Christmas 2011

Sorry for the silence.  I know some of you aren't on Facebook, but to describe the last couple of days as chaotic would be an understatement.

Noah's condition is changing rapidly in many ways, and it seems that when one problem gets better, we replace it with another one.  Friday afternoon things were extremely grave with both of his lungs filling with fluid and the lasix not working.  We're praising the Lord that we got through that very serious crisis and that we didn't lose Noah on Timothy's birthday.

Things have been a bit of a blur, but I'll do my best to hit the important stuff in a coherent manner.  I've slept very, very little since Thursday and the exhaustion combined with the grief has me feeling like I can barely think at all.

Yesterday Noah's fever went down, his lungs were staying clear, and he woke up enough to play on his iPad a little bit and open a couple of presents.  I really felt sure that he had turned a corner even though the nurse was cautioning me that things could turn back for the worse very quickly.  Sadly, they did start getting worse very shortly after he woke up and have been getting steadily worse since then.  There are little times where he is awake and fairly happy or that his fever goes down a little, but all in all the trend is downward.

As of right now, Noah is still running very high fevers.  His lungs were fluid free as of this morning but he has a tight, severe, painful cough that is getting worse.  He is only truly awake a few hours a day - I think about 4 hours today - and when he is awake he is very confused and disoriented most of the time.  When he is asleep, he frequently wakes up for just a moment to say things that don't make much sense, and he is talking and agitated quite a bit in his sleep.  Last night he thought I was his brother David, and this morning he was clearly hallucinating.  He is fighting SO, SO hard to stay engaged and to live life, but it is just so difficult for him.  When he wakes up, he'll ask to have tons of his favorite toys on his bed but then doesn't know how to play with them.  He'll ask to open a gift, then hold it in his hand for a while before seeming to see it and will ask where it came from (not who it came from, but how it appeared in his hand).

He is very emotionally fragile and is breaking down in very sad heartbreaking tears in his sleep and over the tiniest thing when he is awake.  He fell apart completely tonight when it was time for my parents to go home and he just cried and hugged them for a long time.  I'm very concerned that he is sensing that his time is drawing to a close and that he is having a sort of separation anxiety when it comes to the people and toys that he loves,and I don't know what else to do to help.  We've told him that it is OK for him to go to heaven and that he will not be separated from the people he loves.  (Our chaplain told us something amazing - since there is no night in Heaven, all of Heaven is one day. While we here left behind feel the burden of time and of waiting, from Heaven's perspective we will all arrive on the same day!)  We've assured him that the people he loves will be in Heaven and that we will be OK.  He told me today that Jesus has been coming to see him.  I asked him what Jesus says when He comes, and Noah looked at me like I was nuts and said, "He tells me He loves me, of course."  You can't imagine how comforting that was to me.   I told him that if Jesus ever told Noah to go with Him, that Noah needed to go, and Noah actually did seem a little relieved at that.  Right now this grief he is having is one of my biggest prayer requests for him.  We want him to be at peace and not to have sorrow or fear while he is here, so please please pray to that end.

Oh, and I should mention that no one thinks drugs are to blame for Noah's confusion or mental state.  Any drug changes were made Friday and he didn't manifest any of this until late yesterday, and it's been getting steadily worse.

So where do we really stand with Noah, and where is this going?  Honestly, no one knows.  His vitals are all actually pretty good right now, he's responding to the lasix and making plenty of urine, and his lungs are free from fluid. On the other hand, he's continuing to run high fevers, is confused and delusional at times, has a worsening cough, is still fairly tachy, is still very swollen, and is having increasing bleeding from his gut.  It's not outside the realm of possibility that he will "recover" from this episode.  If that happens, there will almost certainly be significant residual damage and it's not realistic to think that he will get back to the baseline he had a few days ago.  It is also very possible that he will not recover, will take a turn for the worse, and that we will lose him in the next few days.  All I want is for him to feel better, not be sad, and not hurt.  I would love for that to happen here, but understand that it might not.

As far as Christmas goes, I think it is fair to say that Jeff and I went through the motions but the children have had a great day.  We had to tweak and modify our traditions - for example, my mom brought Christmas Eve dinner and Christmas dinner here instead of our going to her house - but we did what we had to do to all be together as a family.  We were so blessed with gifts from others that we let them each open a couple of gifts every other day or so for a few days, then finished up today.  Noah has opened all but a couple of his gifts and is very happy to have them.  It hasn't felt like Christmas to me, to be honest, but I think in some ways that is OK.  I think it is like marriage (or almost anything, really).  Sometimes I feel like I'm in love with Jeff - things are great, lots of romance, and I have that wonderful in-love feeling.  Other times that feeling isn't there, but it doesn't necessarily mean there is a problem.  It could just be that I'm physically or emotionally drained in some way, or we are really busy, or our focus needs to be on something big - but I still love him in that deep, more lasting, not-just-a-feeling way.  I think that was how today was.  I've been a little sad this month because I longed for the "holiday spirit."  I wanted all of the cozy, wonderful, Christmas-y feelings and they just didn't happen . . . but I still love Jesus, know He is with me, have sacrificed when needed to do what is most important for my children and husband, and did all I could to keep things as normal as possible for them while still acknowledging that this was anything but a normal Christmas.  If the warm fuzzy feelings weren't part of the package for me this year, well, that is the least of my worries.  The fact that we were all here together and Noah is where he feels safest and happiest is the most important thing.

That leads me to another specific prayer request.  We are so thankful that we have Noah here at home.  I'll admit that Friday when he was literally in danger of drowning from the fluid in his lungs, I nearly panicked a couple of times and doubted our decision.  When I took a step back though, I realized what a nightmare he'd be put through in the hospital if we'd called 911 at that point, and that there was little to nothing more that they could do to help him.  Having said that, it is a huge responsibility to be providing a very intense level of care for him at home.  He's on TPN, IV fluids, zantac, levocarnitine, dilaudid, methadone, caldolor, keppra, oxybuterol, phenergan, zofran, ativan, tylenol, lasix, rocephin, diflucan, and protonix around the clock.  His central line site needs to be re-dressed more frequently because he is so sweaty at times.  His stomach needs constant cleaning because of the blood and we need to frequently change the bag of drainage from his stomach.  His supra-pubic catheter continues to bleed too and needs to be frequently re-dressed.  His urine output needs to be carefully monitored, and of course there are the basic things like changing his linens when he is sweaty, adjusting him constantly and propping him with pillows to help keep him comfortable, dealing with sometimes almost constant retching, and comforting him when he is scared or sad.  Jeff and I are doing all of this.  The role of the hospice nurses is to come out and evaluate him, assess him and his needs, interface with Dr. B, and help us know what to do next (for example, when they started hearing fluid in his lungs, they called Dr. B and started working on a plan to get lasix.).  They also give me orders as needed such as telling me to go up or down on a medicine and advise me on ways to keep him most comfortable, and communicate with Jeff and I so that we understand where Noah stands at any given time - - but we do all of the daily care.  I'm not looking for a pat on the back, but I am asking for prayer that I won't make any mistakes in my exhaustion.  Relief from the exhaustion would be great but isn't very realistic, so please just pray that I can be alert and attentive and take the best possible care of my precious boy.  Pray also that I'll be sensitive to all of his needs and that I will have great wisdom in both the medical issues and the emotional and spiritual needs of all of my sweet children.

I've been sleeping (or mostly NOT sleeping) in bed with him each night because he wants me to do so and because it's just easier to give him all of his night time meds and cares that way.  Tonight he asked if Matthew would sleep in here on the air mattress.  I've got mixed feelings - I'm a little tiny bit sad that he didn't want me but realize I need to "share" Noah in some ways.  Matthew is really struggling with all of this and it could be that the Lord knows that he needs to be needed in this way - he grinned ear to ear when he found out that he was the "chosen one" LOL.  We'll also have a very sensitive video baby monitor trained on Noah.  I haven't slept in my bed since Wednesday and the rest might be just what I need, but if Noah has another night tonight like he did last night I'll be in here all night anyway.  Best case is that Noah sleeps really well and all I have to do is come in every couple of hours to check his vitals and give meds.  Jeff will take over with the huge barrage of 7 AM meds (we both realize that night nursing is just not his forte) so that I can try for some uninterrupted sleep after I do the 5 AM meds.

Time for more meds, so I'm going to sign off.

Blessings,
Kate
P.S. I forgot to mention that we have been very, very blessed to be surrounded in person and online with people who love Noah, love us, and are praying for us and ministering to us.  During those dark, terrifying hours on Friday we were never, ever alone and the house was filled with people quietly praying and meeting needs.  Those of you who are not local have ministered as will with your prayers and loving comments/emails/messages.  We are forever in your debt.