- After our 18 day hospitalization in MAY for William we went home and were doing well for a few days. We were in the hospital from May 7th-May 24th, 2011 (last time I posted a blog update, in May was when we were at PCH)
- On May 26, my home health RN for William returned back to work after our long hospital stay. By Friday May 27th, William was becoming frustrated and angry with his Home RN and started needing increased oxygen flow. He did this for a few days, he would be fine and stable, then when his RN would arrive at 9 am, by 10 am he was having a fit. His fits were concerning his home health RN so much that she was basically begging me o take home to the hospital! I completely understood her concern from a clinical aspect- the kid was sounding wheezy, de-saturating needing increased O2. ut the draw back for me was the minute the home RN would leave at 5pm, William would get over his fit. I was able to turn down his flow of Oxygen, and he would turn back into his calm cool and collective self. So this went on for a few days, then I had the nurse not come in for a few days, and William did well. After I figured William would tolerate the RN, I had her come back. William was continually getting sicker and sicker. Each day was ticked off and angry. His pulmonologist (Dr. Drewek, among otehrs from the PCH Pulm division) had William on a prolonged boost of Lung Steroids to try and help him through his troubles. Nothing worked. He hated his home RN, and I wanted her help so bad and all he wanted was mommy. Richie was still working in California, and was leaving for Canada for a 10 day job on June 7. As William continued to get sicker and sicker and I was recognizing that the lung steroids were not helping and his oxygen needs became greater and greater, I finally took him into PCH ED on Sunday June 12, 2011.
- On Sunday June 12, I had a long weekend with William- worrying about him as I watched him beginning to really struggle to breath. Hoping that he would just feel better. I kept thinking I needed to take him to the hospital, but I was trying my hardest to manage at home and keep him out of the hospital! His baseline oxygen flow is 0.2 Liters per Minute which is a very very low flow of oxygen. By Snday June 12 he was needing 1.5-2 LPM. Not Good! So I packed up, had my mom come get Isabell and I headed to PCH. (Phoenix Children's Hospital) Of course William was admitted, and to the 4th floor monitoring unit for overnight observation and to see what is up wit that increased O2 needs. He had no fevers or signs of infection so we were stumped.
- Monday June 13, 2011- a day I will NEVER forget, although I would like to. At 9:30 am, SWEET Nurse Lauren who was caring for William that day came in to check on William because he was de-saturating a little bit. SO she and I decided to suction him because he sounded junky. During the suctioning he de-saturated so low (to 26%) and we had to turn the oxygen flow to 15 LPM and Lauren called a Clinical Assessment Team Code which means the physicians close by, and physicians from the ICU evaluate the child to see if the incident was severe enough to transfer to the ICU for monitoring or if the child is ok. The team evaluated William, and he had recovered from his episode and they all agreed that if he did it again he needed to go to the Peds ICU for monitoring. Well less than 15 minutes later, he did it again and RN Lauren, PCT Stephen, and an RT who I don't remember I am drawing a blank and I rushed William to the PICU with a special oxygen mask on Williams face called Easy-Pap. We couldn't take that mask off his face, so the RN and PCT pushed the crib down the hallway, and the RT held the mask tightly against his face- while I led the way with our wagon full of stuff. We were finally up in the NEW PICU of the newly built PCH tower- on the 6th floor by 11:30ish. After the PICU team worked all their magic to relieve William- there was no doubt it WILLIAM WAS IN FULL RESPIRATORY FAILURE. Nurse Practitioner who I adore had a conversation with me that I never wanted to hear. It was a conversation where she proclaimed to me that her and her wonderful team of Intensivists, Respiratory Therapists and ICU RN's had done all they could do for William and he was not responding to the treatment at hand. She recommended to me that the best relief for William would to be intubated, and placed on a ventilator for breathing support until we figure out why William is in Respiratory Failure. I wanted anything that could help my baby boy, and anything to give him relief. I also had a brief little pow wow with one of my favorite RT's at PCH (Jimmy James) who has worked with William during several other hospitalizations openly and honestly told me that he felt the ventilator was a good idea. and he felt that William would be ok! That's ALL I needed to hear, So a huge THANKS to Jimmy James. I value that little convo we had moments before I gave the official "Go Ahead" to intubate my baby.
- William ended up sedated and intubated for 11 days. Richie got home from his Canada work trip on June 17. After having many discussions with our medical team, and having some tests doe on William we discovered that William was not going to be able to breath on his own due to a severely, possibly paralyzed diaphragm. And we could keep him sedated and intubated longer if we wished to see if he would start breathing on his own, or go for the option of having a trach placed into Williams airway, place him on a home ventilator and get him prepared to go home trach-vented. So Richie and I decided that we wanted to go with the trach option. We hated to see him intubated, sedated, strapped down to the bed and miserable. We weren't really able to hold him, and every time he would move around or thrash around we would have to pump him full of Morphine, Atavan, Versed, Choloral, and he was on a continuous Dex drip which they kept increasing the dose, and had a clonodine patch. We hated hated HATED to see our little guy like this. It was the absolute roughest thing a parent SHOULDN'T ever have to see thier child go through.
- Saturday June 2, 2011 -Surgery Day- Our ENT Dr. Milligan agreed to take on the case to place William's trach sooner than later and came in for procedure on a Saturday!! What a guy. Thanks to intensivist Dr. Zorn WHO I LLLLOOOOOOVVVVEEEEEE and adore for arranging this for our William. We love you for all you do for our William while we are unfortunately inpatient at PCH's PICU. So anyhow, SURGERY went PERFECT! and it was sooooooo great and Fantastic, and WONDERFUL to see our sweet baby boys face, see him awakening from all the sedation, seeing a smile, KISSING his cheeks, and holding him for the first time in nearly 2 weeks. Richie and I were a set of Happy Parents that day. ANd our boy was a happy camper, and we immediately felt relief that we made the right decision to trach him, because he was already doing so well.
- Tuesday June 21, 2011. William had a Brain MRI, a follow up from last years MRI to track the large cystic space on his brain. We were hit with some very very very unfortunate news, and there were some unfortunate new findings on Williams MRI. He was diagnosed with BRAIN ATROPHY. Brain Atrophy is not a great diagnosis, it means that the brain tissue is shrinking. There isn't any evidence to tell us how progressive Williams Brain Atrophy will be, so we have decided to make sure we continue to provide him with the VERY BEST that we can, LOVE him unconditionally like we already do, CELEBRATE him every day, and make the BEST memories that we possibly can. We are not going to let his condition or handicap hold us back and we are not going to let this force us to be house bound. There are times that it is better we just stay home when William is sicker than other times, but on the good days we are going to be Up and RUNNING!
- Saturday July 2, 2011- William had his first trach change and we were transferred from the PICU to the 4th floor monitoring trach and airway unit to start our journey of learning all about Williams new trach, and vent and how to care for it. Richie and I ended up learning our new 'Stuff" so quickly that we discharged on July 14th!
- July 14, 2011- We had to ride in an ambulance for our first time home from the hospital after being trach/vented. (Hospital Protocol) It was fun! William did great during our drive home. When we got home, we unloaded and we were so happy to be home! We had already had our supply companies bring out supplies and oxygen etc so we already had everything we needed at home. My nursing agency also had an experienced trach and vent nurse available to meet us at home to help care for William, Her name is Tiffani- and we ended up LOVING Tiffani and asked her to be our full time nurse and it worked out that she was able to be our full time nurse! So she is with us Mon-Fri from 8-4 and she is more than great with our little Man William, and William LOVES her. We have not found a qualified nurse for the weekends, but I am hoping to convincee my nursing agency to let me use Tiffani on the weekends :)
On August 29, Williams vent battery died when Tiffani and I were trying to get it plugged in- and William was doing great off the vent and breathing on his own. He was like a happy little jumping bean so happy to get off the vent. SO on the next day, I took him off the vent at 10am, and he was breathing on his own, saturating beautifully and in the happiest mood ever! So I left him off the vent until 4pm! The next day he was off from 8am-5pm. Then from September 2nd on- he has only been ON the vent three different nights! MEANING he has been OFF his vent and doing GREAT!!!
Now for Isabell! She started Kindergarten and is loving her teacher, friends and classroom. She gets ST, OT and PT at school and is a great participant I hear. She loves to ride the bus and she is doing so well. Always the happiest thing ever, and I just love her. She has gotten a cold twice since school has started- I just cant seem to keep her from catching the damn things. You would never guess that she had cardiac surgery in April. I have her in a tumbling class at Swim Kids USA and she loves that. It is great for her lack of strength, stamina and coordination from her special delays. We were having a gal come out to our house 3x a week for private swimming lessons until Isabell got a nasty Swimmers Ear Infection and we had to stop the lessons :(
Richie is back in California for work, and we miss him so much! He is working bear Yosemite National Park. My goal is to get a plan together, and take a trip with Isabell and William out to California to stay with Richie. I hope we can make that happen!
I will try and keep up with my blogging and update again soon! :)
