Sunday, July 31, 2016

July 31, 2016

Zeke is 16 weeks old today, and his weight overnight was 3880g (8lb 9oz). He's had a really good last part of the week. He's been here in Birmingham for 108 days now, in addition to the 4 he was in Pensacola. He's busted through so many barriers, and has made it farther than anyone really expected him to.
They started breastmilk feeds on Thursday. He started out at 5ml every 3 hours. Friday they increased that to 10, and Saturday, they decided to increase by 5ml every 12 hours. Right now he's up to 25ml, and seems to be tolerating it well. He's having a decent amount of urine and stool output, and seems to enjoy having something in his belly.
If you didn't see the picture I posted on Friday, they decided to extubate him! His blood gasses were really good, and have been consistently for a few weeks now, and he was really as low as he could go on his vent settings. He's on nasal cannula cpap, and doing very well on it. He's getting 20 puffs per minute, and the pressure is low as well (17/5). He's pretty consistently been getting between 26-30% Oxygen, and he's keeping his sats up and his gasses have been good.
The new line is working out well. Other than having a few positioning issues, and the occasional high pressure in the lines, there have been no issues with bleeding or anything else at this point.
They came in to change his dialysis pump yesterday (Saturday). Dr Askenazi came in - it's the first I've seen him in a few months. He seemed very happy with the progress that Zeke has made, and is excited to get him moving on to other things.
** Just to explain the dialysis pump a little bit, there is quite a bit of tubing going from Zeke, to the pump, through the pump, and back to him. This tubing is filled (primed) before they start the dialysis with either donor blood or the blood from the tubing from the machine he's switching from, if the baby is under 4 kilos, or if the baby is bigger, they can do a saline prime. It's all dependent on the percentage of the total blood volume that's in the tubing. Lots of math that I don't really understand and can't explain. Anyway, they've always had to do a blood prime. Dr. A is hoping that in the next week or two, they'll be able to start using saline to prime, rather than blood, which is better for a few different reasons.
Every time Zeke is exposed to donor blood, he's exposed to the different proteins, etc... in that blood. The more transfusions/blood primes he receives, the chance of donor kidney rejection increases. Another medical thing I don't entirely understand, but the risk is there. So not needing to blood prime the pump every time will be a huge help for him.
Also, right now, the way they do the pump change, in order to try to keep him from needing new donor blood every time, is taking the blood from the tubing on the 'old' pump, and feeding it into the tubing for the 'new' pump. Blood clots easily and quickly, even with the heparin he's receiving to help the dialysis, and it has to be a fairly quick change to make sure the blood doesn't clot before it starts flowing in the new pump.
When they can start saline primes, they won't have to worry about the blood clotting, and Zeke will be able to be off the pump on change days (every 3 days). This will give him a chance to have PT/OT come in and work with him to try to get his strength up, give him time to get out of his bed in the same position (because the lines are pretty picky, and like him to be in literally two positions - on his back with his head more to the left, or on his left side... causing the left side of his head to be extremely flat, and the muscles on the left side of his neck to be really tight), and will give us more opportunities to hold him.
They also talked with neonatal and renal yesterday during rounds about letting us hold him more, even hooked up to the pump, as long as it still flows and he doesn't have any issues. They both agreed that it would be beneficial to him to be held, and everyone's ok with it, as long as it doesn't cause issues with the dialysis or the lines.
We're really excited about him potentially being able to start working with pt/ot. Hopefully they can help fix his head without a helmet (although, I very strongly doubt that...)
We're so thankful for the prayers and kind thoughts from all of our family, friends, the amazing command at Gary's work, and our other supporters. And the staff here at Children's has been amazing. We absolutely LOVE the nurses, practitioners, and doctors here! They've made this whole ordeal so much more tolerable. We love you all!

July 29
3940g (8lb 11oz)

July 29

July 31

July 31
3880g (8lb 9oz) 
July 31

July 31

Thursday, July 28, 2016

July 28, 2016

A quick update for the week.
Zeke has been doing ok. He's had some blood pressure issues - pretty low one day, high the next. His pump has been flowing mostly without issue, and they've been able to keep it going.
His weight has been up and down, but has been pretty steady between 3.7-3.9kilos (8lb 2oz - 8lb 10oz) in the past week.
They tried to do a hearing test on Monday, and he freaked out before they got all of the equipment hooked up, so they decided to wait on that. He also had to get some blood and a saline bolus on Monday because his hematocrit and blood pressure were both low.
They did an echo on Wednesday morning, and everything looked good.
Zeke has been having a ton of issues with the other line in his neck, bleeding, coming dislodged and pulling out, etc... They were finally able to locate a line that is tunneled (goes under the skin) and cuffed (has a ring on it so it doesn't become dislodged). They had a few meetings about the best line to use, and finally decided on one. They took him down to surgery Wednesday afternoon (7/27) to place the new line. It goes into the same vessel the other vascath did (in the right side of his neck). It enters the vessel just above the collar bone, and goes under the skin to the left side of his chest. It comes out there, and is stitched to the right side of his chest. They're hoping that this line will cause fewer problems with bleeding and needing to be replaced so often. This line isn't one that's typically used for dialysis. It's longer than the other one, and smaller in diameter. Both of these things contribute to higher pressure in the line to reach the same amount of blood flow, which is causing some issues with the pump - especially when Zeke gets upset and starts crying - this increases his blood pressure, which makes the pressure in the lines go crazy as well.
Since the anesthesia meds wore off yesterday evening, Zeke's been more agitated off and on, and has needed quite a few doses of fentanyl throughout last night and today. Hopefully they'll get his pain under control and he'll be able to rest without so many meds. For some reason, he shakes a lot when he gets the extra meds - almost like withdrawal, but it's when he gets more, not less that I notice it more.
The vent settings have stayed extremely low. He's on a rate of 20, and the pressure is 16/5. He's been on 21% (room air) to 30% Oxygen all week. The hope is to extubate in the next few days and see how he does.
They also started breastmilk feeds today. Right now he's getting 5ml every 3 hours. As he tolerates it, they'll increase the amount.
I did get to hold him yesterday for a while before his surgery, and it was amazing, as usual. I didn't even get mad that surgery was way behind - it just meant that I got to snuggle him for longer!
All in all, things are improving slowly. We're praying that his line is successful and works well, and that he can calm down and feel some peace and be able to rest well and recover from surgery soon. He's an amazing little fighter, and we're so thankful that he's part of our family.

July 24
3750g (8lb 4.25oz)

July 26
3930g (8lb 10.6oz)
July 27
3790g (8lb 5.7oz)

July 27

July 27

July 27

Sunday, July 24, 2016

July 24, 2016

Zeke has done really well this week other than the vascath issues on Wednesday and Thursday. He had been somewhat agitated so the docs went back up on his fentanyl and versed drips to keep him more calm. He still has some angry spells, but he usually calms down pretty well so the additional sedation has helped. The biggest concern is that he'll get aggravated and pull his vascath loose, which is what happened on Thursday.
Surgery and nephrology have been getting together to identify a way to prevent all of the bleeds he's been having. Nephrology wants to try out a new catheter that's stiffer and more permanent. Right now the plan is to have surgery place the new catheter on Wednesday during pump change.
He has done exceptionally well on his ventilator settings. He's currently at a pressure of 18/5, rate of 20, and 21% O2 (room air). They don't really have much they can reduce without extubating him. Right now they want to wait until after the surgery on Wednesday since he has to be intubated for that anyways. They will probably wait to extubate him until the next week since they don't like making major changes going into the weekend.
The docs started him on hydrocortisone a couple days ago to try and get his BP under better control. They've been able to wean him completely off the dopamine, but his BP has been trending downward since they turned it off. We'll just have to wait and see how that plays out.

July 22
3850g (8lb 7.8oz) 
July 23
3880g (8lb 9oz)

July 24
3750g (8lb 4.25oz)

Thursday, July 21, 2016

July 21, 2016

We don't really post these pictures, but this is Zeke's reality. The vascath line in his neck bleeds fairly frequently and today was no exception. The line got pulled out partially and the nurses had a hard time getting the bleeding to stop. They got it stopped though and the surgeons came in and replaced the vascath. Zeke lost a good amount of blood and he's now getting 60 CCs transfused. They got him back on dialysis with no issue and he's stable and sleeping now.


Surgeons replacing Zeke's vascath (dialysis line)

July 21

The Aftermath



Tuesday, July 19, 2016

July 19, 2016

Ezekiel continued to have some issues with his vascath this last week, but the doctors finally got it resolved. Since then he had some pump issues and BP fluctuations, but he’s been fine otherwise.
Last Sunday (10JUL) he continued to have issues with his vascath. They ended up leaving him off the pump until monday morning. When they tried to put him back on dialysis, he started bleeding again. The docs decided to conduct a contrast study to see how everything was flowing through the vessel. Sometimes the blood vessels become inflamed and constricted after having the catheter in for a long time. Tuesday morning they performed the contrast study and there were no issues with his vessels. The catheter was not inserted deep enough into the vein and that was causing it to leak. The surgeons replaced the vasccath and since then there have been no issues with it.
Due to all the vascath issues, the doctors had to push back removing his malincot drains (it was supposed to happen on Monday). Since they got the vascath under control Tuesday, they let him rest Wednesday, and then removed his manlincot drains on Thursday. They came out with no issue and everything still appears to be moving through his bowels as it should.
Later in the day on Thursday the dialysis pump clotted up and they had to take him off overnight. He started having really low blood pressure after that (means in the 20s). This continued through Friday and the docs thought that the malincot removal may have stirred some stuff up in his gut. They took blood cultures and labs to see if he had an infection, but other than the CRP being slightly elevated, they didn’t find anything. He was already still on antibiotics from his last infection so they continued those and added vancomycin just to be safe. They ran the antibiotics through yesterday (18JUL) and then turned them off because they never found any additional signs of infection.
He’s continued to have BP issues through today. His means have been bouncing between 30 and 70. They’ve had to turn his dopamine back on and right now he’s up to 17 on it. He has done really good on his vent settings. They’ve been able to wean almost every day since putting him back on last week. Right now he’s down to pressure of 21/5, rate of 20, and 34% O2.
They conducted a head and abdomen ultrasound yesterday and they both came back with no changes. Urology came by to explain that he still only has about 4ml of urine in his bladder which isn’t enough to reinsert a catheter. Right now the little urine he is producing is draining through his mucus fistula into his colon. They plan on closing that off once surgery goes in to repair his bowels. I also spoke to surgery yesterday and they’re being more cautious with their timeline than we thought. They want to try to start feeds next week in order to give his bowels a little more time to recover after removing the malincot drains. Typically they close up ostomys after about 2 months (which is where we are right now), but since his bowels tore and were so fragile when they removed his UVC, they want to be more cautious and give him some extra time before they reenter his abdomen. Makes sense since if they go in too early, it’s only going to mess things up worse and delay the attempt at PD even longer.

July 11
3670g (8lb 1.5oz)

July 12
3850g (8lb 8oz)

July 13
3720g (8lb 3.25oz)


July 13

July 14
3620g (7lb 15.7oz)

July 15

July 15

July 15
3630g (8lbs)

July 17
3740g (8lb 4oz)

The nurses were having fun fighting over who was Zeke's favorite :)

July 18
3690g (8lb 2oz)

July 19
3910g (8lb 10oz)

Sunday, July 10, 2016

July 10, 2016

Ezekiel has had a pretty eventful week. Overall he's continued to improve, but he has had some setbacks.
A week ago yesterday he was extubated and he initially did really well off the ventilator. As time went by though, his O2 sat started getting lower and his blood gasses were getting slowly worse. Earlier in the week they had to turn the pressure and rate back up on his nasal prongs. Yesterday his blood gasses continued to get worse and he was at the highest settings he could be on. (his gasses were 719/77, so pretty bad) They ended up having to reintubate him yesterday and he's done a lot better since. He's currently pretty high on his rate and pressure (rate - 45, pressure - 23/5, and O2 - 30%)
His vascath did really well since they replaced it last week, but it also started having issues yesterday. It bled twice during the day, but they were able to get it stopped very easily. It finally started bleeding again around midnight last night. It wasn't very much, but they would get it stopped and then the clot would break off and start bleeding again. Surgery came up and he decided to just replace the vascath. It went in with no problems, but the dialysis pump clotted up while they were working on him and they couldn't get it running again. He ended up getting back on dialysis this morning and it's been running fine since.
He ended up getting restarted on his fentanyl and versed drips because the surgeon was concerned that his agitation and movement was causing the issues with the vascath. They want to preserve those as much as possible so they needed him to be a little more sedated.
Tomorrow he's scheduled to have his malincot drains removed from his abdomen. Hopefully we won't have any of the issues we had with the UVC where it adhered to surrounding tissue and damaged his intestines. I'm still waiting to hear from surgery if there are any additional procedures they're going to do tomorrow or if they're just doing the drains. From what I've heard so far, they're just going to remove the drains at his bedside so they might not do anything else yet. There's a whole laundry list of the things they want to do to him (vesicostomy or valve oblation on his bladder, inserting g-tube and PD catheter, etc)

July 3
3590g (7lb 14.6oz)

With the awesome personalized Fijian war club some friends sent

July 3

July 4
3480g (7lb 10.75oz)

July 5
3470g (7lb 10.4oz)

July 6
3020g (6lb 10.5oz)

July 7

July 7
3120g (6lb 14oz)

July 7

July 8
3150g (6lb 15oz)

July 10

Saturday, July 2, 2016

July 2, 2016 {part 2}

The tube is out, and he's doing great so far (even though it's only been a couple of hours)! His little voice is tiny and hoarse, but it's there. He sounds like a sad little cat. He seems like he likes it though. He keeps moving his tongue around his mouth. They've increased his vent settings a bit - he's getting 50% oxygen, and bumped his pressure up to 19/5, but he's satting mostly in the 90's, which is great. They said that the first hour is usually the most critical, when most babies will need to be reintubated, but he seems to be doing well. He's been pretty agitated and needed some fentanyl, but is doing ok. He's taken some big steps in the past couple of days, and we can't be prouder. We never though we'd get to this point, and we're beyond grateful for all of the support, and for all of the blessings we've received. We pray every day for his recovery and healing, and thank God for every day we have with him. Zeke is definitely a strong little warrior, and a huge blessing to our family.


July 2
Getting extubated!

July 2
The first time he could cry and actually make noise

July 2
Enjoying having the vent tube out of his mouth

July 2
He can actually suck on a pacifier



July 2, 2016 {part 1}

Zeke got his third dose of Decadron (steroid) about half an hour ago, and they weaned the pressure on his vent earlier this morning to 18/5. We're just waiting now for them to decide it's time. He'll still be on the vent with the same pressure, rate, and oxygen settings, but he'll have the nasal cannula instead of the et tube. If he's doing really well, they'll eventually wean him to cpap and then to just low-flow oxygen as needed. There's a chance he may need to be reintubated if he's having a hard time with the nasal cannula, but we're praying that he does well. This is a huge step, and we're really excited, but extremely nervous.


July 2
3660g (8lb 1oz)

Friday, July 1, 2016

July 1, 2016

The rest of this week has been up and down. Zeke gained 650g (1lb 7oz) in the span of 48 hours, due to all of the fluids he'd received - saline boluses, blood transfusions, albumen, platelets, etc...
The blood cultures came back positive for a gram-negative bacteria called Acinetobacter. Once they found the type of bacteria, they were able to start him on antibiotics specific for that infection.
His blood pressure got pretty high again on Monday, so they started weaning the dopamine Monday evening, and were able to get him completely off the dopamine by Tuesday. He's been on and off of it the rest of the week, depending on what he needs to keep his blood pressure good.
The pressure in his dialysis lines got really high Monday afternoon and the pump wouldn't run. They put tpa in his lines for about 45 minutes to try to clear them, and tried to flush the lines. They didn't want to flush. They put more tpa in for two hours and tried to flush again, and it was still more sluggish than they wanted, so they decided to leave the tpa in overnight and hook him back up this morning. They didn't have any issues getting him on the new pump Tuesday morning, which is good. Today was another pump change day. They were able to get him on the new pump with few issues, but, as usual, his lines are extremely positional, and he's had to have them flushed a few times today (and several times over the week). Due to good blood pressure most of the week, they've been able to remove a good amount of fluid, and he's lost quite a bit of weight (he was at 3560g today, down from 3920 on Tuesday).
The incisions on his abdomen were extremely red and inflamed, as well as a large portion of his abdomen, so they ordered an abdominal ultrasound on Monday afternoon. Urology came in that afternoon, after reviewing the ultrasound. They don't really have a plan other than wait and see at this point. They couldn't place a new superpubic catheter due to the lack of fluid in his bladder (he said the ultrasound showed maybe 2ml), and he was obviously not stable enough for surgery with an infection. Since his bladder was empty, they're just going to do weekly ultrasounds to watch for fluid in his bladder, see if it's becoming distended, etc... Since then, he has had a small amount of urine drain from his mucus fistula, but nowhere near the amount of urine he had been producing. The ultrasound also showed some dilated bowel, but there was no extra free fluid in his abdomen, no abscess, etc...
They started weaning his Versed (sedation/anxiety med) on Tuesday, and weaned his Fentanyl down some today.
A few times on Wednesday, Zeke was pretty agitated, but as soon as I opened the top on his bed, he calmed down. We left his bed open, to see how he'd do with just the radiant warmer, and he did fine. So today, he got to move to a new bed! No more plastic box for him!
This morning was pretty eventful. Zeke had the dressing on his PICC line changed, he had pump change, got the new bed, had a head ultrasound, and just had a lot of people in and out of his room. He got really agitated, and we were having a hard time calming him, even after a dose of Fentanyl. We requested an abdominal xray, because he was arching his back and seemed extremely uncomfortable. We re-positioned him so he was completely on his left side, and he seemed a lot more comfortable. Everything looked ok on the xray. There is still stool backed up in his intestines above his colostomy, but they're hoping that by weaning his Fentanyl and continuing with the Mucomyst, things will start moving and he'll be less uncomfortable. We're going to try to talk to surgery and see if there's anything else we can do to try to loosen up the contents of his intestines to make things move more easily.
They're also trying to extubate him tomorrow! They've started him on a steroid to help alleviate the swelling in his throat caused by the tube, and they're trying to wean his vent settings a bit tonight, and after he gets his third dose of steroids, they're going to try to extubate, as long as he's doing well. They tried to wean his vent pressure this morning, but he kind of freaked out after everything that was going on, and they bumped it back up. He's currently at a rate of 20, and his pressure is 22/5.