A chronicle of our trials and triumphs as we battle Hyper-IgE syndrome (Job's disease) with our baby boy Sam.
In reflecting on Sam's first year this weekend, Esther and I both felt like we had aged 3 years in the last year alone. I think I have a gray hair for each of the last 365 days. Not that I'm complaining... Truthfully, though, we are grateful beyond words to be celebrating Sam's first birthday. He is such a joy to be around, and he truly adds a dynamic to our family that we can't imagine living without. Though we have no idea what even the next year will bring, we are braced and ready to go. Dr. Belani (infectious diseases doc) ran into Dr. Steven Holland (world expert on Hyper-IgE) at a conference this fall and he asked about Sam. He is looking forward to meeting our family next summer, as we plan to drive out to Maryland for some tests and to hopefully put together a care plan for Sam. Sam is one of the youngest confirmed-positive cases of Job's syndrome, so they are anxious to confirm if the case is sporadic or if it is carried recessively in our families somewhere.
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It's hard to believe it's been just 4 months since we last left the hospital. It feels like such a long time. Sam has been doing remarkably well lately - not without some complications, but nothing like what we expected. We are down to just taking Bactrim twice daily and Pulmicort once daily. We still keep him fairly isolated (especially with school in session), but he's really starting to get around and even starting to walk! The diagnosis of Hyper-IgE was also confirmed since our last post - Sam's blood was sent to Bethesda (NIH) for Dr. Holland to run tests for the genetic defect that causes Hyper-IgE. Indeed, he has the defect - this really only corroborates the diagnosis, as he is so symptomatic even a negative test would only have shown there is some other possible cause they have not yet discovered. They will eventually want to run more tests on Sam as the years roll on. Probably the biggest single issue of late is the eosiniphilic dermatitis breakout on his head. It's very itchy and the only non-corticosteroid treatment for it is a cream that we have to use very sparingly. He itches so vigorously at times (especially in his sleep), that he bleeds and creates open sores. He's also been growing some ulcers in his mouth that have made it hard for him to eat comfortably. On the whole, he's been quite healthy. We are cautiously optimistic for the fall and early winter...
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I apologize for not updating sooner - as most of you know, no news is usually good news.
The good news is, we've been home for almost a week now. Sam appears to be doing well, but there are downsides.
We came home with a feeding tube installed, and it's been a real battle to keep it down and taped, especially with an increasingly active boy. Needless to say we are becoming intimately familiar with the best and worst ways to tape, glue and wrap feeding tubes. He is eating about 2/3 of the calories he needs during the day on his own, and we use the feeding tube at night to supplement, and for easy (relative) administration of medication.
Seems as though each trip to the hospital introduces new precautions, medications and processes that need to be administered. It's getting increasingly more complicated to keep sammy healthy.
Having said that, there is no price too great to have the family together. We are just hoping we can get into a rhythm and routine, perhaps generating some free time for luxuries like lunch, personal hygiene, date night, laundry and...sleep?
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Some more ups and downs today. Everything we are doing is focused on getting Sam to eat. He has a tray full of dozens of different types of bottles, nipples, straws, and sippy cups - all potential delivery vehicles for the food he won't eat. They even tested his CRP and renal function today, changed his antibiotic to try and get his appetite started up. He had another feeding tube put in this evening, we just couldn't wait any longer. He's been eating a little better, but when you're measuring what he eats in milliliters rather than ounces, just to make it sound like a lot of food, you have a problem. On the bright side, he did actually take about three ounces tonight, over the course of a couple hours. The best news is, he took it from his bottle. The tried and true bottle he's been using for months! So, there is hope he'll re-acquaint with the bottle and eat. We are fine with it either way, we just want to get our baby back home.
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 Dr. Shapiro is very confident in the HIES syndrome diagnosis, with or without a STAT3 gene defect. He said this is a classic presentation and symptomatically a perfect match. He expects Sam's IgE to spike at around 20,000 by 18 months to 2 years. He wants us to try as hard as possible to do normal things with Sam. Anything outdoors is fine, and just wants us to avoid crowded and potentially germ-infested, poorly-ventilated indoor areas. He does not think that strict in-room isolation is necessary, but we should control carefully who comes into the house. Shapiro feels confident that Sam will have much longer periods infection-free once he's on prophylactic antibiotics, but cautioned us that every case is different. Sam could present with all the symptoms of HIES, or just a few. Time will tell. We will just have to be much more aggressive when he is symptomatic. Now that we have everyone's attention, that shouldn't be hard to do. For more information on HIES, you can read this: http://www.primaryimmune.org/pubs/book_pats/e_ch12.pdf
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It's a beautiful day here in Minneapolis. We spent the morning enjoying the view of blue skies out the 7 th floor window, trying a thousand different ways to get Sam to eat. Dr. Shapiro ordered his feeding tube shut off so he would be hungry, and his IV was turned down to TKO (just enough flow to keep the vein open) to make him thirsty. No sooner was I on the phone to Esther explaining the turning down of feedings than Sam snagged the 1/16th of an inch of tube that was not taped down and ripped it out of his stomach. I didn't know how long it was, but knew I had more line in my hand than was in his nose. By the time the nurses arrived, the tube was completely out. Sam and I were both sprayed in some unpleasant combination of bile, prevacid and elecare. Guess we won't be needing that anymore... Our neighbor Danielle (who happens to be a speech therapist) had offered to sit with Sam for a while so the other kids could enjoy some mom & dad time. We took her up on the offer, so while we went for a walk around lake Calhoun and ate sloppy ice cream cones, Danielle got Sam to take 1.5 ounces of Elecare! May not sound like a lot, but it really helped us help him get back on the horse, so to speak. He ate another 2.5 ounces before bed (via a straw), so we're making some progress.
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 Esther had a couple interesting conversations with the doctors today. Dr. Pryor (Pulmonology) warned us that Staph pneumonias can be tricky (especially for an immune-compromised patient) and can really wax and wane as they die off. He told us to be prepared for good days and bad days. They will be taking another x-ray Friday to ensure his Pneumatoceles are not abscessing. If we end up on a longer IV antibiotic regimen to kick this infection we may get it to go, having a PICC line to take home.
Dr. Shapiro from immunology also reinforced our go-forward protocol for dealing with Sam’s warning signs. Fevers win us a free pass to the Dr. for an x-ray. Same with 3 days of sniffles. Each and every symptom will be scrutinized more closely by the doctors, especially immunology. Esther told Dr. Shapiro he’s welcome to make house calls, but in lieu of that I think we’ll just take the VIP pass to Midwest Immunology. Maybe they’ll rent us out a broom closet.
In reality though, we’re hopeful that whatever antibiotic cocktail they cook up for us long-term, it will help him stay healthy for longer than 2 weeks at a time. It won’t be long before he wants to start being a kid, and we need to do what we can to make that possible.
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The Pulmonologist on call today informed us that because of the Pneumatoceles (holes) in Sam's lungs and the risk of associated infection, he needs 14 days on the IV antibiotics, rather than 10. It's a bit of a setback, but we'll just do the best we can. Obviously we'd rather be home together, but we also don't want to bring him home prematurely if he's not on track for a full recovery. We were also told that his NJ tube is not in his upper intestine, it's just coiled up in his stomach. The reason we were okay with the NJ tube is because it bypasses the stomach, ensuring he does still get hungry so we can continue to work on his recent feeding aversion. We'll be talking with the doctor about that tomorrow.
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Our original thought was that it would take weeks to get on the schedule to have Sam's blood tested in Maryland, but when they found out that Sam's in the hospital, they found an opening for tomorrow! The lab techs drew 8mL this afternoon and it is now en route to the NIAID lab in Bethesda. It will still take 2-6 weeks to get results, but at least we don't have to wait to get things started. Since Hyper-IgE is where most of the medical team is leaning, it's important to get this result so we can confirm or keep looking. We are still a little anxious about his Pneumatoceles. We are hopeful that tomorrow's x-ray will at least not show the holes getting larger or abscessed. More tomorrow...
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We just found out that Dr. Steven Holland in Bethesda, MD will take a sample of Sam's blood and test it for the STAT3 mutation that causes Hyper- IgE Syndrome. This is great news as it will possibly give us a definitive answer on whether it's the underlying source of these infections. We still need to work out the details, but it's very positive news. Sam's pulmonologist today also warned us that the Pneumatoceles (small holes or cysts) in Sam's lungs appear to be maturing on the latest x-ray. They'll be watching it carefully over the next 24 hours to see if they respond to treatment and Sam's natural (albeit weak) ability to fight off infection. If they start to abscess, further action will be needed. We are hopeful, but certainly not out of the woods yet...
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Today was a very eventful day. Sam has really struggled with eating, particularly from a bottle. So, even though he has been eating some rice cereal from a spoon for the past 24 hours, it's too little too late. It's been 5 days since he's eaten anything substantial and a feeding tube ( nasojejunal or NJ) was ordered today. Not a fun procedure, but we all agreed he needs the nutrition. This tube bypasses the stomach, so at least we'll still be able to feed him as he regains his appetite. Hopefully this setback will not adversely impact the duration of our stay. He has 7 more days of the IV antibiotic, and a lot can change in 7 days. We were moved from the 6 th floor up to the 7 th floor today. We feel good about this move, as so many of the nurses on 7 are familiar with Sam and we are familiar with them. It's been a hard day filled with hard realities. We miss the kids, we miss each other and would love to see Sam make consistent forward progress. We can't hang our hat on any particular diagnosis or theory yet. We are hopeful and prayerful that Dr. Holland in Bethesda, MD will accept Sam in the STAT3 study. This study would confirm or rule out Hyper- IgE syndrome. There are many other theories swimming around for which he's being tested, this one happens to be the most difficult to do and perhaps one of the more likely culprits. In a lot of ways this has already seemed like our longest hospital stay yet. A lot of the choices we've had to make as a result of the timing of this round have made it particularly painful. We are grateful for the support of our friends and family. It's easy to feel isolated in situations like this, and the calls and visits are greatly appreciated.
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Well, Sam has not eaten any food since Wednesday. He's getting the fluid he needs, but he's losing weight. The doctors are saying he'll eat when he's ready. You can tell from his cry that his throat is still sore and he's not feeling very well yet. He is still on oxygen through a nasal cannula. His oxygen saturation stays high when O2 is removed, but his respirations/min go up as well. His body has learned to adjust oxygen levels by increasing his breathing rate. He was moved from Vancomycin to Oxacillin today. The Oxacillin is more targeted to Staphylococcus Aureus, whereas the Vancomycin is more broad spectrum, often used as a "drug of last resort" for methicillin-resistant strains of staph. He seems to be in pretty good spirits today, with plenty of smiling and talking. If we could only get him to eat something...
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Sam has still been fairly lethargic today. He doesn't always appear stressed when he's sick, but he does now. Just this evening he started cheering up a bit. This boy is definitely enamored of his mom - I think in some small way he knows of her importance in his life and treatment. He's a very lucky little boy. The doctors have some new theories, some old theories, plenty of strange and exotic tests to run, but no diagnosis yet. We won't prognosticate any further until we have something solid. We have resigned ourselves to the fact that this is our new life, so any diagnosis will be good news in the sense that it gives us a direction; a course for treatment, even if not a course for cure. The other kids are having a blast in Hartford with the Roemers, only occasionally waxing homesick. the family distance is hard on all of us.
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The cultures taken from yesterday's bronch grew staph bacteria. Once again, a common bacteria is causing a very uncommon and severe reaction in Sam. The good news is we're getting a lot of attention from our team of doctors. Being in the hospital really gives Sam's condition due weight. They are drawing blood multiple times daily to run a bevy of tests and studies. The bad news is that this pneumonia requires a 10-day antibiotic course that can only be administered intravenously. We are earnestly praying that his bacteria will respond to the antibiotic. The earliest we'd be discharged is next Sunday the 15th. It's a tough sentence, but we feel up to the task. The kids are staying with Esther's sister's family for the next week or so to allow us to focus on caring for Sam, re-sterilizing his living quarters, and work. The next few days will be particularly difficult while Sam recovers from the bronch, fights off an infection, and gets back to eating food. We appreciate more than we can express your prayers and support...
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Another bronch was ordered for this afternoon. Sam was anesthetized for it again. Due to his history of rare and serious pneumonias, it's no longer safe to assume that a simple 5-day penicillin variant will knock it out. True to form for our medically complex conundrum, this one is serious. It's not pneumocystis, but the biopsy revealed a large ball of pus in his lower right lobe. It was successfully extracted, and Sam is recovering nicely. He is currently on 3 antibiotics to treat all of the possible infections. Once the culture grows, we'll be able to narrow it down. Once again our frustration is getting caught up in the short game. The real issue is not the pneumonia, it's what's causing it over and over and over. The silver lining to being in the hospital again is that this brings the issue to the forefront of the doctors' minds. We need the brain trust to invest some time into getting us a diagnosis and long-term treatment plan. We need the fence on the cliff, not the ambulance in the valley.
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Dr. Paulson wanted to see Sam first thing this morning. Not a moment too soon really. Last night was rough, complete with some very labored breathing, vomiting and refusal to eat. Even with our toy stethoscope we were able to hear the rustling in his right lung. We knew what was coming. The morning x-ray revealed a large occluded patch in his right lower lobe. Paulson conferred with Wheeler and they want us in the ER this morning. Accepting that this is our new reality goes a long way in dealing with these setbacks. We are emotionally doing quite well. Exhausted but stable... Sent via BlackBerry by AT&T
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Just 10 days after completing treatment for a less serious pneumonia, things really started spiraling downward over the last 72 hours. We saw Sam's pediatrician Dr. Paulson late last week and his lungs sounded good. The bloodwork, however, told a different story. While his eosiniphils were down (that's good) but his overall WBC was way up, indicating a problem. His breathing really became labored and we went back to our 24-hour pulse-ox/hydration watch.
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We have been able to successfully treat Sam's third round of pneumonia at home. It's fairly safe to say we are through the worst of it. Our round-the-clock hydration and respiratory watch paid off and we only had a couple close calls. He'll continue his antibiotic regimen until next Friday, with a pulmonary follow-up this Thursday. He is also just days away from being completely off his steroid treatment, at which point our immunologist will be able to begin some tests to determine what kind of underlying immune deficieny is afflicting Sam. We are hoping to have a diagnosis soon so we can begin some kind of long-term treatment.
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Yep, we cursed it. Things were going pretty well. Some light sniffles last week gave way to some severe nasal and post-nasal congestion which has put a big damper on Sam's ability to eat. Caloric intake is dropping below where it needs to be. Even more concerning is his inability to shake the sniffles. Twice now it's escalated and his sniffles have turned into pneumonia. Took him in for an x-ray yesterday and he is cloudy again. Back on Bactrim to try and clear the pneumonia at home. As long as he can breathe, we're trying to keep him stable at home, avoiding the hospital at all cost. We've also discovered a strange sore on his leg that the immunologist is going to weigh in on, hopefully today.
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The relative calm of the last four weeks has been a welcome relief. Our lives have certainly not been the same with Sam in isolation - but in comparison to the weeks spent in the hospital, it's a cake walk. Sam has been taking his Elecare formula very well, and is bulking up quite a bit. We are just 2 weeks away from being off of steroids which will be the gateway to possibly having a diagnosis. We are cautiously optimistic of some smooth sailing for a few months.
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Apologies for the delay in posting - it's been a whirlwind for the last two days trying to get everything ready for Sam. He is now comfortably resting in his own crib. Even though it seems we're at the beginning of this medical maze rather than at the end, it's great to be home together again. I'll continue to update the blog as we attempt to learn more of Sam's condition and how it will impact him and us going forward. Once again, the silver lining in this ordeal has been our friends and family who have sacrificed much to help us get through. We are humbled by your love and compassion.
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Well, it's been a good couple of days. Sam is taking well to the new antibiotic, and is not fighting the oral prednisone (steroid) too much. He actually had a solid stool today (which doesn't sound like a big deal) but after 6 weeks of diarrhea, that's a big deal. Plus, his blood work from today is the best he's had in 4 days. We are fairly certain we'll be discharged tomorrow, and we are doing all we can to have his room ready. Without a real diagnosis, we are being very cautious with his home treatment. Here is what we know: 1. This is more than just a milk allergy. He has some mild to moderate immune deficiency. 2. His eosiniphil count is very jumpy. When those get too high, his immune system is compromised. The steroids help keep the eosiniphil count down. 3. His neutrophil count is very jumpy. You need neutrophils to fight infections when they first start. 4. He still has a very dangerous form of pneumonia that requires 3 weeks of treatment. After that, there's not a lot we do know. We are going to do our best to protect him from school germs and other general nasties until we have more answers. His only outings for the next 6-8 weeks will be to the immunology clinic. Stating that is just as much for mom and dad as it is for the reader. It's been difficult coming to grips with the long-term nature of his illness. We are getting better, and we'll take the victories, no matter how small. Our hope and prayer is that in due time we will have a diagnosis, or at least a long-term treatment plan and prognosis. This little man has big plans, and we need to keep him healthy!
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The lab is checking Sam's counts daily now, watching for reactions to the various medications. The doctors think he is having an adverse reaction to the Pneumocystis antibiotic Bactrim. They've moved him to an oral antibiotic now instead (Mepron). I guess they're hoping that will stabilize his white blood count and eosiniphils. The steroid prednisone is now being administered intravenously instead of orally. Our discharge date was pushed back again (not that we ever really had one expressed, only implied). It looks like Monday or Tuesday now, assuming we can get Sam to react well and take both the antibiotic and the steroid. Not surprisingly, our doctors do not all agree on everything. We can understand and even appreciate that, but we get a different picture painted for us every time the door opens.
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"Immune dysregulation" is the latest term to describe Sam's condition. If it's unclear, you're not alone. The positive news is that Sam's mytogen responsiveness (ability of cells to fight off infection) was markedly higher than it would be if he had a SCID. So, we're out of the woods on a "bubble-boy syndrome". Which leaves us...still guessing. Immunology told us today that we may never have a name for his affliction. Not exactly what a parent wants to hear. It's frustrating to hear conflicting messages from our doctors (even if they only differ slightly). We are well past them needing to sugar coat a diagnosis to keep us happy. We've been up and down enough already. For now, we know his immune system is performing only moderately well with a steady steroid dose to fend off the eosiniphils. He needs to wrap up a couple more days of IV Bactrim, then we can continue the bulk of his treatment at home. We're preparing for some significant life changes to accommodate at least the next few months until we can see the progress of his weight gain, steroid treatment and milk allergy. We've prepped the kids for the change; we're getting ready to keep him mostly isolated without him feeling isolated. In the meantime, we are trying to focus on the fact that he's happy, he's here, and we're a family.
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We received some disappointing news today. Up until this morning we held hope that Sam was immune compromised only due to his milk allergy/malnutrition + steroids. We found out today from some additional bloodwork ordered yesterday that he is immune compromised despite the other factors. We are back to waiting for the Mayo results, which may or may not be definitive. We need to find out what kind of immune deficiency he has and how bad it is. We are quite devastated. We are getting really tired of the roller coaster of good news/bad news. It is truly exhausting to have such emotional highs and lows every day. It's so hard as a parent to not hope for the best, but the associated reality slap that comes when your hopes are dashed is emotionally draining. Your continued prayers and support are well-appreciated and needed. We thank you for all the support you give us.
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In contrast to last Wednesday when he was admitted, Sam is the picture of health. He is happy and smiley all the time, he's eating well, and he has some color back. We often find ourselves asking why he's still in the hospital. They are slow to release him for three key reasons: 1. He needs to have had 5 days of IV antibiotics for the pneumocystis due to the superior absorption of the IV version of Bactrim. 2. He has not yet gained weight. He's eating enough to maintain his cuurent weight, but not enough to gain. Since he's still significantly below the threshold for a baby his age, they want to wait. Malnourishment or undernourishment are key causes of some of the symptopms he's been having. 3. Even if he does go home, he needs the same strict protective isolation here as he's in at the hospital. Until all the SCID tests come back as definitively negative, we have to be very careful. So, he's not coming home today, but there's a chance he'll be discharged tomorrow. Right now we're just working on coordinating his follow-up visits and making sure HealthPartners will cover the Amino-acid based formula he needs to drink now.
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Sammy did well today. The test result for both CMV & HIV have come back negative; we aren't surprised by that. The feeding tube was turned off today and Sam has been taking bottles well. The decision to take the tube out completely may happen as soon as tomorrow. He is doing well on his new hypo-allergenic formula. He seems to be gaining more strength and trying new things. Another bacteria was discovered from his bronchoscopy today, mycoplasma. As a result, he started on another antibiotic. The good news is that his current IV has been in place for over 24 hours without incident. The longer this one stays in place, the less likely it is we have to do a central catheter.
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We have 3 departments concsulting with each other on Sam's case: Pulmonary, Infectious Disease, and Immunology. We feel like we have a great team of doctors and that they are finally figuring things out. The latest: -The infectious disease doctor strongly believes that his current immune-compromised condition was caused by his treatment from his last visit to the hospital; by being malnourished and getting a strong steroid treatment. -The preliminary test for cytomegalovirus has come back negative, but the final test is still pending. -Sam's x-ray of this morning showed improved function of the lungs. -He has been able to take several bottles today along with his feeding tube. They even turned it off for 3 hours today and let him bottle feed. He did well, so they will most likely keep moving in that direction tomorrow. -He lost his 2nd to last IV this morning. He has been poked so much that he has little pricks all over his hands, arms and feet. (along with the bruising that comes with each failed attempt.) If he looses this one, they will either leave it out or put in a central line, depending on what treatments he still needs. Over all he is looking good. He smiles and even tries to laugh. He is capturing the nurses hearts with his bright eyes and flirty smile.
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Well, Esther stayed the night at home last night, and I camped at the hospital with Sammy. He did very well, and he's starting to get some appetite back.
By far the worst part of the day was at about 7:30 am the morning shift nurse came on to check vitals and noticed Sam's IV was occluded and had dumped a couple hours' worth of solution and antibiotic into Sam's arm, not his vein. His whole arm was swollen around his tape, and was very tight. It looked excruciating, but he did not complain. I was irritated that the night nurse either did not notice it, or decided not to do anything about it at the end of her shift. I'd like to assume the former.
The problem, though, is the fact that every (and I mean every) useful vein has been tapped and has subsequently occluded and/or collapsed. We're being told he needs to be on IV antibiotics for 10 more days, so there's a possibility of having to install a PICC line or some other semi-permanent peripheral line. Yuck. This poor kid has been stuck so much lately. Last night on the third IV attempt he didn't even flinch. I will take that as an answered prayer.
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The implications of the pneumocystis diagnosis have been weighing on us today, with all the worst-case scenarios playing out in our heads.
In 99% of the pneumocystis cases there is an underlying severe combined immune deficiency (SCID) that requires treatment. That could range from HIV (which has been ruled out) to hyper eosiniphilia or cytomegalovirus.
In 1% of cases though, the best-case scenario is that an aggressive steroid treatment combined with a sever milk protein allergy and malnutrition creates a temporary weakness of the immune system and causes the T-cells to stop functioning properly. Fortunately, this matches Sam's history and may be the only root cause of the pneumocystis. Meaning, he is very allergic to milk protein, and needs a hypoallergenic diet until he grows up a bit at least.
There is still a chance that this is not the cause and he is severely immunocompromised. For now, they are treating this as a SCID and he is in strict protective isolation to protect him from any other illnesses that could set us back again. The test results to rule out the other SCIDs are in the works now at Mayo, and will take at least until next Friday, possibly Monday. So, we are here for at least another week.
We're trying to focus our positive thoughts and prayers on that best-case scenario, though. His treatment is going well; he's still being tube-fed and is regularly taking a couple ounces of hypo-allergenic formula to top off.
Good night, and thank you for your support and prayers!
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One of the rounding clinicians came in last night and informed us that his lung tissue sampled positive for Pneumocystis. http://kidshealth.org/parent/infections/lung/pneumocystis.htmlPneumocystis is obviously not the concerning part of the diagnosis, what's of concern is the underlying lack of immune system defense that allows a common fungus to act the way it does in Sam's body. He started on another PCP-specific antibiotic and an aggressive steroid treatment. We are anxiously awaiting yet more test results to help us understand the underlying immunodeficiency and he we can treat it. None of the options sound very good to us. We appreciate the prayers and support from all of you. More later...
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The bronchoscopy and Upper GI scope both went relatively well. They decided to add a feeding tube to the equation as his failure to thrive recently is just as concerning as his pulmonary issues. Both surgeons took sample tissue from their scopes for additional testing. The GI surgeon said that the passageway from Sam's stomach to upper intestine was smaller than he expected, which may be contributing to his diminished appetite and failure to grow. We should be getting some definitive results from the tests on Friday. They did not have to put him in the ICU, rather he is in the Intermediate Care Unit (IMC) with a dedicated nurse for the time being.
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Sam was panting tonight, apparently really laboring to breathe. It was 3AM and he was not sleeping, just working on inflating and deflating those little lungs. We called our pediatrician's emergency nurse line. When she heard him breathing she told me to "hang up the phone and call 911". Even as we got him ready to rush off to the hospital in the middle of the night and gave him a blessing he was smiling and cooing at us. The bronchoscopy is scheduled for 4:30PM Thursday.
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During the past two weeks we've noticed occasional wheezing and some labored breathing. Esther has said Sam looks a little gray, though I haven't noticed it. She took him in for his 4-week follow up with Dr. Wheeler the pulmonologist on Wednesday and due to the symptoms, he ordered a CT ( Computed Tomography) scan. The results were not good. We find ourselves with still diminished lung capacity and still significant growth of infiltrates in the lungs. They are still talking about reflux or aspiration of food, but as Dr. Wheeler has said, "Nothing is ever easy with Sam." He is ordering a Bronchoscopy, Upper GI scope and lung biopsy for later this week.
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 I can't believe we are all back at home! The 4 doctors consulting on his case all agreed that he was looking well, and since he had been off oxygen for 24hrs was okay to come home. The pulmonologist said he didn't want Sam catching anything else in the hospital, so after stocking up on nebulizers, steroids and antibiotics, he was finally released! The nursing team of Children's Hospital's 7th floor is the best we've ever seen. They were courteous, caring, attentive and inciteful. They offered sound advice and frank feedback, even when it was hard to hear. We know that several of them were heaven-sent and arrived just when we needed them. They were indeed angels unaware. We are so happy to be ending this hospital blog. We can't do so without expressing our humble gratitude to all of you. To the house cleaners, the kid watchers, the caring phone callers, the soup/casserole/carrot cake makers, the care basket deliverers and the grocery shoppers. To Esther's family (who all about hopped on a plane Thrusday when they heard of the bad turn Sam had taken) and to the sister who did end up coming. To Steve's family who dropped their lives to be there for anything we needed. To all who sacrificed time with their own families to make sure we were comfortable. To those who took on shuttling and feeding and playing with our kids. To the shoulders we cried on, and those who cried with us, as well as those who listened and empathized. Especially for the prayers and positive thoughts sent our way. We were overwhelmed with phone calls and door bells and emails and foodstuffs (mostly General Mills!). We are more than humbled by your sacrifice. We feel so very blessed and loved. For the burdens you truly lifted we are indebted to you. You have done more than take a bad experience and make it better, but you have taught our children what a great blessing family and friends can be, and that charity is the pure love of Christ. -----------------------------------------------------------
These pictures were all taken Saturday when Sammy was feeling better...
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The swallow study will now be done in clinic sometime next week. The pulmonologist really wants Sam out of the hospital before he catches something else. Arrangements are being made for them to come home tonight! Sent via BlackBerry by AT&T
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Sam had a great night off of oxygen. He looks great again today.
All the doctors have agreed that he should be able to return home today.
Steps are being taken in that direction as well! Yeah!!!
His swallow study is still pending, but if that comes back negative then we should be able to leave.
He will have several follow up visits in the next few weeks and will need to continue a nebulizer for the rest of virus season...
Thanks again for all your help, thoughts and prayers. We couldn't have made it through this without you all.
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Sam is still doing well off of oxygen. He has had 3 doctors consulting about him this morning and I'm waiting to hear from pulmonary.
His swallow study is rescheduled for tomorrow morning, and I'm waiting to hear when we will go down for his chest x-ray today.
His coloring looks so good and he continues to be a very happy baby!
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Sam is still doing well off of oxygen. He has had 3 doctors consulting about him this morning and I'm waiting to hear from pulmonary.
His swallow study is reschedueled for tomorrow morning, and I'm waiting to hear when we will go down for his chest x-ray today.
His coloring looks so good and he continues to be a very happy baby!
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Sam is looking even better this morning - the oxygen was disconnected this morning, and last I heard, he has been breathing air on his own for over an hour, maintaining safe blood-oxygen saturation levels. One cord down, two to go. Rumor has it we'll be able to get rid of the IV later today as well. One of the doctors came in this morning and said he'd need to stay a few more days to finish the antibiotics (I'm sure HealthPartners would love that!), and Esther insisted we could finish that up at home. It's looking REALLY good for a Tuesday discharge. On the docket for today: xray at 1:00, hoping for some signs of improvement there. Swallow study thereafter to look for any ingestive abnormalities. More on test results later...
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Dr. Wheeler (pulmonary specialist) came in today and cautioned us about our surging optimism. He made a good point: the patient presents well and obviously feels better, but the xray and test results still indicate there is a problem. The xray he said is way outside the range of "normal" baby pneumonia. Since the test results are only ruling things out, we have no clear answer on what is going on. The bronchoscopy is still very much on the table, if not while still hospitalized, maybe in the following weeks in the clinic if a cause is still not clear. He indicated they'll run at least 10 tests from the bronch samples. Also a possibility is a lung biopsy. Long story short, something more complicated and less obvious is still going on. They plan to do a swallow study before we're discharged to see if the food goes down the right path, and if there's any reflux. We are not talking about discharge yet, and since he's still on oxygen (70%), we're still at least a couple of days away...
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Well, according to this morning's xray there was little (if any) improvement since Thursday. But, as we've heard, the chart is less important than the patient. Sam the xray film is very sick, but Sam the baby is having a very good day. Spirits are very high as he has really bounced back from a bad morning. He has been alert when he's awake, coughing less, needing less oxygen, and sleeping soundly. In fact, for the first time in over a week, Esther left the hospital for a couple of hours, and he took a bottle from dad! It's been a long time since he's done that. We are cautiously optimistic at this point that he really is making strides in fighting this off. Whether it's clinically attributable to the Azithromycin or the steroid, I know that the prayers have lightened our load.
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Dr. Wheeler said the xray from this morning shows a very slight improvement, and feels more comfortable with continuing the steroid treatment than proceeding with a traumatic bronchoscopy. So, for now we are just holding tight, looking for signs if improvement. If he's better by monday, there's a good chance he'll go home early next week. Sent via BlackBerry by AT&T
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He slept fairly well, and we got a good xray. Waiting on radiologist interpretation as well as consult from the pulmonologist as to whether to proceed with bronchoscopy. Our layman's interpretation of the film is no change. Third round of azithromycin and second round of steroid given. Still waiting on some test results. No food since 4am, so he is grumpy.
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The outpouring of help, food and general support from our family and friends has been staggering. We can't keep up with the phone calls offering support. The fridge is full, the house is clean, the kids are happy, and we are humbled. Thank you. I truly can't imagine how we would have been able to make it through without you.
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Sam started out well, then struggled a bit in the late morning. The clinic doc came in today while he was down a bit, and our request for a pulmonologist was entertained. We spent a good portion of the day making calls to get advice and request consults. Both Jim Sidman and Bruce Ferrara from Children's Surgery International (CSI) helped the cause move forward. Dr. Wheeler (pulmonologist) consulted on the case today, and we really made some good strides from his visit. He prescribed a dose of steroids to try and get the inflammation and irritation down. Sam was SO alert and fun tonight - for almost two hours he was smiling; almost laughing, and very aware and lucid. His IV was not flushing tonight, it was bent inside him, and he got his 3rd IV tonight, this time in his right foot. Tomorrow will be a decisive day. Dr. Wheeler has provisionally scheduled a bronchoscopy for 8AM, and will proceed if the morning's xray does not reveal an improvement.
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We spent a lot of time today working on getting the right people involved in Sam's care plan, calling in favors from our friends at CSI and leveraging some of the best nurses on the face of the earth. It was, again, a day of high highs and low lows. Our clinic doc always comes in the morning when he's doing well; then when he struggles later in the day it's just Esther and the nurses pushing him through. Today Sam and his mom hosted multiple new doctors and Sam's blood was distributed to labs for testing, trying to determine the cause of the pneumonia and why it was not getting better. Today we installed IV number two, this one in his left foot.
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Wednesday was when things really took an unexpected turn for the worse. After some concern over his labored breathing pattern and severe coughing bouts, another xray revealed that the pneumonia had actually spread to both lungs since beginning treatment. As the antibiotics were not improving the situation, the pneumonia was either viral or a more severe bacterial infection. Until now, we'd really felt that any day now we'd be heading home, well on our way to recovery at home. The events of today really dealt a severe emotional blow to both of us. Esther had not left the hospital since arriving Saturday and was really looking forward to some time with the kids and a good night's sleep. I arrived at the hospital after the kids were in bed and we had a good cry together. Dr. Amanda came in and we had a lengthy conversation about next steps and how we ensure that progress is made and Sam gets appropriate attention. It was time to step it up. We gave Sam another blessing tonight, and we had a great experience together.
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Sam really seemed to be making good progress Monday, Tuesday and parts of Wednesday. He would have some down times, but would widely fluctuate between alert and happy to some pretty severe coughing bouts and a very listless disposition. In those days though, doctors continually indicated that he was improving and they removed his IV, lowered his oxygen intake and gave envouraging words. Diagnosis was pneumonia in the lower right lobe.
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As all of you know, little Sammy joined our family in November of 2007. Sammy picsIt wasn't long afterwards that Esther discovered a bulge near his abdomen. About 3 weeks later, Sam went under the knife for a hernia operation. The surgeoen repaired not one, but two inguinal hernias. Sam recovered quite well from the surgery. Just a week or two later he contracted the sniffles from Olivia (can't stop smothering him) and things escalated. Last Friday he went to the clinic and was diagnosed with pneumonia, but was still fighting it well. The doctor sent us home, to return on Saturday. Saturday morning, Sam's blood-oxygen saturation had dropped into the low 80's and the doctor ordered us to head to the hospital. After a few minutes in the ER, Sam had his own room on the 7th floor. Molly was his first nurse, and got us off to a great start. Our initial idea was to be out of there by Sunday or Monday and back to our normal routine...
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