Crossroads

We are at a bit of a crossroads with Noah.  When you look at him, he "looks" better.  His vitals are decent, and he's awake and alert a few hours a day.   However, his urine cultures indicate that his bladder is very intensely infected with MRSA.

We still believe that this crisis was at least initially caused by the same virus that his siblings had.  His initial labs looked viral, and this would fit with the fact that he's starting to feel better.  Unfortunately, his newest labs look like the MRSA is trying to head into his bloodstream and make him very, very sick.  The improvement we're seeing could be one of two things:

1.  He could be recovering from the virus, we could have caught the MRSA in time, and the high-powered antibiotics we started are effectively beating back the MRSA.

2.  He could very well be sitting in the eye of the storm so to speak.  We could be in a little lull where the virus is abating and the MRSA hasn't yet had time to build up speed and make him terribly ill.

There is really no way to know, and nothing we can do except pray and be thankful that **right now** he's having some short, happy, alert times.  We switched to a very powerful antibiotic once we knew about the MRSA, and there is nothing else we can do medically at this point.

Right now the biggest changes in his labs are worsening liver numbers, worsening kidney numbers, worsening infection markers, and at least one dangerously low blood sugar (so now we are doing finger sticks).  His PT/PTT and platelets are better, he's less swollen, and most of the bleeding is improved.

We've been cautioned to keep in mind that he is just one bacterial surge away from being very gravely ill, and that even if he is on the mend, he's unlikely to return to his previous (poor) baseline.  We know he is in the end stages of his underlying mitochondrial disease, and we know that he could be terribly sick just minutes from now.  (It feels so odd to be writing that, as just a week ago I was blogging about the fact that he could be getting sick, and minutes later he was so very ill.)  We're choosing to try to walk a balanced path - giving thanks for how he feels right now this minute and just enjoying and soaking up every bit of it, but also being mindful to do some things that are important but easy to put off - handprints, memory making, etc.  We've also finalized most of his funeral plans as it will only be harder to make those choices once he has gone home.  Honestly, I feel pretty optimistic right now.  Whenever he starts feeling better, it's easy to be in denial about how quickly things can turn, but I think this is more than denial.  For the first time in a week, I feel hopeful.

I hope I've conveyed this all clearly enough.  It's not time to start celebrating but it's not time to start mourning yet either.  All I can ask from you is what you have all so freely given - your heartfelt prayers for our little guy that he would either fight his way back to us once more or that he would fly to Jesus without suffering.

I'll leave you with this.  Noah's favorite song is "You Never Let Go" as sung by the David Crowder Band.  (Actually, he really loves it as sung by our worship team, but the David Crowder Band version is the song he loves as opposed to a different song of the same title.)  He sings this so often when he is sick or scared, but until last night I've never caught him on tape.  Last night he was awake and resting for a little while and I managed to catch this before he went back to sleep.






Here is the "real" version by the David Crowder Band in case you haven't heard it.  It is so precious to us that the Lord would use this perfect song to minister to Noah.  As Jeff told someone today, Noah doesn't just sing this song, he **lives** it!






Blessings,
Kate

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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.

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Urgent

I'm sitting here in the dark beside Noah's bed just watching him sleep.  Just minutes after posting my last blog post, I walked over to check on him because Hannah said his breathing sounded odd - like he had the hiccups.  He was very hot and when I checked his temp he was running a fever.  Things happened very quickly after that.  I called hospice who called Dr. B.  I drew labs so our nurse could run them to the lab as soon as she got here.  Within minutes both the nurse and Dr. B were here (SO thankful for a pediatrician who will come to our house on a cold rainy night!!!!), antibiotics were ordered, and labs were on the way to the hospital.

Noah is very sick.  At this point, it is a reasonable guess that he has the same virus his siblings have.  Dr. B looked at them and doesn't feel that it is strep b/c the first ones to get sick were better within 2 days.  Of course, last time we thought Noah had the same virus his siblings had, he was septic.  Even if it is "just" the virus, this could be bad.  Noah reacts very, very badly to viruses and some of his worst things have happened in conjunction with viruses, not infections.

Noah's fever is rising rapidly, (103.7 last I checked) and he is swelling visibly with pitting edema all over his body.  The petechiae are worse.  He doesn't look like the same little boy who was laughing and playing this afternoon, and in fact doesn't look like the same child as when Dr. B was here a few hours ago. His hemoglobin is down, platelets down quite a bit, PT/PTT elevated, liver enzymes up just a bit.  He'll probably need lasix in the morning and Dr. B will be calling heme/onc to see if they want him to come in for blood and/or platelets.  I'm not sure how I feel about taking him anywhere with him this sick, so we'll have to see what the morning brings.  His lungs sound OK so far but his belly is very distended from fluid retention so we'll need to watch closely for congestive heart failure or respiratory distress from the fluid.  He's very hard to rouse at this point but he is retching every few minutes.  Fortunately he isn't throwing anything up, probably because he has copious amounts of bile and blood draining from his stomach and there just isn't anything to throw up.  If the retching continues, we'll start IV Ativan in the morning.

Noah's hospice nurse just left but is on call all night if I need her back here for any reason.  She stayed for a few hours to watch his vitals.  He's tachy but his blood pressures are OK.  We increased his fluids almost as soon as we realized he was sick, which is probably helping his blood pressures.  He is still breathing oddly with a hiccup sound every couple of breaths, but all and all he is reasonably stable right now.

A courier will be here in an hour or so about 2 AM) with Noah's antibiotics and some IV ibuprofen.  We'd stopped the Caldolor (ibuprofen) in favor of Toradol, but we are switching back for now for fever control purposes.  I'll hang his meds as soon as they get here. It will take a couple of hours to run them all, then I may try to sleep for a little while.  Matthew is also here sleeping on an air mattress and we have a very sensitive video baby monitor trained on Noah, but I can't think of leaving his side right now.

I am so sad and scared.  I want Noah to have a wonderful Christmas here with us and this is breaking my heart.  Right now I don't think we will lose him before Christmas, but don't know if he will be in any shape to open gifts or celebrate.  This will almost certainly be his last Christmas and for him to be sick and suffering through it is nearly inconceivable - and I can't even consider the idea of his getting worse and not making it.

It's after midnight - it's Timothy's birthday.  Dr. B felt that it would be fine to go to the movie with Timothy with 2 nurses here (1 is his regular nurse who was here tonight plus a NICU nurse), but I feel so torn.  I imagine that by the time I need to make a decision, Noah will be more stable or worse and the decision will be made easier.  I've missed so many birthday celebrations with the children and no matter how understanding they are, it makes me sad.

I don't suppose I even need to ask you all to pray.

Blessings,
Kate

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Sunshine and Rain

I've put off posting because I've taken so many pictures that I want to share . . . then by the time I have a chance to even think about dealing with pictures, I'm too tired to do so.  As is sadly so often the case, if I put off doing happy updates, I get slammed with the need to do a more difficult update.  I'm going to share the difficult stuff first, as much happy stuff as I have time for, and photos soon - I hope!

Our days have been such a mix of sunshine and rain, laughter and tears, hope and heartache.  One minute we are doing something fun and Christmas-y with the children, the next we are sitting down to choose songs for Noah's services.  It's an almost impossible emotional rollercoaster.

Several of Noah's current problems seem to be getting worse.  As I explained this summer, a colonoscopy and endoscopy revealed that Noah's digestive tract is in very bad shape - it oozes blood, and anywhere the cameras touched it, it simply fell apart.  Since his bout with sepsis in early November, that bleeding has progressed to the point that blood is constantly coming out of the drain tube that keeps his stomach drained.  No one is sure how much of this blood is coming from his stomach itself versus his intestines, but it doesn't really matter.  Lately more and more of the blood is bright red (fresh) blood as opposed to the old blood he usually drains.  For the last couple of days, there has been a significant amount of fresh blood constantly oozing out around his g-tube (drain tube).  It was quite a big worse today so Dr. B asked us to go see the surgeon in Greenville in case there was a mechanical, surgical issue.  The good and bad news is that there is no surgical, fixable thing causing the bleeding - it is just a worsening of the bleeding Noah has been having all along,  It is enough that he bleeds through double thicknesses of gauze pads a few times a day - and that is in addition to the blood he is draining.  He is NOT draining huge, emergency-type quantities of blood by any means, but it is increased and significant.

He's also been oozing more blood around his supra-pubic catheter and around his new broviac.  A little blood in these areas isn't necessarily cause for concern, but it's been increasing.  While we were at the surgical office today, I was adjusting Noah's long sleeve shirt after the surgeon looked at his tummy and realized that his arm was covered in petechiae (small red dots caused by burst capillaries).  I was alarmed and showed the surgeon who was also alarmed and began lifting and pulling Noah's clothes only to find that both arms and his chest were covered.  He's also getting them on his face and legs.  When I gave him a lotion rub after his bath this morning I did not notice these, so they would appear to be very new.  I called our hospice nurse who called Dr. B who called me.  He is very concerned that between the petechiae and the increased bleeding from all of Noah's tubes, we are dealing with a platelet/clotting issue.  It's very remotely possible that this could be caused by drugs, and he has Noah's infusion pharmacist going over Noah's meds with a fine toothed comb to be sure we don't have any potentially dangerous combinations.  It is far more likely that Noah is getting sick - possibly getting septic.  He looked great today but doesn't look as good right now - he is sleeping but has a very sad look on his face like he is going to cry in his sleep.  He'll rouse a little bit to look around, still looking sad, then go back to sleep.  We were going to do labs tonight but since it was fairly late when we got home from Greenville, Dr. B said the labs could wait for first thing in the AM.

The bleeding distresses Noah, but does not hurt him.  He has some stomach pain, of course, but all of his pain is pretty well controlled right now.  He's having increased nausea and actually threw up for a couple of hours on Saturday, but we're working on adding to his nausea meds to get that under better control.

Here's where it gets hard for me to write.  Jeff and I and Dr. B and our hospice teams have had some very difficult discussions about how to handle future illnesses with Noah.  Noah has repeatedly expressed the desire to be at home when he goes to Heaven, and has repeatedly expressed a desire to go to Heaven (not in a sad or depressed way, but in a very calm and peaceful way).  The last thing we want to do is to get to a hospital and start a cascade of interventions that can't be stopped and end up with Noah passing away in an ICU away from home.  Our current plan (and we CAN change this any time we want) is to treat any infections/fevers at home.  We'll give Noah the chance to beat the infections with antibiotics, extra fluids, and anything that can be done here.  If he cannot beat the infection, this means that taking him to the hospital would have resulted in that cascade of interventions that we are just no longer willing to put him through.  It is such a mixed blessing having these choices in his hospice program - on one hand, it is great that we can choose to treat at home, but on the other hand it forces us to make so many heart-wrenching decisions. 

We're making every decision prayerfully and on a case-by-case basis, and our biggest litmus test is whether we are doing something to Noah or for Noah.  Last week he was in Greenville twice - once for a transfusion, and once for a new supra-pubic catheter.  The catheter change was literally agonizingly painful and very scary for Noah, but we did it because changing that catheter every 4-6 weeks will greatly reduce the chance of another bladder infection and possible sepsis.  He was incredibly, heartrendingly brave and we were very proud of him.  We were also VERY glad that the urology office is in the process of setting up a sedation room so that in the future he can have some light sedation for catheter changes.  It may not be ready for his next change, but should be after that.  Even though this was invasive and hard, it was fast and safe and could prevent a life-ending infection. 

I say all that to say that those of you who have read this blog for any length of time, or who have children like Noah, are probably wondering why on earth he didn't go to the ER and get admitted.  6 months or a year ago, he would have, but right now we are past that point.  He lost SO much ground and suffered so much with this last infection and we need to honor his wishes and keep him where he is happiest and feels the safest - HOME.  We are all very concerned, and if there is even the tiniest hint of something "off" in his labs, he will be started on antibiotics here at home.

Adding to the concern is the fact that Noah now has significant yeast growing in his gut.  We started IV Diflucan a couple of days ago but I'm frankly very concerned about that yeast getting into his bloodstream.  I'm praying that if yeast is the culprit, we started treatment early enough - on the other hand, if we add antibiotics they will probably make the yeast problem worse.

We also had a difficult talk with hematology a few days ago.  We'd never had it explained to us that the half-life of transfused blood is 21 days at most (in other words, by 21 days, at least half of the transfused cells have died).  Noah is only going 2-3 weeks (usually 2.5 weeks) between transfusions, which means his body is almost certainly totally dependent on those transfused cells.  We knew he was "transfusion dependent" but somehow the numbers made it more real - he survives on the blood we give him, and as it dies, we have to give him more because his body isn't even trying to make enough.  We are continuing to go to heme/onc every two weeks and transfuse as needed because it makes him feel so much better.  If necessary and appropriate, we'll take him in for platelets or more blood if his labs tomorrow indicate the need to do so, but we will do everything possible to handle this on a completely out-patient basis.

I am sure this is all hard to read.  Goodness knows it is hard to write.  I want to say plainly that we need your prayers and support right now.  You may not agree with our decisions, but they are our decisions to make and no parents could have agonized or prayed more about these decisions that we have.  For a long time now we have said that this is Noah's fight, and it is our job to support him.  We could fight to keep him here longer for our sakes, and we could torture him and watch him lose more and more of himself so that we didn't have to say goodbye . . . but we don't think that would be right.  He is so very dear to us, and the very thought of losing him makes me feel like my heart is going to stop and the earth is going to swallow me up . . . but we can't torment him for our own sakes.  I hope this is coming across right, and not as judgmental to those who take a different path with their children.  We aren't giving up on him, or stopping the fight - it is just that by not using every bit of available medical technology (like a ventilator), he will be able to stop fighting when he is ready.  Current medical technology allows people to do so much to prolong life when it would have otherwise stopped - and for someone with an acute illness or injury, that can be a good thing.  When it is prolonging the inevitable at the expense of the patient, it may not be a good thing.  I say all that to say that you are entitled to disagree, but if you haven't been in our shoes, please consider that you are blessed to think about these things in theory only - and please, please keep any negativity to yourself.  No one has been negative, but I don't think my heart could handle a cruel comment right now.

Whew.  OK, happy news time.  We really do have much for which to be thankful:
**Christmas carolers and friends galore who've come by to sing, visit, pray and sit with us.  Now more than ever we cherish the chance to spend time with those who love us, and few things make me smile more than a little time with a friend.  (OK, time with a friend PLUS chocolate and maybe some coffee is even better!)
**Amazing blessings from people who care about us.  I'll try to get the picture up here (it is on Facebook), but the other day a nurse from Noah's infusion pharmacy came over with four HUGE tubs of wrapped gifts for everyone in our family.  They covered our dining room table 2 or 3 deep - and our table seats 16!  We've had packages arriving every day and my children are nearly coming unglued at the sight of presents heaped under the tree and for several feet out all around.  For years we've only done one gift per child, plus one gift from one sibling each - there must be 12-15 things for each of them under that tree!  Honestly, it isn't the "stuff" that has me excited - it is the delirious joy on my children's faces every time something more shows up, and the tangible outpouring of kindness and love symbolized by these bright packages.
**We've been able to maintain a couple of our Christmas time traditions, and had a wonderful day Monday decorating hundreds of cookies with some very, very precious friends.  We all had a great time from Mary Faith through Mommy and I am so thankful. I came so, so close to canceling because I was sad and didn't want to have to try and put on my game face once again.  Then I decided that if I canceled, I'd feel guilty and even MORE sad, so I went ahead and it turns out that before long, I wasn't just acting happy - I was truly having fun with my children and friends.
**Overall, Noah really feels pretty good considering everything.  He sleeps a lot, but is generally happy, affectionate, talkative, and quietly playful when he's awake.  He is such an amazingly sweet little child and truly never complains.  He finds ways to find joy in any situation and is constantly expressing his love and affection to all of us.
**Noah actually lost a tooth!  We are all so happy for something so normal for him, and he is SO cute with that little missing tooth.  He scored pretty big in the Tooth Fairy department (she left him a nice toy), and he had the bright idea to write (dictate) her a very sweet love note the next night in hopes she'd leave something again LOL.  We explained that there was a one-reward per tooth policy, but that she would gladly take notes and pictures any time he left them.  Yesterday one of his good buddies from hospice came by, saw the tooth, and gave me a "gold" Sacajawea dollar for him, so I guess he will score with the next note.  :-)
**Tomorrow is Timothy's 13th birthday, and he will make me the mother of 4 teenagers.  I love my season in life right now with wee little Mary Faith (3 years old), teens, and everything in between.  I've loved every stage my children have gone through, and it really is such a joy to have almost every stage all at the same time.  I am blessed with such wonderful, loving, sweet children and I am thankful for them more than I can say!  For months Timothy has been wanting to go see Tintin (the children are HUGE fans).  Matthew's birthday was the 17th, and several years we've gone to the movies on his birthday - we saw all three Narnia movies on his birthday, and there was another I've forgotten.  Timothy had his heart set on going to see Tintin on HIS birthday, and yesterday Ray (Noah's buddy with the gold coin) from Hospice came by with tickets for the entire family to the 3D showing tomorrow afternoon.  They are all SO excited and can hardly wait.  The only 3D movie they've ever seen was an Imax documentary when we were in Myrtle Beach.  Every time we plan to go see one, something happens and by the time we go, the 3D version has already left and we've settled for the 2D movie.  Hospice also arranged for Ray and 2 nurses to sit here with Noah while we are at the theater, so he will be safe and sound and probably have a great time.  The theater is walking distance from our home if anything goes wrong, but I'm confident that it won't and that we'll be able to have a special day with Timothy.

I need to run now, but I have another prayer request.  The children are passing around a little virus - headache, stuffy nose, sore throat, and one of them had a little fever.  It's just enough that they feel yucky for a day or two.  Please pray that this is stopped in its tracks and that everyone feels GREAT for Timothy's birthday, Christmas Eve, and Christmas.  Sarah is the only one feel yucky now - Mary Faith is still stuffy but seems to feel fine.  Also please pray that this will be kept from Noah!!

If I don't post between now and then, have a blessed Christmas.  You all mean the world to us and we are praying for the Lord's blessing over each and every one of you.

Blessings,
Kate

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Super fast update

Sorry I wasn't able to update while I was gone - I can't update from my phone (grrr - it's an android {google} phone and this is an blogger {google}blog . . . shouldn't they play nicely together??)

We flew home yesterday late in the day.  Thank you for your prayers - I actually slept the entire flight!! Noah had successful surgery for a new dual-lumen central line on Friday and the rest of our time in Winston-Salem was spent working with the pain team getting a solid pain plan in place for Noah.  His pain meds were tweaked and changed and increased CONSIDERABLY.  We left with 2 things we needed.  The first was a plan for going forward from here so Dr. B would know when to increase Noah's meds and how/how much to safely increase.  This is important because we don't have access to the critical-care monitoring that Noah had in the hospital so we needed a balance between agressive enough and safe enough. The second things was a rescue plan which basically means that we now have additional strong doses of IV narcotics in Noah's fridge for us to give if his other pain meds aren't working.  This means that if he's suddenly hurting more, we have the leeway to immediately  hit his pain hard and THEN work on contacting Dr. B to ramp up his regular pain regimen. 

Tomorrow Noah goes to the urologist for what is likely to be a VERY unpleasant appointment.  It is time to have his supra-pubic catheter switched out.  In theory, this shouldn't be a huge deal but Noah screams every time we move that tube at all.  He's OK with us moving his central line and his g-tube, but that catheter seems to really hurt.  He may also have to have some tissue around the tube on his tummy burned off - they burned off a lot when he was in surgery Friday but he needs more.  This is as painful as it sounds.  We'd really appreciate prayers for comfort for him and grace for us.

Thursday he goes to Greenville for a transfusion.  He fell below his transfusion threshold while in W-S but the doctors there wanted his regular hematologists to transfuse him.  We had his labs checked again this morning to be sure he still needed blood and he is still below that threshold.  He hasn't been typed and cross matched for this transfusion yet so it will probably be a loooooong day.

Matthew's birthday is Saturday.  He's having some friends over for fun and lunch, then we are having more friends and family for dinner/cake/presents.  Sunday Hannah's friends that she's in a singing group with are coming over for hot cider and cookies and we'll also have out of town company that day.  Monday we're having friends over to decorate cookies.  We have NO plans after that except to relax until Timothy has his birthday on the 23rd.  :-)

Oh, and Sarah got a hamster and Noah has a loose tooth! 

That pretty much sums it up . . .

Blessings,
Kate

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Update from Hannah Grace

Hi everyone!  This is Kate's daughter Hannah Grace.  Mom wanted me to post real quick and let you know that she and Noah arrived safely in Winston-Salem.  They are in room 610.  Mom is not sure how often she will be able to update the blog, if at all.  However, she will be able to update facebook.  If you are not already friends with her on there, here is the link to her profile so you can friend her. :)

http://www.facebook.com/kate.estes

Thanks for praying!

Blessings in Christ,
~Hannah Grace

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whirlwind

Oh, what a day.

Last night when I put Noah into his jammies, I noticed that there was significant drainage around his new central line.  I called the hospice nurse and we decided that I would clean it well, do a dressing change, and we would get it looked at in the AM.  Since Noah was scheduled for a transfusion this morning in Greenville right next to the surgeon's offices, the plan was for us to head to heme/onc at 7:30 this morning and the nurse would call the surgeon.  We figured that we could either go over to the surgical office while waiting for Noah's blood to come up from the blood bank, or the surgeon could come over and look at Noah in the heme/onc clinic.

Sounded good on paper . . . but the surgical office was simply unwilling to look at the line.  It's not "their" line since it was placed in Winston-Salem.  (Don't get me started  . . .)

While we were still waiting to hear that lovely bit of news, we got a call from the surgeon in W-S who said that she'd seen the photos we'd emailed and that the line needed to be replaced.  She was leaning toward doing it whenever it was convenient for us, but when we told her about the drainage, she decided it needed to be changed ASAP- which, since we're so far away, means Friday AM.


I was popping in and out of Noah's clinic room fielding calls from hospice, the W-S surgeon, and trying to get Angel Flight set up while Jeff was talking to the heme/onc doctors.  They finally got his labs drawn and his hemoglobin was just, just, just barely above the transfusion threshold.  For whatever reason, it didn't drop at its usual rate since we were at heme/onc last Monday.  He will almost certainly need a transfusion either at Brenner's (the children's hospital in Winston Salem) or when he gets back, so we're schedule to go back to heme/onc AGAIN next Monday.  (And I know it would make sense to check his labs here rather than driving 100+ miles round trip to be told he won't be transfused, but they want lab values from their own lab only.)

In the midst of all of this it became clear that the Greenville surgeons weren't going to even look at the oozy bleeding line.  The surgeon from W-S was less than pleased that we couldn't get follow up close to home and everyone felt that the line needed to be looked at, so we arranged to head home and have Dr. B look at the line.

We grabbed some lunch, made a quick stop, and got back to Greenville exactly in time to roll into Dr. B's office @ 3:30.  It was a madhouse and there was quite a wait before we could be seen.  Dr. B ordered blood cultures and IV antibiotics.  We know the cultures will be negative as Noah definitely isn't sick, but we need the negative culture - if we get to Brenner's and Noah is on IV antibiotics for his line, they'll need to treat the line as infected and it would prolong his hospital stay.

We'd hoped to go to W-S first thing Friday morning, but the timing won't work out with his surgical time, so we'll fly there sometime Thursday and be admitted then.

Further complicating the day was a series of phone calls from Noah's infusion pharmacy.  There is a nationwide shortage of IV fentanyl and with Noah's newest rate increase (also ordered by Dr. B this afternoon) Noah only has access to enough fentanyl to get to W-S on Thursday.  Nothing like cutting it close, right?!  We'll need to switch to diloudid in his pain pump, so Dr. B is going to call the Brenner's peds pain team and see if they can make the switch while he is there.  That's one bright spot - it will be safer, easier, and faster to do that on a monitored floor inpatient than it would be at home.

We also needed to discuss a DNR with Dr. B.  As sickening as that was, it needed to be done.  Without one, if Noah's heart stopped while a hospice nurse was here, she would be legally required to attempt resuscitation and call 911.  We're not doing a total blanket DNR but spent time with Dr. B defining which measures (oxygen, for example) are OK and which (chest compressions, for example) are not OK.  It's important to have it all written out, but also important to note that we can verbally request any interventions and they will be done whether they are on the DNR or not.

We got home about 10 minutes before the hospice nurse got here to draw labs and increase the rate on his fentanyl pump.  All in all, it was a really, really long day.  The nurse will be back again first thing in the AM to hang his new bag of fentanyl and do her regular assessment.

Please pray for peace and rest of mind tomorrow - maybe not in the way that you would think.  For me, medical phone calls can be one of the most exhausting and brain-zapping things I deal with.  Days like today where I was fielding seemingly non-stop calls from multiple medical professionals and Angel Flight are just plain hard.  It's a juggling act where one call requests information that requires me to make another call - and wait for that person to call someone else to call me back so I can return the original call.  Yuck.  There will be quite a few calls tomorrow.  We need to get Angel Flight set up which involves Angel Flight, W-S, and Dr. B.  We'll be dealing with our infusion pharmacy to see how long this last bag of fentanyl will last (thereby determining what time we need to leave on Thurs.) and to get some needed supplies.  We need to meet with Dr. B to get the DNR signed so we can take it to W-S . . .  the list goes on.  Please pray that this can be accomplished in the most efficient way possible and that I just have a peaceful, non-harried brain tomorrow.

Jeff and I were speaking at dinner tonight about the goodness of the Lord.  Not too many years ago, a day even 1/4 as crazy as today would have had us stressed out, panicking, and miserable.  Honestly, by the grace of the Lord, we were able to take all of this in stride with no real upset.  There was the undeniable mental stress of juggling it all, but it wasn't manifested in stress-filled behaviors (wait - does it count that I asked Dr. B's nurse if I can be put in a medically induced coma so I can rest?)  :-)  Seriously, He's shown up in so many big and small ways that our ONLY response to all of this was that God had it covered and that while our brains and bodies felt like they were on hamster wheels, our souls could be at rest.

Speaking of rest, I sure could use some and continue to covet your prayers for that.  I get little sleep, and what I do get is almost always very poor.  I'm off to seek some sleep right now!

Blessings,
Kate

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Random Thoughts and Thanks

I feel like I could take a starring role in a Zombie movie right now . . . I'm so tired physically but even more so emotionally.  Today we made a lot of headway in various pre-planning tasks related to Noah's services.  This was SO hard to do, but it won't get easier if we wait . . .

I've been very blessed with several friends coming over this week to help with everything from rearranging the playroom to doing my grocery shopping to peeling and freezing our massive kiwi fruit harvest (betcha that last one doesn't show up on very many "how to help a hurting friend lists" LOL).  I'm learning to be better about relinquishing control and am even letting a friend bake Sarah's birthday cupcakes tomorrow.


I've also been very blessed by so many of YOU - the comments here and on Facebook have been such an encouragement.  I've been touched by so many of you who've shared your own experiences with loss, those of you who have just let us know that you are sorry and are praying, and those of you who have offered sage advice and wise insight.  We consider every bit of it and appreciate it all.

We've been blessed with the gift of some financial help for Noah's funeral and burial.  Several of you mentioned the potentially staggering cost of a casket, and I wanted to let you know that a Christian woodworker in a neighboring town heard of Noah and has actually made him a custom, solid oak casket as a gift.  I haven't seen it, but the hospice social worker brought over pictures of it today.  It is truly lovely and was made with many tears and prayers for our sweet boy. 

Thanks to some organizational help from a friend, we've moved Noah into the playroom.  The older children are taking turns sleeping in there on a nice air mattress (and are actually squabbling over whose turn it is since they all want to sleep there every night!)  Noah seems much more settled and content, and I LOVE being able to sit beside his bed in the rocking chair and hold his hand, read to him, etc., or being able to climb right into bed with him.  (In the boy's room, the bed was against the wall on one side, which meant all of his drains and tubes hung on the other side, leaving no real way to lie down with him.)  The playroom is becoming the focus of the house and when Noah is awake there is almost always a sibling snuggled in bed with him and a couple more scattered around reading quietly.  He's just soaking it all up and loves it.  When he is sleeping, they either sit there quietly or go to the family room.  It's working very well so far!

We have two precious nurses coming to sit with him tomorrow night (he is WAY more than a one-man job right now) so that we can all go to the Connie Maxwell Christmas program after Sarah's birthday dinner.  It's hard to think of leaving him, but this is really important to Sarah and Noah seems pretty pleased at the idea of having two of his "girlfriends" to himself.  :-)

Noah is still struggling with significant pain at times.  He'll start a fentanyl PCA tomorrow.  This is an IV pump that will connect to the TPN lumen of his central line and will drip IV fentanyl around the clock.  If he has breakthrough pain, he can push a button to bolus more medicine - it's programmed so that he can't overdose, of course.  We'll be switching around some other pain meds and probably adding haldol and/or ativan to the mix.

He's getting transfused on Monday (did I mention that last time?)

He's having some trouble with his wonderful new broviac.  Part of the cuff (that holds the line in place and protects against infection) is exposed.  There are two solid stitches still holding the line in place and this is not an emergency right now, but the line may need to be replaced.  It can't be done in Greenville since they don't do dual lumen lines.  We saw the surgeon in Greenville yesterday and he said to follow up with the surgeons in Winston Salem since it was their line.  We aren't about to just zip up to W-S for an outpatient visit, so Dr. B contacted them today and made arrangements for Noah's primary nurse to take pictures and email them to the W-S surgeons tomorrow.  If the line does need to be replaced, we'll probably use Angel Flight to get Noah to W-S.  (Deanna, Crystal, Sandra, Sandra, and Leisl - are you SURE you didn't put him up to this??)

I put this last bit on Facebook too, so forgive me if you see it twice -

I'm embarrassed to have to do this . . . I've had a couple of people contact me wanting to know ideas of things our children might like for Christmas, but I've been so scatter brained and tired (think Zombie Kate) that I've forgotten who asked. They ARE each getting a gift from us and will be happy with what they are getting, but I don't want to ignore anyone who asked this. I honestly can't keep up with who is getting what, so I created a public Google Doc wishlist editable by anyone with the link (so people can mark or delete something if you get it). If you were one of the ones who asked, please just message or email me and I'll send you the link. This is NOT me implying that the children need or are entitled to anything extra - I just feel horrible forgetting to get back to those who asked.

 With much to be thankful for,

Zombie Mama Kate

 

 

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