all home!

Well, the family got home yesterday!

Ginger is now sick, and Ian & Henry are still sick and dealing with the messy effects of the stomach bug. Poor mom & dad!

Along with breathing treatments Ian is on steroids again. Last night when asked if they were hungry and ready to eat dinner, Ian’s response was an emphatic “yes,” while Henry simply responded, “I don’t like dinner.” Oh well!

Keep praying, everyone is exhausted and hoping things can go back to “normal” as soon as possible.

For maximum cuteness, click here to see the boys demonstrate the most efficient way to eat noodles.

twins with trains

twins with trains

Ian hospitalized, but stable.

The poor Adams family tried for what feels like the 100th time to take a family trip out to see Ginger’s family in Albequerque, and Ian became very sick. Here is Ginger’s summary:

“Ian has been hospitalized since yesterday (Saturday). He had been sick with a cough and runny nose that we had been treating with albuterol breathing treatments and he was acting like he felt pretty well. Our family had plans to take a trip to visit family in Arizona and New Mexico.

Henry seemed to be feeling worse on Christmas day in the evening when he started vomiting but he seemed to be doing well enough that we decided to drive to Phoenix as planned on the 26th. At that point, Ian seemed to be getting over his cold and was acting fairly normal. We spent the night at Ginger’s Mom’s house and took our flight to Albuquerque early on the 27th.

Ian started vomiting before the flight and once after we landed. Ginger’s dad picked us up and we made the 3 hour drive to Ginger’s Dad’s house. Ian was acting a little more clingy and by the next morning, he was acting lethargic.

We decided to take him back to Albuquerque to UNM Children’s Hospital. They saw us and initially planned to observe for 6-8 hours given his medical history, despite him saturating well on room air and lungs sounding good. Theydid a chest x-ray and started oral steroids to treat “viral induced asthma” (because of his chronic lung disease, his lungs are fragile and sensitive to virus irritations, altitude changes, temperature change and all of these things happened with our trip).

He does not have pneumonia, his lungs can react to irritation by getting inflamed and twitchy. A few hours of being in the ED, he started to need oxygen support, and more when sleeping. Today he was able to go without any oxygen, but desaturated when he slept, so they will watch him tonight and if he is able to sleep without needing oxygen support, they will release us in the morning. Our flight back is scheduled for the 31st.”

Caid helping out little bro Ian with  breathing treatment

Caid helping out little bro Ian with breathing treatment

The boys have had a few bugs over the past months and generally have been able to fight them off with some doctor visits and breathing treatments. So that’s been encouraging.

As frustrating as it is to have another attempt to visit family interrupted, I know Ginger & Joey are just happy that Ian appears to be stable.

Please be praying and thinking of them! I’ll update again as soon as i know more. ~cnp

a few recent pictures of the boys…

The family celebrating Caid's 8th birthday, and the twins' 3rd back in October

The family celebrating Caid’s 8th birthday, and the twins’ 3rd back in October

Ian hanging an ornament

Ian hanging an ornament

Henry's turn!

Henry’s turn!

...and big brother.

…and big brother.

good news!

Ginger writes:

Henry’s platelets continue to climb, and his NK cell function test was within normal range…So we are going home today!!

brother twins, at CHLA this morning

brother twins, at CHLA this morning (obviously they’re not identical, but if anyone ever wonders which is which, just look for ian’s chin, or henry’s hair)

Short post, but we had to let everyone know. There’s still a lot the doctors need to figure out, but it’s ALWAYS better to have everyone home.! ~cnp

brief henry update!

Ginger writes:

Platelets more than doubled today from yesterday, although still technically critically low.

Henry tested positive for RSV and the virus that causes Roseola, but my understanding is that doesn’t necessarily explain the extreme drop in platelets. We may be able to go home tomorrow as long as platelets go up tomorrow and the last send out lab comes back as normal.

Henry the kitty

Henry the kitty

Please be praying for a super boost in platelets! The family would so love to have everyone home, this has been an exhausting week in so many ways. Thank you!! ~cnp

Henry update…

again, written by our dear friend anna…

I had a chance to talk with Ginger tonight [last night, 14th] and wanted all of you to know how sweet Henry is doing.

Screen shot 2013-08-15 at 9.57.47 AMHe is feeling MUCH better!  He wants to go home, and of course his parents want him to be able to.  However, there are still a few issues that need to be resolved before that is to happen.   Henry tested positive for a virus that causes Roseola, which will generally clear up on its own unless (as in Henry’s case) there are other complications. Here is how we can continue to pray.

Henry’s heart rate, while he sleeps, is unusually low.  Upper 40′s to lower 50′s.  It is rather strange and they don’t seem to have a definite answer for it other than that he is still sick and is recovering.  We can pray that his heart will begin to work as an active child’s should.  Along these same lines, please pray for Joey and Ginger as they take turns sleeping at the hospital.  I think we all know how difficult it is anyway, but combine that with an alarm going off repeatedly throughout the night due to Henry’s low heart rate and you can imagine how worn out they must be.

hanging out with mama and Mousey

hanging out with mama and Mousey

Another alarming issue is Henry’s low platelet count.  His body seems to be recovering well at this point, but his platelet count is in the 12,000 range.  An acceptable count would be in the neighborhood of 150,000.  But Ginger told me that the last time they did a blood test on Henry when he was well, his count was between 300,000-400,000.  Hopefully those numbers help you to understand how low his count really is.  Again – it is odd that it should still be so low considering his improvement.  Please pray that this number would dramatically jump in the next 24 hours.  He will not be allowed to go home should it remain this way.

Screen shot 2013-08-15 at 9.58.46 AM

So far, the tests that are being run to rule out HLH have been coming back normal.  There is one test still out that checks the NK (Natural Killer) cells – part of white blood cells.  It is rather important that this test come back with normal results.  Ginger was told today that if the results are abnormal, then hematology will recommend that they proceed with Henry as though he has HLH and begin “treatment”.  What they mean by this is that they would start Henry on chemotherapy and radiation and ultimately, a bone marrow transplant. A very drastic response to one test.

That being said, Ginger and Joey are not convinced that an abnormal test result is a absolute that Henry has HLH.  They would have to consult with many other doctors before that – and Henry is doing so well now, that it seems unlikely that  the test would be anything BUT normal.  But we also know that things have not gone “normally” for these boys from the beginning, so please pray for that normal result!

helping the nurse remove the IV tube

helping the nurse remove the IV tube

Caid and Ian

Caid and Ian

Please also remember Caid and Ian at home.  Caid began school this week, so it was a particularly difficult time for the family to be split in so many different ways.  Pray for a spirit of peace upon Caid and Ian as their routine and structure is in a time of upheaval.

Also ask for a huge measure of blessing and grace to be poured out on those that are stepping in to help care for them while Ginger and Joey tend to Henry and work.

Joey and Ginger are concerned that there could be some underlying complication with the boys’ immune systems that has not been found, or cannot be found due to the very little known about HLH.  There seems to be a pattern in their illnesses.  One that would indicate that the same “thing” is being triggered every time, causing the boys to react in the ways that they have every time they become very sick.  If this is the case, and something can be done, please pray for wisdom for these doctors.  That they would be able to see into this disorder, make sense of it, and be able to prevent these situations from becoming what they have.  Each time these boys get sick, it becomes a gut-wrenching guessing game for their parents of what to do, when to do it, am I just being paranoid?  May the Lord give them an abundance of mercy and clarity in these moments.

Screen shot 2013-08-15 at 12.00.38 PM

I know that this is such a well-known and used verse, but each word in it speaks to their trials:

6    Do not be anxious about anything; but in everything, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.  -Phil. 4:6-7

So much anxiety surrounding the well-being of your children, anxiety about whether or not the doctors are doing the right thing, anxiety about whether or not YOU’RE doing the right thing, anxiety about their future.  But by prayer and petition – OUR prayer and petition, on their behalf – with thanksgiving for the lives of these two little boys, we make our request to God.  Knowing that He is able and willing to give a peace that passeth understanding – even when we question what is happening.  Rejoicing that He WILL guard their hearts and minds.

Thank you, to all of you.

In Him,
Anna

Prayers for Henry

I cannot thank you all enough for the prayers on behalf of Ian last month.  As you all know, he is doing very well, receiving continued care and follow-up appointments.

The reason for this post, however, is to let you know that Ian’s twin brother, Henry, has been admitted to the hospital as of last night.  He had been struggling for a couple of days with a fever, vomiting and fatigue that seemed to get worse as time went on.  Joey and Ginger took him in on Sunday evening to be safe.  The doctors are currently running a barrage of tests in hopes to pinpoint if there is anything that they might need to address.

big brother (and mousey) to the rescue

big brother (and mousey) to the rescue

If you are not aware already, Henry has NOT been diagnosed with HLH as Ian was.  They are, however, checking certain “markers” to make sure that what is going on with Henry is not indicative of HLH.  I do know that he was feeling a little bit better this afternoon, but will hopefully know a little bit more about any test results tomorrow.

I know that they count it as precious that each one of you loves them so very much to stand with them in prayer.

~credits to our dear family friend anna for writing this.

happy day

SUPER happy update from Ginger:

“Ian came home this evening, which came as a surprise to us!

Ian has been continuing to improve in energy and has been eating and drinking well. Two nights ago, Ian (and me) got very little sleep because Ian is so afraid and anxious in the hospital that he wanted to be held all the time. I had been holding him in the bed, but they said PICU policy states I can’t be in his bed with him, so I had to be in a chair close to his IV pole, which was impossible to sleep in.

visiting with the brothers yesterday

visiting with the brothers yesterday

Joey stayed the night with Ian last night so I could come home to get a good night’s sleep. Ian ended up crying almost the entire night asking to go home. This morning we asked about taking him home and if it would be possible to do IV antibiotics and antivirals ourselves and they had told us that it probably wasn’t going to work, so we anticipated staying until Monday. But then this afternoon they said we could switch to oral medications and come home.

Ian was so happy and so much more at ease since we have been home.  Thanks to everyone for the love and prayers!”

First bath in almost 2 weeks!

First bath in almost 2 weeks!

Also, we all remembered Gwennie yesterday, as it was her 5th birthday…~cnp

love you, darling girl

love you, darling girl

Tuesday morning

Ginger writes:

Yesterday Ian was very agitated for most of the day with lots of discomfort as his bowels and bladder started to work again. I think he was also agitated from having been on pain medications and sedation for some days and having them turned off.

We have been giving Tylenol to help with his likely sore throat (from the ventilator tube) and we just need him to start with clear fluids. He is refusing so far, but I’m sure as he continues to get better it will happen.

He is extremely traumatized by this hospitalization – this is a difficult age when he is old enough to be afraid and remember that doctors and nurses did things that hurt him, but not old enough to understand why or that a temperature or blood pressure is not going to hurt.

snuggle with dada

snuggle with dada

They removed his arterial line yesterday from his foot and may remove more of his IVs later. He still has a femoral central line and three peripheral IVs. He is done with steroids as of yesterday but is still receiving anti-viral and antibiotics. Another positive note: his platelets came up a little today – not to normal range yet, but today was t he first time they went up instead of dropping! He has been off oxygen since this morning and they plan to transfer us to the general peds floor today out of ICU.

We hope to work with physical therapy to help Ian once he is up for it, since he is very weak.

Waking up…

Ginger writes around 9:00 am:

“Just had rounds. The plan for today is to turn off sedation and pain medication so he can wake up a little more. They will also take an arterial blood gas to check that his oxygen and cO2 levels are good and then they will extubate.

In rounds this morning they said he weighs 8 kilos (17.5 lbs)! His weight before this hospitalization was 10.9 kilos (24 lbs). I could tell he lost weight, but this was a shocking amount to me. He has been getting IV nutrition, but we need to have everything go well so he can get back to eating normally as soon as possible!”

A little later, Ginger sent this picture…

photo

thin & drugged up but successfully extubated

Ginger hopes to be able to hold him soon…