Gram and Gramps wanted to take Will to a Pumpkin Patch. So we went to Lucky Ladd Farms one Saturday afternoon. It was so fun! There was a petting zoo, hayride, huge slides, corn maze, and of course a pumpkin patch.
Will loved the petting zoo! I thought this lamb might come home with us.
It was lots of fun! We will definitely go back next year!
Halloween 2012
Pumpkin carving:
Will was completely uninterested. He preferred to play with the ladder, lawn mower, and other objects in the garage. When JT finished the first pumpkin, I gave Will a flashlight to hold inside of it. It lit up, and so did Will's face!
I requested a "WILL" pumpkin and JT did such a great job on it. So proud!
Costume:
I had a couple different ideas for his costume this year. Options were:
The old man from the movie "Up" - Mom found this costume on pinterest and it is absolutely the cutest.
Alligator - He loves the song that Karen sings to him about monkeys and alligators. He was a monkey last year.
Pirate - He likes the Disney show Jake and the Neverland Pirates.
Skeleton - Gramps bought Will a skeleton balloon at Publix that we named "Bones" and Will loves it! He plays "head and shoulders, knees, and toes" with it.
So then I started looking for costumes and the skeleton one was so cute! The little boy model even looked like Will.
So time for my confession of my "Mom FAIL" moment...
I washed Will's costume in the washing machine. The tag clearly said "hand wash only", but I thought that was simply a suggestion, not an instruction. So I opened the washing machine to a polyester/applique mess. Good grief! It took 30 minutes and 20 pieces of lint roll paper, but I finally got it all looking pretty again. It's just a little fuzzy now.
I had to work Halloween night, so JT was in charge of Will. He got him dressed in his costume, but Will refused to wear the hat. Our old neighbors came by to Trick-or-Treat in our neighborhood, so Will got to play with Maddy. JT said Will made it to a few houses, but he didn't really get the concept yet. Next year will be much more fun!
We have now seen/met the specialists that we will be dealing with at Vanderbilt Children's. We will continue to see Dr. Thomas (urology), Dr. Neblett and Dr. O'Neal (pediatric general surgery), and Dr. Pearson (neurosurgery) every 6-12 months for follow-ups on Will. JT and I have been a little disappointed at these doctor visits when everyone wants to tell us how "impressive" and "remarkable" Will's MRI is, but no one wants to do anything about it. We have finally realized that no one is doing anything, because no one really knows what to do. Unfortunately this is something that there are no clear answers for. We will just continue to watch Will as he develops and grows and pray that this is an issue that we won't have to deal with again. The malformation involves veins and possibly some lymphatic system. It does not involve any arteries and this is a very good thing! (If you Google vascular malformations, AVM comes up and doesn't sound too good, but Will does not have that!) Because arteries are not involved, there is less likely to be a problem in future. For now, no one thinks that surgical intervention is needed since Will has no symptoms. This is great because surgery would not be easy and Will's quality of life would probably not be so great - they would most likely remove his colon/rectum if the vessels were removed because they supply the blood flow there.
Potential problems that we are watching for:
- Neurological - seizures, numbness of extremities, weakness, paralysis - Dr. Pearson showed me the MRI of spinal cord area and everything looks great. This malformation is close to the end of the spinal cord, but not touching it. So hopefully none of these things will ever happen.
- Blood clot - This would most likely occur in his right calf or foot, not in abdomen. He would be treated with blood thinners if needed.
- Vessels go deep into colon and rectum, so we are watching for any blood or severe constipation. Never been an issue so far.
- These vessels kind of put his bladder out of place. Dr. Thomas is confident that this will not be an issue unless everything gets bigger and starts pressing against it. He will keep an eye on this with ultrasounds every once in a while.
As we always tell everyone, Will is FINE! He is growing and developing exactly as he should. I think the doctors all agree that this is going to grow with him instead of him growing out of it, but it doesn't necessarily mean that he will have problems.
Hopefully this blog can now go back to "fun news on Will" instead of "Will's Medical Chart".
Hope just had her first music video debut this past week. It is awesome! She has worked so hard and we are so proud of her! Check it out for yourslef.
So if you are wondering who Hope is, she is Will's nanny. She started watching Will when I went back to work when he was 3 months old. She was the second person that I interviewed and I knew right away she was my pick. I had some other interviews though and of course JT wanted to meet her. Her schedule was flexible to match up with my crazy work schedule. She loves kids and had daycare/nanny experience. Most importantly, I could tell from watching her interact with Will in the first few minutes that she would love my child. Oh, and she liked Maggie too! Fast forward to now and you will see that Will is crazy about her! He knows that he is going to have a fun day when Hope shows up. They go out to eat, play at the park, make frequent trips to Target, take Maggie for walks and play ball, read books, and all kinds of other fun stuff. I think when they are at the house that they listen to music and dance all day, because that is all Will ever wants to do! We adore her and are so thankful that she was brought into our lives to help us raise Will. She has taught him so many things! Anything adorable that Will does was probably taught by Hope - pointing to his nose and tummy, sign language for "more", making a "cheese" face for pictures.
Here is Will checking out Hope's video. I love his "oh" face and then pointing to her. Will, is that Hope? Will says, "yeeeeaaaahhhh"!
So we want to spread the word about our super talented Hope! Check out her website at www.hopenix.com. I know she has a bright future ahead of her, and we hope that all of her dreams come true.
Hope, thanks for EVERYTHING that you do for us! We can't imagine what we would do without you! It's only a matter of time before you get famous and leave us someday, but just remember that we want to come hang out on the tour bus sometime!
Weight - 27 lbs
Height - 33 inches
Will finally made it above the 50th percentile at this check-up. I think he is about 70th percentile now.
Food:
He eats a lot of the same stuff over and over again, but that is my fault because I never have new ideas for him. He loves pancakes, waffles, turkey sausage, peanut butter toast, cheese toast, turkey sandwiches, cheese, chicken nuggets, mac'n'cheese, yogurt, bananas, and apples. Sometimes he will only eat one thing at a time though, so I have to give him sausage by itself, and then give him a pancake when he finishes it. If I put both on the same plate, he will only eat one thing. I would love to complain about this, but we all know that I am the pickiest eater in the world! We try to give him bites of our food, but he shakes his head "no" and ignores us. He did eat green beans the other day, but only because I gave him a plate full with nothing else on it. When I added chicken nuggets, he didn't touch another green bean. He loves milk and water! I've tried to give him some juice, but he really doesn't like it. I'm giving him diluted flavored water now. I know it is great if he doesn't want juice, but I think he needs some flavor in his life!
His favorite food time of the day is morning cereal time with Daddy. JT brings his bowl of cereal wherever we are and Will RUNS over to him. Will then sticks his finger in the bowl demanding a bite. Watching this is one of my favorite parts of my day!
Mobility:
He is everywhere, and I mean everywhere! He walks, almost runs, and climbs. He loves to climb - steps, ladders, whatever he can find.
Social skills:
We have seen a big improvement over the past month or two of Will's reactions to strangers. He is still very cautious and it takes time for him to warm up to new people, but he gets there. We even made it through an entire church service for the first time with Will in the nursery - he even had a good time! I believe I owe this all to Mother's Day Out and Hope getting him out and about meeting people. I know he is getting older and probably getting better socializing anyway, but I really think that being in a school setting once a week has really pushed him for the better. Hope regularly takes him to Sweet CeCe's where he apparently is the greeter to everyone there.
Language:
He isn't talking much in English, but he has conversations with us, especially with JT, in what I like to call "Will-ish". He understands how to have a conversation back and forth. He says "Mamamamama", "Da", "gie", and "hi". He knows what we are saying and he will do what we tell him/go where we tell him to go. He uses sign language fro "more" and "all done".
Toys:
He loves his superhero car that he can push or ride. He is also really getting into his toy cars and trucks. He pushes them around and says "vroom". Where did he even learn that? Gram says that little boys have a "car gene" that they just know these things.
He is really wanting to play with Maggie more and loves throwing her tennis ball, He also loves throwing any other item that he gets in his hand, so we are trying to keep that to a minimum.
He threw his cheerios onto Maggie's back. Pretty good shot,
especially since she is a moving target!
He loves cords - electrical cords. This is not good! He is constantly unplugging our phones.
He also has a new obsession with the iPad. He has his own folder on it which he knows how to get to. He loves the "Cat in the Hat" book that is interactive.
He is still big on routines and patterns. When we go to Publix, he knows that he gets a cookie at the bakery.
Excuse me, I'm here for my cookie.
Thank you!
If we go by the pharmacy, he gets to say "hi" to the pharmacist. If he comes to my pharmacy, he demands a band-aid - he has watched me give shots several times, so he thinks that is all that I do apparently.
He knows when I am getting out the shower that I need my hair towel. He stops whatever he is doing and grabs it and hands it to me. Every single time!
He knows that before bed, he gets "bedtime playtime" which is a couple of minutes wrestling with Daddy. He loves it!
I think that we are going to see Will's independent side coming out more in the next few months. But even as he begins to test us, every day will still be a blessing!
We went to Watercolor for vacation this past week and it was wonderful! We had such a great time together, just the 3 of us.
Tuesday:
We flew out of Nashville to Panama City Tuesday morning. It was such an easy flight - we left at 8:05 and were in Florida by 9:30. That is so much better than driving! We thought Will would enjoy seeing all of the airplanes close up since he is so obsessed when they fly over our house. We really didn't get to see any good take-offs or landings though. Oh well, he still liked just looking at them at the gates. He knew exactly what they were and gave them all his airplane salute. Our flight wasn't full, so we got 3 seats to ourselves (Will's ticket was technically to be in my lap). He sat with me in the window seat and watched as we taxied and took off.
He feel asleep right after that. I kept putting the window shade down since the sun seemed so bright on his face, but he would wake up every time and want it raised back up. He was such a great traveler! The flight attendant gave him his first set of wings. (I remember my brother Kyle always getting these when he flew.)
While we were waiting to get our rental car, Will discovered water fountains. He thought they were hilarious! He is so easily entertained!
We had lunch at Bud and Alley's and had a great view of the beach and ocean. So relaxing already! Then we headed to our new home for the next few days. This year we stayed in Watercolor which is right next to Seaside. (We have always stayed in Seagrove Beach before which is on the other side of Seaside.) I don't know what to say about Watercolor except that is is AMAZING! The houses, landscape, everything about it is beautiful. We were on the 3rd floor of our building which had an elevator.
Will LOVED pushing the elevator buttons and watching the doors open! I expect him to ask for one to be put in our house for Christmas. You'll have a better chance if you ask your grandparents, Will!
The condo was beautiful and had patios on both levels. We had a small view of the ocean, but couldn't really hear the waves crashing. The master suite was the entire second floor and I wasn't sure where I was going to put Will and then I found the spacious laundry room...perfect size for his pack'n'play.
We tried to get Will to nap again, but that wasn't going to happen. So off we went to the beach club pool. This pool is so nice and it overlooks the beach. JT bought Will some "swimmies" (I think some people call them "wings") to go on his arms to help him float, but Will wanted nothing to do with that. Will decided that they would be great toys to throw.
After some pool time we headed down to the beach. I am sad to report that Will HATES sand! He does not want to touch it at all and screams like crazy if you try to put him down. Good grief! He liked being in the ocean as long as he was being held and didn't touch the sand.
We were all asleep by 8:00. Now that is what I love about vacation!
As cute as this is, they aren't really sleeping yet. Will is actually laughing hysterically because everything that Daddy does is hilarious! They always play before bedtime.
Wednesday:
Will woke up early and was ready to play! We put Will in his stroller and walked to our favorite breakfast place in Seaside called "Great Southern". We love their cheese grits! Then we went back to the condo and got ready for some water time. We started out at the beach club pool again and had a great time. JT showed Will how to blow bubbles in the water, and Will was trying to do it too. He would lay on the top step and end up licking the water. Eeww! He loved it though. We tried the beach again, but Will still wasn't touching the sand. JT bought him a shovel and he played with it, but he was sitting in the chair bending over to shovel.
The condo provided 2 bikes for us and we called the rental place and asked them to bring us a buggy attachment for Will to sit in. That was set up when we got back from the beach so we took a ride through the neighborhood.
We stopped at the fountain and Will threw in some pennies. All I had left was a quarter and he threw that in too. He was mad when I ran out; I guess he thought I was going to give him dollar bills next. No way kiddo!
We kept riding and found one of the other pools. This was at Camp Watercolor. It had a "hide and see fountain". Will loved it immediately and ended up soaking wet! We went back home to get our bathing suits and came back to this pool to play for the rest of the day.
Thursday:
We were up early again and went to eat breakfast. Will entertained the people sitting around us. They were from Lebanon and knew somebody that JT knows from work. Such a small world.
We took another bike ride through Watercolor and this time JT took Will. I think Will figured out pretty quickly that Mommy drives safe and Daddy drives like a crazy man!
We went back to Seaside for lunch at "Pickles" and then it was off to the pool with fountains again. As much as he loved this the day before, all he wanted to do now was play with the water faucet and shower. We made our third attempt at the beach. Still a "NO" for Will.
While I was getting ready for dinner, I saw this out of the corner of my eye and ran outside because JT was supposed to be watching Will...JT was watching Will, he was just catching this on camera. I believe he made it up 2 more boards.
Will has become a climber ever since he watched Daddy and Pops climbing the ladder.
We went to the "Shrimp Shack" for dinner and sat on a pavilion on the beach. It was awesome! Then we went and got ice cream. Will loved ice cream!
Friday:
We biked to the Modica Market and got some muffins for breakfast and went back to the beach pavilion to eat. It is definitely one of our favorite spots!
We went back to the beach club pool and Will was finally getting brave enough to jump to JT in the water.
We stayed on the beach a little longer today. JT put a towel down and Will sat on that and shoveled the sand around him. There was a little girl next to us that was sharing her sand castle toys with Will, so he was pretty entertained. Then he caught sight of the birds. And he wanted to chase them...correction, he wanted ME to chase them while carrying him since he still refused to walk on the sand. This was exhausting. I'm glad JT was busy talking and not videoing this!
We decided not to go to my favorite restaurant "Red Bar" and instead go to "Great Southern" for dinner. We have only eaten breakfast there and decided we needed to try dinner. It was packed and Will was pretty impatient. Every time a food tray would come out and pass our table, he would start fuming!
Will says, "Stop feeding all of these other people (that were here before us) and bring me something to eat!" He obviously gets his patience from JT.
We finally got our dinner and it was so good! JT noticed a lot of people in the Town Center of Seaside and blow-up movie screen was there. He couldn't see what the movie was from dinner, but as we left we saw it was E.T. We watched for a few minutes and then biked back home. That will be a fun thing to do when Will is a little older.
Saturday:
We took one last bike ride to Seaside and repeated our new breakfast tradition that we did the day before.
We had to be out of the condo by 10:00 and our flight didn't leave until 4:00. We decided to take our time traveling back to Panama City. We were at the airport early and had to wait for a couple of hours. JT watched the UT vs. Georgia game while Will entertained us by checking to see if he fit into carry-on luggage.
We flew from Panama City to Atlanta and then back to Nashville. Will made friends with the girl sitting behind us on the first flight and they played peek-a-boo the entire time. He was really tired on next flight and was restless. He finally calmed down and passed out.
He slept through the landing, getting off the plane, walking through the airport, and finally woke up when we got to NeeNee's car.
Finally we were Home Sweet Home! We had the BEST time! together! We can't wait for the next vacation!
MRI was Thursday and the report was available to Dr. Huss (pediatrician) and Dr. Thomas (urology surgeon) Friday afternoon. Both of these doctors are great about staying in touch with me and giving me any info that they can, but this is not their area of expertise. They are basically having to figure out which specialist to send us to.
Dr. Huss called me Friday and said that the MRI showed vascular malformation that begins at the end of the right kidney, goes all through the pelvic area, and ends in his right foot. There is also a lot of soft tissue in his pelvic area (basically his butt has soft tissue instead of fatty tissue). The hemangioma on his back is part of this system. He called a neurosurgeon at Vanderbilt to review this because of how close it is to the spinal cord. Dr. Pearson wants to meet with us sometime in the future (not urgently) just to discuss what we would do if there was a developmental problem in the future. Next Dr. Huss called a cardiologist because there is a medication that can help shrink the vessels, but it is a drug used to lower blood pressure and heart rate. So if he was put on that, Will would have to be followed by cardiology. There are no heart concerns now! The cardiologist is part of a committee at Vanderbilt that meets a few times a year to discuss cases of vascular malformations. They are meeting tomorrow (9/11) and have agreed to put Will on the list. I think this is a great! A team of people who deal with this pretty regularly all giving thoughts and opinions. I expect to hear from Dr. Huss on Wednesday about what they say.
Dr. Thomas has contacted a general pediatric surgeon and they are going to review the MRI together again this evening along with the radiologist. Hopefully I will hear from him tomorrow.
Dr. Thomas and Dr. Huss have been communicating with each other. They are working together to make the best plan for us. JT and I feel that they both have a great interest and concern for Will, so even though they don't really have to be involved anymore, they seem to be sticking around. I really appreciate that!
We keep hearing the words "impressed" and "remarkable" when these specialists are reviewing the MRI. The size of it all is apparently what has their attention. Because Will is growing and developing as he should, there is no immediate need to do something about this. I'll know more in the next few days and hopefully have an update then.
I apologize if you have been asking about Will and we haven't given you much info back. It is because we don't know! I have written out everything that I have been told here, but I don't really know what it all means for Will in the long run. I'll keep posting when there is more to tell.
Back to Vandy today for Will's MRI. They are scanning his spine, abdomen, pelvis, and right calf/leg.
Will got a little upset in pre-op when we first got there, but the sweet nurse gave him some toys and then he was his fun happy self. We were in pre-op for an hour at least and Will acted like he owned the place. He was introduced to bubbles which I think he would have played with for hours! He played ball with his new nurse friend and chased around a Hot Wheels car.
Will walked around to the other side of the curtain to see the other child in there. He just had to say "HI!"
First time to play with bubbles. He LOVED them! We will be investing in bubbles soon.
I just had to get a pic of his back side. He was just so cute! The nurse gave him some socks and he kept bending down to check them out.
We met with the anesthesiologist and MRI tech. The plan was to have them take him from us, go to MRI room, get gas mask for quick sleep, put in IV for contrast dye and anesthesia, and then get started. Because of all of the areas that they are getting pictures of, it was going to take 4 hours and we could see him probably an hour after that. 4 hours?!?! That is longer than his surgeries! They took Will around 11:20 and JT and I left the pre-op room. We went to eat lunch and then walked around for a while. We spent the rest of the time waiting.
They called me about 3:30 and said he had just gotten done and was already waking up. We couldn't wait to see him! We could hear his raspy cry when we got to the post-op area - so pitiful! He had drank a little water, but mostly just wanted his "no-no" taken off. I can only imagine how mad he was to wake up to that! We stayed there about 20-30 minutes and then were able to go home. Before we even left the parking lot, Will threw up. I jumped in the back seat with him and we kept driving. He got sick a few more times, but it was just the water he had been drinking and nausea from anesthesia. We really didn't want to call the hospital because we knew they would tell us to come back. We got home and gave him some milk. All of that came back up too. Will seemed to feel fine though. We gave him a piece of toast and no more liquids. He has been fine ever since! We played like usual. Will didn't have his balance back yet, so he was walking around like a drunk, which was pretty funny. He ate a good dinner and is now sleeping.
The report will be ready in 24-48 hours. So we are hoping to hear something tomorrow, but it is very possible it will be Monday.
Our neighbor Karen (aka "Momma Karen" to me, JT, and Maggie and "KeeKee" to Will) teaches the 2 year old class at a church close to our neighborhood. I promised that I would send Will there when he was old enough to be in her class. Since he has so much separation anxiety and needs some socialization with other kids, we decided to go ahead and send him now to the 1 year old class. It is on Wednesdays and Thursdays from 9:30-2:30. JT and I talked about it and decided that 1 day a week should be good enough for him. (I didn't want him to go both days because if those were my days off and he was in school, then I wouldn't have any time with him that week.)
Today was Will's first day. I packed up his puppy dog lunch box and dressed him as cute as I could. I expected there to be a lot of crying, so I figured he should look cute if he wasn't going to act very well.
We got to his class room and met his teachers Brenda and Denise. There are 7 other kids in his class. Will and I played with some toys that he liked and he kind of cried and played at the same time. I decided to make my escape when he calmed down. I made a bad decision and gave him a hug which got him crying again. Next time I know to just sneak out without saying goodbye!
I didn't look through the class windows....I just walked straight to my car and started crying. I have no idea why! I didn't cry when I left him to go back to the work the first day, but I guess he is my little companion now and I don't know how to get through my day without him.
The 5 hours went by fast, but it also felt like the longest 5 hours ever! I went to Zumba, ate lunch, took a shower, and went to the grocery store. It was nice to take a shower without trying to keep an eye on him too. And I got through the grocery store fast without him, but it wasn't as much fun. Maggie moped around all morning. She won't admit it, but she was missing the little guy driving her crazy! I went to pick him up and saw Karen. She said he got really attached to Brenda and had a great day. Yay Will! He ran to me when he saw me, and I almost started crying again. Brenda said he played, held hands with a little girl in his class, and only cried for the first few minutes. He didn't nap, but I don't think any of the kids did. She said they all just laid there smiling. Will has never shared a room with anyone before so I am sure he was so interested in all of them.
All in all it was a great day. I am so glad that we are starting him in this program, I think it will be good for all of us.
I feel like Will's blog is turning in to his medical chart...
We have an MRI scheduled for next Thursday, but I found out that it is only looking at Will's abdomen, back, and pelvic area. I had thought that his right leg would be included to find out more about the huge vein in his foot, but it was not on there. I called Dr. Thomas to see if he would add it. After explaining to his office staff a million times that I was aware that he was a urologist and could care less about feet, he was the one that scheduled the MRI initially and he knew about this foot problem. Sure enough he called me right back (as he always does) and said that he would be glad to add it, but he didn't really think an MRI of his leg was really the test that needed to be done. His nurse called back and said that radiology couldn't add it on because the dye that they use wouldn't last long enough to look at all of these areas.
So I called his pediatrician Dr. Huss. He agreed that the leg needed to be looked at because he has a knot in his calf (which JT has always noticed, I didn't really think it was a big deal until recently). Will has been acting like it hurts him when we touch it lately. Dr. Huss agreed that MRI of the leg probably wasn't necessary, but an ultrasound should show us what we want to see. Sounds good to me because we wouldn't have to put Will to sleep for that. His nurse got it scheduled for me right away.
We went for the ultrasound and Will of course screamed his head off the majority of the time. When the tech turned on the sound to listen to blood flow, it got Will's attention and he started "ooh"-ing (his new favorite sound to make). He even started watching the ultrasound screen and seemed interested. Other times he watched TV. The rest of time he screamed. The radiologist reviewed it immediately and the tech told us that we needed to go back to the lobby and wait for Dr. Huss to call us. I told her that he had my cell and could call me later. She said the radiologist was calling him now and we didn't need to leave. Of course this couldn't mean anything good! JT and I tried to laugh it off, but we both were not excited about staying any longer than we had too.
I got to talk to Dr. Huss just a few minutes later. He said the ultrasound wasn't showing enough and JT and I were right...we need an MRI of the leg. Good grief! It looks like a vein malformation, but they can't see where it ends. They need to make sure it doesn't end in the muscle. I have no idea what this means. The radiologist added it to next week's test so that we don't have to put him to sleep twice. Wait a minute - how can they add it to the test when I was told that they couldn't do that just a few days before??? Dr. Huss said the radiologist said the test would take longer obviously, but there would be no issues with the anesthesia or the dye. Hmmm, I think that nurse lied to me. Oh well, we have a plan now and that is all that matters.
The plan: Thursday, Sept 6th
We will go for the MRI in the morning. Will is going to be put to sleep for it because he has to be perfectly still and there is no way that would happen otherwise! It will probably take a few hours. We are looking at the hemangioma (strawberry) on his back, fluid pockets in his abdomen, soft tissue and large veins in his pelvic area, and his calf to see if this vein is problematic.
I don't want anyone to get the wrong impression - Will is doing great!!! He is growing and developing just as he should. These are just all things that need to be checked out. Best case scenario is they tell us he will grow out of all of it without any interventions. If that is the case, I'll be sorry that we put him through all of this, but would be glad for no more procedures!
What we learned from our Vanderbilt hospital stay:
1. Careful what you wish for
All I have wanted was for a little time...just the 3 of us. A little vacation where we can just all be together. Well I got it! Nothing like 9 days of 24/7 togetherness in a hospital room. Not the vacation that I had in mind!
I just wanted Will to be cuddly again - I missed when Will was a little baby and would sleep on my chest and just snuggle up with me. Now he is always running around and will only sleep in his crib or car seat. He does NOT want to cuddle! The week leading up to this hospital stay and the week of, all he wanted to do was cuddle and be in our arms. I am mad at myself for wishing for this.
2. Stay positive, but be realistic - Never say never
When we first got to our actual hospital room from the ER, the nice transport man was telling us about the microfridge and how the couch pulls out to a bed. JT told him, "We'll be fine, we won't be here that long anyway."
We also noticed at the time that Will's IV line said "change Tuesday". JT said, "I don't plan on being here long enough to see that get changed." - Yep, we were still there! And I think we even saw it get changed again before we left.
We went to get something to eat and the elevator stopped on the 3rd floor (surgery floor). I said, "Glad we won't be seeing that floor again!" - Of course we saw it again 2 days later.
3. Trust your instincts
There were so many times that JT and I just looked at each and asked if we were being crazy and should we just go home. We knew that this was not the normal actions of our child. But when no one can find an answer, how else are you supposed to feel? I am glad that we didn't give up. And I'm glad that Dr. Huss and Dr. Thomas didn't give up either.
4. Be thankful
Thankful for family and friends - There was so much love and support ranging from a simple text, to bringing dinner, to staying with Will so JT and I could escape for an hour every once in a while.
Thankful for Vanderbilt - We take it for granted that one of the best children's hospitals in 20 minutes from our house. The nurses and doctors were all wonderful!
Thankful for our jobs - I am so thankful that we have jobs that we can walk away from when something important like this comes up. There was a little boy not much older than Will down the hall, and I never once saw a family member there with him. His door was always open so the nurses could give him as much attention as possible. I finally asked what was going on because I couldn't believe a parent wouldn't be there. I was quickly put in my place when the nurse told me that the family was from out of state and had to work to keep the insurance so that their baby could be at Vandy getting the treatment he needed. Wow - I can't imagine and don't even want to think about what that must be like.
5. Believe in the power of prayer
What Will learned from our Vanderbilt hospital stay:
Weight - 24 pounds (back to his weight before he got sick)
Height - 31.25 inches
Food:
Will is pretty much off of baby food, except I sometimes give him the Sprout brand of veggies because it is the only way he will eat them. He loves carbs - definitely my kid! He eats pancakes and sandwiches almost every day. He likes chicken nuggets and turkey. He isn't into hot dogs so much anymore. Bananas are still a favorite fruit, but sometimes he chooses to smush it up and play with it instead of eating it. He seems to only eat one thing off of his plate and refuses the rest. This is new for him because he used to eat anything. And it changes day to day of what his preferred food is. He is very polite and will hand you back the food he chooses not to eat.
Mobility:
He is walking everywhere! When we first got back from the hospital he went back to mostly crawling. After about a week he figured out walking again and now he is non-stop. All over the place! Poor Maggie can't get in a decent nap without Will closing in on her.
Language:
He continues to say "uh-oh".
At the hospital he learned the word "hi" and he says it all day long! He waves the correct direction now. He knows our routines and can figure out which one of us is leaving. When Hope comes in the morning and I grab my bag, he starts waving to me. When JT gets home at night, he waves "bye" to Hope.
Banana is "nananana". He will start yelling this in the grocery store when we walk by them.
"Gie" is every animal, including Maggie.
Toys:
Favorite thing is always Maggie!
He has learned to throw the ball and is getting pretty good at it. Maggie tries to be patient with him, but she eventually gives up and snatches it out of his hand.
We have been to the zoo a few times. He likes watching the monkeys swing, but he does NOT like hearing them yell. There are some clouded leopard cubs there that we like to watch climb trees and play with each other. Of course he calls them "gie". There is a great play area there that I am trying to get him to play more.
I apologize that this isn't a great update, but I feel like we lost an entire month with sickness. Next update will be at 18 months and I promise have to some pics!
We spent the morning with NeeNee and then went to Gram and Gramp's house for dinner. No fireworks this year because of the extreme dryness in the area. Will sure looked cute though!
Saturday:
Another restless night. JT and Will actually ended up sleeping together in the recliner most of the night. I hate that he can't get comfortable!
JT brought Will a pancake for breakfast, and he did pretty good eating it. He had some grilled cheese for lunch and a turkey sandwich for dinner. Eating was hit or miss, but we tried anything we could. MAO came today and Will ate his first ice cream cone - he loved it!
Will LOVED the ice cream cone!
Will really got into playing with his toys and getting back to his usual fun self.
The resident came in and took out Will's drain tube. I was up by his head and didn't really see it, but JT for some reason watched and I don't know how he didn't faint! Saturday evening Dr. Thomas showed up and was excited to see Will sitting on the couch playing. We talked for a long time about how crazy this past week and half has been. He told us that we were good parents and should always continue to follow our instincts about Will, because no one will ever know him like we do. What if we had given up and just taken him home Sunday? What kind of condition would Will be in now? Scary to even think about! Dr. Thomas thanked us for being so patient and letting them find the problem and fix him. We thanked him for giving us our baby back.
And then the words we have been longing to hear...discharge in the morning! YAY!!!!!!
Will was CRAZY Saturday night! He didn't want to go to bed. He just wanted to laugh and play. I can't blame him, he has been so lethargic for past 2 weeks.
Sunday:
The resident came in around 7:00 for one last check on Will and then she told us she was getting his paperwork ready. Yay! JT started packing like a mad man. I don't know why the hurry, it takes hours to get discharge stuff together. He took a bunch of stuff to the car and I stayed in the room with Will. Will apparently knew that we were going home and chose to scream at the top of his lungs in his room while pointing at the door. If I walked outside with him into the hall, he calmed down. The nurse came in and said everything was done. He took out Will's last IV and JT walked back in right after.
Goodbye Vandy! Will was wide-eyed the entire walk thru the hospital. When we got to the car he looked shocked. We are going home!
JT and I said that we could get through this because we had WILLpower! Our little boy is brave and tough and he can get through anything!
Our hospital board in the room. JT drew a pic of our family. Then Uncle Jon drew a pic of himself as a cartoon. And "WILLpower" is the most important thing!
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!
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!
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.
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.
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