Joshua's Journeys #10 Just Breathe

It is so hard to believe that we are approaching so many anniversaries of Joshua's life. And sadly, it is unbearable and so hard to believe that this month we will be approaching 6 months from his passing. It feels like it was just yesterday, and in some respects it seems so long ago that I held my baby.

As we come to different milestones in Joshua's life we wanted to take the time to remember his surgeries (even the frustrations that went along with them), the unique care we were able to provide him, and of course all of the love and fun times we shared.

In the last Joshua's Journey we talked about how Joshua had an emergency baptism because he was going to have a trach and g-tube placed. It was important for us to have both surgeries done at the same time in order to limit his anesthesia exposure since he was so tiny, and we knew he had more surgeries ahead.

Joshua was born 7/3/08 and from that day until 7/15/08 he was on a c-pap (Continued Positive Air Pressure) to help him with his breathing. He seemed to be progressing well and was placed on a nasal cannula from 7/15-7/25. Joshua continued to have oxygen desaturations and was eventually demoted back to the c-pap 7/25 until 8/7/08. On 8/7/08 it was determined that Joshua needed to be put on a ventilator. Joshua had trachealmalasia, a floppy airway so to speak where he would stop breathing and desat every now and again. He needed something to keep his airway opened, which the ventilator did, but that would not be a long term solution. It was determined that Joshua would have a tracheostomy. To jump ahead a little bit, Josh had also been ng tube fed (nasogastrically- nose to stomach). As a matter of fact, Joey was also ng tube fed for the first few days of life. They both received 100% breastmilk, just a different route than the average term baby. Joey was able to start bottle feeding after a few days, however Josh was going to need some help for a while. Instead of the discomfort of the ng tube Josh was going to receive a g-tube so the milk could go directly into his belly. It was decided that both the gastrostomy-tube and tracheostomy could be done together. We were planning on this all happening on Monday 8/11. This was why the baptism became an emergency for us.

So, Phil (taking off of work once again), Joey, and I headed to the hospital. Joey was greeted by many nurses since it had only been a few weeks since he'd been home they were all over him. Bethany had set up a room for us in Peds with a crib for Joey, a card welcoming him back, and all the fixings he could need. Tina came in on her day off to make sure she was there for Josh on his day of surgery. Josh had the best of the best when it came to primary nurses. He had the ones that cared and loved him as if he was their own.

We signed the papers, Phil took his time with Josh while I watched Joey, and then we switched so I could watch Josh go into dream land and be taken away. When I went back to hold Josh before the surgery the look on Tina's face said something was very wrong. Without many words she shook her head and said "Its not happening." Apparently there was some confusion going on where the anesthesiologists were not comfortable with Josh because of his heart conditions. Dr. Kumar, one of the best cardiologists came up and spoke to the doctors and anesthesiologists saying she thought he would be fine with the surgeries and anesthesia. Many conferences and hours passed. The anticipation of the day and the stress behind it was elevated beyond belief. The procedures were supposed to have started at 9am, now being 3pm Dr. Morganstein, the ENT who was to do Josh's tracheostomy came in. He was just as disappointed as we were and was going to work on trying to do his surgery that day even if the other did not happen. Dr. Geisler the gastric doctor came in and after hours, and days of anxiety Phil hit his limit. Phil swore and told the doctor his disappointment with him. The director of the NICU followed in to apologize. Neither surgery would be happening that day. It was apparent that the NICU was embarrassed for this oversight, but it still did not make things right. The anesthesiologist that was on was not comfortable having Josh under their care, even with all the other doctors' approval. It was the beginning of many frustrating, enraging, adrenaline filled days. From this point on Phil decided to call doctors by their first names. They should not be put on pedestals but kept at our human level. Yes everyone makes mistakes, doctors included, so everyone should be treated with the same respect. The only positive of this day was that we were able to sneak Joey into the NICU to see his brother. Joey went home after 2 weeks (7/21/08 to be exact), and once out of the NICU a baby can't return even if its for a sibling. But, under the ridiculous circumstances of the day the best nurses were able to help us get Joey in for a few minutes of much needed brother time. Thank goodness Jeff and the other docs didn't find out!

Without moving ahead at this point, Josh was to remain on the ventilator until his trach surgery could be rescheduled. Josh was on a ventilator from from 8/7/08 until 9/10/08 when he finally had his tracheostomy. Next week we will talk about his trach surgery and what we had to learn in order to care for him.