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The PICU (Pediatric Intensive Care Unit)

My son Tom showed unexpected results while in the Pediatric unit of the hospital and was transferred to the PICU (Pediatric Intensive Care Unit). My son had previously been in the NICU for apnea - so the fact that he was sent to the PICU for bradicardia was a real shock.

While my son was in the NICU I had slept in a cottage provided by the hospital nearby. I was no longer able to stay in the cottages, so I slept on the couch (occasionally the floor) of the ICU waiting room. This was an accepted practice as the ICU Units did not allow overnight guests.

The hospital rotated Pediatricians every ten days - so Tom's next doctor knew nothing of his medical history. This caused some problems because we went through four different docs between the NICU, PICU, and Toms's return trip through the Pediatrics Ward. Each physician would read the data provided by the former doctor and then would decide how to proceed from there. There were a few small errors in the documentation - so each Physician would start from flawed data. Each Doctor had their own ideas of what might be wrong - so one week all testing would be focused on one area (such as a gastrointestinal problem). The next week the new Physician would be searching for problems in cardiology or looking for a neurological problem.

If we had known what was going on - we would have regularly observed our son's medical records. If you have any questions you go to your children's records with a Medical Dictionary before you ask those serious questions.

Our son's second physician (first was in the NICU) thought that Tom was having some kind of seizure. He wanted an EEG. I said that an EEG had been performed in the NICU and had come back normal. The Doc said that there had been something subtly abnormal and he wanted to check it again. This time the baby's EEG came back with questionable results, so the Physician ordered a video EEG.

A regular EEG for our son took about 20 minutes to hook up with wires, 20 minutes (max) to do the test, and three days to get with wire glue off of the babies head LOL.
Heavens knows an EEG isn't funny - but sometimes it's just better to laugh than cry, ya know?
A video EEG takes 24 hours to perform. After the wires went on, a video camera and monitor were set up to measure the baby during any abnormally low bradicardic spells. Unfortunately, the camera was manually activated. In other words, whenever the baby's heart rate went too low either I or the nurse would have to leap up to start the camera. I stared at the images on the monitor, trying to see if I could catch anything unusual (as if I knew what to look for). After the test was done we had to wait another 48 hours for the results. We were finally told that the baby did have an abnormal EEG - but that the abnormality didn't have anything to do with the bradicardia. The physicians were focusing on the bradicardia problem - and took no concern with the abnormal EEG as it had nothing to do with their search.

I later discovered that children with an abnormal EEG generally have seizures - usually starting by the time the child turns three years old. Tom has not had a seizure yet, but it would have been nice to know that it was something I should be looking for in my son's behavior. I discovered this piece of information from a neurologist nine months later.

*Test warning - the Doctors never test for more than a few things at a time. This makes a lot of sense - as the test results help to lead the Physicians to a logical diagnosis. Otherwise they would be putting your child through a bunch of tests they didn't need, and this can be both stressful to your baby and your wallet.
The only problem is that everything seems to take forever. It went like this for Tom:

  1. One day to read the results of the last test and to write up the next test deemed necessary.

  2. One day waiting for the test to be done if it was simple - two to three days wait for a more complicated procedure.

  3. Two days for the results.

And then the next test is thought up and it starts all over again. In short - nothing is simple. If they can't find an answer right away - it takes darn near forever. Try to stay informed and be patient. Easy to say but hard to do, right? ............right.

After the EEG results we got our next pediatrician. We spent several days waiting for her to get through Tom's growing medical records. The Doctor decided that Tom could have a cardiac problem - especially after his apneic episodes discussed on this page . A series of tests were then performed on Tom's heart. By the time all of the test results were in, we knew his heart and natural pacemaker were operating normally - and it was time for another Pediatrician. I really liked the candidness of this Doctor and was sad to see her go.

Pediatrician #4 went over all of the records and decided that Tom might be having a problem with acid reflux. I had no idea that heartburn could be so serious - but apparently this is a fairly common condition. He began ordering tests and quickly discovered that our son did have a very serious case of acid reflux. After a few more tests confirmed the severity of the condition, the Pediatrician and a surgeon sat down with my husband and I and explained what they felt needed to be done, and why.

They intended to narrow the opening into my son's stomach - basically creating a one way valve - where food could go in, but stomach acid wouldn't come out. This surgery is called a fundal plication (this spelling is completely bogus - and I hope I remember to fix this soon LOL). The surgeon, a gastroenterologist, wanted to place a G-tube coming out of Tom's abdomen. He felt that if the surgery wasn't completely successful in preventing Tom's bradicardia we could use the tube for feedings. I assumed that this was just a precaution - if only it had been! We were uncomfortable with having surgery done on our boy - but he was having so many problems and we just wanted him to get well enough to come home. We decided to have the surgery performed.

The Surgery

I have had trouble getting to this part of the page.
At the time - it was not a difficult decision to reach and I was confident in Tom's physician. This gastroenterologist is still quite popular with me as a matter of fact. In retrospect, he was the first Doc to be completely honest without holding back on information we needed. He explained the surgery in terms that were clear, he stated both the advantages and disadvantages to this procedure, and he gauged his responses neither above or below our comprehension level.

In short - he was an excellent physician.

Before performing the surgery, this physician took close to an hour to address our concerns. He explained that the surgery would tighten the top of Tom's stomach, blocking acid from going up his throat. This was the problem that was causing the bradicardia - the medical staff believed. The gastroenterologist explained all of the tests and their results that had led them to this conclusion. We agreed that severe acid reflux did seem to be the problem. The Doc went on to explain that there were a few side effects we needed to be aware of.
After the surgery - our son would no longer be able to vomit. Now this sounds like a blessing, but try to imagine having stomach flu and not being able to throw up. This condition might eventually stop - allowing him to vomit when he became older - in his mid-teens or so. The physician explained that he might not be able to vomit for the rest of his life. We questioned what would happen if he were not to have this procedure and were told that he would have to remain in the hospital until his bradicardia stopped. As this could continue for the rest of Tom's life we quickly decided that the surgery was an absolute necessity.
The Doc added that he would be placing a G-Tube (a tube directly into Tom's stomach, coming out of his abdomen) in case the surgery did not alleviate the problem. This way - we could feed Tommy by tube if necessary, right into his stomach.

We were told that this was just a precaution - as if the surgery wasn't 100% successful, they would have to do another surgery to place the G-tube. I (naively) assumed that Tom would not need this - and that the G-tube could be removed before we brought our baby home.

On the day of Tom's surgery I was really not scared. I was eager for his problem to be fixed so we could take him home. The baby was under five and a half lbs. and they brought a full sized gurney to take him to surgery.
It was a little odd following the gurney to the OR. Tom was so small - he hardly made a bump in the bed. I watched the gurney roll into the OR and sat down to wait. As I'd already been waiting for answers for many weeks - it just didn't seem like anything new.

After a little over an hour, I was told he was back in the PICU. The surgeon told me that all had gone well, and said I could visit Tom when the nurses had him settled in. A short time later I was brought back into the PICU where I joined Tom at his bedside.

It took three days to bring Tommy out of anesthesia. Every time he started to wake up - he had breathing problems. It was very stressful. I was really starting to be scared by the third day - and when they finally brought him out of anesthesia I was so grateful just to hold my son and see him looking back at me.

After Tom was awake a few days in the PICU it became apparent that the surgery had helped but it was not enough to completely alleviate the bradicardia. Tom's heart rate had been dropping into the high 20's (beat per minute) and now he only dropped into the 80's. As the normal BPM for an infant his size is 120-180 he was still in a dangerous area.

The nurses began feeding him via his G-tube and they trained me as they did so. It took several weeks to dial in the proper medications and find a formula that Tom's body would accept. Finally - the medical staff found a combination (lactose free) that the baby's body would accept and they moved Tom back to the pediatric unit.

I was able to stay with Tom 24 hours a day when he was returned to the pediatric unit - but it took me a while to get used to being able to hold him whenever I wanted to. After a few days in pediatrics, I discovered that he could sleep in my cot with me if I were willing to sign a consent form. I gladly did, and took my baby in my arms each night as I went to sleep. I was already emotionally tied to this boy - but nothing was sweeter than to hold my son in my arms as he drifted off to sleep.

As Tommy was still undiagnosed - the tests did not end here. There were still many questions and medical personnel still came to visit for blood samples and other tests frequently. After a few weeks in the pediatric ward, Tommy was finally cleared to go home - after receiving a transfusion of blood from his dad. Tom had lost so much blood from all of the tests - he was nearly white before the transfusion. We gladly packed our belongings and took our son home just in time for Thanksgiving.