Jesh's procedure

We dropped Aaron and Leah off at my parents house on Thursday night so we would be ready to get Jesh to the hospital early Friday morning. The two kids were so happy to be at grandma's again they were ushering me out the door!

We were nervous about Thursday night as we were not supposed to feed Jesh anything but Pedialyte after midnight. Lucky for us Jesh slept until 5am. We changed his diaper and tried to bottle feed him the nasty grape pedialyte. It didn't work. We finally gave up and gave him his pacifier, he fell right to sleep! He woke back up at 7:30, we changed him and tried to feed him again thinking he was probably starving. He had nothing to do with the bottle and took his pacifier again and fell asleep in his car seat. He slept all the way to the hospital. We checked in and got into our pre-op room. The nurses were in love with him (who wouldn't be!) they took his vitals and we changed him into his robe (the picture is on Ty's phone, but he looked cute). We wrapped him into a warm blanket and...HE FELL BACK TO SLEEP!! He slept all the way up to the time they took him back to the operating room.

We waited in the crowded waiting room for the Doctors to come and get us. It took about 15 minutes. They only had to use gas this time and he was only under for about 5 minutes. The procedure only took 1 minute! Everything "down under" looked great. They did stretch him a little, which caused a little bleeding. By time the Doctors were done talking to us Jesh was awake and ready to eat! He was screaming when we got to him, but he nursed right away and calmed down. By time he was done eating, he was smiling and playing. They discharged us shortly after!

He was great all day after that and slept a lot. He slept the whole night (8pm-7:15am!). Doctors said that we have a follow up in one month, and hopefully this would be the last time we needed to stretch his scar tissue. The scar on hi tummy is forming a little weird so we might have to fix that when he is a little older.

All in all the day was fine and our little boy did amazing!

Hopefully tomorrow will be the end!

Tomorrow we check back into Deaconess hospital. Hopefully it will be the last procedure Jesh will have to have, and we can put this all behind us. We check in early in the morning after a night of only pedialyte. We don't know if they will insert an IV but we do know he will be "under" for 5-10 minutes and then we come home after he wakes up. Should be fun.

Pray for Jesh.

Pictures from hospital and other fun stuff

Here are a few pictures from the hospital AFTER surgery and when some of the wires were removed. (I don't know how to rotate pictures, sorry)

This is Jesh on Sunday April 3rd. By this time, the oxygen had been removed but the stickers that held the tubes on were still on his face. He still has his IV in his hand and all the monitor stickers on his chest.

This is the first time I got to hold Jesh after surgery. It was hard to handle him with the wires, but SO worth it.

This picture is from Tuesday, his first really good day. The outfit will always be memorable as it is the first outfit he "blewout" in. At least we know things are all working properly!

One of Jesh's baths in the hospital.

AT HOME! One of his many baths here, looks more comfortable to me.

I debated about putting this up. This is a picture of the incision 7 days post surgery. The upper right part is where the colostomy used to be. So, it goes from his left side (the right of the picture) to all the way under his belly button

To Wrap Up

The rest of Tuesday went wonderfully. Jesh ate very little, but that is to be expected. We were told that when he starts eating his tummy would cramp up because of the lack of food over the last few days and due to the trauma of surgery. Every time I nursed he would cry after, but it was short lived. He continued to poo well, producing dark green almost black stool, again due to the lack of food. Early afternoon brought a surprise and change for us. We had been in one nursery of the NICU all by ourselves. They admitted another post op patient and we were to share the nursery. No biggy. The little girl did not come out of surgery well and was moaning and crying, so they moved us! We went to a "rooming-in" room all the way down the hall, far from a nurse. Basically we were on our own. Things went fine throughout the day and through the night. Jesh still sleeps most of the day and we were told that is normal. Today his little bum started to get a small rash. We were told to expect that as his bum had never seen poo before. We treated it with cream. Jesh is still taking Tylenol. Dr saw Jesh today and was confident in his recovery and told us we would be leaving tomorrow.

Wednesday:

Today I woke before Jesh and started the post below. Things look to be going well. When Jesh woke up he wouldn't stop crying. I tried feeding him and changing his bottom (which by then was BEET red and tender) but nothing worked. I ran to the nurses station down the hall crying. I had no idea what to do and felt completely abandoned by the staff. A nurse came to see us and dosed him up with Tylenol. After going through the charts she noticed that his urine output was not sufficient. She left to go call the doctor about his condition. Luckily for us, he was already in the hall coming to see us. I held Jesh as he pealed the bandages off his incision for the first time. WOW that thing is huge, way bigger than I thought. Doctor noticed that there was way too much fluid seeping from the wound and determined that an infection had formed in between the stitches and the top layer of skin of the incision. He touched it and more fluid ran from the sides. He looked at me and said "you are not going home today". Um...duh. He ordered us to give him warm baths three times that day to see if we could get it to drain anymore. We did and it did! (haha that is a funny sentence.) The fluid that seeped from the wound was brown almost red and it ran everywhere. During his first bath Jesh peed 3 times, thus ending the urine concern. We stayed in our private room on Wednesday night and Jesh did great. The nurse kept him on a four hour schedule of Tylenol.

Thursday:

This morning we woke up much the same as yesterday. Jesh cried even after eating. Doctor, nurses and I think that his tummy is cramping from the milk as he is taking more and more each feeding. Also, his bottom is so inflamed and sore that it is causing pain anytime he poos, pees or is changed. Doctor feels confident that the infection will seep out if we keep up the warm baths, and is sending us home! He told us all the precautions and warning signs along with instructions for home care. Unfortunately, he believes the rash will last up to three weeks (poor little boy). And we need to be back next Friday for a small procedure where Jesh will be knocked out again. This time it will only be for five to ten minutes. They need to stretch the scar tissue around the "attachment" area up his bottom. He will be home by the afternoon.

So, Tyson picked us up and we were home by 12:30. It is so good to be home, I missed my family. I think Aaron and Leah grew a foot this week and spring has sprung in our little canyon. Jesh is doing well, still having warm baths. His bum is still terribly sore and he cries when we lay him down to change him. All around he is pretty cranky throughout the day. I just think to myself that I would be too if I went through what he did, in fact he is handling it better than I would. The Doctor calls us daily to check up on Jesh, until the seeping stops.

Thanks for all your prayers, they were truly felt. Any ideas on how to treat diaper rash, they have to be pretty hard core, let me know. What we are doing, by doctors orders, is just not helping that much.

Jeshua on the recovery roller coaster

Wow! It sure has been a rough few days. I (Melissa) am sorry for the lack of updates, but every time I thought about updating the blog I found myself crying. I find it very difficult to put into words the experiences of the last few days, they have been filled with pain for Jesh and I. Now, when Jesh is sleeping "naturally" and peacefully beside me, I am going to attempt to share with you what has been happening.

Saturday Night:

After Tyson left on Saturday, the nurses and Doctors continued to pump Jesh full of medications. There are three different medications being used to control his pain. The first is morphine, now only administered every four hours due to his lack of respiratory drive shortly after surgery. The second, good old Tylenol. And the third, Versed a sedative to keep Jesh calm. It is very difficult watching them give Jesh medication, I know it is for his benefit, but to watch him fall into a "groggy" state is eerie and something I can't fully come to grips with. Saturday night was filled with bouts of crying from Jesh as certain medications would wear off and he would come to. But sleep would come easy after each dose of meds.

Sunday:

Today the day nurse tried to back Jesh off some medication, trying to go longer between each dose. It wasn't very successful and Jesh payed the price of that decision. It is super easy to stay on top of pain, but when you fall behind and the pain is strong it is hard to get back on top. So, through the afternoon and evening they tried desperately to get back to a state of no pain. The night was extremely difficult for all as we tried to get him comfortable, it was a hard feat.

Monday:

Today a new nurse was on the case! He has been in pediatric care for over 20 years and has worked with post op babies for several of those years. He thought by this time of recovery Jesh should be up and in momma's arms and moving around. He also wanted to back of the meds after calculating that Jesh had received 17 doses of morphine so far. I lovingly held my baby boy for a few hours has he drifted in and out of sleep, showing little signs of pain. By late morning I noticed a change in Jeshua, a very hard change for me to see. He became totally listless, barely moving, crying, sucking or opening his eyes. When he did open his eyes there was no recognition in his gaze. The nurse was confident that Jesh was just sleeping as he came down from his medication high. He began to throw up and gag, coming out of his sleep with jolts and signs of pain. He never cried, and would fall instantly back to sleep. Even though the nurse was confident Jesh was fine and doing well, I knew he was not okay. I had seen this behavior before, the last time we were in the NICU. I felt that Jesh was in incredible pain and shutting down was his defense mechanism. No would listen to me, and I broke down. Early evening my parents came to visit, it was nice to cry on someone's shoulder. The nurse retold the events of the day to them and I could not help but weep. By 6:30pm I think the nurse was beginning to think that I had been right. He decided to give Jesh a half dose of morphine. Moments after he did, Jesh woke up. He opened his eyes and started moving again. He had been in pain all day and the dose of morphine was just enough to take the edge off. It was nice to see him like that. Also throughout the day Jesh was not urinating, despite being pumped full of IV fluids. They did a bladder scan and decided to put in a catheter. Instantly they pulled out 180 ml of fluids, within 20 minutes they relieved Jesh of 320 ml of urine. His poor body. An hour after inserting the Catheter, he started passing gas and stooling real stool in large amounts. YAY! The night was still filled with bouts of vomit and gaging but at least things on the other end were moving in hopes to alleviate the vomiting. He had another half dose of morphine around 4:30 am.

Tuesday:

Jesh WOKE up today. The nurses call it "turning the corner". A completely different little boy, MY little boy. He smiled for the first time and would follow me with his eyes. He began to suck his hands, then his pacifier, then a small amount of the bottle. He was moving around with no signs of pain, he was poopin' like a fool. He seemed content. After the doctor came to see Jesh, he allowed me to start nursing.

**After Starting this post Jesh has taken a little step back, the downside of this roller coaster. I will finish this post when I find a moment. Please keep Jesh in your prayers as he is struggling to recover.

Recovery

Jeshua returned from Surgery Friday early afternoon with his tummy sewn up and his plumbing hooked up the way it was intended (well, pretty close to the way it was intended)! He responded very well to the anesthesia, and the pullthrough was textbook.

The operating room is on the ABSOLUTE opposite side of the Deaconess complex than the NICU, so shortly after 8am Friday we followed the two nurses pushing Jeshua's huge NICU crib down twisted hallways and up elevators until we reached the point we were no longer allowed to follow. Despite not having eaten anything for the entire morning, and subsisting on electrolyte water the entire previous day, Jesh was happily squirming around with eyes wide open as we loved on him and said our goodbyes, standing in the hallway of the hospital. He had no clue what was happening and received our kisses with his usual funny winces, and we returned to the NICU to await word. The surgeon had nurses call several times throughout to give us status updates, and Jeshua returned to us shortly after noon, still under the effects of the sedation drugs they'd given him, and still using a ventilator. By mid afternoon, he was fully breathing on his own, while still asleep, so they removed the ventilator tube and began watching for signs of pain. Melissa and I were so grateful to see him there; his eyes would flutter open occasionally, and we anxiously watched to for signs that he was coming out of the "grogginess".

Things took a little turn for the worse around late afternoon when he began showing signs of pain. He was still sedated, but would wake up with a jolt and kick and cry for a few seconds at a time, several times per minute. He began to fight and scream longer each time, and they were coming more frequently. They'd administered morphine earlier which can be given every 2 hours at most, so they gave him another dose at the 2 hour mark. Unfortunately, he gave no sign that the pain killer did anything to dull the pain, and instead began with breathing fits where'd he'd stop breathing for a short time in between the pain spats (happens often with strong doses on infants). Later in the evening they attempted a different medication with a stronger sedative effect, which thankfully worked very well, letting him fall peacefully asleep. He remained asleep throughout the night and into Saturday morning. I ended up staying at the hospital through the night to keep an eye on baby and mommy.

Saturday morning, I picked up Aaron and Leah and returned home, while Melissa remained at the hospital. Before I left, Jesh woke up and, while still groggy, could focus on us and waved his hands around. He was doing great and seemed relatively pain free! His painkillers were being stretched out as he truly seemed to be recovering quickly. He was somewhat agitated this afternoon so they stepped up the meds a bit to compensate, but we're still hoping for a second good night. The doctor thinks we'll be able to feed him pedialyte water tomorrow and really jump start his bowels again, and hopefully he'll be breastfeeding again by Monday. He had a small BM (mainly stomach/intestine fluids) today, so things appear to be moving the way they should. We hope to see more of that "action" in the coming days. The doc thinks we're still on track to discharge late next week.

Jeshua vs. Hirschsprung's, round 2

The fateful week of Jeshua's last surgery is here. The past 8 weeks have been good as we've become pros at colostomy care. When I say "we", I really mean Melissa. After several days of colostomy blow-outs, Melissa and I were able to coax the gasket into lasting 48+ hrs, allowing us to remove it intentionally instead of waiting for an explosion. Aaron and Leah have been great, and Jesh is down to waking once most nights, twice on occasion, and even sleeping through the entire night a time or two!

We checked into the hospital Thursday (yesterday) morning at 8am. The surgery isn't until today (Friday), however they wanted to bring him in 24 hours early to clear out his bowels and get some baseline vitals etc. Aaron and Leah went to Grandma's house early Thursday morning. They were so excited when Grandma picked them up! We've tried explaining whats happening, but when we'd get to the part about ".....and you'll stay with Grandma for two nights..." we lost them every time.

Throughout the day Thursday, they allowed Jesh to drink only electrolyte water. The water kept him somewhat content throughout the day, despite our worries that he'd be starving and grumpy. They gave him a naso-gastric tube for only a couple of hours to administer the laxative orally. It is horrible tasting stuff they know a baby would never voluntarily drink. And boy did it work (imagine putting a small colostomy bag over a howitzer...yes, we had blow-outs)!! Melissa and I took turns holding Jesh throughout the day. Besides being bored out of our minds, the day went fine and was rather uneventful. I returned home to sleep while Melissa slept on a roll away bed in Jesh's room (neither of us really got more than a few hours of sleep).

Dr. Fisher is the primary pediatric surgeon here at Deaconess, however he brought in a partner who will be spending the next couple of years working with him here. The partner arrived yesterday from Tacoma. Because of the complexity of the surgery, Dr. Fisher opted to wait until the second surgeon arrived, otherwise we'd probably have had the procedure done a few weeks ago. The surgery will begin around 9am (1 hour from now) and is called an endorectal pullthrough. The incision they made for his colostomy is about one inch wide, and they will expand that across his little tummy a few inches to give them room to work. Without going into details of the surgery (googling "endorectal pullthrough" returns several results), it's expected to take them about 3 to 4 hours to complete, after which they hope to stitch him up and send him back to us here in the Neonatal ICU. Jeshua is sleeping right now in Melissa's arms, which is surprising as he hasn't eaten since 5am. The surgeons, nurses, anesthesiologist, etc have paraded through the room already ensuring that we fully understand what to expect, and giving us yet another opportunity to ask questions. Even through they've asked us for months if we have any questions, we always seem to find one more to ask. They'll return in about 30-45 minutes to put him on the ventilator and sedate him. Melissa and I will remain in the NICU room during the surgery, and are told to expect calls every 45 minutes with updates on how things are going. Lots of prayers and I'm sure a few tears, and we'll see our little baby in a few hours.