PICU/Recovery Day #2

6:00 PM
Though it feels like 10 PM, Jacob has finally settled down for a snooze. We've learned that he is happiest in the stroller making laps around the halls. I am hoping that being upright for so long will help reduce the swelling. I think he will be much more tolerant and cooperative when he can see what is happening, especially when it comes to eating.

4:00 PM
Sorry for the lack of updates. It has been a very, very long day. Jacob has cried out of frustration essentially non-stop since 9 AM. He is refusing everything, including sleep. And with the incessant crying, his eyes have become very swollen. This feels never ending. Despite all of that, we have been moved from PICU to the regular Inpatient floor.

Also, if I had a penny for everytime I heard "I want to go home", I wouldn't need to buy a lottery ticket.

Here's to a better night and patient nurses.

7:00 AM
Jacob had an amazing night last nigt. I took the first shift and slept soundly in bed with him from 10PM to 2AM. He awoke a few times for a drink or a cold rag on his eyes but quietly went back to sleep. Scott took the next shift. It started with Jake throwing a fit of frustration but once we settled him down, he slept straight through until 5AM.

We were up at 5 AM. He's had a lot to drink. He requested a chocolate donut but nothing seems to be open before 6AM. His face is looking much better. I am hopeful that he will get his eyes open later today. He refuses to pee in his pull-up and insists on using the potty. This was also true for his first bowel movement this morning. Gross, I know, but it's a milestone in this place!

He didn't want to go back to bed so we sat together in the chair to watch George. Soon, he requested to sit by himself. So we propped him up with pillows and after one more episode, he fell fast asleep. The first round of doctors were kind enough not to wake him up.

Below are a couple of pictures of our little trooper. Nothing graphic. We just want everyone to know that is doing great. In the pictures without the cast on his nose, the brown stuff is just a special tape that is slightly hardened for extra protection.

 

 

Amazing Stories from UIHC

I know that we will be here for a number more days, but I wanted to share some absolutely amazing stories.

#1 - Giggle Flowers
When I took Jake into the OR, he was already groggy from the oral medicine. As they put the mask to his face, the anesthesiologist was explaining that it was "giggle gas" in the mask. I tried to help him understand by relating that to an episode of Dragon Tales that he watches often at daycare where the characters are searching for giggle flowers for their mother's birthday. It wasn't long before he was asleep.

Later, as we were called back to his recovery area, his head and face were securely bandaged and over his head dressing was a light, knit cap. The recovery nurse explained that they always like draw on the caps for children. On Jake's cap, someone hand-drew the main character from Dragon Tales and included a bundle of giggle flowers.

People's care and attention to the personal touch is amazing.

#2 - Jesus Medallion
There were three "families" in the waiting room yesterday that were in for the long haul, us included. We started with small talk and eventually got to know each other's stories. Oddly enough, all three families were relatively local (Iowa City, Cedar Rapids, and Davenport) so we even talked about some local events. There was a very large family occupying the room next door. They had two small children they were trying to keep quiet, but by the end of the day when we were nearly the only ones left, they were pretty comfortable letting them run. As we talked, I learned that they were there for a family member's kidney transplant with the donor being his cousin from California. I shared some of my experience with my dad's transplant. They asked who we were waiting for, so I gave an explanation of Jake's procedure.

The next thing I know, the mother of the kidney recipient (her 27 year old son) came over to me and placed a small Jesus medallion in my hand. She explained that she had that medallion blessed and carried it with her as her then 6 year old son battled cancer. She told of some of his other health struggles and how he made it to UIHC that day. She wanted me to have the medallion to empower Jacob and my family to overcome this obstacle. It was such a touching moment that I never could have anticipated.

I never caught their names but they will forever be in my heart. Best wishes to Matt on his recovery!!

#3 - Where are you from?
As we entered the recovery room, we were elated to see our little man safe and snuggly in bed. We were graced with a sweet recovery nurse who quickly updated us on how he was doing. Soon she asked where we were from. This is not an uncommon question. Then she sheepishly asked if we recognized the name of someone that shared our last name (not a common last name). As it turns out, our nurse went to the same college as Grandpa John and he used to give her and another nurse rides back to Dubuque on weekends for Saturday training or to see family. This was nearly 40 years ago, but she still remembers and shared some of her favorite "adventures". It was an amazing "small world" story.

PICU Day #1

9:15 PM
The day has ended positively. Jake calmly fell asleep while listening to cartoons. Much better than earlier when he needed sedation. Shortly after he fell asleep, it was time for his next dose of morphine. It was quietly administered through his IV, so it will hopefully help him sleep a good stretch.

Mornings can be very hectic with the nursing change and surgeons rounds, but I will check in as soon as I can.

Love to all!!

7:45 PM
Jacob is resting nicely. He is "watching" cartoons, telling stories, and even laughing a little. Here's hoping for a smooth night with great rest. It will be best for all of us if the eye swelling went down enough for him to see.

4:00 PM
Jacob has made some big-boy strides this afternoon. He insisted on peeing in the potty...twice. Next, he and I spent some quality time in the rocking chair. We are hoping that keeping him upright will help with the swelling. His face is still quite swollen but only his eyes are truly bothering him.

Otherwise, he's had a hard time settling down, so with his next dose of morphine, they are going to give him a sedative. Bless his sleepy little heart.

1:30 PM
The arterial line is out. This is a small win for the boy who is just having to tolerate everything else. He now has both hands free which is essential for drinking milk/juice and wagging Boof's tail. All we have left is an IV line in both feet, but only one is hooked up. So long as we are in the PICU, they will keep two IVs just in case.

He is responding 100% neurologically. He is talking about things from home, his friends, wanting to ride the carousel, etc. He has even been trying to express how he feels. He told us he was "mad at the doctors because they hurt his feelings." It was so cute, I couldn't help but laugh. Then he yelled at me for laughing at him.

Now if only we could get him some restful sleep. I think he would be in a better mood. But he is obviously frustrated and dissoriented by not being able to see.

11:00 AM
He has finally settled down for a nap. He has been up since about 8 AM with a constant stream of doctors, nurses, dietians, and pharmacists in his room. He was getting pretty irritated with every little movement through the room. I can't blame him.

I just sat with the doctors as they did their rounds. From what I understood, it sounds like he is doing very well. They were really impressed with how much he is drinking. Sounded like they are going to get him off of morphine this afternoon and use Tylenol with Codine. I believe we are going to be at least one more night in PICU.

As for tubes and wires, his only connections right now are two IVs in his feet (one is saline blocked and the other is active), an arterial line in his hand for easy blood draw and constant blood pressure monitoring, and monitors on his chest. We were able to remove the oxygen this morning and that made him much more comfortable to not have that up his nose. We are hoping that the arterial line will come out today so that he can use both hands. Other than the swollen eyes, his immobilized hand is a major point of frustration.

The swelling seems to be getting worse. His whole face is quite puffy. We are keeping his head elevated to hopefully reduce it at quickly as possible.

Let's just hope we all get a good nap before the next round of evaluations.

9:30 AM
Just asked for and tried a bite of banana. His jaw is pretty sore so he was only in the mood for one bite. I am just proud of him for asking and trying.

9:00 AM
We got in to see Jake at about 6:30 last night. He was already awake and had apparently been trying to climb out of the bed. He looked great, considering. I was doing an assessment of his tubes and wires and noticed two things. He didn't have a drain in his head like I had expected, which made me nervous for swelling. Also, I didn't see a line for a cathedar. I was told he would have one for two days or so. When I asked about it, I was told that he didn't want it and started pulling it out in the OR so they just removed it. Who does that sound like...Grandpa K.

We were quickly moved to the PICU. Jake was getting irritable at this point. He cried from 6:30 to nearly 10:00 PM. I believe we were able to get his pain under control and he fell asleep. He was up every two hours. We readministered morphine and he would doze back off. He was up from 2-3AM for a couple episodes of "Curious George". This is also the first time I noticed the swelling in his eyes.

By 8:00 AM, he was asking to go to the bathroom (and was able to pee in a cup), was resting comfortably, was crabbing at the second round of nurses, was asking furiously to go home, was distraught about not being able to see and has had his share of apple juice and milk. His most discomfort right now is that both eyes are completely swollen shut. I just spoke to our neurosurgeon and he didn't expect the swelling to subside for 3-4 days.

Updates are a little harder to come by since he requires so much attention. But prayers for fast healing are still much appreciated. Thank you all for the love so far.

Jake's Big Day

5:00 PM
Jake is finished!!! Otolaryngology just stopped by to give the details of the final outcome. He began by removing the lesion on the bridge of his nose. Then he traced the tract under the nose bone. This required him to drill out part of the bone in order to remove the tract. Thankfully, the neurosurgeon had the foresight to take a bone shaving from the skull in case it was needed. So that was used in conjunction with a dissolvable plate to reconstruct the nose. Finally, he had to remove the tract that ran from the bridge of the nose to the tip. This was closer to the surface of the skin than he expected. Rather than tunneling to remove it, he just extended the incision. Thankfully, because it was so superficial, he didn't have to distrurb the septum.

Jake is in the final stages of being stitched up and will head to recovery. Our next hope is that recovery goes well enough for the breathing tube to be removed quickly.

What a wonderful day this has turned into! I spent weeks dreading but it has all quickly turned into celebration. The end of the road is near...still bumpy...but nearer.

3:00 PM
We had the opportunity to speak with the neurosurgeon. The hole in the base of Jake's skull was bigger than he expected. He was not surprised because he said it is common to not get the perfect view from the scans. The dermoid actually extended into the covering of the brain and mushroomed out between the halves of his brain. It was also bigger than expected. The wonderful news is that he was able to remove all of the mass, save his sense of smell, patch the covering, and replace the bone flap. While he stitched the bone back in place, he also used a couple of dissolvable plates to prevent "denting". The plates and screws will be completely absorbed in 6-8 months.

Otolaryngology is still working on the resection of the sinus tract that had extended into the cranial space. The neurosurgeon was in a hurry to get to the OR to "keep them straight".

We are now waiting on the final word and are very anxious to see our little guy.

1:50 PM
Neurosurgery completed their procedure around 1:10PM. The unofficial word is that everything went well. They were still in the process of closing, anticipated to take about an hour. Shortly after, our neurosurgeon will be up to give the official word and much more detail. Otolaryngology will begin their procedure next. Last I heard, that is expected to take 2 hours.

Thank you for all of the love and prayers to this point. It has really helped keep all of us strong and faithful.

12:30 PM
Hoping no news is good news!

9:15 AM
We just heard from the OR and they are just getting started. It is my understanding that it is supposed to be a 7.5 hour procedure.

7:30 AM
Scott and I had barely gotten settled into the waiting room when Jake's Otolaryngology surgeon gave us a personal visit because he missed us in pre-op prep. He told us that Jake was doing great, sleeping away, and everything would begin shortly. He just wanted to make sure we didn't have any more questions. I just know that Jake has an amazing team taking care of him!!

6:00 AM
We arrived at the hospital and got checked-in. Jake was being very good and patient considering we picked him straight out of bed and into the car. Next they called us back to talk to our anethesiologist. She explained more of the procedure and answered any of our questions. Soon they gave Jake an oral "groggy" medicine. It wasn't long before they were ready. I took him back to the OR. He was quite relaxed when I took him from Scott, so it didn't take long for the gas to take effect. He went down brave, quiet, and strong. Prayers be with him. We have been prepared for a 12-hour day. They will try to give us updates from the OR frequently.

Pre-Op @ Home

 

 

 

Pre-Op

Jake's pre-op appointment went well today. I was a little nervous because he got a running nose on Monday. I was almost sure that it was just allergies, but I didn't know how picky they would be.

We met with neuro-surg to sign some consent forms. Then we went to the lab for blood work. They drew from his arm (first time ever) and he didn't even flinch. I was so proud of him. They were checking his blood count, clotting factor, and presence of infection. Everything came back normal. All they found was an immune reaction to allergens.

Next we met with the department of anethesiology. They listened to his lungs and explained a little about their piece of the puzzle. We will meet with the anethesiologist assigned to Jake in the morning.

Then it was back to neuro-surg to review final details and get the offical thumbs-up on the lab work. Everything looks good to go. We are scheduled for surgery at 7:15AM tomorrow. The procedure is scheduled for approximately 12 hours. I will do my best to post updates as they come tomorrow.

Teasing Josie

Josie is really the star of this one. Jenna is teasing her by playing with the drawer where we keep her balls and toys. She is just desperate for someone to play with her.

Raspberries

Isn't she just darling!?!

Mega-Mobile

My challenge to you is to count the number of movements Jenna makes in under 2 minutes...and GO!

Spring has Sprung