God is good

Today i got jack's sedated echo results. Jack's heart is normal!

Recovery day 8

So...There has been a lot of whining, crying, screaming, and hitting in this house since Sunday night. No...not Jason! teehee! Ok. You know who I'm talking about. Sunday night wasn't much fun. Jack was up most of the night. Monday involved a lot of cuddles and kisses. Jack played for a short while on the floor but mostly wanted to be held while he moaned. Monday night, Jackson didn't go to sleep until 1am. He was up at 3am and 6am and then slept until 10am. Tuesday also involved a lot of cuddles and kisses. There were times when he asked to play, and even laughed and talked. He has been trying to feel better but it is oh so obvious that he is in pain. It's a mixture of his belly, head, and nose.

I called the ENT surgeon's office today to ask about better pain management.  I made sure to let them know that Jack was fussing and moaning still, just like when in the hospital. I was told that Tylenol and Motrin were the only pain meds we could use (which we are already using with no relief). The doctor didn't want to prescribe Tylenol with Codeine or something like Morphine or Vicadin. Pretty much any med that can cause constipation. They don't want the ileus to come back.

UGH! So very frustrating. I pray tomorrow is better. Jason and I have been taking turns holding a fussing and moaning Jack.

Happy Father's Day for sure!

Let me back up to Recovery Day 5: Saturday was tiresome. Jackson moaned and fussed ALL night Friday. I don't think he slept more than an hour. This means I was up all night too! I napped at every chance. I think I slept through all of the doctors in the morning as well. I didn't see any. Then again, I didn't get out of bed until 10am. I don't think I went to bed until 4am, and I definitely didn't sleep well because Jack moaned and moaned and moaned. But...Jason and Evelyn came around lunch. And...I went home with Evelyn FOR THE NIGHT! We went to dinner (Texas Roadhouse!) and a movie (Mr. Popper's Penguins!) and I slept in my own bed. So nice. What a wonderful daddy! I then found out the next morning that Jackson was awake ALL night again!

Jackson started his formula this morning at his regular rate but the formula was watered-down. The GI doctor told Jason that if Jackson tolerated each feed, which included one feed at normal mixture, Jackson would go home. Well...

Happy Father's Day to Jason! Jackson came home tonight!
He's very uncomfortable and tired, but he's home!

Recovery day 5

Jack is up to 25cc/hr or 1tsp less than an ounce. He has been very fussy but knows how to stay comfortable!

Recovery day 4

Well, after the setback last night, today went much better. Jackson started his Pedialyte over at 9am. 5ml/hr for 6 hours. He made it to 10ml/hr for 6 hours. He is now on 15ml/hr. At 3am he will be on 20ml/hr. So, according to the PEDS Dr. I spoke with today, Jackson should start his formula 3am Sunday morning he should start his formula, but I personally hope they will wait until like 6 or 7am to start the formula so he can get a break with his belly. Of course, just like before. . . if Jackson vomits we will have to take a break and start over. However, I can say with a very serious face, like you can see me right now!, Jackson has passed gas 5 times today! This is a good thing. This means that his intestines are waking up. We will know the ileus is gone for good (notice how I spelled ileus correctly) once Jack poops. Yep...I am once again talking about poop and all disgusting things.

Jackson has been uncomfortable most of the day, especially since 2pm. The nurses suggested I take him for a walk since he was awake most of the afternoon. We got a gown on him (he's been laying around in only a diaper), unplugged the IV pump and Enteral pump-the one feeding Jack the Pedialyte, unhooked the Pulse Oximeter from the monitor, and placed Jack in his KidKart. As soon as I entered the hallway his head perked up. I told him we were going to go for a walk and signed "walking". Soon after we started walking the hall (KidKart with Jack in one hand and the IV pole in the other) Jack started saying "wawa wawa" which translates to "walk walk" and I of course sang the "walking walking" song. If you feel the need to know the song, it is to the melody of frere jacques:
Walking Walking Walking Walking
Down the hall. Down the hall.
Walking Walking Walking
Walking Walking Walking
Down the hall. Down the hall.

Yes, it really is that simple and Jackson and the other kids at his school love it!
We also went into the playroom, which is wonderful. I sat Jackson's chair in front of a shelf with baby toys. He pointed at the toys, with the hand that isn't covered from the IV. However, I would place a toy that he pointed to in front of him and he didn't seem to want to do much. Maybe push a button once, but that was it. He did continue to point to different toys. This is when I discovered that he was pointing to toys that we have at home!

After the playroom I took Jackson out to the meditation garden. This is right outside my window, which is just lovely because there are chimes galore, in all different pitches, blowing softly in the wind. There is a pond, beautiful flowers and shrubs, a water feature, and a super cool log cabin for the kids. During our time outside Jackson was saying "weeeeee". He liked it!

Recovery day 3

Hi there.
So...Today was better than yesterday. No more need for oxygen. The stomach pumping has been stopped. Jack's skin is no longer very pale and white. His eyes are no longer sunken. He was awake for a few minutes, here and there, like maybe three times all day. His breathing is clear and his cry is strong. He hasn't vomited since Wednesday evening.
Today, at 4:30pm, Jack's feeding pump was started with Pedialyte. He is receiving 5ml/hr (that's 1tsp/hr). His IV fluids are on 35ml/hr. After 6 hours he will go up to 10ml/hr and IV will go down to 30ml/hr. So...around 4:30pm on Friday, Jack will be getting 20ml/hr of Pedialyte and 15ml/hr of IV fluids. I don't know when formula will be started, but he would be getting 40ml/hr Pedialyte and no IV fluids at 4:30pm Saturday. This would seem to be a good time to try formula. He would needs 24-48 hrs to formula, to be sure he could tolerate it before I would be ok going home. Of course, we must consider the fact that Jackson's gut might reject this plan. I'm hoping it doesn't. "WAKE UP INTESTINES! START MOVING THOSE FLUIDS OUT OF YOUR BODY!"

Oh, and I've been spelling ileus wrong. Oops! I was spelling it 'illeus'. Nope, it's spelled 'ileus'. And to remind everyone what that means: ileus/parilytic ileus/nonmechanical intestinal obstruction 

Alright: Well. . .it happened. I just had an hour break because Jackson vomited. He vomited bile. He only had 20ml of Pedialyte over 4 hours. That's not even an once. His stomach is now being pumped, food stopped, and IV set back at 40ml/hr. This will go on until stomach contents run clear. BOOGER!

I got a chance to go home today. It was nice to be away. Evelyn spent the day at a friend's house (THANKS SO VERY VERY MUCH). I picked her up and we spent some time at home. I wanted to have some time alone with her. She, again, is getting passed around to family and friends. It's hard for her. Very hard. She cried for 40 minutes on the way home last night. We went shopping for Father's Day and, well, Evelyn got a new baby, a baby doll swing, and clothes for her Ken doll. Ken has been naked for several months!
My mom drove back home today (THANKS AGAIN FOR YOUR HELP). She has been at every surgery. My mother-in-law took Evelyn overnight the night before surgery (and to the movies), and has visited every day. Tomorrow she will be spending the day with Evelyn (THANKS FOR ALL OF YOUR HELP).

recovery day 2

So. . .remember when Jackson had surgery for a ureter stent replacement and had more renal pelvis removed with a laser, as well and more sludge removed from his right kidney, as well as a tear duct probe? And then he had a post-op illeus and we were stuck at St. Louis Children's for 8 days?
Well, we've got some familiar occurrences going on today. Jackson vomited from 4am-1:30pm. He is vomiting bile and isn't getting anything by mouth/gtube anymore. He is vomiting old blood from the surgeries but formula never came up, even when he was getting it through his gtube. He is lethargic and sleeping a lot (though that could be from the morphine because he can't get the Tylenol with Codeine anymore). He is pale and his eyes are sunken. Jackson's stomach is getting pumped just like before. We haven't had an abdominal xray to look for an illeus and no labs to check for dehydration but I'm sure they are coming. GI has been consulted.
So much has gone on since overnight I'm at a loss of where to start.
Here's a picture of Jack in his bed. I took this around 1pm.

number 8

I had a memory this morning while driving to the hospital for Jackson's surgery (I was in the van at 4:30am and it was raining). I remembered March of 2009 when Jackson was just 2 months old. He was admitted for the first time since birth in the NICU. We were at St. Mary's Hospital in Decatur, IL for RSV and that first night in the room I wrote my first blog. This was back when I was using www.carepages.com. I stayed up all night, literally, writing about the pregnancy, birth, nicu time, and first 2 months. Here I am, 27 months later, and I'm still writing my blog, although now, obviously on www.blogger.com.

This morning, as I'm sure everyone has figured out, was Jackson's 8th surgery. Jackson is 29 months old and he just had his 8th surgery. I thank God every day that Jack had a 16 month break between surgery number 7 and surgery number 8.

Ok. Here I go with the surgery.
Jackson arrived at Pediatric Surgery at 5:30am. My mom came (she's been at every surgery). Jason came as well. It was really nice to have him here. During pre-op we learned that Jackson was to also have some surgery on his nose to straighten his septum. That was fine by us since he was already going to be sedated. Jason and I took him back to surgery at 7:35 after a wonderful drug called Versed ( It makes Jack all loopy!) We were told after the IV was placed and anesthesia was started, the Adenoid and Tonsil removal should take around 30 minutes. Jackson also had to have the sedated echo, so some 15 minutes or so for that. Well, 2 hours later we finally see the ENT doctor. We were all getting nervous because we expected the surgery to take 45 minutes once surgery started.

Jackon had the echo first. After he was prepped for the ENT procedure, his doctor worked on his tonsil removal. She said that his tonsils were similar to an adult, not a child. Every time she pulled up a tonsil to cauterize and remove, part of the tonsil would break off. This happened many times. I let her know that I thought maybe this was because of the 'cutaneous' part of his syndrome. The adenoid removal came after the tonsils. On a scale of 1-4, Jackson's adenoids were a 3. Next came the septum restructuring. This was supposed to involve a surgical tool that slowly pushes and forms the septum. We learned from the ENT that Jack's nasal passages were practically closed and she was very surprised that he could breathe through his nose at all. She performed an outfracture of turbinates. I tried to find some info quickly to link for you. I am so very tired. Here's a picture of the inside of the nose with images of the septum and turbinates.

Jack did not wake up happy in recovery. He was limp at first but very fussy. He kept trying to sit up on my lap and would fall forward because he didn't have strength yet. Jason had to hold him because he was trying to pull at the IV and kept fussing and hitting. We received a wonderful drug to calm him down. It was magical! Jack made his way up to a room. I wish I had some good news regarding recovery but there is no change between 11am and 10pm. Jackson has been given oxygen several times because his saturation levels keep dropping They have dipped to 88 and to 86. His ear is bleeding every now and then from having excessive wax removed. His nose he bleeding every now and then from the nose surgery. His mouth has a bunch of dry blood and his breath is very stinky. His voice is weak and barky sounding. When he cries he sounds horrible. When he coughs he sounds miserable.

I pray that the morning will bring a happier Jack.

The day before surgery

Jack hasn't had surgery since February, 2010. Tomorrow he is having what should be considered minor surgery, adenoid and tonsil removal. I am nervous. Jason is nervous.
So many cool things are happening right now. Last night, jack was bearing weight! This morning he woke up, who knows when, and I went to get him and he was reading a book. We got jack two new Spongebob t-shirts last night. This morning, jack asked if he could wear one. I put his shorts on him, up to his knees, while he was sitting on my lap, and he took them off!
I hope he recovers quickly!
I am afraid to commit myself to anything because I don't know how jack will be, when he will be discharged.

countdown to surgery

Jackson has his adenoidectomy and tonsilectomy on Tuesday, June 14th. He is also having a sedated echo at the same time. I got the pre-admission phone call yesterday, Thursday. I was on the phone with the nurse for an hour! Wow! We had to go over all of Jackson's history:
Birth history (6wks early, emergency c-section, transfer to NICU, oxygen at birth).
Genetic syndrome (Cardiofaciocutaneous Syndrome)
Weight issues (failure to thrive) skin (rough, red, like sandpaper)
Neurological (history of seizures, global developmental delay, CoQ10 deficiency, muscle tone (hypotonia-low muscle tone), arachnoid cyst and enlarged cisterna magna at the posterior fossa, large ventricals.
ENT-Astigmatism, intermittant strabismus, narrow ear canals, deviated septum, high-arched palate, long palate, trouble swallowing, doesn't eat by mouth.
Cardiac history-ASD (atrial septal defect), murmur, history unknown-hence the sedated echo
GI-Gastrostomy tube-placement in April 2009. dysmotility, inverted short duodenum.
Urological/Renal-Bilateral hydronephrosis, right pyeloplasty and UPJ (ureteropelvic junction obstruction), two ureter stents, sludge removal from right kidney, left inguinal hernia repair
Anesthesia history-malignant hyperthermia, fevers after surgery even with MH OR setup, O2 low after one surgery (Jack was grey and limp and needed 3Liters of O2)
Medication-CoQ10, Poly Vi Sol, Cytra-K Oral Solution (all through G-tube), Nutropin AQ Growth Hormone

Phew! Yah. that took an hour.

I got a phone call this morning from the pre-admission nurse this morning. She spoke with Anesthesia. Jackson is no longer having surgery in the Pavillion at St. John's (where outpatient procedures are performed). His surgery has been moved to the OR in the hospital.

I am very happy about this. I am still nervous but happy the hospital is taking good care of Jackson.