A NUMBERS GAME

During high school and college holiday and summer breaks, I worked in a toy store. I worked in Customer Service. As dolls, toy cars, and battery operated toys were returned, I very seldom had to check the price in the computer. My memory for numbers has always been good, and most of the time I would simply remember the price. My colleagues sometimes tested my price knowledge, since they thought it was a useless skill to have. Before the age of cell phones, I would remember all phone numbers I needed. No need for an old fashioned phone book.

This number memory of mine has come in handy when we're in the hospital. Everything is a number. The chance of  an error in a hospital setting is present. It's a human process after all. I am just thinking about the numbers associated with our own boy:

• 82 is the number of ml of fluids per hour. When IV fluids and formula are mixed, it's easy that a little calculation number suddenly decreases or increases the magical number 82. 82 adding up to 1968 ml of fluids in 24 hours.
• 50 medications in 24 hours, every single medication with a different dose. Some medications have a different dose depending on the time of the day. Some medications we change the dose daily depending on how Jacob is doing. Some medications having a new concentration as they are changing from oral to IV. 
• Measuring every diaper to make sure Jacob's fluid intake matches his fluid output. Stool above 600 ml needs to be replaced with Pedialyte or IV fluids in a 24 hours period.

During this last hospital stay, we had a medication error. Jacob received one medication twice. He received it both orally and IV. We knew how it happened, and under the circumstances, neither Joakim or I were surprised. We also knew that the dose was safe for Jacob. He would not have an adverse reaction from it. Still as a parent, you do want to know when a medical error happens. Big or small. 

We also found out we had a "near miss"event. A medication came up from the pharmacy, and the nurse did think the medication looked slightly different than the previous dose. Her suspicion was confirmed by the pharmacy. It was the wrong medication sent up. It had a slightly different name than the medication Jacob takes for his epilepsy. A "near miss" is a good thing. There was an error, but the error was caught before it reached the patient.

One of the best things to be home again is that I can lower my guard. As Jacob is in the hospital, it's the heavy weight of having a sick boy. It's very seldom straight forward to treat Jacob or he would not be in the hospital. I also feel we have to be that extra layer of protection for Jacob, checking every dose of medication, every pump of fluids, and being that extra set of eyes. After all, we know our boy best. As silly as it is to remember random phone numbers and toy prices, it's a blessing I have Jacob's numbers engraved in my head, Nevertheless, it's exhausting.

Today, we have been home for a week. Jacob's incision is continuing to heal. As always, it probably will take a little longer to heal than for you and me. Jacob's tummy still isn't great. We are using our cards wisely, and trying to keep our boy comfortable and HOME.

Sincere thanks to all of you who cheered our boy on in the hospital. We hope Jacob can continue to stay home, so we can keep the numbers game in our home court.

Love, Maria.

IT'S NEVER A SPRINT, ALWAYS A MARATHON

If you are Jacob, you run a marathon every single day. If he's lucky, he might get away with a half marathon once in a while. But most days, Jacob is literally running a marathon. That is the best way to describe what it takes to be Jacob. Jacob's power house (mitochondria) isn't working. To breathe, to eat, to simply live takes a lot of energy, energy Jacob doesn't have a multitude of like the rest of us. Jacob knows no other way than approach each day like a marathon, often on very little sleep. This is what makes him our amazing boy. Jacob came home on Monday afternoon. Tuesday, he was back in music therapy bossing his music therapist around and asking "mom to be quiet" with his talker. Our boy felt better again.

Everything in Jacob's life is a marathon, it's never ever a sprint. Looking back at the last two hospital stays, my nerves got seriously tested. Not once, not twice, too many times to count. I felt I was on an emotional roller coaster. Every time I lowered my guard, I had to quickly rally again for a new emergency situation. Running is my stress release. On Saturday afternoon, after the big blow of Jacob's medi-port possibly not working less than 24 hours after surgery, running didn't really work for me. I did get through my 6 miles, but I felt so weak and so slow. My mind and body were not in synch.

On a positive note, Jacob's incision from surgery is healing nicely. I must say Jacob has shown very little pain from the actual surgery. It's really odd to be able to feel Jacob's medi-port under his skin now. With the old port being so deep and covered by lots of tissue, it wasn't easy to "feel" it, nevertheless accessing it.

Jacob's GI issues are definitely a marathon, maybe even a 100 miler. It took us three long years with many hospital stays to get Jacob's ulcerative colitis under control. Dysmotility is a daily struggle in this house. We have our weapons to help Jacob pass stool, and the plan of action can change multiple times per day. To stay on top of Jacob's stomach issues is absolute key to keep Jacob feeling well. The question of the day is "did Jacob poop?"

After the endoscopy, the biopsies and more lab work, GI is not sure if Jacob has pancreatitis or not. He could have a new diagnosis of micro lipase. This would mean Jacob has elevated lipase, but not pancreatitis. Before we know for sure what we are dealing with, it will be hard to have a long-term plan in place. We came home with new orders on how to better manage Jacob's distention that can get so bad it even impacts his breathing and gives us a direct ticket to the Emergency Room and a hospital bed. I am hoping and praying we will be able to manage Jacob's tummy from home until we see Jacob's GI doctor mid March. At that point, we are hoping to also discuss more of a long-term plan for Jacob's stomach once again.

Life with Jacob, and life in general, is not a sprint, it's a marathon. It’s about never giving up, about persevering, of finding resilience. It is about pacing ourselves, to take things “one mile at a time”, to gradually find our way through life. Lately, I have been pushing through life too hard, and it’s time to cut myself some slack (easier said than done), and finding my pace again. This is to Jacob's marathon, and for our boy to catch a necessary break.

Love, Maria.

I WANTED TO CRY...

This is Jacob earlier today. He was sitting up watching a movie, and he just did wonderfully after surgery. I was thinking that if it weren't for GI, he should be going home today.

So, we have an internal joke with the medical team that Jacob leaves all the excitement for mommy. It has definitely been true for the last two hospital stays. When Joakim is here, everything is smooth sailing. I take over, and suddenly we have a medi-port not working, concerns about a blood clot, choking on dried secretions and the list goes on....

Today was no different. Jacob was getting a bath, and as we were cleaning him I noticed blood on his arm. Looking closer, we could see blood coming from the new port site. I honestly wanted to cry...It was quickly determined that the blood came from the port site, not the incision. Surgery was called, and they didn't want to touch it until a line study was performed, so we knew if the port was working or not. Jacob was put on Pedialyte instead of his IV dextrose. His glucose dropped once again. The team was concerned to give him glucose through the g-tube due to some ingredients Jacob might possibly be allergic to. Since he had tolerated orange juice last time, that's what they used this time again. As we were waiting for the line study to happen, they wanted an IV line. Once again, it was confirmed that Jacob can't be without a medi-port. Anesthesia couldn't even find an IV under ultrasound!!! His veins are just so tiny. Anesthesia was starting to talk about emergency surgery tonight, and I was not just ready to cry, I was ready to puke. I kept my calm, but on the inside, I just couldn't believe this was happening to our boy.

By now, I know a line study can't happen after 5 pm if not both attending doctors agree. Luckily, this happened quickly. We rolled down to radiology with orange juice and steroids on board. Luckily, the radiology doc was the same one who placed the last needle in his port under camera. He once again took all the time in the world to make sure the port was truly functioning. The absolute best news of the day is that the port is working!!! As he was getting the line study, we could see blood around the port again. 

The team talked to Surgery and Radiology, and they were concerned that maybe the needle was slightly kinked. The charge nurse re-accessed Jacob tonight, and it looks fine. We're now hoping that we have had the excitement for the day and night, and that it was the needle. Jacob's IV dextrose is running again.

In the middle of all the port excitement, GI came by. All biopsies from yesterday's studies look normal. GI wants Jacob to start feeds tomorrow and slowly work himself up to full feeds. This means we're probably going to be here for a little longer than we had hoped for. I do still have some concerns around Jacob's lipase and his stomach, but tonight I am just going to hope for the port to continue to work and that tomorrow will be a new bright day with a good port and a good stomach.

In the middle of me getting my nerves tested once more, I remind myself, it's Jacob who endures it all. The nurses are amazed with how he rolls with everything. It looks like he has been in a fight looking at his bruised arms. He has been poked more times today than anyone should have to go through. With his blood sugar being checked every hour, he has a different colored band aid on every finger.

Jacob is finally sleeping, and I think I will join him. To a new day.

Love, Maria.

JACOB ROCKED IT TODAY

I am sitting down and starting to lower my guard slowly. These last couple of weeks have been a whirlwind. After I had a good conversation with Jacob's anesthesiologist yesterday, I felt better about today. We had the A Team lined up for Jacob's planned surgery.

I brought in Jacob's lucky blanket today. Jacob received this blanket in 2009 when he was seriously ill with sepsis, pneumonia and pseudomonas. I have a picture from that time with Jacob smiling as he finally got extubated and having his lucky red blanket. As I pulled it out of one of Jacob's drawers, I realized how small the blanket is seven years later! Our boy has grown a lot.

As we were getting closer to surgery time today, I did feel I couldn't do much by standing around. As Jacob was in surgery, I was working away. That kept at least part of my mind away from the operating room. We had been told surgery would take an hour. As we passed the hour mark, I was starting to wonder what was going on. We could see on the board he was still in surgery. After an hour and half, the OR nurse called out to let me know they had started the surgery more than an hour late. Jacob had had one of his famous blowouts, and it had taken the surgery team half an hour to clean him up! It also took a good half an hour to get an IV line in Jacob. Despite the delays, Jacob was doing fine in the operating room.

GI came out first. They performed an endoscopy and colonoscopy today. After having done additional blood work, they are not sure Jacob has pancreatitis. They know his lipase is elevated, but the pancreas itself doesn't look inflamed and the additional blood work is not showing a clear pancreatitis. They are very happy no ulcers were found today. So, once again we're not clear what's going on with Jacob's stomach. They performed several biopsies, and we will find out more tomorrow. GI would like to once again start feeds slowly and ramp up over the weekend. We shall see how it goes. Joakim and I are still concerned that the same thing will happen as last time. We get Jacob back on feeds, go home, and then his stomach issues start up again. We have expressed our concerns, and hopefully Jacob proves us wrong.

The medi-port surgery turned out to be a little more complicated than they expected. His old port was not in the best shape and very deep, so the whole surgery did take longer than they had originally thought. It is beautiful to see the new port working without issues!

Our boy did very well transitioning from breathing tube to his bi-pap. It took him a little longer to wake up than they had expected, but he also had been under anesthesia almost the double time from what they had expected. He did wake up in the recovery room, and we could see he was in pain. With pain medications on board, he has been in deep sleep. He just woke up, and is now cuddling with Sarah. Jacob is sure our rock star.

I am so relieved. I was seriously worried about putting Jacob under anesthesia, especially with him being sick right now. We also had a couple of emergencies during our last hospital stay, and I was trying to rally myself for this to possibly happening again. I am so happy we have had none of that today. We're back on the 9th floor as the sun is setting over the mountains. It's a breathtaking view.

Thank you, thank you, thank you for all the love and support today. We have had messages from near and far all day long. At one point, I had to excuse myself to the nurse for trying to keep up with all messages :-

There will be wine tonight.

Much love, Maria & family.

EXHAUSTED MAMA

As I went grocery shopping over the weekend, I bought lots of vegetables. Our vegetables always go bad when we're in the hospital, since no one has time to cook. I was hopeful Jacob was on the mend, if not perfect, and was hoping to get back into the daily routine of cooking dinner. We also got caught up on laundry from the hospital stay and a few days of skiing (which was a great break). I knew this week was going to be busy with lots of work, doctors appointments and a medi-port surgery scheduled for Jacob on Thursday. I knew I was not going to catch much sleep until I knew the outcome of the surgery.

Since Jacob got home from the hospital last Wednesday, he was looking better but not perfect. He had days he slept more than normal, he had an elevated heart rate some nights indicating pain, and his stomach was still distended. Since we had an appointment with hematology Monday, GI had asked them to check a level of lipase (indicating pancreatitis) to make sure it was trending downwards. When the hematologist came back in with lab results, he told us Jacob's blood levels are good to go for surgery. He did add that we probably should call GI before going back home, since he had an all time high lipase level...

GI decided to admit Jacob for gut rest once again. They wanted us to go to the ER, since the 9th floor was completely full. Jacob's hematologist didn't want to hear the word ER, and instead placed him in the infusion center and ordered fluids and medications. The care and attention of the oncology nurses were amazing. I definitely felt we got the hospitality suite this time. That the oncology nurse was able to also access the malfunctioning medi-port on the first try gave her a gold star in my book.

Jacob does look better tonight after been on IV fluids for 24 hours. We also have a plan with GI. They are concerned that Jacob might have developed chronic pancreatitis. They are doing another lab study, and if it's positive, we will need a CT scan of his pancreas. If the pancreas looks fine despite elevated lipase, they are concerned that Jacob has developed ulcers in his stomach. To rule this out, we would need an endoscopy which would happen at the same time as the medi-port surgery.

The Surgery Team knows Jacob is here. We have not yet gotten the green light that surgery is on for Thursday. GI gave them the green light, but it is ultimately up to the Surgeon if he is comfortable performing the surgery with Jacob being sick. We should know tomorrow for sure.

I am exhausted. We're on week three of being in and out of the hospital. We're trying to keep up the normalcy of life but it's getting harder after three weeks. I also know this hospital stay won't be a quick in and out. It's not just a little virus we're dealing with. The GI doctor spoke the dreaded words"chronic pancreatitis" this afternoon. It took us almost three years to get a good handle of Jacob's ulcerative colitis due to his underlying mitochondrial disease. I feel we're entering yet a GI monster with his pancreas not feeling well. And it really hurts to see our boy in pain. He is such a tough cookie, but pancreatitis hurts. The oncology nurses are used to manage pain aggressively. They were astonished by Jacob's ability to tolerate pain yesterday.

There is always a little bright light. My sleep deprivation and exhaustion have taken the edge of my worry for Jacob's upcoming surgery. It's there, but it doesn't consume me.

Tonight, we're hoping for some sleep. Tomorrow, we hope we get the green light for surgery. As much as we dread this surgery, we know Jacob needs a new medi-port.

Love from the 9th floor,
Maria.

MY DAD

Kind. That is the first word that pops in to my mind when I think about my dad. He is an incredibly kind man. He has always supported me no matter what I decided to do in life. He is intelligent, big hearted, and with a good sense of humor. He goes with the flow, and is extremely flexible. When Sarah and I picked him up from the airport end of January, I was so happy to see him again after being apart from over a year and a half. Luckily, we can take up where we left off.

We had a very special time with my dad visiting before Jacob got sick, and I didn't want to forget about the two very special weeks we had with him. Life was busy as usual in our home, and sometimes it can be stressful to have a guest in our house. Not with my dad. He is very independent, and helped us wherever he could. Jacob's nurses were surprised to see him venture out in the snow storm to go grocery shopping, shovel our front porch, clean our house, and make us dinners. I guess that's who my dad is. He finds his place in any environment, and just knows how to be helpful.

We had great conversations over dinner and Joakim and him were sharing a whiskey at night. Sarah loved that grandpa was in the house as she came home from school, and Jacob loved to show off on his talker and beat him in bumper cars on his IPad.

We also took grandpa to Celestial Seasonings, and he really enjoyed the tour of the tea factory. I know Jacob loved getting out of the house on this warm winter day.

To have Jacob turn ten years old was amazing. It made it extra special that my dad got to celebrate this special day with all of us and Jacob's circle of friends. He also helped me to get ready for the party, and he was the pizza chef of the day!

The last day, I tried to finish up work early. I then took my dad to our gym. My dad got to swim, spend time in the hot tub and steam room. He had a very relaxing time, and we then had lunch in the cafe. What made this Friday afternoon so special was that we just had great conversations. I think by the end of the day, that is what I love most about my dad. I love to share my life with him, even if we unfortunately see each other way too seldom. Jacob and Sarah also don't see their grand parents often enough, so when it happens, it is great when you see moments of quality time. I loved seeing Sarah's face when she realized her grand pa is a true math and (plasma) physics wizard. I loved to see my dad's amazement when he realized Jacob could talk, even if he didn't completely understood how his communication device works.

We ended my dad's visit with a dinner at the Dushanbe Tea House. It was a delicious meal with many laughs and good conversations. I also loved to see how Sarah opened up to her grandpa, and even got him a Facebook account he couldn't say no to because of her setting it up for him.

As my dad left, and we went into a very stressful hospital stay with our boy, I do think I had a little extra energy from my time with my dad. He filled my bucket.

Jacob is HOME tonight. He is doing well in his own bed tonight. We had a vacation week planned in Breckenridge this week. Our nurses all wanted us to still go. As Jacob got home, they took over Jacob's care so Joakim could join Sarah and I tonight. We're spoiling our girl, and are thankful for Jacob's nurse team. They are simply the best!

Love, Maria.

WE ALL NEED A DR E.

I know I made some of you a little worried with my last post about medi-port madness. With my strong type A personality, I do need a plan. When I don't have a plan and can't make a decision, my mind goes crazy on me.

Since my post, life has gone on in the hospital and at home. The medi-port and Jacob's temporary IV line are both still mysteriously working! I think we all know it's time to let go of the seven years old port, but right now it's working again. Jacob has done amazingly well coming off gut rest. By 10 pm tonight, he will be completely back on his g-tube feeds and not needing any more IV fluids.

We finally made a decision with Dr. E. last night. She came to see us again, and together we decided Jacob needs a medi-port that works all the time. We can't go through the drama we had in the last couple of days again. Dr. E only wants the A Team to perform the surgery. She still feels the surgery is a big risk for Jacob, and rather wait for Jacob's anesthesiologist to be available than just get in first thing tomorrow morning. We found out that Jacob's anesthesiologist is not available tomorrow. The medical team is now looking to see if he's available Tuesday morning. If not, we will be looking at a surgery date the following week. I can't tell you how much I trust Dr. E, and how she always has our back. Friday night, she came up to see Jacob with five minutes notice. We even made her late to her big concert performance that night (the concert had to start ten minutes late). Talk about patient care and a very big heart for our boy.

If Jacob's labs look good in the morning and he is still tolerating his feeds, they might discharge us tomorrow. The pancreatitis might be at a point where we can manage it at home. I'm hoping but not holding my breath until I see it happening.

It would be so good for all of us, if we could take Jacob home and do some vacation this week. Sarah has struggled with this last hospital stay. She was pretty sick herself this past week. She got little attention, and also didn't get to see her brother. She also can read our stress levels pretty well by now. I didn't make it home in time for her volleyball practice Friday due to waiting for the Surgery Team, and that really bugged her. I loved that her volleyball team all wore their Team Jacob shirts to practice that night. I know Sarah so appreciates it, even if she's a little uncomfortable to be put on the spot. We hadn't had time to update her about the surgery, so she felt she didn't have much answers for her team. It's still so great for her to have this support from her coach and volleyball team. We're very grateful for the support.

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Grandpa wearing the Team Jacob volleyball shirt.

Sarah was so happy to finally see Jacob yesterday. She just couldn't stop smiling and kissing him. The bond these two have is something special and rare, and just wonderful to watch as a parent. Sarah also needed some mommy time. Joakim gave me the best Valentine's present. He stayed two nights with Jacob in a row. I could truly catch up on sleep, and also take Sarah to the movies last night. It was really good all around.

This Valentine's Day did sneak up on me. We typically don't make a too big deal about it, but I typically do something for the kids and we have a nicer dinner at home. This year, I hadn't even bought cards or thought about gifts for anyone. Luckily we had friends who took care of us. Last night, we were greeted by gifts, chocolate, wine, and girl scout cookies by dear friends thinking about us. My girl loves surprises like that. She couldn't stop smiling! We love our friends who have made sure our caffeine levels have stayed high all weekend long in the hospital as well. You know who you are, and know it means the world to us.

Tonight I feel so much better. There is a Plan. I know it can always change with our boy, but there is a course of action. We have gone two days without emergencies and I have actually been able to sit down.

Let's hope this Plan sticks, and thank goodness for Dr. E giving us the clarity we so needed.

Happy Valentines Day! Love, Maria.