Over to Foothill and through the cold to Primary Children’s we go. The van knows the way and carries my babe for another anesthesia day.
Yes, we are back. We are becoming wonderful clients for PCMC.
Today we are going to get an MRI (Magnetic Resonance Imaging). That is just a fancy x-ray with less radiation. The ENT would like some pictures of the brain and the throat to see what the next step should be to help the severe sleep apnea.
Details: (you can skip to the summary if you want)
On October 19th, 2010 Robbie had Tonsillectomy and Adenoidectomy. This improved his sleep quite a bit, but the doctor is not quite satisfied with the result. Prior to the T and A Robbie would stop breathing every 2 minutes, now it is every three minutes. So there is improvement (yeah) but more needs to be done.
Schedule:
2:20AM wake and nurse Robbie
5:55 Wake and get ready for my daughter’s violin lesson
6:40 Violin Lesson
7:00 Grandma and Grandpa arrive (thanks so much!) Josh takes Robbie to PCMC
7:15 Violin Lesson finishes
7:30 Arrive home, grab a bite to eat and head out to PCMC
7:50 Arrive at PCMC and meet Josh in the same day surgery waiting room
8:30 Nurse checks vital signs, we meet with the Anesthesiologist
9:15 Heard the word that there is a “mix-up" in the MRI room and there will be an additional hour wait. (Good thing hi is such a patient baby.)
10:00 Pick up a doughnut, muffin, and apple juice at the snack cart
10:25 Our Anesthesiologist takes us to floor 1 and prepares for the mask
10:30 I introduce the mask to Robbie. It has a strawberry scent. I lay Robbie down, the mask is put on his face. At first he feels a little scared so I stroke his tummy to let him feel calm. My heart goes out to him. Sometimes I wish I could just take it all away. That he wouldn’t have to have all of these “procedures”. That he could just be himself without all the doctors and shots and masks and test results, but then I remind myself that it is through all of this that his life will be improved as a whole.
Robbie falls asleep. “All right, Mom." The anesthesiologist says, "Now is the time to give him a kiss and say goodbye.” “Oh", I thought in a bit of sadness. I kissed his little chest, since his face had a mask. His skin was warm. I said a prayer in my heart. This prayer was not with words. It is the kind of prayer that is with energy, the energy of my heart. – a prayer of plea, for my baby’s life and being - a prayer of thanks - that there is greater good, much greater than myself - that there is a greater purpose that exceeds my understanding, that there is greater love, a love so pure and so real, that no earthly thing could diminish.
I look back to see my son, asleep on the hospital bed. I walked out of the room trying to leave my worries behind, and also breathing a sigh of relief that I have done all that I can do. Now I must put my faith in the doctors’ hands, that Robbie will be safe and that the pictures will give us information that will make this experience worthwhile.
11:00 Josh and I headed for brunch. I went in to check out the menu and ran into a friend from school. She was holding her little baby. I noticed the feeding tube immediately and images of those times flashed before me.
11:05 Robbie is finished
He was crying when I walked in to see him, but when I picked him up he snuggled into me and felt safe again. I am glad to be to this point.
Progress is being made:After being on oxygen almost all of his life Robbie now gets to be off oxygen during the day!!!!!!!!!! It is the most wonderful thing to be able to carry your baby without being hooked to a gigantic green metal thing on the other end of the tube. Every time I pick him up I rejoice in not having to untangle the tube and not having to fix the nasal canula (sp?) every two minutes. The other great news is that his cheeks are now healing. I love to look into his face and see him without tubes. His blue eyes sparkle back at mine as if to say, “Yeah! No canula, Mom.”
We have now transitioned to the C-PAP (Continuous Positive Air Pressure). It is quite an interesting blue contraption, that Robbie gets to wear at night, but it does help him sleep better. It just looks like we are preparing our 13 month old for scuba diving each night. He has been quite tolerant of the whole thing, more tolerant than I ever expected. It doesn’t mean he likes the mask, but he seems to trust us enough to be okay with it.
SUMMARY:• Today Robbie gets an MRI to take pictures of the brain and throat for sleep apnea purposes
• No more oxygen during the day
• C-PAP now at night
• Working on getting to hands and knees
• Says “Dadda” all the time, and comes up with some great sound effects with the tongue that keep us laughing at the dinner table.
• Dances to music and has become a regular attendee for all of the kids’ practicing
• Currently still nurses, but is doing well with solids, no more tongue thrust
• He is a joy. Not a day goes by that he doesn’t make someone laugh or smile
