Nick's Contagious Smile!

Nick has been in the hospital for about 3 weeks with multiple bowel obstructions. First a little background. Nick was born at 24 weeks and spent 5.5 months in the NICU. He has perforated intestines a week after he was born. He had a grade 4 intraventricular hemorrhage which resulted in Hydrocephalus. He has a shunt to drain his cerebral spinal fluid because his body isn't able to do that on its own. He has had multiple shunt revisions- about 15. Shunt surgery is brain surgery where a catheter is placed in his brain and a valve behind his ear and tubing that drains into his belly. He also has cerebral palsy, epilepsy, eosinophilic esophagitis, 14 food allergies, profound deafness, and he is non verbal.

On May 17 Nick started vomiting at home. It lasted all night and he was groaning in pain. He didn't have a fever so we worried he had a shunt malfunction. One of the symptoms of shunt malfunction is vomiting. We went to the emergency room early on May 18. They ran the shunt series of xrays and a head cat scan. His shunt looked good. He was severely dehydrated so he was admitted for fluids and observations. He projectile vomited all over the place this day. In the ER, in x ray, the ER again and right when we got to his room he showered it with vomit. His temperature slowly rose all day to 102. He was put on fluids and 2 anti nausea medications. Vomiting continued for several days. They mentioned maybe doing a CT of the abdomen but he didn't have a distended belly so they didn't really think he had a blockage. Next, diarrhea started. They tested the diarrhea and he tested positive for Rotavirus. Now we had an answer. He stayed a few more days and went home on May 23 with vomiting and diarrhea likely for a few more days.

The vomiting never really stopped. He had some small almost reflux vomits and never got back to eating like normal. On Sunday, May 28 he started projectile vomiting again. We took him to the emergency room that night. Repeated the shunt scans. Shunt still looked good but the xray showed a bowel obstruction. He was taken to surgery early the next day. We were shocked when we met the surgeon after surgery and he told us he had multiple blockages due to adhesions and scar tissue. Nick has had several abdominal surgeries- the perforated intestines after birth was a 2 surgery process, he had his gallbladder removed due to stones and every shunt surgery he had his abdomen opened to insert the drain. All these surgeries cause scar tissue and adhesions. The surgeon also took out his appendix to save him from another abdominal surgery if he were to get appendicitis. He also had to externalize his shunt tubing due to a small opening out bowel and infection risk. If he were to develop an infection from surgery it could travel up his shunt to his brain. He was taken to the pediatric ICU and will remain there until his shunt is put back in. The next few days were just gut healing and waiting for the gastric fluid to turn clear. X Rays all looked good and he was heading in the right direction. Saturday, June 3, they pulled the ng tube and he was so happy. We got him in his chair for about 45 min and gave him a proper bath. He was retaining urine so he had to get a catheter. After that he started to go down hill. There was blood in his urine and He had a few reflux-like juicy burps that started to worry me. Then he started to moan and groan. He had a few small vomits and they thought it was a distended bladder that was causing the discomfort and bloating. After the small vomits surgery said to put the ng tube back in to suction. During this he started projectile vomiting again. It was a lot and in my heart I knew he had another bowel obstruction. Xray was taken and it said small bowel obstruction. CT was taken. This also said small bowel obstruction with possible perforation. Perforated bowels mean gastric fluid is just free flowing inside his body. This is very serious and causes sepsis which is life threatening. Surgeon arrived and prepared us for what could be a very difficult and life threatening surgery. Said he would most likely come back on a ventilator to help with pain control. During all of this they started him on antibiotics and the picc line stopped working. While down in surgery they put a femoral line in. Thankfully his intestines were not perforated; they were just obstructed from new adhesions that grew from his surgery the week before. They put a film on his intestines this time to try and prevent new adhesions. The next few days were pretty rough. He was in a lot of pain and could not get comfortable. His urine was very dark and he tested positive for a UTI. The surgery team said his urine wasn't the color of UTI urine. I think he had muscle breakdown which causes brown urine. I asked them to test for that several times but they didn't. The treatment is fluids which he was getting so we never will know. He had a bowel movement Tuesday afternoon which is great because it means his bowels are moving. His surgeon thinks all the uncomfortableness was from cramps from his intestines waking up. Wednesday he was pretty comfortable with a new pain management plan. Wednesday his femoral line started leaking and not giving blood back. They had to change the dressing about 5 times that day and night. They were able to place an ultrasound guided IV in his arm that night but by morning it wasn't giving blood back either. He also started having an irregular heart beat with PVC's. His heart was starting a new beat before it was done with the one before it. Doctor said 99 out of 100 times its nothing and could be from his electrolytes being off balance. They did a chest xray and his abdominal x ray early since they were here. The abdominal xray showed dilated bowels. The morning abdominal x ray also showed dilated bowels. Thursday he slept pretty much all day. He got a new picc line and had a good night for once. So far today, Friday June 9, he has been pretty good. He's awake and watching his videos. The x ray from this morning shows no change in dilated bowels. The surgeon said his were really big and it will take time for them to go down. He will be in the PICU until his shunt goes back in. We don't have a date for that.

Nick as been in the hospital for 3 weeks minus 4 days. It is exhausting. I'm, Mom, sleeping only every other day lately. Things seem to happen on my nights here. Dad is working. The dogs have no idea what's going on but they know something is off. No one is home with them and when we get home it is just to sleep. The house has been neglected and we have nothing to eat since we haven't been to the grocery store and have no energy to cook. We have been blessed with a meal train which has helped so much! We really need help with the house and lawn at this point. Anything and everything is very appreciated.

Thank You!