Monday Update

Lots of good news, lots of confusing news, and a bit of bad news.

The orthopedic doctors came by early this morning, and withdrew Will’s drainage tube halfway, and plan to remove it entirely tomorrow. The wound is draining nicely, and he seems to be less sensitive about his left leg, although he’s still not really using it. We only saw them for a few moments, so we still have a number of questions that we need to ask them, but they think he’s doing quite well.

As for the infection itself, Will is doing well, and has been removed from isolation, so there’s no danger of him infecting or being infected by other kids. We’ve talked at length with the infectious disease doctors this morning, and while they’re still a bit confused about why and how Will got this infection, they’re confident that the antibiotic he is on is the correct one. They’ve said that they don’t know how he got sick, or why he never really got a fever or looked ill, and that this germ is an unusual one to infect a two-month old. They’re going to want to see him again, and will talk with the immune systems doctors to see if any further tests on Will’s immune system are in order, but that they don’t see any specific reason for concern in that area.

The bad news – Will is probably going to need antibiotics intravenously after he’s discharged, which meas a PICC line:

PICC stands for: Peripherally Inserted Central venous Catheter. This intravenous catheter is inserted through the skin, into a vein in the arm, in the region above the elbow and below the shoulder. This is a peripheral insertion. The catheter is a long , thin tube that is advanced into the body in the veins until the internal tip of the catheter is in the superior vena cava, one of the central venous system veins that carries blood to the heart.

They’re thinking that we’ll need a home health-care service to help us with this, and that he’ll need doses every eight hours for four-to-six weeks. This, of course, leads to all kinds of questions:

  • Can Will go to day-care?
  • Will the day-care be comfortable caring for a kid with a PICC line?
  • Are we comfortable asking them to?
  • If he’s not going to day-care, will Pam or I stay home with him?
  • With either of our employers be OK with that?

I’ll post some more pictures in an moment. Will is awake and alert and feeling fine, so it’s a good time to do so.

Thanks again to everybody who’s called or written to share their love and support. It’s been invaluable, and very appreciated.

Aftermath

In ten words:

Will is doing well.  Mom is sleeping.  Visitors have left.

In 400 words:

The surgery went flawlessly.  The fluid in his left hip joint was definitely infected with an E. Coli type bacteria, the same one that had cultured in his bloodstream and set us on this course in the first place.  The doctors are very confident that they removed all of the infected fluid, and that there was no damage done either bone or cartilage in the joint itself.  For the first time since we went to the Emergency Room on Thursday morning, the doctors found exactly what they thought they were going to find, and treated it exactly how they had planned on treating it.  It’s a huge relief to finally get to the point where they aren’t saying, “Well, we thought it was this, but it’s actually much worse…”

Will woke comfortably after the anesthesia wore off, and drank some Pedialyte without nausea.  Since then, he’s been back on formula, and is off IV fluids.  He still has IV ports on both his scalp and right ankle which are used to administer a robust battery of antibiotics, and that will continue as long as he’s here in the hospital.

On the inside of his left hip, he has a small (one inch-ish) incision that was used to drain and flush the infected joint, and a drainage tube which is still protruding from it.  The wound is covered with a thick layer of gauze, and taped up to protect from pee and poop.  The wound is draining nicely, a pinkish fluid rather than a yellow one, which would indicate further infection.  The tube will be removed halfway tomorrow, and completely on Tuesday, which would be the earliest he would be discharged.  He’s still not using his left leg much, although the doctors said he moved it around immediately after the surgery, and at the moment it’s mostly taped up to hold the gauze.  His appetite has returned, and although he’s still constipated, that’s a small concern given everything else that’s happened.  He’s exhausted, and hoarse from the breathing tube used during the surgery, and has slept most of the day.

We’ve had a steady stream of visitors today, and lots of prayers and well-wishes and concern from everyone we know.  It’s meant a lot to us to hear from so many of you, and we’re sorry we haven’t been able to call everybody.  Right now, we just all need some rest, and to know that the worst is over.

Surgery and Recovery

Will is now out of surgery, and doing just fine. (WHEW!)

The surgeons opened his hip and found a lot of fluid (which looked “angry,” in their terms). They drained it, and saved some for re-culturing, at the request of the infectious disease doctors. They’ve determined it was some kind of E. Coli which probably migrated to his bloodstream from his digestive tract, and then from his bloodstream into the hip socket. We’re very lucky we caught it when we did.

Will is recovering, trying to keep some pedialyte down, and then we can get him back onto formula. More updates later.

Thanks for all the support, everyone. We’re going to be here at the hospital until at least Tuesday, probably more like Wednesday.

Surgery Definite

Will’s hip flushing surgery is definitely scheduled for 8:45 AM.  His blood tests continued to culture the same bacteria overnight, despite the aspiration and antibiotics, so the surgeons feel that opening up the socket and removing all the infection via surgery is the safest option.

Surgery should last about an hour.

Will is very hungry, as he hasn’t eaten since midnight.  He slept pretty well all night, but we held him from about 3 AM onwards.  Keep your fingers crossed.

Late Saturday Follow-Up

The fluid drawn from Will’s hip was tested to see if it was infected with the same type of bacteria they found in his blood last night.  Before getting to the results of that test, I need to tell you a little about that type of bacteria.

The pathogen that cultured in Will’s blood last night is a new one to this hospital, although they’re familiar with the general group of bacteria to which this one belongs.  They’ve told us that when they see kids with this type of bacteria in their blood, the kids are usually very, very sick – in intensive care, on blood-pressure drugs, and getting worse quickly.  Will, however, is doing pretty well other than his hip pain.  He’s got a low-grade fever, depressed appetite and some fussiness, but nothing like they expect to see from a kid with this type of bug.  We either caught it very, very early or Will is a tough little guy, or both.

Also, they have no idea how he might have caught this thing, nor do they know where in the body it may have started.  They do know that it’s in his blood, and – yes – in the fluid in his hip socket.

After the fluid test came back positive for infection, they immediately began preparing us for surgery.  The procedure they planned would open up a small incision in his hip socket, insert a tube, and flush the socket with saline, repeatedly and completely, to remove all traces of the infected fluid.   They started him on a dose of IV antibiotics, and waited for him to wake up a bit from the previous sedative, which was taking several hours.  Unfortunately, as they sheepishly admitted after waiting about 90 minutes, they had overdosed Will on his anesthetic and his antibiotics.  They had dosed him based on a weight of 11.2 kilograms, instead of 11 pounds, 2 ounces, so they gave him roughly twice as much as needed.  Luckily – very luckily – they needed almost that much to completely sedate him, so there was no harm other than a longer awakening and recovery from the fluid extraction.

As we waited for Little Willpower to awaken, we shed some tears – it’s hard to see him with oxygen tubes in his nose and IVs and monitors.  Grandpa Bill and Grandma Lois and Aunt Susan and Great-Grandma Jean came to visit.  And we waited, and waited, and waited.

The surgeons eventually stopped by at about 5 PM, and told us that they weren’t going to be able to do the surgery this evening until at least 10 or 11 PM, so they wanted to wait until morning.  Given that Will was already doing so well in fighting this otherwise-powerful bacteria, and given that they withdrew so much fluid from his hip via aspiration, they wanted to wait, evaluate him overnight, continue to hammer him with antibiotics, and schedule the surgery for first thing Sunday morning.  It’s a possibility that, when they check him in the morning, if he’s still doing so well and his blood tests indicate that the antibiotics are beating the bacteria, that surgery may not be necessary.  In addition, due to the strangeness of the bacteria and Will’s unexplained resistance to it, they want the infectious diseases people to examine him tomorrow as well.

So they’ve moved us up the second floor at Cardinal Glennon, and Pam is snoring on the pull-out couch, and I’m looking at him trying to figure out how we started this process concerned about constipation and ended up admitted to the Hospital with a hip surgery scheduled for tomorrow morning.   Will is sleeping peacefully and comfortably, having just gobbled five ounces (his appetite seems fine tonight).  We can’t feed him after midnight, so we’re in for a long night of hunger fussiness, in addition to the anxiety.

We know that there are so many of you out there praying for our little guy.  Thank you, and we’re sorry we haven’t been able to call each of you with every update.  Keep checking here, as we’re going to be in the hospital until at least Monday even without surgery, and I’m going to try to keep posting updates as we learn them.  There’s a new album of just pictures from this (mis-)adventure here, and I’ll keep adding photos from my phone as I can snap them.

Three Days, Three Trips to the ER

After another mostly sleepless night, Cardinal Glennon called us this morning, saying that Will’s blood had cultured a certain bacteria overnight, and that they really wanted us to bring him back to the Emergency Room.

So we’re back, and they’ve popped another IV into his scalp to draw more blood, but also to sedate him so they can draw fluid directly from the hip joint for further testing.  At this point, their concern is that the bacteria they found in his blood will (or may already have) migrated into his hip socket fluid, causing an infection that could damage the joint.  They just hooked him up to all sorts of monitors, and have him under an X-ray table that they’ll use to guide them during the extraction, which should take just a few moments.  The scariest thing is, of course, the risks associated with anesthetizing an eight-week-old baby.

The doctors are working on him now.  Best case scenario is that they’ll admit him and administer IV antibiotics all night.  Worst case scenario is that they’ll have to do surgery on his hip to clear out the infection.  There are lots of possibilities in between.  Every one of them is frightening to us.

You can find more pictures here.

More later.

Black Friday

We started this morning hoping to get a call that Cardinal Glennon Children’s Hospital in St. Louis would be able to find a slot for us to get an ultrasound of Will’s left hip, to check his hip dysplasia. After a flurry of phone calls between Dr. Tripathy (Will’s pediatrician at home), Health Alliance (our HMO) and the scheduling office at Cardinal Glennon, we got an appointment for 11 AM.

The Ultrasound nurse and Doctor at the Hospital were fantastic. They examined both hips very thoroughly, and quickly eliminated any possibility of hip dysplasia – his hip sockets were of a very normal depth, and, in the nurse’s words, “gorgeous.” But, ominously, they found some fluid collected in his left hip socket, which was probably causing the pain. They were very concerned that the fluid was infected, with two possibilities being Septic Hip and Hip Synovitis.

Transient synovitis causes inflammation and pain around the hip joint. The symptoms tend to begin quickly over 1 to 3 days, and usually resolve over the next several days. The following symptoms are common in children with transient synovitis of the hip:

  • Pain with movement of the hip
  • Hip and knee pain
  • Difficulty walking or a limp
  • Holding the hip flexed and rotated
  • Fever

The concerning aspect is that these symptoms are very similar to a septic, or infected, hip joint. Bacterial infections of the hip joint are more serious, and may require surgery to treat the infection. Therefore, any child with hip pain or a limp must be carefully assessed by a doctor to determine the cause of their symptoms.

There were other less serious diagnoses, but with both of these more serious possibilities, we worried that if we hadn’t caught it early enough, it would cause the bone of the hip and socket to degenerate.

The Ultrasound nurse walked us immediately over to Cardinal Glennon’s Emergency Room, where another pediatrician and the managing doctor of the ER both checked Will’s legs and hips, moving them around and generally causing a significant amount of pain, although much less pain than was evident yesterday. They began to draw blood (with much difficulty and pain and tears from all of us) to test for infections, and if infections were indicated, the next likely steps were to drain fluid from the socket (via a very painful direct injection) or even surgery to remove infected cartilage before it could permanently damage the bones. They tapped veins in both of his arms, but couldn’t get a good IV started, so they ended up setting up the IV port on his scalp, as you can see here.

Needless to say, after beginning the morning hoping for a preliminary test for the relatively harmless diagnosis of hip dysplasia, suddenly things were looking much more serious. They talked of admitted Will to the Hospital, and draining the fluid, and even surgery.

After a few hours of stress, the blood tests came back, and a pair of orthopedic pediatricians came in to discuss options. They were both very direct and very clear – the tests indicated little chance of infection, and the doctors weren’t as worried about the more serious possibilities. With the noted improvement in his leg’s motion and discomfort since Thursday, there was little need to check for infection by drawing out the fluid via needle extraction and testing it directly. They discussed admitting Will for observation, but they decided that since we looked like reasonably responsible parents, we could take him home, stay in the area overnight, and keep a close eye for any spike in temperature or swelling/redness in the area which would indicate an infection. Their advice was that if things were going to get worse, they would do so very quickly, but if they were to improve, they would do so more slowly. We can head back to the Hospital any time if we notice any worsening problems, or we can follow up in a week or so with the orthopedic pediatrician if he keeps improving.

So, now we’re at Grandma and Grandpa Adomite’s, all trying to snuggle with him as much as possible. He’s completely exhausted from two day in the Emergency Room and four days of screaming and discomfort. He’s waking briefly to eat a bit before passing out, and that’s about it. We’ll keep taking his temperature, and monitoring his fussiness, and hoping that his leg keeps improving.

Thanksgiving (and the Emergency Room!)

Happy Thanksgiving!

We’ve had quite a day so far.  We’ve been having some constipation problems with Will, as you probably know if you’re reading this.  This week has been especially tough for him, and starting on about Tuesday, we’d noticed that he was pulling his left leg up to his chest.  We guessed that it was related to his constipation, and the Patient Advisory Nurse (with whom we’re now on a first-name basis) told us to give him a suppository, which worked immediately (if painfully) on Wednesday morning.

Wednesday night, we headed to Troy for Thanksgiving, and his leg was still clenched up by his chest, so we thought he was still plugged up.  He wailed every time we messed with that leg, but we thought we’d just keep an eye on it.

Thursday morning, still no bowel movement, and the leg was still clenched, and he was clearly in discomfort, so we called the Patient Advisory Nurse again, to share our worries about his leg.  She advised a trip to the Emergency Room, so at 10:00 on Thanksgiving morning, we went to Oliver C. Anderson hospital.

They X-rayed his belly, to see about his pooping problem.  And they X-rayed his legs and hip just to make sure nothing else was wrong.  Finally, at 2:00, we got a see a pediatrician who was actually visiting  at Anderson from Cardinal Glennon Children’s Hospital in St. Louis.  He looked at the X-rays and decided that Will had a dislocated hip/leg, and he spent a few minutes working on Will’s legs.  After much screaming and tears (from all of us), Dr. Lackey thought that he had popped the leg back into place.  They did another round of X-rays, confirming that the leg was more correctly seated.  And Will was clearly much more comfortable, which reassured Pam and I.

Dr. Lackey diagnosed Will with Hip Dysplasia, which means that his hip sockets are a bit shallow and he’s going to be more prone to these sort of dislocations.  With a bit of therapy and double-diapering, his leg will probably grow properly seated into the socket, and there should be no long-term problems.   But we’re doing a follow-up ultra-sound at Cardinal Glennon in St. Louis tomorrow, and we’ll have to have him seen by a orthopedic pediatrician, also at Glennon.

Long story short:  he had a dislocated leg/hip, which is now fixed, and hip dysplasia, for which we still need to see the doctor.  And he is feeling much, much better than he has for the past few days, which is awesome.

And now we can finally eat.

Happy Thanksgiving!

Will is 7wks today!

Wow, at some point in the real near future we are going to be referring to how old he is by months and not weeks. I was just reading my weekly update on 7 Weeks and it talks about babies having more alert time and also extending their arms, hands and fingers a lot more. All of this is really happening with Will. He has a good 1 1/2 hour alert time every morning around 6:30am. He is so alert and looking around at everything.

Will is busy taking his regular morning nap. The time varies, but he is usually down for at least 2 hours. During the day while I have been home, I have placed him on his belly to take a nap. He sleeps like a champ in this position and he can move his head from one side to the other. He is really gaining significant head and neck strength.

We can’t not talk about the poop issue as anyone who know us and our circle of friends knows that “it all comes back to poop.” So I checked in with the nurse yesterday because Will is only pooping every few days and when he does I am amazed that he can pass something soooo big out of him. Constipation – yes! He has to get this from his mommy. Sorry Will. So the nurse is recommending we do 1 oz of apple juice straight up for a few days and then see how things are moving along and back off to just a few times a week then. So yesterday we started the apple juice and by last night he had a diaper full. I will spare you all the details of what I investigated in his diaper, but we are progressing!