One year Trachiversary, and Life is GOOD!

One year ago at this time, our little fighter Wild Man Willie was inpatient at Phoenix Children's Hospital. It was a 35 day hospitalization we will never forget.

Last year Richie was working for MASS Electric on the LightRail in Los Angeles and had been away from home for a while. The project came to an end in May 2011. MASS had a short 10 day project June 2011doing some repairs on a train system that was in Canada- and Richie had an opportunity to go on the short job that paid well. All travel and meals were paid for by MASS. So Richie left for his adventure early June 7th I believe.

For several months William had been so fragile, and had several troubles with respiratory distress. We were on and off lung steroids, been in and out of PCH, using more oxygen via nasal canula that normal, and our suctioning needs had increased. On June 12, William had a really rough night the night before and my mom came over to keep Isabell while I took William into PCH ED. We were at a baseline rate of 0.4LPM of O2 at that time and William was needing 2LPM and really struggling to keep his oxygen saturation's up(struggling to breath). He had no fever, but looked miserable. When I took him into the ED, I explained that William wasn't himself and gave the staff the rundown. He was admitted for observation since he is so medically fragile, and since his oxygen requirements were so high. All labs were negative for infection, and hid blood work did show that his CO2 levels were elevated. We got settled into our room in the late evening of June 12. We had a good night, I was able to get some sleep. William needed 2LPM of O2 all night, and was otherwise stable. Sleepy, congested, but seemed comfortable. On the next day June 13, we were half awake for shift change at 7am. William was receiving respiratory treatments every 4 hours and the nurses were checking on him alot for desaturation episodes. At 10am William had a small desaturation episode. Our nurse the Adorable and Wonderful Lauren (On the Trach and Airway unit) came in to check on the Wild Man. He sounded congested, so Lauren attempted to deep suction William (through his nose) and William gagged and turned purple and blue. His oxygen saturation's had dropped to 30% and we cranked the oxygen as high as we could to a flow of 15LPM. William's saturation's did not come up very quickly, and Lauren was calling for HELP. The hospital has an intercom system, and the Clinical Assessment Team was called in to asses William. Within seconds a group of about 12 Physicians, Practitioners, Residents and nurses were in our room. William had recovered and was back to his 2LPm of oxygen (still higher than normal, but lower than 15LPM!) and the assessment team decided that he may be ok- but they would get a bed ready in the PICU incase of another episode. Within 30 minutes later, William did it again. He turned blue, and it was so hard watching my baby struggle to breath. He was such a fighter though. The assessment team said to bring William over to the PICU. We gathered all the stuff we needed, and RN Lauren, PCT Stephen, and and RT (drawing a blank, I don't remember which of our amazing RT's were with us) rushed from the old building of PCH, 4th floor- to the New building of PCH, 6th floor! What an adventure. The crib William was in was not in great condition, and the wheels didn't roll that well. It took all of Lauren and Stephen's might to push the crib down the mile long hallway of PCH that we had to rush down- while our RT was holding oxygen securly to William's face. I was running ahead with a wagon full of our belongings. William really wasn't doing well by that time, and we got into our PICU room in a total rush. We tried numerous interventions to stabilize William's breathing- and nothing was working except continuous albuterol, with  positive force pressure of Oxygen via mask at 20LPM. He was responding to the positive force pressure of oxygen and albuterol, and was saturating at 100%- but someone had to hold it securely to William's face, and keep the albuterol going. Which we couldn't do forever. After doing so for about an hour, the team pulled me aside for a QUICK gathering. We recognized that William was in FULL RESPIRATORY FAILURE, and all efforts being made weren't working 100% to our advantage. There was nothing else we could do to restore William's breathing at that point, OTHER than placing a n INTUBATION tube down William's throat- sedate him and use a ventilator for breathing support in hopes that his lungs will regain strength after they rest.

During the midst of all of this happening, I managed to get ahold of my mom and she was able to get to the hospital immediately. I was there all by myself, and my husband was in Canada. I had talked to him as well, and it was just extremely HARD to be apart at that time. In the position we were in, it was nearly impossible for Richie to return home at that moment that William went into Respiratory Failure. He was going to be back from the trip on June 17- and him being away was super torturous. I am so thankful my mom is so supportive, understanding, ALWAYS there, and just amazing. She was there holding my hand, kissing her grandson who was fighting for his life, and taking care of the world around me when I could not. All I was focusing on was my baby boy, and how I WAS NOT ready to say goodbye to him. He was fighting SO HARD, so I fought with him.......

When our medical team looked at me and said "What are your wishes?" I said "PLACE THE TUBE!" And they asked me if I was staying in the room, and I told them no that I am placing all my trust in them since William was an extremely DIFFICULT Intubation- and would be out in the waiting room with my mom. I knew they would have a difficult time intubating him, and I knew that they would be successful after a challenge. I don't think I could be there in the same room to watch the difficult challenge, watch my baby fight for his life, and watch the chaos of the Interventionist Nurse Practitioner RT's and RN's struggle at a successful intubation. Sure enough- It was such a difficult task after the NP had tried intubating William 2x, the interventionist tried 2x, and they had to call the on call anesthesiologist to come in and intubate in which he did so successfully on the second attempt. After 6 attempts at intubation- the Tube was Successfully placed!

The team came out in the waiting room to get me, and my mom so we could go back to our Wild Man Willie's bedside and be with him. He has been sedated already, and was getting some much needed rest. He was getting breathing support from a mechanical ventilator- and with all the medical 'stuff' all hooked up to him, he looked incredibly comfortable and peaceful. Made my heart slow down just a bit after going through all that, BUT I was still hurting that my little boy was fighting so hard.

William was intubated for 14 days. Richie returned home from Canada on June 17th, and came right to the hospital. Each day William was needing more and more sedation meds to keep him calm, comfortable and to keep him from pulling his ETT Tube out. William had a special test done that determined that his diaphrahms were not moving, and possibly paralyzed from going into respiratory failure. The team came to Richie and I to share that information, and we discussed that William's lungs may be paralyzed and taht we can continue to keep him sedated and on the hospital ventilator and see if he takes a turn and starts breathing OR we could explore the options of having a trach surgically placed into William's airway and give his breathing support through a home ventilator and take him home after he recovers. We made some quick decisions and chose to go with the trach placement. OUR ENT came in on a Saturday June 25th and placed William's trach. Surgery went quick and successful.

William came back from surgery- and we were able to see our little man AWAKE and he looked even more comfortable. We were immediately able to start weening William off of all the sedation meds he was on. He was more and more awake and looking so cute. The trach, vent, and circuit scared the crap out of Richie and I becasue we though we would never figure out how to manage all of that equipment! Within a day we were feeling comfortable with all of the stuff, and started holding William and handeling him with his new gear so we could get used to it! We had to stay in the PICU for one more week, until he had his first trach change. When having a trach- you have to change it to a new sterilized trach each week. The first trach William had was sutured into his skin- so our ENT had to come to the PICU for our first trach change to untie the sutures and place the new trach. He was also checking out the stoma, and evaluating William;s airway. After the trach change, our ENT gave us the go ahead and go to the stepdown unit to the Trach and Airway unit where we would learn to care for William with all his new gear and where William would continue to ween off of all the drugs he was on while being monitored 24/7. We were told we could expect another 30-45 days in the hospital for this process. We transferred out of the PICU on July 4, 2011.

We spent days following our transfer to the trach and airway unit "Nesting". Richie and I spent nearly every second in our little hospital room with William learning all we could learn about William's new trach, and vent. It takes alot of education to learn how to care and manage a trach and also the vent. William also had another Broviac central line IV placed, and we were keeping it for long term access which also meant we had to learn how to manage and care for the Broviac.

In 10 days, we had checked off on all the items on our list to learn before we take William home with all his new gear. When the staff said it takes most families 30-45 days to check off on all the things we had to learn to care for the trach and vent and we completed it in 10 we were so proud of ourselves. The Trach and Airway said we set a Unit record for sure, and they were so proud of Richie and I for being such proactive parents. Richie and I both were so eager to learn and perform all it took to care for William. From suctioning the trach, bagging William, changing the circuits, doing a trach change, flushing the broviac, administering IV meds, cleaning and organizing equipment- Richie and I were in to together.

On July 14, 2011 we learned all we needed to learn, and William discharged from the hospital. We took our Fighting Fighter Wild Man Willie HOME!

After being vent dependant for all of July at and most of August at home- William started breathing all by himself with no vent support, nor oxygen support on August 27th, 2011. To keep William;s CO2 levels down, we still used the vent at night until mid October 2011. By that time William was fighting the vent, and I stopped using the vent 100%. William only needed oxygen here and there.

Fast forward to now- and I am SO excited and proud of where we are. For our one year Trachiversary- where the care we provide for William has dramatically increased and our work is more intense, I can say we are BETTER off now that we have ever been. William has traveled all over Northern Arizona, he has been to New Mexico and loves car rides. We have been able to visit Daddy since he travels 100% of the time as a Journeyman Lineman. We have even taken William on an airplane to Texas and we have been here in Texas for nearly 6 weeks. I have William's respiratory needs so under control, and I am proud of my hard work to flawlessly care for William and all his intense medical needs. I am proud that my husband works just as hard- to provide EVERYTHING for us, and is the best dad, and most pro-active dad I know when it comes to taking part in the needs of his medically fragile child.