Our story of having a baby with posterior urethral valve syndrome.
A small part is the journal of the diagnosis and fetal surgery, and my time in the Perinatal Specialty Unit waiting for his arrival.
Mostly about his journey, his fight, and his strength in dealing with the struggles and hurdles his condition is throwing at him.
Ezekiel has been doing really well since his surgery on the 25th. Even with the added complications with his bowels, he has recovered surprisingly well. There haven’t been any major changes since then, so we’re just in wait and see mode. There was a minor issue with the dialysis pump yesterday so they had to change it out, but Zeke was fine through it all.
He’s continued to improve on all of his settings since the surgery. He’s weaned down on his Dopamine and is at the minimum dose of 5 (which is where the renal docs want him). We’re still waiting, but hopefully tomorrow he’ll continue to maintain his BP and they can start taking some fluid off. His ventilator settings have continued to come down and right now he’s on a pressure of 24/6, a rate of 25, and O2 concentration of 38. He’s been stuck right around 40% O2 for the last couple days. Every time they try and wean him by 2% on his O2, he starts bouncing all over the place so they’ve been going really slow. They just weaned him on his nitric so he’s now down to 10 ppm.
Of course, after I start writing this, he decides to act up. The nurse and I just noticed that he had blood around his head and it turns out that the vascath in his neck had started leaking blood. It ended up not being a huge deal as they were able to put some pressure on it and stop the bleeding. They ended up having surgery take a look at it to ensure the placement was still good and were able to just change the dressing on it and restart dialysis. They’ve continued to just keep an eye on it to ensure that it doesn’t happen again.
There is both good and bad news from the procedure today. Good news first. The surgeon placed the vascath in his neck without any issue, which was our biggest concern going into this. He should be good to go back onto dialysis at some point.
The bad news is that while they were removing the UVC, they found stool in his abdomen again. The surgeon proceeded to conduct an exploratory laporatomy to examine the abdomen and find out the origin. When they went into the abdomen, he said that he saw open bowel staring at him. Apparently his bowel had ruptured or torn during the procedure, most likely while the UVC was being removed. He attempted to reposition his bowels to examine the damage further, but his intestines were so unhealthy that they would tear as he tried to move them. The surgeon then tried to enter the abdomen from the incision where they conducted his last surgery, but the liver was stuck to the abdominal wall and blocked that access as well. Based off what he could see and the amount of damage any more exploration would cause, they decided to leave the bowel and place drains to ensure any further intestinal secretions are removed. They're leaving him off dialysis for the next 24 hours because running the machine requires Heparin, a blood thinner, and with the amount of damage to his abdomen they didn't want to start that back up until he'd recovered some.
There are numerous consequences from what happened today. Obviously he has some major trauma to his abdomen and large areas of unhealthy bowel which will effect his ability to recover. Long term, the surgeon said that his peritoneum was seriously damaged and that the likelihood of him ever being able to start peritoneal dialysis is very low. This means that he would have to remain in the hospital until he was able to receive a kidney transplant, sometime around his 2nd birthday.
Through all of this Ezekiel remained stable and didn't have any issues with the procedure. He waited to get back to the room for that. After he arrived back to his room in the NICU, he desatted and his oxygen saturation dropped to 19%. The nurses had to bag him to keep him stable. They found that his ventilator tube had pulled out and they had to reintubate him. Now that the nurses fixed that, he's been doing well. All of his stats are good and he's already come down a long ways on all of his vent settings (now at pressure of 29/6, respiratory rate of 32, and O2 concentration of 24%).
Back to the waiting game as we see how he recovers from the surgery and what our options are going to be to repair his damaged bowels. Typically the first 48-72 hours are the worst postop.
Over the last two days, Zeke has continued to do well. He only had a minor issue yesterday when he desatted and they had to bag him to bring his O2 back up. It seems the only time he has had that issue has been when he needs to get suctioned. They bagged him and suctioned him and he came back up fairly quickly. He continues to lose a little bit of weight each night, 150 grams over the last two days, putting him at 2930 grams.
They've continued to wean him on his ventilator settings. He's down to a pressure of 26/4 and a respiratory rate of 42. Even with his rate coming down he's only on 70% O2.
Last night when I arrived, the surgeons talked to me about replacing the dialysis catheter in his umbilical vein (UVC) with one in his neck. We've known that the UVC would go bad eventually and it was only a matter of time. Well, this morning when I came in at 0630, the nurse was working with the dialysis tech to restart his dialysis line. Apparently it had just stopped working, most likely from clotting forming on the end of the catheter. Now they have to replace the UVC as it's no longer viable. Makes it a little easier though since we had already been discussing it yesterday.
We're still waiting to hear from surgery on when they will be able to get him in today to place the Vascath in his neck, but it should be this afternoon. It's a fairly straightforward procedure that only takes about an hour, but there's the usual risks associated with any surgical procedure.
I'll post another update once he's out of surgery.
Zeke is down another 100g today, putting him at 3080g (6lb 13oz). He's 46cm (18.1in), and his abdominal circumference is down by 1cm (41.5cm). He's looking so much better - way less swollen, and you can actually see wrinkles on him now, instead of his skin stretched so tight across his whole body!
He's come down a tiny bit on the vent settings - the pressure is the same as it has been, but his rate is down to 56, and his O2 is currently down to 51%. He's regulating his temperature with the bed temp set a bit lower. His dialysis is still set to I=O for two hours, +5 for two, and he's tolerating it really well. His blood pressure is still holding steady, and he's back down to his maintenance dose of dopamine.
His team decided to increase his feeds today as well. He's receiving breastmilk feeds every 3 hours, and starting at 5pm, he'll be receiving 8ml per feed.
He's had several desats the last few days, where his oxygen saturation will drop to the mid-low 70's. He's had a lot of secretions building up in his chest and breathing tube, but as soon as the nurses come suction him through his tube, he comes right back up to the 90's.
His white blood cell count is at 13, which is fantastic!!!
Daddy comes back tomorrow, so hopefully Zeke doesn't start acting up for him!
Today was dialysis pump change day again. These days are usually fairly stressful, and today was no different. There was a different team than usual here today, and anything different increases my anxiety.
Zeke did great with the pump change though. They did increase his dopamine and put him back on the heating blanket, just as a preventative, but he sailed through it, despite some issues with air in the lines, and is coming back down to 5 on his dopamine.
His dialysis is now on a 4-hour cycle, pulling 5ml of fluid for two hours, I=O for two hours. He's tolerating it extremely well.
He had a weight loss of 90g again last night. Right now, he's at 3180g, which is 7lbs even. His dosing weight is still at 1.9kg (4lb 3oz), so he's still got quite a bit of extra fluid to lose, but he's making definite progress!
They decided to change his feeds again today. Instead of getting a continuous amount of breastmilk (1ml/hr), they're going back to 3ml at once, every 3 hours. They call this trophic feeds - non-nutritive feeds in small amounts, basically to stimulate the digestive tract. He's still getting all of the nutrition he needs via iv fluids, but the breastmilk will help give him extra antibodies and good stuff, plus, it will help get his digestion working well.
His vitals are still good, and he's had good blood gasses again today, and has been able to wean down on his vent some more. He's currently at a respiratory rate of 58, pressure at 26/4. He had a small desat a little while ago, so he's up to 67% Oxygen, but he's been down around 50% most of the day.
He's been a lot more alert today than he has been. When he's been awake, he seems more attentive. He just all around seems like he's feeling better today. He looks a lot better too, even just from two days ago.
Fluid change happens in about an hour, and he usually doesn't like that, but we're hoping he stays on the trend he has been and tolerates it well.
I came in this morning and was very pleasantly surprised at Zeke's numbers. He had an awesome night, and we're praying that he continues on this trend. He can, and likely, will have many more setbacks, but for now, he's a little rockstar.
He's down to the minimum renal dose of dopamine (5), also on a low dose of the hydrocortisone (which is also for bp), and his blood pressure is holding steady in the 40's-50's.
Renal decided to increase the fluid they're pulling, so he's at -5 for two hours, I=O for three hours. So far, he's tolerating the cycle.
His urine output was about the same (62cc), and he lost 90g overnight.
His blood gasses have been consistently good, so they're weaning down the vent settings some more. Currently, he's at a rate of 65rpm, pressure of 26, and he's down to 78% oxygen and keeping his sats in the 90's.
He's also doing so much better at controlling his own body temp as well. his bed is set at 32.7c (90.8F) and he's right at 37c (98.6F). This is a huge win, since a week ago, he was needing a heating blanket under him to keep his temp regulated.
Surgery agreed that he was doing well enough, so they decided to discontinue the mucamyst, and go straight to breastmilk feeds.
Praying for consistency, praying for healing, and so incredibly thankful for the small victories that add up to big ones.
Ezekiel has had a fairly good day. He seems to be fairly stable where he's at, enough so that this morning they felt like he may be able to tolerate some changes to his treatment.
His urine output yesterday over 24 hours was 61cc's, and he was holding steady at I=O on the dialysis. He had gained 30g, but his abdominal circumference stayed the same (42cm). He hadn't had any major saturation or blood pressure dips or anything overnight.
Blood pressures have been consistently in the 30's to 50's (unless he's mad, and then it's higher), and they were able to wean his dopamine down to 7 overnight.
During rounds this morning, nephrology wanted to try removing 5ml/hr with dialysis, pending neonatal's opinion on Zeke's status. When the neonatal team came in, they decided that his blood pressures and blood counts were stable enough, and they agreed with nephrology. I suggested starting slowly, taking 5 for an hour, and leaving him I=O for four, to make sure he would tolerate it. I don't want to go back to the cycle of taking too much off, so he needs a saline bolus, which causes his hematocrit to drop, causing him to then need a blood transfusion, a vicious cycle, adding all of this extra fluid that wasn't being pulled off. I'd rather start slowly and work our way up if he's tolerating it. They agreed, and that's the plan with dialysis for now. He's done well all day, with no noticeable change in his vitals during the hours when he's having extra fluid removed. Maybe tomorrow we can do 1-3.
I also asked about restarting breastmilk feeds, and they agreed that it could be beneficial, especially since he hasn't had any issues. They wanted to start with 3ml in the og tube every three hours and see how he does with that. They did one feed this morning around 11am, and he tolerated it well. But after talking to Gary and discussing it with the nurse and NP, since he's still on one of the meds prescribed by surgery to help with his colostomy, they need to talk to the surgeon who has been following Zeke, to make sure his digestion is ok and his colostomy is working well before doing any more. Surgery usually rounds early in the morning, so hopefully we'll have an answer either way when neonatal rounds tomorrow.
The swelling in his chest and extremities seems to be down, but his abdomen looked a bit more swollen in front this afternoon/evening, vs out to the sides. He had an abdominal ultrasound this afternoon, and it looked like there was about the same amount of 'free fluid' in his abdomen that was there during the last scan, so it's good that he's not accumulating more.
He has needed a few extra doses of Fentanyl, mostly around fluid change and when anyone's been touching him for long periods of time. He hasn't needed a saline bolus since Tuesday 5/17, and hasn't needed a transfusion since Mondday 5/16. The Epogen (erythropoietin) seems to be working to help him make his own red blood cells, so his hematocrit is staying stable without needing extra blood products, despite the dialysis.
His vent settings are down, due to having good blood gasses all day. He's down to a rate of 70rpm, with the same pressure settings (27/4). He's been up and down on his oxygen intake today - mostly between 95-100% - but right now he's getting 97% and satting in the mid-high 90's. I wouldn't be surprised if he's been weaned down more when I come back in the morning.
All in all, he's had a good day. We're praying for more days like this.
Zeke's left lung collapsed yesterday around 8:30pm, shortly after my last update. They adjusted his positioning, which was really all they could due because he was already on 100% oxygen. They did a repeat chest xray this morning and it was still collapsed, but his oxygen saturation has been better today.
Today has been a bit better all around. It was pump change day, which is always stressful, especially after the episode he had on Monday. They increased his dopamine and oxygen in preparation, and had respiratory and renal standing by in case something went wrong again. Luckily, he did great. There was no drop in his blood pressure or oxygen saturation (other than his O2 dropping from being touched, but that's normal - he doesn't like people messing with him). They had also turned his heating blanket back on before pump change, because if the blood hasn't been in the warming tube before it goes back into his body, it makes his temp drop. After about an hour, they had to turn off the blanket and open the little porthole windows of his isolette because he was too warm.
His stats have been decent today as well. He's satting in the high 80's to high 90's, and his blood gasses have been good today as well. Because of this, they've been able to wean him down a bit on his oxygen and vent settings. He's currently receiving 95% oxygen, and his rate is at 74, down from 100% and 80 this morning.
His blood pressures have been good today (in the 40's-50's), even with the dialysis at I=O, so they've been able to wean down on his dopamine as well (currently at 12 - his max is 20).
His white blood cell count is down to 18, so they discontinued one of his antibiotics today, and will discontinue one of the antifungals tomorrow, so he'll be down to 3.
His urine output from yesterday was 62cc's, which is still awesome, and he lost 20g.
We're hoping he continues trending upwards, keeps losing weight, and the umbilical lines keep working well.
As of this morning, Zeke has had tiny improvements, as well as some setbacks.
His weight went up 70g last night, and he's at the highest weight he's ever been (3350g, or 7lbs 6oz). That excess weight is fluid that we're trying to get rid of.
His blood gasses today have been the best they've been since he's been here, so they're slowly trying to wean down on the vent settings. He's still at a pretty high rate and a fairly high pressure, and right now getting 100% oxygen, but the blood numbers are good.
His fluid nutrition was changed last night. They changed his lipids from 24 hours to 12 hours. They increased his protein to the max allowable for his weight, and decreased his sodium.
His urine output yesterday was almost double what it's been (it was 71cc, which is on the extremely low end of what would be considered normal.
He hasn't needed a saline bolus or blood transfusion since Tuesday (yesterday) morning, and because his blood pressures have been better today, during rounds this morning they decided to move his dialysis back to I=O, and he's tolerated it well all day.
Hopefully with all of these changes and the way he's tolerated them today, he'll lose weight tonight.
He's still receiving several prn (as needed) doses of Fentanyl throughout the day to help him be more comfortable, which sucks that he needs it, but it does help his heart rate come down, and when he's comfortable he's able to oxygenate better, so his O2 sats have been better as well.
He'll have a chest xray, an echocardiogram, and a full cbc workup tomorrow.
Definitely still treading extremely lightly, being very very cautious with optimism. Today was better than yesterday. Tomorrow could be better than today, or it could be worse. We're just taking it all one moment at a time, one decision at a time, and praying for the best.
It's been several days since our last update. Zeke has been extremely up and down, and it's been hard to know really what to say.
Apparently, over the weekend, he had been having increasing issues with his lungs and oxygenation. His right lung had collapsed again, and due to this, his left lung was working harder than normal to make up for the right, and was overinflated.
When I came in on Monday around noon, they had just switched out the dialysis pump. During pump change, his O2 saturation dropped to 40% and wouldn't come back up, so they had to bag him. I was so thankful that I had missed that. Due to the sudden drop in oxygen, they did a chest xray, which showed that his left lung had collapsed. This was the first time for the left - before Monday, it had always been his right lung that had the issues. At this point, his ventilator settings were fairly high - he was getting 100% oxygen, with a rate of 80 resp/min, and the pressure was fairly high as well. Even with these vent settings, he wasn't oxygenating well, and his O2 sat was in the low-mid 80's.
I had a less than pleasant conversation with the neonatologist during rounds that morning. Zeke's lungs are severely scarred from the ventilators (a condition called PIE - Pulmonary Interstitial Emphysema). Due to the scarring, they're not sure if he'll ever be able to breathe on his own. They also said that because of everything he's got going on in his abdomen (the intestinal issues/colostomy, infections, fluid build up, etc...) he'd likely have scarring that would prevent them from being able to do peritoneal dialysis. He said that the prognosis was not good, and there was maybe a 1% chance he'd recover and ever be able to come home.
Monday night, they had several issues with the dialysis pump and the pressure in the catheters. It took quite a while to get everything sorted out and working again, and he had a rough night. He gained 300g (10.6oz) overnight, due to the dialysis not pulling extra fluid off. He did tolerate fluid change that night extremely well, though, which is rare for him. Usually his blood pressure will crash for a while, and that didn't happen.
Due to the issues with the dialysis pump Monday night, his heart rate was extremely high (190-210bpm), and his blood pressure was fairly low (high 20's/low 30's), so they decided to put his dialysis at +5 for the day. He spent most of the day getting 100% oxygen, with the same high vent settings. He was getting fairly agitated, acting like he was in pain, which was causing his heart rate to go up, and causing him not to oxygenate well, so they gave him a couple of extra doses of fentanyl. This helped lower his heart rate, and bring his O2 sats and BP back up. His temp was higher than normal, so they turned off his heating pad, and he seemed to do fine.
I left for a few hours in the evening, and when I came back, things had changed a bit, for the better. He had done well with fluid change - his blood pressure dropped to the 40's, but came back up to mid-60's fairly quickly, without a change in pb meds. His heart rate had dropped to 150-160's, and he was satting in the 90's.
These last couple days have been up and down, but Zeke has been stable today. On the 11th, he had a really rough night. His blood pressure and O2 kept going down regardless of increases in oxygen and dopamine. They ended up having to give him two saline boluses and one FFP (fresh frozen plasma). The FFP finally got him stabilized and he started doing better.
The last two days he's still been seesawing up and down on his O2 and blood pressure and we don't know what's changed that would cause it. His infection still seems to be getting better and he hasn't had any more pneumothoraces. They started him on Epogen yesterday to try and improve his production of red blood cells and they increased his dosage of Nafcillin to try and eradicate the infection more quickly.
Zeke had his first eye exam yesterday. The opthamologist didn't see any issues so he's not showing any signs of ROP (retinopathy of prematurity) which is most common in premies and can cause blindness. So that's good news.
This morning they changed out his dialysis pump and since then he had been pretty low on his O2 sat and his BP. They ended up giving him an Albumen bolus to stabilize his BP and he's been good since. They just changed out his endotrachial tube (ET) for a larger one because he had outgrown the last one (he whistled/squeaked all the time from the air escaping around it). Since then, he's actually been satting high and they've been able to drop his O2 quite a bit.
The doctors are keeping his treatment the same as he's really only had some small speed bumps. Everyone has good days and bad anyways so we're staying the course for now.
Zeke has continued to maintain his blood pressure and O2 levels well since the last update. He's been up and down a few times, but all in all, he's been stable enough to continue to take fluid off. Over the last few days he's lost 380 grams. It's only a drop in the bucket right now because he still weighs 2.9 kilos, up from 1.4 when he was born. At least he's moving in the right direction though.
His treatment is going to continue to be the same. We're just waiting for him to finish fighting off this infection and for him to lose all his excess fluid weight. There's not a lot they can do until that happens. They've started giving him Albumen, which is a protein that will help keep fluid from leaking out of his capillaries into the soft tissue. It should help him continue to lose weight and prevent more fluid from accumulating in his soft tissue.
They are talking about starting him on Epogen, which will help to boost his production of red blood cells, but it's up to the renal docs. Due to him being premature, his body hasn't transitioned to producing mature red blood cells yet. Additionally, the dialysis machine kills some of them off during the filtering process. Due to this, he receives regular blood transfusion to keep his red blood cell count up, but Epogen won't do anything if his body hasn't started producing mature red blood cells yet.
Overall, he continues to improve, though he still has a long road ahead.
Zeke has been a lot more stable over the last two days. He's been able to maintain his heart rate and blood pressure really well. The nurses even weaned him completely off the Vasopressin and he's down to only 10 on the Dopamine. They've also been able to lower his O2 and vents settings and now he's on a rate of 35 and only 65% O2.
Since his blood pressure has been pretty stable, they've been able to get more aggressive with his dialysis. The last couple days they've had to leave fluid on and, because of that, on Wednesday night he gained 400 grams. Yesterday they were able to run the dialysis at I=O (in= out) and so he only gained 10 grams. Hopefully today he'll actually be able to lose some weight as all the fluid weight he's gained is still putting some extra strain on his heart and lungs.
He's continuing to fight off the infection, but it seems that he's starting to make some progress. The last two days are very encouraging, but he still has a long way to go. He's still more than double his birth weight, almost all of it fluid, and he'll need to lose most of that, heal from his surgery, and finish fighting off the infection before he'll be on a good footing.
We're very grateful for all the prayers and support. It's truly a miracle that Zeke has continued to fight as long as he has. Today my Battalion Command Team even came out to visit and offer their support. Again, thank you for everything and we'll continue to update as things progress.
Yesterday Zeke continued to be consistently low on his blood pressure and O2 levels. They had to give him two Boluses yesterday to keep his BP up.
Around 2000 he decelled for a couple minutes and it took a long time for his blood pressure and heart rate to recover to normal levels. I told the nurse that the only time he stays down is when he's had a pneumothorax. They conducted another chest x-ray and he had air around his lungs again. The doctor came in and performed a needle decompression to pull it off. About 30 minutes later it was already starting to re accumulate so they decided to insert a chest tube to keep the lung inflated.
His CRP and white blood cell count are both essentially the same as yesterday, so we're not really seeing any progress against the infection.
The nenonatal team just came by and bottom line is they're not very optimistic about his chances of recovery. All of his issues are feeding off and compounding each other. Right now the primary concern is the infection. The infection is located in his abdominal cavity which takes time to treat. The area in the abdomen doesn't have very good blood profusion and since the antibiotics are administered through the bloodstream, they have to pass through multiple membranes and/or soft tissue to get to where the infection is actually located. The doc said that it would probably take 4-5 days to start seeing improvement and a couple weeks to fully eradicate the infection. Right now he's already on four antibiotics and there's nothing more they can do for the infection other than give him time
He's continued to have issues with his blood pressure and O2 levels which are due to the amount of fluid he's retaining. He essentially has leaky capillaries and the fluids that he's being given are leaking out into the soft tissue, which the infection is also making worse. This continues to cause problems by lowering his blood pressure and making it more difficult for his lungs and heart to function properly. The doc wants to start hydrocortisone as well which may help to stabilize his blood pressure.
Right now it's really just a waiting game for the infection to start receding and for his body to stabilize so that we can start removing fluid to relieve the strain on his heart and lungs.
Zeke's blood pressure and oxygen saturation have been pretty consistently low all day. I left to run to the store and get some food, and as I was leaving, they were coming in to do his abdominal ultrasound.
When I was walking into Walmart, one of the doctors called and said that while I was gone, his breathing had gotten pretty weird, so they decided to do a chest xray. They found that he had another pneumothorax (build up of air around his lung) and his right lung had collapsed again. They didn't place a chest tube, but they did use a needle to remove the air around his lung - the same one that he'd had issues with right after birth. They increased his oxygen and the respiratory rate on the ventilator. Right now, he's at 95% O2, and a rate of 80rpm. He's bouncing between oxygen saturation of 85-100. They also put him back on nitric oxide, because they did a test for BNP levels (something to do with the heart), and they were elevated.
They bumped his vasopressin up, so his blood pressure is in the low 40's.
They did get the colon biopsy results back. He has the 'right' cells, so it's not Hirschsprung's. They're not sure what caused the bowel perforation. They've requested the pku results from Sacred Heart to see if there's anything there that may be related.
Surgery did come in a few minutes ago to go over the results of the abdominal ultrasound. There is no pocket of fluid, infection or otherwise, in his abdomen, which is good. It does mean, though, that all of his tissues are swollen and retaining fluid, and he's got some kind of generalized infection that's affecting basically his whole body. They can't pull more fluid off, because of his blood pressure, but the excess fluid is causing the swelling.
His white blood cell count and CRP levels were down a tiny bit today from yesterday, so hopefully the antibiotic they started yesterday is having an effect. They did start nafcillin today, so we're praying that at least one of the antibiotics will help with this infection.
So, we're kind of at a standstill right now with everything. Ezekiel's not really getting better at this point. He's staying the same in some aspects, and backsliding in others, which is all very very frustrating.
His blood pressure is still fairly low (low-mid 30's; they want it in the 40's), even though he's on two different bp meds (still on the maximum dose of dopamine, and a low dose of vasopressin). His They want his oxygen saturation between 90-95. When it goes higher or lower, they'll adjust the amount of oxygen he's getting.
His heart rate has been in the 140's-160's, which is good, and he's not having many brady's. His ventilator settings have been up and down. Right now, he's on a rate of 55rpm, his pressures are 5 and 20, and his O2 is at 74%. He's been down on all three settings, and he's been up higher than where he is now.
He just received another blood transfusion - his hematocrit was in the 20's this morning, and it's up to 36+ now.
He's still on versed and fentanyl to try to keep him comfortable.
His fingers are still pretty gnarly looking. His middle finger looks better, but the ring finger on his right hand is still black. They've been hoping that it was a microclot that got lodged in his fingertip, and that once they started the second bp med, it would help, but it doesn't seem to be. They're not really saying much about that right now, but if it doesn't clear up soon, he'll likely lose that fingertip.
His white blood cell count has still been high, and that, combined with the fact that his abdomen is distending out to the sides, and the allover swelling/edema he has, means that there's some kind of infection somewhere in his body that he's not able to fight. He's on four different antibiotics right now (flagyl, vancomycin, amphotericin b, and cefepime). The amphotericin is to treat a possible fungal infection, since the other antibiotics for bacterial infections weren't having much of an effect. They just started this one yesterday.
He's also receiving something called mucomyst, which helps break down the fecal matter and mucous in his digestive tract and helps it pass. He's not a big fan of this - it's the only oral medication he's getting - and ends up spitting some of it up most of the time, but it's definitely doing what it's supposed to, and he's passing stool into his colostomy bag.
He also still has the superpubic catheter (placed through his abdomen into his bladder), and he's having some urine output. He's had about 20mL in the past 8 hours or so.
Because of his low blood pressure, he's not tolerating them trying to remove excess fluid during dialysis, so they're leaving on 5mL/hr, instead of pulling off the same amount of fluid they're putting on. (Because of evaporation, sweat, etc..., he loses about this much fluid anyway).
He's not receiving feeds right now. He has to wean off the vasopressin completely and go down on the dopamine before they'll start breastmilk feeds again. He's still receiving lipids and tpn fluids through his IV, which gives him the fats, electrolytes, nutrients, etc... that he needs.
His weight, head circumference, and abdominal circumference are all taken at midnight every night. The goal right now is to get all of them back down. Right now, he's up almost 2 1/2lbs from his birth weight, which, since he's not actually eating anything, is all fluid retention.
What needs to happen first, is the infection needs to be identified and gotten under control. His body isn't able to do anything else if it's trying to fight infection.
Once the infection is gone, hopefully his swelling will go down some, which will hopefully help his blood pressure.
There's a lot of unknowns, a lot of 'wait and see', and a lot of 'we hope' going around. It's hard, because he's got so many different things going on.
I really just want to hold my baby. I want him to get better. I want him to get well enough that we can hold him. I want this infection gone. I want him to lose the bad weight so he can grow and gain good weight. I want him to feel better. I want him to heal and grow and come home. It's been a rough week or so with little to no progress. I'm really struggling right now, knowing that there's literally nothing I can do for him to help him get better.
2610g (5lb 12oz)
His poor little fingers... They're starting to look better, though!
Hard to believe these were all taken on the same day!