The love of family runs deep and Children’s hospital recognized the power of “home” and let us go home sooner than anticipated with strict instructions to follow and a promise that we would call and go in if anything looked amiss. They felt I had proven that I was a intuitive and medically well versed momma (which honored me deeply) so they trusted for us to go home for Malakai’s supercharged goal to be home for Isaiah’s 12th birthday. He did it and we are praising God!
Malakai has been asking all the medical staff as the come in to tell him exactly what he needs to do to be able to go home. 💕 They said they will make him a checklist but I don’t know if it will have time sensitive items or larger checks. I know having the PICC line is a procedure that they need the OR for so I don’t know if that would be the biggest hang up.
How I see it: He is not 100% but I feel he will only get there at home at this point. He has been desperate to get home since FaceTiming Adam and his siblings. I feel comfortable taking on his care at home because of the wins below.
Wins 🎉 from today:
❤️Slept pretty well, whimpering was less than in the past nights and not upset enough that he called out for me and fell asleep again in his own.
❤️ Woke cheery and with managed pain.
❤️Asked to order food almost immediately and ate a great breakfast and drank by mouth more than ever since his surgery.
❤️ This wonderful eating trend kept up all day! He ate almost full meals all day and drank so much that they let him free from his PICC fluids line.
❤️ We finally had a successful malone flush last night and with finally eating/drinking and keeping it down his tummy has felt so much better today!
❤️ Malakai got a supported shower to wash his body today for the first time and it made him so happy.
❤️ Malakai was able to trade out a bedpan and pull-up for his undies and pants as he was cleared to use the commode by his bed when nature called.
❤️Along those lines another win is that Malakai was able to wear his own clothes for the first time today!
❤️ Malakai has had a lot more energy ( does tire more easily but has a ton of vigor while awake.)
❤️ Was allowed to have me lead his PT today and guide him out of his Bed and around the room as he is drinking enough now that his PICC is just being used for medicines now.
❤️ They said that his rash is urticaria from what they believe to be the augmentin he was on. He also has white dome shaped papules along his incision line and along his scalp. They said it is miliaria due to the occlusion we trama to his skull and scalp.
They have him on Zyrtec now to help with the itchiness.
❤️He is finally playing so nicely today. He said, “Mommy I’m having more fun than I’ve had for a long time!”
❤️Today’s PT is building a bionical robot while sitting up without back support. This is teaching his brain to develop hand/eye coordination and to build more core strength and help build brain/body connections to gain spacial awareness and balance.
❤️Tim came and they were able to finish up the bionicle together and have some special daddy and som time. It has been an amazing day. I am so thankful!
🥰 Thank you all for your kind words of love and encouragement, prayers, meals to our house and to me at the hospital, moral boosting gifts to Malakai and I, etc. That all means so much and is truly carrying us.
Over all a good day as Kai has been in good spirits and be even got to play on my bed for PT for a little. It took a lot of effort to sit unassisted but he really gave it a go. I look forward to seeing him get stronger and being able to sit up strong and full of life.
The PT challenged Malakai to get up and walk in hopes that it will help with moving the swelling out of his body from head to feet and to help his GI start moving better. He went on a really small walk into the hallway and back and it was exhausting for him but he did it and was so happy to be able to see snow ❄️. I was so happy that he was able to tolerate the movement and light. Making amazing progress with his photophobia and the CSF leak seems to be slowing as the intercranial pressure is subsiding slowly. I am so thankful.
There are a lot of wins today and I believe it helps cushion the times of frustration and harder times.
Please send continued prayers over all but especially for the follow hardships yesterday:
🙏🏽Kai isn’t keeping food down much and limited drink.
🙏🏽 After last night’s hard flush and trying to walk some tonight he was in a lot of pain and it Turned out that he has a rectal prolapse.
🙏🏽 Malakai also has a rash that they are trying to decide what is causing it. Staff infection? Allergic? Stress histamine reaction? I pray they figure it out soon and he can have some relief. (Have a call into the infectious disease doctor as well as surgery and dermatologists.)
🙏🏽 Please pray for our hearts as the 13th is Isaiah’s 12th birthday, Myself and Kai are really disheartened as it looks like we won’t be home for Isaiah’s birthday after all. (We know Kai isn’t ready and are thankful for the medical care he is receiving and for the progress but this was Kai’s goal all along and it looks like that isn’t going to happen.)
It was so sweet, we were sent cheer up gifts from Sheila & Larry Dick, Teri Lehto and from the Soderberg family. It was just what we needed. It was salve for our souls. We also got a stack of cheer cards for Malakai and we look forward to reading them tomorrow. Thank you to all who sent one up to us in room 611. It means the world that you are cheering him on and I am so thankful that children’s has that program!
Kai is a freaking rockstar. He puts up with so much and his perseverance through really hard things is only explained by sheer grace from God. Sometimes I have been catching him self-soothing as he used to when he was a babe in China; the crossed fingers. I know he is dealing with so much “hard” and is doing it with such grace. I love you so much Malakai. Our saying is, “This is hard but Noricks do hard things because we have God and it isn’t forever.”
Malakai rocked continuing to try and eat and drink through the day, even though it often didn’t stay down, a PICC dressing change and his nightly Malone flush that requires him to sit for an hour. Not an easy task for his stamina and the flushes have been very painful. Thankfully they started him on softeners and we realized his trunk works really well as a squatty-potty. 😉 I pulled up and chair and helped support him and watched The Incredibles with my incredible kiddo.
Thank you again Village. We love you 💕 Please continue praying. We still have a journey ahead of us and at the risk of sounding cheesy, you are the wind beneath our wings.
It has been an incredible day. So many prayers answered. God is working!
CSF? – yes, there is a suspected brain dura leak but they feel it is from when cranial pressure has a drastic change such as coughing, vomiting, crying, moving elevation quickly, etc. that it is getting squirted through the stitches on the three spots where the brain dura tore during surgery. They don’t believe it is a new leak that needs surgical patching, they think it will heal on its own!!! Yay!
As of right now the Headache from CSF and intercranial pressure is being controlled perfectly by getting the right pain meds on the right schedule. His photophobia is also not bothering him a ton!
I. Am. In. Shock! 😳🤩
My sister, Christin, texted that my nephew, Adam, Really wanted to FaceTime Malakai and when Malakai heard that his cousin wanted to talk with him, he said that his goal was to work really hard today to do the hard thing of opening his eyes and trying to figure out how to make it hurt less why his eyes are open. He has been so scared to try and as the light hurts even through his eyelids. But when he heard that Adam and his siblings wanted to FaceTime later, He decided he felt that he was feeling well enough today to try!
Malakai worked really hard to find which angle hurt the least to turn his head away from the sunlight coming to the window even through the shade. When he found an angle to turn his head and was able to open his eyes more than he ever has since surgery he said, it’s so weird mom, I can see out of the corners of my eyes?! Surgery worked! He can see and he has peripheral vision which he hasn’t had!
This is HUGE!
Swallow/Speech therapy came and got Malakai to try and eat some pancake. She had the genius idea of saturating the pancake with butter and syrup so it was almost soft enough to chew with his tongue. 1 for easy of teaching him to chew, and 2 because it added to the caloric punch per bite. He only had the energy to eat 5/6 bites but I will take it!!
PT/OT came and talked to him about working on sitting up and then trying to walk to the recliner so he could build to a commode vs having to use a bedpan. He was very motivated by this and worked to sitting for a little time and then….
They helped him walk to the recliner!!! He is still a but disoriented and needs vision guidance as he learns his special awareness of his new vision but did it!!!
It took all his energy and soon was fast asleep but I am exploding inside with joy and newfound hope!
One of his huge motivators is he REALLY wants to be with Isaiah on his birthday on the 13th. We shall see but he is doing all the hard things to try and make that possible.
I got Malakai some slipper socks to wear while learning to walk around post surgery. They are really soft and have traction that helped with stabilizing Malakai today while walking. I decided to splurge and get some for myself too. Best choice! Lol they are soo cute and comfy.
EKG results came in later in the day with the result of bradycardia and slow sinus arrhythmia. I spoke with the neurosurgeon and he said that sometimes arrhythmia can happen when there is trama to eyes so this would make sense. Either that or Malakai also could just have a special heart to match the rest of his specialties. There is still so much unknown about Optiz G BBB. So far his bloodwork is showing that he is tolerating his slow dancing heart for now. We will just keep an eye on it. And of course, pray.
The flush sample from last night came back with the results of no blood or CDIF so we are thankful. They don’t know what that was but we still reached out to GI as he had a very unproductive and painful flush tonight. They believe he could have a lower gi blockage. Enema in the morning if it doesn’t come on it’s own tonight. Praying for 💩.
They found hives on Malakai’s neck, back and bottom. We are thinking it is probably a stress rash. We will be keeping an eye on it as he has also not tolerated the amoxicillin great stomach wise. So that question isn’t out of the picture too. We shall see.
Tomorrow’s goal is to get Malakai eating and keeping down good better. The CSF and intercranial pressure in his head is making him feel motion sickened every time me moves around too much or eats.
Malakai kept down today: 6 bites of blueberry pancake that we saturated with butter and syrup to soften and to give a caloric boost. 1 snack pack chocolate pudding cup, and 2 Capri sun pouches. chicken noodle soup and half a banana were enjoyed but didn’t stay down. Praying for a calm stomach and more caloric intake tomorrow.
Today was such a blessed day, even with the hard times. I pray tomorrow brings even more healing and miraculous moments so we can get those boxes checked and be home with our family.
Although we are moving in the right direction, Malakai’s recovery has been a bit of a rodeo. Yesterday was very much like that. I am so thankful that the staff up here on the 6th floor are so open and eager really to have me help in Malakai’s care. Although there is a lot that is still medical personnel territory, they have realized that Malakai’s moral (and mine for that matter) is boosted when it is him mommy caring for him so they let me do things that I would be doing at home as Mom. It allows me to be hands-on caring for my son in many ways and it really does make a huge difference for my anxiety as I feel I can do something to help my baby boy get better.
Today’s word was Advocate. When I was a 20s something mom, I used to be nervous and felt of it as being pushy. I didn’t want to undermine or make the medial staff mad at us; causing them to not give adequate care. I suppose working in the restaurant industry with some colleagues who took matter into their own hands when someone treated them badly set a fear in my mind. (It was only hearsay and no it wasn’t your food. 😘). Now, slightly more lived me, 😉, has learned in the over 16 years of being a mom, it is ok to ask the questions and to ask for a second opinion. Communication is key, especially when you have a beautifully complex kiddo who has lots of cooks in the kitchen. There are multiple things said and not all agree with one another. We found that multiple times here with having 5 different surgery specialists groups involved, the PICU team and all their nurses and staff and now the surgical floor medical team and the team of therapists who are working with Malakai.
Depending on their role in their specialties they all have differing mentalities of level of importance of care and are focused on the boxes that need to be checked to be completed; cut and fix(Surgeons), rule out worse case scenarios and try to keep from more surgery(specialists), make stable enough to move on to next level of healing(PICU), manage pain and heal(surgical recovery floor), and to strengthen and teach how to handle the new circumstances you have been gifted(Therapists), and the moral boosters(child-life team). All are honed in on their special gifts to do their jobs to the best and all care for Malakai in their own way. I had to learn that each care in a different way and it causes different opinions so it is incredibly important to have a middle beacon to help make sure all are on the same page. The staff does great over all to communicate with their daily rounds and meetings but as I have found, when there are so many moving parts, things get lost in translation sometimes and so I was able to help communicate to fill the gap. (as our amazing PICU nurse, Amina, said, there are lots of specialists helping, I am the specialist of Malakai. I am his Mommy and I know him best.)
This morning (2/9), Malakai and I were woke in quite a start. We had a medical personnel person come in at like 5:45 this morning. She opened the door and loudly exclaimed; “Good Morning Malakai! Are you ready to go home today?! “ I nearly fell out of my couch/bed! I told her that there must be a mistake as he barely was stable enough to come up feom ICU till yesterday afternoon! That and he has sooo many boxes yet to check. I was left feeling I was going to have an anxiety attack and I had to sit down. I just breathed and said, “Jesus I trust in you.” And the whole room felt warmer and smelt of a chapel filled with burning candles. It didn’t last long but it brought me so much comfort.
My friend Kristin reached out to me and I was able to talk with her and calm down a bit more. She helped me have courage and know that I had to be Kai’s advocate. (Kristin, you are always my warrior and help me feel I can do anything for my kids. I am so thankful.)
Soon after that, I knew I had to say something, I had to advocate. I knew he wasn’t ready. Kai’s night nurse and day nurse came in to switch off and I told them and asked them if that was true and they looked at me perplexed saying, “There is NO way that Malakai is close to ready today. He is not going home. He is nowhere near ready and had quite a few boxes still to check.
All the therapists we’re coming today to set their baselines. They all agree that there’s quite a bit of mileage to cover but that overall Malakai is strong and they believe he is going to respond well to therapies.
Poor Kai had very bad headaches and stomach pain and nausea. His nose is dripping clear liquid. We talked to his Neurosurgeon. He said that Malakai did have three spots of perforated dura (brain lining) during surgery but he felt he sutured them well but it is a possibility. They are going to be doing some tests to confirm CSF (Leaking if Brain fluid).
Swallow and speech therapy came in and approved liquids as although he has having post drinking coughs, they feel he is clearing well and his voice sounds good. They said the strength of his voice will come with the gaining strength of his body.
PT came in and did an assessment. No paralysis and good responses all around. Yay! Malakai is strong, he is just in immense pain and his equilibrium is way off so he was very disoriented when they tried to help him sit up in bed. He managed to sit supported for a few seconds before they laid him back onto his pillow. She said he wasn’t ready for more, Yet, but she felt overall he will progress beautifully if we let him lead and encourage him to hit his potential each time; even if it is only for a small amount of time. (It was during his PT session his nose dripping became more and so that is when we reached out to Dr. W; his neurosurgeon. )
Malakai’s heartbeat became irregular again and so they performed another EKG on Malakai. We are waiting on results.
The rest of the day was a dance trying to get Malakai comfortable and try to coax him to eat. Through the entire day, We got in 1 snack cup of jello (I am so proud of him, it wasn’t easy and he had to really push through but he did it.) 2 sips of chicken broth, 6 bites of mashed potatoes, and 8 sips of vanilla protein Boost. I love my little caterpillar. 🐛
They dropped his dilaudid and moving to morphin instead. Since Tylenol, ibeuprofen, oxycodone and dilaudid isn’t enough to subside his pain.
Night came and so did the time for Malakai’s Malone flush. The past two night there have been nursing students with our nurse of that night and all were so eager to learn how to administer a Malone flush and so the nurse asked me to show them how to do it. I agreed with the disclaimer that I am a parent and they could be told different when really doing this in the hospital as each patient will have a different solution and the Drs may have different ways they want you to do it. It was such a moral booster for me as I finally felt I had something to give back to this amazing team who has been so on it for Malakai.
I was surprised with such a special moral booster when a friend, Kassia, had Chick-fil-A delivered to the hospital for me for lunch. It made my day! Thank you so much!
I also forgot to thank my dear friend, Elise, for dropping off a Starbucks coffee to me yesterday morning. She works here and came to us before starting her AM rounds. It was a HUGE moral booster.
You all have been Jesus’s love to us and I am so thankful. Your love and prayers have carried us. Thank you. Thank you. Thank you.
During the flush Malakai started screaming out in pain and his output started coming out an iodine/blood color with coagulated particles throughout. They had us stop the flush and sent in a sample as they feared it was blood. We are waiting on results.
After his flushes they have been doing a bed wipe down bath and they change his bedding and put him in clean hospital clothes. It isn’t pleasant while they are doing it but he always relaxes a ton after they have him all tucked in and clean.
Tim had been able to come each night and we have been watching Olympic coverage on the phone while eating dinner together. It has been such a blessing for both Kai and I to be able to see Tim. It means the world to me as he is juggling so much on top of it isn’t a short drive and yet he comes to us each night. We miss everyone so it is just a nice tie to home. The kids at home have been so helpful too. Everyone is offering up levels of comfort and normality for the healing of their brother and I love it. It warms my heart. ❤️
I apologize that this post is so late but it is because we were busy doing all the things so we could bust our little man out of ICU!
ICU Checklist before we can graduate: Vitals stabilized for transport ✅ Bleeding under control ✅ Ceasing sanguineous emesis ✅ Bring eye pressure to a safe level ✅ Peaked Swelling & then decreased to safe ✅ Wean off Fentanyl ✅ Extubation ✅ Breathe room air without O2 aid needed ✅ First swallow & digest test, water mastery ✅ Arterial line removed ✅ Second swallow and digest test, jello & mashed potatoes. ✅
We started the day early at 4 AM when they decided it was time to remove the stabilizing stitches and Arterial line out of her artery on his left arm.
His loveys were helping support him: Kai baby, GG Angel, stitches and Nurse Ocho. 🥰
We got to leave the ICU and move to room 611! Yay! 🎉
Upon arrival the trip up here prooved to be a lot for Kai and he was in significant pain. He had ibuprofen, Tylenol, and oxicodone and he was still in so much pain he was in a panic. He felt he could breathe and got very nauseous. I have dubbed this state now, “PAINIC”
They decided to give him Dilaudid to help with the pain and zofran to help with the nausea. We also made a Kai tent to shade the light as he has been very sensitive to light.
There was concern because he has been bradycardic and his Monitor is going crazy as he has dropped into a very irregular heartbeat. They are reaching out to see if another EKG should be performed. They don’t know why his BP is so high and his HR is so low and his rhythm. they came in to talk to me and said they decided to just watch him as he seems to have good mentation (cognitive function)and his blood results said he is tolerating it all ok as of now
Kai has chosen learning to smile again with both sides of his mouth and has been working on it all day after your/dads call with him and Hannah sent a picture of him smiling and said I can’t wait to see that smile again. These pictures are from the FaceTime with Hannah. 🥰
We started the day with Malakai’s vitals still being wonky with a low heart rate and high blood pressure. This combo is less than awesome.
One of the Drs. came in and assessed Malakai’s “brain drain” and discerned that he wasn’t ready to have that tube out. Malakai heard this and thought the Dr. was changing his mind and saying he wouldn’t get the ventilator out today and It made him panic. It was so hard to see him go through that. We tried to explain that he was getting it out but by that time he was so worked up he was off the charts. We discussed other pain aid options because they needed to wean him of fentanyl before they can try to extubate him. The reason being that Fentanyl blunts the gagging, and airway reflexes which is helpful for intubation but really not awesome to try and protect your airways once extubated. They decided on Dilaudid.
Malakai’s pain and anxiety were off the charts this morning. It was so hard to watch him suffer so much. His eyes were hurting 10/10 and plastics thought his right eye looked to be protruding a bit more so they called in Ophthalmology. They did a pressure test and it came back as 28 so they were discerning whether they did in fact need to do the retro bulbar hematoma “eye release” surgery.
Tim and I decided to pray a rosary over Malakai and then the Eye Dr. came in with good news that although the pressure in his right eye is elevated from the retro bulbar hematoma behind his eye was elevated, they decided that pressure alleviating drops were sufficient and he doesn’t need another surgery to release the blood pooling!!! Yay! Prayer answered!
Once we got the green light from all of the specialists and surgeons, they told us that he could be Extubated!! Praise God! Prayer answered!
He needs a little Oxygen help right now but his overall transition was also … you guessed it… Answered prayer!!! 🎉🙏🏽❤️🎉🙏🏽❤️🎉🙏🏽
A cute eight armed nurse came in to help hold his oxygen and give him a hug. 💕🥰🐙
“Kai was such a rock star during the process. He worked so well with the nurses, and they said he was the best patient for an extubation they have had. It was so great to hear Kai’s voice again afterwards.” ~ Tim
I cried when he called out for me, “Mom?!”
We are right here buddy. Mommy and Daddy aren’t going anywhere. ❤️
I feel I can even breathe better now that he has it out. There is something so hopeful about him being able to breath room air and not having a machine have that control.
I am just so thankful Kai is turning a corner. We have a long way to go yet but today has been a huge day of wins and answered prayers. I will take it. 💕
Look how stinking cute Malakai is. It is the first peaceful sleep I have seen him have. Praise God!
Malakai’s O2 dropped a bit so we repositioned nurse Ocho into full Rambo mode. 😂 Take that low oxygen! Lol
More good news! They got approval for a swallow trial for Kai!!! He is asking for Orange Jello 🍊! I’m praying he can before too long; four days without food has been rough on Kai guy.
I Pray he can swallow with no aspirations. If he is showing mastery of swallowing he won’t have to have an NJ feeding tube place. 🙏🏽❤️
Guess who had his first successful sip of water?! Yay! It is very difficult and painful for him but he did a little sip and didn’t aspirate! One step closer to orange 🍊 hello my sweet boy.
Thank you Lisa and Brian for the delicious dinner you dropped off to the front desk, it was such a wonderful gift of love.
Thank you Meryt, Mom, Jenna and Christin Who took the kiddos under your wings the past couple days and spent time with them while Tim and I are here with Kai. It means the world and give us peace.
Thank you Elijah for helping with the driving and Becki for helping with Ev and her hair while we have been gone. Neaveh, your call to Malakai really cheered him up when he was still intubated and frustrated that it was taking longer to have it out than he would like. Elijah, Becki, Isaiah, and Nevaeh it was so sweet to call and check in on your brother. It meant a lot to him and us. Ev, it was so sweet when we were FaceTiming and you asked, “Mommy? Where are you? Are you at the hopsital with Kai?” You are so smart and sweet. We are so blessed with you all as our children.
Thank you all for all your prayers, we are humbled and so very thankful for them. Please keep them coming. We have a ways to go but we are so thankful as we had a day for the record books. 💕
I am so thankful to be able to say the below system worked amazingly and Malakai in true Kai fashion amazed many medical staff members, but I am also glad we don’t have to. 🙏🏽💕
🙏🏽❤️🙏🏽 Please keep the fellow families in this PICU floor in your prayers. There have been some very sad losses today. Dear Lord, may they Rest In Peace. Please bring comfort to their families. 🙏🏽💙🙏🏽
They were going to extubate him today but he failed the ERT (Extubation Readiness Test.) again and stopped breathing and now his throat is swelling so they put him back on sedation and ventilator 😢
He kept signing that he can’t breath. It breaks my heart. His pulse ox looks stable enough but there is decent swelling around his breathing hose so I’m sure that makes Malakai feel that way. 😔
They started him on steroids to help with the swelling. It will just take a little time. Pray he response quickly. His heart rate and BP were up because he was so scared. It is breaks my heart to see him suffer so much.
I was explaining it to him that we weren’t able to Extubate today and acknowledged that I knew that he was probably very disappointed he opened his arms in asking for a hug. I laid my head On his chest and heard his little heart beating fiercely. It re-convicted me to do whatever I need to do to keep it strong, even if it’s hard on both of us. I told him that They were going to give him medicine to help it gets better and that both he and I needed sleep and that the sooner His body heals, the sooner we could take it out.
Tim came today around 2pm today and brought “hearty foods” for me to eat today per ER’s request. They also asked to have him take over so I would sleep. I had a hard time with the idea of not being alert and ready if Kai needed anything but the nurse helped me understand what it meant that they felt I had a stress induced arrhythmia episode. The nurse explained to me that it is like a mini heart attack; skipping or irregular heartbeat. It wasn’t a continuous event that was able to be caught on EKG but she explained that since I was so cold throughout my trunk, arms/hands, legs and face and my color was what they called ashed, unresponsive, and my levels of blood sugar and dehydration weren’t low enough to explain the loss of consciousness and extreme nature of my symptoms; all that it lead them to believe that it most likely was an arrhythmia episode. It helped me understand why I felt so off today and agree to take it more easy today. I am so thankful that God protected me.
Everyone’s prayers are working. Thank you for covering us. 💕
I have felt pretty rough today with very little energy so it was a blessing that Tim was here so I could get a shower, change and sleep. Tim is my rock. 💕
Becki suggested I set a timer with the song, “Oceans” by Hillsong to play at 3pm (Divine Mercy Hour) everyday as a way of connecting our prayer. Today it drove home just what I needed to hear. I forgot that I had titled it so perfectly for what I need to remember. Especially when I feel so out of control.
“God has got this.”
Jesus I trust in you.
Kai’s heart rate is rather low but they said his blood work showed he is tolerating the low HR so we have to pray that he continues to do ok in the 49/50 bpm range.
I pray tomorrow is our corner turning day. Malakai is day three or nothing to eat and he is really hungry. I tried to explain how intravenous worked but he signed “I can’t feel it. When can I eat?” Soon I pray son, soon.
Our mantra is, “just for now, not forever.”
Thank you again for your prayers. Please keep them coming. 🙏🏽❤️
The staff here has been amazing to Kai and also to me. We had a bit of a rough night last night. Kai was really agitated and kept trying to communicate to the nurse but his alphabet sign was illegible.
I had dosed off She decided she needed to wake me to help decipher. I went to his bedside and started to become very confused and I couldn’t make sense of any of the signs. My head started to spin so I went back to the couch to drink water and then went back to his bedside.
The nurse was feeling bad that she didn’t understand so I thought of getting a pad of paper for him to write on and turned to get that… that is the last thing I remember and woke surrounded by medical personnel which what I now know to be the ER.
The first thing I heard was a male medical personel saying, “Girl has got valves for days!” I was thankful after only 1 blown vein they got the IV in and blood they needed.
They wanted to transfer me to University of Colorado, Anshultz hospital. I begged them to let me go back to Malakai and to not take me away.
They did an Echo and it came back ok so they told me I had certain boxes to check by a certain amount to be able to be cleared to stay. Otherwise I would be transferred via ambulance to CUHealth.
They were very kind and made a joke about how I joined the rare Club of adults treated at Children’s Hospital as they showed me my name on the tv.
The ER doctor said that although the Echo came back within ok levels, she said my presentation and lack of responsiveness along with the fact that my blood sugar and hydration level was lower but still in the lower end of average range that I looked to be arrhythmic. I will be following up with my PCP via phone/Telehealth asap. They gave me juice first and I kept that down, followed by crackers and Gatorade. I tolerated it all and my vitals looked better so they let me stay with the promise of keeping a watchful eye of changes.
I have a pretty bad headache today but I’m ok. It has just been a lot and the stress, lack of sleep combined with not eating or drinking enough all made a yucky situation.
Malakai’s vitals are doing better today. The second blood transfusion really seems to have helped him. He is still a little hypotonic but they are hopeful that when he has less sedation that his blood pressure will be happier. He is really swollen today but they said it is inline with the healing process of all he had surgically done. and his nose is bleeding off and on still(Afrin has been used to help stop the bleeding and it seems to help) but nothing like yesterday. they said it is all within reason and that they feel his body is doing a good job absorbing the retro bulbar hematoma behind his right eye. His vitals are stable enough that they want to try and do a Malone flush as his stomach is distended and pressing on his lungs.
He did well, his body was a little slow to respond but I feel good about the output and I pray that helps his vitals even more with the anesthesia gasses released as well as clearing his colon.
Malakai has been really reaching out and wanting to communicate more as they wean him down off the Fentanyl. (They said he needs to not be as Sedated to physically/mental be ready for the whole to the system that is extubation.) He has wanted to write messages on a paper versus sign and hold my hand as much as possible (he doesn’t want me going anywhere away from him since last night’s adventure.)
I will update more tonight but I feel good about today as he started turning a huge corner after the transfusion and then his levels made an amazing turn around the moment Fr. Dan blessed him with holy water (Thank you Fr. Dan for coming on your bday yesterday and blessing Kai and us.) and after he held the 1st class relic of St. Teresa of Avila(Thank you Garrisons) and we prayed over him. God is amazing! His mercy and love is endless! 💕🙏🏽
We want to start by thanking you for all the prayers and support we have received.
Today has been a bit of a rollercoaster and so although some things where posted, I wanted to put the day all in one place.
The morning came with new promise and a new nurse, Amina. (That being said, Jamie was our nurse last night and was amazing last night as well.) we soon soon found that today wouldn’t be quite what we anticipated.
During morning rounds, Malakai was seen by all departments who all were very encouraging can caring.
Good News! Dr. French (surgeon) came and checked his eyes and Malakai said he saw only ONE OF HER!!! Praise God!! His left eye was pulling into his nose but he is so medicated she wants to retest his true vision later. His right eye is hemorrhaged though so to save potential continued damage to that eye and vision loss, they are keeping him taped to allow the eye to be braced and have a chance to heal.
Later that morning was staff Debrief. They were kind and invited me to participate. During that time I learned that Malakai actually stopped breathing more than the 1 time I knew about it but rather multiple times last night. The medical team is concerned about something inter-cranial happening with how much crainial facial work he had done, his vomiting and Fickle blood pressure.
They ordered a CT scan and took him back fairly quickly. While waiting on those said results Malakai started presenting some concerning symptoms. One, being a lot of pain and swelling in his right eye that has the hemorrhaging. In conjunction, he continued throwing up blood, his BP was low and vitals unstable.
With everything last night and His BP not being stable enough to transition there is too much risk for the chosen coma route and they have decided to continue medicating with Fentanyl but he is still fairly aware.
I had to hang up with Tim as he started having off vitals and seemed very agitated. He started signing the alphabet fast and I realized he was trying to tell me something specific. They released one of his restraints and he frantically spelt; “I can’t breathe!” They got to work suctioning down into his lungs and got a lot of thick mucus out. After that he has been very anxious.
When they took him for the CT scan they said his heart rate is really fast and his blood pressure was raising because he was really stressed and anxious. They are giving him fentanyl for pain but they are now adding an anti anxiety med. called precedex to help stabilize him. They don’t want him so anxious and stressed. His nose started to bleed when his BP went up. They said it is ok but they need him to stay more calm.
The CT scan came back showing the presence of a retro bulbar hematoma. (Blood pooling behind the eye and causing pressure on the back of the eye. They discussed doing a surgery that would drain the blood from the retro bulbar hematoma.
Since Malakai has gone through so much right now, they have decided to try and take the watch and monitor approach as the pressures in his eye is stable enough to see if the body will absorb the retro bulbar hematoma behind his right eye.
Malakai’s vitals would not stabilize on their own. They tried multiple isotonic solution boluses versus a blood transfusion to start. It only helped his numbers momentarily and so it warranted another blood transfusion. (Thank you Donor)
They also are placing a OG tube to continue to remove any contents in his stomach as he has been vomiting blood since surgery.
They will be continuing to monitor his eye and make sure it doesn’t progress further with the retro bulbar hematoma behind his right eye. As well as use a medication ointment within his lid to help with the edema in his right eye and the hemorrhaging. They will continue to keep his eyes shut with Sani-tape until the swelling goes down.
We were blessed by our friends, the Garrisons, letting us borrow a first class relic of St. Teresa of Avila to pray over Kai. Tim was able to come back to the hospital at 3:30 with the relic in hand. After praying with Kai and the doctors looking more closely at Kai’s right eye, Fr. Dan was able to come visit a little after 5pm. With him being clergy, the hospital made an exception to the two visitor rule. Kai was excited when Fr Dan arrived and waived to him with his right hand when he heard his voice. Fr Dan blessed Kai and said some prayers with us. During the prayers, Kai’s blood pressure raised into the nominal range during the prayers and since then has stayed in the nominal range ever since. Praise God, and thank you Fr Dan for giving such a gift on your birthday no less.
They will not be attempting another ERT tonight as he was not stable enough of the day to feel that it would be a fruitful option. They changed the coding of today to an extended OR recovery versus a progressive transitional stay towards general hospital and will maintain that until Malakai is more stable with less intervention.