Eat Happy!

Eat Happy!

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Saturday, October 27, 2012

Adios Adenoids and Toodaloo Tonsils

A Timeline............



Thursday, October 18th

We arrived very early in the morning for pre-op. The surgery was scheduled for 7:30A, the first case. The surgery went well. Ian's tonsils and adenoids ended up being abnormally large enough that they were sent off to pathology. He seemed to be doing alright afterwards. They were keeping his pain under control by narcotics...... Vicodin to be exact. It seemed to be helping. He slept well that night.






Friday, October 19th

Ian came home the next day. We were a little concerned about coming home so early. Things had run the routine stay and Ian was discharged. I had a bad feeling about the next week. Ian did a lot of sleeping when we came home. The narcotics not only relieved the pain, but gave him a chance to nap, a lot!




Saturday, October 20th

Ian slept until 10:30 this morning, day three post-op. He was up at midnight and 4A with episodes of coughing and retching, and lots of crying... from all the mucous in his throat and nose. He was so extra tired. After being up for less than two hours and having two more episodes, he went back to sleep. Crappy thing is, drinking cold water and keeping the throat moist is a huge benefit to recovery.... Ian won't drink anything. Our favorite thing was the old goodie bulb suctioning........ very carefully. Ian would not swallow.

Hopefully, when it is all over, we will be ahead of where we were pre-surgery. Ian spent the day upstairs with us, a few toys, and some DVR-ed and taped videos. We spent the day in our pjs. He was having coughing and retching episodes on and off for the afternoon. While he was awake between naps we were able to syringe 20mLs of ice water through his mouth, and pushed four ounces of Pedialyte through the G Tube. We are trying to keep him super-extra-hydrated for healing. We even tried a few times to get him to chew on a wet washcloth.

Strangely enough, the child we had after dinner must have been a different kid. After his second two-plus hour nap and a bath, we noticed Ian having an episode triggered by bearing down. Ian's vagus nerve is so sensitive that bowel movements will set off retching. Since Ian hadn't pottied since Wednesday (day before surgery), we knew his body was trying to get back to normal post anesthesia...... or so we thought.

We gave him a little help with glycerin. Poor kid started squirming and whining like crazy. Once we had two good movements, he was a completely different kid.

Now, I certainly don't think that was the only problem, but it certainly made dealing with the other problems much easier for him. Vagus nerve irritation creates mucus... Which is already an issue post-op.... Plus, it hurts too much to swallow it. Inevitably, this lead to way overproduction of mucus, retching on it, and refusing to swallow...... Leading to more mucus and more retching.....

He never set foot downstairs all day and Tom and I only went down when we needed something. We had a family day upstairs. The second half was wayyyyyy better than the first half.



Sunday, October 21st

Ian was admitted back into the hospital for post-surgical complications. The coughing and retching and feeding intolerance was so severe. He was at a high risk of hemorrhaging the blood clots from the surgery. 

Re-admittance

The hydrocodone (Vicodin) caused severely delayed GI symptoms and needed medical intervention to be relieved. Radiographs show dilated intestinal loops from previous impaction. No perforation was seen. Ian's feedings were removed to rest his GI system during healing. He was on IV fluids for that time. He could have anything he wanted by mouth, within reason (no chips, etc.) He spent a large remainder of the recovery period inpatient where he could be monitored. His retching, feeding, hydration, and oxygen saturations needed monitoring.

Ian had Tylenol for pain as needed, with morphine as an escape backup. He had no pain medication since noon and was showing no signs of pain in addition to the ones when he was on the narcotics.



Monday, October 22nd

Ian had a rough night of with retching, suctioning, trying to potty, and with people in an out of the hospital room all night long.

We met with the doctor who decided to do a bowel cleanse to help clear anything that might have been getting in the way. The radiographs showed lots of air in the bowels. After the cleanse, Ian was able to work his way back up the feeding routine scale.

He was still having a hard time with the healing "scabs" in the back of the throat. They caused lots of retching. Nothing can desensitize that area for him. He continued getting Tylenol for the pain, which was minimal at this stage right now. The resting bowel and elimination of hydrocodone has helped him very much.

At this point, Ian was able to rotate with Tylenol and Motrin for pain. The next three to four days were very uncomfortable as the scabs are sloughing off. This is also the most susceptible time for bleeding....... so with Motrin, he was on close watch even more. Our family and our ENT decided Motrin was a better avenue than hydrocodone. Nothing is perfect.

The next few days we were there, waiting for everything to pass. Ian continued to crack a few smiles and high-five all the nurses and techs. He of course hated the IV and the bracelets, but who doesn't.

Mommy Snuggles
Daddy Snuggles


Tuesday, October 23rd

Overnight, Ian continued receiving the laxative to clean out his GI tract. It began at 2:30P yesterday afternoon. By night time, he was getting 100mLs per hour, continuously. At 2:30A...... well, you know what happened! After a thorough bed changing and cleanup, we noticed Ian’s IV bandage was soaked. Turns out, the IV had slipped out. So, at 3:15A.... down the hall we went to the treatment room (This is a place for procedures so kids’ rooms stay “safe rooms.” Why they don’t do this for adults is beyond me!) for a new IV. By the time we returned, Ian was so tired and back asleep quickly. Throughout the night, we were periodically changing diapers. Laxatives would continue until everything ran clear.

In the morning, it was still going. After about 18 hours, around 8A, they turned it off because things were completely cleared out. I cannot imagine being on laxatives for 18 hours straight! It must have been way off in there........ thank you hydrocodone. Around the time of the cutoff, Ian began having another retching episode. It turned out to be a bad one. As we were gently using the suction, we noticed blood. Ian was shedding a piece of a scab from the healing process, a normal occurrence....... the bleeding was not. It was only for a minute or so and was minor. No action was needed, but scared the crap out of us, and Ian.

That night, we had decided to try the Motrin-Tylenol alternating route instead of hydrocodone. Around day five or so, kids have the most post-op pain, because of the shedding. Once there was a bit of bleeding, Motrin was bumped for a bit (since it promotes bleeding). Thankfully, there was no more bleeding.

Overall, the day was an improvement. Ian hardly had any retching.... maybe six episodes or so, smaller ones. This is a large improvement over the 25+ on Sunday. We hardly needed to use the suction at all. The doctor decided we could begin to reintroduce feedings. We were even able to have Ian’s home pump cleared by the hospital so he could use his backpack and walk around.

We decided as a family that since Ian no longer needed IV fluids, and the remainder of our stay was hopefully limited to a few days...... that we would clamp off the IV and leave it in.... understanding that if we needed the IV again, and if it clotted, we may need a new one placed. With the IV clamped off and disconnected, and a backpack for feedings.... Ian was free to walk around without poles or attachments. He loved this.

He was back to his normal “social” self....... at least for a while. He was flirting and schmoozing the nursing staff. He enjoyed wagon rides and the playroom. He started back at half strength feedings, mixed with Pedialyte. 



Ian was getting ready to progress to full strength overnight; however, his schedule would be more continuous than before. He ran a four hours on and two hours off schedule until morning. Then, we began trying two hours on and four hours off. this was in hopes of trying a regular meal schedule of eight hours the next night.

He rested well that night and sounded clearer in his lungs and was managed pretty well with OTC Tylenol for the pain....... a major trooper for the expected level of pain during that stage of healing.



Wednesday, October 24th

Ian had another pretty good day. He was up early, but slept for over six hours in a row. He also only had two retching-coughing incidences in the last 24 hours.

He was initially struggling to get everything moving after the laxatives stopped. Sounds strange, but the cramping and discomfort, and being without food for 48 hours makes it even harder to resume normal.

Once the day was going, we were told to get Ian moving around the hospital. We ventured downstairs and wandered around the lobby. Ian instantly made friends with everyone. Such a cutie. They even have a little courtyard area that we were able to walk through. Ian sat on a little bench and stopped at each stepping stone, waiting for Nana to count them for him.

We were able to get back on his “normal” at-home feeding routine by the afternoon. That night was his first at-home routine overnight meal. He seemed to be tolerating the food well enough...... that is to say, the retching seemed to be focused on the throat recovery issues at this point. Before each coughing-mild retching episode, Ian had lots of thick mucus in his mouth. This forms from his lack of swallowing and spitting..... as well as the refusal to drink anything. Keeping the mouth and throat moist would help him tremendously...... But I digress.

After speaking with the doctor, she recommended a urine sample. Ian has always been “very difficult” to get a good blood pressure. They are usually high. He is unhappy when they take it, which doesn’t help...... but even when he is asleep, they are high. It has never caused concern before (to clinicians...... I have actually inquired the the RNs and techs a handful of times over the last year). She wanted to check for kidney functioning, since that is a key organ that can indicator a cause for high blood pressure. Collecting a urine sample for a two year old boy is quite the chore. She mentioned the best collection would be to leave him without a diaper on the bed and wait for him to pee and then catch it in the air....... begin laughing......... now........

Ok, are you done? Since this was NEVER going to work, we had to result to the urine bag. Placing a bag around a two year old’s penis while the outside is attached to his skin with a circle of strong adhesive is not what I call good medical technology. We did this once before at CHOP and Ian was no dummy. He held out for three and a half hours before he peed. This time, it only took about 10-15 minutes. Removing the bag is the worst part. Fortunately, our nurse was fantastic and did an excellent and practically painless job of removal.

They looked for proteins and other possibly elevated levels. They also did a four-point blood pressure check which includes taking four BPs one right after the other. Ian hated this. They were high for his age, but not terribly high seeing as though he was crying for some of the time and in a hospital setting. We will follow up with that procedure again at the pediatrician’s office.

Ian continues to enjoy his VECTA..... His super cool sensory machine with lights, colors, sounds, smells, and tactile toys. We call it his nuclear reactor. There are no other children his age on the floor that wanted to play with it.... so it has been in Ian’s room the whole time. Sometimes we left it on overnight since the white noise and colors were soothing for him. 

Ian's "Nuclear Reactor" changes colors and has bubbles and fish



He had fun in the playroom and took wagon rides around the floor. He especially has enjoyed watching his DVDs and pushing the buttons on the bed...... mostly the nurse call button..... sorry RNs! We even placed tape over the bathroom door latch since he has been playing with it. I can see him now...... pulling the lever door closed from the inside and pushing the lock button! No thanks! 

Ian can tell Ian missed his toys and bedroom, and all of his friends at preschool. He certainly had cabin fever and wanted fresh air badly.  Later in the afternoon, Ian was even able to slip outside into the courtyard and get some fresh air.

Having fun outside

That night, we were even able to get Ian to suck on a popsicle for a few minutes.  It has been 9-12 months since he has done that.

Mmmmmmmmm, orange!



Thursday, October 25th

Ian was able to come home Thursday afternoon. We found out the results of the urine test and all was normal. The doctor was also not concerned about the elevated blood pressures in the 4-point check. We will be following up with the pediatrician in the future about those. Thankfully, as it is now, there is no concern about Ian’s kidneys or cardiac issues with blood pressure. They were able to get one good reading while he was sleeping.

Ian was to the point where the worst phase of recovery is winding down. His throat was very sore as things continued to shed and sensitive scar tissue is exposed. He had very copious and thick saliva, which he will not swallow. As a dental hygienist, it made me cringe to see his mouth that way. Thanks to bulb suctioning (which I seem to only be permitted to do since I am a “professional suction-er” haha) and wiping with tissues..... we are still trying to stay ahead of the game. His throat is very fragile now and suctioning poses potential for trauma. Thankfully, I have years of suctioning experience, LOL. There is a lot of throat clearing and gagging-coughing on the mucus. I wish he would drink more liquids to keep his saliva thinner.

He is back to rotating Tylenol and Motrin....... but we watch him closely with motrin. He is much happier sleeping in his own bed. He smiled when he went to bed tonight and wanted to get right into his bed. He also thoroughly enjoyed a bath. The last bath was Sunday and he was beginning to smell like that week-old bandaid adhesive........ you hospital mommas......... you know the smell. It covers them! He did spend some time playing with his toys and watching Sprout, but he mostly wanted to love-on and wrestle a bit with daddy.

He gave lots of hugs and kisses today, feeling good, or bad. Hopefully he will rest well the next week or so and be fully recovered. We were planning to take him to preschool for an hour or so to see his friends and play a bit.



Friday, October 26th

Overall, Ian is had a better day today. While he awoke with the same coughing of icky and thick secretions which he refuses to spit or swallow, he has been happy. The time period did not last as long and was less severe. He seems to be making progress everyday.

After he did his coughing thing this morning, we got him ready for the day. He was extra tired since the Amoxicillin antibiotic is causing him abdominal cramping. He has been waking four time a night or so, holding his belly. He looks so sad. Since he had laxatives continuously for 18 hours to cleanse his impacted bowel, his body is already sensitive. That type of cleanse is usually not indicated for children of Ian’s age and weight. Impaction is uncommon in small children.

Ian seemed in good spirits, so we took a trip into preschool. He was sad and a little cranky about the trip, but had a great time once we were there playing. I slowly slipped out and returned two hours later. He had a great short school day for his first day back after surgery.

Ian’s ENT also called this morning. The pathology reports were positive for Staphylococcus aureus. This is a major component of Ian’s extremely inflamed and enlarged tonsils. This infection has most likely been there for months. Since they were extremely large in April....... I’m guessing six or more.

Ian is two days away from finishing the Amoxicillin. He will now be taking Omnicef (Cefdinir). Ian has a very difficult time with antibiotics. He has taken this successfully before without intense GI side effects. The ENT decided to try this route before trying a “new-to-Ian” antibiotic during this fragile time. He is hopeful that the tonsillectomy removed all of the infection. Tom and I have suspicions since the bronchiolitis incident a few weeks ago.

Viruses almost exclusively cause bronchiolitis and staph aureus is a bacterial infection. Staph aureus can also cause pneumonia (bacterial pneumonia). One was most likely a secondary infection to the other. With Ian, you never know. Regardless, they both seem to be on their way out. Ian’s only large troubles are when he wakes up, or about 20-30 minutes. As the days go on, that will hopefully dwindle as the healing continues. 




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This was Ian’s eighth hospital admission in 2012 alone. We figured out if you count the NICU “admission,” Ian has totaled twelve admissions and spent over 100 days inpatient in the approximately 680 days of his life. While I know many children who have spent considerably more time inpatient than that, it always seems like too much when it is your child. When you think of it as right around 15% of your life, it puts it into perspective. Especially since each inpatient day is supposedly not considered a day in development. In theory then, including the prematurity, Ian would be around 25 weeks behind in development. When you look form that perspective, he seems to be doing SUPER-DUPER developmentally, even though his “age” shows a delay in some skills.

It was hard for us to witness, as always...... but, it's worse when others judge your decisions. We try to keep quiet sometimes because someone always has an opinion to throw in...... bottom line...... IT SUCKS..... ALWAYS! There is never a good option and none of the choices make us feel happy. Almost all the choices include potential for pain, or problem worsening before improvement.

Tommy and I are tired, but cannot imagine what it must be like for Ian. We stick together as a family, have lots of snuggles, and try to keep our cool. We have discovered nothing gets done when you panic. Ian is where he needs to be and is in good hands. Right now, Ian is still in a painful stage of recovery. This is when the scabs are shedding and the new, sensitive scar tissue is being exposed.... no fun. Hopefully, each day will be progressing more and more.

We hope slowly getting Ian back into his fun activities will help him readjust after discharge. I always wonder if he thinks we are going back after we have come home. He seems to know the hospital setting instantly, but I hope he knows that coming home means being home. We never know if and when the next return will be........... but I hope he knows that home is a safe place where he can simply be a little boy who loves to play.

A special thank you again to everyone for tuning in, listening, and being there for support. Our little boy has people all over the world routing for him...... and we wouldn’t trade him for anything!!!