The following is directly from Ethan's Facebook Group Page; A blog that was used to keep everyone up to date on his status. There may be typos, there may be some areas not 100% medically correct. However, these are his father's words, the way he coped, and his understanding of how things were going. To preserve the original moment, no updates or modifications were made to the content, hindsight or not.

First of all, he's OK and stable. They did have to reintubate this morning around 5AM. It seems to be a trend that he get so much gunk built up that the suction doesn't work. They do suction him regularly but it appears that it's "deeper" and the only way to get it out is through replacing the tube. When they did it, they saw all the crud and got it out. It was around 5AM that his oxygen needs increased and his saturation kept falling... After he was reintubated, the mucus was removed, and they also moved him back to the conventional ventilator. He was "out growing" the oscillator since it was already on very low settings. Since this morning when that all went down, he is on the vent, breathing fine, gases are fine, and he is comfortable. At the end of the day, the fluke today was a mucus plug. Nothing more. The positive was he is on the conventional vent that he can handle. Literally as I was typing, the doc came in saying he is still over-ventilated. That just means the machine is doing more work than it should... so they are turning down the settings.

He is peeing a bit better, they want to see about 24 ml a day and he had about 30 yesterday. Sure, they want to see more but this is at least above par.

They sent another blood culture yesterday... hoping that is comes back negative. The longer it takes to come back "positive" (or never at all) the better. If you recall, it took about 10 hours, then 12, and then 18 hours twice for the growth to show an infection existed. We're at about 20 hours and no growth. Most likely Infectious Disease will want to see 72 hours of negative before we can confirm the infection is gone. We are almost at 24 hours negative.

His sodium is back up to 137, normal range. They are hoping to maybe hit about 140ish and that way they can order up some diuretics to help release the fluids. It's a balance act because the diuretic can lower his sodium and electrolytes... Since his are finally normal, we want to be cautious to not lose control again. He didn't respond well to lasix (a diuretic) before so I am a bit skeptical. But also, his creatinine levels (kidney function) were high.... as of this morning they are 0.8, the lowest ever..... a good thing. Maybe now if they order the diuretic, because the kidneys are working better, it would actually help to flush things out. His weight last night was 1 pound 15 ounces... an increase of 40 grams (about an ounce).

He is moving slightly... definitely not the active boy he was, yet. He does respond slightly to grabbing your hand. I "teased" him and put a finger next to his hand... He would scrunch his eyes and raise his eyebrows and bend his wrist looking for me.... It's like if his eyes were fused still. I think he is just a bit too weak and probably all the fluid is preventing him from opening. But I won't be surprised if today or tomorrow he is opening back up. It was nice to see a controlled reaction/movement. Yes, like any baby there is some uncontrolled. But these are positive signs, if you ask me, considering the confirmed brain bleed. Again, we don't know how much, if any, damage but at least this is positive.

Besides this morning's hiccup with the mucus plug, he is great. Gases are back to normal, blood sugar is perfect, the boy is peeing, he is showing some controlled movements, the blood culture is still negative, his C-Reactive Protein (CRP can help indicate infection) is dropping, his White Blood Cell count is dropping, and his sodium is back to normal.

We can't ask for any more. The doctors and nurses seem to be on the right path. But considering where we dropped to, I have to believe it's been the non-stop prayers and support. Each night I tell him how proud I am of him and his fight. I tell him how there are so many people behind him fighting...Thank you.

Lastly, several folks asked about a GoFundMe or asked if the t-shirts would be available again. Thanks to Terry Harris and Pam Denneny, there is a GoFundMe account should you want to help. No obligation of course, but I'll probably just say it "once" for those folks that asked about it. Also, Andrew Mametz re-opened the Bonfire shirts so those are available for those that missed out. The idea behind the shirts was for you to get them, take a pic wearing it, and I could hang in Ethan's room to really surround him with love. Both are very generous and we are extremely thankful.

(Closed) GoFundMe: http://www.gofundme.com/kaqbqw
(Closed) Bonfire Funds T-Shirts: https://www.bonfirefunds.com/ethanstrong


Thank you for your continued prayers and support.
‪#‎EthanStrong‬

Three weeks old. Wow. Let that sink in for a bit. You don't have to be a pessimist but just to think three weeks ago at 6:29AM, Ethan was born at 1 pound 1.13 ounce... 23 weeks 1 day (17 weeks early).

Ethan had another pretty good night. He did have a couple bradys (Bradycardia, the full name, is when your heart rate suddenly drops). This is very normal, in preemies, along with apnea (periods of time where he stops breathing). He has had these both before and tends to recover almost immediately on his own with no intervention. Last night, nothing different... recovered on his own. That was his only "down" of the night... which again, is not abnormal for a preemie. Can't really complain about that.

His sodium is up to 144 so they will actually start to cut back on the amount he is getting. He peed about 23ml in the 12 hour shift, which again, is great. He lost 45 grams (equates to about 1 ounce). Just so you know, things are measured using the metric system... Just about everything they do is based on "per kilogram" so often times they refer to grams (metric system) as opposed to English system.... It's not a drug ring at Bronson measuring everything in grams. haha.

His platelets shot back up to 140. Platelets will get eaten up during infection and also used for clotting (drop for significant bleeds).... 140 is the normal range.

They took a blood culture on Saturday, and so far, no growth. It's an official "no growth for 1 day" and unofficially about 30 hours of no growth.

He is continuing to pee enough to make them happy so not much more talk about adding a diuretic. It's going to be a slow process to lose the excess fluids, but he is heading in the right direction. I look at it like weight gain... you can gain 20 pounds in a few weeks but should, safely, take a couple months to lose it. If we add a diuretic, he could lose the fluid too fast, lose heart volume, blood pressure drops, etc..... Not good stuff. Slow and steady.

They did try a spinal tap this morning. I know folks on here, myself included, wondered why to try it if he is getting the meds for meningitis anyway. It sounds to me that since they found "gunk" in his brain scan, indicative of infection, and the overall swelling of ventricles.. they really want to make sure they know what they are dealing with. Is this meningitis? Is this an infection? Are those actual clots from a grade 3 bleed? Maybe just swelling from the meningitis? I'll talk to her in person today (we're still home) to confirm but that's the impression I got from our conversation. It's really to know "What we're dealing with (doctor words)." So when you think of it that way, considering the abnormal brain scan, it's important to know what we have here so we can treat/assess properly. The spinal tap this morning did not work due to all the fluids. They didn't force the issue so may try again tomorrow or another day.

Clinically, he is looking better. Still not crazy active but slowly increasing his movements. The nurse last night mentioned he wiggled a foot... something I haven't seen (I've only seen his left wrist/hand so far). I don't expect him to be kicking and slapping like he was, overnight, but these steady improvements are very encouraging.

He did lose his IV in his right hand... it is hard to keep them in with such fragile veins and the edema (excess fluids.. Imagine when you twist an ankle and see that crazy swelling). So....... they had to put a new line in. The broviac catheter is his literal lifeline, but there are certain meds that cannot mix in the same line.................. they put the secondary peripheral in his head. This isn't anything "bad" either. Very common. Of course, arms and legs are preferred but with the edema, this is probably the most "secure" place. This could be a very "cute antennae" or sad looking. Maybe a pic to come once we get there this afternoon. Either way, aesthetics mean nothing as long as he gets what he needs.

At the end of the day, he continues to improve and really not much change or to report. Leave it to me to still provide a lengthy post for "not much change."

Thank you for your continued prayers and support.... They are definitely being heard and working. I don't think anyone can deny that.

‪#‎EthanStrong‬

Fortunately (??), this will be a quick update with not much new as there really isn't anything new to report.

Yesterday, his blood culture did come back positive. However, this time it took 1 day and 21 hours to show growth... still for the same infection. The culture was taken around 2PM on Saturday and he started the increased antibiotics Friday... so maybe it wasn't long enough to really do the job? Maybe the infection is in the broviac and won't fully go away until that is removed? Not sure. The docs "hope" that the new meds will sterilize the broviac as that is his life line. I think, the worse case will be that the infection doesn't go away and they will have to remove the broviac *after* they get a PICC in place. However, he needs to reduce his edema and overall puffiness before they can even get appropriate access. I suppose the good news is that if this had to come back positive, at least it took 45 hours vs. 18 hours... so clearly progress in treating the infection. They took another culture on Monday around 8PM so hoping that takes, at minimum, longer or even negative for 48 and 72 hours.

All of his counts, CBC (Complete Blood Count), have been acceptable. I say acceptable because some things are still slightly elevated but that's OK considering.... in the end no changes to meds or treatment. His sodium is now 148 so they are backing off on the amount and actually ordered lasix (a diuretic) for 6PM. I would imagine that they will monitor his blood pressure to ensure no major dips (i.e., ensure that he does not also lose heart volume and therefore BP drops). Right now, because he has been so stable, they are taking his BP every 30 minutes... I'll ask them to take every 15... at least for the first few hours of the lasix. I'm paranoid. Let me be. ;-)

There are no other orders today... he is resting. His oxygen needs are down to 24% which is darn near room air (21%).

He did gain 10 grams since yesterday. They like to see about 20-30 grams gained per day... since he is also trying to lose weight, maybe he really did "lose" since he didn't gain as much as they would expect for a normal baby. He has been getting lipids (good fat) as well. At the end of the day, for all we know, he may grow in to this new weight (1 pound 14 ounces) as the edema goes down and he gains "good" weight. His urine output continues to be good but I think the lasix is to get a couple big pees to help remove the excess fluid.

Pru and I are still at the house (I've started to work again).. so that's really a good sign since we feel that confident in his stability. Unfortunately, our other, fury, baby (Bo) started to limp the other night. Since then, he started to whimper when pushing off a back leg... so yeah, off to the vet this afternoon for him and then to the hospital for Ethan.

I'll keep folks posted if things change but as I said yesterday, the prayers are working for Ethan. I hope he continues this track, loses some of the edema so he can get more active and his respiratory (my guess) won't have to work so hard with all that extra weight/fluid pushing on him. He was trying to wiggle his head yesterday, but with such a big chin/neck, you could tell that restricted his movement... little man is trying hard!

Thank you for your continued prayers and support.
‪#‎EthanStrong‬

Once again, Ethan had a pretty good night. No issues at all. He didn't really react to the lasix as much as they would have liked... each diaper (three changes) last night came back 10ml, then 6ml and 6ml. They were hoping for more 10-15+ but oh well. He is looking better as you can see in the picture. Even though he is 850 grams, they are estimating his dry weight to be around 750 grams... so call it another 100 grams to lose (1 gram = 1 ml).

He is still puffy and you can see the edema in his head (hence the cone shape) but all this will mold back to normal.... Sure, you'd like to see him shaped correctly but aesthetics don't mean much as long as he is healthy and continues to improve.

He isn't moving much more than before... currently moving both hands, bending at the wrists, and can squeeze his toes on both feet. You can sort of see his personality coming back with facial expressions. His eyes are not open but you see the scrunching of his eyes and forehead when they fool with him... but then he raises his eyebrows, fighting to get those eyes open, when mommy and daddy talk to him. He's on his stomach now for no particular reason... just an effort to maybe shift the fluids around and "why not?" He does look pretty comfy.

They are starting to ween his hydrocortisone (steroid for his lungs) since there are no real issues there. His oxygen saturation is still maintaining in the 90s with low settings around 24% oxygen. They did bump his tidal volume (TV... Number CCs of air they are pushing per breath) up to 3.0 from 2.8. The doctor felt the additional expansion may help the fluids in his chest (not in his lungs, rather, the edema collecting in his chest area). He is also at a Rate of 50 (rate is the number of "forced breaths" per minutes). Overall, he is still low on his settings. A tidal volume of around 4.5 cc/kg isn't much machine work... so with his dry weight, he isn't really on a ton of support. This is all good so we minimize long term lung damage... sure, we still want him off the vent and on a CPAP but we're just risking the lungs at this point to ensure he is as comfortable as possible (i.e., don't want to challenge him too much) while he recovers.

He does have a follow-up brain scan coming up Thursday night/Friday morning... they do them overnight when it is quieter. We're really hoping that things are improved or the same. Since it was evidence of bleeding (with clots), I would guess no more clots as a good thing assuming there is no more bleeding. I suppose, at minimum, we are praying that there is not additional fluid built up and there is NOT evidence of additional bleeding.

He is back on breast milk again... always nice to get the natural stuff. They are starting him slow on that, 1cc/6 hours.

Also, Bo (our fury baby), should be OK. No tears, breaks, etc.... The vet thinks he maybe pinched something in his back... Which maybe happened chasing my brother's cat on the wood floors. He took home a couple meds that should help. We noticed some thoughts/prayers for our pup too so wanted to make sure you were updated on him too! :-)

Thank you for your continued prayers and support.
‪#‎EthanStrong‬

Great night. He's peeing good amounts. Blood culture is still negative (about 68 hours now). Nothing more to report. I'll let the picture do the talking... Picture is of Pru holding Ethan for the first time.

(Edit: He is 1 pound 15 ounces and about 12.75 inches... Hard to measure both with the edema which gives him a cone head and the excess fluid.)

Thank you for your continued prayers and support.
‪#‎EthanStrong‬

Ethan is continuing to have a great week... no dips or really anything. I think after the big dip he took last week, and the additional "dip in that dip," he was nice enough to give us a pretty positive week.

Last night he had another brain scan and there is not really any change from last week which is good. They still see some of the clots and enlarged ventricles but it's not worse. This is something that would take time to resolve... so we were really hoping for "no change" this go around and got that result. The doc has ordered a follow-up cranial scan for 2 weeks from now (Feb 8). The hardest part is, as mentioned before, we just don't know to what degree there is damage. All we can hope for right now is more and more movement out of him. Pru and I are continuing to talk with him, hold his hand, and, like yesterday, kangaroo care.

From a CBC (Complete Blood Count), Sodium, Phosphate, and Sugar perspective he is all normal.

They are continuing the antibiotics with the exception of one, daptomycin. There is a level that they monitor and when it gets too high, they need to cut back. He gets it every 48 hours so he may just get one more dose then be done. The blood culture is now 72 hours negative... which is fantastic. As with adults, you would want to continue antibiotics for a bit after you think the infection is gone. Not sure how long that is for him, but besides the daptomycin, he is getting 2 others. As of yesterday, he started to get a "4th" (now the 3rd) antibiotic. He did not come back positive but often with all the antibiotics, they could develop a fungal or yeast infection which can be absolutely nasty.... so, this new one is a preventative.

They looked at another spinal tap yesterday but didn't even poke since the edema was still in the way. The docs may try again today if possible but not forcing the issue either.

He is continuing to produce plenty of urine... While he is not gaining anymore, it's almost like if he is already growing in to his new weight. He probably still has another 3-4 ounces of edema but looks much better compared to last Sunday. Last night he lost 10 grams bringing him to 865 grams (1Ib 15 oz).

As you can see, no real change. He is continuing to get better, still not moving a lot but there is still a little more each day.

Thank you for your continued prayers and support.
‪#‎EthanStrong‬‬

Ethan has continued to do really well. The radiologist that read his last brain scan, a couple days ago, re-did his report comparing to last week's scan (which showed the enlarged ventricles). When comparing the two, there was improvement. The ventricles are definitely smaller than last week. From my understanding, the clotting creates an increase in fluid to not allow proper circulation. She showed us the images and you could see two ventricles (one on each side) and a third in the center. The two lateral ones would flow to the center one and then to the rest of the brain and spine. When there is clotting (typically from a bleed), the lateral ventricles can't really flow and therefore get enlarged while the center remains smaller (limited to no fluid reaching it). This week shows the lateral ones smaller and the center one slightly larger. Clearly showing better circulation and less fluid building up. That's good, obviously, since he could get a ruptured lateral ventricle showed the continue to be swollen. It's not back to normal, there is still swelling and you can see the clots. As mentioned yesterday, we were hoping for, at worse, "no change." The fact the ventricles are slightly smaller is a sign of improvement.

The doctor did make a comment about his respiratory... While he is on very low settings (Tidal Volume of 3, Reduced Rate of 40, Oxygen at 21%) and showing good gases, we are unsure if there are any neurological issues. It is nothing for certain. But it is something she mentioned. Right now his body is showing that is can tolerate the low settings... His respiratory itself is fantastic. But as you know, your brain runs the show of everything (how to digest, move, breathe, etc). So the back of the mind concern is if there was damage he won't be able to breathe on his own. He needs to start breathing above the respirator. He has shown that he can: The breathing rate is set to 40 and he would jump to 47. The doc would like to see him at a constant 50-60 showing that he really knows how to do it on his own. During the rounds, he was breathing right at 40 (the machine). Again, it's not a freak out moment but something to worry in the back of your mind. I keep telling myself that he is showing little improvements each day after getting punched in the face with the staph and sepsis.... so maybe the last 2 weeks or so are just a literal 2 weeks of "no improvements / setback" so we just need to wait an extra 2 weeks (i.e., he won't do 26 weeker things until he hits 28 weeks). The fact that he has shown the spontaneous breathing is encouraging.

Yesterday, they were able to do a spinal tap and have sent that culture to the lab to check for meningitis. There was also some blood so were able to send that as well to check for infection. We would expect it to come back negative since his other blood culture was negative. If it were to come back positive, this would let the docs know to extend his antibiotic treatment. If it comes back negative after a few days, then we may just keep going another 10-14 days. Either way, there will be a conversation with Infectuous Disease to make sure they do the right thing. I know others, like myself, have said just give them no matter what. But like yesterday, they started another antibiotic, as a precaution, for fungal (e.g., yeast) infections. Being on other antibiotics can make you more prone to other types of infections if on them for too long (as I understand it).

He gained about 25 grams (total 890 grams, 1Lb 15 ounces) which is a little frustrating to the doctors but at the same time he is looking better. He received about 100ml of fluids yesterday and peed 88mls. They would prefer to see 120ish right now since he is so edemous. At the same time, this is the best he has done as far as urinating closer to what he is getting. They will continue course today. Tomorrow, they will check with albumin levels and possibly give him a quick bolus (a bunch at once) and then flush it with lasix immediately after. He is getting a small amount of albumin now in his TPNs (Total Parenteral Nutrition).

Last night, he got this skin breakdown in his groin near the broviac. It appears one of the stitches came out. The surgeon will swing by this afternoon to assess and determine if a new stitch is needed or remove the old. The broviac stays, for sure, it's a matter of the stitch. Because he is so prone to infection, they need to do something otherwise this is another area for bacteria to enter. Granted, he is on many antibiotics as it is... but still a chance so they will mitigate that risk this afternoon.

He continues to be stable.. Prudence and I will also continue the kangaroo care daily for him as long as he maintains his stability. Once again, not really any steps back but rather some baby steps forward day by day. I figured my last couple updates were slightly anemic so figured to give a bit more color today. :-)

Thank you for your continued prayers and support.
#EthanStrong

Ethan has continued to do well with no major dips. They have bumped up his Tidal Volume (TV) to 3.2. His current weight is 890 grams and the estimated "dry weight" (excluding the edema) is about 800 grams. With that in mind, getting a 4cc volume per kilogram is right on par (0.8kg * 4cc/kg = 3.2cc). He does have moments where he is breathing over the vent (Rate is set at 40)... He'll get up to a rate of 50 or so and hang out for a couple hours and then back to 40. It's nice to see him try... Before we move to CPAP, the docs would like to see him consistently 50-60 total breaths (i.e., 10-20 above the vent)...

His spinal tap, so far, has also been 2 days negative for any growth (meningitis or any other infection). All of his vitals are pretty good too. It's been almost eerily quiet for him now almost the whole week. I know it's good but feels off considering the insane roller coaster we had the week of Jan 12.

His feedings have been increased to 2cc of breast milk every 3 hours. There was a little concern that he didn't poop much yesterday. They gave him a suppository and didn't work... Gave him another today and viola, poop. This whole week has been a lot of "ask, and you shall receive."

The surgeon came back to look at his groin area where the stitch from his broviac came undone. The opening is very clean and not irritated so they will apply some dressing to it (some type of seaweed based masking?) and then in a couple days come back and superglue it, essentially. Of course this opening is risk of infection but based on his current antibiotics and the fact they are doing the right things to keep it clean, this should not be an issue.

We're hoping to do kangaroo care today now that the surgeon made his visit... he's been very stable so shouldn't be a problem.

Thank you for your continued prayers and support.
‪#‎EthanStrong‬

4 weeks old! Just a few more day (the 29th) from being 1 month. A nurse mentioned the other day.... he was born on a Monday so we should do something special every Monday... no matter "how bad or how good," each Monday should be a celebration. Tonight, it will be out to dinner for sushi. You all have been such an amazing support system and part of his life so I encourage you to take a moment and have your own kind of celebration to be thankful for, the collective, "our boy."

Last night, for some crazy reason... the boy gained 70 (!!) grams. He's been peeing a lot... and pooping. I guess, "it happens?" The doc didn't seem too worried about it. Especially since he is peeing a lot, more than ever, and looking better. There is still plenty of edema that will be there another week or two, but either way, he is now 950 grams (2 pounds 2 ounces).

All cultures continue to come back negative... his latest was from his spinal tap and that's now officially 3 days negative. While we didn't learn anything new, this at least confirms any potential meningitis or other infection is not present. If it is, by now it's probably gone (i.e., if it does come back positive, it'd be after 4 days or so... meaning nearly eradicated).

He has been breathing quite a bit above the vent. A moment ago, he was taking about 19 breaths (total rate was 59) so that's really good. As mentioned previously, the more he can stay in the 50s and 60s regularly, the closer to moving to a CPAP. Either way, sporadic is good since he is showing a capability but we need constant to move to CPAP. At the time of this writing, Pru is doing the kangaroo care so I am sure that is helping. I guess this just means we have to do it everyday... that should not be a problem. :) By now, his latest blood work shows his WBC (White Blood Cells) are back to normal. His CRP (C-Reactive Protein... often high with swelling or an infection present) is back to normal. His platelets (clot when you are bleeding or used up during infection) are 220... Which is the highest I can recall him being. Sodium was very normal too. The only thing abnormal was his hematocrit (% of red blood cells in blood). They would like this to be around 30+ but his was around 21%. The doc does not believe this to be an infection or "naughty boy" issue. They have been taking regular blood, and the last one he got was over a week ago... so really no worries. Also, it was not terribly low (when he got sick, out of the blue it was 7% and they prefer to keep above 25%).

He was given lasix earlier to help remove the fluid. Typically he is not responsive to it but maybe today he is. He peed about 22ml and then 14ml... he actually graduated to a larger diaper since he is producing so much. Yes, the diaper is the size of him now but who is judging?

Lastly, the nurse did say he opened both eyes. This is fantastic... we sort of saw his left eye open the other day but they really haven't been open since before his staph and sepsis. While they are closed right now, the fact that he opened them is another baby, yet huge, step.

From a medication perspective, he is done with the daptomycin. They monitor is CPK (Creatine Phosphokinase - An enzyme found in the heart) and when that level gets to be too high, it is time to back off the daptomycin. He received it every 48 hours so not a huge deal to end it. The CPK is not terribly high but enough to end it. With all his other counts being around normal and negative cultures, I am sure it was fairly easy to end that med. In addition, he is still on rifampin, nafcillin, and fluconazol for the infections.

Thank you for your continued prayers and support.
‪#‎EthanStrong‬

There isn't a whole lot to say for today... sort of had a "realization" discussion with the doctor. While all his vitals, blood work, negative cultures, etc are great... He just doesn't seem to be moving as much as he should. Last week it started with some fingers, a hand, toes... other hand.... but there still isn't much substantial movement beyond that. In addition, his breathing doesn't seem to be consistently over the vent as they would like. Sure, respiratory wise he is fantastic but the machine is doing the work. Granted, the docs are not giving up... I am definitely not implying that they are. He is still on meds and still carrying a bunch of that edema... this isn't the end.

I guess we've been getting caught up a lot in the "he's great" and recovering from the infection when he needs to be doing even more.

The fear is just how much neurological damage did he get? Was there a time his brain didn't get enough oxygen? When he was getting sick, his oxygen saturation was dropping so much (hence the move to the oscillator).... Was there meningitis? Was there just the bleed and infection? Not sure. Even if we knew exactly what all happened, there is no telling the damage for sure. No matter how you put it, neurological damage could be what is causing the fact that he isn't breathing much over the vent and his lack of substantial movement.

On the flip side, as mentioned... maybe he just needs a bit more time to lose the remaining edema and be off the meds. I think that's the only hope at the moment.

Time will tell. But no matter what... These next couple weeks are critical to show some improvement that he can breathe on his own and make more movements. He does squint his eyes and raise his eyebrows as a "yes" or "no" type of response. We know he is in there... we're hoping that he can find himself and show his old self very soon...................

Thank you for your continued prayers and support.
‪#‎EthanStrong‬