A SIGN OF SPRING

Today was a beautiful spring day in Colorado. The sun and air temperature were just right. It was warming our pale skin longing for sun and warmer days. The day was meant to spend outside.

We were not the only ones who thought going to the zoo was a brilliant plan this spring break Friday. Typically we can find handicap parking easily, but not today. We were circling around the garage for as long as it took us to drive down to the zoo. Finally, we got a spot!

Sarah brought a friend today. She hasn't been around Jacob that much. I could see that her eyes got bigger as she saw us completely changing Jacob from head to toe after an accident in the car. Sarah frantically trying to wipe Jacob's wheel chair clean, so he could use it again. Her friend was amazed with the load of supplies we have to bring to take Jacob anywhere. Today, we had loaded the van with Jacob's wheel chair, stroller and his red wagon full of supplies!

Selina and family met us at the zoo. Nothing faces them. We were seriously late from trying to find parking, and having a big diaper change, but never ever that it would bother them. We haven't been to the zoo in a very long time, so it was nice to get re-acquainted with all the animals once again, and especially see the new part of the park for the elephants.

 

 

At one point, all the kids were having lunch and Jacob was having his snack of a water bolus with a seizure medication. In the middle of everything, things seemed pretty normal. All kids were content, and having a great day together. I'll carry that moment with me after a long winter with too many days inside. A little moment of normalcy with the sun on my skin.

 

We could have spent the whole day hanging out with our friends at the zoo, but unfortunately Jacob had an appointment with Dr. E. It was time to pack up the van, and head over to Children's. It was a good appointment. Unfortunately, we left with another round of antibiotics. Jacob's left ear looks yucky, and infected. We're also starting Jacob back on bi-pap at night. We have noticed increased sleep apnea in the last week, and we'll see if the bi-pap can help Jacob at night. Another sleep study is in our near future...I am not happy about this direction, but whatever it takes for our boy to breathe and sleep better. Jacob has had yet another growth spurt! He is getting taller and heavier...he's getting close to 60 pounds, our handsome!

On a positive note, Jacob seems to be at the end of this cold, and his colitis seems to be in remission once again. I'll leave you with this monkey who decided to entertain us over lunch!

To spring! Love, Maria.

WELCOME SPRING BREAK!

It's Sunday night, and we're all home again! The Colorado snow storm that rolled in Friday night made our Saturday discharge plans a little bit harder. Jacob and I woke up to winter wonderland Saturday morning. I knew that it would take us a long time to get home, and with Jacob needing frequent suctioning, we knew one of us had to sit with Jacob in the back. We decided that we would leave one car at the hospital, and all drive home in Jacob's handicap van.

Joakim called me from the road, and said that he wouldn't feel safe to drive Jacob home. Too many stranded cars along the highway, and very slippery road conditions. Our whole hospital room was packed up, and discharge instructions were printed...and change of plans! Joakim decided to stay with Jacob for another night, and Sarah and I drove slowly home.

As the day went by the storm started to slow down. Joakim decided to give it a try to get Jacob home after all. This time around, the discharge took forever! It was as if they had nothing ready for us to leave...By dinner time, we were finally all back home. Jacob feel asleep on the bean bag with sister.

Every time Jacob comes home from the hospital, there are lots of things to take care of. There are new prescriptions to fill, new procedures to follow, unpacking, and Jacob's nursing company has to come out to get services resumed. It took us all night to get back on track, but we were all thankful to not have yet another night in hospital beds. Jacob sure knew he was home again. He slept for 14 hours in his own bed!

Jacob is still not over his cold. This one will take a while. He needs oxygen around the clock, and his secretions are thick and more frequent. The good news is that Jacob is peeing again! We have not had to catheterize him, since he got home. Our big worry is if we're dealing with a flare up of his colitis. We're back to weighing every diaper, and doing stool replacements. We're waiting for GI test results that will tell us if Jacob has an inflammation of his colon. They increased Jacob's medications, which is supposed to keep him in remission. The big question mark is if he will need steroids again or not. We're all hesitant to start that again, but it might be what we have to do if things get worse or not are improving...

We know that this week will be full of follow up appointments, but I sincerely hope we can manage everything from home. The big worry is dehydration if Jacob's colitis gets out of control. We have been there, and we know how it looks.

And it is spring break week around here, so in between doctor's appointments, we're hoping to have some fun! We're hoping that Jacob can get to play with his friend Selina. Maybe a trip to the zoo if the weather warms up? I am hoping to get some special time with my girl, since she is off from school all week. And more than anything, we're hoping to not have to deal with the poop monster...

Have a great spring break everyone!

Love, Maria.

IT STINKS!

I have been cleaning my house frantically tonight. That is always a sign that I feel out of control. That I have no idea where this hospital stay will take us.

The surgery didn't exactly go smoothly. We accomplished what we needed, but Jacob sure struggled with his breathing. This doesn't make me feel very optimistic, if Jacob ever would need another surgery. Ear tubes is truly nothing in the world of surgeries.

And then Jacob did catch sis's cold. Jacob has confirmed rhino-virus. There is a long time since I have seen Sarah so sick, so in a way, I guess I should not be surprised to find our little guy in the PICU. The secretions are out of this world. He can't hold his oxygen when we suction him. Those dips in oxygen doesn't scare an ICU nurse, but sure would be hard to manage for a nurse up on the floor with three other patients.

And then there is the poop and the pee. Jacob hold his pee for 22 hours around the surgery. Noone knows why, but right now Jacob just doesn't pee the way he should. They have had to straight catheter him every afternoon to empty his bladder. It is already decided that we will go home with catheter supplies, so we can do this at home if needed.

And then there is poop. Jacob started having diarrhea after his surgery. It got worse yesterday. This morning on rounds, I was surprised how much he had pooped. The term stool replacement came up. The ICU team all knows Jacob very well, and we all agreed that this stinks! Noone wanted to mention the word "colitis", but it was on our minds. A Cdiff test was ordered. Well, my mother instinct makes me think that we might be out of remission. More tests were ordered this afternoon. We're seeing GI tomorrow. We want to aggressively treat any sign of colitis, since we know what slippery road that can be for our boy.

Having a few too many hospital stays under our belt, I start to feel that this hospital stay is definitely taking a wrong turn. We went from ear tubes to a cold to possible being face to face with the poop monster once again. It simply stinks! There are also just too many loose ends, too many tests pending, and most importantly a too sick Jacob to see the end of this stay. It also doesn't help that it is Friday tomorrow. There are just not as much happening in the hospital over the weekend. I think at this time, we are probably smart to not rush out of the ICU. If there is one place things happen, it is the ICU.

But it stinks. I had planned to take spring break off to hang out with the kids. Sarah and I were going to have some time alone. Now, I am just not so sure. But the biggest thing right now is to get the poop monster under control. That one still scares me.

Send some positive thoughts and energy to our boy! He sure needs it right now.

Love, Maria.

THE GOOD, THE BAD, AND THE UGLY

This was a long day. This was a day containing the good, the bad, and the ugly. The good is that Jacob now has ear tubes! Jacob was so very, very close to developing cholesteatoma, which is an evil cyst "eating" up your ear including your hearing. The surgeon told us that if we would have waited another month, Jacob would have developed the cyst, and we would then have been looking at a 5 HOURS surgery rather than 5 minutes surgery. "And that (cholesteatoma surgery) is a conversation that I never ever would like to have with you", said Jacob's surgeon. We have not been followed by ENT for years, but we're now adding that back to the mix of specialists that will frequently monitor Jacob's ears and making sure that the ear tubes don't fall out. We also found out that Jacob probably hasn't had much hearing on his right ear for quite a while. We are told to be a bit careful with noise in the coming weeks, since Jacob has gotten used to hardly have no hearing on that impacted ear.

The bad thing is that Jacob didn't like 5 minutes of anaesthesia a single bit. As they brought me back to Jacob, he was awake, but didn't breathe on his own. The nurse was doing a jaw thrust on him in order to keep his airway open. We were told to give Jacob time, but no matter how many hours past, he couldn't breathe on his own. The bi-pap was rolled into the post-op unit. It got better, but he didn't take breaths on his own, he needed the bi-pap to give him the pressure to open up his airway. His oxygen started to dip. His secretions were excessive. It was time to give deep suctioning a try.

And now to the ugly part. Deep suctioning doesn't bother me much after years of doing it daily on Jacob. This time, Jacob had no cough. Instead, he choked on his secretions badly. He desated to an extremely low oxygen level, and if I say Jacob was blue, he was blue. Before I knew it, the nurse hit the wall button to call a full code on him. Within seconds, I think we had 20 people around his bed working on getting his breathing back under control. No intubation was needed, but he gave us all quite a scare. This is not the first code for Jacob in the hospital. It has happened enough times for me to not remember how many he has had in his life. But this is one of those things that you can never ever get used to. You know it is deadly serious. Too many things happen within seconds, and there is not enough time for your brain to process them all in the moment. I feel I have pretty good nerves, but this one gets me every time.

After the code, we got some actions to get Jacob to the PICU. He wasn't safe in the post-op unit. The anaesthesiologist made one call, and off we were to the PICU!

The first thing the resident said when she entered our room is that she wouldn't allow Jacob to stay as long as he did in the fall with his colitis! I completely agree. I had started to wonder about Jacob's increased secretions and breathing issues, and wondered if he possibly could have caught Sarah's cold that has kept her home from school the last couple of days. PICU got their act together right away, and ordered labs, and a chest x-ray as quickly as only the PICU can. 

Since Sarah was sick today, I couldn't leave Jacob side for 12 hours straight today. Joakim and I both had a kid to watch over. When Joakim came to trade with me, I was exhausted. Rush hour traffic didn't help. No matter how tough the day has been, Sarah is always enlighten my day. We had good conversations over dinner, and Sarah finally was feeling better herself.

And my little stinker...he sure missed his dad today! Jacob seems to not be sick after all, but just have had a severe reaction to anaesthesia. Tonight, he is off bi-pap and breathing with just the help of a little oxygen. He is back on feeds, and seems to be doing pretty well. We can now only hope for a quiet night in the PICU, and maybe, maybe taking Jacob home tomorrow.

Today brought back to me how fragile Jacob is. I was worried about his surgery, but was thinking that maybe I was just a little bit out of surgery practice. After all, most kids go home an hour after ear tube surgery. For our boy, it meant he just couldn't breathe on his own, and a full code is just not something you want to ever be part of your day.

So, join me in hoping for a quiet night in the PICU, and Jacob being back to normal tomorrow!

Thanks everyone for your endless support for Jacob and all of us. It is very much felt.

Much love,

Maria.

WE'RE READY FOR SURGERY!

This time  a week from now, I will most likely have given you all an update on Jacob's surgery. It is scheduled a week from today. Bright and early in the morning.

Jacob is getting a second pair of ear tubes. No big deal, right? Many kids get that procedure done, and go home the same day. Your kids had it done or somebody you know. It was probably nothing dramatic or something you can remember in an instance.

When it comes to Jacob, you simply don't want to put the word surgery in the same sentence as his name. This is true for even a 5 minutes procedure. This is how long it takes to put in a pair of ear tubes. 5 minutes or 300 seconds.

So, why are we doing it? You can live without a pair of ear tubes, even if it means frequent ear infections. In Jacob's case, he has a severely retracted ear drum that was discovered during a regular follow-up appointment with Dr. E. It is so retracted that Jacob could easily develop cholesteatoma. Cholesteatoma is an evil little cyst that will "eat" your ear, lead to hear loss, and multiple surgeries. The surgeon can also not rule out that Jacob doesn't already have cholesteatoma until she is in there putting in his set of tubes.

So, team Jacob has been at hard work making sure that everyone is on board with his ear tubes. Dr. E. had the first say. She immediately supported this surgery, even if she is the first one to say no to surgery when it comes to our boy. She sees no way around it unfortunately.

Anaesthesia was next. We talked about Jacob's breathing. We talked about how Jacob has reacted to anaesthesia in the past. The fact that Jacob sometimes doesn't wake up for hours and hours after anaesthesia. We talked about pain management, and what happens if you load Jacob with too much pain meds or too little pain meds. We have been through both scenarios, and both scenarios are scary and painful to Jacob. We talked about the possibility of a breathing tube, if Jacob can't breathe on his own. Despite it only being 5 minutes, it is still full blown anaesthesia.

Anaesthesia also made it clear that they were not willing to perform this surgery, if we didn't get the go ahead from hematology. Jacob has had issues with blood coagulation, and anaesthesia wanted a plan for Jacob's blood in the case of bleeding.

We saw hematology yesterday. This is a new specialty for Jacob. We saw them inpatient in November when Jacob developed a Vitamin K deficiency, but it was a brief visit with a quick solution. When it is time to analyze blood, you need a lot of blood! I was honestly shocked how much blood was needed for his full blood analysis. Holy cow!

Between yesterday and today, I have had a crash course in Jacob's blood. Jacob's blood coagulation is abnormal. His platelet function is also abnormal. They don't find an inhibitor causing this. Unfortunately being on a multitude of seizure medications can cause this. It is not uncommon in any way. They then went deeper and looked at the different blood coagulation factors in Jacob's blood. Each factor is normal. This means that the risk of Jacob having bleeding issues during the surgery is minimal. No extra precautions are needed from hematology for his surgery. Phew! We need to go back and see them in 6 months to repeat a full blood analysis, but that's it!

Jacob's ENT surgeon said today that she is all ready for Jacob. She wants him to go straight to the PICU after the procedure, and I think we're all fine with that. Just in case. For everyone's peace of mind.

Am I still nervous? Am I still going to be on edge until we have this done? I will, but I honestly can say that we couldn't be better prepared.

On a lighter note, Jacob had his 1-year mark of bone treatments yesterday! It is a year ago that we found out about Jacob's broken arms and T4 wedge fracture. Since we found out about Jacob's osteoporosis, we have had no more broken bones and our boy is doing weight bearing in his stander daily!

I'll end with some photos of our boy from the past week!

Swinging at school during therapy!

So, great to be standing!

And so great to be out for walks again!

Love, Maria.

NOW WE'RE TALKING

It's me. I thought it is about time for me to give a little update! I have some exciting news to share.

I have been working hard with my speech therapist over the last couple of months. When she started working with me in December, she told us that her goal was to give me a way to communicate independently. It was a big goal for me, but very exciting! I have been hard at work. I don't know how many different communication buttons I have tried - big, small, sensitive to touch, less sensitive to touch, buttons attached to my foot, buttons attached to my wheel chair tray, buttons in my hand. I have tried different talkers, and many cool toys that I can activate all by myself with the help of a button. I have learned to turn on and off the radio, and I can't wait until I am in charge of the TV!

 

 

This week, I think we took a few steps closer to what I might need. I have met with two people who specializes in "assistive technology". They are helping kids like me find the right equipment to communicate. I think we finally might have found the "perfect" button! We are now exploring two possible communication devices, and how I best can communicate what I want and need. Everyone in the house is fascinated how much these talkers can help me!

My favorite thing right now is not talking. My favorite thing is playing! I have a couple of games on my IPad that I can play with my communication button. I love racing cars! I even beat sis last night! So much fun (especially beating sis)! Sarah is slowly getting used to my talker. She has been a little impatient with me as I am still trying to learn how to use it. I just get so excited, and just want to press the button over and over again!!! Mom can be impatient as probably you all know :- This time, we both know that it will take some time to fully figure out what I need, but we're on an exciting journey together!

I also want to let you all know that after three years of absolutely no standing, I am now standing for 30 minutes in my stander every day! Look how tall I am! You can see that I am starting to catch up with sis!

I also started school again. My teacher is coming to my home, since I can't be around kids this winter. I worked on colors with my teacher this week, and I also got to play a little bit in between. I still miss my friends in school, and I can't wait to go back to school in the spring again. At least  my friend Selina is soon back from Europe. I can't wait to show her all my new toys!

 

 

I have been doing pretty well lately. I had a cold last weekend, and felt pretty lousy, but believe it or not, I was able to fight it from home. It was a weird feeling being home, and being sick. Mom and I got to catch up on reading, watching movies, and relaxing together. We both enjoyed it very much. My potassium is still low, and makes for more blood draws in the last couple of months than I can even count to. I just hope we can find a solution, since it is not good for my heart. It also makes my mom worried.

On March 19th, I do have to go to Children's and get new ear tubes. I have a severely retracted ear drum, and it can only be fixed with ear tubes. First everyone thought I had cholesteatoma, which is a cyst in your ear. It would have required multiple surgeries, so we're happy that was ruled out! Everyone is still a bit nervous to have me go through a surgery, even if the surgery is only 5 minutes. It is my breathing, and the fact that my blood is not coagulating as well as it should that makes everyone nervous. I will go straight to the PICU right after my surgery, and stay there for the night.

And here is my beautiful sister right before going to her school ball with daddy! Isn't she pretty?

 

 

Til next time,

Jacob.

A CHILDREN'S HOSPITAL FRIDAY

As I turned on my phone this morning, I had a text from Jacob's neurologist wondering when we would deliver Jacob's labs this morning. His Potassium was low again, and we had to repeat some labs this morning.

At nine o'clock I turned into Children's Hospital for my first trip today. Since we're doing blood draws once or twice a week, I don't even have to say Jacob's name any longer. They know who I am, and who the labs are for. We have a routine down.

In the car to Children's Hospital, I can see that the first phone call from Children's is coming in. It is anesthesia. They want to discuss Jacob's upcoming ear tube surgery next month (more to follow on that in another blog post). They want to discuss Jacob's breathing issues as well as his blood coagulation issues. It is a good conversation, but the outcome is that anesthesia is not willing to put ear tubes in Jacob without hematology signing off on this procedure. Anesthesia wants more labs ordered, so we can further figure out what is going on with Jacob's blood before it is time for Jacob's ear tubes.

As I am leaving Children's Hospital, I am calling Hematology to schedule an appointment. The nurse knows Jacob from the Butterfly Program, so wants to chat and see how Jacob is doing these days.

I'll get home. I'll jump in the shower. I then jump in the car for my second trip to Children's Hospital. It is time to lead the monthly Family Advisory Council meeting this morning. As I am in the car, I leave a voicemail with Jacob's GI doctor. Jacob's stool output has changed as he is finally off his steroids (big YEAH for being off steroids!), and I want to check if we possibly have to make some medication changes to make sure Jacob stays in remission when it comes to his colitis. I also want to discuss his low potassium.

I pull into Children's. It is impossible to find a parking spot with the radio fundraiser going on. I end up parking in the basement of the garage.

I have time to chat with some of the other parents before it is time to get down to business! After the two hours long meeting, I have yet another meeting. After three hours of meeting, I decide to quickly stop by Alice 105.9 Radiothon fundraiser. I love to see Slacker and Steve in action. It brings back memories from the time when Jacob and I were on the radio last year!

In the car on the way home, Jacob's GI doctor calls me. We talk about Jacob's poop, we talk about Jacob's potassium. He wants to order several stool tests this very day to see if Jacob has an active infection in his stool, and if that could be the cause for him loosing his potassium. I text Jacob's neurologist to update her on what GI thinks, and wants to do. In the meantime, nurse Gemma is getting Jacob's stool samples ready to go.

I am getting in the car for a 3rd time to drive to Children's today. This time with a jar of poop. I get a smile of sympathy as I walk in once again. She is saying that she understands that there is a lot going on with our boy. I answers her that there is always something going on.

On the way home, a friend of mine is on the radio telling his daughter's story from Children's Hospital. My eyes tear up as I am listening to their story, knowing that his daughter had a really rough night last night after coming home from the Radiothon.

Jacob's GI doctor calls me again, and says potassium is normal again! Yeah! He still wants all the stool tests to make sure we're not missing anything.

Coming home, I know I have to start working. Gemma and I are also chatting about Jacob and his day. He has been a little off all day. His heart rate has been elevated, he has needed oxygen to breathe - but no fever. After his nap, he seems to be perking up!

We are having a little bit of normalcy. Sarah is coming home from school. I am catching up with Sarah's friend's mom. My neighbor stops by. Sarah and Joakim are going to the Father-Daughter Ball at her school, so I help Sarah to get ready for the evening. She looks beautiful. She is happy. I decide to go and take a yoga class, since Gemma is working late. Jacob looks happy!

As I put Jacob to bed, I can see that he is not doing great again. He is needing another round of suctioning and his heart rate is elevated. As I straighten up the house from the day, I can hear his pulse ox alarming constantly. Jacob's heart rate is going in the wrong direction, he is super flushed in his face, and is spiking a fever. I am giving him some Tylenol. It doesn't touch him. Heart rate is high, Jacob needs extra oxygen to breathe, and is looking miserable. Jacob is sick.

Joakim and I are huddling in Jacob's room, both not ready to leave our boy alone to fall asleep. I don't remember who brings up the question if it's time to pack the car to go to Children's for a 4th time today? We both agree it is time. We're out of routine. We haven't taken Jacob to the ED for months, so diapers are missing from the diaper bag, there are no extra catheters with the suction machine, I have no bag ready with clothes and tooth brush for myself. We finally are all set, Jacob is in the car, as well as our red wagon filled with stuff. The last thing I do is to put on a pulse ox on Jacob's toe realizing that Jacob has actually stabilized! His heart rate has come down quite a bit. And now is the big question - do we take him in or wait?

We decide to wait. Fever has come down, and heart rate is high but something we're ok to manage at home. We just know that when we take Jacob to the ER, he will always stay for a minimum of 48 hours until his blood cultures come back. We know he will be x-rayed, and loads of labs will be run for a second time today. We know that he will be started on the big gun IV antibiotics - just in case. There are times when that is the right way to go, but we do have a hunch that Jacob has gotten Sarah's cold, and that maybe he will do better resting at home.

Everything is packed and ready to go in case Jacob's get worse overnight or tomorrow morning. I can definitely say that today Friday was a Children's Hospital Friday for us!

Good night everyone, Maria.