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. :-)
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.
As of last night, Noah's foot IV was starting to cause considerable pain,so a new IV had to be started. Because the foot IV still flushed, it was not removed. We got his TPN started in the new IV at about 12:30 AM, but by 1:00 AM or so the IV had completely infiltrated. His arm was rock hard from his shoulder to his fingers. Since the foot IV still worked, we tried hooking up the TPN to his foot. This caused him excruciating pain. We went back and forth with the doctors until well after 4 AM trying to get a surgical line but weren't able to get anywhere. Noah can't be without IV hydration so our only options were to use the painful foot IV or try to find another place for an IV.
Since no one could find another place for an IV, and since we weren't able to arrange sedation in PICU in the middle of the night for a surgical line, we had to use that poor little foot. Noah writhed and cried and clawed at his foot until he finally just shut down a little before 5:00 this morning. Even resting quietly his pulse was nearly 170 from the pain, but he was too exhausted to fight and cry any more. I had originally tweeted that the foot IV was shot - it is sad that this very painful IV is his final option. Under any other circumstances the IV would have been pulled, but we can't afford to lose it now.
As soon as he woke up this morning he began crying and writhing again. Since he is scheduled for a new broviac tomorrow, the surgeons aren't willing to do a surgical line today. We've stopped the TPN and are running normal saline very slowly just to keep him from dehydrating too much. This has brought Noah's pain to a tolerable level. If the pain gets to be too much, or if the line stops working, the line will be pulled and Noah just won't have any fluids or nutrition until he goes for surgery tomorrow.
All I'm going to say about this plan is that it is very unsatisfactory. I understand the reasoning at this point, but that doesn't make Noah's pain easier to watch. Noah has suffered so very much over the last 12 days since that first IV was placed, and it is almost more than I can bear. When he finally fell asleep last night I just held him and cried. All along, everything in me has wanted to help make him feel better and I've been completely helpless.
Noah is exhausted from the lack of sleep and the pain. Tomorrow can't possibly come fast enough.
Please pray for pain relief (from the foot IV AND his poor little swollen arm/hand) and for an early slot in the OR tomorrow. I've never looked forward to his having surgery as a good thing, but now I can hardly wait.
Unless a crisis unfolds, I'll try to tweet when he goes for surgery and when he comes back, and will update when I can.
We ended up losing Noah's IV in the middle of the night. The lidocaine did the trick for a while, but after a few hours he was crying and writhing in his sleep. The nurse worked on his foot for a while but could not make it feel better. Within a little while the IV wasn't functioning at all. Noah was wrapped around me crying and when I tried to turn him around his feeding tube got caught on something. It pulled loose from his g-tube but part of it broke off in the g-tube, thereby holding the valve on the g-tube open. (You g and j tube mommies know where I am going with this . . .) All of Noah's stomach contents began spraying wildly out of the open valve, soaking Noah, the bed, my clothes, etc. It upset him to see this, which made him cry harder, which put more pressure on his stomach . . . it was very unpleasant. Once his stomach had emptied, we were able to pull the broken piece out of the g-tube. Of course, Noah needed to be washed and changed, and his poor little foot was so sore that any movement caused him pain. He was also profoundly unhappy that I had to go get cleaned up and changed. He wanted to stay wrapped around me at all times, so I couldn't even tweet.
Once we had dealt with that crisis, we still needed to get an IV into him. He was just very distraught, probably because it was the middle of the night and he just wanted to go back to bed. Three blown veins later, we finally got an IV into a different vein in the same foot. It was particularly unpleasant since his foot was so sore. He could have used some Ativan, but the IV wasn't working at all and we had no way to administer any IV drug. All of the IV attempts had him beside himself, but at least he calmed down once he realized they were finished.
Needless to say, he and I have been really tired today. Jeff and the children came up for a visit, but we had to keep it really low-key. It is always so good to be with them, but I was too tired to be lively and Noah was getting overwhelmed very easily. Other than our visit, Noah has really only wanted to rest in bed or on my lap and watch Peter Pan and Babe.
I have to admit that I'm facing the evening with some trepidation. The nurse just came in to flush and unhook his IV,and he was starting to fuss that it hurt. He wasn't crying but he was complaining for the first time since this IV went in. Up until this point, the IV's have gone within hours of his starting to complain. He's unhooked until TPN time, so I guess we won't know any more until then. I just hope that if we have to replace this IV, that we can do it at TPN time and NOT in the middle of the night. I'm convinced that it was much more difficult last night just because Noah was so exhausted and groggy.
Please keep those IV prayers coming. We need to make it until some time Monday or Tuesday and last night it looked like there were only 2 other possible IV locations left. (He really is black and blue all over!) Given the fact that Noah blows 2-3 veins before getting a working IV, those aren't good numbers. Of course, this isn't a numbers game and none of it is left to fate. God has seen the end from the beginning and none of this is out of His control.
Blessings,
Kate
(Oh, I forgot to say - my friend Corey came up and gave me the biggest hug. She said that she was doing it for all of you who wished you could hug me in person!)
I honestly don't think I can tell you what a world of difference your prayers have made for Noah and I. Noah did have to go to the treatment room for another IV last night, but it was a totally different experience. While he got very upset and did cry and beg for help during the actual "ouchie parts," it wasn't with the same stark terror he has displayed until now. Between attempts he was able to calm down and talk about things. He was even calm enough to sit for the final attempt which did yield a usable IV in his foot. He had to be held so he wouldn't jerk his foot or grab the needle away from the nurse, but before tonight there is no way he could have even been sitting as he would have been thrashing uncontrollably. It was SO clear that even though he was scared and hurting, there was a deep core of peace for him.
All of the nurses were amazed. They kept saying that the whole feeling in the room was totally different and that they were more peaceful as well. I told them that Noah had thousands of people praying for him and they immediately agreed that only prayer could have wrought the results we saw. We need to keep those prayers coming since Noah needs IV access for several days to come.
Foot IV's don't tend to last long, but as of this minute his is still working. He needs to be calm and somewhat still to protect that tenuous line, but God's timing provided blessings in this arena as well. First, my mom was sick this week and couldn't come on Noah's birthday. She came today bearing Mickey Mouse Clubhouse Mega Bloks which Noah played with for hours in bed. Noah also got a financial gift from a blog reader which was to be used for DVD's. I ordered Peter Pan and Babe. Jeff brought them up yesterday and Noah has watched them over and over. Finally, every night I take Noah downstairs in a little cart so he can throw pennies in the fountain. Most evenings we run into the same lady (I think she has a loved one here) who has been quite charmed by Noah. After we throw all of the pennies, Noah likes to browse the windows of the gift shop. This sweet lady saw Noah pleading for an alligator he saw in the window and she insisted on buying it for him as a birthday gift. It's a sweet stuffed gator with a zipper - when the zipper is opened, a lovely soft green blanket can be unfolded from within the gator. It's very snuggly and Noah has been very content to stay in bed with his special alligator blanket! It's really been no challenge to keep him in bed thanks to these blessings.
Noah is still running fevers. The team has decided that as long as he doesn't look sicker, as long as his blood cultures stay negative, and as long as his labs look OK, he will get a new broviac Monday or Tuesday - fever or no fever. We just can't keep resetting the clock every night when Noah is having such access problems. Once we get the broviac in, we will do more investigating as to the source of the fevers. We hope to stop the antibiotics this weekend to rule out a drug fever.
Noah is getting his nightime meds so I need to go snuggle him. Thank you from the bottom of my heart for your prayers. While last night was hard (it did take over an hour again), and while it hurt me to see Noah getting even more bruised and hurt, I felt held. It was so clear that the everlasting arms were beneath both of us. You were there to pray for me when I didn't even know what to say.
***** Noah started crying before I could post this blog. The IV meds are starting to hurt, which usually means the IV won't be working much longer. It is working OK right now, so we are getting some IV lidocaine into him for pain relief before starting his meds again. Please pray that we don't end up with a middle of the night treatment room visit. I would so much prefer to either go before he goes to sleep or in the morning after he is up. Of course, mostly I would prefer not to go at all . . .
Blessings,
Kate
P.S. I've been asked about favorite animals, and I've been remiss in answering. Noah loves all marine life - fish (esp tropical fish), dolphins, sharks, alligators, otters, hippos, etc. He especially loves zebras of course and enjoys most other popular animals like lions, tigers, elephants, farm animals, and dogs. He also likes chipmunks. He is very easy to please. :-)
The past couple of days have been very difficult. I tried to downplay Noah's treatment room visits on his birthday, but in all honesty they represented part of a very vicious cycle. Simply put, we are finding it nearly impossible to keep IV access for Noah. I've tweeted some, but not all, of our treatment room visits. Noah's antibiotics and his "TPN Light" are both very hard on veins, and his IV's are only lasting 8 - 18 hours or so before phlebitis has made them agonizingly painful and impossible to use. He had 2 IV's as of yesterday morning. He lost one in the morning and one in the evening, so he went to the treatment room and got a new one. That one lasted until lunch time today. He got a new one midafternoon today. He needed blood drawn for a blood culture tonight so we were back to the treatment room. Since they needed to access a vein to draw blood, the plan was to put in another IV while they were at it, but they were unable to get one in. They did finally get blood, but no backup IV.
My sparse description is not doing justice to the situation. Noah's veins are very bad. A typcial trip to the treatment room for an IV lasts an hour or more. He has a pretty consistant pattern - the nurses dig and dig and dig to get a vein. Once they get the IV in and tape it down, the vein blows, leaving a very painful bruise on Noah's arm or hand or foot. Every time we go to the treatment room, Noah ends up blowing 2 veins before getting an IV that won't even last 24 hours. He has over a dozen painful bruises all up and down his little hands and feet and arms.
Each time we head to the treatment room Noah starts shaking in terror. The entire hour or more that we are in there he is screaming "Mommy, help me" or "I scared, Mommy," or any of a number of other heartbreaking things. He locks eyes with me and begs me to help him, but I can't. We've done this three times in the last 24 hours. He was so terrified this afternoon that he was given IV ativan to at least make him forget that session. He is starkly terrififed if a nurse even tries to flush his IV or hook up meds to it.
We need to keep IV access until Noah can get a new broviac. He can't get a new broviac until he has been 5 full days with no fever. Tonight would have marked two full days, but he has now spiked a fever of 101.3. (This is why we had to go to the treatment room for a blood culture.) He has reset the clock and is clearly getting sicker. There is no central line to cause a line infection. We have no idea why he has a fever like this.
Noah can't get a PICC line. The veins that are needed are completely shot, and they can't risk any sort of central line while he is still spiking temps. We are almost out of IV locations. Like I said, extremely skilled and capable nurses couldn't get a single IV in an hour of trying. The remaining veins are very deep and they roll. We may have to go to a femoral line as Noah simply can't live without IV access for fluids and nutrition.
I'm usually pretty good at knowing what to say or how to put things in perspective. Tonight I'm speechless. I'm exhausted and I'm homesick and I'm scared and my heart is breaking for my brave little boy. Every bruise on his body is a bruise on my heart. I can't imagine doing this for 5 or more days yet. Last night when we finally left the treatment room, he slept all night like a little koala bear with his arms tight around my neck and his legs tight around my leg. He never relaxed or let go. I'm sitting in bed with him wrapped around me now. I can't cry, but I'm shivering.
I know God is in this somewhere. I know He sees us even if I can't see Him right now. Like Casting Crowns wrote, "I'm not holding on to You, but You're holding on to me." He must be holding me even if I can't feel it. I know He is. Maybe when I'm holding Noah all night, he feels the love of God in my arms. I hope so. I sing Noah a lullaby that says "He'll wipe away your tears by the hand within my hand. The Lord who knows of tears so well must surely understand." I know He understands. I wish I did.
Noah had a really wonderful day today. We hit a rocky patch after I posted - he ended up with 2 trips to the treatment room. They needed to draw some labs from a vein and decided to put in a back-up IV while they were at it. It's a good thing, since it looks like that foot IV might be going.
Once we finished with all that unpleasantness, Noah had a great time with lots of visits and presents and cakes and fun. He did end up spiking a temp,:-( but his labs are looking much better since the line came out.
I spoke at length with one of his doctors this morning and we decided to try some g-tube feeds starting tonight. These are feeds of special baby formula that go through his g-tube directly into his stomach. The feeds will be delivered in a precisely metered dose via a pump similar to an IV pump. We are going to run them only for 10 hours so his gut has 14 hours to rest, and so he isn't hooked up to the pump during waking hours. We are going to start with 2 mls per hour for 10 hours. This is a miniscule amount of formula - less than 1/2 teaspoon per hour. If this works, we will slllooooowwwwllly increase the feeds - maybe 1 ml increase per day. If we could get to 60 mls per hour, that would be 1/2 of Noah's daily calorie requirement. We could cut the amount of TPN in half and decrease the running time so it only ran for 10 hours. Noah would only be hooked up to stuff when he was sleeping.
Honestly, 60 mls an hour is way over the miracle threshold. Before his major gut surgery 2 years ago, he could only tolerate 35 mls per hour. After the surgery he struggled at 17 mls per hour. We may get no where at all with this, but we won't know until we try. Starting g-tube feeds in a child like Noah should be done in the hospital and this seems like as good a time as any to try. If the feeds are still working when we go home, we will continue to increase on schedule until he reaches his limit. We'll stop if he is uncomfortable. When we hit his limit, we will have to decide if he is tolerating enough feeding to justify continuing, or if the amount is too small to bother with.
I truly don't anticipate any trouble with 2 mls per hour tonight. It's just 4 teaspoons total all night, and there is no reason he wouldn't be fine with that. Please just keep the whole process bathed in prayer. We will obviously keep updating on his progress.
NOW, I know I promised pictures. I've got the pictures, but I'm saving the picture post for tomorrow BECAUSE Jeff is getting a bunch of birthday VIDEO edited and uploaded!! When he finishes the videos, I'll do a birthday photo and video post. :-) I think the videos are worth waiting for!!
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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