Just One More Thing....

I usually sit down to write a post at night because the days can be so hectic. Well, I should have done it earlier yesterday when things were pretty calm because last night was a little nuts. Dominic started having diarrhea around 7:00 pm and had it 4 times before 9:00 pm. He also spiked a fever again and shortly after getting his 9:00 meds, threw up all over himself and his bed. Neurosurgery didn't really know what to make of it. It could have something to do with the shunt or it could be some other kind of infection starting. So, after we finally got him all cleaned up he had to have blood drawn. Blood tests revealed no infection but based on a certain protein they test, there is still quite a bit of pressure. This could just be because he had the shunt put in two days ago and there is still some swelling. When Dr. Sood came by this morning he said we just have to wait. It doesn't sound like anything to do with the shunt but is probably just a stomach bug. You spend enough time here, you're likely to catch something. But, he won't send us home if he's having signs of sickness. So, more waiting!

Other than that, Dominic had a great day yesterday. My in-laws visited and it was such a nice day outside I actually got out. I walked a few blocks to CVS and stocked up on stuff I ran out of. Those little bottles of shampoo and conditioner don't last very long! It felt good to just move and be outside. I didn't realize how much my body craves Vitamin D. Since it was a Saturday, the hospital was pretty empty. So Mike and I also took Dominic on a walk in the wagon and we just sat out in the garden for awhile. When we came back up, we were all excited to order Thai food for dinner. It took 10 days of eating cafeteria food before the nursing staff told us there was a take-out menu book! Unfortunately, when we called, they told us they don't deliver after 4pm, so it was back to the cafeteria :o( Agghh, I can't wait to get home and eat real food again.

Hanging out in the garden

This morning Mike took off to go pick up Mitchell and take him back to his parents' house and I had a couple special visitors! My friend Katie (who was such a huge help watching Mitchell over these past months) and her husband Ryan came to visit all the way from Chicago, where they recently moved from GR. I couldn't believe they made the trek all the way here! After that came Uncle Bob and cousins Jonah and Leah. And then my friend Jenna came down again for lunch. My in-laws are on their way for a quick visit too. Visitors are great, especially when Mike isn't here to keep me company.

The Napps are here!

"Auntie" Jenna came back for another visit!

It looks like we won't be getting out of here tomorrow. Maybe not even Tuesday. It all sort of depends on if Dominic is feeling better and fever-free. We just keep praying we can go home soon, which I think would be so much better for all of us. But at the same time, I don't want to leave and have something happen and not know what to do 3 hours away. So, I guess this is the best thing right now.

Shunt The Front Door

Today was sort of a whirlwind. Yesterday afternoon we were in a state of waiting and we were told we would wait a couple days to determine if he needed a shunt. We had another rough night, Dominic didn't sleep much, and despite continued doses of "Baby Vicadin", he was still very uncomfortable. When Dr. Sood and his team did rounds this morning at 10 am, they informed me that they needed to put in a shunt today. This decision was based on his CT scan, blood work, fever, demeanor and the puffy, fluid-filled areas on the top of his head. I first had to process this and then of course I went straight to the Internet to find out exactly what they were going to do. To be honest, I didn't realize it was another surgery at first. He always made it sound like it wasn't that big of a deal. But they actually put him back under anesthesia and have to open him up again. Fortunately, he already has a few holes in his head from the drains, so they were able to go through there. They placed one end of the small tube in the ventricle where extra fluid is causing problems. There is a valve in the tube that controls the amount of fluid that runs through it and this controls the pressure in his head. It also makes sure that the fluid flows in only one direction, away from the brain. Then they tunnel the tube under the skin from behind his ear to his abdomen where the fluid will be reabsorbed by his body. They cut a small hole in his abdomen to stitch the tube into place internally. It's pretty crazy; I can actually feel the tube when I gently press on his chest. For those of you who are visual learners like me, here's a pic of how it works:

 Dominic did great. The surgery only took an hour or so plus recovery - nothing compared to his hemispherecotmy. My mother-in-law and sister-in-law kept Mike and I company in the surgical waiting room and it was great to just sit and chat. The days can be pretty lonely when the only people you have to talk to are the nurses. By the time they had wheeled him back to our room he was awake, alert and looking around. He spiked another fever, which is very common post-op. He was also still crabby but the pain meds have helped that. Now we just watch for the next few days to make sure everything is working, no fevers and his demeanor improves. He will be pretty sore for a couple days since they push the tubing through all the tissue from his head to his belly. Then we will finally get to go home! That is of course if the shunt doesn't get infected (knock on wood).

In pre-op

We're not sure if this is something he'll need forever or not. Some kids eventually start processing and reabsorbing cerebrospinal fluid on their own and they can remove the shunt. Others have it forever. There is a risk of infection - while it's only 2% in hemispherecotmy patients, we have learned from past experience that Dominic usually falls in that small percentage. From the kidney stones to the brain stem swelling, to low sodium levels and vomiting, to needing a shunt. He always falls in that small percentage of rare side effects. But we are really hoping and praying that it does not get infected. If it does, they have to remove the shunt, drain the infection, treat it and put the shunt back in. There is also a chance that in the future the shunt could clog. In that case they'd have to do something similar to correct it.

Back from surgery, feeling good!

A little snooze

Here is a video of Dominic using his right arm 10 days post-hemispherecotmy. Yeah!!!

Out of surgey, shunt is in, on to recovery!

Dominic has been such a champ through all this. They really didn't think anything was wrong until they did the CT scan and blood work. Besides the fever, he wasn't too bad. Most kids are screaming and crying uncontrollably if fluid is building up and putting pressure on the brain. Not Dominic, he just whimpers and whines. He's one tough little guy. Today in pre-op I was rocking him and humming "Fairest Lord Jesus" (which my mom always sang to us before bed) and just looking in his eyes. We always call him our "Little Old Soul" because when you look in his eyes they seem to go on forever. He's been through a lot more than most people endure in a lifetime and yet he just returns my look with a smile. This little guy has been teaching me a lot about patience, endurance, strength and trust. I never thought I could learn so much from a 10 month old baby, but I have! God sure works in mysterious ways :o)

My favorite boys :o)

Still Waiting...

We had a rough night last night. Dominic didn't finally fall asleep until about midnight. It doesn't help that people come in every hour to check his vitals. He was really cranky and had been running a temp most of the evening. At 1:00 am he was up again, crying. Then again and finally at 3:00 I just decided to sit with him the recliner and sleep holding him. That worked but he was up at 6:00 am. So, like I said, long night :o) No one is really sure what's bugging him. The fever can cause irritability, but not this much. This morning when Dr. Sood saw him, he decided to order another round of blood work and another CT scan. As it turns out, there is fluid on the outside of his brain on his RIGHT side (not the side that was removed).  It's hard to know at this point what that will mean. Everything in his skull is sort of shifting after having part of the brain removed, so it's not uncommon for fluid to accumulate on the opposite side. Unfortunately, this could also mean he needs a shunt. It's not a for sure thing, it could really go either way. His body may absorb it and it won't be an issue. But if fluid increases, they'll need to put in a shunt. So, we're back to waiting. Dr. Sood wants to monitor him over the next couple says (so much for going home tomorrow) and see if his demeanor gets better or worse. If he seems to get better and the fevers stop, he may send us home and have a follow up CT in a week or two. So, hopefully we'll know which way this is headed by the end of the weekend.

CT Scan

Our room is constantly filled with people. Between the nurses, nursing students, neurologists, neurosurgeons, pediatricians, nutritionists, physical and occupational therapists, child life specialists and the IV team, we're pretty busy all day. Physical and occupational therapy have been coming each day to work with Dominic. Stretching him and encouraging him to use his right side. He had two pretty big steps forward today. He was lifting his right arm up to his face and clasping his two hands together. He also sat up for quite a bit. While these are things he's mastered before, he was expected to regress and be weaker for several weeks post-surgery. So, this was very encouraging to see. 

An OT working with Dominic

Look at all those stitches! Incision looking good.

Not a fan of tummy time

And we're sitting!

In other news, Mike brought Mitchell up to the hospital for the afternoon. Mitchell and I got lunch and had a picnic in the courtyard, which is actually very nice. It's pretty much the center of the hospital and university campus, so always a lot of people walking around. Plus they have a nice little "healing garden" to visit. Things were up and down with us. I could tell from the minute he got here that he was tired, so that never helps anything. But he was screaming as we walked down the hall because he wanted to go out the door first. Then he didn't want to get lunch because he wanted to stay outside and listen the music that was playing. He wanted me to carry him when I had two drinks and two bags of food in my hands and when I said I couldn't, he freaked out and started screaming. It's embarrassing and I'm sure people think he's a brat. I'm trying to cut him some slack and not get frustrated because I know he's going through a lot too. But it's incredibly hard for me to want to do fun things with him and try to spend quality one-on-one time with him when he is constantly screaming, crying or whining at me. I'm already sleep-deprived and stressed out and having my first born despise me doesn't help. I just keep praying that once are are all home, things will settle down and we'll all chill out a little. Regardless, I still need to make time with him. Even if he whines and pushes me away the whole time, he needs to know I want to be with him no matter what. Mike took him back to his parents' house and will spend the night there again and will then bring Mitchell back in the morning and stay for the day.

Lunch with Mom

The Healing Garden

He's so happy to be here

Taking Little Brother for a walk

I was talking with my mom today and she shared with me her devotion from this morning. Dominic was very heavy on her heart, as he is most days, but today especially. She prayed for what she needed to hear today and this was what she opened to. I have bolded the parts we both found incredibly moving:

You Shall Move Swiftly

Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God" ~ Philippians 4:6

Behold, out of gross darkness, a light will shine. Out of the night a cry will be heard. For I will make My will known to you, and you will no longer move haltingly, you shall move swiftly and surely. You may not know what I am doing as yet, but you will know hereafter, and you will be moved by My divine unction and authority. You will not be left to falter as a blind man searches out his way; with your hand in Mine, we will move together. My Spirit will be apparent by your life and testimony, and you will be empowered by My might and power. My strength never fails. Yes, I will be to you an energizing and quickening power within you and upon you, and you will go in the strength of your God. You will not fail; nor will your arm droop nor your foot lag.

It's amazing how God give us what we need when we need it. I found this to be very uplifting and encouraging, seeing that Dominic is peripherally blind in one eye and has a weak arm and foot. I feel like it was written just for Dominic. I am anxious to see what God has planned for him and how He will use Dominic's life and testimony for His glory.

The Waiting Game

I woke up this morning hoping it would be our last full day and night in the hospital. Dominic seems to be getting stronger and more alert each day. He's been really fussy the past couple days, but nothing over the top. He had a fever yesterday, but after a dose of Motrin it was gone. So, we were thinking we were in the clear. He was pretty good this morning - ate and drank quite a bit. We staggered his meds so there was no vomiting. He seemed really sleepy though. Everyone came through and saw him and thought he looked good. Unfortuantly, he spiked another fever around 1:00 pm and it hasn't gone down, despite two doses of Motrin. So when Neurosurgery came around they said he can't go home with a fever. We play the "waiting game". Yea :o) He thought the fever could be because there is probably still small amounts of blood in his cerebral spinal fluid that his body is trying to break down. Regardless we're still here, I'm guessing now until at least Friday.

Cat napping this morning

Crooked smile :o)

We had some visitors today again, which was great. Our good friend Rachel and her mom came from Kalamazoo for a visit with her new baby Henrik. Marie knitted the cute blue bear in the photo! Then Mamma, Aunt Mary, and Uncle Bob came for a visit too. It's great to have visitors, but I always feel bad because there are doctors, nurses, PT/OT, nutrition, etc. constantly coming in and out, it makes it hard to just sit and chat.

Marie, Rachel and Henrik with Dominator

Silly Aunt Mar Mar

The boy and his Mamma

Me with cousin Dylan

We also got outside today! Mike and I loaded Dominic and his IV up in the wagon and we strolled around the courtyard. It was a beautiful day and I needed the vitamin D after being hold up in here for 9 days. Dominic seemed to enjoy the fresh air too! I hope to talk another walk tomorrow.

Going for a stroll

Enjoying the sunshine

Hanging in the courtyard (yes, I'm in my pj's at 3pm)

I haven't seen Mitchell since Sunday. I really, really want to, but I'm afraid of how it will go and not sure I want to go through that again. But, I think Mike is going to bring him up here tomorrow. I might take him on a walk or have a picnic in the courtyard or something. I just fear he's going to hate me even more now that I haven't seen him in a few days. He told Mike he knows that I'm at the hospital with Dominic because he has a big cut on his head (and needs a band-aid), so that's why I'm not around. I almost wish he didn't know so that he wouldn't realize I'm with Dominic and not him. My fear is that he'll think I'm choosing Dominic over him or give more attention to Dominic than him. But kids are resiliant, so hopefully this will be something he forgets about quickly because I know I won't.

What a Difference Another Day Makes

We were hoping today would be an even better day than yesterday. Unfortunately, it wasn't. Although, it wasn't all bad. The Nutrition Team is all over me to make sure he's drinking a certain amount of milk and formula. So, this morning when he woke up I gave him 5 oz. of milk/formula and he took it great so an hour later I gave him some applesauce. Well, an hour after that and 20 minutes after getting his morning meds he blew chunks ALL OVER. It was all over him, all over the bed, all over his blankets etc. And this was literally 10 seconds before the entire Peds team came in for rounds. So, the room stunk like puke when they walked in and Dominic was still covered in it. Strange though, not one of the interns or residents thought to help or call in the nurse. They just stood there and watched me clean up puke....neat. Then came OT and PT who worked with him for an hour. An hour in which he cried and squeled the entire time. After that he slept about 2 hours and when he woke up he spiked a fever. I was starting to get concerned that the sore on his neck was infected or something was wrong from removing the EVD. Why else would you throw up, sleep a lot and have a fever if not for infection. The nurse gave him Motrin and that lowered the fever and he hasn't vomited since. He did have another ginormous poop, so that's good. We were still giving him suppositories and stool softeners. He has been pretty uncomfortable and seems to have some GI issues. I'm assuming it's from all the narcotics he's taking and I'm hoping once we go home it won't be an issue. All of the doctors think the vomiting was from the meds and being constipated. Today was the first day they gave him all his meds orally instead of through IV. The iron supplement can be pretty rough on the tummy, so they are going to spread out the meds a bit tomorrow. But if he throws up again or has another fever, they are going to order more blood work. As much as I want to go home, I refuse to leave this hospital until he is healthy and pooping normally. It would be one thing if we lived a half hour from here, but we're three hours away and if something bad happened, the last thing I want to do is end up in the ER in Grand Rapids trying to explain all that has happened to a 3rd year medical student. Where do I begin..."well, he just had half his brain removed..."

Good day for a long nap

Dominic's personality is coming back more and more each day, but I've noticed that with it comes quite a bit of irritability. I've heard this is not unusual after a surgery like this, but it's strange to me. Dominic seems like a laid back kid anyway, but having seizures and being so drugged up the past 8 months made for a really quiet and chill baby. I haven't seen him so fussy before. I'm hoping this will pass, but if not, he's probably a lot more 'normal' now then he was before. Most babies aren't perfectly quiet and content to just sit in a seat and look at you all day :o)

Where all the magic happens

 So, Dr. Sood was hoping to send us home tomorrow, but with the fever today, they won't send him home until he's 24 hours fever free. So, we'll be here at least another night. Since I saw an end in sight, we checked out of the Ronald McDonald house today. That place is amazing! It's too bad we weren't able to take more advantage of it while we were here. Since he was only in ICU for 2 1/2 days, we only stayed there a couple nights, but I continued to use it as a place to shower, change and eat. We've been staying in his hospital room since he was moved to a regular floor. But it's awesome and Mike and I hope to be able to make meals or do something for our local Ronald McDonald House when we get home. It's a great place for families and they rely a lot on donations. Plus they are super nice! But I'm glad we're out of there, that means home isn't too far away!  I'm praying that tomorrow he wakes up refreshed, hungry and happy.

Home away from home

What a Difference a Day Makes

Dominic is doing GREAT today! He finally pooped late last night. I never thought I would be so happy to change a dirty diaper. He felt much better after that. He woke up this morning and drank 4 1/2 oz. and then ate his first solid food since surgery. Then I nursed him and he did great. I think they are still concerned about his nutrition since his albumin was so low, so of course the peds team sent the nutritionist down to talk to me. Although I know it wasn't the case, it sort of felt like my care for him was being questioned. Why isn't he eating more? You need to make sure he eats a certain amount every few hours. First of all, isn't that why he's here? So that the doctors and nurses can monitor that? I'm used to feeding him when he's hungry. And second, if he's not hungry or if he's going to just throw it all up (like he did yesterday), I'm not going to force it down his throat. But, whatever. Now I have to make sure he drinks at least 4 oz formula/breast milk every 2-3 hours. And I can't nurse him, because they can't measure it. So, the pumping continues...

Mmm...applesauce

Hanging with Dad

He loves Lion

Dr. Chugani came in today to check on him and was very pleased with how well he's doing. They took out his EVD so he is drain free! He needs to be closely monitored over the next couple days to make sure his body is absorbing the fluid on it's own. He has this nasty sore on the back of his neck from the clamp during surgery. Then, the had him laying on that side after surgery so he wasn't laying on the stitches. But the poor thing, it must have rubbed against the sheets and now it's a big sore. Another warning for those who faint easily, there are a couple graphic pics below. You don't have to look at them, because they're sort of gross. But I'm weird and I guess I think it's sort of cool. They also took away one of the IV fluids, so he only has one IV left. He's still getting a lot of his meds through IV, but that might change over the next few days. He was also very happy to see how smiley and alert Dominic is. He even started laughing today! We finally see our little boy coming back and living SEIZURE-FREE! I wish we could just jump to 2 months from now and skip this whole recovering process. But, we're getting there, day by day.

With Dr. "Rock Star" Chugani

The dreaded EVD

Nasty little bruise turned sore from the clamp during surgery

Removing his EVD

Taking out the staples...ouch!

Ahhh, morphine

A visit from Diana

It's crazy how much better he seems today. Below are two videos. One was from the second day post-op and the other is from this morning. He's much happier today.

The Good, The Bad, and The Gross

Today was a pretty good day for Dominic. Everything regarding the actual surgery - the incision, the drain, and the swelling are great. He hasn't had any issues. What he is having issues with are random things that can accompany major surgery. We found out from his blood tests yesterday that he has extremely low albumin levels. They think this is because he hasn't been eating or drinking much over the past few days. It's normal right after surgery to not have an appetite, but we're going on day 7 and it's affecting his body. His right hand and leg/foot have been really puffy and initially they thought it was just excess fluids, but now they know it's lack of nutrition. There is a part of me that feels like I'm not doing my job very well, but no matter how much I pump, he just hasn't wanted to eat. So, they are starting him on a high calorie formula that they want to be his primary source of nutrients. They also gave him three vials of Albumin intravenously tonight and already the puffiness has gone down. This might be the beginning of the end of nursing for me. I guess it all depends on how long we're in here, but he's having a hard time nursing and gets mostly bottles. We'll see...

Getting his dressings changed

Another issue he's having is constipation. He hasn't pooped since last Monday and he's been working on one for the past two days. Despite our efforts with stool softeners and two suppositories, he hasn't gone yet. He is very uncomfortable, he sits or lays all day trying to push. But imagine the pressure you would feel if you were trying to push really hard with 36 stitches in your head and cerebral spinal fluid draining out of a hole in your skull. Poor kid. I never thought his biggest issue after major brain surgery would be pooping. But, here we are.

He's working on one

Dominic has also developed a sore on the back of his neck. It appears it started as a bruise from the way his head was laying and clamped during surgery. But since they've had him in bed resting on one side (since the side has all the stitches) it has been rubbing and is now an open sore. They keep putting Bacitracin and new dressings on it. But now we have to shift his head so he's laying on his stitches to give the bruise/sore time to heal. Sounds like a lose-lose situation to me.

Despite a few issues, Dominic still continues to get better. I don't think he's quite where we thought he'd be yet. I have a feeling we won't be going home until closer to the end of the week. But that's fine, I really don't want to go home if there are still a few concerns. They did change the setting on the EVD today so they are hoping to see his body start to drain and absorb the cerebral spinal fluid on it's own. He'll give it a couple days and then take it out altogether and then watch him for a couple more days.

We had some more visitors today, but stupid me, I forgot to take pictures. But we had our friends Scott and Lindsay Schultz come this morning and kindly brought us breakfast and coffee. Next, my good friend Jenna dropped in with lunch and visited for awhile. Then came Mamma and Bampa for their daily visit and then Dominic's Uncle Steve came with cousins Nathan and Megan. Busy day! But it's great, it makes the time pass.

He loves his new lion

He just lays there and holds him

 I decided to leave for a few hours to go visit Mitchell. I've only seen him for a few hours this entire last week, so I was looking forward to some quality time outside the hospital. I did not turn out the way I thought it would. He is staying with Mike's sister and her family and according to them, he is doing great and is very well behaved. The only way I can descibe his actions and demeanor towards me tonight was 'mean'. He did not want to give me a hug, he didn't want to sit on my lap and he talked back to me like he never has before. I'm realizing how difficult this whole thing has to be on Mitchell. Sometimes I forget how it must affect him because he has so easily bounced around over the past 8 months and never complained. But he's older now and I can tell he has this anger and frustration inside him and he probably doesn't even know why. I'm sure there are some feelings of abandonment because he never knows where he'll be from day to day. Not gonna lie, it broke my heart. I feel responsible and terrible that I didn't really consider how hard this would be for him. At one point during dinner when he started throwing a fit, I took him in the other room and told him he had two choices: eat dinner and get ice cream or get down and ready for bed. He looked at me right in the eyes and said "No, I want to go home! I want to go home! To my house!" I thought I was going to lose it.

Mitchell and cousin Mady having a tea party