Day 1 - Tuesday 03/19/2013
Haven has open-heart surgery to repair VSD. Completely successful. Haven was very slow to awaken from the anesthesia and was groggy all evening.
Haven has open-heart surgery to repair VSD. Completely successful. Haven was very slow to awaken from the anesthesia and was groggy all evening.
Day 2 - Wednesday 03/20/13
Haven Had a rough night and slept all day and during brief times when awake, she was very agitated, anxious, and crying loudly--Inconsolable.
Day 3 - Thursday 03/21/13
Haven's day was similar to Wednesday. She slept Most of the day and had everyone scratching their heads wondering why she would not wake up.
Day 4 - Friday 03/22/13
In the morning, Haven suddenly "shutdown" and became very unresponsive to any kind of stimuli. She continued to be clinically unremarkable, all tests were acceptable, and so the team of doctors in consultation with mother felt that she needed to go home and rest and sleep it off. She was discharged around 4:30 p.m. Around 9:00 that evening, she had what appeared to be a seizure. Sarah and the other kids witnessed this event. We took Haven back to Akron Children's where she was seen in the ER and then admitted back to the PICU. Some of the hospital staff were able to observe seizure like activity as well. CT showed no brain injury or trauma. We spent the weekend waiting and watching to see her "snap out of it." Since all of her vital signs remained perfectly normal all week, we all felt that her strange behavior was nothing more than the effects of medications and of being in a strange environment.
Day 5 - Saturday 03/23/13
Haven continued to be unresponsive and very sleepy through most of the day. The neurologist began a 48 hour EEG test In the afternoon. He was monitoring the test from home when he was not at the hospital. He called in to let us know that there had been no seizure activity on Saturday.
Day 6 - Palm Sunday 03/24/2013
Haven had a decent overnight only awakened about four times crying but usually consoled and back to sleep. During the day, her siblings came to visit her. She was awake most of the day, and was more responsive to stimuli. She would move her eyes to look around the room and out the window, took a few sips of water, and said several words solicited and unsolicited throughout the day.
We met with the team of doctors on Sunday morning and they shared their mutual frustration about not understanding exactly what's going on with Haven. It was decided to do an MRI on Monday, to rule out further neurological concerns. One doctor expressed his editorial remarks that we probably will not find a cause of the seizures nor a cause of the inability to awaken completely and be back to "normal", but at least we could rule out other issues.
Day 7 - Monday 03/25/2013
Haven had an MRI at 1:00 p.m. At 3:00 p.m. we received the shocking news that she had had a “global” stroke during her heart surgery on the previous Tuesday. This diagnosis explains her anxiety and agitation mixed with involuntary body movements and poor response to stimuli since the surgery. The doctors have been baffled since the surgery and were shocked as well by the diagnosis. (On a positive note, her little heart is now perfectly functioning and sounds beautiful!) Haven's surgeons said they have never had one of their patients have a stroke following a VSD repair. They told us, "It just doesn't happen."
We don't understand why this has happened to our daughter/family, but we rest in the hands of an awesome, sovereign God who does not make mistakes! We are determined that some good will come of this and have had the blessing of sharing our faith with doctors, nurses, chaplains, social workers, friends, coworkers, family, etc. Although we are grieving the loss of the daughter we knew, we know that Haven's life is in the hands of a mighty God who can make the lame walk, heal the deaf and blind, and raise people from the dead. We know that HE holds our daughter's life in his hands and we find peace and comfort in that knowledge.
Where do we go from here? We don't know exactly, but God does. On Tuesday Haven will be evaluated by a swallow study and occupational, physical, and speech therapists to begin to devise a plan of intervention to help her gain back as much function as possible. It will not be easy. We do not know what the next 12 months will hold, but we do know that we can face this challenge through God's strength. So we press on.
Day 8 - Tuesday 03/26/13
Both Aaron and Sarah stayed overnight at the hospital. Sarah’s mom brought the other kids up to Akron around 12:30 so we could tell them the “bad news”. We cried together and allowed them to ask any questions they had. We reassured them that we would stick together through this--the Walker Family Team doesn’t back down from a challenge! Brenna quoted Romans 8:28 before Aaron had a chance to read it. We’re so proud of our oldest--she is such a leader.
Haven had a swallow study done and an initial PT and OT evaluation. She needs liquids thickened. She ate dinner. The shock of the situation continued to feel like a kick in the gut. Are we sad about what has happened? Of course! Are we scared? Definitely! Are we mad? Initially we did go through that stage, but we rest in the hands of an awesome, sovereign God who does not make mistakes! We look forward to sharing more news of God's goodness toward us. "And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose." -Romans 8:28
Day 8 - Wednesday 03/27/13
Haven ate lunch, not dinner. Depressing day. Aaron stayed overnight. Lots of doctor visits and other various distractions throughout the day.
Day 9 - Thursday 03-28-13
Haven has been seriously disabled by this stroke. We have seen only small amounts of improvement since the surgery. She continues to lose functions like talking, moving her legs, and now eating. We were compelled to permit the doctors to give her a feeding tube today in the hope that once she receives nourishment she will be able to begin the healing process. We have been told to expect her to stay in the hospital for 4-8 weeks once she is stable for intensive therapy. Haven was very low today. feeding tube (size 6) failed to work. removed.
Haven has been seriously disabled by this stroke. We have seen only small amounts of improvement since the surgery. She continues to lose functions like talking, moving her legs, and now eating. We were compelled to permit the doctors to give her a feeding tube today in the hope that once she receives nourishment she will be able to begin the healing process. We have been told to expect her to stay in the hospital for 4-8 weeks once she is stable for intensive therapy. Haven was very low today. feeding tube (size 6) failed to work. removed.
Day 10 - Friday 03/29/13
Sarah stayed overnight. Fussy day, irritable. Haven slept about an hour and a half in Sarah's arms in the afternoon. Feeding tube (size 8) inserted and working. Haven fussy, gas. Maybe uncomfortable due to digestion restarting. Aaron and Brenna went to Prayer Breakfast with youth group at Perkins at 8:30, decent turnout, good conversation. OT therapy. Haven responded well, laughing and smiling. Sarah took the other four kids to Good Friday evening church service. Family friend Jeff came up to visit with Aaron from 8 to 10 PM. Aaron stayed overnight.
Day 11 - Saturday 03/30/13
Haven had a rough night. She only slept a total of 2 to 3 hours throughout the night. She was given Tylenol, clonidine, food was stopped to reevaluate If it is causing her problems.
Dr. B. stopped in and reassured Aaron that the agitation is just temporary and should go away with a little bit more time.
Dr. V. also stopped in to check on Haven he was impressed that she followed him around the room even moving her head. He was also impressed that she is watching TV and paying attention to things and being interested in things he says those behaviors are really good signs. He will talk to Dr. P. and the cardiologists about getting her some new medications to call her down and help her sleep it calms the brain and does some other things to really help her get a good nights sleep. Hopefully that can begin tonight.
Joel and Chris visited in the afternoon and cried with us.
Day 12 - Easter Sunday 03/31/13
HE IS RISEN!
Another frustrating night of no sleep! Haven sleeps about four hours off and on. Aaron took the other kids to church. It was great to be back with our church family for the most important Lord’s day celebration of the year!
Another frustrating night of no sleep! Haven sleeps about four hours off and on. Aaron took the other kids to church. It was great to be back with our church family for the most important Lord’s day celebration of the year!
Sherri made Easter dinner and brought it to the hospital. We ate in shifts in the PICU waiting room, not much talking--just quick eating.
Day 13 - Monday 04/01/13
Haven continued to be very fussy all night. The feeding tube causes great agitation for her. OT Therapy in the morning went well. Haven was able to move in small ways. These were some small baby steps at the beginning of a long journey.
Day 14 - Tuesday 04/02/13
Haven slept better--several times she slept 30-45 minutes at a time. OT , PT, and Speech Therapy today. Haven is very tired! Finally took an hour long nap in the afternoon. It has been two weeks since her heart surgery and her heart has been perfect! We thank God for the team of skilled and dedicated cardiologists who have dedicated their lives to treating children with heart illnesses. Please pray that the doctors and support staff would be encouraged in their work.
Haven ate four ounces of applesauce for a late bedtime snack!
Day 15 - Wednesday 04/03/13
Haven had a much better night of sleep. She slept from about 1:00 a.m. through 8:30 a.m. She ate applesauce again this morning for breakfast! This was the first full day of scheduled therapy. Haven did very well. She even took some “baby steps”! She ate lunch and dinner today! This is great news as it means we are one step closer to getting the feeding tube removed so she can rest more comfortably at night. Aaron brought the other kids to the hospital and we ate cafeteria food in the small and private “family lounge” on Haven’s floor. It was very nice! Haven is a tired girl and is ready for bed!
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