A New Reality

The last couple of weeks have been eventful indeed for our family.  This post will be a departure from the norm here at JGIG to share some personal occurrences in our family, as well as fill you in as to why posts here have been a bit sparse lately.

Some of you know already that I am very pregnant with baby #7, due to arrive late July to early August.  So I just haven’t had the energy to put into much of anything right now!  I have some posts rolling around in my head and in drafts that I’d like to get posted, but am just pooped most of the time at this point in the pregnancy, so the posts go undone.

Add to the above our recent family crisis . . .

Our 7-year-old daughter was diagnosed with sudden onset juvenile diabetes about a week and a half ago.  It was both a scary and an incredibly busy week, with her in the hospital for 4 days (2 of them in intensive care), juggling our 6 other children and hubby and I alternating times at the hospital and arranging times that we could be there together for education about our daughter’s new condition.

The balance of this post will relay our experience, in the form of daily updates that we sent out to our church and family.  Though not terribly common, juvenile diabetes is not rare, and my hope is that our experience will possibly aid other parents to identify or rule out diabetes in their own children should there seem to be a “bug” their child is just having a tough time kicking.  Hopefully none of you ever has to go through this, but our experience may help you to identify a potential illness in your child.

I’ve edited the following slightly to maintain our relative anonymity.  More to follow below.

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“Sally” is in the hospital diagnosed with diabetes.  She’s at a nearby hospital right now and will be transferred to the Children’s Hospital when they have her stabilized.  They expect to have her there for several days. Please pray for “Sally” and her family.  I’m sure her parents will send out more information when they have it.  – J.J.

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Sally’s Dad here.  What a day and a half.  Thank you all for praying.  I really realize more and more how much each little word can make an impact before our Heavenly Father’s throne.

Here is the deal . . . Sally was ill two weeks ago Sunday morning with vomiting.  She was ill for a day and then had a low grade fever for three days.  The next day she was riding her bike in her jammies and got in trouble for it.  Back to her normal bubbly self.

We had noticed that she has been sprouting lately and had grown an inch and a quarter since Feb and a half inch in the last three weeks alone.  She had thinned up and we simply thought that it was due to the growth.  She looked pale this past week and we sensed that she wasn’t well but thought she’d pop out of it with rest or simply getting past her spurt.

Saturday we got up really early and went  for a 10 am graduation for my niece, about an hour and a half away.  She looked sallow and had difficulty catching her breath as we crossed a large lawn quickly. She was in good spirits but many relatives asked her if she felt OK during the day.  She said, cheerfully, yes.  We went two hours further to another graduation and headed  for home about 9 o’clock.  We were about five miles from home and she woke up and barfed in the van.  Interestingly, I had a dream a night or two before about “Sally” being ill and barfing.  Hmmmm.

Sunday was a rest day and she looked awful.  We measured her and found the half inch of additional growth.  Then she weighed herself.  She was down fifteen pounds.  We were aghast.  How do you miss that?  She had literally disappeared these last few days.  I looked at her more carefully and she was really skinny.  Were did Sally go to?

We called the doctor and told the symptoms.  They recommended an appointment today at 11.  After a pee cup was processed we were immediately whisked across the street to the ER with a nurse to go along.  Sally got put on fluids and insulin with a diagnosis of diabetes at age 7.  Wow.  My dad was diabetic all my life.  This will take some time to soak in.  But praises in the midst…I am soooo thankful for diabetes and not other things I thought about.

In the mean time, Sally is in the Pediatric ICU at the Children’s Hospital now for extra close supervision.  She was transferred at 80 miles an hour with lights and siren from the local ER.  Wendy asked the EMT if they were “told” to go fast or if the lights and siren and speed were for Sally.  He told Wendy “It’s for her.”  Sweet.  She is not critical now but is in serious condition.  They feel her blood chemistry has bottomed and her blood sugar will get resolved in time.  She was in complete metabolic acidosis (we now know the proper term for her condition at the time is diabetic ketoacidosis).  She is a trooper and in capable hands.  By the way, her blood sugar was at 315 at the ER to give you an idea.  It was down to 197 when I returned home to tend to our other kids.

I hope this isn’t too long but I thought you might like to know more detail.  This has been an emotional day.  No one has overtly said so, but I have the strong impression that she didn’t have much longer to go until she would have been in real trouble.  I feel really bad as does Wendy, but really thankful all the same.  Our Children’s Hospital nurse told us that these cases manifest in so many different ways that they are hard to see.  I understand that.

Thank you for your continued prayers.

By the way, I told Sally last night in a rich drawl that “wees gonna find out warts aylin ya” at the doctor.  She replied “Maybe a space ‘alien’ .”  She will be fine I’m sure.

All for now.  Blessings,

Sally’s Dad

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Hi All,

Wendy here.  I’m home (around midnight) and having some food and winding down from a big day.

Sally is in the PCCU at Children’s Hospital (Pediatric Intensive Care – she was there for 2 days in serious condition) . . . they hope to have her blood sugars and chemistry in relative normal ranges by sometime tomorrow, after which she can be moved to a regular room.  It’s a slow go and her blood is drawn and sugars and gasses are measured hourly, and they adjust meds accordingly.  They have to bring her down slowly or there is risk for swelling in the brain (she also had a brief neurological exam hourly to check for brain swelling).  I saw that hubby had written that her sugar level was down to 197 . . .  they actually brought it back up (to over 300) so it can come down more slowly in pace with her other blood gasses and chemistry.  The docs and nurses describe it as a fine balancing act, and one that is very closely monitored.

Sally has been a trooper . . . her greatest discomfort is two IV sites, one for meds and the IV, the other for hourly blood draws.  She’s very tired, but her color is better.  She’s looking forward to having the IV lines out and being able eat food.  She was also having a really hard time staying warm, but as her blood chemistry has improved, she’s warmed up (extra blanket helped, too).  Her top two coolest things about the experience so far is the ambulance transport ride from the local ER to the Children’s Hospital with the lights and sirens (the EMT guys were really great), and surprisingly watching the IV lines go in.  She said it hurt (they had a hard time getting good veins), but that how it all works is really cool =o).

Hubby and I are knowing that there’s a very important learning curve coming our way in the next couple of days and for the foreseeable future.  I’ve had a few good cries . . . one or two when we sensed that something was really wrong, and a few more after the diagnosis.  We are sobered on one hand, thankful on the other . . . things could have been so much worse, the diagnosis could have been so much more serious.  In the PCCU, we have had cases around us obviously more grave than what we face.  So we are thankful and resolved to settle into a new reality.

Thank you all for your prayers and email notes . . . they are an encouragement.

And a big thank you to those who are helping/supporting in concrete ways with childcare, etc.  We appreciate you =o).

I’m off to bed.  Hubby is at Children’s Hospital tonight with Sally.  I’ll be going back early in the day tomorrow.  We’ll update when we can.  

Thanks again, all.

Wendy

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Hi All,

Sally had a good day, overall, though it started off with a bit of vomiting.  Her body is getting back in balance, and unfortunately that’s just part of it.

Her siblings all got to see her in the PCCU today . . . something Sally had been asking for – she misses them a lot.  I think it did her a lot of good to see them . . . especially to spend a few minutes chatting with her sisters.  They all did a great job at the hospital – they made us very proud with their good behavior.  We also learned today that our 2-year-old is afraid of elevators – who’d a thunk?

Sally started eating at about 4pm and didn’t stop till 10pm.  No kidding.  She ate a total of 9 packets of saltines, a garden salad with Italian dressing, a bowl of chicken soup, 6 and a half LARGE fish sticks (with mayo), and a piece of pizza.  They said she could eat whatever she wanted . . . they took blood sugars and gave insulin accordingly.  They were just happy to see her eating (ME TOO!).  I felt much like a mother bird for most of the day, as she can’t feed herself because of her IV placement, and all was given in very small bites.  I enjoyed every moment =o).  She’s cleared to go to a regular room, just waiting for space.  So for now she’s still in PCCU, though the crisis has passed =o).  Sally was looking MUCH better by early evening . . . that wonderful sparkle and that sweet way she has about her was definitely coming back.  VERY good to see!

Tomorrow starts our education on life with diabetes.  Please pray that we understand and retain all the info.  Sally is starting to grasp that what she has is a condition and not just a sickness that we can get rid of.  We understand that the learning curve will be a process . . . we need to get up to speed fairly quickly, but to really have a handle on how life will be will be a process over the next several weeks and months.

Thanks again for all your prayers and email notes, and also to those who have been able to help with the practical needs we’ve had this week.  What a blessing you all have been and continue to be!

Bye for now,
Wendy

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Hi All,

A good day for Sally.  Hubby and I are exhausted, so this will be short.

Short version – Sally tested her own blood sugar twice today (she did GREAT), and Hubby and I have both given her an insulin shot.  Lots of education today from a great teacher.  We’ll be going over it again tomorrow and meeting with her Doctor.  Tons of info, and just the basics for now with lots more continuing ed. to come over time.

Sally was finally brought to a regular room this evening.  She could have gone into one last night, there was just not one available.  She and Hubby are glad for it . . . It’s more comfortable with a real bathroom and a much more comfortable sleeping situation for Hubby (relatively speaking) and a real door providing a much quieter environment.

Hopefully we’ll be bringing Sally home tomorrow evening.  Not a definite thing, but looking good for that possibility.  She ate well again today and continued to improve.  Her sugar numbers are still high, but will be coming down slowly over time (a matter of weeks) as docs learn how her body responds to sugar/insulin.  Her blood chemistry is good now, so she is feeling much better.

Off to bed in prep for another day.  I will return calls tomorrow AM.  Hubby didn’t notice the machine this evening when he brought the children home and did the bedtime routine.  I saw it blinking at me when I got home really late.  Sorry about that.  We’ve been going pretty much non-stop, juggling, learning, and walking through the emotions of this all from morning till late night for 3 days straight.

Thanks for your prayers.  Must sleep =o).

Wendy

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Sally’s Dad here.

Sally is home!!!  Praises to our Lord and Saviour Jesus Christ!  We are soooooooo glad to be home!

Thanks to all of you for your prayers and support.  To those that called, stopped by, brought meals, prayed, kept the other children….thank you!  You have served us so lovingly.  We’re exhausted, but richly blessed all the same.

Please pray also for Tori and her family.  She is in ICU still and critical. She was in the room next to us.  She is 17 and aspirated her own vomit. Tori is physically and mentally challenged, but very loved and loving and her family is dealing with this ongoing challenge.  They really don’t know where it will end.

Please pray for the family of the infant with a heart attacked by Strep B.  Five cases nationally.  The first four have died.  I met her grandmother and great aunt. They are not hopeful and can’t go home either.  They are four hours from home.

For the family I met today on the elevator that had been at Children’s Hospital for four months.  I don’t know why or anything.  Just that time humbles me.

You see a picture here.  I am staring at a pile of diabetic supplies tonight that will keep my daughter alive.  I am realizing that this is for the rest of her life barring a cure or a healing.  I realize that in all of this, we don’t have the issues facing these other families and many more like them still there tonight.  Wow!

Sally was thrilled to watch two helicopters land on the building out of our window today.  I was fascinated too, but I also know that it meant that two families’ lives might never be the same again.  I’m going to try to remember those anonymous folks up there in prayer.

Thanks again so much.  It was a huge blessing just to know you were there. We look forward to seeing you soon.  At the church picnic for a few of us actually.

Wendy might send her own summary.  That is all for me.

Much love,

Sally’s Dad
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Hi again All,

Just a quick note to let you know how Sally is doing.  She’s gained over 7 lbs. back since Thursday (I sent this update on Sunday), so that should give you some indication of how she’s eating =o).

She’s been doing all her own blood testing, and logging her numbers and insulin injections/amounts (I’ve been giving her the shots and have a “grown-up” log that I keep).  The diabetes team at Children’s Hospital has upped her insulin a little bit each of the past two days, but that’s to be expected to get her to her target blood sugar range.  Insulin
requirements will probably go up, then drop, then go up a bit again and level off over time from what I understand at this point.

It will be another busy week this week.  A follow-up pediatrician’s appt. tomorrow, an OB appt. for me on Wed., Hubby’s mom is coming for the day on Tues. with his sister and possibly her 4 girls.  And daily calls to Children’s Hospital to report the 5 blood sugar readings and 4 shots that Sally is getting.  Then more appointments over the coming weeks and months.  Yup, we’re settling into a new reality.  But it’s going well, and the emotions of it all are beginning to level out a bit.

Thanks again for all your prayers, emails, and your practical help.  We appreciate all of you!

Off I go . . . our Bottomless Pit aka Sally is having another snack, then a check of her blood sugar and off to bed =o).

Love you all,
Wendy

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So there you have it in a nutshell.  Sally came home Friday evening and we’ve been going non-stop since then with normal life, a few extras thrown in (Hubby took the rest of the children to the church picnic on Sat., church on Sun., follow-up with Sally’s pediatrician on Monday, Hubby’s mom for a day-visit on Tues. (along with aunt and
cousins).  I have an OB appt. on Wed. and then I think we are commitment-free for a few days =o).  Throw in 5 blood sugar tests and 4 injections a day with a daily call to the Children’s Hospital Diabetes Team to report all the numbers for Sally’s blood tests for tweaking of insulin doses and you can see where life is kind of non-stop!

All told, Sally is doing really well, gaining a good chunk of her lost weight back and handling “thinking like a pancreas” really well.  As parents, Hubby and I are settling into a new reality of having an insulin-dependant child and all that that entails.  After we picked up supplies from the pharmacy (2 types of insulin, syringes, test strips and a lot of other stuff), we sat on the couch and looked at the two bags full of things that would keep our daughter alive for the next 1-2 months.  Yup.  A new reality.

God has been so good . . . our church family has been a wonderful support in prayer and in the practical with childcare for our other children and supplying meals for our family when needed.  We are very blessed.  We are also grateful for a diagnosis that is a manageable condition . . . when we realized at the beginning of the Memorial Day weekend that Sally was more than just fighting a “tummy bug” and made her appt. with the pediatrician, we had a day or two (holiday weekend and the triage nurse I talked to seemed to think that she would be okay till Tues.) to look up some stuff with her symptoms online . . . many of which were much scarier than diabetes.  So though this is a life-changer for her and us, we know it could have been so much worse.

I’m learning to log blood sugars and administer (give shots) and log 2 different types of insulin, count carbs (not so much now, more after a couple of weeks as we learn how her Diabetes Team wants us to do it – continuing ed. is ongoing).  Sally is learning to log the info as well, in her own little log book.  She does all her own blood tests (she’s a pro now!) and I’ve been giving her her 4 shots per day.  This should be interesting when we have a newborn – between nursing and testing and injecting and counting . . .

A wise friend of mine told be a phrase that Elisabeth Elliot clung to after her husband Jim was killed and she was alone with their small child(ren) –  “Just do the next thing.”  It’s been a good phrase to have echo in the back of my mind.  Next week this will all be easier than this week, the week after better still.  We will have continuing education at Children’s Hospital for the foreseeable future, and should be pretty much up to speed by the time the baby comes.  Then I suppose for a while it will be back to “Just do the next thing” for a while as we get to know this new baby and adjust to what the baby’s and Sally’s schedules require.

Looking back (as is often the case), we can see where Sally’s symptoms lined up with a diagnosis of diabetes.  EVERY doctor and nurse that spoke with us reassured us that diabetes can be ambiguous in its presentation, and to not beat ourselves up over it.  A good list of symptoms to tuck away in your brain can be found at
http://www.healthscout.com/ency/68/544/main.html#SymptomsofJuvenileDiabetes.

Though Sally did not exhibit all of the symptoms, she did exhibit most of them – the ones consistent with a persistent tummy bug.  Her peeing in a cup was all it took at the pediatrician’s office to quickly determine (at her stage of illness) what the trouble was.

Mostly we’re just thankful to be on this side of the crisis and to be on a navigable path.  And we are thankful that we live within 30 minutes of one of the top children’s hospitals in the country, with a top-notch juvenile diabetes team.  God has been gracious in so many ways over this eventful chunk of time in our family.  We would appreciate any prayers you feel led to pray for us.