PICC line bacteria identified.

Over the next days, Little Man is doing really well, especially considering how rough things got to land us in the PICU. Everyone is pleased with how well his body is coping, maybe that is the advantage of a chronic illness- his body has developed many coping mechanisms and he is the healthiest sick kid we know! We were dismissed from the PICU after 24hrs. of being stable.


They have identified the bacteria, normal gut bacteria: pantoea agglomerans (previously known generally as enterobacter). This is a gut flora bacteria, belongs in the gut- not in the blood stream. It has set up home in one of the lumen’s of his PICC line. The antibiotics have eradicated it from his system, but it remains a threat in the line. Only further time, waiting for culture tests, will tell if we will be able to save the line (although looks optimistic that we will). We do cultures every day and as soon as those cultures do not grow any bacteria, they will be able to send us home on IV antibiotics.

The other complication is that his hemoglobin is dropping again, now down to 7 (normal is 11, we have to consider transfusion at 7 and if he gets any lower- we will be facing a transfusion). They haven't given him any IV iron this week yet but honestly the last 3-4 IV irons have not done ANYTHING to raise his hemoglobin....this still remains a mystery to me and seems there surely must be something else going on with how his body produces hemoglobin and how the reactions affect that.

Another kink is that the next day, he threw up this morning. Daddy (who takes the overnight shift) said he had a great night- slept through the night, and when waking up - before he had anything to eat, he threw up. Could be the antibiotics messing with his gut flora causing it; could be that he painted the day before (a dot marker type painting) and he painted his hands and then later licked his hand.....12hrs.later he threw up- classic for him (and has happened before); we had to just wait and see.

He never did have any further throwing up or tummy pain; so we concluded it was the paint.  Bizarre but FPIES.  He continues to do well, and we are dismissed from the hospital to continue IV antibiotics at home; having identified the bug and the antibiotic to treat it.   We are happy to go home.

PICU admission

Severe FPIES reactions resulting in sepsis like shock is experienced by ~20% of kids with FPIES. Little man has, thankfully, not experienced full shock as many other kids I know have. His reactions are much more the sepsis, and his body comes out of it. That is what I watched during his episode the night before- one minute he was slipping into shock and the next his body was turning it around. Except this sepsis wasn’t due to an FPIES protein trigger…
He had stabilized after the episode I was there for, and they finished his vancomyocin antibiotic; we then did a quick site care/dressing change (due once a week) and then I headed home- trading shifts with his daddy. The vanco takes ~1hr.so that finished up and they started the TPN. Within minutes monitors were going off, and he was decompensating quickly- this time worse than the previous one. I'm still fuzzy on the details (and maybe that is better) but they quickly transferred him to the ICU and got him stabilized. Little man’s daddy called me ~11:30pm to let me know he had been transferred and was now stable. They would be getting chest and abd.xray's to be sure nothing else isn't creeping in. He had a few more rough hours, he was stable from the shock episode but his monitors kept going off- he was in pain…from being full of stool! Gave us a little insight into how painful it is for him! They were able to give him a suppository that “took” within minutes and he was able to relax.

We stayed in the PICU for the rest of the day, with close monitoring- he continued to have blood pressure problems and a low grade fever throughout the day but by evening, he was dramatically improved.

Little Man has a double lumen PICC line- which means there are two lines that converge to the catheter that goes into his vein. One of the lines has always been "sticky", we suspect this line is where the infection set hold. Still unclear of how he got the infection but infections are the highest risk with PICC lines. We do feel we caught it early though; as early as we could have. The infectious disease doctors are optimistic that we will be able to preserve the line, that the organism that is infecting it is an easier to treat one and that the antibiotics we've been giving him are working.
Still not sure of the plan from here, but of course that remains on my mind- how long we'll have to wait for the food trials, how much the antibiotics are messing up his system, how long he will be on antibiotics, how long he will be in the hospital, if having an infection means we have to stay in the hospital or can we continue his TPN at home?

Fever out of no where?

I worked this weekend. I came home and made dinner. Nothing was out of the ordinary, Little man's daddy relayed that he had had a good day. After dinner, it was already late and we got the boys ready for bed; which includes hooking him up to his TPN. He was laying on the bed next to me, and I noticed some wheezing in his breathing. I thought maybe I was hearing things and decided to just listen quietly for more. His breathing remained a little erratic but he soon fell asleep. A few moments later, he was crying in his sleep and I reach over to him and can tell he is feverish. I call his daddy in to help me assess because something just isn't right. His daddy picks him up to comfort him more as he was waking up. They got into the kitchen and he started to vomit. First instinct was, what did he get today? But then went right back to the breathing and the fever and that although it was a lot of vomit- it was all his formula (fresh vs. the watery bile he would normally throw up with an FPIES reaction). We get him cleaned up and take his temperature, 101.7. I give him some of his compounded tylenol and we take him to watch a movie to settle him down. He goes right back to sleep and I call the home health nurse....still not sure what is really going on.

Little Man is rarely ever sick, besides his FPIES, but could this be a viral illness? Should we be calling his doctors? Taking him to th ER? The home health nurse confirms that the degree of his fever is concerning and that he is still shivering/shaking and burning up- she said to give him a few more minutes and check his fever again, if it was still elevated- to take him in to the ER. I checked and it was 103.7. I don't know what is going on, but I do know sepsis is a number one concern with a PICC line and I have no desire to wait around to see if he is going to get better or worse at home....I head to the ER.

Once at the ER, we are taken back immediately and the assessments begin immediately. His temp is down to 99, we assume the tylenol has kicked in and remain concerned over his symptoms due to his PICC line so blood tests are ordered and an IV is started right away as well as IV antibiotics (thankfully via his PICC). The risk of sepsis is high and there is no time to waste. The blood will need to be cultured to see if it grows any bacteria, but in the meantime, he will be treated for sepsis.

We are admitted for further observation while we wait for more tests. Little did we realize we are also admitted for further tests. We were up most of the night- getting blood draws (had to have one not from his line), they also got a urine sample (NOT fun!) to check for UTI as well. We finally got to sleep around 4am; and were up by 6:30am. In there he was also started on another antibiotic- they were doing two kinds to cover as many "bugs" as potentially could be an infection in his line. Unfortunately (of course), little man is one of a rare few that reacts to Vanco with something called "red man's syndrome". I swear he looked like an umpa loompa! He was getting so red and SO itchy. The RN promptly stopped the infusion of Vancomyocin and the redness quickly disappeared. We waited for IV benedryl to continue giving this antibiotic. He tolerated it better after that but still had some redness and itching.

The next morning, he was doing well and even though we didn't have answers yet, we were optimistic maybe we were "just" dealing with the GI bug. That afternoon he was getting some IV antibiotics so we watched a movie while he stayed hooked up (the IV vancomyocin was infusing for an hour every 6hrs.). Once that was done, we unhooked and went to play- he was running and playing for a little over an hour. Then he was ready to sit down and relax with a bottle.  I was finishing my dinner and I noticed he was started to look really tired, and sunken eyes. He leaned over and started moaning- as if he was achy. He then started shaking, the chills consuming his body. I called for the nurse so I could get her to take his temp before I gave him some ibuprofen- he was clearly uncomfortable.

Before the nurse could come in, the Resident was coming to tell me that the scope we had previously scheduled, had been postponed.  She quickly noticed his poor tone; falling asleep in my lap....she tried to get him to open his eyes and he couldn't even do that. We took a quick temp - he was clammy, his temp matched as low. Other nurses were coming in to help and getting blood pressures and oxygen saturation's, as well as heart rate and respiratory rates. He was all over the board. He is now having full body bright purple mottling, and his hands and feet are BLUE. His O2 was 84! The next temperature reading was 39degrees C, now he's burning up- from cold and clammy to burning up in 5minutes! I held him close and comforted him....I just wasn't sure how bad this was going to get. But that was it, his body started to relax a bit more, his breathing evened out better and his blood pressure stabilized. We were able to give him some ibuprofen and hook him back up to his IV fluids as well as antibiotics. The senior resident came in to confirm with this reaction and the cultures that were growing; we're dealing with sepsis.

Is this as bad as it will get? Will he have more of these episodes? He is fighting his way through this....

Hematology follow up

Little man has went through oral iron supplements- responded well too and then did not respond at all, and then actually seemed to have a reaction to (a new formulation Rx), hemoglobin levels dropped to 5 in October- blood transfusion necessary.  Hemoglobin rebounded to 10.5 following blood transfusions, wonderful!  Continued oral iron supplements, and a mere 1mo.later, hemoglobin back down to 6 (following a soy-challenge and discovery of villous atrophy).  Hematology consult, with recommendations for IV iron therapy for 10treatments (2x/week for 5 weeks).  That's a lot of IV sticks, PICC line placed instead and given parental nutrition along with iron therapy via the PICC line for 4 weeks, followed by 1 more week of IV iron.  

The last treatment was one week ago, a lab draw a few days later revealed a hemoglobin of 10.8!  His body responded well to the IV iron therapy and rebuilt his iron stores and red blood cells.   Anemia will always be a component of his diagnosis and he will receive IV iron periodically until we can get him past the curve on his tiny menu to some more iron-rich food sources (ie- MEAT!).   

With the news of the restored hemoglobin levels, we were finally able to remove the PICC.    Little man had the same PICC line for 38days, we kept it clean and intact and NO infections!  Whew! And it is now out - he got a treat last night, and then one just for the heck of it this morning- a full-soak-up-to-his-chest- BATH!  A no-soap bath, but still, playing in water, soaking bath is a treat.   We had given him a few baths over the course of the weeks, but with an arm wrapped in plastic, it was more of a chore than a relaxing activity.   Sponge baths were easier.  

We will do lab checks every 2 weeks for the next few months, as well as IV iron therapy once a month for the next 3 months.  We will not let any slippery slope land us back to a PICC line again.....we hope, and pray.  

Now, onto food trials....soon....