Jake did very well over the night waking up a couple of times but no real issues to report.
Normal routine as far as the doctors swinging by to check Jake out. The plastic surgeons did indicate that most of the pain generally comes from the incision and after a week that should be behind him. We did review a couple of items which resulted in a pain management team and Opthamalogy to swing by for follow-ups.
Jake did start to eat some more today taking in a strawberry/banana smoothie, a blueberry muffin but also had a slight bout of nausea. Jake is receiving Zofran to help with this and he went the rest of the day without incident.
The pain management team dropped by and we did want to let them know in the past we have had some challenges managing Jake's pain. They seemed to be concerned with the overall amount and levels of medication Jake has been taking and they are monitored a transitional wean process for him. We are fine with caution except that it could take various stages which would delay being discharged from the hospital. Their main concern is that the dosages might be too high if he is spending a lot of time during the day sleeping.
Jake has been in very pleasant spirits so it does appear the agitation was the result of the steroids he was taken versus surgery or pain. Jake did go to physical therapy today which had him playing with balls, catching balls, shooting hoops into a small basket, kicking a soccer ball and placing magnet shapes into their designated slots on a white board. At the end, Jake was allowed to get into a specialty bicycle and he cruised down the hallways of the hospital a bit. Jake is still a little wobbly on his feet so he does need some support but overall he is looking great and we were quite impressed with what he was able to do today.
Then it was bath time, Jake was able to take a real bath and we were able to eliminate some tape marks and other annoyances left from the past week in the hospital. Cleaned up and back in some pajamas, Jake was greeted by ophthalmology. They reviewed Jake's vision and tested his nerves and don't feel that there was anything to be concerned about. Jake had complained about his eyes from time to time but with so much swelling its hard to pinpoint what could be the cause. It was a relief to hear the doctor say that he doesn't have any major concerns.
Then it was off for a post-op cat scan. Jake was surprisingly calm throughout and by the time we reached the room again, he was a bit tuckered. Jake has been napping for the latter afternoon recovering from his busy day and it is nice to watch him rest.
The only issue we have had is Jake's right eye has been tearing a bunch and is a little red. Jake isn't complaining but we dont want an infectiom creeping up. After some parent insistence, the eye doctot after being consulted with has decided to come in to take a look.
Hopefully nothing but we shall see.
We want to thank everyone who reached out and participated in Hustle Kindness. The support is amazing and we know the collective spirit is helping Jake heal.
Friday, August 12, 2016
Thursday, August 11, 2016
Post-Op 1 Week (We even got a smile!)
Those that know us are familiar with our mantra with hospital stays that it is the countdown to smiles. That is always the sign that our little boy is back with us and strongly on his road to recovery. Well Jake fans, today was that day and we couldn't be happier.
Let us rewind a bit and then we will pick back up at the smile.
Throughout the night, Jake was still a little confused as to where he was and about everything going on. But at 5:30 am, he woke up alert and was sitting up. Interesting enough, Jake did bring up one confusing point, he pointed out that he could talk referencing that we had told him prior to the surgery that he would wake up and not being able to speak due to the breathing tube. To Jake, he just woke up after his surgery. It is fine with us if he has no memory of the last week and we are happy to start here as day 1.
Jake's first moments of calm soon turned and he started to get a little irritated. One thing that made it okay was at least he knew who he was and he was talking to us. Jake did start to get angry because he was hungry. We had to await doctors orders to start feeding which meant a small juice box but hey it was a start. Then, Jake started to develop a little more anger about eating and then ultimately commenting that he wanted to go home. He switched off between the two. I'm hungry, I want to go home so we had to focus on sitting with him and keeping him calm. Hard to blame him but Jake had decided he's over the hospital and wants to leave. We spent a lot of the morning trying to keep him calm and explaining why we can't leave just yet.
After meeting with the doctors, it was the consensus opinion that Jake was ready to depart the PICU and make his way to the regular floor. Medicines reduced, arterial lines taken out, some extra medicines added in to the regimen to wean him off the drips and the transfer protocol is met.
Jake had some visitors today and he saw Olivia and Luke for the first time as well as his cousin Elias. Jake wasn't in the best party mood but I think it made him happy to see them.
Around mid-day Jake was ready to be transferred but there wasn't a room available on the floor.
One helpful visit was from Cassie, the therapy dog who was allowed to sit on Jake's bed while he petted her. We had to continue the waiting game and at 5:30 we were on the move. And as you can imagine, no is ever sad to leave the PICU.
Jake had spent a lot of the day on our laps, sitting up, talking with us, getting angry, demanding things, sleeping, demanding things, getting angry and finally we had a positive story for him, a new room!
Jake has been talking to us all day and going through some pain, some agitation, some sleep. Although, the great moment happened as soon as we entered the new room. Jake started smiling, laughing even and for those that know Jake well, he even gave us one of his "you're out" umpire calls.
We met with the doctors and if Jake can continue to progress we hope to be out of the hospital this weekend but what is left is pain management and appetite. We feel confident we are on the upswing and hopefully the cranky jake has just been a function of some steroids still left in his fat cells and we can keep him smiling and getting better so we all can do what Jake wants, GO HOME!
One more side note in closing. For those who want to take part again, tomorrow is Hustle Kindness Friday. So wear your shirts take a photo and post with the following hashtags #hustlekindness, #jakereissjourney, #peachsneetfeet. And tag Samantha and Lance in your posts.
Wednesday, August 10, 2016
Post-Op Day 6
Day 6 is an interesting one as it did represent the early range (6-15 days) we were given for Jake's stay in the hospital of this surgery. History has set a precedent and we know that Jake tends to be on the middle to later side of any ranges were are given for hospital stays.
Last night provided the first of some interesting developments with Jake. Around 3am he refused to go to the bathroom. It appeared to be a aversion to going to the bathroom in a diaper. For a kid, the hospital claims may have some delirium, this appears to be a coherent decision.
Come morning it was important to us to discuss with the doctors the plan for Jake. He was communicative with us and clearly with the bathroom situation was exhibiting signs that he knew what he wanted and wasn't afraid to signal us.
The Plastic Surgery team came by during rounds and did discuss that they thought Jake could be ready for extubation based on our account but due to the OR availability and schedules it was most likely to remain Thursday. We had our concerns because Jake was clearly uncomfortable constantly pointing to the tube, was communicative and had received 2 full flights of the steroids to reduce the swelling in his throat. Jake started to become more irritable and tougher to control in his bed. Thrashing around and unhappy, Jake even used his feet as leverage against his bed rail to push. What was more concerning is that even with the intubation, we could hear Jake making noises as he tried to speak to us. During this chapter, Jake was pointing to his diaper and was nodding when we asked if he had to pee. We tried to encourage him to just go in the diaper but he shook his head vigorously no. He kept kicking the diaper in disgust and reaching his hand toward it. Finally, we asked if he wanted to go in the plastic container and he shook his head yes. Sure enough, as soon as we got it in place, Jake relieved himself. It was unbelievable that a kid who had been drugged more than imaginable who was claimed to have ICU delirium was aware enough to refuse to go in a diaper and clamored for the plastic container. We shook our head in disbelief at his refusal to go in the diaper and he even went a step further and made us take the diaper off. Jake was angry and it made us realize that why should we keep him unhappy in all forms for an entire day. How many medicines and other items would he have to be given to relax him enough to wait another 24 hours for extubation.
We had seen enough and requested that the nurse summon the attending PICU physician so we could discuss the plan of action. We clearly explained that Jake was self aware enough and we were concerned about giving him a ton of drugs to calm him when a major source of agony for him was the breathing tube. We advocated that Jake should not have to wait for when convenient scheduling of the OR if the other signs indicated he could get the breathing tube removed today. Must have been a convincing argument because PICU and Plastics conferred and decided if Jake passed some of their preliminary examinations, we could extubate this afternoon. Huge Win for Team Jake.
As the time drew near, we grew very nervous for the procedure based on our last go round. Jake of course had other plans. He was busy taking a nap. Half of the staff was waiting around but Jake didn't want his slumber interrupted. He woke up about an hour after the scheduled extubation and we were ready to begin. This time around, the process was very smooth which was a huge relief for two very nervous parents. Jake was free!
Once we gave Jake a breathing treatment, he emerged agitated and a little grumpy. Jake decided that it meant he was ready to go home. Jake can speak in a very low hoarse whisper and he simply kept saying "carry me, let's go home." We had to convince him to relax and take things one step at a time. It took some coaxing but Jake was pretty unhappy staying in bed. After some cuddling and discussion, Jake had some Adovan and it really helped calm him down and take a nap. The rest of the afternoon has been pretty uneventful as Jake has been resting free of his breathing tube. We are so happy for him and we look forward to his continued recovery and what we hope to be a departure from the PICU to a regular room tomorrow.
Last night provided the first of some interesting developments with Jake. Around 3am he refused to go to the bathroom. It appeared to be a aversion to going to the bathroom in a diaper. For a kid, the hospital claims may have some delirium, this appears to be a coherent decision.
Come morning it was important to us to discuss with the doctors the plan for Jake. He was communicative with us and clearly with the bathroom situation was exhibiting signs that he knew what he wanted and wasn't afraid to signal us.
The Plastic Surgery team came by during rounds and did discuss that they thought Jake could be ready for extubation based on our account but due to the OR availability and schedules it was most likely to remain Thursday. We had our concerns because Jake was clearly uncomfortable constantly pointing to the tube, was communicative and had received 2 full flights of the steroids to reduce the swelling in his throat. Jake started to become more irritable and tougher to control in his bed. Thrashing around and unhappy, Jake even used his feet as leverage against his bed rail to push. What was more concerning is that even with the intubation, we could hear Jake making noises as he tried to speak to us. During this chapter, Jake was pointing to his diaper and was nodding when we asked if he had to pee. We tried to encourage him to just go in the diaper but he shook his head vigorously no. He kept kicking the diaper in disgust and reaching his hand toward it. Finally, we asked if he wanted to go in the plastic container and he shook his head yes. Sure enough, as soon as we got it in place, Jake relieved himself. It was unbelievable that a kid who had been drugged more than imaginable who was claimed to have ICU delirium was aware enough to refuse to go in a diaper and clamored for the plastic container. We shook our head in disbelief at his refusal to go in the diaper and he even went a step further and made us take the diaper off. Jake was angry and it made us realize that why should we keep him unhappy in all forms for an entire day. How many medicines and other items would he have to be given to relax him enough to wait another 24 hours for extubation.
We had seen enough and requested that the nurse summon the attending PICU physician so we could discuss the plan of action. We clearly explained that Jake was self aware enough and we were concerned about giving him a ton of drugs to calm him when a major source of agony for him was the breathing tube. We advocated that Jake should not have to wait for when convenient scheduling of the OR if the other signs indicated he could get the breathing tube removed today. Must have been a convincing argument because PICU and Plastics conferred and decided if Jake passed some of their preliminary examinations, we could extubate this afternoon. Huge Win for Team Jake.
As the time drew near, we grew very nervous for the procedure based on our last go round. Jake of course had other plans. He was busy taking a nap. Half of the staff was waiting around but Jake didn't want his slumber interrupted. He woke up about an hour after the scheduled extubation and we were ready to begin. This time around, the process was very smooth which was a huge relief for two very nervous parents. Jake was free!
Once we gave Jake a breathing treatment, he emerged agitated and a little grumpy. Jake decided that it meant he was ready to go home. Jake can speak in a very low hoarse whisper and he simply kept saying "carry me, let's go home." We had to convince him to relax and take things one step at a time. It took some coaxing but Jake was pretty unhappy staying in bed. After some cuddling and discussion, Jake had some Adovan and it really helped calm him down and take a nap. The rest of the afternoon has been pretty uneventful as Jake has been resting free of his breathing tube. We are so happy for him and we look forward to his continued recovery and what we hope to be a departure from the PICU to a regular room tomorrow.
Tuesday, August 9, 2016
Post-Op Day 5
Well, last night the doctors determined that Jake was suffering a bit from ICU delirium and he may need a different drug to counteract it. He had stopped responding to increased dosages of his regular meds and we needed to find a away to have him relax. The new strategy and medicine did seem to work overnight with just one reaction around 3am. The rest of the morning Jake was knocked out mostly by the new regimen.
During rounds, we discussed the plan of action going forward and it appears in order to be safe that the doctors will wait till Thursday to try extubating again. In their words, they don't want to fail again so better to exercise caution in getting Jake ready. Jake finished his round of steroids and started a second one to make sure that the swelling in his throat can be healed so we can remove the breathing tube. The extubation will take place in the OR this time and hopefully will go as planned versus yesterday's experience.
Then, as we settled in, Jake decided to test us a bit again. We looked over and he had one eye partially open and seemed very lifeless. It seemed he was testing the other extreme of the spectrum. The resident was called in to check and Jake wasn't responding to some touch tests and when the doctor asked about a catscan we grew very nervous. Jake did respond ultimately and the doctor indicated he was too far sedated then he would like so he reduced some of his levels. After a little while Jake opened his eyes and responded to some questions and it was a huge relief to know our Jake was back.
For the rest of the day, Jake was resting with periodic waking up where he would open his eyes and answer a couple of questions. He kept pointing to the breathing tube and we tried to comfort him. We also wanted to remind him that he was in the hospital and had a surgery just so he could remember where he was. The psychiatrist recommended we do that so that we help his brain process and remember when he lifts out of such deep sedated states.
Jake is currently resting with his foot crossed over a knee in a very cute and relaxed position. The big issue is they have to re-insert his feeding tube which they had removed for his extubation. I hope the medicines he just received will help him get through this with minimal disruption. These will all reset the countdown till extubation as Jake will need to meet his goals of eating, breathing etc. to ensure he is ready for Thursday.
During rounds, we discussed the plan of action going forward and it appears in order to be safe that the doctors will wait till Thursday to try extubating again. In their words, they don't want to fail again so better to exercise caution in getting Jake ready. Jake finished his round of steroids and started a second one to make sure that the swelling in his throat can be healed so we can remove the breathing tube. The extubation will take place in the OR this time and hopefully will go as planned versus yesterday's experience.
Then, as we settled in, Jake decided to test us a bit again. We looked over and he had one eye partially open and seemed very lifeless. It seemed he was testing the other extreme of the spectrum. The resident was called in to check and Jake wasn't responding to some touch tests and when the doctor asked about a catscan we grew very nervous. Jake did respond ultimately and the doctor indicated he was too far sedated then he would like so he reduced some of his levels. After a little while Jake opened his eyes and responded to some questions and it was a huge relief to know our Jake was back.
For the rest of the day, Jake was resting with periodic waking up where he would open his eyes and answer a couple of questions. He kept pointing to the breathing tube and we tried to comfort him. We also wanted to remind him that he was in the hospital and had a surgery just so he could remember where he was. The psychiatrist recommended we do that so that we help his brain process and remember when he lifts out of such deep sedated states.
Jake is currently resting with his foot crossed over a knee in a very cute and relaxed position. The big issue is they have to re-insert his feeding tube which they had removed for his extubation. I hope the medicines he just received will help him get through this with minimal disruption. These will all reset the countdown till extubation as Jake will need to meet his goals of eating, breathing etc. to ensure he is ready for Thursday.
Monday, August 8, 2016
Post-Op Day 4
Monday marked the beginning of a new week at CHLA and a day that we hoped would bring a new phase of Jake's recovery. You can immediately tell the difference of the hospital during the week versus the weekend. Rounds start early and fuller teams fill the hallways. Big day for Jake as there was the hope he would have his eye sutures removed and then his breathing tube.
Jake had started to open his eyes to look at us and started to nod his head to answer yes/no questions. It felt amazing to see those baby browns. The only negative for Jake was that his pain medicine had to be dialed back to prepare him to breathe on his own once the tube was removed.
The Plastics team made there way to Jake's room before 7am and immediately jumped into action taking out Jake's eye sutures. That marked the first step of this new phase. Jake had been breathing on his own which was another step to freedom but the removal of the sutures caused some agitation so Jake had to be put back on breathing support to help while he was given some drugs.
Respiratory Therapy gave Jake a couple of breathing tests but needed to return in about an hour to see if Jake could pass. Second time around Jake was all good breathing on his own making in way towards extubation. The PICU doctors performed their rounds and they too decided Jake had met all of the criteria for extubation.
Jake had started to open his eyes to look at us and started to nod his head to answer yes/no questions. It felt amazing to see those baby browns. The only negative for Jake was that his pain medicine had to be dialed back to prepare him to breathe on his own once the tube was removed.
Around 12:30, it was go time. They pulled out Jake's tube but he instantly appeared to become agitated and thrashing about while it looked like he was struggling to breathe. I will spare most of the details of what happened next because it was very difficult as parents to witness and experience but in the end Jake needed to be intubated once again as he simply couldn't breathe on his own. It was very traumatic to watch while worry and then panic took over. In the end, the doctors assured us it was not what they had hoped but it is one of the outcomes that can happen.
Poor Jake, he didn't have room to breathe in his nose post surgery and then his throat was swollen and closed up when they removed the tube. The only positive, Jake was in the prefect place to react to the adversity and get him back on track.
It was a very tough day and Jake was tough to corral once he was intubated again. He didn't seem to respond to the medicine and kept trying to fight to stay awake versus relaxing and resting. After many hours, Jake is finally resting but he keeps waking himself up opening an eye and looking for us. I think he was affected by today as well and he needs the additional comfort for him to rest peacefully.
Today's turn of events will set the schedule back as they are now giving Jake stronger pain meds and steroids to reduce the swelling in his throat. They want the second time to be successful with extubation so it may have to wait till Thursday. Only time will tell and we all need to recover from an emotional and draining day.
Keep Jake in your thoughts.
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