There was no green emesis this time but triage still put us as a priority given Josh's history so we were seen by a doctor within 15 minutes. During the doctor's assessment it was discovered that Josh had an inguinal hernia. Again general surgery was consulted and though they agreed that he did in fact have a hernia (which will eventually require surgery to correct) they said that it was easily reducible and so not the cause of his symptoms. They still did not feel that he had a bowel obstruction. They said that he was just having reflux and gave us a prescription for ranitidine.
Not much else was done during that visit to emerg. They kept us there for several hours for observation to make sure that he was breastfeeding and keeping most of his intake down. Between 1700 and 2100 I fed Josh three times and he kept two of the three feedings down. And so we were sent home.
Josh ate again around 2200 and then we both went to bed. It was a very rough night. Josh was spitting up small amounts of fluid all night long (in his sleep) and I was scared to lay him down in his crib in case he choked. I propped him up on my nursing pillow beside me in the bed and watched him all night long - wiping his mouth clean every time he spit up. He didn't breastfeed at all that night (which was very unusual for him) so at 0415 I woke him up because it was time for his phenobarb and I wanted him to try and eat. Robb had to leave for work at 0430 and I figured that if Josh wouldn't breastfeed (and keep it down) I would have Robb drop us off at CHEO before heading to work.
Just as I finished changing Josh's diaper and sat him up he vomited a large amount (like maybe 2 oz) of bile. I managed to collect most of the vomit in a blanket, so I threw the blanket in a plastic bag got our stuff together and headed back to CHEO. So 8 hours after being sent home we were back at the triage desk in emerg.
General surgery was consulted...again...and after seeing the blanket soiled with bile decided that the possibility of a bowel obstruction needed to be re-examined. An NG tube was reinserted but no IV was started. I questioned this decision since Josh was not able to receive anything by mouth and truthfully he hadn't been eating well the last couple of days, but they assured me that Josh did not need IV fluids at this time.
Later in the day an abdominal ultrasound was done - the results of which came back normal. So, general surgery ordered an enema with contrast to take a look at the large intestine. As we were waiting for the second diagnostic test I kept asking, pleading even, with any one that would listen to start Josh on an IV. It was mid afternoon and he had nothing to eat all day and he hadn't voided since 1000, but everyone I talked to told me that he wasn't showing any signs of dehydration - he's fine. Arggg! I was so frustrated! I couldn't find anyone to take my concerns seriously.
Around 1600 Josh and I headed to radiology for the final diagnostic test. Dr. Betolli (the general surgeon on-call that day) had told us that if this test came back normal Josh's symptoms did not require surgical intervention and he would pass us off to medicine for them to try and figure out what was going on. I really didn't want Josh to go through another surgery but at this point I just wanted answers. I desperately wanted somebody to find something wrong so that we could fix it.
When Josh and I entered the radiology room where the test would be performed the technician was surprised that Josh didn't have an IV. I explained that I agreed he should definitely be on IV fluids but nobody in emerg agreed with me. I placed Josh on the table and they began the test. When the test was completed the technician told me that the large intestine looked normal and so she suspected that the problem was in the small intestine. I told her that they had already examined the small intestine last week with an upper GI series but that test also came back normal. She then told me that she had reviewed that test and the results were not normal. She said that there was dilation of the small intestine just before the cecum which is an indication of a bowel obstruction. Bloody hell! Can you believe that those results had been sitting in his chart for almost a week while Josh was left to suffer through unimaginable pain and discomfort? Oh man, there were no words to express my frustration.
I asked the technician to please inform general surgery of her impression of the upper GI series and make them re-look at the images when she gives them the results of this test. She agreed and so Josh and I headed back to emerg.
Shortly after returning to our room in emerg it was clear that the radiologist came through for me. Dr. Betolli now felt that there was a problem in Josh's small intestine but none of the tests were conclusive so he would do an exploratory surgery of sorts to look for and correct any problems. He also decided to start Josh on some IV fluids (Yay!). The IV was finally started at 1700 - 12 hours after we first arrived in emerg. They gave Josh an 80 ml bolus of fluid and then put him on 25 ml /hour as maintenance. [Incidentally I managed to sneak a peek at Josh's intake and output record early the next morning and Josh had received 400 ml of fluid since the IV had been started, but had only voided 60 ml of urine. Obviously his body was quite dry.]
At 2100, after spending 16 hours in emerg, Josh was finally admitted to the surgical floor. Amazingly, Josh slept through the night (maybe he sensed that he was finally getting the help that he so desperately needed) and so I too was able to get some much needed sleep.
Thursday morning Josh was put on the OR list and at 1350 we got the call that there was an OR available and Josh was going for surgery. They came up right away to get Josh and we headed to the operating room. And so for the second time in three weeks I kissed my baby goodbye as he was whisked away into the depths of the surgical suite. This time I was left standing there all alone, wiping away tears and finding my way to the surgical waiting room. My mom was back in Vancouver, Robb was at work, my son was in surgery, and I was alone.
Dr. Betolli had said that the surgery should take no more than 2 hours. Josh went in at 1400 so I figured that by 1630 he should be done. When 1630 came and went with no word on how the surgery was going I started to get nervous. By 1645 my anxiety was increasing with each passing minute. At 1700 I thought I would lose my mind. I really began to appreciate those frequent updates that we got from Tara during Josh's heart surgery. Finally at 1715 I saw Dr. Betolli walking down the hall. I sprung from my seat and met with him for an update.
Thankfully, the surgery went well. He said that the surgery confirmed that Josh did indeed have NEC (necrotizing enterocolitis) several weeks ago when he was in the PICU. You may recall that the PICU docs suspected NEC but could never confirm the diagnosis. The NEC had caused Josh's bowel to perforate in two places and it was the spillage of the intestinal contents into his abdominal cavity that had caused the outbreak of cellulitis on his abdomen.
Anyway, Josh did in fact have a partial bowel obstruction of the small intestine, just before the cecum. Dr. Betolli admitted to me that after opening Josh's abdomen he initially had no idea what he was looking at. He said that the first thing he saw was a twisted mess of bowel and it wasn't until he found the appendix in that twisted ball of intestine that he even knew what section of the bowel he was dealing with.
The reason that stool was still able to pass is that as the first perforation healed it formed a fistula (an abnormal connection) with the large intestine. As the second perforation healed it fused the twisted mass of bowel to the abdominal wall.
Obviously Dr. Betolli had to resect the bowel to remove this damaged area. He removed about 3 cm of small bowel, the cecum, the appendix and 2 cm of large bowel. He said the rest of the bowel looked good, he didn't see any lesions or any other problems and he didn't suspect that Josh would have any long term issues with his bowels, but he said that only time will tell. A short time later I was able to sit with Josh in the recovery room and after about a half an hour we were taken back to the surgical floor.
The first few days after surgery were rough. Josh was in so much discomfort - he was so gassy and his belly was very distended. He didn't even like to be held or cuddled (I guess the handling only added to his discomfort) so I reverted to holding his hand and stroking his head in hopes that my little cuddle bunny would return once again.
Trying to keep Josh happy those first few days after surgery was a bit of a challenge, initially because of his discomfort and then [once he started to feel better] because he wasn't allowed to eat anything. The first day after surgery Josh's nurse brought him a vibrating chair to sit in to see if that would help settle him. It worked like a charm, he loved that vibrating chair! He ended up losing that chair later in the day to another baby so we tried him in a swing instead. He liked the swing, but not nearly as much as he liked the chair.
By the third day post-op it was evident that Josh's pain and discomfort and subsided significantly. His abdominal girth was now 34cm - a far cry from a whopping 42cm after surgery. And I'm happy to report that my cuddle bunny had returned! I could hold him and cuddle him as much as I pleased with nary a protest from my little man.
The only protesting that day was due to his inability to eat. Josh hadn't eaten anything since October 23 and it was now October 28. He went 5 days without any food and truthfully he hadn't really been eating well the days preceding his hospitalization. By his 5th day without food Josh was understandably grumpy, but he wasn't nearly as bad as I thought he would be. He handled the whole situation like a trooper.
To help try and distract him from the fact that he couldn't eat I would often bundle him into a stroller and take him for little walks around the unit, IV pole in tow. He loved it! It gave him a change of scenery and he loved to sit and watch the other people move about.
Come Monday morning (Oct. 29th) Josh was finally given the go ahead by Dr. Betolli to start eating again. We started him out slow since his tummy had gone 5 days without food and we needed to make sure that his gut wouldn't react to the re-introduction of food. I bottle fed Josh that day with my expressed breast milk so that I could control how much milk he was getting. His first bottle was only 15 ml. He was pretty angry when the bottle was empty and he realized he wasn't getting any more. He was actually much more irritable on the Monday than he had been over the weekend because now he was getting a taste for food again and he couldn't understand why I was only giving him such a small amount. I felt bad for him. I wanted to secretly give him more, but I knew that it was important not to push his gut too hard.I was able to give him a bottle every 3-4 hours, each one 10 ml more than the one previous. The feedings over the course of the day went well, his abdominal girth did not increase and he was passing stool so I was able to resume breastfeeding on Tuesday. Josh had been breastfeeding well so his IV was removed and once again I wasted no time in getting him dressed in a sleeper. I actually gave him a bath first, and then weighed him (he was only 8.9 lbs at 2 months old - he had lost more than 1/2 lb during this hospitalization) and then I dressed my fresh little man in his sleeper.
A few hours later we were given the good news that Josh was being discharged. So around 1730 on Tuesday October 30, after all the paper work was completed, Josh and I headed home after spending the last week in hospital. And we made it home just in time for Halloween!
His discharge medications were the same as after his heart surgery, minus the Lasix as that had run it's course. So phenobarb and ranitidine every 8 hours and the enoxaparin injection every 12 hours. The enoxaparin had been held for three days because of the surgery and as a result hematology kept titrating his doses trying to get the medication back in a therapeutic range. Unfortunately that meant a lot of blood work.
We actually had to go back to CHEO on the Wednesday morning (Oct. 31) for blood work and then Josh had an appointment in the thrombosis clinic that afternoon. So we ended up spending the whole day there but we made the most of it. I dressed Josh up in a Tigger costume that my mom had picked up for him when she was here and he looked oh so cute! He even got to go Trick-or-Treating. The different departments of the hospital each had a station set up full of goodies and toys for the kids to go around and trick-or-treat. Josh hit a couple of the stations and got a few little goodies of his own. All in all it was a good day.
We actually had to go back to CHEO on the Wednesday morning (Oct. 31) for blood work and then Josh had an appointment in the thrombosis clinic that afternoon. So we ended up spending the whole day there but we made the most of it. I dressed Josh up in a Tigger costume that my mom had picked up for him when she was here and he looked oh so cute! He even got to go Trick-or-Treating. The different departments of the hospital each had a station set up full of goodies and toys for the kids to go around and trick-or-treat. Josh hit a couple of the stations and got a few little goodies of his own. All in all it was a good day.
Josh had to go back for blood work that Friday and then again the following Monday, but after that things seemed to settle down and we were finally able to settle into our own routine. Life was good!
I want to take this opportunity to thank everyone who offered prayers and words of support for Josh and our family during this whole experience. I know a lot of prayers were sent on Josh's behalf and I want to thank you all. Clearly those prayers were answered!
I also want to thank all of my co-workers at the Civic Hospital whose undying support, kindness and generosity touched me deeply. I feel so lucky to work with such a great group of people whose care and compassion knows no bounds.
And finally I want to once again thank all of the incredible staff at CHEO. You all took such good care of Josh and I will be forever grateful for all that was done for him. CHEO is a very special place full of very special people. Thank-you!
Joshua's story is just about finished. This certainly completes the bulk of his story but there's one more chapter to come just to summarize his progress since his last discharge. Stay tuned....
No comments:
Post a Comment