• Alicia Assad on CaringBridge

Doctors vs Mothers and Nurses

The doctors here, God Bless them, are nothing short of amazing. They are skilled and knowledgeable and without a doubt, good at what they do. We have a team of three doctors working with us...and each of them have good bedside manner, attentive listening ears and are responsive to any questions we have whenever we have them. However....they do what they need to on the surgical end and then go about their next case while we are left to manage the aftermath with the care of the nurses. This is how it all works...I get that...but now I am going on three weeks of tolerating it.

Since William has grafts on his chest, left shoulder, right bicep and fore arm, mobility in his upper body is restricted. He can use his left arm from the elbow down and is able to reach just enough to get a munchkin in his mouth or hold a drink. His right arm is in a cast to keep it in the L shape position and is wrapped all the way down to his fingers so while he can't bend this arm or move his hand, he can raise it up and down. There is a patch on his neck that was deep but not grafted so he doesn't have much side to side mobility. This is pretty much what he has been managing with for the past two and a half weeks...only now, hopefully the skin underneath the bandages is finally healing.

Couple this with a brand new wound on his poor little butt where they grafted. Skin was taken from his entire right cheek and most of the left....at a superficial thickness...but just enough so it feels like he was burned there too. The way this heals is by drying and scabbing so doctor's orders for yesterday was that the dressings on those were to come off and it was to air dry. Yes, this is very painful. Typically this means kids lay on their stomachs but given William's grafts this position isn't possible.

Dilemma, right? Our day nurse, Pat, got us through the removal of the dressing on one side and at the doctor's suggestion that we use a blower to help speed up the drying, she replied, "I think we should skin your butt and then put a blower on it." Still, desperate to get this guy on the mend, we were willing to give it a try so Eddie held a blower to Williams's butt for as long as he could tolerate it. A few hours later, we exposed the second cheek and while he refused the blower (wouldn't you) he rolled over toward me far enough onto his right shoulder that he was able to air most of it. After over 8 hours in this position his face and arms started to swell so much that his eyes were closing and by the time the night nurse Rhonda was on, I was holding William in my lap with his tush hanging between my legs. This lasted about an hour and helped his swelling so Rhonda told the doctor we needed another solution and so they put some drying silver stuff on and then a diaper and he was finally able to lay somewhat on his back and we got a decent night's sleep.

Thank goodness for peaceful rest because the doctor's orders for today were that he get out of bed to walk around and play. He was resistant at first but eventually we got him to the playroom and before we knew it, he was slowly walking around, giving high fives and allowed Mom enough time off snuggle duty for a shower. He even requested his Thomas boots which paired amazingly with his hospital gown and diaper and with Eddie in his 90s wardrobe that he discovered yesterday at his parents during a quick shower break, I haven't decided who made more of a fashion statement.

Throughout this ordeal I have realized that while doctor's orders always have the best of intentions they aren't always the best at the moment. Sometimes it takes a little compromise and sometimes Mom really does know best. The last time we were here I was insisting most of his pain was from a catheter (that was done incorrectly twice, then put in a third time) so when something still seemed off after its removal I insisted that he was tested for a UTI and while they only did it to keep me quiet...shocker....he had one and the minute an antibiotic was started his pain subsided. For a week I was complaining about the seeping wounds and terrible smell and then a major dressing change is done 8 hours before a surgery when the pain could have been spared for the inevitable anesthesia in the OR. Really? And now you want me to let this kid's butt dry out naturally? Do you happen to have any suggestions for this given his chest wounds and lack of mobility?

Needless to say I wouldn't have remained as patient and collected without the nurses backing me up and really looking at what is best for more than just Williams's wounds to heal....they advocate for his comfort and spirit. This compassion and holistic approach to medicine is what has helped me through the many helpless moments where there is nothing I can do to comfort my child in pain but "snuggle" and tell him it will get better soon.

With this morning's activity and the nice nap he is now taking flat on his back (thanks to Rhonda's silver drying solution) I am hoping that these painful moments really are going away soon for William. He is certainly tolerating this all much better than I would if I were him. Such is the spirit of a child....and the reason I will fight even harder for his needs as his mother....