For those diving into my blog without reading previous posts, my son Jayson underwent Posterior Vault Distraction Surgery on November 15, 2014 due to his multiple suture syndromic craniosynostosis. Read my previous post to know our reasoning behind selecting the distractor procedure over cranial vault distraction. Jayson's genetic condition is undiagnosed and he suffers from many complex medical conditions (read the blog description).
Here's a record of the times I want to forget, along with Jayson's warrior story, miraculous recovery and amazing achievements:
November 12, 2014
In attempt to fill anyone in who is behind and who doesn't like to read my blog (I rarely keep entries short), let me fill you in. Two weeks ago J had a CT scan done of his skull. Last week we learned Little J has multiple suture syndromic craniosynostosis. It is a complex, rare condition that means nearly all of his skull sutures (growth plates) are fused. Most should not fuse until age 20-30. There is also evidence in his CT scan and last MRI of long-term intracranialpressure. This combination is life threatening, and we are acting quickly. After several choices of doctors, hospitals, and procedures, our family has elected to have a Posterior Vault Distraction surgery done here at Primary Children's Hospital with our local neurosurgeon and craniofacial surgeon. We met with them today and they decided to move fast. Surgery is scheduled for this THURSDAY. It is a risky, 3 hour surgery that involves the skull and exposure to the brain, and 33-50% chance of blood transfusion due to blood loss. This is not a surgery they do every day, and this procedure has only been around for 2 years at our hospital. Jayson will have his skull cut open from ear to ear and distraction devices placed on each side of the cut skull. He will then be stitched up. Over the next 2-3 weeks, Mike and I will slowly adjust the distractors so they stretch Jayson's skull and scalp to make room for his brain. At a later date months down the road he will have another surgery to remove the distractors. Surgery will be very very hard on Little J, and recovery will be very very hard on all of us. There are some scary risks associated with this surgery, but there is also a lot of hope for increased development, reduced seizures, and overall better health. Thank you everyone for your thoughts and prayers. If you would like, join us in supporting Jayson and wearing purple on Thursday. This color represents epilepsy, Chiari malformation, and Craniosynostosis, the three conditions that affect his and our lives the most. Thanks for your support. We love you
November 12, 2014
Some smiles before pre-surgery blood work #primarychildrens #surgeryprep #littlej
November 12, 2014
I am overwhelmed by the love and support so many friends and loved ones are showing our family. 26 different families in my neighborhood came together to show us their love and support. We love our friends and neighbors so much and I honestly don't know what we would do without their friendship! They brought by a hospital care package tonight full of stuffed animals, books, cars. trains, soda, candy, magazines, slipper socks, color book and crayons. They also gave us an envelope with $50 for food while we are at the hospital. A couple of these families also deal with major medical problems and they truly understand the challenges of a major surgery and hospital stay. My favorite part of their gift was the card with all of their names on it. To know so many people love Jayson and my family is heartwarming. We are so blessed with good friends. Thank you from the bottom of my heart.
November 13. 2014
Surgery check in is at 12:15 pm on Thursday {today}. We have been super busy making necessary preparations. If you wear purple on Thursday or have a special message for Jayson tag me and use the hashtag #littlejsjourneyand/or #purpleforjayson . Thank you everyone for the thoughts, prayers, kind words and deeds. There are not words to describe my appreciation.
November 13, 2014
Im so scared. I don't want to go to sleep. Once I do, it will soon be morning and all of this gets very real. I hope and pray everything goes okay with surgery!!! I'm not done loving this sweet boy of mine yet. I need him.
November 13, 2014
The anesthesiologist just took him back. Last picture of my little man with his hair. Love you little J! You will see Mommy soon!!!
November 13, 2014
Just got an update and I'm so relieved and elated!! Everything is going well! Perfectly! Exactly as planned! No surprises! Minimal blood loss, stats stable, distractors are placed and now they are closing him up. The closure process is 45-60 minutes. He will then go to the PICU. I hope to see him in the next 2-3 hours. So grateful everything is going well. Thank you so much for all of your thoughts, kind words, encouragement and prayers!! #littlej #littlejsjourney#purpleforjayson #craniosynostosis #craniosurgery
#posteriorvaultdistraction
November 13, 2014
He's out of surgery in picu and all is well ! Going to see my baby now !!!!!!!!
November 13, 2014
My sweet babe is resting peacefully. We are so blessed. #littlej #littlejsjourney#craniosurgery #craniosynostosis #picu
November 13, 2014
His pain level spiked a little, so he looked for Mom, grabbed my hand, snuggled my arm and calmed right down. He knows without a doubt that his Mommy is always right here. Forever. #littlej #superhero #surgerytime#craniosurgery #craniosynostosis
November 13, 2014
This is my neighborhood. These are my neighbors, my friends. This is home and clearly paradise. The love our dear friends have shown our family is indescribable. We are so humbled, blessed and appreciative. As we left our home for the hospital today our street was lined with purple balloons and banners for Jayson. This afternoon our friends gathered to show their support again and took photos of their families in purple. My heart is bursting with love and gratitude. Just as their card said on their care package--- they truly are our neighborhood FAMILY. Love you all love, Mike, Tristin and Jayson
November 13, 2014
Life may not exactly be GREAT at this moment, but it's getting there!#onestepatatime #littlej #littlejsjourney #surgerytime #craniosynostosis
November 13, 2014
I have spent the past few days worrying and aching for my son as I thought about how difficult and painful the next few months would be for him. I was angry that he had more battles to fight and frustrated I couldn't take them from him. I questioned my ability to do what would be required of me and I feared I was not strong enough. I worried about how swollen he would be, his pain management, isolation, postponing pre-school, and many other concerns. All of the fears and anxieties about Jayson's future and the months that lie ahead disappeared this morning as I realized the seriousness of this surgery. All that mattered, ALL that mattered, was that he got through this surgery and that I got to see his sweet eyes look up at me again. That was it. He just needed to get through. And he did... amazingly well. I refuse to worry about what tomorrow will bring and the difficulties that will come, Because right now Jayson is breathing in and out beside me. With Little J's strength, my love, and Mike's courage, we can get through ANYTHING. All that matters is he's here.
November 13, 2014
Everything went perfectly today. Our pre-surgery experience was the best we've had to date. Our surgeons were good to update us during surgery. Everything went according to plan. No surprises, no challenges, no problems. Jayson didn't lose much blood, nor did he need a transfusion. He was able to have the breathing tube out in the operating room, instead of having to keep it in the PICU until tomorrow. Our nursing staff and experience in the PICU has been exceptional, and Jayson is so stable! He is in pain, but the team is doing well in keeping it manageable. Jayson keeps waking up periodically and wants to sit up. We found a CPAP mask that fits his head without adding pressure. He is resting well, and recognizes Mom and Dad are here. His swelling is really minimal at this point, although the doctors expect there to be more tomorrow. We have our own nurse who is 100% focused on Jayson and not shared. I actually think I may get some rest tonight. We feel so loved and blessed. I am not sure I am able to personally thank every one of you for your prayers, encouragement, and support in wearing purple, but I truly appreciate everything each of you have done to show our family your love and that you care. Thank you!! #littlej #littlejsjourney #purpleforjayson #craniosurgery#craniosynostosis
November 13, 2014
All tucked in ready for sleep #littlej #littlejsjourney #craniosurgery#craniosynostosis #picu
November 13, 2014
Doctor rounds at 11:15PM are fun #timeforbed #picu
November 14, 2014
Gotta love girl nurse drama that is talked about for an hour just in front of our room. Sorry ladies, but the fact that you were on your feet too much and your boss doesn't let you sit down as much as you'd like during your shift is NOT the life crisis you think it is. Is your child in ICU? Didn't think so. Stop with the gossiping, do your job, and help the kids who ARE actually in a life crisis with a pleasant smile on your face. Kthanxbye #grumpymom #notamorningperson#needmoresleep #ihategossip #picu
November 14, 2014
Not what this momma wanted to see at 2 this morning-- a cath kit . still no urine output and nearly 200 ml in his bladder. It had to happen but there's not much worse than a straight cath in the eyes of Jayson. I hope his brain will tell his body to pee so we don't have to do that again. #neurogenicbladder #littlej #littlejsjourney#poorlittlej #craniosurgery #craniosynostosis
November 14, 2014
Jayson did GREAT last night. No big problems. He did have to be cathed because he isn't peeing and it sucked really bad, but everything else went great. He STILL hasn't peed. We are getting more concerned and he may need to be cathed again. Cathing isn't fun for anyone, but the nurses tend to struggle to get Jayson's in so there must be some internal anatomy issues going on. It's torture for him and has to be held down by several adults, and then he hurts his head while he's fighting and thrashing about. His heart rate also goes over 200 and his blood pressure spikes, which is not good for his recovery. As you are continuing your prayers for Jayson, pray that his brain will work correctly and control all of his bodily functions. Thanks everyone! We should be leaving the PICU and going to the Neurotrauma unit in the next 3-4 hours!!!!! #littlej #littlejsjourney #picu #neurogenicbladder
November 14, 2014
Little man is swelling up today. Can't hardly open his eyes #littlej #littlejsjourney #craniosurgery#craniosynostosis
November 14, 2014
November 14, 2014
Leaving ICU and going to the floor! #littlej #littlejsjourney #craniosurgery#craniosynostosis #picu
November 14, 2014
Yay for pee!!!!!!!!!!!! #littlej #littlejsjourney#craniosurgery #craniosynostosis#specialneedsparenting
November 14, 2014
This just made my day!! I hope it makes yours First smile and excitement I've seen since surgery! Little J LOVES the movie Elf and is in heaven now that he's settled in his new room, people in scrubs aren't touching him and he can enjoy one of his favorite shows! #littlej #littlejsjourney #craniosurgery#craniosynostosis
November 14, 2014
Extra prayers please. Swelling is getting pretty bad (as expected) and J spiked a fever of 101.5 (which can happen) and his heart rate is high in the 170s resting (which comes with surgery, meds and a fever). Needless to say, my little pirate is miserable, which means his mommy is a mess. Things are getting hard. #littlej #littlejsjourney #craniosurgery #craniosynostosis
November 14, 2014
I would take this from you in an instant, my sweet boy. #littlej#littlejsjourney #craniosurgery #craniosynostosis #mommyandj
November 14, 2014
My poor babe. Fever is down. Swelling and pain are up. #littlej #littlejsjourney #craniosurgery#craniosynostosis
November 15, 2014
Another cath for J tonight. I basically learned how to cath and I may do it myself next time. This might become part of our new routines until Jayson heals. This hospital stay I seriously feel like staff. A machine beeps, I take care of it. Another machine isn't working and I have it fixed, up and running before the respiratory therapist can get to our room. I'm coaching the nurses through using their ultrasound equipment and in how to cath my own son. I had zero interest in nursing since the whole thought of it made me nauseas and here I am doing their jobs on a daily basis in my own home. Life is so crazy and unpredictable. And honestly, you learn and do whatever you have to in order to keep your child alive.
November 15, 2014
Rough morning lots of swelling, some vomiting, pain, apnea events, no urinating and lots of cathing. Waiting to hear about removal of the dressings. Plan for today: remove the drain on his head, treat nausea with zofran, train me in cathing, and keep his pain under control. We are hoping to get him to be awake more which will be a challenge given the meds and the fact his eyes are swollen shut. J is miserable. My heart is breaking for my sweet boy. #littlej #littlejsjourney#craniosurgery #craniosynostosis #day3
November 15, 2014
Saturday will be a very rough day. Jayson's medical head dressings (aka medical turban) will be coming off. This will be the first time I see my son's shaved head, huge incision, and metal distractors coming out of his head. I know for a fact I will not handle this well and I anticipate I will be physically ill. We are also weaning J off of morphine and sticking with just oxycodone and Tylenol. J will also need to be more awake and active tomorrow. Please pray for all of our strength. I will need Heavenly Fathers' support to do what is required of me the next couple of days. Thank you
November 15, 2014
Dressings are off. It's much worse than I imagined. I am not keeping it together any longer.
November 15, 2014
When I see this smile I know things are going to be okay. #littlej #littlejsjourney#craniosurgery #craniosynostosis #feelingbetter #distractors
November 15, 2014
Things are MUCH better this evening. Taking off of the dressings made a huge improvement in Js swelling. He is starting to open that right eye again!! Zofran stopped the vomiting, the last cath got 500 ml of urine and his abdomen is no longer distended, he is a little less medicated so he is a little more active, and he just peed on his own!! I'm also doing much better. Spent some time ill in the bathroom, had a really good cry, then found my strength again. Honestly, When J is better I am better As long as I don't look at the BACK of his head Thank you for your calls, texts, comments, messages and prayers. I haven't felt much like talking today but I feel your love! And a special thanks to Stephanie Bjorklund Roach, Patty Gritis Richardson, Leah Nelson Thompson, Tessa Taylor Williams, Tanya Taylor, Jodi Hansen, Amber Marie Snow, and Pat Lewis (Kim Lewis) for visiting us over the past couple of days. We love you guys! #littlej #littlejsjourney #craniosurgery#craniosynostosis #day3
November 15, 2014
Hey friends! I'm going to post some pictures of Jayson's distractors and incision in the comments of this post. If you get queasy with medical stuff, you will probably not want to look. If you are curious or interested in seeing how things are now and how they will change over the upcoming months, check them out.
Although some of you may be thinking "Oh, that's not too bad" for my sake, please avoid saying it. To this mom, Jayson's mom, these distractors, the swelling, and the incision are all awful. I prepared myself with pictures and other's stories for this surgery. No images I saw nor the descriptions I heard could prepare me for what I saw in my OWN child's head. It may not seem awful to you, but I nearly lost consciousness as they removed the dressings from my son's head.
My distress stemmed from many things-- my child was completely and totally miserable this morning. His swelling had gotten to a concerning level. We just spent 40 minutes holding him down while he screamed while cathing him when the plastic surgeon walked in to take off the dressings. I didn't have time to recover from the first trauma before we transitioned into the next.
I do very very poorly with blood and bodily fluids. I had decided last night that I could not watch as they removed the bloody dressings and pulled the head blood drain. I was going to let Mike help with it all, and I would either be on the other side of the room or just outside to avoid losing consciousness. Well, I had Jayson on my lap still comforting him from the cath when the cranio surgeon walked in. He just started removing them with Jayson on my lap. He didn't ask me if I was okay to help, nor did he prepare us for what we would see. I'm sure I could have interrupted him, but I was trying to be strong for Jayson. The room filled with a strong smell of blood and iodine as he removed the bandages. I saw lots of gauze sopped with my son's blood. I held my fussing, hurting son down as the red bandages were unwrapped inches from my face. As the bandages were peeled off the wound, new blood started to appear along the incision line. The surgeon wasn't prepared with any gauze, so Mike grabbed ours and I held it to J's head in two areas where he was bleeding. The blood from the drain removal squirted all over me and Jayson, and I was responsible for holding the gauze to his head with pressure and then taping it on over the drain site.
I did not know at this time that the swelling nearly immediately started improving in his face. I didn't see his face at all because he was in my lap. From the front he looked GREAT! But at that time, All I had in front of me was the largest incision I've ever seen, dried and wet blood all over his head, and these two large goose-egg type abscesses RIGHT in front of my eyes. Combine the smell of fresh and dried blood with my crying baby grabbing at his head and it was more than I could bear.
So please, avoid saying "It's not that bad". It may seem comforting, but it makes me feel defensive. No one could have any idea how bad it really was unless you've been there yourself. Jayse is doing MUCH better now, and I am doing great, so long as I don't look at the back of his head. Things will be okay; I am very very grateful; but things are hard and will continue to be difficult for the next couple of months.
As always, thank you all for your love and support
November 15, 2014
November 16, 2014
So many ups and downs. Rough night so far. Little J was showing some pretty neurotic behavior from 10:30-1:30am with fussing, giggling, thrashing and rubbing his head on everything. He seriously did not hold still for two seconds. The poor boy's eyes were closed he was so tired, but he couldn't sleep. Clearly we attributed this behavior to pain. Tylenol, Motrin and Oxycodone weren't touching it. So we had no choice but to give morphine which likely set us back a day for going home. Five minutes into his dose of morphine he was relaxed and asleep. I've never felt more relieved! He is still having some pain jerks, but it's mostly controlled now... At nearly 2:00am. But now we have new problems--his O2 sats are a little low, even on Cpap and O2, and his respiratory rate is hanging out at 6-8 breaths per minute. His norm is already low at 10-15, but 6 is a little too low for my comfort zone. So here I sit, watching my sweet boy sleep! I don't mind! I'm exhausted, but I'm just so relieved we got his horrible pain under control. It's going to get better, right?!?!?! #littlej #littlejsjourney #craniosurgery #craniosynostosis
November 16, 2014
Rough morning so far. J's been in pain and his nursing team forgot to give his pain meds during the early morning hours and the three hours I slept So he got upset, caused his distractors to bleed again, and his mommy got a little angry. It's hard to be calm and rational with no sleep when your child is in pain. We finally got him napping and hope he is happier when he wakes.#littlej #littkejsjourney #craniosurgery #craniosynostosis #day4 #no sleeps
November 16, 2014
Here is a little J video from yesterday! Jayse sure loves his Elf
This little man has a lot to smile about-- no cathing all day due to good urine output, the iv has been functional and has not needed to be replaced, pain has been pretty well managed, no vomiting, and a high likelihood of going home tomorrow if the night goes well. Mom (for the most part) is smiling too #littlej#littlejsjourney #craniosurgery #craniosynostosis #day4
November 16, 2014
Little J got to get out of his room today and go for a little ride . He loved checking out the third floor of the hospital! #littlej #littlejsjourney #craniosurgery#craniosynostosis #day4
November 16, 2014
A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles. #littlej #littlejsjourney#craniosurgery #craniosynostosis #day4 #superhero
November 16, 2014
Music therapists brought a guitar to our room to keep during our stay. Mike played music for Jayson often, and they both loved it. Day 4
— with Michael E. West.
November 17, 2014
This little snuggle bug is ready for bed!! Hoping the melatonin will help him drift into dreamland peacefully and that we have an uneventful night. Night Little J!#littlej #littlejsjourney #craniosurgery #craniosynostosis
November 17, 2014
Oh how I wish my child played by the rules. It took another 3 hours to get him to sleep, seemed to be having some pain and seizures, and now his O2 sats are unexplainably low on O2 and Cpap. Respiratory rate is low again too, and this time he isn't on morphine. Oh and he had a seizure earlier this evening in which he stopped breathing for a little over 30 seconds. Sigh... A peaceful night's sleep would be so nice but I don't think this mom will be sleeping for the next couple of months #newsuperpower #nosleep #craniosurgery
November 17, 2014
Well shizzzzz. J stopped breathing five times so far tonight. Stimulation would not arouse him. Given the eye movements we just witnessed we are thinking seizures. We started adjusting his distractor rods today so it is no surprise this could be affecting him in a big way. The only time he has ever stopped breathing during a seizure before was during his grand mal. These are more like complex partial. I'm shaking This is scary stuff friends. Please pray.
November 17, 2014
Today is NOT my favorite. I have not had enough sleep to fight the battles I have in store for me today. It is like almost instantly things changed to me vs them, and I hate it. Can't we all be on the same team and agree that episodes in which my child stops breathing and is unresponsive are bad, regardless of "how good he looks" or the fact "he's been on narcotics" or "all kids have a little apnea" or "we know Jayson has central apnea". Not to mention he is not at his baseline O2 requirement yet, having break through seizures, and having an average respiratory rate of 5-8 breaths per minute. I know I am but an ignorant special needs mom, but these things leave me concerned and asking a lot of questions. I wish I had at least one doctor in my pocket right now who was equally as concerned as I was.
November 17, 2014
Today can kiss it. Js pod is filled with sick patients today and our nurse and tech are shared with kids with respiratory patients. So far, staff changes cannot be made. I swear if my child gets sick, there will be hell to pay. That is all. #thismommaiscrazy #exhausted #frustrated #downwardspiral#craniosurgery
November 17, 2014
November 17, 2014
Sooooo... Update time. Last night Jayson had 6 apnea episodes that were potentially seizures in between the hours of 1 and 3 am. They were between 8 and 30 seconds long. Not necessarily life threatening, but super crazy scary. His oxygen dropped to 70, his respiratory rate was 5 during the episodes, and his chest was not moving at all. No air was leaving his nose or mouth, and he was as still as could be. No amount of stimulation would make him move at all. It was horrific. And as each second went by, I got more and more scared. Then he would just calmly start breathing again and his sats would go up. The last three came with his eyes opening and staring off. He didn't respond to me putting my hands over his eyes or touching his eye lids during the episodes, and he wasn't breathing then either. When he started breathing again, he calmly closed his eyes. The last three made us start thinking seizures.
A nurse saw a couple of these, but her communication to the doctor team was not as urgent as mine Yes, kids sometimes have apnea, and he looked really good in color and was peaceful, and he started breathing back on his own, and yes, he has central apnea BUT he had these episodes on CPAP with a flow of 8 and 2 L of O2. He has NOT had an apnea episode in which his monitor has gone off since his Chiari decompression surgery nearly 2 years ago. And even then, he had apnea episodes all the time his first year of life but he responded to me touching him and stimulating him. This time, nothing. The only time he hasn't responded to stimulation have been the three LONG periods of time that he stopped breathing at home and required CPR and intervention to begin breathing again.
It took hours to get a doctor to come look at him last night, and it was a resident who really didn't examine him. She said we may give him his seizure rescue med. I later got report that instead of giving him his Diastat, they were giving him his OLD regimen of rescue med which was 1 ml of keppra. That was our rescue plan when he was on just 3 mls of keppra months ago. We are now on 7.5 mls. Apparently our seizure action plan did not get updated when we increased his seizure meds and added Diastat. EVEN THOUGH it was in the computer very clear that he needed Diastat for a 5 minute seizure or clusters, they said they were going with the 1 ml of keppra in his seizure action plan. Yeah, like 1 ml did anything...
Today our doctor team came in, and there were a lot of new faces on the team because others were taking the week off. I was told, "So it seems like you guys had a rough night and that Jayson had some type of episodes which made YOU really concerned." I asked them why they weren't concerned as well? The doctor corrected herself and said, "Oh, we are, but there are some discrepancies in the reporting of these episodes. We don't know whose description is more accurate." Seriously?? The nurse observed them! She counted out loud the number of seconds he wasn't breathing. She verified there were no chest movements. We tried to wake him without success. We discussed the episodes after so she could let me know the medical details of the situation like she heard air flow in this upper lobe, but no actual breaths. She told me she would bring in a sheet I could use to document the episodes as they happened. She never brought the sheet in so at 4 am I started documenting them on the whiteboard so I could try and get some sleep. Apparently our descriptions varied quite a bit, even thought I wrote down what she and I debriefed afterwards. During one episode she counted out loud to be 12 seconds and she began counting once she got in the room after I paged her. Clearly it was longer than 12 seconds, but she reported to the docs that it was 8 seconds. The resident doctor with the team said that none of the episodes were reported to be longer than 8 seconds. Wow. The nurse and I talked about the length of the first one I witnessed in which his sats were in the 70's and I said it was at LEAST twice as long as the one she witnessed which she counted out to be 12 seconds. Grrrrrr. So yeah, apparently I made it all up or dramatized it or something. NO. I didn't have my stop watch out timing my son NOT breathing as his sats are in the 70's, his resp rate was 5 and the alarms were sounding out of their mind. I was trying to get him breathing again. But I'm pretty sure I know the difference between 8 seconds and 20+. I had time to see the monitor and hear the alarms, sit and stay on the couch and watch to see if they went up after a few seconds, go to his side, realized I didn't hear or see him breathing, go to the other side of the room to turn one set of lights on, then back to the other side to turn another light on to check his color, reposition him, move his arms and legs, pinch and grab at his limbs trying to stimulate him, put my hand in front of his mouth to feel for breaths, call his name in desperation, find and push the nurse call button which was hidden under the bed, go back to his side and lift up his gown to listen to his chest ALL before he started breathing again. I guarantee that was at least 20 seconds. But not according to her documentation.
The team called neurology, and the neurologist they talked to said they didn't think it was necessary to come see him. He said increased seizure activity was possible given he just had a surgery, and a head surgery at that. They said for me to watch him close tonight and video tape any episodes. Cuz when my child isn't breathing, I am totally going to want to grab my camera. So no sleep for me again tonight, because I have to try and catch one of these suckers on tape. Neuro also said they aren't convinced it's seizures; could be respiratory distress.
Respiratory is claiming it's neurological and that his airway and lungs look and sound good. If it's not neurological, then it's due to the meds. Well, he wasn't on any pain meds last night when this happened. He was past due, and then they didn't dare give him any once the first episode occurred. So no, not caused by meds. The respiratory therapist last night claimed his normal breaths were abnormally long, hence such few breaths per minute. When he wasn't having episodes he was only breathing 8-15 times per minute, hanging out under 10 most of the time. She said his breathing wasn't even and that his exhalation was 4 times longer than it should have been. So I learned more about bipap today which is an alternative to cpap. This would control the length of his inhalations and exhalations. I asked the team if we could do that tonight and see if it helped, and I was told no. We need my video data, and it would be too big of a hassle to change his settings on his cpap. So much for "The Child First and Always". They said it would be a challenge to get a pulmonologist to write the order. I asked if I could call my pulmonologist and see what she thought and she could write the order if necessary. They said they wouldn't be able to accept it because she isn't on shift at Primary's. Great.
I had other friends suggest that his pain could be causing the apnea so I asked to speak with the Pain Management Team to see if we could discuss pain management options that wouldn't suppress his breathing. They said no, Jayson should just be on Tylenol and IB Profin so I could speak with the Alternative Pain Management Team (?), but not the Pain Management Team. They were saved for patients with an order for narcotics and Jayson is on PRN for narcotics. The Alternative Pain Management team tried to come by, but we had a social worker in our room so we never got to see them.
We were supposed to have a genetics consult today and possibly push for the Whole Exome Sequence test even though it was denied by our insurance. Often times it can be approved with a new diagnosis or inpatient situation related to the genetic condition. Our doctor team said it was protocol to only call our geneticist (who happened to be making rounds at our hospital this afternoon) if Mike and I agreed we were willing to pay the $15,000 for the genetic test. If we verbally decide we want to cover the costs of the test since it may or may not be covered, the team can then call genetics and ask for them to come by for a consult. Mike and I talked about it and I finally told the doc that I wanted our geneticist contacted regardless. He told us the test was only $5000 and he had some research study options for us, and we really needed to talk to him after the latest diagnosis and surgery. Our doc contacted him and the geneticist said we did not need another consult or appointment. Just call him when we are ready to pay for the test. Being inpatient no longer changes the cost or situation. HUGE HUGE let down. He couldn't even be bothered to come by real quick to check in with us after this new diagnosis, which HE found because HE suspected suture fusions and ordered the CT. He had some syndromes in mind if it came back to show multiple suture cranio, but he wouldn't even come by to check in, and he said explicitly that there was no need for another appointment. We just could call him whenever we were ready to pay for the test ourselves. A social worker came and met with us and gave us some financial resources that could help if we choose to go forward with the testing.
We met with an organization called Rainbow Kids at the hospital today. Or family has just been welcomed into their family. It is a wonderful organization that consists of 2 doctors, 2 nurse practitioners, a social worker, a pastor, and a couple of nurses. They work with kids and families with life threatening conditions, and specifically help with palliative care and hospice. Although this is not an immediate concern for our little guy, we have been referred to this team multiple times and Mike and I finally agreed to meet with them and use them as a resource in jayson's care. They will be notified any time we are inpatient and they work together as a team to make sure things go smoothly and that days like today don't happen They also provide supports as life becomes more fragile and different choices need to be made. It seems like a great team to be a part of.
Our cranio surgeon came by. J's incisions are looking great, and the pressure points and abscesses are looking much better. He had never heard of a child having respiratory/seizure issues after this surgery. He didn't think it was directly related to the surgery at all, even though the only other time we saw episodes like this was when his brain stem was compressed.
The resident working tonight just checked in and made me feel one million times better. She and I formed a plan together that I feel comfortable with. We at this point are uncertain if his events are caused by respiratory distress, pain, or seizure activity (or possible a combo of all three). We decided to get PAIN out of the equation. We know that his respiratory issues are NOT related to the pain meds because last night he didn't have any in his system during the episodes. So keeping him on pain meds every 4 hours should NOT cause the respiratory issues we've been seeing. Also, he hasn't been getting melatonin so he has had horrific times getting to sleep, with three hours of thrashing and neurotic activity before bed the past two nights (ironically the past two nights he's had issues breathing later at night) Timely melatonin should get him calm and to sleep and avoid this neurotic phase. I also just got a call back from our pulmonologist who said everything sounds very neurological, even the longer exhalations can be a sign of neurological issues. She highly suggests bipap. She said it can't hurt and it definitely sounds like it would give him the breathing support he needs while he is healing. Sooo... right now I'm thinking melatonin, pain meds every 4 hours through the night, and if he struggles call the respiratory team and go crazy mama bear on everyone until they hook up bipap. Sound good?? I thought so. I sure hope we have a better night tonight OR we can get answers for what is happening. Thank GOODNESS for tonight's resident doc and Dr. P our Pulmonologist. Sooo grateful for people who care about my little boy and listen to me
Otherwise, J is doing GREAT. He's been a little active today, swelling is down, the pressure points and abscesses are looking better, incision looks great, he's happy and managing pain well throughout the day, and his sats all look good while napping (although the doc thought she saw a seizure in his sleep). His heart rate is nearly at his baseline, and he hasn't needed O2 during his naps today. My little man is a ROCKSTAR and I'm hoping things go well and we can go home soon where I can easily care for him without restrictions and protocols standing in my way,
Well, that was my day, how was yours??
November 17, 2014
Today was a really rough day trying to fight for the level of care my son needs and deserves. I am always open and honest about my experiences, frustrations and celebrations. So let me be honest in saying I am very exhausted, sleep deprived, stressed, afraid, anxious, frustrated and disappointed. These emotions clearly play a large part on my mood and on my blog and FB posts. I have really high expectations for the level of care I expect for my son while he is inpatient. He really deserves the best. I need to say that many days, he gets exactly that. We have had wonderful nurses, doctors, social workers, hospital relations coordinator, technicians, respiratory therapists, housekeepers, etc. AMAZING, in fact. And please know that even though I may honestly describe some not so great experiences in our medical journey on my blog and FB, I also recognize all of the good!! I've already met with the patient relations coordinator on Friday and told her how amazing his care had been at the beginning of his stay, and during our August stay. I fill out compliment cards every stay, and occasionally I send out emails to different departments complimenting particular nurses and staff. I couldn't get through this journey without them. So please know I have a lot of respect and appreciation for nurses and doctors, but some days like today, I can honestly say Jayson's care was less than adequate.
November 17, 2014
How crazy is this?? We started adjusting Js distractors yesterday. We adjust 1/2 mm in the morning and a 1/2 mm in the evening. Each time we adjust that small amount we see changes in the skin and skull. I may hate this whole process but it's pretty incredible what doctors and our bodies can do! Little J is amazing!! #littlej #littlejsjourney #craniosurgery #craniosynostosis #day5
November 17, 2014
Look at all the things Little J has been up to today! He even did some standing and weight bearing on his legs!!! #littlej #littlejsjourney #craniosurgery#craniosynostosis #day5
November 17, 2014
Nothing gets this little man down #littlej #littlejsjourney #craniosurgery#craniosynostosis
November 18, 2014
Jayse had a GREAT night! I think pain could have been the culprit for his rough nights. Pain can cause neuro issues, respiratory/breathing issues and even seizures. Right at the four hour mark when he was due for more pain meds his respiratory rate started tanking again and he got very jerky and restless in his sleep. Respiratory rate got as low as 2 last night But once pain meds got in his system it went back up to 10-15. Discharge is VERY possible today. Little J would be so much happier at home!! #littlej#littlejsjourney #craniosurgery #craniosynastosis
November 18, 2014
This sleeping babe will be taking his afternoon nap in his own bed!!!! Getting discharged this afternoon around 1! Homeward bound!!!! #littlej #littlejsjourney#craniosurgery #craniosynostosis #day6
November 18, 2014
Goals for today? Go home!! Love it! #littlej #littlejsjourney #craniosurgery#craniosynostosis #day6
November 18, 2014
November 18, 2014
November 18, 2014
One of the WORST parts of big surgeries and new conditions is all of the meds that come with it! It is seriously sad the amount of meds our son is on right now Most of the new ones can be stopped in a week or two. I am finding myself giving meds all day and night long. Tonight's schedule includes me getting up at 12:30, 1:00, 2:45, 4:30, 5:00, 6:45 and 7:30. Not much sleep happening here! We also have to clean Jayson's incision, wounds and distractors twice a day by a-tip and hydrogen peroxide (yeah that's fun) and then put an antibiotic cream on it, in addition to rotating his distractors morning and night. Can you say full time job?!?!?!
November 19, 2014
Little J had a GREAT night!! We didn't have a single alarm go off all night long! We feel so blessed!! He is doing great today with little pain and lots of smiles, thanks to Christmas movies and his new train table! Thank you times a million for all of your prayers!! #littlej#littlejsjourney #craniosurgeryrecovery #day7
November 20, 2014
His smile is my favorite. Surgery was a week ago today, and Little J now has 5 mm of extra space in his skull for his super smart, big brain #littlej#craniosurgeryrecovery #day8
November 20. 2014
December 9, 2014
Goodbye distractors! We won't miss you!! #littlej#craniosurgery #craniosynostosis #day26
This past surgery has been incredibly difficult, but there have been phenomenal results in such a short time. Jayson needed this surgery. His life depended on it. Our our lives will all be forever changed because of it. Hard things are usually worth it.
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