Back to the Hospital-4

 

 On June 24th, only a day after Jeremy left the hospital, he gave us another reason to bring him back. The day started off like any other ordinary day. Brent was back to work, so I packed up the kids and headed over to my parents house. I figured it would be nice to have an extra pair of hands around. Jeremy was no different than usual, maybe a little sleepy, but I took this as a blessing. We relaxed and played, had dinner and then headed home to put Chloe to bed. At 1030 that night, after I fed Jeremy, he did a little cough. I looked at him to make sure he was ok and spotted a few blood specks on his lips. I called Brent and said that I was concerned. I thought maybe this happened sometimes when a child is intubated. Maybe their throats get irritated from having a tube in there. Brent thought I should call the hospital, just to be on the safe side. I called the unit that I work on and asked a nurse to pass on the information to the resident that happened to be on that night. She was concerned and told me to bring Jeremy in right away; this was not normal. Unfortunately Brent was already in Campbell River on an overnight for work. Leaving the two older kids in the care of Brent's mom, Courtney and I piled in the van with Jeremy and headed for the hospital. Jeremy seemed fine and unfazed by everything as he slept through all of the commotion.
     Enroute to the hospital Jeremy coughed again and this time it was alarming. There was a lot of blood. It was all over his face, blanket and car seat. The blood was red and fresh, and there was also blood that looked like coffee grounds. This meant that he was no longer coughing up blood, he was vomiting blood and that there was likely an acute and severe upper gastrointestinal bleed. Courtney began to drive faster as we were starting to panic. As soon as we stepped foot into the emergency department, the admitting nurse took one look at us and immediately took us into one of the rooms. We could not wait to be triaged, there was no time. Jeremy was pale, listless, and was not only losing blood via his mouth, but we also discovered large amounts of blood in his diaper. Jeremy was pumped with IV fluids, and after receiving 5 blood transfusions and 3 blood product transfusions, he began to look a little bit better. We were also transferred to the ICU where he could be closely monitored. Courtney, knowing that Brent was unable to come home that night, and unwilling to leave her little nephew's side, kept vigil at his bedside all night. I sneaked upstairs to my unit and forced myself to sleep for about 2 hours. By 0800 in the morning the next day, Brent was finally able to get back to Vancouver. He drove straight to the hospital.
     They intubated Jeremy again and then did a CT scan of the rest of Jeremy's body and determined that there were no other masses. For the time being, the bleeding ceased. They also put in an arterial line (an IV in the artery in his right forearm) that was connected to a machine that monitored his blood pressure continuously. This line also provided an access for blood work so that he wouldn't have to keep getting poked. At this point they were doing blood work every couple of hours.
     There was so much going on at once, Brent and I were overwhelmed and reeling with all that was happening. How can a baby this small handle all of this? Brent and I were both staying at the hospital because we did not want to leave Jeremy's side. Nana and grampa came in with Chloe so we could get a little dose of positive energy from our little miss sunshine.

     The following day a gastroenterologist did an endoscopy and discovered that there was a large mass on the fundus (the top portion) of Jeremy's stomach. They figured it was a stress ulcer brought on by the MRI that was performed on the 22nd. He didn't handle that procedure so well, so they thought his body was having a physical reaction to the overload of stress that it had on his tiny body. They cauterized the mass and started Jeremy on Pantoprazole which is a medication prescribed for people with GERD, meant to prevent reflux.
    On the night of the 26th, Brent and I went home to make sure that we would be well-rested for the big day ahead of us. The next day he was going to have the mass removed from under his arm. This procedure would be two part. The first part would involve an embolization to cut off some of the blood flow in the surrounding veins and arteries. The second part would be the actual removal of the mass. We knew that this day would be long, tedious, and difficult. We were told to expect the day to take a long time, we had not prepared ourselves to have the day take 8 hours.
     It was decided that three doctors would be performing surgery on Jeremy. One doctor would be the plastic/vascular surgeon who we already knew and were completely comfortable with. The other two doctors consisted of a radiologist and a cardiologist. Each doctor had an impeccable reputation. Each surgeon also took the time to meet with us, give us a brief history of their background and explain what role they would play in terms of the surgery. We felt that Jeremy was in excellent hands and the doctors were willing to do absolutely anything to make sure everything went smoothly.
     The radiologist completed the first portion of the surgery in approximately 4 hours with no complications. After inserting a line in Jeremy's left femoral artery, the doctor used this line to go up in the area under his left armpit and around his heart. The veins and arteries that were supplying a large portion of blood to the heart were clamped. The second portion was completed by the cardiologist who could manage the heart aspect of things and the vascular surgeon who would work to remove the mass. As the doctor went to remove the mass, he soon discovered that it's walls were paper thin. Having supported such a large volume of blood for so long, the walls were stretched so thin that with the tiniest amount of pressure on it would cause it to burst. And that it did. Jeremy lost 1 litre of blood. Babies of his age and size only carry 300 mls of blood, this means that as fast as they were pumping new blood into his body, he was pumping it out. The mass was pulled out as quickly as possible.

The surgery was started at 0800 that morning and at 1700, he was ready to come back to the ICU.

Sedated and intubated

     As one can imagine, this surgery had quite an effect on Jeremy's poor little body. Because they had to move much faster than anticipated, some nerve damage was done to his pectoral and scapular muscles. There was the possibility that Jeremy would have no or less range of motion to his right arm and shoulder. His blood pressure was quite high at 110/60, and his temperature was only 35.0 (normal range is 35.8-38.3). He was given morphine and warm blankets which helped to slowly elevate his temp and lower his BP. He was intubated, catheterized for urine output, had a nasogastric tube in for removing secretions from his abdomen (of which they were regularly removing thick yellow secretions), had two peripheral intravenous lines, one in his right arm and one in his right leg, a femoral line, one arterial line, and a drain on his left side to remove bloody secretions from the surgery. His limbs were very puffy, one nurse mentioned that Jeremy had gained an extra kilogram just from the surgery itself. He no longer looked like our little baby boy. I could only imagine what pain and discomfort he was in. The only thing that could get me through this was that in the end, Jeremy would be better. Babies are resilient, I can now testify to this.

Our poor unrecognizable baby, with all of his tubes and the extra kilogram of fluid on board.

     After all was said and done, the vascular surgeon came and spoke to us. After getting a better look at the mass he figured it was an aneurysm with a very large free floating clot. Had the mass ruptured at home, we would have lost Jeremy. The surgeon stressed that he had never seen anything like this before and even looked through his literature, but could find nothing written up on what he had seen. He decided it would be best to send the mass off to pathology so that they could determine exactly what it was.
     The next day Jeremy was taken off his Morphine and started on Tylenol as needed. The following day he was completely able to breathe on his own so he was extubated. With the help of Lasix, a diuretic, Jeremy had a total ouput of 695mls. He was starting to get less puffy, and looking more like himself. The foley catheter came out and Jeremy was able to void on his own. By June 29th, two days after surgery, Jeremy was alert with his eyes wide open,  looking around. He also started to move his left arm around spontaneously, something we thought wouldn't happen. On June 30th the femoral line came out and Jeremy made the move out of the ICU and up to the 3rd floor. This meant that Jeremy no longer needed one on one nursing care and he was getting ready to go home. He was bottle feeding and breastfeeding as much as he liked and that he did! The following day we went home and were prepared to never set foot in Children's as patients again.

Jeremy looking oh so peaceful all snug in his crib on the 3rd floor