intestines. They sent us for an ultrasound to get a better idea of what was going on...it went on for an hour and a half because the tech couldn't figure out what the deal was so then the radiologist came in and was pretty confused himself. They just noticed a lot of fluid with debris floating around in
his stomach. Pretty inconclusive so they sent us for a catscan of his head and stomach. The reason for the head cat-scan again was to double check his shunt and the cat-scan would give more detailed info on his stomach. Pediatric surgery came by and said it looked like an infection of some type in his tummy but nothing needed to be done on there part that would correct it. Then the news from the neurosurgeon...his ventricles in his head were growing and they were much larger compared to the last catscan only days before which could mean a shunt infection or malfuction was going on. They advised us he needed emergency surgery that night. We tried to see if there was any way around it and they said he will prob be dead in a day or two without he surgery. His dr was out of town and the other pediatric surgeon was also. The on call doctor was a adult neurosurgeon and was called In at midnight. So it took them from 9am to midnight for them to figure this all out. What needed to be done was the shunt needed to be removed and they needed to put a temporary one in that is externalized which means instead of the excess fluid dumping in his belly it drains outside of his body in a bag. They do this until the infection goes away because if they put it right back in then the same thing will continue to happen. The surgery went well and we were able to see him after a few hours. Poor thing looked miserable and his iv had fallen out before surgery and they needed to replace it and then that one fell out after surgery and they tried to get a new one in for an hour but could not find a vein. A few hours later the dr came in and found one in his foot and by morning pediatric surgery came to put a pic line in which is a more temporary one but it required another small surgery. He also began to have a horrible cough due to the intubation so they were suctioning him every few hours trying to clear all that. He stayed in the ICU for a few days. Then was transferred to the pediatric floor because he was considered stable. He is still having problem holding down food but seems to be much more comfortable.

During surgery they were able to drain some of the fluid in his belly to test it. It came back with two very bad bacterias and they still dont know how he got that. It's possible it came from the shunt but the neurosurgeons are skeptical about that because this type of bacteria infection usually occurs right after surgery and since he was a year out of surgery the likelihood of this to happen is 1percent. They are contemolating having the shunt drain in his heart instead of stomach becuase this could easlily happen again within the next couple weeks to months. At this point they are giving him two very strong antibiotics to help w the infection and hoping by next week they will put the new shunt in. We have now been here for 9 days and its been rough. Sal and I switch sleeping here and Brady has been having a hard time
without his brother around and both of us w him. We are so lucky though because we have been blessed with the most amazing family and friends. Everyone is offering support and prayers and that is how we are able to continue with positive attitudes and I know God is listening and watching over Dylan.

Thank you everyone and God Bless!!! I will keep u posted.

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

New Pic

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 news...no 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.