Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...
Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.
And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.
"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."
Sunday, October 23, 2011
Last Sunday, we went to the pumpkin patch, Little man was having a rough sort of day- he enjoyed playing but was tiring easily. We suspected it was from not getting his TPN the night before. Big mommy and daddy mistake, part of being in the hospital for a week- no milk in the fridge for the other boys’ breakfast; and no tubing for his TPN administration. We hadn’t realized we were short! We had the TPN bags, but the wrong tubing was sent! It was a weekend, we didn’t expect that anyone would be able to get us the tubing we needed until Monday, so we upped his formula intake (of course) but we were unsure how that was going to work out for him.
By Monday morning, it was becoming more clear that something wasn’t working out for him- but now we had a few things in the differential. A water bottle on Friday, found to have “gunk” in the sip valve; missed TPN for 2 nights, a line that wouldn’t flush the antibiotics through and we had to “push” it through (potentially putting bacteria into his system- not enough for full sepsis but…), or was worse yet- was he reacting to something like his new brand of hemp protein powder. Ah, the fun times of FPIES guessing games. A delayed food allergy, you have to look at a minimum of a 24hr.window. It gets muddy sometimes!
He had labs drawn on Monday, and my concerns grew as his labs confirmed that something wasn’t right. I continued to watch him through the next day- I was concerned that he may be heading downhill. I contacted his doctors and decided to continue to watch him through the day, and get his Thursday labs done on Wednesday to help assess- and make a plan if needed.
Thankfully, by Wednesday he was showing improvements and his labs confirmed this. We still don’t know for sure what caused this, but just thankful it was short-lived and his body re-cooped quickly. Thursday and Friday, he began to be more and more himself. He is still getting IV antibiotics 2x/day (morning and night). This will continue until the 26th; and then we will get cultures to see if the long treatment of intense antibiotics has worked to rid his blood of the bacteria. Good signs are that he is looking good, acting well, and his line that had redness around it now does not. I pray this treatment has worked.
One other thing noticed in his lab work is that his hemoglobin, that was dropping last week, has started to climb up….for the first time on its own- the numbers are going UP! I’m puzzled by this, an am remembering some research I have done on “iron loving bacteria” and wondering if that was happening to him. Well, now he is on IV antibiotics and his hemoglobin is going up- on its own. Coincidental? Maybe. Maybe it is a silver lining amongst this sepsis cloud. Everything does happen for a reason, that I do know.
The next step is to start some probiotics. Antibiotics kill bacteria in the body- good and bad. It may be helpful if it is killing some negative bacteria that is iron-loving; but regardless, his body still needs the good bacteria. Probiotics are found to be helpful during antibiotic treatments. Maybe this is the time when we get ahead of his gut dysbiosis that we know has compromised his gut health and complicated his FPIES?
Saturday, October 15, 2011
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.
Wednesday, October 12, 2011
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?
Monday, October 10, 2011
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....
Sunday, October 9, 2011
Little Man had never had zucchini, he has had carrots here and there, and he's had potato- before we took away food at 7mo., and recently I let him have a few bites of a baked potato.
Little Man is a delayed reactor. He falls into a category of chronic FPIES, where he does not have an acute reaction with first exposures of the food. Why - we don't know. But we do know it takes multiple exposures to a food for us to see measurable symptoms; and with how badly we want a food to pass- we have even gone too far with symptoms- although the doctors would not always agree. But that is what this hospitalization is about- to match the lab and vitals to the other symptoms we see when his body is not accepting a food; and hopefully learn form the corresponding symptoms to better guide future trials, at home.
11days ago, I let him have a few bites of some fresh, organically grown, boiled skinned, seeded zucchini. They were boiling in the pot and he called them a cookie and asked very sweetly for them. We had zero symptoms of concern for the next 18hrs or so. And then he had a liquidy diaper- ones we see when we know he is reacting. That same day, I had also started a new hemp protein powder- since the one he has been on for a year has been delayed in production, we needed to find a replacement. This one has plant extracts of sage and oregano- something he could potentially react to as well.
The diapers continued for 8 more day. Then, they finally stopped. The weird thing was that they weren't frequent- only once a day and for a few days, he wasn't even having one a day. And he didn't have too many other symptoms that would be terribly concerning- nothing building. So, my worry of it being the protein powder that he was still getting lessened and my concern that it was in fact the zucchini is growing. There is ONE other potential cause and that is a board book he sucked on on Saturday morning (2days after the zucchini). He's had full vomit reactions to board books before- I remember specifically because there were pieces of a board book in his vomit one time. But he didn't vomit, he had diarrhea for 8days....
The food trial next Monday will fill in the rest of this story...I hate that we have to, likely, make him sick but I don't know what else we can do at this point. We've tried everything else over the past year; and he not only needs a more varied diet, we need to know why this is getting worse for him instead of outgrowing. As with everything else, time will tell. And our Faith will guide us
Saturday, October 8, 2011
We've been enjoying the fall, enjoying the other boys, getting household projects done, and just getting things ready for the hospital admission (still scheduled for Oct.17). He has a scope scheduled for Tuesday, it is the first time in a long time we won't have our GI and I'm a big nervous about it; but it is the other respected GI and he needs to have it done in a long enough time before his food trial so the effects can wear off before the trail.
Coming out of "survival" mode can be an adjustment though, with Little man's FPIES being chronic- we are never sure what the day will bring, sometimes not what the next moment will bring. We have had to build some truly strong coping skills. Although sometimes, I'm still faced with new situations and not sure which way to cope. I am reminded of my Blessings and I continue to put my trust in my Faith.