7:15am: Where do I start. After a long night, Gavin is now resting in front of his beloved "Little Einsteins" from home - the one thing that is keeping him calm. Neither of us slept much last night.
Last night was very rough. Gavin struggled with the BiPAP in several different ways. At times he would become agitated (probably in pain) and would grab at it or knock it off while trying to move. This would require the nurse or the respiratory therapist to put the mask back on his face tightly - which caused him to thrash and "rage against the machine," so to speak. Then there was me - standing over him helping to hold him down and continuously reminding anyone and everyone to "WATCH HIS EYE!" and wincing as their hands and the mask and the strap and the gauze and the tape all got dangerously close to his open, fragile eye.
Then there were the times that his oxygen sats would decrease even though he was ON the BiPAP.
This would require the nurse or respiratory therapist to suction him. A catch 22, for sure, as the suction is necessary but also likely irritates the already swollen airway that we're trying to heal. They would suction his mouth and throat and down each nostril. The one nostril has the breathing tube in it - a Nasopharyngeal airway - so they suction through that which is uncomfortable for him, to say the least. Hearing the moans and weak, high pitched cries of my usually stoic son was too much for me. But I wasn't going anywhere. Gavin is so strong - it took three of us to hold him down as they suctioned him...which happened four times overnight. The unfortunate part about suctioning is seeing how dependent he is on the BiPAP still. When they would remove the BiPAP, Gavin's sats would drop into the low 80's, requiring them to use an Ambu bag like the one below to help him breathe by pushing air into his airway.
Twice last night he needed breakthrough Morphine which they give him in a very small dose. And for most of the night I laid in bed next to him as he gripped my hand. I found if my head was touching his and I softly sang a lot it would help keep him calm. It would also be easy for me to know if the mask was slipping off as I'd feel the whoosh of air on my face. Did I mention that the two of us had a long night? But I do have to say - we're a great team.
I'm waiting for the doctors to come around for morning rounds to find out the "game plan" for the day. I'll update this entry after they leave.
Please pray for our son. He is really struggling.
10:00am: About ten intensive care doctors, residents and nurses congregated outside of Gavin's room moments ago to discuss his status...concerns...and relay their treatment goals.
His situation was described as "tenuous" and they have no clear idea when he will go home. We could easily be here for days. The hope is to slowly and successfully peel away one thing at a time in terms of breathing support. Gavin currently has three things helping him. The BiPAP, the nasal trumpet (or nasopharyngeal tube) and the soft neck collar which keeps him in a good position to be sure his airway remains open. The first thing they will try to remove is the nasal trumpet in his nose. It's a long, soft rubber tube and it's pretty invasive. It also has the highest infection risk of the three. So next time he wakes up, they will pull it out.
Yes - I said next time he wakes up. Gavin is finally sleeping and has been for the last hour. This is the biggest solid chunk of sound sleep he's had. I've been guarding the door like a Mama Bear - and silencing every alarm on his machines as soon as they start. This child NEEDS SLEEP. Before he passed out, he had another traumatizing visit from the respiratory therapist who deep suctioned him really well. I think he did the best job of anyone yet - as far as how much he got out and how quick he was doing it. But still, in the end, Gavin was upset, crying, shaking, moaning and pleading with me with his eyes after it was over. After some pain medication, he fell asleep with me "pseudo" holding him. As much as I want, I can't get him out of bed just yet with the BiPAP - it would be too hard to keep on. So I scooped my hands under his back and his bum and put us cheek to cheek until his breathing was slow and rhythmic and I knew he was asleep. Anyone walking in the room would have seen me on all fours straddled half on a bed and part on a chair. It would have provided their laugh for the day; but, alas my audience never showed.
There's always next time.
11:ooam: Ed arrived!! Yippee! Gavin tried to locate his voice with his eyes when he heard him in the room - like he was frantic to see his Daddy's happy face.
11:01am: I ran down the hall to the bathroom. Frantically.
11:15: I had arranged for a special visitor to come to the room. DuPont has a "Healing Touch" program that was started by a nurse named Walle Adams-Gerdts. I think her services are probably under-utilized as most people don't understand this type of work. She is very similar to our Dr. Trish! Shockingly, it is a free service she offers to patients in the hospital! Ed and I really enjoyed meeting with her and know that Gavin will benefit from her beautiful gift.
She worked on trying to reduce his swelling, his inflammation and his pain. Gavin was still asleep when she came which was perfect. His body was open and cooperative to her healing hands. It was very peaceful in the darkened room - just the four of us.
Gavin ended up sleeping until close to 1pm - over a three hour nap which his body so desperately needed. Just as his eyes were opening I rushed to the nurse to request his pain meds. I wanted to be sure he had them before everyone who was waiting to fiddle with him pounced on our room. We had a nice visit before all the commotion started - our friend Elayne came by with books and chocolate snacks for Gavin and me! She works just around the corner. It was nice to chat with a friend, that's for sure.
Then it was time. Around 2pm, Gavin needed to be suctioned and to have the nasopharyngeal tube removed. I was happy Ed was there to help hold him down - Gavin can be very strong when he wants to get away from something or someone. The tube came out very easily - Gavin barely noticed. Well, that's not entirely true - but it was the least traumatic thing at that moment. The suction process was the most traumatic and Gavin was quite upset when it was over. I decided then that I HAD to hold him. I couldn't take one more look from him that screamed - PLEASE, MOMMY! PICK ME UP!
The respiratory therapist helped me tremendously to accomplish this - getting all of Gavin's tubes and wires and IV all organized and ready before I picked him up. He had been laying on his back this whole time - I just felt his body needed a new position and a great stretch. It felt so good to have him in my arms...good for both of us.
Once he calmed himself and settled into a breathing rhythm, he almost fell asleep. But soon I started seeing desaturations in his oxygen level and I knew it was time to get back into bed. In the meantime, his wonderful Daddy fixed up his bed with fresh linen and a new pillowcase while the nurse and I put Gavin in new pajamas.
3:00pm: I am down in the cafeteria eating a late lunch and taking a mental break while Gavin and Ed watch a movie in bed. Ed will be home in time to have dinner with Brian, some much needed playtime together (for both of them, I'm sure) and bedtime books.
Brian is doing great and is enjoying the individual attention at home. I miss him a lot, though, and can't wait to see my boys back together again.