Wednesday night 11/9/16
First, thank you to everyone that has messaged and
called. I apologize for not responding
to all. It is difficult to communicate
with Matt, let alone everyone else.
There have been providers in our room all the time. It is difficult to catch a breath. Also, jet lag + hospital life = SO
TIRED!!!! With that said, here is what
is going on so far.
We have shared previously that Maelee has lower limb
paralysis. During our time together
(just over 2 weeks!), she did not have any bowel movements. Upon our return to the US we contacted our
pediatrician with our concern. She
directed us to the ER for evaluation of constipation. Since Maelee’s medical history is unknown, the
ER made the decision to admit Maelee to the hospital late Monday night. We have been in investigation mode ever
since.
In addition to figuring out her constipation issues, the
team is investigating her paralysis and bladder. Many tests have been ordered and specialists
consulted. The major test that would
provide many answers is a MRI of her brain and spine. During a very frustrating trip down to the
MRI unit, it was determined that x-rays would be required prior to the
MRI. The x-rays needed to rule out any
potential metal in Maelee’s body since metal is not allowed in a MRI machine. She does not have any surgical incisions, so
there was no major concern. To our
surprise, Maelee has an implant in her heart.
The conclusion is that she had heart surgery as an infant. Since there are no surgical records, we do
not know if the implant is metal.
Therefore, a MRI cannot be performed at this time. This is very disappointing because it is the
best tool to assess her brain and spine.
This news came late Wednesday afternoon, so we are waiting to hear the
new plan from the neurosurgery team. We
also requested that cardiology be involved to assess her heart.
Maelee has a very severe bladder infection. It is believed that she is unable to fully
empty her bladder due to her paralysis.
She has bacteria that are resistant to most antibiotics. The infectious disease team has found one
antibiotic that may kill this type of bacteria.
The new antibiotic was started Wednesday afternoon. In addition, urology was consulted to discuss
bladder management. There will be
testing tomorrow to test Maelee’s kidneys and bladder function in addition to
assessing any damage.
Maelee continues to eat and drink very little. Speech and dietary have been consulted to aid
with these issues. Also, physical
therapy has been consulted to work on her core strength and maintain muscle
flexibility.
One of Maelee’s x-rays suggests that she has hip
dysplasia. Additional imaging was done
today and we are waiting to see orthopedics to discuss this issue. It is likely that it will be a minimal issue for
her because she does not bear any weight.
I may be forgetting something right now, but as you can see,
there is a lot going on. Please pray for
wisdom for doctors. Pray for Maelee to
continue to build trust with us and her caregivers. Pray that she will be less fearful with
caregivers. Pray the antibiotic will be
effective to treat Maelee’s bladder infection.
Pray for Matt as he holds down the fort at home. Pray for the kids as life is a bit crazy
right now, and no schedule causes difficult behavior. Pray for Deanna as she navigates and
comprehends all of the issues at hand.
Also pray for rest and stamina for all.
We are thankful that God has us here. We expected Maelee’s medical evaluation to
take months. It is a blessing to have
all of these specialties working together to care for our girl. We are thankful for the opportunity to get
her medical care as soon as possible.
God knows every hair on her head and all of her medical issues. We pray that we will receive clarity with her
diagnoses and be able to give her the best care possible.
Thank you for praying.
Thank you to everyone who is helping with our kids. Thank you to everyone who has been checking
in. Thank you for blessing our
family. We are so grateful for all of
you!
Thursday 11/10/16
At one point today there were 12 doctors in the room
discussing Maelee’s plan of care. What a
blessing to have so many specialties coordinate together! We have added neurology and neuro ophthalmology
to her team. These specialties were
added because there is concern that her eyes are not tracking properly. This may be the result of a brain
abnormality. Tomorrow, Maelee will have
CT scans of her brain and spine under sedation.
Today she had ultrasounds of her kidneys, bladder and
spine. She also had an abdominal xray,
echocardiogram and kidney function test.
Cardiology came by today and discussed their findings. Maelee does indeed have a PDA closure device
in her heart. The cardiologist was able
to find the smallest, faintest, finest incision on her leg as the point of
entry. Right now the device is doing its
job. Her heart looks good
currently. The problem is that the
device is in the right place but the wrong angle. There is a chance that over time it may cause
blockage of her aorta artery. This is
something that will be watched over time with routine visits to cardiology. We are praying that no surgical intervention
will be required.
All of the testing on Maelee’s bladder and kidneys came back
today. She does have bladder damage and
reflux from her bladder to kidneys. This
will be treated with medications and catheterization. These are issues that we anticipated with her
paralysis. These issues can be managed
at home and prayerfully will resolve.
Maelee is still not drinking at all since Tuesday and eating
very little. She needs to eat and drink
for us to leave! Tomorrow while she is
sedated, she will receive a feeding tube. Pray she starts drinking! Nothing has enticed her: straws, sippy cups,
regular cups, bottles, milk, juice, water, Gatorade. The list goes on!
Infectious Disease stopped by. Maelee will also have blood work drawn during
her sedation tomorrow.
Maelee still has not had a bowel movement on her own. The team is hoping that if she increases her
nutrition, then she will eventually have a bowel movement. If not, we will need to investigate further
and implement a bowel management routine.
It was a busy day here today! I may be forgetting something. Thanks again for all the well wishes, texts
and calls. Thank you for understanding
if I don’t answer. Continue to pray for
our sweet girl. She has been through so
much! For those wondering about discharge…”hopefully by the end of next week,”
says our favorite resident. Womp,
womp! Prayerfully sooner!!!
Friday 11/11/2016
This morning started with a trip to have Maelee’s CT
scans. The plan was to do these scans
under sedation. Unfortunately, Maelee’s
IV was no longer working. The team was
not able to start a new IV. Thankfully
they were able to give her some medication through her nose to relax her. She laid still to complete the scans. Praise God!
When we returned to her room she had her NG tube placed
while she was still loopy. She is
currently receiving medication through the NG tube to help clean out her
bowels. After her bowels are clear, they
will begin to feed her through the tube since she is not eating or drinking for
us.
There was still the problem that she needed to have an IV
after it was blown this morning. The
team came back and was able to place an IV using ultrasound for guidance. She is a very hard stick! It was determined that a PICC line should be
placed in order to have reliable access.
Shortly after the IV placement, Maelee was able to be sedated for the
PICC line placement.
During her procedure, neurosurgery stopped by to review the
CT scans. There are no gross
abnormalities present that would explain Maelee’s paralysis. As we have shared, the MRI is really the best
tool to assess the brain. Neurosurgery
would like one more CT scan view for completeness, but they do not have any
surgical concerns. They have requested
that GI be consulted. Add another
specialty to the list!
This afternoon Maelee has been sleeping. She is completely off her schedule because of
jet lag and hospital life. Last night we
had play time from 1am-430am. Girlie
needs to get on US time!
Thanks again for praying and checking in!
