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

Something to Smile About

So post-surgery day 4 has been pretty good. We've had a few bumps in the road. His right hand and leg/foot are still extremely swollen. They've had neurosurgery, pediatrics, and the IV team in here to look at it. They aren't sure if the IV is leaking or if it might be something else. The IV seems to be fine, so they haven't removed it. They would be more concerned if his left side wasn't swollen at all, but it is; just not nearly as much. They decided to order more blood work and to check his thyroid just to make sure their is nothing else going on.  When they drew the blood, it was really dark, almost black. I have no idea what it means, but I assume it's not normal. I asked the IV nurse and she said it could be from dehydration, but he's getting a ton of fluids, so that can't be the problem. I guess we'll see what the blood work shows. They also decided he's not drinking enough breast milk to be getting the nutrients he needs so they are supplementing with a high calorie formula. I'm actually fine with this because I feel like I constantly need to pump to get enough for him and it stresses me out. So, now he gets both. They considered starting a feeding tube, but since he takes a bottle just fine, I requested we don't stick any more tubes in him. He still has no interest in the delicious Gerber strained green beans and peas they send up here, but I don't really blame him.

Holding Dominic for the first time

A kiss from big brother

Dr. Mitchell

Playing at Ronald McDonald house

He loved the mini house

Not so sure about Ronald, though

He was doing this weird eye thing today where he would fixate and stare off to one side. The first time I saw it, the nurse was in here and thought it was strange too. She called neuro and they thought it might be a response to pain. I initially thought it was some other kind of seizure and my heart dropped through my stomach, out of my intestines, down to my knees and crashed into my feet. I thought I was going to fall apart right there. But, I'm trying not to get too worked up yet. They gave him some morphine and he stopped doing it. So, I am praying, praying, praying that it's temporary and not seizure related. He is still on three of his seizure meds, so I would be very surprised if he had any seizures. But, I guess anythings possible...

Bampa trying to get a smile

Mamma feeding the boy

Our friends Jeremy and Marisa came to visit

Mitchell bored of being in the hospital room

A visit from the Sankiewicz clan

Cousins and buddies...exactly 1 week apart

Kendzicky crew came for a visit

He has still been lethargic and unhappy...until today! I've only held him a couple times for 10 minutes or so before today. He seemed too uncomfortable every time I moved him to keep trying. But, I decided this afternoon I needed my Dominic fix and that he might need a Mama fix. So, we got him moved from the bed and I sat in the recliner next to it. We had to move the IV tubes, clamp his EVD drain, and move his pulse/ox cord - but we did it. He sat with me for quite a while, I just stroked his cheek and tummy and arms. He was in and out of sleep mostly, but quiet. His great-uncle Grant came to visit this afternoon and I held him the whole visit. After about 45 minutes I was talking about Dominic and looked down and said to him "yep, you're going to great, buddy" and he looked back at me and smiled. I couldn't believe it! My heart melted and then I tried to get him to smile again and he did again, and again, and again. I nursed him and the whole time he looked up at me and would smile every so often when I talked to him. Then I sat him up on my lap and he didn't fuss at all. Finally after an hour I was getting so hot with Dominic and all the blankets and pillows on me I had to put him back in the crib and that was the first time he had fussed since I picked him up. I realized he just really needs human contact and needs to be held, stroked and cuddled. This was the first day he has smiled since the surgery and it meant the world to Mike and me. There's a cute pic below!

It sounds like the earliest we'll get out of here is Wednesday. That could always change, but they said they will not send him home until he's pretty much back to normal - no pain meds other than Tylenol 3, must be nursing properly, eating baby food normally and moving normally (for him), and his body needs to be draining the cerebral spinal fluid on it's own. He also needs to be pooping normally. Some of the narcotics can "back you up" and he hasn't really pooped since he's been here. So, lucky him, they're adding stool softener to his "cocktail" of meds. They don't want to take any chances, which I'm glad about.

Big brother Mitchell was here yesterday and today visiting. Visits can't really last more than a couple hours because he goes nuts. He can't sit still and a hospital with a lot of sick kids is not the place for a busy 3 year old to be. I have to watchMamma and Bampa, The Kendzicky clan and Great Uncle Grant. A busy day, but we love visitors, it makes the time pass.

So all in all, the past few days have been going well and today was definitely a good day that gave Dominic and us something to smile about :o)

Mom and Dom time

Great Uncle Grant came to see us

Dominic's first (half) smile since surgery

Sitting up

Hospital perk - bed doubles as a dining table

Dad feeding Dominic before bed

Early to Rise

Mike and I both stayed in Dominic's hospital room last night which actually wasn't too bad. During all of our previous hospital stays, Dominic is fussy, sick of lying down, and has a hard time sleeping. However, the past several days because of coming off the surgery and being on morphine, Tylenol 3 and Motrin, he's pretty quiet. He doesn't cry unless he's in a lot of pain. So, we both actually got quite a bit of sleep last night. The only times we woke up where when the nurses came in. Dominic spiked a fever a couple times so we had to cool him off with cold wash clothes until the meds kicked in. But other than that, I didn't wake up until the docs rounded at 7:20.

I was concerned that Dominic wasn't being as responsive as he should. Again, he's been through major brain surgery, but I just wasn't sure how he should be at this point. I emailed Dr. Chugani (who is on vacation) and he promptly emailed me back saying that the first 3-4 days he'll sleep most of the time. It probably won't be until days 6-7 that he is more alert and start acting more like himself.  That is good to know and so for now, I'll stop tyring to make him smile and just let him rest.

The neurosurgery team came in around 10:00 this morning to remove his first drain. That was quite an experience. I've included some photos below, but I will warn you they are a little graphic. So, if you have a queasy stomach, you have been fairly warned! They took off his head wrap and you could actually see the tube under his skin. They pulled it out of a little hole above his ear and stitched it back up. He seems a little happier now that it's out. He still has his EVD that is much deeper into his skull that won't come out for a few more days. But they are not going to wrap his head again. They actually said they have found the incision heals better once the wrap is off. They also told us to clean him up. So Mike and I, ever so gently, have been wiping all the dried blood and iodine and stuff from around the incision. He's sleeping now and I think just getting that hot wrap and the tube out from under his skin will make him feel much better. I just can't wait to hold him! Hopefully by the end of the day we'll try again after he gets his shot of morphine.

Crazy what it looked like when the wrap came off

New nickname is Frankenstein

Even though it looks gross, the swelling is minimal and incision looks good

Removing the first drain from under the skin

Cleaning him up

Mike did great even though blood makes him squirm

We are really glad to be out of ICU and on a regular floor with kids with the flu and other minor ailments. Mike and I both realized after being in there for a couple days that if we ever start feeling sorry for ourselves, we need to go back and spend a day walking around the ICU. Seeing 3 week old babies with huge incisions on their chest, on feeding and breathing tubes and several IV's or the preemie babies who have no parents come to visit them, hold them, kiss them, or love them. Or like one little boy, who has been in there for 6 weeks waiting on a heart and kidney transplant - who has already undergone several surgeries and been to several hospitals around the country. We feel incredibly blessed that Dominic was probably one of the healthiest kids in ICU, despite having half his brain removed. God is good and his bringing great healing and comfort to our little man. Each day we seem him getting a little better, a little stronger and a little less puffy. I can't wait to see where he'll be two weeks from now, two months from now and two years from now. Hopefully he'll all surprise us and show us just how much he can do with just half a brain.

CT scan with only half a brain. The dark and light spots are blood/fluid

Slowly But Surely

Things are starting to settle down a bit here. Dominic was finally moved up to a regular patient floor around 4:00 this afternoon. He also had a CT scan that Mike and I are anxious to see tomorrow. It's got to look sort of strange with only half of a brain in his head. Dominic's swelling has gone down quite a bit as well. They removed his arterial line and catheter today so all he has left as a regular IV and his two drains, plus the pulse/oxygen and heart monitor. Hopefully one of the drains will come out tomorrow morning when they re-wrap his head.

Removing his arterial line...ouch!

It's sort of gross how they stitch it to his wrist

Dominic seems to be doing well, no fever or illness that we can tell. Best of all, NO SEIZURES! He is still on morphine, Tylenol 3 and Motrin for the pain, but he's drinking fine and not complaining too much, although no interest yet in baby food. I know I'm getting ahead of myself and probably expecting too much of him, but I just want to see him smile. He is very lethargic and sleeps most of the days and nights. He does look back and forth between Mike and I, but I swear that he's scowling at us. Poor baby, I'm sure he's in a lot of pain and doped up on pain meds, but I just really want to see my sweet, happy baby again. He can move his right side a little, when stimulated, but he's got an IV in that arm so I wouldn't expect him to move it much anyways. He's not moving a lot on his left side either to be honest. I tried holding him today because I thought being such a snuggler, maybe he just needed some Mama lovin'. But that really upset him and I think it was really painful to try to move him that much. So, all I can do is rub his arms, belly and legs and kiss his little face for now.

Some sweet lamb volunteer made him this quilt :o)

And the signs are from his brother and cousins

The neurosurgery team said that once the first drain comes out tomorrow they would like to begin inpatient physical therapy. Not sure what they can do with him if it hurts to try to pick him up, but I guess they know what they're doing. Mike and I have moved into the Ronald McDonald house, which is a little closer to the hospital and a lot nicer than the guest house we were staying in. It's nice to be able to have a space to go besides the hospital room and have somewhere to eat, shower and hopefully one of these days, take a nap.

A visit from Uncle Steve and the kiddos

Kids aren't allowed back int he ICU (boo) but they came to show support!

Thank you to everyone for your continued prayers, emails, blog posts, texts and voice messages. We could not do this without everyone's support. We strongly believe that Dominic will do great things and that he has come this far because of everyone's faithful prayers.

Nightcap

The day didn’t quite end up the way we thought. We originally heard we were going to move onto the regular patient floors, his first drain would be removed, his catheter would be removed and they would take out his arterial line. None of this happened. He’s still in the PICU but he’s doing well. After he got his second transfusion, his hemoglobin levels normalized. His blood sugar came down as well, but his electrolytes were low. So, they gave him some intravenously. I was able to give him 4 bottles today, so he’s eating just fine. Not a lot in volume, but no issues eating. Obviously I can’t nurse him, so I’ve had to pump and give him bottles. I’m not going to lie, it sucks...literally! I don’t know how people do this all the time. Hopefully just a few more days…

First feeding!

Dominic had some visitors today! His Mamma and Aunt Dana came early this afternoon and then his Uncle Bob, Uncle Jeff and Aunt Mary came this evening. Here are some cute pics!

Dominic hasn’t spiked a fever yet, which is good. But it could still happen. The swelling has gotten worse, but not much bruising. Although, his feet look like they would explode if you popped them with a pin. He was pretty out of it today. He would open his eyes a lot, but didn’t seem too happy. We tried to get him to smile, but we still haven’t seen one. We’re hoping his appetite comes back and we’re going to try giving him solid food tomorrow morning. We still haven’t been able to hold him, so we’re really hoping we’ll be able to do that tomorrow as well. 

Swollen little face

Mary (my sister-in-law who is watching Mitchell this week) let me know that Mitchell is doing great. He hasn’t asked for us once. While in most cases this would make me feel terrible, in this case, I am really glad he is having a great time with his cousins and he’s too busy having fun to worry about where we are. I would be a basket case if I knew Mitchell was homesick and crying for us while at the same time worrying about and caring for Dominic. So, this is just another blessing, among so many others. 

We are hoping tomorrow will be a big turning point. Hopefully we will leave the ICU and Dominic begins to get some of his spunk back. But overall, today was a good day and we are really looking forward to many more good days.

It's a New Day

 Dominic's surgery ended around 7:30 pm and Dr. Sood came out to let us know everything went well, no complications and he was in recovery. We were finally able to see Dominic for the first time around 8:30 last night, right before he was wheeled up to the PICU. We then had to wait again to see him as they got him settled into his room. Finally, at 10:30 they let us back to see him in ICU. He was so precious and sleeping peacefully. I guess 10 minutes prior he was not a happy camper, so they waited until his dose of morphine kicked in before they let us in. I am so grateful they were able to take out his breathing tube and his vitals are strong. Prior to surgery, the anesthesiologist said he may have the tube for a few days, depending on if he was able to breath on his own. But Dominic is a strong little guy and has been breathing just fine. His hemoglobin was a little low last night and this morning it has dropped even more, so they are going to give him another transfusion. It's not uncommon after a surgery like his to need more blood, so we're not concerned. Other than that, he seems to be doing really well. The swelling hasn't gotten too bad yet, although days 2-3 are supposed to be the worst. He still has the two drains from his head - one from the incision site to drain the blood and another from inside his skull to drain excess fluid to reduce the swelling. He also as an arterial line, two IV's and a catheter, but we're hoping the catheter can come out today.

Mike and I ended up going back to our room last night. I was really hesitant to leave, but the nurses, Dr. Sood and Dr. Chugani all said to go back and get sleep. The first night in the ICU is all about pain management and would sleep the entire time anyway. He has a nurse that sits with him and monitors him the whole time. Plus, there is really no where to sit and you're not allowed to be asleep when you're in there. There are two small chairs, but he's sharing a room with another little baby. We didn't see any other parents in there either, so after awhile we decided to leave and try to get some sleep. Again, I slept surprisingly well, but when I turned over and saw the clock at 5:45 am, I jumped out of bed. I couldn't wait to get here this morning to see him. We got here around 6:30 and he's opened his eyes a few times. He was awake for a good five minutes and kept slowly looking back and forth between Mike and me with a look like "what in the world did you do to me?!" I am so grateful he's too young to remember this. Dr. Sood stopped by and said he looked great. His drains look good and hopefully one of them can come out tomorrow. He also scheduled a follow-up CT scan for tomorrow.

Out of recovery, heading into ICU

We're hoping once he gets more blood his levels will come back up and they'll be able to move him to a regular floor today. In the meantime, Mike and I are just sitting here, sipping coffee, reading the paper and waiting. I think "waiting" should be my new mantra. We always seem to be waiting for something - waiting for med after med to work, waiting for test results, waiting for the surgery to be over, waiting to hear any news, waiting for him to wake up, waiting to see if his levels go up, waiting to see if he moves his right side. Waiting, waiting, and more waiting. After 8 months of it, I can't wait until I'm not living in a constant state of waiting.

Seeing him for the first time after recovery. What a brave little guy!

The Grandmas with happy tears!

All set up in the PICU

Good morning, Sunshine! Starting to swell...

D-Day

They're closing him up! Surgery went well, no complications and they are just finishing up. Should be another hour and then another hour or so for recovery before we can see him. Dr. Chugani came down and spoke with us a couple hours ago, which was very reassuring. We've spent the day in a private conference room. The sea of blue "Devoted to Dominic" shirts was starting to overtake the surgical waiting room, and since they knew we were going to be here all day, they gave us a room all to ourselves. It has been great, but the 10' x10' room is getting smaller by the hour :o) Mike and I are so blessed to have our parents and my brother and sister here with us today to keep us company, distract us with rummy and sudoku, and to provide snacks for us to eat our feelings away. The nurse has been calling every hour, on the hour, giving us updates. Every update up to this point has been "we're still working, his vitals are stable, and I'll call again in an hour". So, we are incredibly grateful that there were no complications and everything has gone well so far. We are so anxious to see him!

Here are some pictures from throughout the long day of waiting, as well as some from yesterday. I will post some pictures of Dominic post-surgery either later tonight or tomorrow. So check back!

A lot of the Dunlap clan went to church in their shirts to pray for Dominic

All checked in the guest house, hanging with Mom

Our little hero

The Main Man

Last night of all these meds

Taking him into pre-op

In the waiting room, ready to take him back

Good thing they marked the correct side :o)

Saying our good-byes

Camped out in our private waiting room