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.
Last night they tried his CPAP but had to re-intubate after about 2 hours. Pru and I are a little bummed out about that… Even though we “knew” that he would take it for maybe 30 minutes or so and then back to the tube. Even this morning, the doctor said this would happen several more times. While it is comforting to know this is all normal and what they excepted, it was still a letdown since he had some hope there. Heck, the other day I said, “If he took this the first time then he’d probably break a record.” But again…. NOTHING bad. I mean, it was expected. Maybe like I also said the other day, we are a bit spoiled and expecting him to take things the first time, which is unfair… especially since it is normal.
The doctor has started a second round of indomethacin this morning to help the open PDA. He will get three doses, just as before and hopefully the open PDA closes. They think it could be closing slightly but either way, will try that. If they decide to use the hydrocortisone (steroid for his lungs) then they need to wait about 7 days from the last dose of indomethacin (puts us around noon Friday, Jan 16).
The PICC line should be there this evening, or worse case tomorrow. There is a blizzard warning on top of the -30 degree wind chill so hopefully that doesn’t delay the delivery. Later today, regardless, they will remove one of his umbilical lines, the UAC (Umbilical Artery Catheter). This is typical, (PICC line goes in, and umbilical lines go out)… The only “problem” means that our little guy will start being poked when they need blood.
Regarding the CPAP, they did mention a “RAM cannula” which is, firstly, smaller than the size 0 CPAP he tried but also the nostril tubes that are closer together, and longer. Normal CPAP prongs go in your nose slightly but the RAM cannula goes further and sort of threads through your nose further to prevent less air loss. This has been ordered and they will try again this weekend.
Today and tomorrow will for the most part be rest days with little interruption (except for the PICC line). I hope that the open PDA closes, even if just a little. He’ll get the PICC line but that is routine and shouldn’t affect any vitals, gases, electrolytes, etc. since it’s just a vehicle for his fluids/meds just as his umbilical lines operate.
Thank you for your continued prayers and support.
Update to come later... Pru and I are still at the house. There is a 90 car pile up between here and the hospital. We're safe.. Not in it. We may try later after 4pm when the storm should be done. I do have a number to the nurse to call whenever so we'll try to leverage that as much as we can. Definitely weird to not be with the little man but as you all are probably thinking, he needs us so we have to be safe.
The doctor hasn't done rounds yet but will call me after. The nurse mentioned he had an Ok night... Nothing much to report at this time.
They attempted to put in the PICC line earlier but were unsuccessful. This was with the even smaller catheter... The doctor will talk with the Transport Nurse later to see if it's worth another attempt through a different area. A lot of this depends on how long his UVC (Umbilical Vein Catheter) can stay in. Typically they want to remove after 7 days... we're obviously past that. An x-ray later today will confirm how the UVC line looks... maybe they can safely get another day or two. If so, they may try the PICC line from another area tomorrow. If not, then the option is to surgically put in a broviac catheter. It would be entered through his groin where they'd give a local anesthetic and some morphine. It's a routine procedure and actually even more sterile than the PICC so lesser risk of infection. I'll know more in the next 24 hours on how they want to proceed. Either way, they will want to do something rather fast since the longer the UVC is in him, the more chance of infection from his bellybutton/umbilical from being in for too long.
He received his last dose of indomethacin and the murmur does appear louder which is actually a good sign. The smaller the opening, the louder the murmur becomes. They would like it to close completely but that's not a requirement at this time... smaller is still better than the initial, large, PDA he had.
Just before Ethan received the CPAP, he had a TV (amount of air volume forced) of 2.1 and rate (number of forced breaths) of 40.... following the CPAP his TV went up to 2.8 and rate back up to 60. I asked the doctor why he is requiring so much machine support and the response was most likely during the CPAP attempt, his lungs lost some volume. This is typical... If you imagine a balloon, it's much easier to inflate if there is some air in it... but if you start completely deflated, it can be more difficult to inflate. Relating to Ethan, his lungs probably lost some volume while on the CPAP so they are helping him to "re-inflate" his lungs. The doctor is actually going to try and start weening the machine again and reducing his TV and/or rate today. I asked the doctor about the RAM cannula and he mentioned that he has some concerns since it is so new. It would be difficult to regulate the machine and know what settings are good/bad... since it it so new, there is very little literature for it. He would want to try the regular, size 0, CPAP again maybe in a couple days. Hopefully by then, the PDA has shrunk, if not closed, and his respiratory maturity has increased.
He is moving, looks good, and otherwise doing just fine today. Now that he is off the indomethacin, he will start back up on the breast milk tomorrow.
As mentioned in a brief post early, it doesn't look good for Pru and I to see him today. With the now 150+ car pile up and a couple additional accidents reported in the area, best that we stay home. The interstate is a major one so redirecting all that traffic to even back roads must be a nightmare. At least he is in a good state today so we don't have too much to worry about...
Thank you all for your continued prayers and support
Earlier today, Ethan had the broviac catheter put in. The surgeon said this went in pretty much as planned. The idea was to go through the saphenous vein and then in the to femoral. At first, it was a bit too small so the surgeon move up slightly and tried again, no issues, slid right in. They did an x-ray to confirm placement and it was just fine. If there are any serious complications, they typically appear in the first 24 hours. Of course there is always a risk of an infection but that can be treated.
His respiratory has been very stable. They are weening his machine needs down. Blood gases coming at 3PM to see if they want to make more adjustments but at the moment he's running a TV of 2.4 and Rate of 60. They would prefer a TV of 4.5/kg... being that he is 515 grams, that'd mean his idea TV should be just at about 2.3... lower just means even less machine but at least 2.3 is within the range. From there, they would look to decrease the rate again. Starting tomorrow, they may look at a different setting of the machine. The doctor didn't mention the name but basically it is while he has the tube still in, it sort of forces him to take breaths on his own. Very similar to the CPAP so it's like training just before they try the CPAP again (maybe in another couple days). It's very interesting because this is the 3rd doctor in 3 days... Doc 1 (the regular) says the RAM cannula is an option. Doc 2 says no RAM cannula, not enough research, stick with the CPAP. Today, Doc 3, agrees with Doc 2, but says there is a third CPAP setup to use and then said maybe we try the intubated training I mentioned. They are all geared towards weaning but sometimes a bit interesting to hear their opinions... at least they are all directionally in agreement.
Later today, they will try to get him back on the breast milk now that his indomethacin has completed. Speaking of... the murmur sounds "different" in a good way. The other day, it was loud maybe implying that it was closing. Today it sounds different as in not the Large PDA but just might be closing. It can be tricky because if it doesn't get small enough, then it's tough for the sides to connect and close. As long as it stays small, that's important to help with his respiratory. It could take months to close completely... but again, a small PDA is better than large!
Now that his broviac catheter is in, they were able to remove his last umbilical line (Umbilical Vein Catheter). Surprisingly, the tape did not make him bleed, it came right out and now we get to see the tiniest, cutest belly button... No really, weird as heck to say... he definitely didn't get that from dad!
No more major action today... rest and relax after this procedure and continue to be a rock star!
Thank you for your continued prayers and support.
Please say an extra prayer for Ethan this morning... We got a call from the doctor around 6am and she was a bit concerned. She got a call from the nighttime nurse practitioner that Ethan wasn't peeing, had low blood pressure, and a low hematocrit (% red blood cells)... All suggesting "a very sick baby." The doctor came in and they ran some more tests... It appears he may have some kind of infection.
They did an ultrasound to see if there were any clots, but found nothing... There is a deeper scan ultrasound they could run but the high-level scan seemed normal. An xray showed the broviac catheter is still in a good place. He seems much more healthy, now that she sees him in person, than his tests suggest...but clearly there is still something wrong.
They've started him on antibiotics, increased his fluids, stopped feedings, and also are giving him a blood transfusion.
They most likely won't test him again until late tonight or tomorrow as long as his symptoms don't dramatically change.
It appears we are having our first "step back" / bad day.
The worse part is that there are no real answers at this moment. It started with getting a call from the doctor (she was called in early this morning because of the issues) saying that he is not peeing, low blood pressure, and very low hematrocrit (red blood cell %). Additionally, there is another measure, CRP (C-Reactive Protein), that can be indicative of an infection if elevated... Ethan's was very high.
While he was taking the indomethacin (medication to attempt to close the PDA), they did reduce the amount of fluids. Then they thought maybe because of all the action yesterday between his procedure and the number of x-rays... pretty much he was handled a lot.
This morning they gave him two meds to help fight possible infection but no telling if they have really done their job yet. He peed ever so slightly, no not nearly as much as they would have wanted... especially the amount of fluids he has been receiving.
He also got a blood transfusion and this has helped his red blood cell count...
The color on him is great... he is very active, opening his eyes, and looks perfectly healthy.
It is starting to look like more of a kidney issue. His creatinine (measure of how good the kidneys are working) has always been a bit on the high side, but he was peeing so no worries. Now that he stopped.... there is a worry. It could be part from the fact that he is a preemie, part fluid loss through skin during the action yesterday, and part from the indomethacin. It's really just a waiting, and praying game that his kidneys start functioning as they should. They have tried a bolus of saline but nothing. In a bit, they will order lasix, a diuretic, hoping that will "jump start" his kidneys a bit to get working.
Additionally, his latest blood work came back with a very low platelet count. This could be the result of an infection.... The doc has ordered some meds that help fight a yeast infection. There is nothing definitive, but it's a possibility and something they can give antibiotics for without harsh side effects.
His blood gases were not that good yesterday and they've increased the machine support... they are getting slightly better but the machine support is still high... related to the possible infection? Maybe. He was a freaking rock star yesterday on essentially the lowest settings and took a step back there.
Lastly, they just completed an ultrasound to check on his PDA (in his heart). Unfortunately, the PDA is still open and large... so it looks like the two rounds of indomethacin did not work. Once they can clear up this infection, get those kidneys working as they should, and the blood gases back up, then they may look at surgically closing the PDA.
At this time, not much more to share. I suppose at the moment, as "silly" as it sounds... we need him to pee. We need those kidneys to start working as they should, again. After that, it's sort of one day at a time. The potential surgery for the open PDA would be maybe end of next week.... At this time, it's getting the kidneys back to where they need to be and taking care of whatever infection, if it exist.
Thank you for your continued prayers and support.
I just had a quick call with the doctor. Ethan is starting to pee a little... However, things have gotten worse.
His oxygen needs have dramatically increased which indicate possible pneumonia.
A blood culture did come back positive for staph aureus.
There are some possible indications of meningitis... The test is a spinal tap but they can't test just yet since he's already going through so much. Maybe in a couple days but did start some other meds just in case. The doctor said this is a very disappointing setback and things could go downhill from here... The next 48 hours are the most critical.
I'll try to post more later... But for the next 48 hours, no news is good news.
Religious or not, take a moment to think about our sweet baby. Please. He needs us more than ever.
Attached is his photo for the day.... not the best, of course, but this is Ethan today. The yellow ear muffs are to help since the oscillator is pretty loud. It sounds like the cam shaft in an older car... So yeah, loud, but it actually is a great solution for long-term care since it doesn't really have the damaging effects to the lungs that a ventilator and high machine support (from the vent) would have.
They are still unsure on the pneumonia... About 99% sure that it is there. There will be another chest x-ray tomorrow which should help confirm when compared to this morning's x-ray.
He does have a staph infection. It is still unclear on which type. The have a blood culture going on and that will help say exactly what kind of staph. Also, once the culture is ready, they will inform the Infectious Disease team so they can take action, as needed.
They are pretty sure he also has sepsis. That's not a good thing. Not at all. There is treatment and they have started it (actually started it yesterday).
He has gained about 4 ounces... I tried to select the best picture that doesn't show his real state... he is incredibly puffy and swollen. Those 4 ounces were about a 20% weight gain of fluids... Sooooo yeah, imagine that.
I can't comment much more.... long day, mentally and physically exhausting. Put it this way, we were told to think of three things at this moment: Keep peeing, maintain blood pressure, and maintain good blood gases. He did have a large quantity pee a moment ago and his gases have been improving. We must make sure he maintains those three things at this exact moment. Tomorrow, there will be other focuses.
Pru and I were given a room here at the hospital so we are staying just a few floors away from our boy.
Someone once told me, "Don't worry about tomorrow: for tomorrow will worry about itself. Each day has enough trouble of its own." That can't be any more true, especially at this time in our lives.
Thank you so so much for the support and prayers. Words cannot describe the gratitude Prudence and I feel, and have seen from everyone.
Ethan did pretty good through the night, relative to the current situation. He did had a big pee around 10PM but not a whole lot since then... Maybe 1 ml then 2, and then 1 ml. Typically, they would want to see about 0.5ml/kg/hour. For Ethan this would be about 0.32ml/hr... He gets a change about every 3-4 hours... assuming 4 hours, we'd want a couple grams (1 gram = 1 ml). The fact that he is so swollen and loaded with fluids, we'd still want to see something closer to 2 grams, consistently.
They did get the blood culture back and confirmed he does have staph (already known) but *not* MRSA (a certain type of staph that's not the best should you get staph). This is definitely some good news as the MRSA is more resistant to antibiotics. The medications that he has gotten so far are the right ones. My oldest sister, Carol, is here and that has been awesome. She's a pharmacist and has been really on top of things from the medication perspective. It's comforting to see when the doctors and she agree on the approach. The doctor also brought in the Infectious Disease person and they are also in agreement with the current direction.
At this time, he is stable. His oxygen needs have dropped a lot which is fantastic. The biggest reason for having to move from the ventilator to the oscillator is that he was on 100% oxygen on the vent but his saturation was still dropping. His oxygen saturation now is in the 90s and the oxygen levels has been in the low 30s (room air is 21% oxygen).
They may look to do the spinal tap later today... he is still a bit weak but we'll see how the day goes. This ought to help determine meningitis or not. It can sometimes take up to 48 hours for confirmation but initial results can show signs of meningitis (e.g., if the fluids have protein, sugar, or bacteria present).
He is also getting dopamine to help raise his blood pressure a bit. Indications of responding well to the antibiotics are that his blood pressure raises and he continues to pee. If those two things happen, they can start to reduce the dopamine since he is demonstrating the ability to keep the blood pressure at appropriate levels on his own.
I don't mean to damper things but at the same time, he is still in a critical state... he is no where near his "state" on Saturday... but at least he is heading the appropriate direction.
Thank you all so much.... again, still a bit of a step back but at least the dip in this roller coaster ride is taking a steady decline. I just hope the next dip (realistically, there will be one sometime) is only a minor one. Not sure our heart and stomach can take another big one like this.... Again, thank you all so much for the continued support and prayers. Ethan is a strong boy but I promised him last night that he is not alone.
On Monday, we were told "prepare for a dip on Tuesday... It will be there but let's hope it's small." Yesterday came and went... no dip. Unfortunately, we've hit that dip, big time, overnight.
Ethan isn't quite responding as best as they would like. They are upping his meds, dopamine, giving hydrocortisone, a bolus of fluid (seems like every other hour) to try and keep that blood pressure up. He didn't pee much overnight... They are calling it full on sepsis at this point.
I mentioned one particular doc, we prefer, as she is straightforward but always has a positive attitude and great way of teaching what's happening.
Today, for the first time, she looked me in the eyes and said she was worried.
Once again, we got a restart of "the next 24-48 hours are critical. We're doing everything possible."
They will almost certainly remove the broviac catheter and somehow try and get a PICC in. Maybe a week later since their last attempt, the lines are big enough for the catheter.
I've always tried to make sense and learn about everything happening as it helped me cope. I think having that particular doc has helped too (no offense to the other docs... they know what they are doing) but her attitude/approach has helped me keep my composure as well.
I think it really just hit me the moment she hugged me and said, "I'm worried. I told you I would be straight with you when I was. We're not done yet. I'm not done yet. We need lots of prayers.................... and medicine."
I'll keep you posted the best I can as I learn more and the day progresses. As hard as it is right now... I'm fighting hard to stay positive and continue the prayers.
I feel like I say this each day that "Ethan needs us more than ever" but these last few days have bee incredibly tough... He is fighting. Proof is the fact that the doctor says how great he "looks" and doesn't look sick (besides the fluid causing him to bloat). That's proof that he hasn't given up. I can't give up on my boy. I have to be strong. Mom has to be strong.
Keep the prayers and thoughts coming... I figured I would take a moment to help you smile while thinking about our little man.
As mentioned, he has the yellow earmuffs to help with the oscillator noise. Last night, he was given these shades to help with the bright light during care times... One cool cat.
The blunt truth: The goal on Tuesday was to ween Ethan off some meds due to progress. Suddenly the goal today was to keep him alive... "Give us a couple more days of fight, little man, and then you can rest because by then, the antibiotics should give you much needed relief."
Dare I say... he's had a mostly positive day heading in the right direction. There is an incredible amount of work left (e.g., He is relying on heavy meds to keep his blood pressure up)... but dammit, he's heading in the right direction....
This morning, platelets were 62... if <60, platelet transfusion. As of this post, they improved to 85. Yes, they should be 140+ but in the right direction.
This morning when I had "the talk" with our doctor, his blood pressure was dropping. They made adjustments and he is almost too high right now so if he keeps that trend, we may start to ween him. The fact that he is "higher than normal" could/maybe/hope/pray that he is starting to keep his BP up on his own.
Yesterday his white blood cell count was 28. This morning it was 25. And as of this post it went up to 42. Bad? Not sure... But normally a bad thing. The increase implies some infection... or getting worse. However, I managed to influence them to put in a urine catheter (You will know why tomorrow). I also learned that when a foreign object is introduced, typically, white blood cells will try fight it off for about 6 hours... His blood work was done 3.5 hours later. So maybe that's what was happening... who knows. They will recheck in the morning.
But the point is, there is some good... and some much needed work.
More details in the morning around the what/why/how but I at least wanted to let you all know, he's heading in the right direction in some areas. What more can you ask for considering the goal today was to keep him alive? The other night I quoted a friend (which is also from the bible), and tonight, I quote my brother, Trevor... "Ethan has already taught me that he is much tougher than us. We have to follow his lead and be strong for him."
Prudence and I will try and rest tonight... hopefully no late night or early morning call from the doctor.
I'll post more in the morning since there were several moving parts and hopefully I also have an awesome update to share.
As mentioned in the "Day 16 nightcap," Ethan was stable. As of this morning, overall, his numbers have improved compared to yesterday.
His blood pressure is still doing great and his heart rate is very normal. They are giving him dopamine and epinephrine to keep his BP up as he was unable to maintain it himself. The side effect of those medications is increase BP and increase heart rate... If his BP is dropping (as it was) these are then "good side effects." The balance game is making sure his rate doesn't go too high. As of now, his BP is great along with rate... Let's hope it stays that way... a dropping BP and increasing heart rate is a terrible combination. As his BP continues to climb, this would indicate that he is maintaining his BP himself and they would start to ween the meds.
His urine output has been dramatically improving. On Tuesday night when I changed him he seemed to have a build up of crystals "down there." As i wiped, he started to pee. I informed the nurse and it was nothing to really worry about. On Wednesday, the crystals disappeared... but by afternoon, they were back. At this time, the doctor was near so I showed her that as I wipe (mind you his diaper was basically dry), the crystals "cracked" slightly and he started to pee. I suggested they put in a catheter because of the crystallization and maybe this would relieve him. At first it was sort of a "no." Then next thing I knew, 30 mins later, the doc had suggested a catheter. Immediately, he had about 2 ml of urine. Overnight, he had about 20 total. This morning, in about 2.5 hours, he had 10ml. "Yeah, daddy is here for you bud... Sorry about the catheter though, ouch!"
His platelets, compared to yesterday are up... A slight dip from last night but day over day, they are up. Should at any point today, he require a bolus of fluid, they would most likely do it via a platelet transfusion. He's had enough saline pumped in so may as well increase the vascular volume, if needed, with blood. Sort of 2 birds with one stone.
Here's something we learned... his increase in white blood cell count (WBC) was actually a good thing. Typically, in an adult, as you treat you would want to see that number decrease to indicate being cured. At some point, we want Ethan's to come down, but right now this is good in a baby. At first, his WBC was normal-ish and crept up then dripped (14 to 28 to 25). The fact that he went to 40, and then 59 (this morning) shows that his body is capable of fighting the disease. Had his body not reacted by creating more WBC, then that would indicate either something else is wrong or he is not capable of fighting on his own (too immature). Sure, over time, we want it to go back down but again, this was a great indicator that his body is fighting now and it's not another thing they have to treat.
His previous two blood cultures came back positive for the staph within about 12 hours. The faster it shows as positive, the more active the infection. His last culture was 430PM Wednesday.... no results yet. Even if it came back positive, it would appear that the antibiotics are slowing down the infection and doing their job. The longer it takes to be positive, the less active the infection. A negative result would, of course, be ideal. The plan for today is to remain steady and sort of play it by ear. He is currently stable. His oxygen needs are slightly up (about 50% right now) and there sounds like it could be some fluid in his lungs but not really a big concern. On the flip side, he continually has good blood gas results and saturating in the 90s consistently. He currently weights about 1 pound, 11 ounces. That's 3 more ounces since yesterday and 9 ounces from when this all started last Sunday morning. The good news is that he is peeing more. A diuretic is not really an option since his sodium is low, and his electrolytes are good... so hard to increase sodium to retain but also flush fluid out without hurting electrolytes. It is something that will take time.
He's not very active either. You can see him wiggle his toes here and there. He is too puffy to open his eyes, but when you talk to him, he scrunches his forehead so we think that's his attempt to open them. The doctor isn't too concerned about the inactivity, yet. He was VERY spunky before... but we also know that he is overly puffy and very sick. You think about when we feel off, we are lethargic and take naps. I can't imagine many of us have felt the sickness he has... and if you have, I think he is perfectly fine being as inactive as he is. We just hope that as he gets better, he moves more. Otherwise, inactivity could be a sign of meningitis. Which, by the way, the antibiotics he is on now would treat. We may get to the point where we don't bother with a spinal tap since by the time we get there, he'd get his whole treatment, anyway. It's still very scary but we can just say, "He's stable. His numbers are better than yesterday. We're playing today minute by minute to determine how much we may need to adjust things."
Pru and I are planning to stay at the hospital again tonight since we're definitely not in the clear. At least things are in the right direction and we can let out a tiny exhale... but still holding the remaining breath and praying for continued good results today.
Thank you for your continued prayers and support.
A few quick comments for those still awake....
He has been stable all day.
Sodium was low and has increased to 125... still low but hey, it's heading back up instead of down.
His blood gases are darn near perfect. Not much machine support and his oxygen needs are lowering.
He did NOT gain any weight!! Thank you for peeing!!!!
Unfortunately, his blood culture still came back positive. The first culture (when they found out he has staph) took about 11 hours to show, the second took 12 hours to show and this one took 18 hours to show. The fact that it took longer shows a "lesser active infection." BUT... by now, it really should have come back negative (that's the bad news). It's not terrible, per say, as they can continue to treat... More to come in the morning but he is still "OK" at this time.
Sleep well... Ethan is.
Not sure what happened last night... His oxygen needs suddenly went back to 100%. They reintubated him since last time there was a mucus plug... Hoping to find one... There wasn't.
The nurse is more concerned than he was on Monday when this really took off. Not comforting.
They are ordering blood work, an echo and brain ultrasound and then we'll discuss further once we have those results.
We still don't know exactly what happened or is happening.
His sodium is still up (130 right now).... his platelets are still low (compared to normal) but stable.
His echo came back normal... no evidence of any bacteria within the heart.
His blood pressure is still normal and they actually stopped the epinephrine since he was maintaining it well enough.
This morning his oxygen saturation dropped and they ended up having to increase to 100% oxygen. They reintubated and his needs got a little lower which was good... they took an x-ray but noticed the tube wasn't all the way in... so they had to reintubate again at 920AM. Since then, they have decreased his oxygen levels back down to the 60s.
The brain scan is coming around 1PM... radiology is really backed up so hopefully sooner than later... the few hours won't hurt... just the anxiety of knowing more than anything.
I wish I could give a better update but again.... we just don't know. No one really knows at this moment.
Ethan is stable... They've added a couple more antibiotics to the arsenal that should almost certainly knock the staph out. Yes, hindsight says they should've done that from the get go but typically the initial meds should have been enough... No concerns there, even in hindsight.
His brain scan did come back with a grade 3 hemorrhage. Nothing to really do about it. There was also some fluid building up and what could also be part of the infection present. This fluid could put pressure on the brain but there is some flexibility to expand since his head is still soft. They'll check in a few days and also bring in the neurosurgeon to assess based on that scan vs today's. However, the fluid is not as concerning... The grade 3 hemorrhage is the concern as you don't know the impact. Typically the results are developmental and/or motor issues... And even then it could be minor to severe. We've read stories where babies had grade 3 and grade 4 with no long-term issues... Odds are of course that there would be issues. I suppose at this point all we can do is pray he continues to beat the odds.
We're still unsure what happened with his oxygen last night... Maybe some fluid built up and then got blown outta there with the increased machine settings and the reintubate. Who knows. He's about back to where he was.......
Those are the main points. Hopefully no more updates today.
Thank you for your continued prayers and support.
It appears some of you have been spoiled with early morning updates. :-p
Well hopefully it brings you some joy to know that this is a late update because Prudence and I slept in until 8. No early morning call from the nurse/doctor. We ate a proper breakfast. I got a haircut. We picked up some necessities from the store... and we didn't get to the hospital until 1PM. Yes, I did call the nurse this morning to confirm things were still stable, of course.
Ethan had a great night. His blood gases are great... basically perfect. He is currently on 23% oxygen (remember, room air is 21%) so very minimal needs.
His blood pressure and heart rate are perfect. He is resting and no dips or raises in either.
His blood sugar is pretty good too. It was 134 earlier. They were having some issues with it being too low (<30) but were able to get that back up and going.
His sodium levels are back up... they were down to a critical 119 but have sense jumped back to 132 as of this morning. Firstly, sodium is not something you can give quickly otherwise you can damage brain cells. They've been taking a slow approach and appears to be helping The double edged sword is that we need him to pee more and lose weight (discussed further below) but we needed him to increase his sodium... which retains fluids. As I have said many times, it's one heck of a balancing act when it comes to any fluids they give him.
His urine output isn't the greatest... they want more considering the amount of fluids he is taking in and the fact that he gained another 3 ounces since yesterday. Last week, Saturday, he was 1 pound 2 ounces. He has since gained 12 ounces. There is slight concern from respiratory that since he's been retaining so much, this can put unnecessary pressure on his lungs and therefore a bit more machine to keep them expanded. That's a concern.. not really a problem, yet.
As mentioned yesterday, the brain scan did find a grade 3 hemorrhage on his left side. No active bleeding but shows it happened. Most likely earlier in the week with his low blood pressure. The real unfortunate part of that is we just do not know the impact. As of right now, he has very little movement. He has wiggled his left wrist and does show an ability to move his tongue and swallow (or attempt to)... it's not much but something. The doctors are very concerned about it since he did have the grade 3 bleed. If he didn't have the bleed, they would maybe chalk it up to his condition. We have read stories where grade 3 and grade 4 were "nothing" when it came to mental/motor issues and other times where they are in a permanent vegetative state. You just don't know. Personally, at this moment, I am pretty defensive when they talk about his inactivity since he is so sick. He's not fully developed, doesn't have a lot of muscle, has staph infection, full on sepsis, gained 67% of his weight, getting 3 antibiotics, and is stressed. So.... I am banking on all that. This kid has had all kinds of odds against him since the time he actually made it out of the delivery room still alive. We pray and hope that he can continue to defy all odds. There is a chance for more bleeding since his brain ventricles are enlarged (due to the infection, meds, etc) and could create more bleeding. At this point, the infection must go to help reduce any further risk of more damage.
All we can do is pray and hope at the moment. The sooner his infection gets cleared up, the sooner we would expect an increased urine output, ventricles go back to normal size, and we can do a further assessment. We would expect that to take about a week or so until we can really assess any potential damage. Even if he shows his old self and tons of movement, again, we won't know about other delays until we really get him home. But at least his old self, slapping hands away during diaper changes, would be a freaking fantastic response no more than 7 days from now... and the chances of something major and long term would be dramatically reduced.
We are keeping the "brain stuff" in the back of our mind. It's a terrible reality. Finding that out yesterday was.... ???.... (I don't know. I literally sat here for 2 mins and couldn't complete the sentence. That's what yesterday was). Either way, the focus is the infection. That sucker needs to be gone. No matter anything else (brain, PDA, respiratory, etc). Number 1 is the infection. Once that is gone we can address other items and go forward. For example, they talked about a potential surgery to close the PDA but "who cares" at this point since focus is the infection. Putting him on the CPAP, forget about it for now... focus on the infection. Get the idea? ;-)
The fact that he is peeing, somewhat, Respiratory is fantastic, etc just shows that he has not given up. He has not shut down... literally.
It is simply amazing that this baby, born at 23 weeks and 1 day, is still here on "Day 20." He continues to defy odds and impress everyone here (online, family and the hospital). Yes, it may sound callus, and frankly maybe rightfully so (from a professional perspective), but even the staff (remain unnamed) has shown a connection for him. Something about this boy has really brought them in... As they say and I say, it's his relentlessness and fight.
We all need to continue the prayers and fight for him. There is only so much the medicine can do and I think that's why he is still here. The fight and determination of not only Ethan but of his support group. Prudence and I continue to receive personal messages from people that are 3-4 degrees away but heard his story and shared their own respective success story. We know it is possible. I know you are all here following and praying for him. I'll probably be scolded for this but I wish there was something we could give you in return. Each day I thank you for the prayers... the support.. the gift cards... the hugs... the bonfire shirt account... the gofundme account.. the care packages... We wish that we could do more than just a "thank you" on here. Just please know how grateful we are for all that folks have done. Prudence and I are typically the volunteers and giving back so it's been different being on the other end. It's all so much appreciated and again, we're not used to this so that's probably why I am rambling.... just...... Thank you.
Ethan continued to have a good night. After we said our evening prayer with him, we got some hands on time.... Mommy kisses.
We have church in the morning... So expect an afternoon update.