HOME?

We got discharged from the PICU last night with a big caveat that we had to draw labs every morning, and follow up with hematology daily until we could see them outpatient. Jacob's white blood count has been extremely low as well as some other values related to the production of white blood cells. Since they are so low, they also didn't want him in the hospital where he very easily could catch an infection, which would not help Jacob to feel better right now. The PICU was afraid to transfer him to the pulmonary floor where all the respiratory infections live.

At 6 am today, I was in the car on my way to Children's with tubes filled with Jacob's blood. As always, they had some issues locating all the orders, but by the time the sun started to rise I was on my way home again.

Early morning, I found out that Jacob's white blood count was low once again. I missed the phone call from the hematology doc on call, and in the middle of a very busy day with Jacob, I wasn't sure if he would once again be admitted to the PICU or not. It took a whole day yesterday to get him discharged, so the thought of being right back where we started yesterday was not an appealing thought.

As we were waiting for hematology to call back, I decided to at least get Jacob out in the fall sun for a bit!

We are tonight very thankful we will all get to sleep in our beds. I will be up before the sun once again to deliver labs, and we will see where the day takes us!

And my girl finished our purple pumpkin tonight.

Love, Maria.

A SUNDAY UPDATE FROM THE PICU

The one thing I have always tried to find in my writing is honesty. I will share both the good and the bad. I am generally a positive person, but this week was tough. Jacob started to not be himself a week ago with a long seizure coming out of the blue. Each day, he showed more and more symptoms of not feeling well, and Friday it all escalated and I felt I was completely out of control. Jacob's brain might be bleeding, meningitis needed to be ruled out, intubation was on the table, GI was aggressively thinking about scoping him once again. I knew I had a very sick boy, and somewhere deep inside I was not sure if Jacob was going to pull through.

I am very delighted to say Jacob is doing much better today. Jacob's labs show sign of a viral infection. That would explain him getting sicker each day. What also happened is that his seizure medication Phenobarbital didn't get metabolized in his liver very well. It was at a record high on Wednesday, and still very high on Friday when we got in. This would explain Jacob being so extremely lethargic. He just couldn't stay awake with so high doses in his blood. The only way they can explain this is that his liver was working extra hard fighting this infection, and therefore couldn't also spit out his seizure medication. His level of Phenobarbital is back to normal today, and he looks overall pretty good actually. As the attending said, any other kid she would have sent up to the floor today, but Jacob is Jacob, and she wants him on close observation at least one more night and day.

We are also not so sure his colitis is flaring up any longer. He does have diarrhea, but he is also on IV antibiotics. Right now, we're not sure if the diarrhea is due to him being on antibiotics or colitis. No scoping of his colon today, and if he continues to do well, we will see GI outpatient next time.

This life with Jacob is a little bit on the crazy side, but I am so thankful for our fighter boy and him doing so much better this afternoon. Right now, he is watching a teenage TV show with his sister in bed:

Jacob got to sit up today, and enjoy our mountain view:

Jacob got to enjoy the ICU Spa this morning:

Sunset from our room last night:

We are hoping we can take our boy home soon again!

Love, Maria.

MY GUT TELLS ME IT'S THE GUT

From monitoring Jacob at home yesterday, it was time to bring Jacob to the Emergency Room this morning. He slept all night, was awake for an hour, and then went into a very deep sleep. Nothing would wake him up. That is a very scary place to be.

The emergency room crew was not happy to see Jacob so lethargic and sleepy. More tests than normal was done to figure out what was going on. Blood draws and stool samples, x-rays of his chest and abdomen, CT scan of his brain to make sure there was no bleeding, spinal tap to rule out meningitis. He slept through all of that, which is an art when you know the pain involved as well as the number of transfers we had to do to get all the x-rays and CT scan done. All his specialty doctors were called to see what ideas they would have for Jacob looking so ill today.

After a couple of hours, Jacob was brought up to the PICU. One of his seizure medications is extremely high in his blood right now. Nobody is exactly sure why that is the case (no change to the actual medication), but that could definitely lead to him being sedated and Jacob having a hard time keeping his body temperature up. It could mean that his liver is working extra hard to fight an infection, and just doesn't have capacity to also spit out his seizure medications.

My gut tells me that it is something going on with Jacob's gut. He shows all the symptoms of being sick as when he developed colitis last year. Ironically, we are in the same room in the PICU (for us it will always be the colitis room) and the same GI attending who scoped and diagnosed Jacob a year ago. He has a good memory, and immediately said that it was in this room we had the same conversation a year ago. They are going to wait for all test results coming back tomorrow. If nothing shows up (which I feel they are already expecting), they will scope him again Sunday, and see what is truly going on with his colon and abdomen. Our boy is a risky boy to scope, so our GI doc is thinking through strategies tomorrow on how to best proceed.

We are on high alert. I am seriously worried about Jacob. His core team of doctors are very involved, which is always great, but it is also a confirmation of the seriousness of Jacob's health right now. Dr. E. wants to be updated all weekend of any changes. She is typically pretty cool with Jacob, but not this time. Dr. C. is coming in to see him this weekend. We also hope that the doctors won't miss anything. What about if it's not the gut, and something else? Or something else too?

We are only hoping we can give you a better update about our boy soon. Right now, the PICU is the only place for Jacob to be.

Thanks again to all of you who are reaching out to us. We never feel alone on this journey.

Love, Maria.

MY HALF PAINTED PUMPKIN

This is our half painted pumpkin. Jacob started painting the pumpkin with Sarah exactly a week ago. He got tired mid way through the project, and had to rest for a little bit. Since last Friday, there has not been a single moment to finish painting our purple pumpkin (to raise awareness for epilepsy).

Our half painted pumpkin is a good symbol for how our lives feel right now. Half, not full. Just trying to barely get by each day. Monitoring Jacob's vitals, managing Jacob's seizures and figuring out if he is seizing or not (never an easy task with our boy), watching Jacob's breathing, monitoring Jacob's skin color, trying to fit in all his care in the middle of watching and monitoring a sick boy. Being on the phone with Children's, waiting for a phone call back from one of his doctors, drawing and delivering labs to Children's, being at Children's for daily checkups. Knowing that it is just a matter of time before we have to take Jacob in once again. It can be tonight, it can be tomorrow morning, or any time after that.

The way Jacob looks today, we start to think that his colitis is starting to act up. His poop actually looks ok, but there are so many similar signs from this time last year. He is lethargic, he is seizing, he is sleeping a lot, his tummy is distended, and his heart rate is high. Jacob's GI doc ordered lots of labs and stool samples today. The GI attending knows Jacob will come through the ED any time he gets sicker. We are waiting, and we think tomorrow will be the day that he is either doing better or we will once again look to the doctors at Children's to help us figure out what exactly is going on with our boy and what we need to do next.

Sarah's favorite spot in Jacob's room is on his couch. She loves to hang out on the couch chatting as we're working with Jacob. Tonight as I was getting Jacob ready for bed, Sarah had found her normal spot. "Mom, colitis means a long hospital stay, right?" She is as tired as we are, but she also knows that whatever Jacob needs is what we will do.

At the end of nurse Gemma's schedule for tomorrow, I wrote: we will see where the day takes us today. Jacob is in charge. The one thing I know is that we won't be painting purple pumpkins.

Love, Maria.

MIND AND BODY

 

"The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles, but to live in the present moment wisely and earnestly." 

Buddha quote

I ended the week with a massage. A massage I had rescheduled multiple times since August. The first question I was greeted with was about my son, how was he doing? I had rescheduled a few too many times due to our hospital stays.

As the massage therapist started to work on my shoulders, she immediately asked how long it had been since my last massage. 20 days in the hospital in the last month was my answer. It was that true good pain when the therapist truly gets into your knots.

This is what happens every time we have high stress with Jacob. I keep my calm, but the stress builds up in my body. It starts with the neck, it transfers to the shoulders, and then it hits the upper back. Every single time. It doesn't help to have slept on the hospital couch for way too many nights. My body is hurting.

High stress with Jacob keeps my mind very busy. I am a worry monster, and when I do know something is not alright with our boy, my mind keeps buzzing. It is also hard to have new nurses and residents caring for Jacob every 12 hours, many who are meeting Jacob for the first time. There are misunderstandings, and we feel we are "on" around the clock to make sure Jacob receives the care he needs. It is stressful, and I am glad Joakim is ready to listen when I need to get things off my chest or I will burst!

Jacob did come home Tuesday night! Home, but still very much hospital sick. We are doing bi-pap trials at home, which is a first for us. We typically stay in the PICU for bi-pap trials. This means Jacob's lungs are not strong enough to expand without the pressure of the bi-pap opening up his lungs when he breathes. We have an elaborate schedule for when Jacob is on and off the bi-pap for over a week's time. Looking at our bi-pap trial schedule, we would have easily stayed another 1,5 weeks in the hospital. We weighed our options carefully, and felt that we could manage this at home, since we know there is no place like home for our boy. We also know it can take weeks or even months before Jacob can fully recover this time.

It has been a very busy week. Wednesday, I was honestly questioning if we had done the right decision bringing Jacob home. There was no time to eat or go to the bathroom due to the care Jacob needed. Little by little, Jacob has taking steps in the right direction. It might not always be obvious day by day, but he is definitely better tonight than a week ago.

The reason we bring Jacob home early from the hospital is that in the middle of intense care, we find our moments of happiness, family time, and gratefulness for Jacob's amazing strength. Each moment eases my body and soul.

Jacob getting outside for the first time in one month time:

Jacob hard at work making his purple Epilepsy awareness Pumpkin project:

Send positive thoughts, vibes and prayers that Jacob can continue to stay home!

Love, Maria.



ONE DAY AT A TIME

We made it out of the PICU late Friday night! Jacob slept through the whole transfer from PICU to the floor. After 12 hours of sleep he woke up on the top floor of the hospital with a stunning mountain view.

Jacob was doing great on Saturday! We made lots of changes to get him closer to his home schedule. He was up in his wheel chair most of the day, and was on oxygen nasal cannula all day long. The talk on the floor was that we were going home on Sunday...until his chest x-ray results came back. Jacob's lungs were getting close to collapsing...this has happened before, and Jacob gets very sick. We caught it in time, but it is amazing how Jacob compensates for not breathing well. The doctors and we had no clue. It surprised everybody.

With Jacob's lungs not expanding as they should, Jacob was back on the bi-pap once again. It felt like we were taking several steps in the wrong direction. Sunday, it was all about making sure Jacob's lungs stayed open. This morning, they were doing a repeat x-ray to see if it had worked, and the x-ray does look better. It is not a perfect x-ray, but it is better. Today the plan was to continue to give Jacob's lungs a chance to recover.

We are tonight not sure how long it will take Jacob to be ready to come home again. It might be another day or two if we're lucky, it might be longer. What scared me is that we had absolutely no idea Jacob was moving in the wrong direction. I realize this is exactly what has happened to Jacob many times. He looks good, but he is not, and then when his lungs have been working on overtime, they collapse and he gets acutely ill. There is one thing worse than a long hospital stay like this one. It is when we get home, but have to return once again due to Jacob getting sicker. So, we are sincerely hoping Jacob will be able to stay home when he finally makes it home. There is so much about fall we all want to enjoy with him.

Until then, one day at a time.

Love, Maria.

STARTING ANOTHER WEEKEND IN THE PICU

It is Friday evening in the PICU. I am curled up in bed with Jacob. We have a stack of books to read before bed time. We are then hoping for an ok night. Jacob has shifted his days and nights, since the PICU never sleeps. He is receiving vest treatments and suctioning every 4 hours around the clock. Then there is always a medication or feeding pump beeping or god forbid the pulse ox. Jacob typically catches a few hours of sleep before midnight, and is then ready to start his day around 3 am. There is no understatement that mom and dad are sleep deprived by now.

Jacob has been doing a little bit better the last two days. His secretions are better during the day, not close to baseline, but better from a week ago. He has been able to sit up in his wheel chair the last two days, which is something Jacob has enjoyed very much. That bed gets boring for anyone after 10 days straight! We don't know why, but as soon as the evening comes around he has excessive secretions. This makes it very hard for our boy to rest.

We were supposed to move up to the floor today, which means a step closer to getting home. Unfortunately, the floor is full! No bed available for our boy. We are hoping one will open up tomorrow, but in general there are less discharges during the weekend. Joakim and I have gotten pretty good at predicting Jacob's discharge dates by now. With how Jacob is looking, and with the IV medications on board, we were hoping for a discharge Sunday, at the latest Monday. We are hoping us staying longer in the PICU won't lead to a longer hospital stay...

In the middle of us all getting pretty done with this hospital stay, we can't thank you all enough for your visits, dinners, goodies, cards, phone calls, texts to check in on our boy and the rest of us!

Since we had our first snow fall in Denver today, it is timely that Jacob received two hats this week, both from two of our Mito moms.

Jacob is ready to cheer on the Broncos! Gosh he was puffy this day from too much IV fluids.

What about a customized Colorado crochet hat with a "J" in the back?

Today, Jacob got a special visit. His speech therapist Brittany came to visit him on her day off. Jacob told her that he wanted to color and play bumper cars on his IPad. And as always, he told her he loves her, but also making sure she knew he was "all done" with his talker, and wanted to play on his IPad instead!

And yes, Jacob does need a hair cut!

Cross your fingers and toes we are home next week, but more than anything that Jacob can shake his pneumonia and respiratory virus. We still have a way to go to get back to his baseline. My crew knowing my impatient soul reminds me we need to give Jacob time to heal this time.

Love,
Maria.