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

Surgery Day: 11:02 am

Surgery has officially started. It got pushed back a little because there was another little boy who needed an emergency shunt this morning. Dr. Sood wanted to take care of that first because Dominic's surgery is slated for all day. We were up at 6:00 this morning after a better night's sleep than I expected. I was still up every couple hours and then Dominic woke up at 4:00 hungry. He's wasn't allowed anything to eat or drink after midnight, so I gave him some water in a bottle and that seemed to work. We were in admitting by 7:00 am and up for pre-op by 7:45. Unfortunately, because the surgery was pushed back, we spent a good two hours in the surgical waiting room. I hated just sitting there waiting, but we were able to spend a little more time with him beforehand. Mike's parents along with my parents and brother and sister all met at the hospital this morning. So we sat, chatted, sipped our Biggby's and waited. Finally at 9:30 they came back to get him. Mike and I talked with Dr. Sood and the anaesthesiologist and then had to say our good-byes and watch the nurses carry our precious little baby back to the OR. I didn't cry like I thought I would; neither of us did. I think I was just too overwhelmed with so many emotions that I couldn't even cry because it still hasn't really hit me. The hardest part was to watch him be carried away by the nurses, sucking his little thumb with his half-crooked smile, no idea what he was about to endure. My heart physically hurt as Mike and I walked back out to the waiting room, but for some reason I had no tears.

Since then we have been in the waiting area trying to make time pass. We finally just got the call at 11:02 that surgery started and Dominic was doing well. All his vitals were stable. Between 9:45 and 11:00 they started his two IV's, intubated him, and put him under. Sarah, Dr. Chugani's nurse came down to meet with us, review paperwork and then took us up to the PICU to see where he would be after recovery and for the next couple days.

We have been overwhelmed by all the emails, phone calls, texts and letters we've received dear friends and people we don't even know. This child has more people praying for him than we could have every imagined. It's amazing that such a young life can touch so many people. We can feel everyone's prayers and are filled with peace knowing that God is in control.

Dad's Turn

I've heard it through the grapevine (i.e. my mother) that there have been some requests to have a post from me, Dad. Laura is a talented writer, and we usually discuss what she's going to write about, so it's not to say I'm not involved in the blog, I'm just not the person writing it. That being said, Laura also thought it would be a good idea to share with all of you my perspective regarding Dominic's journey.

It's hard to believe he's only ten months old. He's been through more medically than I've been through my entire life. People have often asked me how I deal with this and still get up every morning, go to work, and try to push through the day. To be honest, some days it's very difficult. If Dominic's been up all night having seizures, not only am I sleep deprived, but my mind the next day is constantly thinking about him. The only thing I can say is that you learn to adapt. I still need to provide for my family. These have been the cards that we've been dealt. I can either sulk in my own misery, feeling sorry for myself and Dominic (which I have on many occasions), or I can push through it, putting one foot in front of the other. I try to do my part as a father. I've particularly tried to give Mitchell some much needed attention. Laura and Dominic are constantly running to therapy sessions and doctor visits. He spends a good deal of time at the nanny or with family members. I try to play with him as much as possible, knowing that Dominic has been a focus for me and Laura for most of the year. Again, you just try to put one foot in front of the other, one day at a time. I try to do what I can and give the rest to God.

Many people have commented to both Laura and I that they admire us for our faith during this trial. To be honest, there have been countless times during these past 8 months where my faith has been shaken. At times, I've been very angry at God. There have been countless nights where I've laid in bed and said, "God, if you want to heal him, you could do it right now. What do I need to say to make that happen? Give me the seizures. Let me deal with the pain and not this baby." I've seen other people with healthy children and there's a part of me that says, "Why have we been handed this cross? I should be helping my son learn to sit up and crawl instead of giving him an injection in his thigh." However, I keep coming back to my faith, because that's all I have left. I read a book called "The Promise: God's Purpose and Plan For When Life Hurts." I'd highly recommend it. Life is full of trials. No one is immune to suffering in this lifetime. Dominic has taught me so much about suffering. Many times he comes out of seizure and he gives me that angelic smile of his, as if to say, "It's okay dad, we'll get through this." Our faith teaches us that God can bring great good out of times of trial and suffering. Look at the Resurrection. That continues to be my hope today. On our homepage, we've listed the verse from Isaiah where the Lord says that he will raise us up with his victorious RIGHT hand. I find it ironic that Dom's weak side is his right. He may not ever have fine motor skills in that hand. I may not understand why we are dealing with this, but a greater good will come out of it, either in this life, or the next. God does have a plan, and it is good.

Shifting gears a little bit, I also wanted to take this time to say that I really don't know how I could have gone through these past 8 months without my wife. If you haven't noticed, she's awesome. She is the one constantly giving medications, tending to Dominic's and Mitchell's needs, dealing with doctors, nurses and insurance companies. She has more knowledge of Dominic's condition than most resident doctors. Her strength and example through all of this has been incredible. It's funny, when Dr. Chugani first met Laura, she knew so much about Dominic's condition that he asked her if she worked in the medical field. Nope, that's just Laura.

Well, tomorrow is the big day. I wouldn't say that I'm nervous, just very anxious to get this over with. I'm ready to give Dominic a seizure-free life, even if that means living with half a brain. I'm ready to see him off medication. I'm ready to see him grow up, even if it means walking with a limp or being behind in some of his subjects. We have no other alternative. I'm ready to kick these seizures out of our house and tell them never to come back. People have said that it must be a tough decision to go ahead with this surgery. My response has been, "It's a no-brainer."