Discharged Today!

Kaylinn is doing much better today so they "unplugged" her from all the machines this morning and let her go for a walk around the hospital and then mid morning I was able to take her to the play room - which she absolutely LOVED!  And after we got back to the PICU they brought Tucker to see her again!  So it was a good day!  She loved Tucker, until he licked her foot and that scared her half to death!   She had to have more lab work done and we were so thankful that the lab technician was able to get the blood through her IV - he wasnt' sure he'd be able to but he was and we were all greatly relieved after the whole needle experience with her yesterday (lets's just say, the entire 3rd floor knows Kaylinn hates needles!).  Then they discharged her and she goes back tomorrow for follow-up.   We'll get her lab results then as well.  Everything with the MRI was normal so that is good.  Both doses of the reflux medicine they gave her came back up again so they are trying a different medicine now which she will start tonight.  We are hoping we can plan on heading back to Pohnpei early next week.  We are frustrated and disappointed that so far they have no definite answers for her problem but they have run out of tests to do.  

Tonight's Update

Kaylinn is finally asleep and Rickson headed back to the hotel to try to wash some of our clothes and then get some sleep.  So I finally have a chance to sit down to the computer!  Been quite a day!  Tests all day basically.  She did get a little break from tests mid morning and they brought in the hospital dog for her to play with.  His name is Tucker and she fell in love!  I bought her a little stuffed version of Tucker in the gift shop and she has played and played with that (shown in the picture above)!  

They used a different drug for her for the MRI, much milder than yesterday.  She was pretty funny going out.  And a surprise to all of them too!  They were all ready for the worst - had everything ready in case of an emergency and a whole room full of doctors and nurses and everyone.  As they began to put the meds through the IV she started saying "uh-oh" over and over and each time it got loopier and loopier sounding.  But she kept trying to get up and fight everyone too which surprised them as they said it should take effect immediately.  It took awhile to get her completely out.  The MRI went well - we'll get the results tomorrow but they don't really expect any problems to show up.  She woke up right away afterwards and was so cute on the way back to the ICU.  She kept giving us the funniest smiles.  I was thinking she would be sleepy the rest of the day, but not Kaylinn!  She has to prove all doctors wrong!  She's been bouncing off the walls.  She's seen quite a few different specialists throughout the day and they also put her on a new medicine for acid reflux in case that is the problem.  She promptly threw up the medicine so not sure if that's going to do much for her.  She also got irritated with everyone this evening and threw her cup of yogurt at the monitor machines.  I don't think the nurse was too thrilled with the mess!  I'm hoping Rickson is able to get some laundry done at the hotel tonight as I have been thrown up on, been attacked by a wild child on a yogurt rampage, and got sprayed with the IV meds when they removed it earlier.  

As for the test results and all, well, we're not much closer to finding out the problem.  They've been able to rule out a lot of the really bad things it could have been so that much is good.  They all say the same thing - it's definitely unusual and obviously something very rare as she has such odd symptoms.  They GI specialist said he wishes they would have called him before the bronchoscopy as there are some tests he could have done then but he really doesn't want to have to sedate her again.  He's going ahead and treating her as though the problem is acid reflux though, but he's not really sure that is the problem.  The pulmonologist that saw her tonight is going to test her for some allergies though again he's not certain that's the cause.  They are just trying to cover every avenue.  We are having to face the reality that we may not find out the cause.  They are having us take CPR just in case.  We are not giving up yet though - still praying for an answer.

Hoping to get a good night's sleep - we definitely need it after the past two days!  Will give an update tomorrow.  

Quick Update

Quick update here as lots going on.  Kaylinn's MRI will be at 4:30 this afternoon.  She saw the ENT specialist this morning but she didn't seem to think there was anything wrong with her tonsils!  The surgeon came in later and well, he disagrees - he said he would talk to the ENT himself to see what she thinks.  The ENT also is putting in a request for us to see a pulmonologist and a GI specialist.  Meanwhile, they came in to do an echocardiogram as they just now informed us her EKG from yesterday wasn't normal, there may be a problem with her left ventricle.  The good news - she is being seen by specialists much more quickly  now.  The bad news - none of them seem to agree on her problem!!!!   Kaylinn is restless and cranky.  She woke up happy and in a very good mood - yelling "hey" at everyone that walked by our area and singing "Hallelu,  Hallelu" at the top of her lungs.  However, now after being poked with needles and everything else they've done, she's had enough!  Hoping to have some answers later today.  Thank you for your prayers.  

BTW, Kaylinn has learned how "fun" it can be to keep pushing the nurse call button!  

Update on Kaylinn

Ok, I'm sorry it's taken me so long to post an update but things have been crazy today.  We are in much need of prayer right now.  We took Kaylinn to the hospital for her bronchoscopy at 5:30 this morning.  She was taken back and put on the anesthesia at 7:30 and by 8:00 AM they came to tell us all went well and they had found the problem!  Her tonsils are very swollen, so much so that they could hardly get the scope down.  Plus, she has some excess tissue in the back of her mouth.  They said the two combined is what is causing the problem.  This was an answer to prayer; however, it was not something the surgeon could fix but we would have to be referred to an ENT.  The surgeon contacted the pediatric ENT (the only one here) who told us she could not squeeze Kaylinn in for another two weeks!  The surgeon assured us he'd keep working on it and see if they could get us in sooner.  Meanwhile, we went back to wait for Kaylinn to come out of recovery, which we were told should only be about 15 minutes.  An hour later, the anesthesiologist came out to talk with us and said there was a little problem - they couldn't get Kaylinn to wake up!  They said this wasn't normal and he wasn't sure what was going on.  He reassured us she was "fine" though.  Another hour went by and they came to inform us her eyes were open but she was like she was paralyzed, which didn't make sense considering the low dosage of meds they gave her.  They told us they were admitting her into ICU.  Another hour went by and we were told she was finally breathing on her own, just with an oxygen mask but was off the ventilators but they were afraid there was something more serious causing all this.  Finally, I was allowed to see her.  She was pretty loopy though.  It's now 8:00 PM and we are in the pediatric ICU.  I'm not sure how long we will be here.  The good news is, they are FINALLY doing something.  The doctors came in and went over her entire history beginning till now and all said the same thing - they've never come across a case like this!  Leave it to our family to have to make medical history!  She will be seeing a pediatric neurologist and a pediatric ENT tomorrow.  She will be having an MRI tomorrow which will have to be under anesthesia again which means we'll probably be here another night.  They are now starting to think she has two separate problems.  The swollen tonsils would cause the sleep apnea but not the cyanosis while she is awake.  They are still leaning toward the theory of seizures being the cause.  Hopefully the MRI will give us the answers we need.  We were looking forward to seeing our other children by the end of this week - now things appear to be changing again.  Please pray for Kaylinn through this - she hates being hooked to all these monitors.  And pray for our children back home - it's hard on them and us to be separated!  We need to go home soon, but we also need Kaylinn to get well!  Thank you for your prayers.  I will update as I can.  

Kaylinn's Bronchoscopy Tomorrow

Tomorrow's the day!  We have to leave the hotel around 5:00 AM to have Kaylinn there at 5:30.  She's already had her "last" meal and is in bed.  Doing the test early in the morning is actually easier since her time of not being able to eat is while she is sleeping.  

We are praying this test will give us the answers we need and they will be able to fix the problem tomorrow!  We really need some answers and to see Kaylinn get well.  And we need to get back home to the rest of our family.  This is a huge prayer request and we ask that you all please pray with us on this.  

Good News!

Yes, we have good news!  The pediatric surgeon said that he is overscheduled and even booked into November!!!  But understanding our situation he said he'd see what he could do.  After waiting for a bit, they came back to tell us that she is scheduled for the bronchoscopy for 7:30 AM on Tuesday!!!!  He went over her complete history and then said, "this is definitely an unusual case!"  Kaylinn, our little mystery!  He said he is going to confer with some other specialists including an ENT as he has never run across anything quite like this.  Interesting.  So our specific prayer request right now is that the bronchoscopy will show EXACTLY what the problem is and that it can be fixed at the time.  

Kaylinn's Consultation Today

Ok, today isn't a big day of tests for Kaylinn but it is a deciding factor in how much longer we will have to be here.  So much prayer is needed!  We will be meeting with the pediatric surgeon at 1:30 PM to decide what will be the next step and when her bronchoscopy will be.  We are praying that he will be able to schedule it soon (tomorrow would be great!).  From what we are understanding, there are only 3 pediatric surgeons here who can do this and 2 are off island at the time, so this doctor has a triple load of cases at the moment.  So it will take a miracle to get her in for the bronchoscopy soon.  BUT, we know God can "rearrange" this doctors schedule and get Kaylinn in!  Kaylinn's taking her morning nap right now and then we will head off to the hospital for the consultation.  Thanks for praying!  

P.S. Rickson has a cold right now so I ask for prayer for him as well.  Pray that he will feel better quickly and also that this will not affect the scheduling as we were told with the EEG that if there was a sick family member, they may choose to reschedule due to the risk of an infection.  

Kaylinn's Update

Hi, I know everyone is waiting to hear how things went today, but we ALL ended up falling asleep as soon as we walked back into the hotel room!  It was an exhausting day!  Now we probably won't be able to sleep tonight!

The test went well.  Kaylinn had a hard time waiting it out till it was time for them to take her - she was desperate for food and sleep!  The pediatric anesthesiologist was really nice and we really liked him - even found he's been to Pohnpei recently and stayed at the Village hotel near where we live.  He reassured us that she would be fine and went over all that would happen.  Then he put her to sleep, which yes, was a bit traumatic for mom!  About an hour later we were with Kaylinn in recovery where she put up quite a fight!  She did NOT like the monitors hooked to her or the IV and was determined to get them all off.  We brought her straight back to the hotel where we then slept for the next several hours.  The doctor said she did fine during the test and never stopped breathing and that there were no abnormalities in the EEG that he could see.  I believe the doctor on Thursday will give us more info about the test.  

Thank you for praying.  Kaylinn seems to be fine at the moment and the anesthesia seems to be wearing off - she can walk a straight line now! :)

Kaylinn's EEG Today

Kaylinn is not too excited about being woke up this morning at 5:30!  But she has to stay awake from now until her EEG at noon.  She also has to finish eating before 6:00!  This could be a rough day for her (and for mommy!).  Please pray for this test that we will have some answers from it.  And especially pray for Kaylinn during the test.  Usually an EEG is a very safe test; however, she will have to be put to sleep for this and that brings up the possibility of her breathing stopping again.  The hospital has specialists scheduled to be with her during the test in case of problems.  Please pray for Kaylinn today that all will go well.

Kaylinn's Test Today

Kaylinn did pretty well with the Upper GI X-Ray.  It was traumatic for her not being able to have anything to eat or drink all morning and then she absolutely HATES the X-Ray room!  A lot of crying, but she got through it ok.   The doctor said he couldn't see anything abnormal but he will be working on a complete report to give to the pediatrician who she will be seeing again tomorrow.  She's been a little cranky throughout the day (but then again, who could blame her!) so we've tried to "spoil" her a little.  Hopefully we'll all be able to get a good night's sleep now.

Schedule of Kaylinn's Appointments

Things are finally starting to get moving with her appointments.  Here is the schedule as of now:

Today - 1:00 PM - Upper GI X-Ray
Tomorrow - 11:00 - Follow up with the pediatrician
Monday - 12:00 Noon - EEG (she will be put to sleep for this one so it is of some concern. They have the pediatric anesthesiologist scheduled to be with her since she has a history of her breathing stopping during sleep)
Next Thursday - 1:30 PM - consultation with the pediatric surgeon for the bronchoscopy

Second Update for the Day!

Ok, new update!  Just got a call from the hospital and they were able to get her scheduled for the upper GI tomorrow!  Yay, things are finally moving!  They are also trying to get an appointment for her EEG as soon as possible too but hadn't been able to get a confirmed appointment yet but will call us as soon as they do.  Thank you for praying!  We will let you know how the test tomorrow goes!

Latest Update

Kaylinn is scheduled with the pediatric surgeon for September 22.  We had hoped to get her in much sooner but that is the earliest they can get her in.  They should be letting us know by the end of today when her other appointments should be (EEG, sleep study, upper GI, etc).  She had an appointment with the pediatrician yesterday but that was basically just a follow up.  The previous night she seemed to have another slight breathing episode, but it only lasted a few seconds.  She then cried the rest of the night so something was definitely bothering her.  She didn't really go to sleep till around 5:00 AM.  She seemed fine though later when she got up and was fine at the pediatrician's office.  About an hour after we left the hospital though she started vomiting.  We took her back to the hotel but she continued to throw up so we called the pediatrician back.  She said to give her only pedialyte and if she continued, then to take her to the ER.  We took her to the ER later that evening as it seemed to only be getting worse.  They admitted her and ran some tests, did an X-ray of her stomach, and gave her some anti-vomiting medication.  Everything checked out fine so they decided we should take her back to the hotel.  She slept fine through the night and is back to her perky little self this morning.  So again, back to the waiting.  Please keep praying.  We're hoping to get these tests and all taken care of as soon as possible but the doctor has basically said this could all end up taking a month or more!  We are having to make some decisions now as to what we will do next (Rickson stay or return to Pohnpei, etc.) as we have the other children and our ministry back home.  Please pray with us that God will make it clear what we should do.  

Weekend Update

Well, there isn't a whole lot of new news to give at this point but I know a lot of you are wondering how things are going.  We should hear back from the doctors office by tomorrow about a better date for Kaylinn's bronchoscopy.  Meanwhile, we just wait...

Kaylinn seems to be doing pretty good.  She no longer has a fever and for that we are thankful!  She is enjoying having mom and dad completely to herself!  We sure are missing our other children though!

Thank you for your continued prayers.

Update on Kaylinn!

Ok, WOW!  Since my last update SO much has happened I hardly know where to begin!

  

Kaylinn continued to run a high fever the entire flight.  She wasn't too fussy, though did have one incident of vomiting but other than that the flight was ok, just VERY long and exhausting.  A couple leaving Pohnpei were also on the flight and he is an ICU nurse and talked with us a lot about Kaylinn.  He was very helpful and encouraging.  We thank God for bringing people such as these along our paths that can really encourage.  Plus, it was a great comfort knowing there was an ICU nurse on the plane in case of emergency with Kaylinn!  We arrived in Hawaii around 4:00 AM and settled in to try to get some rest - it wasn't very restful as Kaylinn didn't really want to sleep at that point.  We left a couple of hours before our appointment to make sure we could find everything fine.  Once we arrived at the hospital and talked the woman at the information desk, this very rude woman informed us we didn't have the proper information and we weren't in the system and there was nothing they could do for us!  Needless to say, it was a stressful couple of hours trying to get things figured out.  I will suffice it to say, there are certain people who simply have no business working at an information "help" desk.  After about 2 hours of frustration another man who worked at the hospital walked by and asked if he could help.  I explained the situation (Kaylinn had fallen asleep at this point so Rickson was walking around with her) and this man simply made one phone call, then personally took us to the right office. We thank God for bringing another person into our life to help out!  Of course we were in the system and our appointment was set; for some reason the other woman just did not want to help us figure it out.  This man went out of his way to help and remedy the situation.  He even stopped by later to make sure we were ok!  

The doctor was wonderful!  She was so personable and understanding and wants to do everything she can to figure out Kaylinn's problem.  She has ruled out several of the possibilities of the cause of Kaylinn's problem but still does not know what it could be, though she said she is leaning toward the possibility of seizures.  We were at the hospital all afternoon and into the evening.  The x-rays and all were rather traumatic for Kaylinn (she even threw up a few more times all over radiology - and mommy) but she got through it.  The x-rays showed nothing though so they are scheduling her for a bronchoscopy, EEG, and sleep study.  Unfortunately though, the doctor explained, none of this can be done quickly.  We have no idea how long we will have to be here - a circumstance that is a little worrisome (though we know God is in control and knows!).  The doctor considered admitting Kaylinn now, but has decided that we can keep her with us though if she shows even the slightest problem again, to bring her straight to the ER to be admitted.  We are hoping to hear by morning when the other tests are scheduled for.  

Thank you for your continued prayers.  We are in much need of prayer right now!  The past two days have been difficult and stressful.  It is nice now to have a bit of a "quiet" evening.  Kaylinn took a long nap and is now playing with daddy while I catch up on email and this blog using the free wi-fi at Starbucks (how we've missed Starbucks!).  I will keep updating as often as I can.  

Flying Out Today

We fly out for Hawaii today.  Yes, my nerves are a bit on edge! LOL!  But trusting the Lord.  Kaylinn has had a high fever since yesterday afternoon and that has us concerned.  Please pray this goes away for the trip!  I also seem to be coming down with something so also could use some extra prayer as I need to be feeling good to take care of Kaylinn.  

Please pray the trip goes smoothly and we can get her to her appointment with no trouble.  We will update you more once we have had her first appointment and know more what's going on.  Her appointment is HI time at 1:30 PM Wed.  

Thank you for praying!!!

Kaylinn's Medical Situation

Some of you I'm sure are already aware of what is going on with us and our little girl, Kaylinn, but I'm going to go ahead and explain the entire story here for those who are just hearing the news.  Most of you may remember her choking incident last November.  Though she coughed up a piece of plastic at the time and seemed fine after that, since then she has had many episodes of choking, gagging, and even her breathing stopping for a time.  It would terrify us at the time and then as she would recover she would seem fine.  Our doctor always just told us to keep observing.  This summer though the amount of episodes increased considerably - sometimes she is awake when it happens and it appears she is choking on something; other times she is asleep and we find her blue and not breathing.  Her pediatrician is now pretty concerned about it and the possible causes.  She has named a number of possible causes including the possibility that she may have NOT coughed up everything lodged back in November or even could have developed a cyst.  She has now referred us to a specialist off island.  We have tickets now for Wednesday, September 7th to leave for Hawaii (that is Tuesday for those of you stateside) and Kaylinn will have her first appointment that afternoon at 1:30.  We are told she will be seeing 3 different teams of specialist during our time there and they will determine what should be done after our initial consultation on Wednesday.  

Specific prayer requests at this time:

1. A safe and uneventful trip to Hawaii - there is always the concern she could stop breathing again while on the plane.
2. Wisdom and guidance for the doctors that will be seeing her.
3. That Lord willing, it will be a minor problem, easily fixed.
4. Specifically, that the issue will NOT be a congenital problem as if this is the case, our insurance will NOT cover any of the testing and treatment.  We believe the issue is related to her choking incidence and that this will not be a problem.  
5. And pray as well for our 4 children staying behind on Pohnpei and the church families that have so willingly offered to stay with them and take care of things here for us.  

We will keep you updated here on the blog as often as possible over the next weeks.  We do not know at this point how long we will be in Hawaii.  The Patient Referral Representative in Hawaii told us it could be anywhere from 1-2 weeks or longer, there is really no way of estimating until they have more of an idea of what her problem is.  Meanwhile, Kaylinn is doing well.  She seems fine during the day, pretty much as if nothing is wrong.  But then she will just randomly stop breathing and we never have any warning signs of when it's going to happen.  We can't leave her alone for a second, even while she is sleeping.  Needless to say, I haven't had much sleep!  

Thank you for praying!  Please check back here for updates!