Last Thursday afternoon I was disconnecting Joshua from his tubing around 3 pm like I do every day. I always check for blood return from the PICC line to verify the IV is working properly during the heparin lock procedure. When I pulled back on the line, I felt a lot of pressure and did not get blood return. I started making calls to the home health care company and eventually received a call from our GI nurse at Egleston advising us to take Joshua to the Egleston ER immediately. Joshua is supposed to be off his fluids for 5 hours a day only so once he is disconnected the clock starts ticking. Since I couldn't get blood return from the IV, I may not have been able to infuse fluids into it at 8 pm that night. The nurse said our local ER would not know what to do with a pediatric PICC line in an infant and said it would be easier and faster to come to Egleston. We arrived at the ER around 6 pm that evening which seemed like plenty of time to either resolve the issue with his PICC line or start a new IV so he could get clear fluids by 8 pm. Boy was I wrong!
I have the highest regard for the CHOA Egleston NICU, surgical staff, and just about every other department, staff member, and volunteer I have encountered there so I was not worried about the care Josh would receive in the ER. I had no idea how different our experience in the ER and overflow area on the 6th floor would be. The admission process went quickly and we were promptly ushered into a triage room in the ER where we would sit for over 5 hours trying to convince someone that Joshua needed to be put on fluids and admitted as soon as possible. We received one visit from a doctor early on in the process and never saw her again. Even after Joshua had a stool with a significant amount of blood in it and the nurse told us she would have the doctor come look at it, the doctor never stepped through the doorway again. Finally around 10 pm I was getting frantic that Josh was still not on fluids and there did not seem to be a plan to work on his IV, I tracked down the doctor behind her computer screen and asked her what was going on. She flippantly replied that yes, he was going to get a new IV and be admitted but she had not had time to tell me. It still took another hour before fluids were administered and another two before we were moved to our room in the overflow area on the 6th floor.
We spent two uncomfortable nights in a tiny room waiting and waiting to have a doctor visit to tell us what was going on. After not being able to get blood return in the ER, Josh's PICC line started functioning properly all of a sudden. He had a chest x ray in the ER that we eventually discovered (with the help of a family friend and PICC nurse - thank you Suzi!) Josh's PICC line had moved 2-3 cm and is no longer considered "central". It is now a peripheral line since it is in his shoulder instead of right near his heart. The line is not out 2-3 cm at the insertion site in his arm, though, so that 2-3 cm of line is scrunched somewhere in his arm. This is thought to be the cause of the line malfunction and the source of pain for Joshua when the line was being flushed - it is a positional issue with the line that could easily come back again. Right now the line is working well, but I am so worried we are going to have the same problem again and there is no way to predict when that will happen. I absolutely do not want to go through that terrible ER experience again! At least this time I will know I have to be specific and forceful in my attempts to get what I know to be proper care for my son.
We have had multiple nurses and doctors recommend having Joshua go through surgery to have a broviac chest tube inserted. The broviac is a more stable and better long term option for Josh since it is surgically implanted. Once Josh starts crawling, the PICC line placement in his arm will be a real problem and subject to even more wear and tear. The current plan is to wait until the next sign of trouble with the PICC line before scheduling the surgery for the broviac. We have our first appointment with the GI clinic on January 4th where I will bring up the subject so we can try to make a plan (never an easy thing to do with Josh). The surgery is relatively simple, but does require sedation and, therefore, another overnight stay. Joshua was completely at ease being back in the hospital, the little turd :) He was smiling and cooing at all the new nurses - just winning over more hearts! He is a real ham and is accustomed to being the center of attention. Many of our NICU nurses came to visit and that was a nice treat.
Now on to the other issue we have been dealing with for a few weeks - unexplained blood in Joshua's stool. The GI doctor had already suggested he have a colonoscopy and once Josh had a bad bloody stool in the ER, they decided to schedule it for the next morning. I walked Joshua to the operating room again which was an eerie feeling. The last time we waited in the same room was in October when we were devastated by his short gut diagnosis after his ostomy take down surgery. I knew in my head that the colonoscopy was a simple, low risk procedure. But it still made the hair on my arms stand on end to be in that room again and watch my baby be wheeled through the operating room doors. I waited in our room for Joshua to be brought back after the surgery. He returned in a few hours and in a very cranky mood (understandably). Josh had missed two feedings by that time since he wasn't allowed to eat before the surgery. Once they let me feed him he was my sweet, happy boy again. The colonoscopy showed irritation in the lining of Josh's rectum. A biopsy was taken and we are still waiting on the results. I think the holiday really slowed things down because we expected to know something days ago. The current thinking is Josh has developed a milk protein allergy which is very common in babies and especially common to short gut babies. The dairy I ingest is passing through my breast milk and is causing irritation in the mucosal lining of Josh's colon. This has not been confirmed by the histology report, however, the one GI doctor we saw is fairly certain dairy is the cause. A bacterial infection was essentially ruled out because Josh's stool samples came back negative for bacteria two weeks in a row and he has no other clinical symptoms of an infection. Josh was released on Saturday and we rapidly made our way out of the hospital and back home!
On Friday afternoon I reluctantly started on a non dairy diet. So far I am stumbling through it and trying to figure out what I can still eat that I enjoy. Removing milk, cheese, ice cream, and butter from my diet is a difficult pill to swallow. The even tougher blow is not being able to use all of the stored milk I have in the freezer. This is such a source of stress for me because I am not able to pump enough to keep up with Josh's needs on a daily basis so having the stored milk was a very reassuring resource. Every hour of every day I constantly think about milk supply. I live in 3 hour increments getting from one bottle to the next, patting my back that I had enough milk for that bottle and then immediately shifting to worrying about getting enough milk for the next. It is physically and mentally exhausting!
Joshua continues to flourish at home so all of the above is rendered inconsequential in the big scheme of things. He is growing rapidly, laughing and smiling all the time, and learning new things at a very quick pace. We are overjoyed by having him with us at home and knowing he has adapted and is enjoying his new environment is incredibly comforting. I will have to write about our Christmas in a separate post since this one is already pretty lengthy!
Pictures my sister-in-law, Anne, took that I have been saving until after Christmas gifts were opened:
Jaime told me about him being readmitted the other day after I got back from vacation. I hate I couldn't see y'all when y'all were here! Hope everything's better now and that yall won't have to be admitted again :(. Glad to hear he's adjusting well at home (not that I doubted he would). He's a happy boy and he'll be happy anywhere his mama is! -Stephanie
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