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

Our First Scare-3

 
 On June 14th Jeremy had his first follow-up appointment. This mass under his arm appeared to be growing and the doctor was questioning whether it was a blood clot. He decided it would be best to do an MRI to determine what exactly was under Jeremy's arm. The MRI was booked for June 22 at 1145. After speaking with the anesthetist, as a routine procedure, we figured this MRI would not be much of a big deal and that Jeremy would sleep comfortably through the whole thing and then we would go home after and await his results.
     Unfortunately, things are not always so easy with Jeremy. At 18 days old, he was already an adrenaline junkie. He did go in for his MRI as planned. But instead of taking 20 minutes like we were told, it took them 2 1/2 hours to complete the MRI. Brent and I anxiously paced the hospital grounds as we awaited results. We were told that Jeremy did not tolerate the procedure of being lightly sedated. He desatted to the low 80's (this is your oxygen saturation, meaning the oxygen circulating his body was not at 96-100% where it should be) and his blood pressure dropped significantly. Jeremy had to be intubated and was put on a ventilator. It was shocking to see our tiny baby with a huge tube coming out of his mouth and for him to be unresponsive.
     We were also told that the MRI showed that the mass was growing and the involvement with his heart was getting greater. Fifty percent of the blood was being shunted back through this mass via a major artery, instead of circulating through his body. This was causing Jeremy to get an enlarged heart as it worked ever the harder to try to keep up.
     After spending a long night in the ICU, we took Jeremy home with plans to bring him back to the hospital on the 30th of June to have the mass removed. It was decided that since the mass now had so much involvement with his heart, it would be better to do surgery.

At Home--written by Jeremy-2

 

 I finally got to go home and soon realized that I had quite the neat little family life set up for myself there. What a cool place! It was weird not having somebody poke and prod me every hour of everyday. Chloe sure was crazy and so fun to watch! I also discovered something else: not only did I live with my mommy, daddy, sister and kitty Toby, but I also had another family upstairs! My aunty Courtney, uncle Dave, cousin Owen and their puppy Lucy all shared a house with us. So, in these days home I enjoyed lots of time playing and hanging out with my family, and also visiting with friends and other relatives. These days were filled with loved ones and lots of fun, we all thoroughly enjoyed it.
    First things first, we had a celebration! June 09th was Owen's birthday. He turned two so we had a party and everyone had a blast!

     We went to the park and I watched everyone play at the playground

     I hung out a lot on mom and dad's bed

     and in my car seat

     I actually got really acquainted with my new friend Sleep

      Had lots of cuddles, here I'm with my mom's sister, aunty Tanya and my mom's friend, aunty Sarah

Had bath time with Chloe's supervision (didn't like it so much)

And was introduced to the world of cars. Apparently Owen is willing to share his stash with me (Chloe's off limits)

   

The Beginning-1

A friend told me that the elephant symbolizes strength, honor, stability and patience. It is believed that they bulldoze obstacles and carry heavy burdens on your behalf. This blog is Jeremy's elephant, and there is a story to be told.

The other day I heard myself telling another person that my son had cancer. It was then that I realized I had come out and said it publicly. My beautiful baby boy has an illness that terrifies me. For many months I cocooned  myself and my son in our little "safe" world. I only told a small group of  people about this thing that had taken over our lives and turned it upside down. I thought that I was protecting my son and our perfect little family. This worked at the time, but now I feel ready to tell the rest of the world and to give people the opportunity to meet our amazing little man.

Brand new baby, just minutes old!

Born June 04, 2011 at 1037 pm, Jeremy Matthew Rice waited for the very animated 2nd playoff game to be finished before he decided it was time to head to Peace Arch Hospital and say hello to the world. He was a perfect little bouncing baby boy, with all fingers and toes accounted for. He even had a little extra poundage, weighing in at 8 pounds 4 ounces. There was only one problem, there was a mass under his left armpit the size of a small plum. An X-ray was done and came back inconclusive. The pediatrician on call that night felt it best to be transferred to Children's Hospital so that they could do an ultrasound and possibly other testing. At 1230 on Sunday, both mom and son took their first ambulance ride.

 

               Our ride in the ambulance, Jeremy slept in his incubator and didn't even notice! He slept through the whole thing!

We were admitted to the NICU because of course Jeremy was a neonate and it was the only place they saw fit for him to go. All the nurses didn't know what to do with him! He wasn't premature,or failure to thrive and he was breastfeeding instead of being tube fed. He actually appeared to be quite uncomplicated and far too "healthy" for the NICU. For our sake and theirs, the nurses felt we would be more comfortable in our own room. This way we could do what ever when ever, but I could not leave the NICU with my baby. This was a bit frustrating and surreal. For the first time, as a nurse myself at BCCH, I was getting the view from the other side of the lens; getting a real feel of what many other families and patients that I've cared for, go through.

Little Jeremy hanging out on mommy's bed

We were referred to a plastics/vascular surgeon. He did an ultrasound of this lump and discovered that there actually was a fair amount of blood flow between the lump and Jeremy's heart. Not too concerning at the time, but interesting. He did an echo of the lump and also palpated it and thought that because it was formed but soft, it presented as a hemangioma. Still, no one thought anything of this. Chloe has two hemangiomas, one on her left knee which has pretty much disappeared and one on her right shoulder blade which should be completely gone by about age five. He started Jeremy on a medication called Propanolol that was to be given orally and would help to shrink the hemangioma. Because Jeremy was exclusively breastfed, I was the one to stay at the hospital. I missed Brent (my husband) and Chloe (my daughter) terribly, not to mention my hormones were all over the place having just given birth. Even though we were only at the hospital for five days, it felt like the longest days of my life. Our perfect little boy was sick and it was out of our hands. Luckily we had Chloe, our daughter and ray of sunshine, to keep us focused on what was important in our lives: love and family.  Her and daddy came to visit everyday. Chloe just adored her little brother!

   

Chloe holding her baby brother and saying "hello"

Finally we were discharged home. We were to come back weekly for follow-up appointments.

Tucking Jeremy in his carseat so that we can go home!!

On June 9th, we all loaded up in the minivan and headed home. We thought the worst was behind us and now we would all be able to enjoy our little newborn.