Vandy 6/26-6/29

Tuesday:
Will didn't fully wake up until almost the afternoon. He had so much anesthesia Monday that it took him a while to sleep it off. Overnight was pretty uneventful. Fevers continued as expected; they weren't going away immediately. His pain was being controlled with morphine.

Will says, "What in the world happened to me?"

Realizing that we weren't leaving the hospital for a while, JT and I decided to go home and pack some more stuff because we were out of clothes. Gram and Gramps came to sit with him while we were gone. We got home, washed 1 load of clothes that we absolutely needed, took showers, and repacked. I called to check in and Gramps said that Will had vomited a bunch of green stuff. Will has NEVER thrown up. This must have scared him to death. We couldn't leave right away because we we're waiting on clothes to dry. It was so frustrating that the one time we leave together for a long amount of time (and it was only about 2 hours) something bad happens. We finally got back to hospital and Will was looking pretty comfy in Gram's lap. He obviously felt better after getting that stuff out of him. The residents showed up not long after we did. The nurse had paged them when Will got sick. Gram was trying to explain the color and quantity to them, but Will didn't think they were getting the picture, so he chose to demonstrate again for them. It was so much and such a horrible color! The residents said it was a product of an empty stomach (he hadn't eaten in several days), pain meds, and anesthesia. The nurse gave him some nausea medicine and we were just going to watch him. He seemed to feel better again after he was sick. An x-ray was done that night to make sure the was no bowel obstruction (seriously, bowel obstruction even being considered is just a horrible thought).

Wednesday:
Vomiting happened again at midnight and about 7:30 in the morning. The x-ray showed that his intestines were essentially asleep. Congrats Will - you just earned yourself a NG tube! This tube goes through the nose down to the stomach and can be used for suction or to give tube feedings. We were using it for suction in this case. It was recommended that we leave the room for the placement, so we did, and walked far enough away to not hear the screaming. Dr. Thomas said he actually did pretty well with it and he seemed to have instant relief as soon as it was placed.

It wasn't very easy to hold Will at this point. He had so many tubes attached to machines and the wall that it was nearly impossible to get him situated. We stayed like this most of Wednesday morning. 

JT went to the auction this morning and Gram came to stay with me. We just hung out in the recliner all morning taking turns holding him. With the tube in place, he still couldn't eat or drink. Because it had been so long since Will had anything to eat or drink, we began discussing a PICC line with the doctors. This is a more permanent IV that would be a way to give nutrition through the veins since his gut wasn't working. It would involve another sedation. How could we avoid this? Will's intestines had to wake-up, so we were waiting for him to pass gas. So we waited, and waited, and waited. Nothing!
Our good progress for today, no fever in past 24 hours. Yippee!

Thursday:
No fevers overnight. We did another x-ray that showed some improvement in intestines, but not significant enough. We were scheduling PICC line for 1:30. We signed the consent form around 11:00 and then Will and I were chilling out in the recliner. I felt some rumbling and sure enough he had a dirty diaper. Yay! Never in my life did I think I would be excited about a dirty diaper, or be posting about it! The nurse paged Dr. Thomas and he came up to the room as excited as we were. Now the dilemma...get the PICC or assume we are good to go and skip the PICC and possibly wait another couple of days for nutrition for Will if this was just a fluke? Our choice was no PICC unless we absolutely had to. We didn't need it for IV antibiotics because we could go home on oral antibiotics. Dr. Thomas felt like Will could improve on his own so we cancelled the PICC. Fingers crossed that we made the right decision! Will is in control now.
Pops and Nonna finally got here this afternoon. Will had been pretty fussy today. He was really acting hungry but we couldn't feed him yet. He sneezed and his NG tube came out a little bit. The nurse came to tape it back which required us to hold him down. This time Will decided he wasn't going down without a fight. I was on the verge of a breakdown anyway, and I just couldn't hold him down for torture anymore. Luckily sweet Lauren showed up right then and we escaped downstairs to cry, laugh, and just get away for a minute
Dr. Thomas came by this evening and decided to get the tube out so we could try to get him to eat on his own. That all went smoothly (tube was out in just a second). Will ate a few ice chips. Yay! 

Friday: 
Restless night. Will can't seem to get comfortable or maybe he is just starving and having hunger pains. I hate giving him narcotics, but I don't want him to be in pain either, so I usually give in to the pain meds. 
Today's goal is to feed Will! He refused water this morning as always, wouldn't eat jello, but ate one or two ice chips. Then he was done; back to refusal. JT got him a Popsicle and crushed it up. Will ate half of it. Yay, finally progress! 
Pops and Nonna came back by before they headed back to Chattanooga. NeeNee came by and we walked around the hospital for a bit. Will was too tired to pay attention to much so we came back to the room and he went to sleep. Gram and Gramps came by and Will became playful. JT and I left hoping he may eat for them, but no luck. Then a stroke of brilliance (from someone other than me of course), try an actual bottle, not sippy cup. Will hasn't used a bottle in over a month, but he of course couldn't get it fast enough. Can't wait to break him of this habit again! But honestly, I don't care what it takes, I am just glad that we are eating and drinking. He has had some Cheerios and piece of banana too. I think it is safe to say that we are on the mend! Possible discharge Sunday or Monday is all continues to go well!

Not a great Monday - Vandy 6/25

After a wonderful Sunday with Will coming back to his old self, everything changed Monday morning. He was back to refusing to eat or drink. Blood cultures were negative. Fevers still going around the clock. Our pediatrician came in and we discussed the CT scan that had been mentioned earlier. JT and I just needed some convincing and education on what this would show that the ultrasound didn't show. We don't want to run any tests that aren't necessary. The CT scan is a much better picture and if there is something going on from previous surgery, this is how we will find it. Dr. Huss recommended that we do it, so we agreed.

JT and I questioned ourselves often about making the right decisions. Were we just first time parents being crazy about a fever? Do we need to just go home and stop torturing the poor kid? Tylenol and Motrin would eventually take care of it, right? What are we even looking for anymore?

Back to being lethargic

We went to the prep room because Will would have to be sedated. The plan was to give him pentobarbital by mouth. Within 20-30 minutes it should put him in a sleep where we could literally hold him upside down and he wouldn't notice. It worked pretty quickly so we took him to CT machine. As soon as we laid him down, he woke up. Back to prep room to see if he would sleep deeper, and then we tried again at machine. Guess who started moving! They gave him another half dose. Guess who still wouldn't go to sleep! After almost 2 hours of this nonsense, we moved on to plan B. We took him to the scan room, laid him on machine, and Will said "uh-oh". How appropriate! They gave him propofol through his IV. Nite, nite Will! While they had him under, they put in a larger IV so that we could start attempting to get blood out of it instead of pricking him in crazy places. He was brought back to our prep/recovery room sound asleep. First thing that I noticed was that he now had a "no-no" on each arm to keep him from pulling out IVs. He was not going to be very excited to wake up to that!

We were in the recovery room for a while because the sedative was apparently in full force now and Will was not waking up anytime soon. JT's phone rang; his mom was calling. (NeeNee came to the hospital during her lunch break and had taken off the rest of the afternoon. She was up in our room waiting for us to come back.) JT answered, but it was a resident in our room looking for us, not his mom. I could only hear JT's side of the conversation and watched him suddenly break down in to tears. Will was going back in to surgery and the doctor was on his way to talk to us.

 NUMB! There is no other word to describe what we were feeling. Surgery again? What was going on? On one hand I was thrilled that we finally had an answer, but on the other hand I was hoping for something simple like an ear infection. CT scan showed some bowel abnormalities so they were assuming bowel obstruction, but not 100% sure. No doubt there was something there that needed to be looked into. Dr. Thomas was as upset as we were. He was so confident that the hernia surgery went well, he couldn't believe this was happening. Since Dr. Thomas is a urologist, a general surgeon would have to perform this surgery since it was in abdomen. Dr. Thomas was going in too though to make sure that hernia was not back. We talked to different residents, but I honestly don't remember much. Basically we were hearing that "Will is going back to surgery and we're not exactly sure what we are even fixing". We were told the surgery would be as soon as an operating room was open. That could be a few hours though. We were taken back to our room and Gram and NeeNee were there. Our nurse Mary was as comforting to us as possible.

Finally surgery was planned for 7:00. We were taken down to pre-op then and stayed there for a while. Dr. Thomas came by often talking to us and even pulled up the CT scan and went through it with us. He explained why they weren't sure what exactly the problem was, but it was definitely evident that something was wrong that most likely involved the bowel. Anesthesia came by and we had the same doctor as from hernia surgery. This was good since he remembered the difficulty they had the first time. Then we met Dr. Blakely who was the general surgeon. He was very honest with us saying that he was hoping to fix whatever this was laparoscopically, but he wanted to prepare us that he would most likely have to make another incision. The plan was to take him back and put in a camera to see what they could, then they would call us with a plan. They finally got started about 8:30. We went to the waiting room and they called after about 20 minutes. They could not see enough with just the camera, so they were going to have to cut him open. We were expecting another call in an hour. It was almost 10:00 and we looked up to see both Dr. Thomas and Dr. Blakely had come out to meet with us. We went to a private room to talk. They started out saying that they were done and it was not a bowel obstruction. Over the next 3 seconds (felt like and hour) my mind was racing over all the other possibilities they could have found. They had found an abscess the size of a racquetball! Everything done from the hernia surgery was still in tact, this was just a fluid collection that may have been aggrevated during that surgery and bacteria was introduced to it and formed this abscess. Random! Even more random is why he even has the fluid pockets (another was found on his left side, just not infected), but that will be looked into at a later date. It was behind the intestines, so the intestines were pushed forward and that is why they looked so distorted on CT scan. No one is sure why the abscess didn't appear on the scan (or the ultrasound we have Friday night) and they are actually going to look in to that. (Will is going to be a case study I imagine.) What great news! He had to be cut open which is no good, but the outcome was better than expected. Dr. Thomas looked as happy and relieved as we did. We got to go to recovery to see him a little before 11:00 and he was still sleeping. He had an IV in his right leg. He also had a drain placed from his abdominal cavity. This will be removed in a week or so. We got back to our room and could not wait to get some sleep so this Monday would be over!

Oh, while in the waiting room I saw a table of children's books. The one that cause my eye was "Alexander's terrible, horrible, no good, very bad day". That just about sums up Will's day!

Vandy - 6/23-6/25

We got to our room late Friday/early Saturday morning. At nurse's vital sign check, will had a fever of 104. We wrapped him in wet cloths because the nurse said this was a quick way to bring it down faster along with meds. Poor little kiddo! There is room for JT and I both to stay here, so we sleep when Will sleeps and take care of him the rest of the time. The nurses have all been amazing! We met with the urology resident again and our pediatrician's partner Dr. Hawkins. Dr. Hawkins did a great job explaining to us why we were watching fevers, discussing other tests that may be done, etc. Basically we needed to get some blood work, get him eating and drinking again, and of course no fevers. There was trouble getting blood out of his IV, so he had to have it drawn from his other hand. JT and I lost it as we were holding him down listening to him scream and cry. Antibiotics were started (vancomycin and Zosyn) to cover anything that might be causing these fevers. Blood cultures weren't showing anything and more blood work was needed because the last blood draw clotted in the lab and was useless. This time they took from another spot in his arm.

We discussed having a CT scan, but no one was really sure that this needed to be the next step. Will would have to be sedated so that he could be perfectly still, and no one wanted to expose him to any radiation that isn't necessary. Fever continued all day and night. In the middle of the night, more blood work had to be drawn to get his vancomycin level. It had to be done so we were ready for them to find another spot to get blood. They chose his scalp. That's right, I said his scalp! The nurse said the scalp is actually usually not as painful and it bleeds well. JT and I held him down and of course he got upset, but he does that when any stranger touches him. He jerked and screamed when they put the needle in him, and once again JT and I lost it. We said right then that we would not allow any more blood draws until they could figure out a way to get it through IV. Sunday morning we made this known to everyone, and I think everyone was very understanding and agreeable to it.

Sunday was a day of rest for Will...well deserved. We had a glimpse of our happy baby back on Sunday afternoon. He played airplane, said "Gie" and was just more his normal self. We walked around the hospital and went to the playroom. The kids can ride in wagons or little cars. The IV had to go with us, so we called it Will's "friend".

Will didn't find this car to be nearly as fun as I though it would be.  He was so clingy that he just wanted to be held.

At the beginning of our hall there is a statue of a black lab. Will pet it and played with the collar. I am sure he was wondering why this dog was so nice and wasn't running away like Maggie does! 

"Gie"

He wasn't as lifeless. He had enough energy to hold his head up and even stand up a little. He also ate 4-5 ounces of yogurt. After refusal of all food and drink, this was huge. We were excited to see the doctors in the morning to report this great change.

 Monday wasn't a great day...

First trip to the ER - 6/22/12

After Will's surgery, he bounced right back to himself the very next day. We noticed though that he didn't quite have his full appetite back, but that was normal after surgery. Sunday night Will had a fever,and it continued on Monday. He was still his normal happy self and played like normal. Fevers continued (103-104) and Tuesday I called the pediatrician to see if we should come in. We did and decided that he had a virus. Lab results were all normal, so I was told to watch for a rash and fever should be over 24 hours from that. He started sleeping a lot, but being sick it seemed normal. Hope was with Will Wednesday and Thursday and he continued to sleep continuously and not want to eat. Wednesday the rash appeared so we waited for fevers to end. They didn't. 

Viral rash as expected

Friday morning I had a sick baby that couldn't do anything but lay wherever I put him. I called pediatrician's office because there was no way that this was going to get any better.

Will was so lethargic. He did not move from this spot until I picked him up. Normally he would try to follow me around the house.  He didn't even get upset when I left the room. 

Back at the pediatrician's office the fever continued. We did blood work again because viral infection should be gone. White blood cells were elevated and Dr. Huss could find no reason why - not strep, not an ear infection, chest sounded clear. Because of the recent surgery, he called the surgeon to discuss possible infection at the site of surgery. Although site infection was very unlikely, Dr. Huss told me to go home, pack some stuff, and go to Vanderbilt ER to most likely be admitted just to get this all checked out.

Vanderbilt ER:
We got to Vandy around 2:00. It was horrible for all of us from the beginning because they started an IV in Will and cathererized him. JT and I left the room but could hear him screaming and crying. So we cried too; nothing worse than your baby in pain! The resident that was in surgery with Will met us there. (Dr. Thomas was in clinic in Jackson.) She didn't see any cause for alarm, but we scheduled and ultrasound. Will did great through it, even napped a little bit. Ultrasound showed that everything was fine from surgery from what they could see. There was still a lot of inflammation and swelling, so everything was a little distorted. The resident prepared us that there was possibly a new hernia that she saw, and we may need to go back to surgery. It was going to be reviewed by radiology and another Urologist and we would know soon. We were very scared, but we got good news that it was only inflammation on vessels that they saw. No surgery yay! But still no answer to these fevers. NeeNee came by and Will really perked up when he saw her. Then we went for a chest x-ray which also showed nothing.

In the ER

We were told that Will would be admitted for observation overnight, but may or may not get moved to an actual room. We were in a tiny space with only 2 chairs. If we wanted a sleeping chair, there was only room for 1, meaning one of us had to go home. That wasn't an option to us; neither of us was going to leave. Right before midnight we got moved to a real room. It was one of the new rooms and felt like a mansion compared to where we had been past 10 hours. The nurses were trying to familiarize us with the room, microfridge, visitor hours, etc. JT even joked that there was no need for the info because we wouldn't be there long.

Will's Surgery

Will had his surgery on June 7th at Vanderbilt Children's Hospital. This was to repair an inguinal hernia and hydrocele near his right testicle. I don't want to get into much medical detail with these terms, but these occurred from birth. (Let me know if you want more details and I can give them to you. There is also great info at http://www.webmd.com/digestive-disorders/tc/inguinal-hernia-topic-overview.)

We had to be there at 6:00 a.m. so we got up early and loaded Will in the car at 5:30. He was in a good mood but said "uh-oh" a few times as we drove out of the neighborhood which was kind of funny.

We got to Vandy right on time and got registered. Will played around crawling all over chairs, looking out windows, and making friends with anyone that would pay attention to him. (Side note: There were a LOT of people there, coming in all day long! Amazing how many surgeries they do, and how many kids are really sick.)

We got called back to pre-op and Will thought we were at a hotel apparently, because he instantly wanted to bounce on the crib/bed. He got some cute little Vandy clothes to put on, and then all of the doctors and nurses started coming in. He had a blast with all of the attention.

Luckily IV's and stuff were done away from us. The anesthesiologist came in and said that the plan was to put him under gas, put in IV, then do a caudal injection which is basically an injection in his low back to produce numbness in abdomen and legs (like an epidural). The surgeon came in later and met with us was great about playing with Will first instead of just poking at him. JT and I discussed at the last minute that we hadn't mentioned the hemangioma on Will's back - this is a collection of blood vessels that he has had since birth that is a big strawberry mark on his back. We were worried this would be an issue with the caudal injection. Luckily the last person to see Will was the nurse anesthetist so we mentioned it to him and he said they would all discuss it and probably come up with another plan. It wasn't necessary to do the caudal, it just is better for Will's pain control after. (They ended up not doing the caudal because they didn't want to take any chances.) I was very worried about them wheeling Will out of the room away from us because of his crazy separation anxiety. The nurse anesthetist had been playing with Will getting him to come to him and then letting him go the whole time we talking. He said the next time he came to him they were going to walk off. We needed to give them a minute to get where he couldn't see us and then we could come out. I started crying - this kid has turned me in to an emotional person that I never was before. Before I knew it they were gone, and I didn't here any screaming. Yay Will!

JT and I went out to waiting room. The surgery was supposed to last 2 hours and someone from the team would call us after an hour to give an update. I got the call a little over an hour later and it was the actual surgeon. He said everything was fixed and going fine, but he was asking for permission to make a second incision to insert a camera to look around and make sure nothing was missed and there were no problems with the left side. We were okay with that. After about an hour, we were brought in to a meeting room with the surgeon. Everything was done and Will was headed to post-op. He discussed the entire procedure with us, even drew some pictures so we could understand better.

Soon after we were allowed to see him. He was just waking up when we got back there and seeing him was an amazing feeling! JT said it was like seeing him for the first time all over again. Will was not a happy camper! His hair was wild all over the place and he looked so pale. They were trying to give him some Pedialyte and handed him to me so I could try. He sucked the bottle down fast, but then his oxygen levels would drop way too much. He was very uncomfortable and had a raspy voice/cry and cough. The nurse told us they there was trouble intubating him, and it took 4 tries before they got the tube down his throat. The nurse anesthetist told us that if he needs surgery in the future, we need to let them know to use a half size smaller tube than planned because there is a part in his throat that is larger than normal. After about an hour of fighting his oxygen levels and trying to calm him down with no luck, the nurse decided to give him Fentanyl (strong pain med) to put him back to sleep and hope for a better wake-up the second time around. We weren't thrilled with the idea, but he had some sort of delirium that Fentanyl can help. He slept great for at least 30 minutes then we started trying to wake him up. This time he woke up his normal self and didn't need oxygen. Yippee!

He still looks so pitiful here, but this is a great improvement from first seeing him. The thing on his arm is called a "no-no". It is covering his IV so he can't pull it out. He had already tried when he woke up the first time.

We stayed in PACU for a little while trying to get him to eat and drink and then finally we were getting ready to go home. IV and everything came out, then we just had to get him dressed. I changed his diaper and nurse got a little panicked because his right side scrotum was swelled and discolored. She paged the surgeon and he came out and said he was confident it was just fluid, not blood, but he wanted us to stay a few more hours and see if went down. So much for being home by lunch! We moved back to a private holding room and waited. Every time we would get him calmed down and comfortable to sleep someone would come in wanting to check him. We had to undo his diaper and when they touched him he cried in pain. It was awful! Finally the surgeon came in around 4:30 and said we could go but he wanted to see him next week.

We got home around 5:30 and put him to bed and we passed out too in the deepest sleep we've ever had. We were expecting a rough night with Will in pain, but we actually had to wake him up to change him and feed him, and then he went right back to sleep until 5:30 a.m. He was such a trooper!

He has had a great recovery and little pain. The swelling is still there, but the color is better, and we even think the swelling has improved some. Here is a picture of him all bandaged up. 

We are so thankful for all the thoughts and prayers! Will did great and was back to his normal self the next morning.