Annie, Annie, Annie

My friend, Brenda, has a 6 year old daughter, Ella, who was Annie's friend before her brain injury, and a 3 1/2 year old daughter, Katya. Here is her e-mail to me from Monday:


My heart is breaking for you and your family. It is amazing how God works. He has been bringing you all to mind so much. In fact I was praying for you all this morning in the shower. Then later this morning the girls and I were in the car on the way to the dentist and Katya started saying, "Annie, Annie, Annie." Then Ella said, "We know an Annie. Mom, do you know where she is?" Katya said, "She is in heaven."


I said, "No, she is probably at home or at school." Then Ella said, "Maybe she is in the hospital." She asked if I had your number and said I should call you right then. Of course, I said no but I would call you later. 

You see I had no idea that Annie had passed on to heaven on Friday. I am so sorry for your loss. We will all miss Annie.

I am here in prayer always and please let me know how else I can support you and your family.

I love you guys,

Brenda

More info...

We wanted to let you know that there will also be a viewing time for Annie on Friday, April 1, from 10 am to 5 pm at Purdy and Walters at Floral Hills Cemetery, 409 Filbert Road, Lynnwood, WA 98036-4934.

Also, you may make donations in Annie's name to Union Gospel Mission, P.O. Box 202, Seattle, WA 98111-0202.

Annie's Memorial Service

Please accept our invitation to join us next Saturday, April 2, 2011, to celebrate Annie's brief, but very full life. The service will begin at 11 AM, at Northlake Christian Church, 19029 North Road, Bothell, WA 98012. A reception will follow.

I need to tell you how comforting your comments have been. It's quiet around here today--no medicines to prepare, no little Miss Muffet to hold...but your love and prayers help us bear the load of grief.

Jean

Brothers and sisters, we do not want you to be uninformed about those who sleep in death, so that you do not grieve like the rest of mankind, who have no hope. For we believe that Jesus died and rose again, and so we believe that God will bring with Jesus those who have fallen asleep in him. According to the Lord's word, we tell you that we who are still alive, who are left until the coming of the Lord, will certainly not precede those who have fallen asleep. For the Lord himself will come down from heaven, with a loud command, with the voice of the archangel and with the trumpet call of God, and the dead in Christ will rise first. After that, we who are still alive and are left will be caught up together with them in the clouds to meet the Lord in the air. And so we will be with the Lord forever. Therefore encourage one another with these words. 1 Thessalonians 4:13-18

God's Plan

Dear Annie entered into the presence of Jesus this morning at 7:30 a.m., after succumbing to a sudden infection and resulting bacterial sepsis. She fought a good fight, and her medical team gave their all. We are heartbroken, but our comfort is knowing that she is with the Lord.

We feel your prayers,

Jean

You saw my body as it was formed.
All the days planned for me 
were written in your book before I was one day old. Psalm 139:16

The Plan

Well, since this weekend, Annie's gotten back up to a grand total of 25 ml./hr. of formula through her j-tube. If you remember, she was up to her goal rate of 62 ml./hr. when we were discharged, which only lasted for about 24 hours after we came home. Why? I. don't. know. So for now, we've decided to feed her via TPN, or PPN (partial parenteral nutrition) for the foreseeable future. She will have a central line placed later this week. She already has begun receiving nutrition through her IV, and is perking up from that, as well as the IV fluids she's getting.

Annie's gut may need more time to recover, or it might not recover--you never know until time passes. We will continue trying to advance the rate on her j-tube feeds, but if she can't do it, she'll at least be getting enough food through the central line. Now, the downside of parenteral nutrition is the risk of infection, as well as the increased nursing requirements of administering it. But Annie needs food, and TPN/PPN is what she can do for now.

So that's the latest. We appreciate your prayers for strength and endurance for all of us, and healing for Annie.

Jean

For who is God, except the Lord?
And who is a rock, except our God?
It is God who arms me with strength,
And makes my way perfect.  Psalm 18:31-32

Yo-Yo

We thought she was ready to go home on Wednesday, but...she wasn't. The 24 hours we had at home were bumpy. She vomited in the middle of the night, then was gaggy/nauseated most of Thursday, then vomited three more times, and by the time we got to her pediatrician for a follow-up, she was looking sunken and grey again. The blood draw to check her electrolytes at the local lab was unsuccessful, so we went back down to the hospital to have labs drawn, and then decided we needed to admit her. Oh, and the other thing was that she had seven seizures while we were home--forgot about that detail.

The on-going problem is that we are having trouble keeping the amount of fluids/nutrition she needs inside her body. She is tolerating 40 ml./hr. formula into her GJ tube without gagging, but that isn't enough to maintain hydration. It appears that her gastric system just hasn't recovered it's pre-flu status.

So, we are problem-solving while she gets IV fluids. We increased up her hydrocortisone dose again to double. Her seizure meds will probably need to be increased.  Also, she is being tested for celiac, to see if that may be contributing to her gastric problems. But her thyroid levels are in the 75% of normal, so those are not a contributing factor. I think the bottom line is that she needs to recover from the flu complication of gastroparesis--quickly.

Thank you again for your prayers,

Jean

Maybe Tomorrow?

I'm going to be bold and say we're heading home tomorrow. Annie's feeds are at full rate and full strength into her GJ tube, the TPN is off as of Sunday, and the PICC line is supposed to come out later today. This weekend, she contracted an infection (presumably in her PICC line) that complicated things a bit. But she responded well to the antibiotic, and with the PICC line out, the infection source will be gone, too. If we go home tomorrow, we will have spent 26 days in the hospital. That's how strep and the flu can affect a medically complex kid.

But God has answered our prayers, and Annie is almost back on her saddle. I want you to know that we have felt your prayers--Jesus really does comfort, heal and strengthen. His angels have been with us.

I'll update after we have a few days of settling in.

Jean

As a father shows compassion to his children,
so the Lord show compassion to those who fear him.
For he knows our frame; 
he remembers that we are dust.
As for man, his days are like grass;
he flourishes like a flower of the field;
for the wind passes over it, and it is gone, 
and its place knows it no more.
But the steadfast love of the Lord is from everlasting to everlasting 
on those who fear him,
and his righteousness to children's children,
to those who remember to keep his covenant
and remember to do his commandments.
The Lord has established his throne in the heavens,
and his kingdom rules over all.
Bless the Lord, O you his angels, 
you mighty ones who do his word, 
obeying the voice of his word!
Bless the Lord, all his hosts, his ministers, who do his will!  Psalm 103:13-21

Day 21

Annie visiting with Miss Tricia--a first-rate CNA and hairstylist.

Yes, Annie's still inpatient. And impatient. She's still walking around in her Kidwalk; still doing well; but still only up to 30 ml. of diluted formula per hour. Discharge criteria is 50 ml. Pediasure at full strength, and no TPN. So we're at least a few days away from going home, barring no speedbumps.

Now, you would think that we would get used to the hospital gig, but it never gets easy. I just keep repeating to myself that we did this last year for 7 weeks with Bill, so it's not that bad.  We did this last year for 7 weeks with Bill, so it's not that bad.

The antibiotic I got at the walk-in clinic on the way home from the hospital should help. I never really recovered from the flu I shared with Annie, and it has now disguised itself as a respiratory infection. The doctor says after three days I should feel better. And we did this last year for 7 weeks with Bill, so it's not that bad.

Jean

The steadfast love of the Lord never ceases;
His mercies never come to an end;
they are new every morning;

great is your faithfulness.  Lamentations 3:22-23

T.otal P.erky N.utrition

As you can see, Annie is doing very well on the TPN--who cares about tube feeds anyway? She still hasn't gotten past 15 ml. per hour on her GJ feeding rate, but obviously it doesn't seem to be bothering her in the least. So, we will probably be making a plan to go home soon on TPN, and then continue to increase her tube feeds over time.

Thank you for your prayers--you can see that God is answering.

Jean

Gastroparesis

Annie has suffered from varying degrees of gastroparesis for four years. We have had countless discussions with doctors and dieticians about how to cram enough food into her gut and get it to go through without coming back out--ad nauseum. Now, the strep/flu bug that got her admitted to the hospital two weeks ago has brought up this whole delayed gastric emptying problem again, front and center.  The flu seems to have stopped whatever motility she DID have...and now, nothing is going down. Last night she threw up again. So, for the four times we've tried to advance her feeds, she has thrown up.

Now, for those of you not familiar with gastroparesis, it's a common problem for kids with neurological disorders. Some really smart people think that it's a vagal nerve problem that causes it--the vagus nerve doesn't work to move stuff down and out of the gut. Sounds reasonable.

What this means for Annie, is that she doesn't move food down and out. Rather, what happens is that I put the food down and she moves it up and out. She doesn't have the motility or the capacity for the amount of food she needs. It does not move DOWN and out. It moves UP and out. The result is that she has been chronically undernourished for four years. She hasn't gained any weight since September of 2007.

This was borne out in the xray taken this past week, to see if she had pneumonia. Her lungs were clear, (praise God), but the xray showed two compressed vertebrae, most likely a result of chronic undernutrition. Her bones are brittle. She doesn't get enough to eat.

Now, what makes this more complicated is there is no cure for gastroparesis. There are only things you can try to see if they work. G-tubes. GJ-tubes. TPN. Motility drugs--all of which have significant side effects, such as tardive dyskinesia or cardiac arrest. Starving also has significant side effects such as death.

So here we are between a rock and a hard place.

For you researchers, here's an interesting article called "The Riddle, Mystery, and Enigma of Gastroparesis." It's written in the context of cancer, but the possible treatments are all things on the table for Annie.

For you pray-ers, please keep Annie at the top of your list.

Jean

chron·ic (kron'ik)

adj.

Of long duration. Used of a disease of slow progress and long continuance.

Annie was gaggy last night at only 15 ml./hr. of pedialyte into her jejunum. Then this morning, she seemed better, and after awhile, the rate was increased to 30 ml./hr.

Then she threw up.

When Can I Go Home?

Annie got her G-J tube placed this morning, and should be getting food through her jejunum by this evening. We had to go this route because going through her stomach was getting us nowhere--she kept throwing everything up. As of yesterday, she had gained back two pounds just from the TPN, so we are thankful for that. She had been down from about 43 lbs. to 38 and change...and now she's back up to over 41. Now we'll see how she tolerates food into the jejunum, and hopefully, we can start tapering off the TPN. Then, we'll go home.

As always--we are grateful for your continued prayers.

Better

God has answered many prayers--thank you so much to all of you who have been faithfully praying for us. Annie seems to have turned the corner on the flu in the last two days, and has started back on taking Pediasure via g-tube, along with her TPN. The goal is to continue to increase her g-tube feeds until she doesn't require the TPN and then assuming all goes well, be discharged.

Meanwhile--she has lost a lot of weight, and is pretty deconditioned. She used to be skinny. Now she is bony. Pray that she regain the weight she's lost and maybe even gain more. I think maybe that's what sister Olivia is telling her to do--eat!

Jean

The Lord is my shepherd; I shall not want.
He makes me lie down in green pastures.
He leads me beside still waters.
He restores my soul.
He leads me in paths of righteousness for his name's sake.
Even though I walk through the valley of the shadow of death,
I will fear no evil,
for you are with me;
your rod and your staff,
they comfort me.
You prepare a table before me
in the presence of my enemies;
you anoint my head with oil;
my cup overflows.
Surely goodness and mercy shall follow me all the days of my life,
and I shall dwell in the house of the Lord forever.            Psalm 23