CHAPTER 9 : The First Two Weeks At Home

Having Josh at home was great! He had been discharged on Sunday October 7, which was the day before Thanksgiving Monday. We really couldn't believe that he made it home before Thanksgiving - we certainly had a lot to be thankful for.

Caring for a 6 week old after open heart surgery was a lot like caring for a newborn except Robb and I were more anxious. I was anxious about the whole breastfeeding thing (Was he feeding effectively? Was he eating enough? Was he gaining weight? That sort of thing.) Robb was anxious about his heart. He was convinced that if he handled him improperly his heart would "come apart". But despite our anxieties we got through it.

I was actually surprised at how easy it was to care for Josh after the surgery. There really wasn't anything special that I needed to do for the incision except to keep it dry. There was no dressing on it or anything and I was still able to bathe him, but I had to take extra care to ensure that the incision wasn't wet for more than 5 minutes. I couldn't put any lotions or powders on the incision for 8 weeks and we couldn't pick him up under the arms for 6 weeks. Picking him up under the arms put too much pressure on his healing sternum. This wasn't too difficult to abide by because of his small size, but I could certainly see how it would be more of a challenge with the toddlers that have to go through open heart surgery. That was it as far as the restrictions went but there would have been more restrictions if Josh had been older.

During that first week at home we had to go to CHEO three times for follow-up appointments. On Tuesday we were there for an echo, on Wednesday we were there for blood work and then an appointment in the thrombosis clinic and on Friday we were there for chest x-rays and a follow-up appointment with Dr. Maharajh. It made for a pretty busy week on top of trying to adjust to life back at home, but of course I was grateful that Josh was receiving top notch care. It also helped that Josh would get weighed at each visit so I could keep close tabs on whether or not he was gaining weight. I was glad that I was able to continue breastfeeding but it really bothered me that I had no idea how much milk Josh was taking. I never knew if he was getting enough. It would drive me crazy.

To give myself some piece of mind I started weighing all of his diapers and then calculating how much urine he was voiding each day. This at least gave me some idea of how much he was drinking. This might sound a little over the top but I even went so far as to calculate how many ml of urine he passed per kg of body weight per hour. And this wasn't something I did for a couple of weeks - I did it for months and months. Oh the things we do for our heart kids!

Anyway, Josh was gaining weight and Dr. Maharajh was pleased with Josh's echo so everything looked on track. I found Josh was pretty irritable but he did just go through heart surgery so I figured it was par for the course. He wasn't crying or cranky constantly but he would certainly have his moments.

The start of the second week at home was much calmer. We had to go to CHEO on Wednesday for blood work and an appointment at the Thrombosis clinic but other than that, there were no other scheduled appointments. On Thursday October 18 I noticed a change in Josh. He was sleeping a lot more than usual, he would still breastfeed but not as often and for not as long as he had been, and something just seemed off. Naturally that sense of worry set in early but there wasn't really any signs of anything serious enough to warrant a trip to emerg. His output was still okay, he wasn't showing any signs of distress, he didn't have a fever, and his colour was good.

Around 1830, I had just finished breastfeeding Josh and maybe 10 minutes later he vomited a large amount of yellow fluid. 5 minutes later he vomited again. That was enough for me - time to go to CHEO. Something was going on; I wasn't sure what but this time I wasn't taking any chances.

There was only a couple of people in the line ahead of us in emerg. While we were waiting Josh vomited again, but this time it was a very small amount and it was green. I didn't catch all of it in my face cloth - some stained the collar of his sleeper. When it was our turn with the triage nurse I introduced Josh and gave a brief history of his previous admission and explained what had brought us to emerg on this occasion. When the nurse looked at Josh she noticed his stained collar and stopped the assessment and took us into the resus room (oh man, not again...).

The nurse told me that green vomit (it's actually bile) is an indication of a bowel obstruction and a doctor would be right in to see him. I couldn't believe it. How much more did my poor boy have to go through? Hadn't he been through enough already?

The doctor came in and ordered a bunch of blood work as well as IV fluids and an NG tube. After spending 4 weeks in the ICU and receiving countless IV's and pokes for blood work, Josh had very few usable veins left. I think it took 5 blood draw attempts before they got enough blood for all the tests they needed to do. And then they still had to get an IV in. It was horrible. Josh was screaming the whole time.

Once the IV was in, I was holding Josh when I noticed that his tummy was really distended and something would periodically bulge out of his stomach. General surgery had been consulted to query the possibility of a bowel obstruction so when the surgeon arrived I brought this to his attention. He told me the bulges that I was seeing was actually his intestines. When I looked closely I could actually see the twitching of the intestines (peristalsis) as it bulged through his stomach. I felt the pit in the bottom of my stomach grow as I imagined the amount of pain and discomfort Josh must have been in.

The surgeon on call that night was Dr. Bass. He told us that he had examined all of Josh's past X-rays from the ICU and he noticed some irregularities on some of the images that had him concerned. He suspected that there was indeed something going on with his bowels and that Josh will likely require surgery at some point, it's just a matter of when.

The first thing Dr. Bass wanted to do was a upper GI series with barium. He wanted to first find out if Josh had malrotation of the small intestine, which if he did would require immediate emergency surgery. If Josh didn't have malrotation then the barium would be followed through the intestines with periodic x-rays to check for an obstruction.

I should mention that at this point Josh was still passing stool but the volume of stool with each movement was decreased. Also I had noticed that his bowel sounds were really loud. You didn't even need a stethoscope to hear them, you could easily hear his tummy grumbling.

I don't remember exactly what time they took Josh to begin the upper GI series. I think it was around 0200. The initial images after the barium was put through Josh's NG tube ruled out malrotation so emergency surgery was not needed. (Phew!) But Josh did need to be admitted so they could follow the barium through the small bowel to check for obstructions. He was to receive another x-ray at 0700 and then a third at 1200. Dr. Bass had wanted Josh to be admitted into the ICU but the ICU doc came down to assess him and determined that he was not a candidate for ICU. Then Dr. Bass said okay Josh will go to the surgical floor but he wanted him in a monitored room (meaning a nurse is always present in the room) with one-to-one care. The surgical floor said no, monitored rooms are two-to-one care. Dr. Bass reluctantly agreed. I was impressed at how hard he was fighting for our little guy, but at that same time it concerned me that he was so adamant that Josh be monitored so closely. Just how serious was this? It was pretty scary.

Josh was finally admitted to the surgical floor at 0400. I obviously had not slept at all and was looking forward to getting a few hours of sleep on the ward. Once we got settled in our room (Josh was fast asleep) I went to go pump some milk - yeah, back to pumping - Josh wasn't allowed to eat anything. When I returned I was hoping to get some sleep, but no such luck. The nurse was there and needed Josh's medical history so she could fill out the kardex. Once that was finished I think I did get to lay down for a little while before Josh woke up, but I don't think I really got any sleep.

At 0700 they took Josh down for his second X-ray and about an hour later we found out that the barium was still moving through - so far no obstructions.That morning was pretty quiet, just basically waiting to complete the upper GI series. A few of the ICU docs had heard that Josh had been readmitted so they stopped by to say hello. I thought it was so sweet that they took the time to come by and see him. It just goes to show you how great the staff at CHEO really are.

At 1200 Josh went down for his third and final X-ray. We were anxious to get the results and to find out if he was in fact obstructed, but unfortunately I think the surgeon was in surgery because we had to wait a long time before hearing the results.

While we were waiting Cardiology came by and cleared Josh for surgery - should he need it. They said that Josh had such a good surgical repair and his heart is doing so well that they didn't expect any problems should general surgery need to perform a surgical intervention.

The surgeon following Josh's case on Friday (and the weekend) wasn't Dr. Bass. Unfortunately Dr. Bass was off that weekend so somebody else took over. I won't mention who because I was less than impressed with him. He finally came by to see us around 1730, and then he didn't even bother to tell us the results of the X-ray! He just gave the nurse some orders and left. After I began to protest the nurse ran after him and asked him to come back and speak with us. I asked him what the last x-ray showed and he said that the barium travelled through the small bowel so there was no obstruction. He said that there was slow gastric emptying but he had no idea why and basically had no explanation for any of Josh's symptoms. He said that they would continue to monitor Josh overnight and then the next morning I could probably start breastfeeding him again.

I was relieved that Josh didn't need another surgery but the fact that they had no idea why his tummy was so distended or why he vomited bile or why his intestines had been bulging through his tummy really bothered me. Sure all these symptoms had since subsided but Josh hadn't eaten anything either. I was worried that the symptoms would reappear once he started eating again.

The next morning around 0830, the surgical team came by and told the nurse that she could remove the NG tube and I could resume breastfeeding. Josh was so happy! I had never seen him tackle a feeding with so much voracity. He was so hungry.

Josh continued to breastfeed well throughout the day and there were no episodes of vomiting so we were discharged around 1500 that afternoon. I was glad to be taking Josh back home but it still bothered me that there was no explanation for his symptoms.