Dr. B called right before dinner and told me that Noah's labs looked beautiful - beautiful for Noah, that is! (tired gray-haired mama doing the happy dance) We will probably re-draw labs tomorrow because sometimes it takes his labs a little while to catch up with him, but I really think that we are in the clear. One happy bonus of drawing these unscheduled labs is that we were able to see another nice jump up in his hemoglobin even since yesterday! The venofer really seems to be doing the trick for Noah. How refreshing is that?? While we were on the phone I asked Dr. B again about Noah's other issues. He reminded me that Noah was really, really, really sick and was getting massive doses of really, really, really strong drugs, and that we need to give Noah more time. (hmmmmm . . . I'm seeing a pattern here . . . everyone keeps telling me the same thing but I keep asking because I'm hoping for a different answer. Sigh.) We are going to take a "wait and see" approach and give Noah the time he needs to show us what he can do. In the meantime I can cuddle him when he is confused or scared or dizzy, and carry him when it's too hard to walk. I consider it a privilege to be able to do so. (Speaking of cuddling, Noah loves to have me sleep with him when he is in the hospital. He wants to curl right up around me like a koala bear and have his head on my shoulder. Lately he wants me to lie down with him at all sort of odd times of the day when he is weary. He doesn't want to nap but he does want that favorite snuggle position, so he will lie down on my bed, put out his arms, gaze oh-so-deeply into my eyes and say, "Sleep me?" Talk about an offer I can't refuse!)
Noah (and everyone else) thoroughly enjoyed Up. Jeff and I are going to see it tonight. Yeah, that is totally backwards for us as I can't remember the last time the children saw a movie without our screening it first or at least watching with them, but we were given the "all clear" by some very trusted friends and felt that this was a safe movie. We're watching just because we spent the afternoon cracking up at the sound of all of our children laughing so hard and we want to get in on the fun! :-)
Thank you so much for the encouraging comments. Sometimes it seems like there will never be a light at the end of the tunnel. Sometimes I read blogs about kids who are facing serious issues, but they are FIXABLE issues - there may be surgery or treatment or scary things, but there is the real possibility that at the end of the day these children will be utterly whole and healthy and well. I want that chance for Noah and Eithene and Samuel and Gavin and Claire and Rafi and Mathew and Alex and Lauren and Brianna and all of the thousands of beautiful children fighting mito or other severe chronic issues. It is an amazing thing to be able to turn and bury my face under the shadow of God's wing when it all just seems to be too much. Faith is indeed the substance of things hoped for and the evidence of things not seen, and I have faith in a God who is so much bigger than me and so much bigger than mito. I've had to remind myself over and over lately that God has not given us a spirit of fear but of power and of love and of a strong mind. When those sudden icy darts of fear come over me, all I need to do is to remember that they didn't come from the Lord. He isn't afraid for Noah. His plans for Noah are for good. Please pray that we can keep resting in those truths.
I need to kiss Superman goodnight now, and smile and not cry, then get into bed with my super man and laugh at Up. :-) There might even be some peanut butter chocolate ice cream in Jeff's and my future - shhhhhhh . . . .
Blessings,
Kate
ps I listen to Your Hands as suggested. Yep, I shed a few tears too. I'll have to post the video here soon.
Took Noah in to see Dr. B today, and lo and behold Noah decided to pop a fever while he was there. Ugh. It was pretty low-grade, so we came home and Noah's nurse drew labs here at the house. We'll know how they look in a couple of hours and Dr. B will call us with a plan at that point. We discussed Noah's other issues while we were together but didn't really dig in since the focus was on getting these labs and figuring out whether Noah is truly sick.
In the meantime, Noah's temp has gone down and he doesn't look terrible. Doesn't look good either, though. Thanks to the DVD Fairy, a brand-new copy of Up arrived today for the older children. None of them have seen it and Noah is chilling out with them and enjoying it.
I'm not even going to venture a "Mommy Radar" guess on this one. As Jessica pointed out yesterday, there is a sort of post-traumatic stress thing that happens after close calls like the one Noah had so recently. It throws my instincts off completely. All I can say is that he really doesn't look awful and his temp is down.
Right now my focus is on refusing to listen to the voice of fear that says he didn't look awful in the beginning last time either . . . .nope, just not going to listen.
The Lord was gracious and I was able to get about 50 lbs each of ground beef and boneless chicken breasts at half price today so I can restock my freezer with casseroles. I'm not sure I want to dig in and start cooking before I hear back on Noah's labs (that would be a bad project to leave half-finished!!) but I may go mix up some meatloaf to keep myself busy. It's only maybe a 30 minute project so I can finish before I hear from Dr. B.
(Free homemaking tip of the day - freezing meatloaf in bulk is the easiest thing ever. Just make your regular recipe and put into freezer bags without cooking it. Smoosh the bags as flat as possible - it will thaw faster that way - and freeze. When you want to cook meatloaf, thaw a bag, dump the meatloaf in your pan, shape, and bake. It doesn't really take any longer to mix a huge batch of meatloaf than a small one but the payoffs are big when you want an easy dinner!)
Off to cook and pray and believe that Noah is fine this time.
Noah's hem/onc clinic went well today. His hemoglobin is up over a point since he was discharged almost a week ago - that is great news. He has quite a ways to go still, but it looks like we are moving in the right direction with the venofer. He had a venofer infusion today in the day hospital (in the clinic) and will be returning weekly for infusions for a while. The goal is to work him to the point of only one infusion per month.
We are doing this in an effort to get Noah's hemoglobin up and keep it up while reducing the number of transfusions he needs. Noah's anemia is just one small part of the issues he faces, but I have to tell you that it feels GREAT to feel like we are making headway even in one small area!
The only "downside" to the visit is that we now have no explanation for how utterly pitiful Noah looks and feels. He is startlingly pale and often has very little color even in his lips, but has dark circles under his eyes. He has very little energy and even a short time of active play leaves him completely drained. He is also having episodes where it seems hard for him to walk. It's hard to explain what it looks like - almost like he has a major muscle disorder or is walking on a very painful surface. The first time he did it I thought his shoes must be on the wrong feet (we have checked his shoes for fit, comfort, etc.) When he does this, he very quickly asks to be carried. I asked him today if walking made his legs hurt. He said no, that walking makes his legs cold. Any ideas on this?? Another really odd issue is that Noah has become VERY photophobic since this illness. He has always been a little sensitive to light (probably because his pupils often fail to constrict properly), but he wants most of the lights out all of the time. He was very upset the other day because I wouldn't "turn off the sun." He had several episodes of utter hysteria in response to light in the hospital, and while things are easier here (easier to control light levels), it is still clearly an issue.
Noah's current state is such a mixed bag. One one hand, he doesn't look very good at all, but on the other hand he is the picture of radiant health compared to where he was 2 1/2 weeks ago. I KNOW that I need to be patient and remember that Noah was very gravely ill and that he has come a long way in a short time, but it is hard to wait. He needs to get strong so he can stay strong and stay home and healthy for a long time.
I know this probably sounds whiny. I'm incredibly thankful that Noah is doing so well - I really truly am. Just seeing him makes my eyes tear up several times a day. Things could have gone very differently and I don't want to come across as anything other than profoundly thankful that Noah is home . . . yet it's painfully hard to see things like him struggling to walk even though I am immensely grateful that he is walking at all.
We'll be seeing the wonderful Dr. B (Noah's new pediatrician) tomorrow for a hospital follow up. I'm hoping he can offer some guidance on how to get our "old Noah" back. The hematologist feels that this is just the price Noah is paying from being so very, very sick. While that makes sense, I also want to do anything I can to help him feel better.
Thank you to all who visited Eithene and prayed for her yesterday. They were able to get her a functioning broviac (YAY) but she still has a very long way to go, so please keep praying. As some commenters mentioned, Gavin's family needs your prayers. Little Gavin went home to be with the Lord late last night. He was only a few weeks older than Noah and had been fighting mito very hard. His fight is over and he is at peace now. No more mito, no more infections or lines or pain. I hate this disease so much. I can't imagine the pain his parents must be feeling. Praise God that they have the sure hope of spending eternity with their beautiful little boy.
I'll try to blog after our appt. with Dr. B. tomorrow.
Please all take a moment to visit our precious little friend Eithene - http://www.caringbridge.org/visit/eithenerosehilliard . She is Noah's age and is desperately in need of our prayers right now. She had several MAJOR surgeries last week and has had a very rocky road recovering. Her broviac broke and is not working, and this is her LAST available broviac site. Her j-tube (like Noah's g-tube in his tummy) is clogged and can't be replaced for at least 6 weeks due to all of the major abdominal surgeries she just had, AND she is losing an IV that took an hour to place. She is greatly in need of healing, peace, and access - and I know her mom Jessica could use some rest! They are in Children's Hospital in Boston. I don't know if any of you are local and/or if there is anything tangible that this family needs right now, but if you are local it wouldn't hurt to email and offer a hand.
Noah needs some prayers too. Tomorrow we will be heading out EARLY in the morning for Greenville to go to the Hematology/Oncology clinic. Even after 3 IV Venofer infusions, Noah's hemoglobin was extremely low at discharge last week. He was making baby red blood cells, so the docs held off on transfusing him so we could see what he was going to do. He doesn't look like his hemoglobin is up by much. He is very pale and tired and even his lips have lost most of their color. I would LOVE to be guessing wrong on this, but we will find out one way or another tomorrow. If he is responding OK and his hemoglobin is coming up, then he will probably get another Venofer infusion. If these are working, then apparently we'll do this a couple of times a week for a while, then once a week, then eventually once a month.
If he isn't responding, I'm not sure what they will do. They can transfuse in clinic, but I don't know if they can transfuse Noah or would want him in the hospital itself. I keep thinking that surely he must be responding since he was making those baby cells, and that maybe he is just still wiped out from being so sick.
I'll try to update when we get home tomorrow. Please don't forget to visit Eithene and leave a message in her guestbook - and to pray, pray, pray for this precious little one.
So why do I have that Little Orphan Annie song stuck in my head? Can you guess? Yes, we are going home tomorrow!
Noah is still far from 100%. Even after two infusions of Venofer, his hemoglobin is an uninspiring 7.8, which is just very low for him. On the other hand, his reticulocyte count, which measures baby red blood cells, is trending up. This means his bone marrow seems to be trying to "get it in gear" and make more red blood cells. We'll go to the Hematology/Oncology clinic Monday to re-assess whether he needs more Venofer or some blood.
In addition to the hemoglobin issues, his trigycerides are still elevated, and his liver enzymes went back up - but none of these things warrant keeping Noah here any longer.
We are both so ready to be home. Just being home can be such good "medicine," and I'm hoping Noah will perk up and feel better overall in his home setting. Due to influenza precautions, no children 18 or under are allowed to visit. I haven't seen any of my other children for two weeks and Noah and I both really miss them.
In case you missed my tweets yesterday, we finally found out that this illness was NOT H1N1. This is a disappointment, as H1N1 would have been a handy explanation, and it would also mean that Noah had put that behind him already. While we put our trust in the Great Physician, it would be dishonest of me to say that this illness wasn't very frightening and unsettling. My own earthly, finite mind craves an answer and the reassurance that this won't happen again - but we aren't getting those answers this time. There is plenty of speculation, but all anyone can really say is that they don't know why Noah got so sick, they don't know why he got better, and they don't know how likely it is that he will do this again. Ugh. Those are dark thoughts, and Jeff and I are doing our best to focus on the positives: that Noah is doing so incredibly better, that he is coming HOME tomorrow, and that we know the One who does know all of the answers.
Please keep praying for Noah to get better and stronger, for a smooth transition back to home (he is still pretty weak and somewhat irritable), and for a loooooong stretch of health and wellness! If I don't get to update tomorrow, then I will update as soon as I can - I'm planning on being really busy at home doing all of the wife and mommy things that I love so much. :-)
Not much to report from a medical perspective. Most of Noah's labs are either normal or at least showing daily improvement. The two biggest "off" labs are his triglycerides and his hemoglobin. His triglycerides are usually in the 40-50-ish range, but they are continuing to climb with last night's labs showing triglycerides well over 500. Those high numbers are happening even with his lipids (fat portion of his TPN) being reduced, so his lipids are currently discontinued. His hemoglobin has been hanging out at 8.1. Since he usually tires easily with a hemoglobin below 10, this low number is almost certainly at least partly to blame for his severe and persistent fatigue.
As I write, Noah is getting an infusion of Venofer (IV iron) in the hopes of bringing his hemoglobin (and total iron) up. If it doesn't work, another transfusion is the next step.
OK, having gotten the medical news out of the way, how about some Noah news . . . he got to go trick or treating today! Now, our family has never celebrated Halloween, but there was no way I was going to turn down the chance for Noah to get out of his room and have a little fun. There were trick or treating stations all over the 5th and 6th floor, and the children got to stop at each station for all sorts of goodies. Noah raked in playdough, bubbles, stickers, crayons, coloring books, stampers, all sorts of small toys, and more. There were also bags hung outside each child's room and all sorts of volunteers came by throughout the day to fill those bags as well. Even though he rode in a cart, just the business of being out of his room and doing something new REALLY wore him out. He took a long nap and is currently in his bed inspecting all of the loot now that he is more rested.
Noah dressed up as - you guessed it - Superman. Two very generous blog readers each sent him Superman suits after I posted that we couldn't find one locally. It's a good thing he got two, because while he was home he was dressing as Superman every day LOL and it was a blessing to be able to wash one while he wore the other!
The other bright spot for Noah has been that somehow some ladybugs made their way into his room. He's been asking me to catch each one that he sees, then putting them into a plastic tub. He loves to look at them while they are in the tub, but it seems to scare him when they fly, so we finally put one in a little specimen jar so that he could hold and examine it without worrying about it flying away. He has really gotten a lot of pleasure out of these little ladybug encounters and it does me good to see him smiling.
I thought it might do you good to see him smiling too, so I've got some pictures for you. Keep in mind that he had a lot of swelling and his infamous ultra-red eyes and lips several days ago, so his lips and some of the skin on his eyelids have been cracking and peeling - but he looks great considering how sick he was a week ago!!
Take a look at that smile - it might not be a BIG smile, but it IS a smile!!!! Oh, how we were missing that smile!
Sitting with his "ladybug box" and his Daddy
Taking a VERY close look at those ladybugs.
Working up the nerve to actually TOUCH a ladybug!
Here's another smile - can you see the ladybug in the jar?
Noah (errr, Superman) trick-or-treating
All worn out - raking in all those goodies is HARD work!
I think that they are going to start some feeds through his g-tube (feeding that goes into his stomach) tonight. It's just going to be a little bit (a teaspoon per hour) of Pedialyte for now, with the hopes of working back up to some formula over the next few days. Please pray that the feeds go well and that the Venofer can bring his energy level (and smile level) up quickly. Oh, and we are going to be doing a dressing change in a little while using a VERY cool new kind of dressing that the hospital is trialing. I'll let you know how that goes.
Noah continues to bumpity bump along, doing a little better here, a little worse there. Many of his labs are considerably better - his CRP (an indicator of infection which should be 3 or less) was a.most 100 when he was admitted and is now 20-something. His coagulation factors are looking MUCH better (YAY!).
On the other hand, his ferritin was about 70 (normal) 2 weeks ago, then about 1,000 upon admission, and is now over 5,000. We're just seeing lots of strange and inconsistent labs with no clear picture.
The HemOnc (hematology/oncology)doctor are starting to take a more active role as there is increasing suspicion of a bone marrow issue such as a hemophagocytic syndrome. Dr. S from HemOnc ordered some labs yesterday and will be back this evening or tomorrow. Any "next steps" will probably be contingent on the results of those labs.
Noah is really, really, really tired. He can sit and play in bed for a few minutes (and looks pretty good while doing so) but needs to lie down and rest/nap very frequently. He went to bed on time last night (a bit after 9) and slept in until 12:30 this afternoon!
We've been unable to clamp off his g-tube as he has vomiting any time he isn't draining his stomach contents. We're trying again today but gave IV Zofran for nausea right away instead of waiting for him to start throwing up. We'll see where that takes us. It would be great for Noah to stay unhooked - not only would it be an important step toward returning to baseline, but it would be one less tube for him to get tangled in. Right now the little guy is getting (all IV) TPN, lipids, normal saline replacement fluids, D10+K, and 4 IV drugs - 1 via a bag and 3 via syringe pumps. That is a LOT of IV tubing going into one little critter and he is constantly getting tangled up! I sure hope we can cut down on some of those lines before he decides he is ready to get up and get moving.
I'll update when I know more. I kept waiting yesterday for HemOnc to come, thinking I would have more info, but really all he did yesterday was look at Noah and order labs.
Noah has been progressing in most areas - slow progress, but progress none the less. Many of his labs are looking better. His coagulation labs are staying about the same but his platelets are continuing to fall (get worse). His fevers have been very low grade and he has been sitting and playing for very brief periods - maybe 5 or 10 minutes tops - but this is SO much better than he had been doing. They even disconnected the drain from his stomach because he was just draining regular stomach juices.
He seemed more tired today. He was alert and aware, but not really engaging too very much except for some extremely brief periods of playing (most of which was done lying down). He took a 4 hour nap this afternoon, had a sponge bath, then played with the water for quite a while before suddenly announcing that he wanted to sleep. He turned right around and climbed under his very wet blankets and curled up like he was going to sleep. It took a bit of effort to persuade him that we needed to put dry sheets on his bed.
We checked his temp and other vitals because he was acting odd, and they were basically OK with a minimal fever of 100.4 . He stayed curled up in bed sorting of dozing in and out then suddenly began heaving and vomitting. His temp was up to 102.6 and he was looking really rough. The doctor came in and checked him out. Noah's belly has gotten very quiet again, the drain bag is hooked back up, and no one knows why he is looking worse. It's one thing to be getting better without knowing why, but it is another thing altogether to be getting worse and not knowing why.
The doctor said that he will be watching Noah closely and that if Noah gets any worse they will be calling the surgeons back in for another look as well. Right now he is just sleeping.
It is just very hard to see him looking worse when it seemed like we were really on the right track. At this point we don't know if this is just a bump in the road - sort of a last hurrah for whatever has made him ill - or if he has truly taken a turn for the worse. His last turn for the worse was nothing short of terrifying and I'm really concerned about him right now.
Thank you so much for your prayers and comments. Please don't stop praying.
The song below my post ministered to me these past days. I feel as if I don't have very much to say, but this song says a lot.
Noah seems to be turning the corner!! Yesterday evening he truly woke up for the first time in almost 24 hours. He only spoke a little (he did tell me "hi") but was able to lie in bed and look at a DVD!
His fever curve is lower and his labs are all the same or a little better. He has had some awake and alert periods today and has spoken a little more. This is such a huge improvement and I think we are all very relieved and happy to see these signs of progress.
He is still sick and we still don't know what is wrong, but apparently it is getting better. We still don't have the results of the H1N1 swab, and H1N1 complications could explain everything we have seen. He's had two negative flu swabs that weren't the very specific H1N1 swab, but the regular flu swabs give false negatives almost half of the time. The specific swabs have to be sent to a government lab and we don't know how long it will take to get the results. If he has H1N1 it won't change anything but it will provide a "tidy answer" as our infectious disease doctor said.
Noah is still having a really hard time being moved. If we try to adjust his position at all he gets very stiff and flails around trying to grab tightly to anything he can hold. He often says that he is going to fall or that he is falling, even if we are just rolling him on his side in bed. I'm really not sure what to make of that but I figure we can really address it later if it persists after he is feeling better. In the meantime, he isn't up for anything more than lying still in bed. He is having some heaving and retching and sometimes says he is choking if he is too flat for too long. He also had some bleeding from his nose yesterday and early this morning, and the GI doctor said there could be some bleeding from his stomach yesterday, but the bleeding has been pretty minor and should resolve with the plasma on board and his numbers starting to look better.
None of those concerns are really huge in comparison to the relief I feel over his improvements. Last night after Noah really woke up, the Lord gave me a sense of peace and confidence that his labs would look better today and I was able to rest without sorrow or deep worry. I know that Noah must feel very relieved and so much more comfortable without the ultra-high fevers!
I'll update when I can. Noah is having some odd anxieties (decided he is scared of my water mug, for example) and has wanted me to hold his hand most of the day. I have been MORE than happy to oblige and wasn't willing to blog until he was resting and able to let go of my hand.
Please join us in rejoicing and giving thanks for these improvements and please continue to join us in prayer for all of the healing that is still so very needed.
Noah continues to worsen. We still do not know if his gut issues are surgical or if they are the result of a gut shut-down due to serious infection.
I hope I am explaining the rest accurately. We have had a lot of doctors in and out giving us information and it is a lot to process.
We do know that Noah has some sort of very serious infection. We don't know if it is bacterial or viral. We were told he is considered septic at this point but is not in septic shock.
Noah is in DIC. (Definition here ) In a nutshell, his body is producing multiple tiny clots which are using up his ability to clot normally. Even finger sticks are causing difficult to control bleeding. This is extremely serious. His DIC is somewhat mild at this point, but cannot possibly be reversed without treating the underlying infection. He will be receiving fresh frozen platelets soon in an attempt to help him clot. This is NOT a solution. It gives him a short-time improvement in his ability to clot normally, but does not stop the progression of DIC. It is similar to giving tylenol for a fever. It is important to do and does provide some temporary help. More platelets would be needed if Noah began to bleed more or required surgery.
Noah is also experiencing acidosis. (Definition here ) This is not causing serious problems in and of itself at this time, but is another indication that Noah is very, very sick.
Noah did go downstairs for an upper GI w/small bowel followthrough this morning. He was accompanied by one of the peds doctors the entire time because he is so fragile. He tolerated the initial portion of the test and is back in his room where he is getting regular in-room x-rays to monitor the progression of the contrast. He is throwing up a good bit. We don't have answers to that test yet.
Noah is not awake very much, but is having periods where he wakes up and is aware of his surroundings. He isn't really talking except to tell us he is hurting and/or "choking," which is what he says when he is going to throw up. His temps are still in the 104-105 range.
This is all just very serious. I don't know what else to say. He certainly has the hope of recovery, but he is far sicker than he has every been and in ways he has never been. It is so hard for me to see him like this, and it is hard on the staff as well.
I will attempt to update and/or tweet if we learn more.
Noah is very, very sick. Nearly every lab is getting worse in very serious ways. Stool continues to pour out of his g-tube. We can't wake him up. We are going to try to get an upper GI w/ follow through to see what is going on in his gut. The doctors are extremely concerned. This is unlike anything he has ever been through before. He needs prayer so much.
Kate
I have only a moment and will try to fill in details later. Noah is in the Greenville Memorial Children's Hospital. He was admitted to the Abbeville Hospital last night with high, sudden onset fever. He was also vomiting bile. He deteriorated rapidly overnight and was transferred here by ambulance this morning. This came on very suddenly - he had a GREAT day Tuesday.
He is running HIGH (close to 105) fevers in spite of tylenol. He spent the night vomiting bile, and this morning was set up with a drainage bag attached to his g-tube so his stomach contents would drain instead of making him throw up. The contents of his upper intestines are backing up into his stomach and draining out of his g-tube. He has no apparent movement in his intestines. His liver is very enlarged and his liver enzymes are 10 times higher than his normal numbers. He is very, very sick.
It's possible that he has an obstruction of some sort, and we just got up from extensive ultrasounds and some x-rays. He still has a trip to the treatment room ahead of him for a number of things, including lab draws from a vein.
He has been sobbing for a drink on and off all day - pretty much either sobbing or sleeping. He can't have even ice chips because he is clearly not moving anything downwards and because there is the possibility of emergency surgery if he has an obstruction. For the same reason, he can't get motrin or a number of other potentially helpful meds that aren't available IV. He is getting tylenol suppositories but they are only slightly reducing his temp.
I'll try to update or at least tweet when we know more.
OK, we blew it. :-) I've always assured you that if anything happened to Noah, I would find a way to let you know. The bad news is that Noah ended up in the hospital and I couldn't let you know. The good news is that he is home now. :-)
At the request of the doctors in Greenville, we've just switched Noah from our long-time family practice doctor to a pediatrician. There were lots of good reasons for making the switch - our new pediatrician can do a lot more hands-on management of Noah's various issues, AND (this is a biggie) can admit Noah to a local hospital that is just 20 minutes from home - a much more palatable drive than the 1 1/2 hours to Greenville!! There will probably still be times that Noah needs to be in a big hospital like Greenville, but there are also times that he simply needs basic medical support and observation while we rule out a line infection. He can get that care locally now.
Sooo, like I said, we JUST made this switch, and we set up a well-child visit for this past Wednesday. The thinking was that we didn't want Noah's first visit to be when he was sick. Jeff and I had already met extensively with Dr. B and now we all wanted him to see/examine a healthy Noah to get a baseline.
I brought Noah in for that well-child visit, and Enigma Boy did what he does so well - he got sick very quickly while at his well-child visit. Ugh. A few hours later he was admitted to the ICU of Abbeville Hospital. He wasn't really ICU sick at all, but this is a VERY small rural hospital, and the more intense nursing care of an ICU was a good fit with all of the care Noah needs any time he is hospitalized. This hospital doesn't typically get children like Noah, and Dr. B felt that the ICU nurses would be best suited to deal with central line care, TPN, etc.
Noah is just fine, and we got home a couple of hours ago. He had a virus, and while his labs got sort of creepy on Thursday they leveled out today. The entire visit went really well and he received fantastic care. Everyone involved expected that we would have some time to work out any kinks ahead of time - to develop a hospital game plan, so to speak, but Dr. B and the nurses were truly incredible at figuring this all out emergently and getting Noah the best possible care. All of Noah's care was coordinated by phone between Dr. B and any appropriate pediatric sub-specialists in Greenville, so we got all of the advice and wisdom Greenville could offer, superlative care from Dr. B, and the low-key environment and highly personalized TLC of a tiny hospital. From our standpoint, it was a HUGE blessing to be so close to home. It was relatively easy for Jeff to run up and bring me something, and it would have been pretty easy for me to get home for a while if needed (although I didn't since Noah was only in for 2 1/2 days).
So why didn't we let you all know? Well, Abbeville Hospital doesn't have internet in the patient rooms, so I couldn't blog. Jeff did blog faithfully, but, well, ummmm, he forgot how to actually POST his blog posts. He thoughthe was keeping you all updated LOL until I got home and thought I would take a look at what he wrote. Oops. :-)
Like I said above, Noah is looking and doing great. I've got more to update about him later but my own comfy bed is calling me. :-)
It's hard to believe it's been a month since I posted. In some ways, it seems much, much longer. First, let me say that Noah is just fine, has had an uneventful month, and I'll post more about him later.
My silence has been my own. In mid-August, Jeff and I learned (to our utter delight) that the Lord had blessed us and we were expecting another baby. We were beyond happy and were both pleased that I felt so very, very well. We've always been pretty quick to share the good news of a new baby, but this time we we enjoyed just keeping the news to ourselves. It was our own private joy. Eventually we couldn't keep quiet and began gradually sharing our good news with just a few friends and family members. Everything seemed to be going perfectly until I went in for a routine ultrasound at between 10 and 11 weeks and discovered that our baby had died.
I learned that I had experienced what is called a missed miscarriage. Our baby died at a little more than 8 weeks old, but I had no symptoms or signs of a miscarriage. It was a total shock. We were told I could have a D&C or just wait to miscarry the baby myself. We needed to take some time to grieve and pray and weigh our options, and eventually scheduled a D&C which I had a couple of weeks ago.
I regret the fact that so few people new about our baby - that so few were able to celebrate this beautiful life before learning that we were grieving the loss of that life. It was very, very hard in the beginning. On one hand, my feelings were too raw to share in such a public forum, but on the other hand it felt insincere and less than honest to keep blogging as if nothing had happened, so I was silent. I know I worried some of you, and for that I am sorry. I guess no news isn't always good news, BUT if anything happened to Noah I would find a way to let you know.
I can't say I'm over the miscarriage. I don't suppose anyone is every over the loss of a baby. I can say that there are far more smiles than tears now, and that I've moved past sorrow to realize that I was crying for MY loss but not because my baby needs my sorrow. While I sang and spoke words of love to this baby while I could, he or she was never old enough to hear me. A few days after we learned of our loss, it hit me that I can't begin to imagine the first thing he or she saw, or heard, or said. Those little eyes opened for the first time and beheld the glory of heaven, and the first sound heard by those little ears must have been indescribably beautiful. It is so strange to realize that my baby knows more of the glory of God than I do. While I miss my baby and the hopes and dreams I had of our shared lives, my baby hasn't really missed anything by going from here to the arms of Jesus, and that knowledge has brought me unfathomable comfort and peace. This little person never ever knew anything but love.
As I said, there are now far more smiles than there are tears. I don't suppose it is possible not to find reasons to smile in a busy home full of busy little ones. In the interest of keeping those smiles, let me update you a bit on some of my reasons to smile. (Caution: long list of smiles ahead!)
It's a bird, it's a plane . . . It's Super Noah!
Yes, upon turning three, Mr. Noah has been bitten by the Superman bug. For some unfathomable reason, my sons all become superheros right about at three years old, and Noah is no exception. One day he was "Just Noah" and the next day he was trailing a red cape and making fairly convincing whooshing/flying noises. Much to his chagrin, this little caped crusader seems to be without honor in his own country, as our Superman costumes are all in the size 10-12 range. He doesn't seem to mind that his cape drags on the ground or that his sleeves hang far past his hands, but it's hard for the rest of us to keep a straight face when he comes flying by. It's not easy being a very small superhero!
We've been looking for a more suitably sized costume for our pint sized wonder boy, but Superman seems to be out of vogue this year in the Halloween aisles. We haven't quit looking and are hoping that Walmart gets in more costumes before Halloween. He did find a "steel bar" that one of our boys bought a few years ago - it looks like a steel bar but is bendy plastic. He's very impressed with his ability to bend steel with his bare hands and doesn't miss a chance to show us just how strong he is. :-)
Happy Birthday Day Day Day Day . . .
No, I'm not talking about MY birthday, even though as Lynette shared I did turn 40 on the 17th. It's Noah's birthday that's been bringing giggles to the Estes family. He REALLY enjoyed singing and blowing out candles on his birthday last month and just isn't ready to move on yet. The sight of a candle (a frequent sight, since I enjoy candles and have several) or the sight of a brownie or piece of cake (a frequent sight since Hannah and I love to bake, and our church family brought us many lovely meals while I was recovering) inspires Noah to turn on the twinkly eyes and charming grin and ask if he can "Blow up a candle." Is it even possible to refuse a request like that?? I'll light my candle or stick on in our dessert so that all present can sing to Noah. He has his own special dance moves and even his own special tongue twisting lyrics (Happy Birthday Day Day Day Day to you . . .) that get faster as he approaches the coveted goal of enthusiastically blowing out the candle. Before the smoke clears, he's beaming at me again and asking, "Blow up the candle again?" Since he can count to three, we've set a limit of blowing up the candle three times in a row. If he's feeling really benevolent, he'll shout someone else's name at "Happy Birthday Day Day Day Day Dear . . . ." - but he still gets to blow out the candle. This little ritual brings him so much joy, and his joy makes us all happy! (day day day day day)
Cloudy with a chance of pixie dust
Have you ever heard a glum or grouchy person described as always being followed by a thundercloud? Wee Mary Faith is such a steadfastly cheerful child that we've been wracking our brains trying to figure out what sort of cloud must be following her - we finally figured out that it must be pixie dust! Mary Faith is, in a word, delightful. Even though she is a petite little thing, she is perfectly plump with scrumptious little rolls in all the right places. She's got a wonderful belly-first swagger that somehow conveys immense joy and confidence with every step. It's really nearly impossible not to smile or even laugh whenever she rounds the corner. As she makes her way all through the house, she greets everyone she sees with a sparkly smile, often also waving and calling out a delighted, "Hi!" as if she hadn't just seen us all five minutes before. She's just started really playing "mommy" with her baby doll which receives surprisingly tender care from one so young.
The child even has a theme song - the other children all love to sing the old song "Mairsy Doats" and have christened her Mairsy Doatsie. She can't hear music without dancing and we all often sing that song to her for the sheer pleasure of watching her clapping and swaying.
One room schoolhouse
While we do some bit and pieces of schooling all summer, it's always a great feeling to officially start the "new" school year. Things have been going truly wonderfully and I am very thankful for God's grace in allowing me to teach my children. I've put a new twist on some old techniques this year and hope to blog about our homeschool in more detail in a future post.
The boys have added a cute new catchphrase to each school day. We have a long (loonnnngggg) dining room table with benches along the sides. There's a chair at the head and the foot and a chair next to the head and next to the foot. The boys sit at the table (Hannah works at a desk in her room) and I sit at the foot of the table. The chair beside me has always been the "helping chair" where a child must come sit if he needs help with his work. This keeps me from spending hours running circles around our table and keeps the boys from all calling out questions at the same time. (Read: saves my sanity!) If the chair is occupied, anyone else who has a question or needs help needs to move on to the next thing until the helping chair is vacant.
The other day they started their independent work while I was occupied with one of the little ones. When I came in and sat down, one of the boys loudly proclaimed, "The doctor is now in!" I honestly don't know why that was so funny, but it brought the house down. They said it reminded them of Lucy from the Peanuts strip - remember how she would set up that booth with a sign saying "the doctor is in?" At any rate, my arrival is now heralded each day with a chorus of "The doctor is now in!" and a resulting chorus of giggles. If I have to get up for some reason and remember to raise my eyebrows and archly comment that "The doctor is now out," they are tickled to pieces.
Along the same vein, they have apparently developed the ability to place invisible clones in the helping chair. Silly me didn't know that human cloning was so finely perfected! The gist of the clones is that when "the doctor" isn't in or is occupied with something else, the boys will develop a complicated waiting list for who gets the helping chair once it becomes available. It started the other day when I was in my chair but occupied with a phone call. One of the boys stood up and made a move for the helping chair but Timothy very seriously said, "I'm actually in the helping chair. It looks like I'm on the bench but the invisible me is in the chair." OK, tell me the truth - what boy is going to risk sitting on The Invisible Man? It was a stroke of brilliance that allowed Timothy to work at the bench with lots of room to spread out while maintaining first rights to my attention. :-) Unfortunately for Timothy, the other boys rapidly adopted his strategy, so I find myself frequently checking for invisible children when I come to the table.
Hannah has also greeted the school year with gusto. Our budding authoress is planning to participate in NaNoWriMo (the National Novel Writing Month challenge in November) and we're all ready to cheer her on. She has taught me to never give up when faced with a homeschooling challenge - the child who would cry if faced with even the smallest writing assignment has turned into a young lady with a passion for writing and an incredible way with words.
She had a real treat earlier this month - bestselling Christian author Beverly Lewis actually came to our little town to do a booksigning, and Hannah had the chance to meet her. Mrs. Lewis was very kind and graciously took Hannah aside to answer some questions and offer advise regarding Hannah's aspirations of being a published author. The visit inspired Hannah to look toward the day when she would be doing booksignings for her own book!
The Dangerous Book for Tooth Fairies
Earlier this week I showed Sarah (AKA the Tooth Fairy) how to fold and snip a piece of paper to make a 6 page booklet with no staples or tape. She was charmed and brought me several colors of construction paper to be transformed into little books. She selected a bright red volume and set about illustrating it very seriously, hiding her work from all passers-by. Apparently she had taken notice of our copy of The Dangerous Book For Boys without understanding what the book was about, because she titled her tome "Sarah's Dangerous Book."
While I was in the kitchen, I overheard her telling Jeff about her book. "It's a very, very, VERY dangerous book," she firmly pronounced. "If you even look at it, you will DIE!"
I wasn't sure I wanted her going around saying that, so I immediately called out, "Sarah," in the Universal Mommy Warning Voice. Without missing a beat she continued, "Make that very badly HURT." (Death by paper cut??)
The Tooth Fairy is a force to be reckoned with.
I've done all the catching up I can for one night - and I'm sure you've done all the reading you care to do in one post!! Thank you for praying for us when you didn't even know how to pray. We covet your continued prayers.
We got home last night too late for me to post. The surgery went fine but Noah was in a good bit of pain. After all, he had a broviac put in, taken out, and a new one put in all in the same place in just one week. He was clingy enough that I couldn't blog, but do remember that I can almost always tweet and you can see the tweets in the right hand margin of the blog. No email updates go out for tweets, but if you are ever really hungry for news you can check the blog for tweets. :-)
The decision to go home was sort of a last-minute one. Noah perked up after getting some morphine, his line was working, and he was perfectly stable. No TPN had been ordered for him, so staying in the hospital would have meant another night of just glucose. We had TPN at home so it just seemed best to bring him home and get him on full nutrition, and boy were we glad to go home. This was his shortest stay ever, and it was only so short because SO MANY people were willing to go above and beyond to expedite things for Noah. It is such a blessing to have so many truly brilliant medical professionals who all have Noah's best interests at heart and who are willing to do whatever he needs.
Today was great. I spent it just really enjoying the children. I took Sarah, David, and Timothy (the younger bunch) out for the rare treat of a Happy Meal - they have Lego Racers for the boys and really nifty American Girl kits for the girls. Of course I got a girl meal so Sarah could have 2 toys LOL. I tried out a new brownie recipe with a bunch of them and spent a LOT of time rocking Noah and Mary Faith and singing to them. I had them both on my lap at one point, and had a head on each shoulder. Sarah walked by and stopped to look for a minute, then sighed and said, "You are SO lucky! You get TWO babies! I wish I could be you!!" It was just really adorable. :-)
While things were great overall, there were two little rain clouds on the horizon. Mary Faith seemed really warm to me when I got home last night, and sure enough this morning she was running a high temp. I took her right in to our doctor hoping that it was something non-contagious like an ear infection. Nope. It's just one of those non-specific but contagious viral bugs - you know, the kind that Noah can't afford to get. The poor little thing has had fevers over 104, but she perks right up when her temp goes down with medicine. All she needs are fever meds, lots of drinks, and galores of snuggles - but if Noah pops a temp like that we will be right back in the hospital, so please pray that he is protected - in fact, that we all are!!
The second little cloud is Noah's new line. As much as I hate to say it, we absolutely battled that thing tonight and came within an inch of going back to the hospital. When it was time to start his whole TPN routine, we had to draw from the line - the last thing to go in each day is pure ethanol, and we need to pull it out before we start putting things in. Well, the line would not draw AT ALL. Not even a smidgen. We called our nurse who suggested lots of position changes, non of which worked. She then suggested trying to push in some heparin. I got it in, but only by pushing so hard that it really hurt my hand. We locked that heparin in the line, then a few minutes later I was able to flush in more heparin with ease. Problem solved, at least for now. The big issue is that lines are usually locked with heparin so they won't clot. Noah's line is locked with ethanol which is crucial in helping fight line infections. Some lines are really tempermental, and we are praying that this line can tolerate the heparin locks without clotting issues. We sure would appreciate your prayers along those lines. (OK, I honestly did NOT mean to make a pun there - sorry!)
Everyone is finally settled for good, and our Peanut Chicken is minutes away from being ready, so I am going to go have my long-awaited date night with Jeff.
I've got some great news - a broviac has been located and delivered to the hospital! Noah will be going to surgery tomorrow to have the old line removed and the new line put in.
Many of you asked why simply getting a broviac delivered wasn't one of the options that I listed. It was everyone's first choice, but the hospital hadn't been successful in convincing any other hospitals to send off one of their broviacs. I'm not sure if it was a money thing, or a policy thing, or what. At any rate, it became clear that just getting a broviac sent here didn't seem to be an option. Infectious disease wasn't comfortable with a port or a PICC, so as of mid-morning the plan was to send Noah to Columbia. Columbia had the broviacs, and while they weren't willing to send one here, they were willing to accept Noah as a patient and do the broviac placement surgery on him.
In a last-ditch attempt to get a broviac here, Noah's surgeon asked his charge nurse to call other OR charge nurses at children's hospitals all over South Carolina and North Carolina. The hope was that if we couldn't get a broviac using regular hospital-to-hospital channels, maybe the nurses could make it happen. (I love nurses!)
When the surgeon came out of surgery this afternoon, his nurse told him that he had a present at the desk . . . . it was a broviac!!! I'm not sure which hospital sent it, but we have it!!! We're all concerned about the possibility of infection from the damaged line, and concerned about keeping Noah's IV (so far, so good, by the way), so the surgeon is going to do Noah's surgery tomorrow - very unusual to do this on a Sunday. This is a Level One trauma center with a greatly reduced staff on weekends, so it is rare for non-trauma or non-emergent surgeries to be done on weekends.
I am just so blessed at how the Lord has worked through this whole crazy situation, and at how faithful and diligent all of Noah's team has been. They have all gone the extra mile to be certain that Noah had the best possible outcome.
The big prayer requests are for safety for Noah during surgery, and for that line to work. It's not unheard of for something to happen during surgery to require the use of a second line, but we only have the one. If something did happen to the line, Noah would end up with another neonatal line, which none of us want. Also, Noah has been VERY draggy all day. He has stayed in bed all day. Most of the time he hasn't even been interested in sitting up, and hasn't even asked for toys. I finally went and got some things from the playroom, and he sat up to play for a while then wanted to lie down again. His hemoglobin was checked last night and was much higher than it had been on Thursday - the difference is so large that I think someone's machines need calibration. I have to assume the numbers here are the accurate ones even though Noah's behavior and exhaustion make it look like the lower numbers we got at the doctor's office are the accurate ones. At any rate, there is no way he will get a transfusion if the numbers here look good. It would just be nice if we knew why Noah is so listless. It's the kind of thing that sets off alarm bells for me, but we can't see any reason for this right now.
I'll try to tweet when we're going down to surgery tomorrow (don't have a time right now) and when he gets back.
Noah's broviac is, as I had guessed, un-fixable. We don't know why or how it came apart the way that it did - in fact, the doctors keep saying that they have never seen anything like this before. (Leave it to Noah!)
As discouraging and sad as it is to lose a central line after just 3 1/2 days, I figured we would come in, start an IV, pull the line, and get a new broviac. Nope. In a twist that would make Hollyworld screenwriters proud, there is a national shortage of broviacs. The hospital only has neonatal sized lines (like the teensy one in Noah) and all of the others are on backorder.
How surreal is this? How does something like this happen?? Wouldn't you think that demand for central lines would be pretty stable and predictable? It's not like broviacs are the hot new Christmas toy and manufacturers just can't keep up! Jeff used to work in management in a manufacturing environment and is utterly baffled by this as well - how on earth do manufacturers of central lines just fail to make enough?
The amazing doctors here have been working very hard and brainstorming and researching what to do for Noah. It looks like there are three options:
1) Put in a port instead of a broviac. This is a central line that does not stick out of the skin and has to be accessed with a needle. These are usually used for things like chemo, but not usually used in situations like Noah's where it would be accessed all of the time for TPN.
2) Try to hold off until the hospital can get a more appropriately sized broviac in stock. This would probably mean a PICC line. Noah sustained a lot of damage to his blood vessels during his last visit and I'm not sure that they could even get a PICC line in (this was a matter of discussion a few last week) - plus there is concern that scarring from a PICC would make a future AV Fistula harder to place.
3) Find another hospital that still has larger broviacs in stock and transport Noah by ambulance to have his surgery there.
This whole thing seems just incredible to me. I'm just thankful beyond words for our team here and all that they are doing to figure out the best plan for Noah. It is such a blessing that they were able to start formulating plans even late on a Friday night. I'm not sure when we will know which route we'll be taking, but I will update when we have information.
Please pray for wisdom for the right plan (each has very real pros and cons) and for safety in carrying out the plan. Also please pray for his new IV to hold as long as possible. It was truly heartbreaking to have to take Noah back in to the treatment room for another IV last night, and I am thankful for Noah's loving and skilled nurses.
***Please take a minute to visit Eithene's blog (link on the right) to pray for her and leave a comment. Sweet little Eithene is in the hospital even more than Noah is, and is really having a hard time right now. This whole family is very precious and needs your prayers for Eithene to feel better and for her dad Sean to find a teaching job in the next couple of weeks.
Noah's broviac has somehow come apart. It has an inner core and an outer core. Think of this like a pencil with the lead inside of it. The inner core has slid out of the outer core - as if the lead were sliding out of the pencil. The end of the broviac is still attached to the inner core that slid out - as if the eraser of a pencil were still attached to the lead, but the lead had slid halfway out of the pencil.
Sooo, we have the outer core (wooden pencil part) coming out of his chest, and several inches of inner core (lead) that has slid out of the outer core, with the broviac end attched to the end of the inner core. (I'm not sure I'm making a bit of sense here.)
I have NO idea how this happened. He hasn't taken a fall, or pulled his line, or anything. There is no blood on his chest where the line goes in, and his dressing is perfectly intact.
I called our nurse as soon as I saw this (was changing his diaper and realized his line was much longer than it was this morning!). She had me see if I could pull blood back out of his line. This is a good way to see if the line is still in place inside Noah. A couple of drops came out, then I couldn't pull any more out. This is bad for two reasons - first, it means the line doesn't work. Second, because it doesn't work, it is dangerous for me to try to flush anything through the line (since we don't know where the end of the line is inside Noah). As a result, the inner line is filled with blood which will clot off VERY fast, foiling any possible attempt to fix the line.
Our nurse has a call into our surgeon, and we are waiting to hear if we need to go to the hospital, surgical office, or ER. Jeff is getting Mary Faith down for a nap (Daddy's girl!), and we are just going to head out as soon as he is through. Our nurse will call us on the road to direct our path - all of the options are over an hour away in the same direction, so if we head out now we will at least be partway there when we find out where to go.
In other Noah news, Noah's hemoglobin has dropped below his transfusion threshold. I asked to have it checked before discharge, but got this reply - "We don't want to have to transfuse Noah since he could have a transfusion reaction, so we aren't going to check his hemoglobin. If we checked it and is was low, we would have to transfuse, so we just won't check it. Have your own doctor check it at home." Well, yesterday our doctor did check it, and it is low. Our doctor said we could stay home for the weekend, recheck on Monday, and then go in for a transfusion if it was still low. Guess maybe we won't be waiting now.
It doesn't seem that there is any way to repair the line. Broviac repairs involve cutting off the damaged part of the line, then splicing on a new end - but there is no damaged part (like a hole) to cut off. The whole thing has come apart. If they need to replace it, it will be VERY EASY and pain-free to pull the line since it is so new, BUT we probably couldn't get a new one before Monday. That means more IV's.
I'm just ill over this. I believe strongly that if this line is ruined, God has allowed it to happen for Noah's greater good - perhaps to spare him from some more disastrous and dangerous way. It's also a really tiny (infant size) line - maybe this is the Lord's way of getting him a more appropriate sized line. (No, we don't know why he got such a teensy line. No one could explain this to us.)
I'll update when I know what is going on, or when we are settled either back at home or in the hospital.
Please pray for wisdom, for safety, that we won't be stuck sitting in the ER, that Noah will be spared from as much trauma and pain as possible, and for these weary, weary little ones at home. Jeff and I are awfully weary as well.
I'm doing the happy dance. To be specific, I'm doing the "Dance Happily While PACKING to go HOME" dance. :-) I really, really, really didn't want to stay here any longer, and no one could come up with a reason why we actually HAD to stay - so we are busting out of here! The hold-up would have been making all of the arrangements for the new g-tube feeds, but since he isn't getting any significant amount of fluids or nutrition or anything from the g-tube feeds, we are just going to skip them tonight and get set up for them tomorrow. He's getting less than a tablespoon per hour for 10 hours, and he has a LONG way to go before the feeds would be enough for them to change his TPN recipe. In other words, he is getting everything from TPN and any little g-tube feeds are extra. We don't know if he will get far enough to influence his TPN, but for now it is worth a try.
I was asked about whether Noah might do better with j-tube(direct to intestines) feeds. It is an excellent question. 2 years ago we tried to convert his g-tube to a g-j- tube. It was during that surgery that we learned that something was very wrong with Noah's anatomy, and two days later he had major gut surgery. Many attempts have been made to do a g-j-tube, but Noah apparently has some reverse motility because within 24 hours the j (intestinal) portion of the tube will just back up into his stomach. Noah isn't really a candidate for an actual j-tube (j only) because of his still-abnormal gut anatomy. (Some of you remember Noah being medflighted to CHOP in Philly a couple of years ago. The purpose of that visit was to try anything possible to make some sort of j-tube feeds work so that Noah wouldn't go home on TPN. Obviously, nothing worked.)
Off to finish PACKING!!!!! Please pray for a smooth transition to home.
Noah's surgery went well. We have a broviac and NO MORE IV!!! He wasn't going to go down until mid-afternoon, but a slot opened up this morning and he was able to go down at about 9:45 or 10:00 this morning. He was pretty miserable in recovery and in the room until he took a nap at 3:00. He woke up sore and groggy, but feeling much better. He's in bed coloring pictures right now. :-)
He'll be getting full TPN tonight. He's lost weight and I can see his ribs. I'm so glad that we can get his nutrition back on track. This has been a long road. He's pretty weak and not willing to try to stand or walk, but I think he will feel a lot better tomorrow.
If all goes well, we may be heading home on Wednesday!
I'll post more tomorrow. I'm very, very happy but also very, very tired.
Take a look at our sometimes crazy but always blessed life as we homeschool our eight children, run a homeschool business, and serve God as He leads us. You can also follow our baby Noah as he struggles with some serious health issues - we covet your prayers for him.
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