Sunday, June 26, 2016

June 26, 2016

Zeke has had a rough day. He's been doing awesome, and they were seriously talking about extubating him, but he kind of crashed last night.
For the past couple of days, he'd been doing fairly well, and he was down considerably on his vent settings. He was down to a pressure of 18/5, and a rate of 20. He'd had very few issues with his vent or the dialysis pump, and things seemed to be ok. His blood gasses were ok but not great, but not enough to up his vent settings. He was on a low dose of Fentanyl, but hadn't required many PRN doses. He'd been awake and alert, and we all felt confident that he was good.
Last night around 11pm as I was leaving, his blood pressure was fairly low (low 30's - they want it to be 40's-50's). We'd just given him his bath, changed his bedding, and had been messing with him for a while, so the nurse said she'd keep an eye on it and call me with any issues.
I woke up to a voicemail (I didn't hear my phone) from around 1am. His bp had stayed really low, and had gotten worse (low 20's), so they put him back on the max dose of Dopamine (20mcg/kg/hr) and given several saline boluses and doses of albumen and platelets to try to get his bp back up. It's stayed low pretty consistently throughout the day. They just decided to leave 10 on with dialysis this hour, and go to leaving 5 on an hour after that, and see if it helps. They're trying to avoid putting him on more bp meds.
Last night they also sent blood cultures to check for infection. One came back positive, so they repeated it again this afternoon to rule out error. They put him on more antibiotics (he's on vancomycin, ampicillin, tobramycin, and cephalosporin) to catch whatever infection he has.
Surgery came in early this morning and tried to flush the drains in his small intestine, and neither would flush. His abdomen feels a lot harder than it did last night. He also hasn't had really any measurable urine out of his mucus fistula in almost two days, which is concerning. Urology hasn't come by today, which is frustrating.
They did do an xray this morning, and it showed some dilation in the bowels, but it didn't look like there was any extra fluid or anything in his abdomen. They haven't done an ultrasound to verify, though, because I guess they're waiting for urology? They need to figure out what they're going to do about either placing a new superpubic catheter, or doing something to drain his bladder.
I was really apprehensive about them stopping his antibiotics last week, and asked if they could keep him on a mild one as a precaution, since he has the drains and everything else, but they said it wasn't necessary.
I'm so incredibly frustrated right now. I feel like because it's the weekend, things aren't being treated as urgently. It may just be me being a nervous mom, but I want to scream. It's so hard to go from doing so well to going back to this, literally overnight.

Thursday, June 23, 2016

June 23, 2016

We got the results of Zeke's VCUG yesterday. His bladder is refluxing up into his kidneys (vesicoureteral reflux). They expected this, and because he's on dialysis and his kidneys aren't very functional anyway (he's making urine, but not filtering toxins), it's not a huge deal. They also confirmed that there was a fistula, or connection, between his bladder and the lower portion of his large intestine, and it's coming out through the mucus fistula. The test also showed that there was no urine flow through the lower part of his urethra, which we already knew, since they haven't been able to insert a regular foley catheter. The urologist said that when general surgery went in to reattach Zeke's intestines, he'd be there at the same time. He plans to try to open whatever blockage is in the urethra and insert a foley catheter at that time. If that's not successful, he'll likely perform a vesicostomy (similar to a colostomy, only it's an opening from the bladder to the skin, instead of the bowel). He will also go in and close the opening in the bladder and seal it off from the bowel. We're still not sure when they plan to do any of these procedures. At some point in the night, he lost his superpubic catheter, so we're not really sure what the plan is. The urologist tried to reinsert it shortly -after they realized it came out with no success. He also tried to insert a foley catheter this morning, but that also didn't work. They're ok with just letting his bladder drain through his mucus fistula into the bag for now, until they figure out what to do next.
He's still having a larger than normal amount of secretions in his tube, and is needing suction often. Not as much today as yesterday, but still more than they'd like. His blood gasses haven't been amazing, so they're not weaning his rate on the vent or trying to extubate until he's more stable. He's still at a rate of 30rpm, with pressure at 20/5 and his Oxygen support is between 25-30%. Because of the increase in secretions, they sent a sample to be tested for respiratory viruses on Tuesday afternoon. The results they got back yesterday were negative, which is good. They started him on a low dose of Ampicillin to be on the safe side.
He had a rough night last night. They were able to get him back on the dialysis pump with no issues yesterday afternoon, but on night shift they were having a lot of issues trying to get the lines to flow. They had to disconnect him several times to flush or tpa the lines, and the machine ended up clotting. They had to take him off for the rest of the night, and restarted the machine with new blood early this afternoon. It was running fine at first, but this evening it started having issues with the line pressure again. His dialysis catheter/lines are extremely touchy and positional, and it's been pretty frustrating for his nurses to try to keep them in a good place to keep the machine running.
He's still doing well off the dopamine. His blood pressures have been pretty high - means occasionally as low as 50's, but usually between 60's-90's. His pump is set to I=O.
He was extremely agitated last night, even after several doses of Fentanyl (and they increased his dose as well). They started him back on a low dose (1mcg) of Fentanyl in his IV today to try to give him some relief. It has helped some, but he's also needed prn doses as well.
He's having less secretions today, and hasn't needed to be suctioned nearly as much as the last few days. With all of the issues he's had with the pump, as well as being out on a 'field trip' yesterday for his VCUG, being poked with the catheter, and needing lots of suction, we're not pushing for extubation at this point. We'd rather wait until he's more stable and has a better chance of staying extubated.
We've had a rough couple of days, but he's still doing well.

Tuesday, June 21, 2016

June 21, 2016

Zeke is doing pretty well lately. We've had a few ups and downs in the past few days, but nothing extreme.
His weight has fluctuated quite a bit, but he's still looking really good. It just depends on the amount of fluid that's pulled off or left on. Yesterday he was 3090g (6lb 13oz), today he's 3300g (7lb 4oz). His last length measurement, he was 49cm (19.3in), and at birth he was 40cm (15.7in).
He was completely weaned off his Fentanyl drip on 6/4, and moved to Methadone. His last dose of Methadone was this past Thursday (6/16). He's still receiving small doses of Fentanyl prn (as needed), and he's still on a small amount of Versed in his IV. Since coming off the Methadone, he's been so much more awake and alert. He hasn't needed a ton of Fentanyl, only when he's been seriously agitated, or before a procedure. He's been awake for an hour or more at a time a few times a day, and has been looking around. He seems pretty annoyed that he can't move his head because of the vent tube, but he tries really hard to look around.
He's been pretty stable from a respiratory standpoint. The past couple of days he's had a LOT of secretions in his tube and a lot of drool, causing him to need to be suctioned a lot. His blood gasses haven't been great, and because he's needed suction so much, they've gone up slightly on his rate (he's at 30rpm) and pressure (he's at 20/5), but his oxygen requirement has stayed under 30%. Because of the large increase in respiratory secretions, they've decided to send some of the mucus/saliva to be tested for a viral respiratory infection. They're just doing this as a precaution, because the secretions have been clear, but they want to make sure there's nothing serious causing it.
Surgery and Nephrology spent the last part of last week and the weekend calling their supplier, manufacturer, and other children's hospitals, trying to find a permanent, subcutaneous/cuffed dialysis catheter. When they replaced Zeke's vascath on the 10th, they wanted to replace it with the cuffed catheter, but it was too long for his body. These are placed with the access in the chest, then tunnel under the skin up to the neck, where they insert into the vein in the same place the vascath is inserted. The smallest ones they currently have are 18 inches long, and that would put the access point near his colostomy, which is obviously less than ideal. They placed the vascath, in hopes they could find a smaller cuffed catheter. They told us on Sunday that there isn't a smaller version that's been approved in the US. There is one available in Europe, but it's not approved for use here. So we just have to wait for him to grow enough for the ones available here to fit him.
Sunday was pump change day. That morning, surgery came in and checked the stitches on the vascath to make sure it was secure before they changed the pump. While they were here, the pump clotted, and they had to get new blood and other meds to prime the new pump, instead of being able to just use the blood that's in the old pump and transferring it to the new pump. They've kept him at -5 (leaving 5 on) on the pump, because his vitals have been stable.
Over the weekend, he started having a liquid discharge out of his mucus fistula (the place where the lower part of his intestines are sewn to his abdominal skin). This coincided with a huge decrease in the amount of urine that was coming out of his catheter. They tested the fluid, and decided it was likely urine. They said that because the bladder and intestines are right next to each other, it may have created a fistula, or a connection, from the bladder to the part of intestine that drains from the mucus fistula. Right now, they're just keeping it covered with gauze, and changing the gauze every couple of hours. Urology came in and flushed the catheter, because the few times we've had no urine output, there's been an issue with the catheter. It flushed fine. They ordered a VCUG (voiding cystourethrogram), which is a test where they insert a dye into the bladder and do xrays to look at where the dye/urine is going, and look at the anatomy of the urinary tract. They're going to do it tomorrow (Wednesday), since it's pump change day anyway, and they can just do the test while he's off dialysis, meaning there's one less piece of equipment for them to have to take down to radiology.
On Sunday, they decided that the plan was to extubate on Monday and see how he did on just CPAP. They decided to wait until after his VCUG to extubate, because they have to take him to another floor for it, and they don't want to have to do an emergency intubation if something happens while he's there. So the plan, as of now, is to extubate sometime tomorrow and see how he does on CPAP.
Last night, we noticed a puffy area on his abdomen between his mucus fistula and catheter. They're thinking it may just be a pocket of fluid or something. They did a chest/abdominal xray last night, and nothing looked super abnormal, so we're hoping to get some answers from the VCUG tomorrow.
All in all, he's doing well. Much better than we'd expected. Prayers work.

Monday, June 20, 2016

June 20, 2016

Little dude's scabby fingertip on his ring finger fell off tonight. It actually looks so much better than we were expecting it to! It's a little stubby, but he still has a fingernail!


Friday, June 17, 2016

June 17, 2016

Ezekiel has continued to do very well since the last update. He hasn't had any major issues. On Wednesday the 15th he was having a lot of Brady's. After talking with the nurses, they did an x-ray and saw that his vent tube was tube and was causing irritation. After they backed it out a little bit, he did a lot better.
His ventilator settings continue to be really low and we're still hoping for him to be extubated soon. He's now at a pressure of 19/5, rate of 20, and 28% O2. He did have some bleeding (very minimal) out of his vascath yesterday so they're still hesitant to take his vent tube out.
On the 15th he also had his pinrose drain come out of his abdomen and surgery had to come up and put it back in. They're still happy with his progress and they don't have any concerns about his abdomen. Surgery wants to get a more permanent catheter placed so they're in the process of contacting their distributor as well as other hospitals to see if anyone has one small enough for him. They tried to place a cuffed catheter last time he went in for surgery, but it was too long.
His fingers are looking a lot better. His ring finger is still black and hard on the very end, but it looks like his skin and fingernail are growing back underneath. It'll probably fall off, but it doesn't look like it will be that bad. All things considered, it's not a huge deal.

Saturday, June 11, 2016

Saturday, June 11

I realize it's been over a week since our last real update. Gary was here for several days, and I got here and realized the laptop was at home. Quick updates on my phone are one thing, but the more detailed ones call for an actual keyboard.
Zeke is doing well.
Last Saturday (6/4), he weaned completely off the fentanyl, and had transitioned to methadone to prevent withdrawal, since he'd been on the fentanyl since birth. He's been doing well on the methadone since. They've weaned his dose down on Monday and Thursday, and will go down to one dose a day on Monday.
They had started talking on Sunday about trying to extubate this week (remove the breathing tube to take him off the ventilator), but they wanted to wean him off the Nitric Oxide first, and give the vascath more time to heal and have it not bleed for more days before they did that. The Nitric was at 5ppm on Monday (down from 10 on Saturday), and they started weaning it down by 1ppm/day on Monday. He was able to come completely off of it around 1pm yesterday (Friday 6/10).
They did an abdominal ultrasound Monday. The pocket of fluid in his abdomen was gone.
On Tuesday, they increased his dose of Hydrocortisone, to try to help wean back down to a 'renal dose' of dopamine. They also moved his dialysis back to I=O (they had been leaving 5 on before this).
Wednesday was a non-eventful day. We just hung out. His O2 sats bounced around a lot throughout the day. In the evening, they retaped his ET tube, and found that it was pushed in too far. So they pulled it out to where it was supposed to be, and he's been satting better since. On Wednesday night, as I was getting ready for bed, they called and said that he'd started bleeding again. It wasn't a ton, and it stopped fairly quickly. They couldn't get the pump running again - he'd been off too long, and his lines and the pump lines had both started clotting. So they put tpa in his lines, and left him off the pump until morning, since he was due for a new pump Thursday anyway.
They got him on the new pump fine on Thursday morning. I headed back home for the day. We got a call in the late afternoon that he'd started bleeding again, and it was a lot this time. Surgery came in to look at the vascath, and saw that there was a leak in the catheter itself. They left him off dialysis, and scheduled him for surgery for Friday to replace it for a new one.
Friday, he turned two months old! Since he was off the dialysis pump and had to be moved to the transport bed anyway, they let me hold him until they came to take him down to the surgical floor. I really just held the mattress he was on, but he was on my lap, instead of a 'plastic box'.
Surgery went fine on Friday. They wanted to try to place a cuffed catheter, something more permanent, but it's a bigger line - wider and longer - and it was too big for him, so they ended up just replacing the vascath. When they put him back on the dialysis pump, it wasn't wanting to run. the pressure in the lines was really high, and they had to flush it a few times to get it to run. Because of the high pressure, when they flushed the line, he started to bleed a little bit, but it wasn't really anything, and has been fine since. The pump has alarmed a few times today with high pressures too. They did flush it, and got a clot out, but it seems to be positional, and as long as he's in a good position, the pump will run.
His art line (where they get his blood for labs, and also read his blood pressure) in his foot has also been acting up since surgery. It's positional as well, and when it stops reading, we just have to go in and move his foot, and it will start reading.
His vent settings were pretty much the same all week, until they took him down for surgery. He had been at a respiratory rate of 18 breaths/minute, and a pressure of 22/6 until Friday, when they went down to 21/6. When he came back from surgery on Friday, they had bumped his rate up to 30, because the meds they gave him for surgery will knock out the respiratory drive, and they wanted to make sure he was getting enough oxygen. He's still up to a rate of 25, but we're hoping to be able to wean that down soon. He's had good blood gasses today, and has been mostly breathing on his own. His O2 sats have been really good all day, except for 'that one time.'
His sats dropped a bit, and kept dropping, His blood pressure went up really high. He started turning blue, literally head to toe, and his sats kept dropping. I think he was in the 40's. They had to bag him, which is the first time this has happened while I've been here. He came back up fairly quickly, and has been fine since. I asked why he'd do that, and they said he just 'clamped down.' The nurse explained it as being similar in function to an asthma attack, where the lungs just won't open to get air. Sometimes that happens in babies who are on ventilators. He had been pretty upset right before - crying and thrashing around.
I've asked them about extubating, and because of that cute little spell he had earlier, it likely won't be this weekend. They want to make sure he'll be ok off the vent. If a baby does that, being on the vent makes it easier to get his lungs to open back up. They can bag him off the vent, but sometimes it won't work, and they'll have to do an emergency intubation. They want to make sure he's stable enough to be off the vent before they take hi off, just so they don't have to go back and reintubate, especially in an emergency situation. We're hoping for extubation mid-week, as long as everything keeps going well. He'll be on CPAP when he's extubated, which is done through a nasal cannula.
He's been up and down in his weight this week. He's gone from 3190g (7lb even), down to 3kg (6lb 9oz), and today is up to 3340g (7lb 5oz). He gained 250g overnight (almost 9oz), likely due to being off the pump for almost 24 hours.
We're just plugging away, slowly chipping away at the plastic in his body, and the issues that he's having. He's off the nitric... next step is getting off the vent.


June 4
3190g (7lb .5oz)



June 5
3070g (6lb 12oz)



June 6
3kg (6lb 9.8oz)





June 7
3140g (6lb 14.8oz)



June 8
3160g (6lb 15.5oz)






June 9
3220g (7lb 1.6oz)




June 10
3090g (6lb 13oz)






June 11
3340g (7lb 5.8oz)

Friday, June 3, 2016

June 3

Ezekiel has continued to make slow progress over the last few days. We've had some minor hiccups, but overall he's been doing well. He's currently on ventilator settings of: pressure 24/6, rate 20, and O2 of 43%.
Yesterday he continued to have his desat spells so the doctors wanted to try a couple things to try and fix those. They took a blood sample to test his BNP level which was 360. Normal range is closer to 100. BNP is an indicator of heart/lung issues and due to it being elevated they went back up on his nitric to 10 ppm. He seems to be having fewer and less severe desats since they did that. They also wanted to start weaning his fentanyl since he's been on it for almost 2 months now. In order to do that they've started to transition him to methadone to make the weaning easier. He got his first doses yesterday and he's done well with it.
This morning they took an echo of his heart and it looked good. They wanted to take a look at his heart and check how filled the vessels in the heart were. That drives whether he has the vascular fill to justify taking more fluid off. The renal doctor said that they were slightly overfilled so they can start being more aggressive with his dialysis. Since the pressure in his dialysis lines have gone up and he's had bleeding at the insertion site (happened again today) they also confirmed that there weren't any blood clots in his heart (which there weren't).
This morning after the echo around 0830, they had an issue with him bleeding from his vascath again. They got the bleeding to stop and redressed the site. This time they also placed surgiseal (essentially a cloth mesh) over the insertion site to promote clotting if he starts bleeding again. They left him off the dialysis pump and turned off his heparin to ensure that he wouldn't start bleeding again. They put him back on the dialysis pump at 1530 with no issue.
Through it all he's done really well, even with the multiple changes they've made the last two days. He's actually been more stable than he's been since probably last Saturday.


June 3
3200g (7lb .9oz)


Wednesday, June 1, 2016

June 1, 2016

Ezekiel has been making slow progress the couple days and has had a couple speed bumps, but nothing major. Overall, he's about the same as the last update. They have weaned down both the nitric (3 ppm) and the Dopamine (5 mcg) over the last few days and he's tolerated it really well.
Since Sunday he's been having significant desats on a fairly regular basis. He's bottomed out to 30% O2 saturation a couple times and the nurses have had to bag him. Respiratory has tweaked a few things, but yesterday they took an xray and this morning decided to push his vent tube farther in. Since they moved it deeper into his lungs, he has been pretty stable so hopefully that fixed the issue.
Yesterday his vascath started having issues and there was too much pressure on the dialysis line. They had to take the pump down around 0630 and put TPA in his lines to try to break up any blood clots there might be. Finally, around 1500, they put him back on the pump and it's worked fine ever since. Due to him being off dialysis for so long, he ended up gaining 110 grams (now at 3290 bodyweight). While he was down on the pump, the nurses also moved us to a new room right in front of the nurses station. The nurses were concerned because in the last room they couldn't hear the dialysis pump alarm if they weren't physically in the room.
Surgery came by to check on his abdomen and they say that it's looking good. They took an xray yesterday to ensure nothing was overly dilated or inflamed, but they said his bowels looked fine. They're just going to keep checking on him until he's healed enough for another exploratory laparotomy to see how they're going to repair his intestine (probably still 5-7 weeks away).
It's slow going right now, but every day that he's stable is a good day.

May 30
3210g (7lb 1oz)



June 1
3290g (7lb 4oz)