Henry’s platelets continue to climb, and his NK cell function test was within normal range…So we are going home today!!
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
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.
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
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.
He 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.
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.
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!
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.
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.
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.
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.
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.
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!”
Also, we all remembered Gwennie yesterday, as it was her 5th birthday…~cnp
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.
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.