Home Again for a while

Well, they wanted to keep us for another week, but we eventually helped them decide to let us go. The renal specialist said all we needed to do is monitor blood pressure twice a day, and since we have a professional machine at home, they said we could monitor it at home and send in the results next week. The nuerology team has switched our medications, weaning us from Keppra to Zonegran for the infantile spasms. Since mommy and daddy have 'honorary' nursing and pharmacy degrees, they decided to let us handle the medications at home, and monitor his progress or lack therof on the new medications.

We got released last night from TCH, and we headed home. We got home around 3am, and were SO relieved to finally be sleeping in our own beds, after nearly a month of sleeping in "fake" beds, minus the few days we got to stay at the Ronald McDonald house while Braden was in the PICU. While it was an act of congress to get our insurance companies straightened out and find a specialized pharmacy to fill our new meds, (complicated since some of them have to be compounded), we finally got it all figured out today, even though it took over half a day! Mommy & Daddy willmost likely be headed to bed early for some good rest:-)

We head back to Houston next Wednesday for our follow-up appointments with neurology and renal, for another EEG to see how the new meds are doing, meet with the nuero specialist, and check-in with our renal doc to ensure Braden is doing good enough with his blood pressure scores, to stay off medication.

Braden sends everyone his thanks for all the cool e-cards you sent him while he was in the hospital, and he asked mommy to scrapbook all of them so he can look back and know how much he was loved and cared about when we face tough days ahead. Thanks for being a part of our world, and reaching out to our little guy with love.

Braden goes to work with Mommy until she trains the new sitter next Friday the 8th, her first day. Caralyn will be our sitter for Mon, Wed, Fri every week. Mommy is still working out what we will do for Tues & Thurs. We will be sure to let everyone know how it is going as we try the new medications, and most definitely have an update after our trip to Houston next week. Please continue to help us pray, that God will continue to bless us, and if it is in His plan, to bestow upon us a miracle for Braden.

Kodi, Brad, Braden

Extended Stay - again

We had a surprise visitor drop in on us from LSU, Melinda, who brought Braden some adorable new ‘crib critters’ for Braden, so he is getting to know his new froggies. He has really taken to little lamby, and he looks so cute holding him!! (We will post more of his pics with little lamby in the coming days…) One of God’s little lambs, holding another:-) Melinda also found a little alligator finger puppet with a popsicle, that looks like one of Braden’s mouth brushes, as you can see he his holding in the photo.

Braden’s seizures are getting fewer still, but we are seeing some increase in the infantile spasms again, but are hoping the new dosage of Kepra will make them go away. It looks like they will be keeping us here until they go away. We thought we may be headed home today after our EEG, but since the infantile spasms are back, once again, our plans have changed, and we may not make it back until after Labor Day. Mommy and daddy are trying to come up with a plan so that neither of them misses too much work, and ensures that Braden gets the best possible care he needs.

The renal specialist is sending us for a kidney scan today. They inject an isotope into Braden’s blood stream, to get a very clear picture of his kidneys to see if there is any scarring. This is our first trip to nuclear medicine here. Those results will help determine plan of care, for now, he is off the diaretic which was to help his swelling and help counteract those medicines he is no longer on that caused the calcium deposits in the first place.

A hospital volunteer let us pick out a blanket that some local women make for the young kids, we thought the dalmations were cute and would help his eyesight continue to improve with the white, black, and red contrasting.

The fundraiser in Wichita for September 17th, the fund-matching event, I believe will be a dinner and bingo. Some of you have e-mailed asking where and to whom you can send a check. It has to arrive by Monday, September 18th to be matched. Here is the information – please make out the check to “St. Andrews Lutheran Church”, and in the memo line, write “Braden Wilson Fundraiser”. You can mail the check to St. Andrews Lutheran Church at 2555 Hyacinth, Wichita, KS 67204.

We got another visitor last night, our friend Greg Blanchard from Baton Rouge came in for business with DOW Chemical. While I am sure that his pregnant wife Susie was hoping she could be with us, I know she is busy back home taking care of things for usJ It was a nice treat to get out of the hospital air we have been breathing for some time now, and shake off a little cabin fever with a dinner treat from our generous friends, the Blanchards.

Thanks to everyone who continues to show us your love and support, and most importantly your words of kindness and encouragement. Our hearts are full to know that so many people out there care about us, even those we only know by name or acquaintance. God’s blessings are abundant!

Kodi, Brad, Braden

Good news about his heart

These are pics we took while still at OLOL, but too cute with the whole family in our LSU gear.

We are enjoying our care package from our friends at Sunday School… treats, books, magazines, spa care, personal care items, phone card, etc. Some of you have sent us cards from the website, and cards in the mail – both of which have helped keep our spirits high.

Braden’s seizures are getting fewer again, but occasionally we see some of what we saw with the infantile spasms, so we are a little concerned, but continue to pray that God will lead our specialists to the right actions for Braden’s case.

We heard back from our EKG, and while there are a few slight abnormalities, they said there is nothing for us to worry about long-term, and that the renal team will come up with a plan of action to address the high blood pressure, which was one of the expected abnormalities they saw… a particular valve was thickened due to the high blood pressure. He has a slight backflow in one area, but nothing significant enough to be considered a heart murmer. So Braden passes one more test!!! We won’t confer with the renal specialist until Monday for our plan of care.

When you have a special needs baby, you celebrate even the smallest of milestones, because you know just how hard your child had to work to get there, to be ‘normal’, to try to keep up with what his peers will do naturally. We are excited to report that Braden is playing with his hands a lot, he is experimenting with different ways to use his voice, and figured out how to stretch not just his legs, but his arms too when he is waking up. After two and a half weeks in the hospital, there has not been much time for our own therapy regimen, so we suspect we will have some ‘rebuilding’ to do once we are finally home again.

Brad’s folks are working with our friend Susanna to have our home tested, to make sure it is a safe place for Braden to play, live, and breathe. We may have to have some mold abatement done, in order to provide a healthy environment for Braden, as the previous owners were not prudent in using moisture-resistant materials in Braden’s bathroom, and the drywall behind the tile remains moist – a potential breeding ground for dangerous mold to grow.

For those who live in Wichita, SAVE THE DATE for SEPTEMBER 17th, as Brad’s folks are planning a fund-raiser dinner at our home church – I will post the details when we have them. I do know that this will be a FUND-MATCHING event, so any donation given, will be matched to the dollar by the church, to pay for Braden’s medical bills and needs. My family has also opened a checking account in Braden’s name that will allow for people to make donations too as well – we will post details on that when we have them as well. They will be putting information into local newspapers. We know that there are a few other things out there in the works, and we are so grateful to have such wonderful family and friends to help us meet our needs.

We would like to thank everyone who has sent us well-wishes, e-mails, cards, phone calls, prayers, and more… know that Brad and I realize how truly blessed we are to be surrounded by such a wonderful ‘community’ of family, friends, and acquaintances. Your words and acts of kindness are so appreciated, and we know that God is showing us his love through all of you. We also recognize that we could not get through this ordeal without putting HIM first, and trusting in HIS plan. We know that he is with us, as we read in Zechariah “…They will pass through the sea of trouble…this will strengthen them in the Lord, and in his name they will walk”, declares the Lord. We shall hold onto this passage, and know that God is with us on our journey to find answers and care for Braden. Thanks for continuing to lift us up in His name.

Kodi, Brad, Braden

Still waiting on EKG results

Today is Braden’s fourth month birthday, and he had many visitors. Ronda and Chase from our Bible Study class stopped through with a care package from the group, and Nurse Kristy popped in to see how Braden was doing. Braden has had fun getting to know some of his new crib buddies – the lamb and bunny, gifts from Sunday School. Bunny is brother to our Frog!

We did not have to get a pick line today, because the IV antibiotics finished up today, and our contagious contact order is over!! All panels were still negative today. YEAH – mommy and daddy get to hold Braden without restriction!! Our secretions continue to decrease, and our labored breathing has yet to rear its ugly head again, so some things are looking up for us.

We will hear the results from our EKG tomorrow morning, the cardiologist will be coming to see us. We know that they saw some abnormalities, but we are hoping they are nothing life-threatening, as we are thinking that they would have come to talk to us about it by now.

I guess once the cardiologist has conferred with the renal specialist, we will know more about our outlook regarding our hypertension. Please continue to keep us all in your prayers, as this is still a very stressful time.

Kodi, Brad, Braden

Still here for a bit

Today we will share pictures of the room we are in… note all the little writings on the wall – those are all of the cards you have sent Braden, his collection continues to grow! The other picture is from our last day in the PICU, with our nurse Kristy, we miss her already.

We go the results from our EEG, and it showed multi-focal seizure activity. They have decided to increase the dosage of Kepra, as it is the right medicine for the seizures he his having, so they are hoping the increased dosage will stop his seizures altogether, as we have seen an increase in activity since switching to Kepra. They will continue to increase the dosage over the coming days, and do another EEG on Tuesday to see where we are. Kepra can be taken orally (through his G-tube), so it is unlikely we will get a pick line.

The pediatric opthamalogist, says Braden has perfect eyes, so we should not need any surgery to correct anything anatomical. The renal specialist wanted to wait to determine a course of action after we had an EKG done, and we had that done today, it lasted for two hours! We are hoping that the endurance does not mean we will have difficult news ahead, but we will see what tomorrow brings.

Today his secretions have been MUCH less significant, and the medicine we are on to reduce them seems to be working. We no longer have a personal respiratory therapist spending their entire day with usJ We have barely met any of them since coming to the PCU, so it seems to be working.

We will be here through the middle of next week, at minimum. Some friends from church are heading this way through Houston and dropping a care package from our entire Sunday School class, it will be nice to have something from our friends back in BR. They will be dropping in on us tomorrow afternoon.

Stay tuned for the next update tomorrow, once we hear from the cardiology and renal team about our EKG, we will send an update. Please continue to keep us all in your prayers during this stressful time.

Kodi, Brad, Braden

From PICU to the PCU

Yesterday they moved us from the PICU to the PCU (Progressive Care Unit), which is a unit also closely monitored for respiratory and cardiac, but less critical. We are in PCU, Room 718. Braden was almost sent back to the PICU not long after arriving in our new digs, as he finally showed the doctors here how intense and labored his breathing is. However, food and swaddling settled him for awhile. We think his clock is a little off, as he partied with both mommy and daddy in the wee hours of the morning. Maybe it wasn’t so terrible, as the pull-out couch in the room is built for one person, but mommy and daddy snuggled up to share.

Today we had another EEG to see what his little seizures look like, as we have seen a spike in that activity since taking him off the ACTH and topimax, and putting him on Kepra. We will know something to share tomorrow. We also saw a pediatric opthamalogist, as we are a little concerned about his eyesight, and they examined him and dilated his pupils to see if our issues are neurological or anatomical.

His blood pressure is still elevated, but better than it was while on ACTH. They are going to do an echo (EKG) on his heart tomorrow to see if everything there still looks OK. They have also discussed sending in a renal specialist to figure out how to manage his kidney stones and calcium deposits. We will see…

They don’t think we would have to stay much past Sunday if we are only addressing the viral infection, but our status could change depending on what the neuro team wants to do to treat the seizures, that may delay us getting home, as there may be additional IV therapy they want to do. If that is the case, then we will probably get the pick line put in on Friday.

They have put him on some medications to help slow his secretions, and we will have to see how he does with that, before they start considering looking at a tracheostomy, if that is the best option for Braden. We want to give him a chance post-seizure activity to see how he would do in therapy, as pre-seizure activity, he was doing well enough that they were ready to do another swallow study to see if he would be ready for anything by mouth. He has gotten a little drooly since the onset of the seizures, so we are hoping to see some improvement, and time may tell how he does with therapy. Again, another wait and see. We are wanting to hold off and give him a chance, as this procedure would mean a whole additional set of issues to deal with, and considerations for care. More waiting…

Thanks to everyone who has sent Braden an e-card – we have them posted in his room. The picture is from our PICU room, which shows the neat designs they offer, and the backside contains your personalized messages for him. Braden has about 40 cards now, posted on the wall in our new room.

Mommy had an answered prayer when a massage therapist was waiting for a volunteer the other day as we were leaving the Ronald McDonald House. Her back was in a twist until this lady showed up!

The other picture is of Braden watching his TV like a big boy:-) He started doing this just a few weeks ago, I think he is fascinated by the moving colors. A few nurses at the last hospital walked past his bed, and then back-tracked…. They were cracking up about how serious he was, watching his “stories”. As you can see, he enjoys the TV – hopefully this is not how he got his little Michelin baby look:-)

You can reach us by phone in our room (718) at 832-826-0770 if you would like to visit, we would welcome the chat, provided you don’t make us tell you the whole back-story again:-) In a teaching hospital, we have to do that A LOT. We appreciate everyone’s well-wishes and prayers, we will send another update soon.

Kodi, Brad, Braden

Back in Mommy's arms...

As you can see, we can at least hold him occasionally, still in gowns, but it is good for our morale! All the nurses were always asking to see pictures of the little guy, so mommy made some signs for the door, with photos from daddy's wallet. They all seem to really enjoy them.

Today, we went to the operating room and got anethesia for a laryngoscopy and bronchoscopy. The results were amazing... Braden has BOTH vocal cords working, and his airway is clear. I will trly to post those pics at the bottom - you can see his vocal cords and his lung passages. You can also see that we have NO MORE BREATHING TUBE!!!! YEAH!! So we are just waiting for more results and further investigation into our kidney stones for the cause, as the docs don't want to dismiss it as all being blamed on the topimax.

Our nurse Kristy had us Saturday and requested us today... she wants to adopt Braden to take him home to her own boys, ages 1 & 2:-) We hope to have her with us the days she is on, as it is nice for continuity of care - for Braden's sake and ours too.

God can work miracles, and we will wait patiently for ours... but He is still almighty and showing his mercy, as my sister Shala has officially been declared CANCER-FREE after three grueling weeks of radiation therapy and what we affectionately call 'medically induced bulemia'. PRAISE JESUS!!!

We found one more address, that will probably be the MOST reliable while we are here, as it was on our video monitor. You can send cards to:
Braden Wilson
Texas Children's Hospital
PICU, Pod 1, Bed 6
6621 Fannin
Houston, TX 77030

Thanks for all your continued support and love!! Kodi and the Beez

How to Reach Us

The first pic was taken at OLOL... Braden started moving his arms "with purpose" about two weeks ago, and his favorite "chill" position is kicking his arm out to the side like you see. He also is growing more fond of his little froggy - yep, another frog, but this one is stuffed:-)

The second pic was taken two days before leaving OLOL - the bandaid is where his IV was at.

Some of you have asked where you can send us a card... we are staying at the Ronald McDonald House at TCH, 6621 Fannin Street AB485, Houston, TX 77030-2399 Attn: Guest Braden Wilson Family (Try to let us know if you are sending something, so we can alert the volunteer reception desk).

We still don't have clearance to take off the gowns and gloves - that has to come from the infectious control team, and since they suspect he could have a virus, they may keep that order until next week... we snuck in a good picture without all of that on, since we were not touching him, post-baptism.

We hope to have news to share tomorrow evening after the ENT does the bronchial scope, and perhaps Braden will be extabated. He is definitely ready for that silly tube to be OUT of his throat, he is constantly pushing at it with his tongue. At least this will mean we can hold him, even though he will still be tethered, and we will be gowned up.

Good night to all - thanks for all the wonderful cards, e-mails, prayers, and thoughts... we could not be where we are without all your incredible support. Love to all,
Kodi, Brad, Braden

Baptism Blessings

My cousin Sharon called me yesterday and within five minutes her old youth minister, now a pastor, had called us to see how he could help. We arranged for him to come baptize Braden last evening in the hospital. It will be as memorable for him, as it will us, as it was his first baptism! Pastor Dan Hauser from Crosspoint Church in Katy, TX did a wonderful job, and godparents Uncle Brian & Aunt Jenny joined us by speakerphone. Not to worry - we will be doing a renewal ceremony in Wichita back at our home church for family to attend:-)

Braden is a little more awake today, and we are waiting the final results from his cultures to get the 'clear' on no more gowns & gloves - so far everything has been negative. Since everything so far has been negative, they are going to put a hold on putting in a pick line (central line in the arm), because if there is no need to continue IV antibiotics, then we may not need the pick line. So we have a reprieve on that for one day to see how things play out. Monday he is still scheduled for a bronchial scope to see how the vocal cords are working. At that time, they will make the decision to remove the breathing tube if he does fine breathing on his own, and we have no reason to believe that he would still need it. Yesterday and today he was on CPAP, so essentially breathing on his own, but the machine ensures he breathes deep breaths and not shallow - and he is doing fine with that.

His nurses always say how adorable he is... so we are anxious to get all that tape off his face, so he can be clearly seen for the cutie-pie he really is. Mom & Dad are fine and learning the hospital, and grabbing rest when we can.

Some of you have figured out how to send Braden a little greeting, and I wanted to post it for the rest of you. We will be posting his greeting cards in his room for him... you can visit http://www.texaschildrenshospital.org/parents/patientgreeting/default.aspx to send him a personalized greeting card that they print out on cute cards and hand deliver to his room daily.

Thanks so much for your wonderful support and prayers - we will be in touch with Braden's progress!

Kodi, Brad, Braden

First Days at TCH - MEDICAL UPDATE

Since we have been here, they have taken blood cultures, urine analyses, done an EEG, MRI, and sent off for more genetics testing and metabolic panels. A lot of this is re-testing, but for their own satisfaction, they want to see newer results. We have an entire neurological TEAM working on our case. TX Children’s is a teaching hospital, so we have pediatricians, resident assistants, and fellows all seeking further accreditation in neurology working as a team on Braden’s case – not to mention a renowned neurologist.

Braden has suffered a few side affects from his seizure medicines, and his stint in the hospital. The ACTH has made him hypertensive (high blood pressure), and the sedation keeping him still has caused some puffiness & swelling – making him look like a little Michelen Tire baby. So they are giving him some counteractive medication, and a nutritionist is reviewing his caloric intake and it may have to be adjusted some. They are trying a higher dose of ACTH, and if they see no further improvement in his seizure activity, we will stop that therapy soon. They have decided to take him off the topimax, as it has given our poor baby renal (kidney) stones and calcium deposits. They are putting him on a replacement drug that will be less harsh on that system, as he has good blood flow to the kidney area, meaning there is no other cause for the high blood pressure. The medicine they are giving for the swelling should also lower his blood pressure.


Tonight we are having Braden baptized by a local Lutheran Pastor… so if you want to pray with us and be there in spirit, we are doing it at 8:30 pm. Please keep praying for Braden’s recovery, and know that he is in the best place possible. As many of you have asked how you can specifically help, we are working on a few ideas, and will try to post something in a day or two about how you can help from far away. We appreciate the offers to come be with us, but as this is a very stressful time, Brad and I are leaning on each other right now – and in a city we don’t know, it would put more stress on us to feel obliged to take care of anyone other than ourselves… but know that it means SO MUCH to us that some of you have offered, and that we may take you up on that at a later date.

Check back soon – we will update every few days as we can! Peace and love…
Kodi, Brad, & Braden

First Days at Texas Children's Hospital

Since we have transferred to TX Children’s, first know that our first order of business was to make it here to see Dr Wilfong, the neuro specialist. So please don’t panic because we were transferred. We were receiving good care at Our Lady of the Lake Children’s hospital, for the treatment of his pneumonia, but it was those last few days where he was going into shock that we were not getting answers for “why”. That situation gave us concern that Braden might need a higher level of care. His situation is not that common, and so we felt most comfortable getting him to a place where he can be seen by renowned specialists, and hopefully provide us with some long awaited answers.

The Kangaroo Crew was delayed in New Orleans, and we didn’t get to leave until around 11pm, and arrived at the hospital around 1am. Braden’s first flight was fine, he traveled probably better than mommy, as those quick flights tend to make me a little whoozy on a twin-propJ It took awhile to get the little man settled in his new digs. Because they don’t know why he went into shock while at OLOL, and if the serratia has been totally eradicated, we were put under contact precautions, so anytime we go see him we gown up and put gloves on. Braden was intubated and put on a ventilator before noon while at OLOL, because his breathing was so labored, and they would have to intubate for transport anyway – it allowed him to rest some. However, the tube has given all staff’s some issues to deal with. At about 3:30 am after arriving at the hospital, while getting him settled, they decided that his tube was too high, and they wanted to place it a little lower.

When they did this, they put it too far down, and it was only inflating the right ventricle, leaving the left lung to collapse. This caused his blood oxygen saturation (sats) to drop drastically, and they “bagged” him, using manual labor to breathe for him until they fixed the problem. Mommy was panicked, and had a rough time watching Braden go through such a struggle when by herself, but the staff was quick to calm her and provide comfort that they are taking good care of him. He recovered fine, and settled down with more sedation at around 4 am, allowing mommy to catch some Z’s for a few hours in the PICU waiting room – they have a customer service desk rep who helps acclimate the parents, and they have fully reclining chairs, pillows, blankets, towels, and lockers. The staff is very compassionate, and helpful. YOU CAN LEAVE US MESSAGES AT THE PICU WAITING AREA HELP DESK AT 832-824-5949. We cannot use our cell phones while in with Braden, but if we are in the room when you call for us, they can connect you directly to us.

The nursing staff has been wonderful, they helped us get set up at the Ronald McDonald House over in the next tower. It’s like a little hotel, but you can’t leave your stuff there overnight, so we have to repack from the truck every day. You can also leave messages for us there while we stay there (since our cell phones don’t get service IN the rooms). A friend of Jeff Pon (Brad’s co-worker) lives about 6 blocks from here and is storing all of Braden’s medical equipment for us, so it will be safer than staying in the truck in the parking garage.

I will post a second update with our current medical status and more pics... so click the next blog to check that out...
K, B, Baby B

Up, Up, Up little bear...

Those of you in the Wilson family know what I am talking about. The med team from TCH arrived at 10pm. They had some delays in NOLA. Apparently there is a FCC rule about pilots and how long they fly. The med team had to go back to Houston and get a night crew to fly us to Houston. None the less they showed up in a blaze of glory and accessed Braden and transfered care to TCH from the hospital here. Of course this took some time and Kodi and I followed them to the airport. We were granted access to the run way to follow the ambulance and Braden to the plane. It is a twin engine prop plane, so Kodi was not that excited but it was a 45min flight. They went wheels up a little after 12 midnight. We will wait and make a game plan Friday morning to determine when I leave to meet them up there. Thank you to everyone who has helped us both here in BR and across the country. Kodi and I could not do this alone. We will try to update the blog the best we can on the road.

BRADLEY, KODI, and BRADEN

Wheels up...

Yesterday, 8/16, was a long day. I arrived at the hospital at noon and Braden was going into shock. Of course this was a major concern and we were taken back to the ICU. We worked with him for about an two hours to get him stable. I was holding his arms and helping the nurse get an IV started and was there with them every step of the way. Our Respiratory Therapist saved the day by converting his mask into a modified "brown paper sack" to calm him down. After this episode and with some encouragement from Susie and her mother, we decided that it would be in our best interest to request a transfer to Children’s in Houston. Of course this sounds easy but there is a lot of background work that has to be done in order to make this happen. Our Drs are talking with their Drs on the best mode and time to transport. We will most likely leave today, 8/17, via medical transport. We were told that this can happen at a moments notice and Kodi is prepared to travel with him and I will follow up either tomorrow or Saturday. So, if there is not an update for awhile, please know that Debby and Susan will have the most current info to share. Kodi and I are hanging tough and doing everything we can to get Braden the care he deserves.

Take care and God Bless,

BRADLEY

Our Little Fighter

Great Aunt Jeannie & Dave Merrill sent Braden the adorable bath robe - I think he looks like a boxer in it:-) The bear he is being buddies with was his first gift bear from Nana and Grandpa Wilson.

We are out of the PICU and into a regular room. While we can't quite breathe a sigh of relief that it is over, at least we have improved enough to move into a room. They are treating us with intravenous antibiotics, as they are the strongest available - we really need to knock this thing out. We didn't know until we were making progress that this kind of pnuemonia has a 25 - 50% fatality rate - so we are lucky that we had good doctors to start our antibiotics the day we were admitted into the Emergency Room. Since Braden has an immune-suppressed system due to the steriod ACTH shots, however a 'normal' patient would be treated, we have to go stronger and longer. So a normal patient receiving antibiotics would get a 10-day treatment, we will be getting a 14 to 21 day treatment. I wonder if we need to put in a change of address form with the hospital address?

Braden is having a hard time keeping the IV's... last night they tried 7 times to get a vein and they all blew... and on try 8 he got one in the neck from the PICU doctor. It has already come out again, so they will probably try his head somewhere. Mommy has a hard time watching them fail at getting the IV in, so Daddy has been keeping our little trooper company during those procedures.

Please continue to pray for his recovery. If you need to reach us, we are on our cell phones, and staying at the 'hotel' hospital...

Kodi, Brad, & Braden

Doing It His Way in the PICU

Well, it has been an adventurous few days in the PICU. Braden has taken us along on a rollercoaster ride... he would seem better, then get worse, then seem better, then get worse again. Probably our scariest moment was Friday afternoon he started having apnea, so the docs put him on Heliox (mix of helium & oxygen)... hoping that the helium would help open up the bronchioli and make things 'slippery' in his lungs, in hopes that it would loosen things up for suction, and allow him to do less work to breathe. Well, this had the opposite effect on Braden, as his oxygen saturation dipped, he was running a marathon to breathe, and was tiring out. We were literally 5 mintues away from intibating him before the doc put him back on plain oxygen where Braden seemed to breathe easier and get his saturation back up... but it was a close call. Our friends Dwayne and Kim took us to dinner to have a few hours of non-doctors/nurses/hospital air, and it was a well-needed emotional break.

THE FROG... when I was a young child, frogs used to scare me. One time my grandpa told me that frogs were good luck. While I don't know if he told me that to get me to quit screaming, or if there really is some myth or legend that frogs are good luck, I have believed in it ever since. This morning I went to the kitchen to let out a sream, as I was startled when a tree frog greeted me by jumping out of my sink straight at me!! I took it as a sign of good luck, as I told Brad the story my grandpa told me, and that I was hoping that this would be a sign we would have some good luck today.

We feel that we are turning a corner, as Braden was working less harder to breathe today, and was crying when we suctioned him, and was fussing because he was hungry - so we know he was feeling better:-) We got to start him back on a very slow feed today, to ensure he won't aspirate anymore, and at some point we will have to repeat the Upper GI to ensure the surgery we had done in the hospital (nissen fundiplication) is stil doing it's job. The pulmonologist believes Braden is micro-aspirating, and we will see him on an outpatient basis after we are discharged. He may be ordering more machines for us to use... yippee. Braden's blood culture finally showed that he in fact does have a pnuemonia called "serratia pnuemonia". It is easy to know if you have this kind of pnuemonia once the mucus starts coming out of the lungs, as when it is exposed to air, it turns blood red. The pulmonologist believes this happened because Braden is a poor swallower, cannot handle all his secretions, and could be microaspirating... added to the fact that we have a suppressed immune system, our scenario was ripe for such a disaster.

Thanks for everyone who has called or written to check in on us, we appreciate the support and your continued prayers. We will update again soon.

Kodi, Brad, & Braden

Not Yet Part 2

Well, our trip to Houston has been temporarily put on hold, as Brad has updated you on. Braden’s chest cold that started 3 weeks ago (about the same time our seizures started), has manifested into something bigger. The 10 days of amoxocyllin made him better towards the end of the medication, but 3 days later he was struggling again to breathe and just working incredibly hard to do so. After two days of a Z-pack and consecutive days to the doctor’s office to treat our bronchitis without improvement, we landed in the Emergency Room at Our Lady of the Lake Children’s Hospital. They moved us into a regular room by noon… our pediatrician’s plan was to get us admitted to get seen by the only pediatric pulmonologist in town, who this morning decided we should be moved to the PICU to be monitored more closely on a 24/7 basis.

The doctors feel we may have a rare form of pneumonia (something called PCP), directly related to the ACTH injections. If you research ACTH, you will come across information regarding the treatment of AIDS, as this is how it was initially used, and where they then discovered this rare form of pneumonia related to the ACTH, as it breaks down your immunization system. So they are treating us as if we have this, and aggressively giving us multiple antibiotics to kill off whatever we have. We may have more answers in a few days as our blood and sputum cultures have a chance to cultivate.

My wonderful step-sister-in-law, Regina was able to get us a room in a Marriott in Houston (she works for Marriott in Denver), and we are so appreciative – we hope that we will still be able to use the room for our delayed trip. Thanks Regina, Cody, and Lance for helping us out!! We have temporarily rescheduled our trip to Houston for Sept. 6th, but may go sooner if our health allows.

We will try to update the blog again when we have some answers to share, but like usual, we are still waiting. We got two new machines this past week, a nebulizer and a suction machine. When Braden has his friends over to play, he will get to share his fancy “toys” that none of the other kids have. I posted a pic of Brad suctioning our little man... although we are in the hospital in this picture, the night before this was taken, Braden got one all his own for the house... so Brad and I continue to get our nursing degree before Braden turns one.

Keep us in your prayers to get us through this rough patch, so we can hopefully recover unscathed.
Love to all,
Kodi, Brad, & Braden

Not yet...

Please forgive the short update, but the past two days have been crazy. First we were going to Houston, then we couldn't, then we rescheduled some days so we could, but finally we are not able to go. Braden was admitted to the Children's Hospital here yesterday for difficulty breathing do to his bronchitis. Kodi and I stayed over night with him hoping that we would get the green light to make the trip today. Unfortunately, his condition did not improve enough for the Dr to allow us to go. Instead he moved us down the hall to the ICU. Yes, we are back in the ICU. He is having such a hard time breathing that they are afraid that if he tires out, then things could go down hill fast. I am sorry to say that this is as much news as we have at this time. We are on an hour by hour watch now and only time will tell when we are able to reschedule. Thanks for all the thoughts and prayers. We know that God is with us and he is watching over Braden and we pray for his healing hands and that he holds our family close.

BRADLEY

Answered Prayer - We head to Houston!

A prayer has been answered for us. I e-mailed Dr. Wilfong on a whim, not expecting to really even hear back from him, and his nurse called to offer us an appointment!! So the three of us will be headed to Houston next week to have an EEG on Thursday and our consultation on Friday.

Even better news, is that the second medication we have started (topimax) seems to be making a difference, as Braden's seizures are far less severe in intensity, and he has longer periods that are seizure-free!!

We are so excited, it's like Christmas for us, that we feel we will be given the best shot at long-term and short-term solutions with this leading specialist on our case. It may even be more for mom & dad's reassurrance that we are getting the best possible care for Braden, but he will reap the benefits. Thank you for those who have continued to pray for us.

Some additional fun facts about Braden as he grows, is that he is starting to use his voice a lot more to coo at you or offer disapproval of whatever change you are putting him through:-) When he dreams, he raises his eyebrows, wrinkles his forehead, and will purse his lips like he is blowing air kisses at you - it is adorable to watch. He is spending more time on his tummy, showing improvement in the strength of keeping his head up (but still cannot lift it forward at his own will), and is finally relaxing those long legs and stretching them out. He is getting so chunky on the steroids, he is getting more chins, and rolls on his arms and legs, which are just too cute - he is 13 pounds now and seems so substantial to hold these days! He grew out of his first newborn outfit, and we have to change the straps on his carseat to accomodate this growing boy.

We meet again with our local neurologist on Monday, so we may have an update for you there. Right now we are still interviewing sitters for Braden, and attempting to contact state agencies to see if we qualify for financial assistance to be able to provide him quality in-home daycare that is one-on-one if at all possible. We will keep you all posted as things progress here, and thanks for all you wonderful postings, encouragement, and checking our blog!

Much love -
Kodi, Brad, & Braden

Seizure Update, part 2

After two weeks of seizures and 11 days of the ACTH, we have not seen any significant improvement of Braden's seizures. At this point we are very concerned about them, because early intervention and cessation from all we have been reading is the key to a positive outlook for his future.

I sent his logs to the neuro nurse, since the doc is out on vacation this week. She called the neuro to ask about my suggestion about adding or switching to another medication. The doc decided we should add one of the medications I suggested (from all the research studies I have read on the subject), and last night we added topiramate to his regimen. Once a day for the first 4 nights, and then twice a day thereafter. I am hoping that this combination will provide some relief and we will see improvement... if we do not see significant improvement when we see the nuero again on Monday, Brad & I will be looking to get to Houston in a hurry to see a specialist we have been reading about who is considered a 'guru' in this area, he is the chief at Houstons' Childrens Hospital (a leading center for pediatric neurology), and is a specialist on seizures and infantile spasms, and has authored many papers and conferences on the subject. He was recommended by one of our home nurses, as Dr. Angus Wilfong was able to help her nephew with great success.

We are hoping medication works, because they say that once you have tried 3 medications without success, then your next alternative is brain surgery, and obviously we don't want to go down that road if we don't have to.

I am currently interviewing ladies to take care of Braden, and think we are close to finding the right solution for us - we will certainly keep you posted as things progress there. Thank you for all your prayers, and please continue to keep us lifted there, as we are on a difficult road and need all the support we can get.

"Bless the Lord, O my soul, and all that is within me, bless His holy name. Bless the Lord, O my soul, and forget not all His benefits: He forgives all your iniquities, He heals all your diseases." Psalms 103:1-3

Kodi, Brad, & Braden