After Reston, Children’s National, Hopkins, Fairfax, and CHOP, Ian can now add a 6th hospital to his list. We have been admitted to Lansdowne Hospital in Loudoun County VA. It all started this morning when Ian woke up...
He woke up about 90 minutes early and was a little fussy. I thought nothing of it and gave him an opportunity to fall back asleep on his own. I did not check on him. After about 15 minutes, Ian began crying. I decided to go into his room and try and rock with him a bit. As I entered the room, I saw nothing but Ian, standing in his crib, covered in blood! Ian’s room has recently been painted neutral to help the house sell, and all of his furniture is white.... tons of red blood was a huge stand out in the room.
Panicked, I rushed to him and checked for any visual trauma. I saw nothing, other than the fact that his nose, mouth, ears and his entire face, was covered with blood. I couldn’t tell where it was coming form. He has a very large gathering of blood at the base of his left nostril. I decided since blood was not running out of him, and he wasn’t crying or distraught, I would jump in the shower with him and rinse him off. I was hoping I would be able to get a better image of where the blood was coming from.
Ian had finished his overnight feeding at 5:30am. When I went in to turn the pump off, he was fine, no troubles. Since he was still attached to the tubing, I needed to unhook him before getting into the shower. As I detached Ian’s extension form his G tube, blood began running out, bright red blood. Now, I was really concerned.
I called 911 and the paramedics arrived. Ian was scared with lots of new faces in his room, but didn’t seem hurt or disoriented. We took this as a good sign. After a thorough overview and vitals, the guys decided Ian probably had a very large nosebleed that had gone horribly bad. Since Ian had been lying down, if the bleed was in the back of the nose, he would have been swallowing a lot of the blood. The blood seemed to have clotted and stopped.
Before the gentlemen left, I wanted to check the integrity of the G tube and make sure no blood was coming out form around the stoma. Nothing was notable. As I attached an extension to the button, and started drawing fluid from his tube with a large syringe, all I got was blood, about an ounce of blood! The look on the paramedic’s face was unforgettable. He told us we were going to the ER. Ian’s stomach was essentially filled with blood.
Once in the ambulance, they did a thorough history and assessment of Ian. Upon hearing of his history, the men decided they were going to make a short stop nearby to pick up another higher level medic. This man knew exactly what he was doing. He spoke to the hospital prior to our arrival and multitasked like I thought no man could ever do! I was impressed.
When we arrived at the hospital, They drew some blood for labwork. Ian’s blood cell counts were all normal, along with his clotting factors and so forth. There was no infection and his blood was normal. The next test was two radiographs to look for any perforation or tears in the GI tract. Nothing was found on these films. The next test was a gastrography. This test pushes contrast through the G tube and shows on radiographs. They were looking to see if the G tube had been misplaced or compromised in any way. Both of these radiographs were normal as well.
The ER physician spoke to the surgeon who did the G tube and he believed the reason for bleeding was internal granuloma tissue. Granuloma tissue is tissue that forms from the result of trauma as the tissue heals. Ian had some trouble with this tissue forming outside the stoma. It looks like a little red blister that bleeds very very easily. Apparently, this can form inside as well; if bumped the wrong way, it can bleed until it clots and heals over again. Another thought he had was an ulcer.
Either way, Ian’s tummy needed to be checked for residual blood. They placed a large tube down his nose and lavaged everything out. This is essentially like pumping the stomach. Saline was flushed in, and drawn back out repeatedly until it showed no more blood. If this test has repeated withdrawn blood without cessation, they would have transferred him to Gi immediately for an endoscopy to find out where he was bleeding.
Fortunately, Ian’s lavage came back clean in the end. The blood was gone and passed into intestines by now. There was no active bleeding taking place. After this test, the ER physician spoke to the doctor at CHOP. After discussing things with him, he decided that if there was an urgent need for treatment or testing, he would be transferred directly to them in Philadelphia. Dr. Blinman, the CHOP surgeon mentioned he did not think the cause was granulation tissue. He said granulation tissue really wouldn’t produce that much blood.
One of the radiographs did show a small dark shadow behind the heart. The radiologist asked the physician if Ian had a Nissen Fundoplication... and of course he does. The shadow seen is a hernia. Ian has herniated his stomach partially through the Nissen wrap done in September. This is a hiatal hernia. Ironically, this may or may not be linked to the bleeding and could be completely independent. The decision was made to admit Ian and observe his normal feeding routine overnight to watch for more bleeding.
Once we were on the floor and in our room, the pediatrician came in to speak with us. Her main thought process stemmed around the thought of a nose bleed. Her thought was if he had a bleeding hernia or ulcer, it would most likely have bled again by now. She saw clotted blood in Ian’s nose and thinks that may have been the origin based on Ian’s history of congestion, chronic sinusitis, respiratory issues. She will also be looking for a bacteria that can run rampant in the bowel after a course of antibiotics, called c. diff. They will be running some tests on his stools.
At this point in time, there is no immediate need to do an endoscopy to find an exact source of bleeding, and it may not even find one. Tomorrow morning, if all goes well overnight, we will return home and follow up with CHOP next Thursday. If there is any bleeding before tomorrow around lunchtime, Ian will be transferred to CHOP immediately. Ian’s doctor there wants to see him himself if anything happens.
On another note, Ian will need to have another upper GI done shortly to test the integrity of the Nissen again, since the hiatal hernia is present. sometimes, these need repairing and sometimes they are fine the way they are. CHOP will be able to give us more information on this.
So after 7 days of exams, MRI, blood glucose testing, and today’s adventures, Ian has been stuck over 12 times. The poor kid looks like a pincushion at this point. Thankfully, the large tube form his nose has been removed and only the IV remains. He has been eating now for 2 hours and no troubles so far. His feeding will be over at 4:30am. The next several hours will tell us a lot about what was going on.
The doctor said we may not be able to find an answer, but that she feel as though the bleeding was coming from the nose. She said normally, children and adults would vomit up the blood as it accumulated in the stomach and that typically this much blood doesn’t sit in the stomach during a nosebleed; however, since Ian has the Nissen and vomiting is harder for him, it remains in the belly. Although, Ian wasn’t doing any retching overnight or today, but then again, he never really retched while he slept. Who knows? Hopefully, the next several hours will go smoothly and we can follow up next week with CHOP.
Ian is sleeping now and looks peaceful in his big bed here at the hospital. The room we are in is practically a suite and is brand new. The hospital completely remodeled the peds department and the room is wonderful. There is a full size pull out bed for parents, a separate kid’s and parents’ tv, along with a noise sleep machine, private kitchen area and closet space. We are trying to relax a bit now that things are stable and are hoping and praying the morning will bring good news. Thank you to everyone who has been praying for us. More news to come...