One year ago this weekend, I was in the hospital with a freak illness and Zack was home sick with a blizzard howling outside. It was crazy and scary and I hope to never go through that again. Happily our story has a good ending thanks to a great fire department, great neighbors, great doctors and great nurses. It was also the last time Zack was hospitalized. One year ago…..
One year without being hospitalized is something we had been dreaming about for three years. We can hardly believe it. So why am I not doing a happy dance? Why do I still have a feeling of dread in the pit of my stomach more days than not? Do I just need therapy? Most probably.
Just for my own record, I have decided to log what went on this past year. It is not a post full of new information. Writing helps me process things and I want to get all of this down to see if it might help me figure out what this annoying sense of unease is all about. Feel free to read on, but just remember that I told you….I am processing.
January – Zack was hospitalized with extremely low levels of sodium in his blood. In fact, when he arrived at the hospital he was admitted straight into the PICU. He spent ten days inpatient while the doctors tried to get his output and sodium levels under control. We started giving Zack CeraLyte in hopes of keeping his sodium in check. His output remained high with no explanation found. Still had random belly pain. He kept his PICC line from December. In fact, our neighbor/doctor friend was convinced his PICC line saved his life over the blizzard. Positive – Great neighbors, fire department, doctors and nurses.
February – Still in the hospital working on sodium. Later in the month he had another endoscopy, colonoscopy, biopsies, pancreatic stimulation test and lots of blood tests for weird and unusual things. During the scopes he had a new PICC line placed as his other one was accidentally pulled out of place during a dressing change. The new PICC line caused him to have PVC’s because it was too close to his heart. That was an easy fix the next day, but it still freaked us out a tiny bit. We continued weekly visits to Walter Reed for blood sodium level checks. Output remained high. Belly pain continued. Stoma was often enlarged. Positive – All of the tests for weird and unusual things came back negative.
March – Continued with weekly/bi-weekly blood sodium and urine sodium checks. Zack had a few weeks where his sodium level was decent. Began stool refeeding trial through Zack’s mucous fistula. It was not successful and resulted in lots of distention and pain. Output remained high. Belly pain continued. Stoma was often enlarged. Positive – We learned Zack’s colon was still unable to process stool. More confirmation that his colon does not work.
April – Same as March, but sodium levels are low again. Output still high. Belly pain continued. Zack often said he felt like he was going to prolapse again, but thankfully did not. Stoma was often enlarged. Positive – Zack participated in the Special Olympics and the entire second grade came to watch him!
May – PICC line removed. Sodium levels checked via blood and urine sample and remained low. Zack’s doctor felt we could manage things via urine checks alone. He was concerned that the risk of a line infection was greater than the need for his PICC at this point. High output and belly pain continued. Swollen stoma. Positive – Our family was able to help the Nathan Chris Baker foundation with their fun run by handing out water at the halfway point.
June – Low sodium. High output. Belly pain. Swollen stoma. Periods of no output. Positive – Spent lots of time swimming.
July – Low sodium. High output. Swollen stoma. Periods of no output. Positive – Zack got to have a summer doing normal kid things for the first time in three years.
August – Went to Boston Children’s Hospital to follow up with Zack’s surgeon and to get a feel for her new hospital before we have an urgent need. She works with one of the leading pediatric GI’s in the country and we met him as well. We were hopeful that he might be able to make sense of Zack’s belly. Theories were given. Maybe a weird auto-immune thing. Maybe eosinophilic ganglionitis. In reality, nobody knows. Boston really wanted his sodium and output better controlled and suggest adding Cholestyramine to his routine. Sodium remained low, output high. Belly pain and swollen stoma continued. Periods of no output still occurred. Positive – We took our first family vacation in three whole years!
September – More of the same. We met with Zack’s Walter Reed surgeon to catch him up on all that happened while he was deployed. Start Cholestyramine. Belly pain, high output and swollen stoma’s abound. Still had periods of no output. Positive – Zack was able to start karate (no sparring)!
October – Zack began to feel worse. Periods of no output for 8-9 hours are happening with more frequency. Stoma is getting very enlarged. Belly pain increased. Positive – Zack was able to walk the entire neighborhood this Halloween!
November – Zack was in pain often. Stoma prolapsed twice. Periods of no output with belly pain and then lots of output and relief occurred frequently. Doctors decide that Cholestyramine was the culprit and causing intermittent obstruction. Zack was taken off the drug and felt better right away. Output still high. Positive – Zack participated in the Turkey Trot at our local Y.
December – Met with Walter Reed GI. Zack gained weight. Yay. Sadly, not as much as the doctor would have liked. Overnight formula feed was increased. Zack’s doctor was waiting to hear from Boston about how to proceed with a steroid trial. High output continued. Doctor said we could stop urine samples and just assume that Zack’s levels are low. His sodium has been low for several years. Jim and I had been managing the levels pretty well with CeraLyte and sodium pills and know when Zack needs to be seen. Positive – We were home for Christmas this year and not in the hospital. We managed to keep a bottle of Tylenol in the house for more than a week. Zack felt mostly well this month. A true Christmas miracle!
January – High output. Probably low sodium. Belly pain. Periods of no output. This past week, Zack has prolapsed, had significant belly pain and stoma swelling. His belly hurt so badly on his birthday that he asked me to let his doctor know his pain level. I can only think of two other times that he has asked me to do that. When questioned about how often his belly was hurting, Zack said his belly hurt on Mondays, Tuesdays, Wednesdays, Thursdays, Fridays, Saturdays and Sundays. I guess that says a lot. Positive – Drew and Zack’s joint family birthday party.
I realize now that I have answered my own questions and understand where my unease is coming from. Zack still has unexplained medical issues. Interspersed with periods of his usual yuck, he has periods of time where he seems to feel pretty good. During those times I allow myself to think that we are past the worrying stage. I think about how many months he has managed to stay out of the hospital. I start to get excited about the possibility that we will be able to manage his life like this without anymore interventions. And then he prolapses and has belly pain and periods of no output. That old feeling of dread, which was almost gone, returns full force and causes me (and Jim) to wonder if we will be going back to the hospital, if he will need more surgery, if he will obstruct completely.
No wonder I cannot seem to shake this feeling. Will it ever leave? I hope so. After this past week, however, I do not think that will happen for a little while longer. Zack felt bad four out of seven days. Even so, Zack has improved over the past year. That is huge! Baby steps are still steps. Tonight I will be grateful for that. Tomorrow I will work on trying to worry less….yeah, right…..
Hug your babies!