Aliyah - Surgery update #5

We arrived home exhausted but happy on Sunday evening.  Aliyah's pain was well-managed by just scheduled Tylenol and Ibuprofen before we left the hospital.  At the recommendation of the doctors, I gave her oxycodone during our travel time to help her tolerate all the movement and weather changes.  She cried and arched quite a bit during the first two-thirds of our trip, unhappy in both the car seat and my arms.  The airline kindly gave us a seat with extra legroom, directly behind first class.  I hope the poor guy sitting in front of us didn't pay out-of-pocket for his first-class seat, because he was either getting crying or Barney in his ear during the whole 2 1/4 hour flight.  Personally, I thought the latter was preferable, but would have given him the option had he complained. :-) During the last flight, Aliyah was very calm and content.  She has not cried or fussed since that first plane flight yesterday.  She is so happy to be home!  I saw her biggest smiles yet when I went into her room this morning.  She really missed the rest of the family and the general hub-bub at our house.  Aliyah gets her meds at 10:00, 1:00, 4:00, and 7:00 AM and PM around the clock.  I'm pretty worn out, but should only need to keep up with this regimen for the next few days.  For those of you who live in North Carolina, Aliyah and I brought back some snow for you.  Your welcome!  Thank you dear friends and family for all your thoughts, prayers, and encouragement during this time.  I thank God for you.  You all are precious to me!

Aliyah - Surgery update #4

We're staying at the hospital tonight, as well.  Tomorrow, we should be discharged around noon.  A shuttle will pick us up and take us straight to the airport.  Good news!  I've received a few nice smiles this afternoon and so did the therapy dog who came to visit..  :-)  Her pain is being managed reasonably well...just sporadic complaining and agitation, but not out-of-control pain. I'm hopeful that we're over the hump.  Her oxygen stats drop into the 80's every now and then for no apparent reason.  She hasn't received oxycodone for 8 1/2 hours, just the alternating Tylenol and Ibuprofen every 3 hours.  It may be due to her inflamed airway, not sure.  We give her oxygen during these times and it brings her numbers back into the high 90's pretty quickly.  We will be discharged with Tylenol, Ibuprofen, and oxycodone (as needed).  I feel pretty apprehensive about the trip home.  I'm going to put her in her wheelchair in the morning and see how she handles sitting up and being strolled around.  We thank you for your continued prayers.

Aliyah - Surgery Update #3

Aliyah slept well last night until 2:30am.  Achieving good pain management for her is the main focus right now.  She can have oxycodone every 4 hours, but the nurses are waiting until she shows signs of  needing it before administering it, and then there is a 30 minute wait for it to fully kick-in.  The problem is that narcotics can cause respiratory depression, and Aliyah is showing signs of that.  It's a delicate balance.  Twice last night, she was able to go an additional hour before needing a dose.  But from 2:30am on, she really struggled.  I slept in her bed with my arms around her to try to comfort her the best I could.  This morning, her pain was completely out of control after only an additional 25 minutes beyond that 4 hour mark.  I just spoke with the physician team.  They are going to put her on a regular schedule of both Tylenol and Ibuprofen, then try to pull back on the oxycodone and see how that goes.  The goal before discharge is good pain management and toleration of her regular feeds.  I don't know yet whether we will be discharged late today or tomorrow morning.  I'm in no hurry!  However, our plane is scheduled to leave at 2:10pm tomorrow afternoon.

Aliyah - Surgery Update #2

Aliyah had to have the bladder scan done, but it didn't seem to bother her.  Her bladder was not overly-full, so they gave her more time to go on her own.  She did!  No cath needed now.  She was able to hold down 2 ounces of her food given over a period of 2 hours via her g-tube.  They would like to see her more hydrated, so they have her back on Pedialyte again.  Aliyah's pain is currently being managed with oxycodone and Tylenol.  We were able to remove the IV line from Aliyah's neck.    It was a pretty large catheter which made a pretty large hole.  The nurse held pressure until the bleeding stopped and then put a band-aid on it.  The nurse left and Aliyah started fussing like she wanted me to hold her.  I started to pick her up and all of sudden I see blood running down her chest getting on my hands and wrists and dripping all over the bed and pillow.  It was oozing from the vein in her neck!  Not knowing what else to do, I put pressure on the spot with my finger and started searching frantically for the Nurse Call button.  In desperation, I started yelling for help, but no one could here me through the heavy door.  I finally found the "Call" button and within seconds the nurse came rushing in to find Aliyah screaming, Mom frantic, and blood all over.  Another RN came in to assist and between the 3 of us, we got it under control.  I'm tired and Aliyah is now sleeping once again.  I'm hoping for an uneventful night.

Aliyah - Surgery update #1

Aliyah’s surgery went well today. They finished much earlier than expected! They took her back to the OR, all smiles, at 7:30am. She liked the moving bed and all the people talking sweetly to her. The doctor came and debriefed me post-surgery. The anesthesiologist did have difficulty getting an IV line started. Thankfully, they put her out with gas before starting the poking and digging. She has multiple needle marks on her hands, arms, wrists, and feet. They finally used the jugular vein in her neck…last resort. Ouch! Only 3 small incisions were necessary for the laparascopic surgery. It went smoothly and successfully. One of the attending surgeons cleaned up her g-tube opening and replaced her Mic-key button while still under. I didn’t know there was a problem with it, but am glad he seized the opportunity to take care of it. Recovery was quite difficult. Her breathing didn’t come easily enough once extubated, so they put a nasal breathing tube in to help open her airway while coming off the anesthesia. I did not see the tube while still in, but I saw it laying there covered in blood after I was called back. Poor baby! :-( It took quite a bit of narcotics to get her pain under control. The involuntary movements that she has from cerebral palsy were NOT helpful. Barney the dinosaur was a good distraction once the meds were in. We were admitted to a room around noon. These rooms are amazingly spacious…about 4 times the size of our rooms at Duke. As I am writing this, there are large, beautiful snowflakes falling softly outside of her floor-to-ceiling glass window. Peaceful. It’s blanketing the whimsical playground below. Aliyah is now sleeping restfully, but when we first arrived in her room, the transition to her bed was bad news! The pain was so bad that she could hardly catch her breath. Her stridor and spasmodic coughing could be heard all the way down the hall. After a few consultations, a couple doses of morphine, and a nebulizer treatment of epinephrine, she was finally able to calm down and fall asleep in my arms. I dared not move a muscle. While holding her, I noticed an odd bulge at the base of her neck below the IV line. Not good! Fluid was pooling in her tissues, so that line is done. Now, we only have medication access through her g-tube. It takes double the amount of time to kick-in using that route. Please pray that we can stay on top of her pain management so she doesn’t have to get another IV line started. I have no idea where they would place it anyway and the pain it would cause her…I can’t think about that. I can’t bear to watch her suffer. After an hour of rest in my arms, we relocated her to her bed where she slept for a couple hours. Since she no longer has an IV drip, she is getting Pedialyte dripped through her g-tube. She is kind of in and out of awareness and sleep right now. Nobody dares move her. Barney is coming to the rescue again as a good distraction. Don’t be too hard on that big purple dinosaur; he has his good points. :-) Aliyah needs to urinate in the next 2 ½ hours or they will do a bladder scan and if full, will catheterize her. We do not want this. It will aggravate her abdomen terribly. Please pray that she pees soon! Thanks!

Aliyah - Upcoming Surgery

Please pray for Aliyah who will be having a planned surgery out-of-state at 7:30am (CST) on Friday, January 24th. Aliyah has had 2 long-lasting colds back-to-back, which cause a lot of mucus-management, breathing, and sleeping issues for her. She is still dealing with a significant amount of upper airway and throat congestion. She had a fever on December 31st and January 1st, but has been fever-free since then. The surgeon, whom we saw at a preliminary pre-op appointment last Wednesday, at a local hospital, felt the main risk for her was anesthesia. At his recommendation, Aliyah was assessed by an anesthesiologist that same day, who expressed that he would go ahead and do surgery if Aliyah was his patient, as long as her white blood cell count and chest X-Ray came back clear. These tests did come back clear, so we are still planning on flying out Tuesday morning. We do feel that she is improving...slowly. Her noisy breathing/stridor is a bit disconcerting. Again, the main risk is anesthesia. Being intubated could irritate her airway so much that she would have to remain intubated for awhile post-surgery. This means being on a ventilator. We DO NOT want this to happen! Please pray for a full recovery prior to surgery. Aliyah and I fly to Minnesota on January 21st and hope to return on January 26th. Randy will be taking time off work during our absence, with my mom as back-up. Also, please pray for Wenyan's emotional health while we're gone, as she has never been separated from me for more than a few hours since she joined our family at the end of July.