Noah is still home, still stable, and doing well. We're still having to spend every Monday at the hem/onc clinic, but hope to start spacing those visits out soon. We can't do the venofer infusions at home, but are hoping to start having our home nurse draw the hem/onc labs at home then fax them to the clinic so that we don't have to go to clinic if Noah doesn't need an infusion that week.
Since there isn't much going on in the Noah arena (YAY), I thought I would share a little about what our family will be doing this Christmas season. I shared a little of this last year, but it was later in December and a number of readers wished they had heard these ideas early enough to incorporate them. I can't wait for the joy and blessings that we enjoy together every Advent, and hope that some of these ideas bless you!
ADVENT TRADITIONS
We love traditions. Doing some of the same things every year at the same time builds memories and gives children a strong sense of family. It also reduces stress since we aren't having to try to come up with something new - we just know that our family does so-and-so at certain times most years. We especially enjoy our Christmas traditions. They help us slow down and focus on Advent for an entire month instead of rushing around with "gift time" as the focus. Here are some of our favorite traditions. 1. Watching the Advent Calendar DVD. This is a fun DVD with a short segment for each day of Advent. Each segment teaches about the history of one Christmas tradition. Some are secular (the story behind Rudolph) and others are religious, but none are offensive. The children scamper to get ready for bed and get the dishes done so that we can watch this each night. (Here is the link to the DVD we watch. I just noticed that there is now a "volume 2," which we have not seen.) 2. Advent calendars. After watching our DVD, we open the appropriate section of one or more advent calendars. Some years we have one candy-filled calendar per child, other years they share and take turns. I try to buy a non-candy calendar such as a lego calendar during after-Christmas sales. My mom bought them a very cute Playmobil advent calendar this year. 3. Carol singing/prayer time. After the DVD and the calendars, we make sure everyone is totally ready for bed, then we gather at the table. We turn off most of the lights in the house and light candles at the table. We sing one or two Christmas carols/hymns, and some years Jeff reads some sort of devotional or reads from a Christmas book. When we are through, Jeff goes around the table and prays for each child, then they quietly go off to bed. I LOVE this tradition. There is something very peaceful about the candlelight and the singing, and the children seem to settle in bed so much better because of the quietness. Some years we do a traditional Advent wreath and other years we've just lit an assortment of candles. This year Jeff is going to be reading from The Jesse Tree (link here) each night. We got it last year and accidentally packed it away in our ornament boxes after we decorated the tree LOL. We looked high and low for it and didn't find it until after Christmas! 4. Secret Santas. Every year on Thanksgiving, the children each draw the name of one sibling. These "secret santa" assignments are kept very hush-hush and provide a lot of happy plotting. Each child buys a Christmas gift for their chosen sibling, and also tries to get away with other little surprises without giving away their identity. (Surprises might include a little note, a little treat left on the bed, doing one of the sibling's chores, etc.) They also pray especially for their chosen sibling through the month. 5. Looking at lights. Last year when Noah was sick a lot leading up to December, we asked the children which traditions were most important to them. I wanted to be sure to focus on the things that they treasured most. I was surprised that most of them listed this as one of their top favorite activities! It's as simple as can be - I make a big pot of hot chocolate, pour it into disposable coffee cups, and we all pile into the car. We crank up some Christmas music and drive around looking at Christmas lights. That's it! Nothing fancy and no real expense, but they love it. :-) I put the littles in their pj's so that the rest of our evening goes smoothly when we get home. 6. Cookie party. Each year we spend one single day decorating Christmas cookies, and we usually invite others to share the fun. I make the dough the night before, then get right up to roll, cut, and bake the cookies. I put frosting in ziplock bags and either just snip the corners off or put decorating tips on the bags, and I put out bowls of various candies and decorations. Each child has a large sheet of waxed paper as a work surface (cuts down on mess) and they have a blast decorating, laughing, listening to Christmas music, and (of course) sampling! We often have a fun, simple dinner like pizza that night and do something special like watching a Christmas movie or playing games while eating some of the cookies. While I truly love to bake treats from scratch, the important thing here is the time spent together and the memories made, so don't feel guilty if your cookies come from a package and your frosting from a tub!! (SECRET MOM TIP: You might be wondering why on earth we invite more people - aren't eight children enough? Here's my secret . . . if I invite others to come, I'm committed to the project. If I don't invite others, it's easy to get tired or behind on housework or whatever and just not get around to doing this. Since this is something our children treasure, I build in a fail-safe to be sure it happens. Remember -accountability is your friend LOL) 7. Decorating. We usually get our tree the Saturday after Thanksgiving, and we've built in lots of rituals and traditions there. We have a local tree farm down the road that offers free hayrides, a petting zoo, and all sorts of other festivities. We head there, enjoy the fun stuff, and buy an ornament or wreath or something. Since we don't buy our tree there, we feel like we should buy something to express our thanks for the fun they provided our family. We then head to a local tree lot that donates all of their proceeds to charity, and we get our tree there. This involves a great deal of debate and voting (and lots of playing hide-and-seek among the trees LOL) with each child hoping that his or her pick will end up being the "perfect tree." Each child receives a Christmas ornament each year, so decorating the tree brings back lots of memories and laughter as we talk about why a child got a certain ornament when he or she was younger. We also do some simple decorating around the house. (SECRET MOM TIP: Putting out some simple decorations is the best "clean up" strategy I know. Our house stays nicer looking during Advent because the children know they have to clean up really well before we decorate, and they aren't going to dump "stuff' on surfaces that hold decorations.) We often invite the grandparents to join us for our tree decorating time. 8. Reading by the fire. Over the years we've collected a box of books that we only pull out at Christmas. We try to take some quiet time in the afternoon to light a fire and sit and aloud. Other years we just pick a really good book (like The Lion, the Witch, and the Wardrobe) that is a great read but not Christmas-y. 9. Family room picnic dinner. One night each December, Jeff and I will pick up a bunch of fun, snacky things for dinner and will serve dinner in the family room - usually with a movie. Favorites include clementine sections, meat/cheese/crackers, popcorn (maybe with special seasoning), sparkling grape juice, nuts, etc. Dessert that night is always s'mores with marshmallows we roasted in the fireplace. This is another one of those simple, inexpensive things that we all just love! 10. Crafts or hands-on projects as time, money, and busyness allow. I wanted to make a Jesse tree with the children last year, but it would have meant a level of stress that I wasn't willing to accept. Maybe we'll do it this year. Some years we make lots of homemade gifts for family and friends, and some years we just make cards. Oriental Trading is a good source for inexpensive craft kits that are generally packaged by the dozen - if you don't have a big family, go in on a couple of packages with a couple of other families and divide everything up. We've used these for homemade gifts or just for a fun afternoon activity. Lots of prayer is the key here to know what is right for your family this year. 11. Sharing with others. Again, this varies by year to year, but we always try to put an emphasis on serving those who are less fortunate than ourselves. We've found that if we pray and are sensitive to the Spirit, the Lord will impress the right opportunity on our hearts. We've done things like Angel Tree (waaay more meaningful if you can sign up to help deliver the gifts, btw), Operation Christmas child, making blankets for needy children, we decorating placemats for Meals on Wheels or making and taking gifts to a nursing home - it all just depends on our season of life that year.
What we DON'T do during Advent is run around to parties and activities. We almost always turn down invitations to outside activities during December. Our focus is on lots of shared activities WITHOUT stress. This is a season of joy and blessing for us, and if any activity is going to rob us of our joy, then we don't do it. It's that simple. We put a really high priority on being together as a family and having peaceful days. This is especially important during Advent and we hope it's sending our children the message that this season is about so much more than gifts, materialism, and the rushed madness that seems to be the norm this time of year. Children really truly don't need expensive, elaborate, busy Decembers. It's surprising how much they cherish little things like the treat of some eggnog after dinner, a special dessert, the surprise of hot chocolate, cookies, and a read-aloud in the middle of the afternoon "just because," and so forth - and a calm, unstressed mama who has time to snuggle is far more
precious to children than anything money can buy!!
It's also important to take extra time with your husband during Advent. Consider his needs and be sure to incorporate any traditions that he finds important. Jeff and I have a weekly date night, but during Advent we try to find time for more mini-dates too - even just sitting in front of the fire with some cocoa for a little while after the children are in bed. Take extra time to pray for him during this season. It's easy to feel like we mamas can get overworked during Advent, but don't forget that your husband may be feeling extra pressure due to extended family dynamics, finances, etc.
GIFTS
When it comes to finances during Christmas, we learned have learned how to abound and now we are learning how to be abased. Whether we had lots of money to spend or not, we realized long ago that it was easy to get overwhelmed with STUFF during December. Three of our children have birthdays in December - add that to Christmas gifts for 8 children and you are talking about a boatload of toys and games and so forth. Several years ago we decided to give just one really nice gift to each child, plus a really nicely loaded stocking. They also each get a gift from their Secret Santa Sibling, and we also often give several multi-child gifts, such as a game or DVD - things that multiple children can enjoy together and that don't belong to any one person. Since our children have very generous grandparents, we've encouraged the grandparents to focus on things like swim lessons rather than tons of toys. (Other non-stuff ideas are zoo memberships and museum memberships, or a joint family item like swing set.)
Now I'll be honest here. I'm not sure that we'll be buying much of anything for the children this year, including a tree. The money just simply isn't there . . . but that is OK. It is really and truly fine. I'm sharing this because I want to encourage others out there who are experiencing serious financial issues this year, but I am NOT sharing it to garner sympathy. Like I said, Jeff and I don't see this as a problem. Instead, we've seen it as a challenge. We've tried to live in such a way that our children could see Christmas for more than the gifts. There was a time when I thought that children HAD to have piles of gifts or it "wouldn't be Christmas." I've learned better, and our children have too. Even though historically we've bought them some very nice things, gifts are never mentioned when we ask what they enjoy most about Advent. This season is so rich, and that time of gift opening (while admittedly loads of fun) isn't the point of the season. Our children won't be "deprived" this year. If nothing else, they will certainly be getting gifts from their grandparents.
I'll say it one more time, because it bears saying, and because I don't want to get a bunch of critical emails from people who missed it the first time I said it . . . this is all OK. I'm not looking for sympathy. I truly don't need it. Jeff and I really are at peace with this. I wouldn't be honest if I didn't admit to a twinge of "oooh, I wish I could by such and such for so and so," but it's really only been a twinge. Our children know they are loved by both their earthly parents and their heavenly Father, and they are right with us anticipating the blessings of Advent - blessings that don't come wrapped in shiny paper with big bows on top. They also know that in every moment of their days they are so incredibly, abundantly blessed FAR beyond so many other children in the world!!
So if I'm not looking for sympathy, or complaining about money, then why get so transparent and honest and real here? It's because I would imagine that some of you are in similar situations, and maybe you could use the encouragement of knowing you aren't alone in this. Maybe some of you aren't in this situation and are realizing that maybe you've put too much focus on the stuff, and maybe you could use the encouragement that comes from hearing another perspective on this.
I've got some practical encouragement here too. The Lord has led us to various opportunities to obtain some of their birthday gifts (for the December kids) for free or for very little money, and we KNOW that He will lead us to similar opportunities for Christmas gifts if the children are meant to have them. We've already found a number of free or almost free goodies for their stockings. One focus in being this transparent is to share how we have gotten some of these items. Listing all of my tips and tricks is really a blog post of its own, and I'll try to write it and get it up in the next day or two. There are some amazing bargains to be had if you look to the Lord and get creative!!! In the meantime, can I humbly encourage you (regardless of your financial situation) to take some time to pray about how the Lord would have you celebrate this Advent? If you have an open and obedient heart, I promise you'll be blessed!
Looks like Noah's false alarm is now a really truly official false alarm. It's Saturday night and all of the cultures are still negative. Both Dr. B. and our wonderful home health nurse have spoken to the lab supervisor and we are setting some additional safeguards in place to prevent this sort of issue again.
I'm not really angry anymore, but I am still really sad - sad AND thankful. I'm sorry if my reaction led some of you to think that I wasn't thankful for an infection-free child, and I am fully aware that there are many moms who would love to hear that their child wasn't sick after all. Believe me - there have been so many times that I would have loved to have been told that Noah was fine and I could go home. I loved the "he's not sick and you can go home" part of this deal - absolutely loved it. It just really and truly broke my heart that he had to suffer so very much because of a preventable mistake. He still has bruises and it all makes me very sad. (Oh,and yes, I do see this one as a mistake rather than an answer to prayer. To the best of my understanding, the test was done correctly and recorded correctly but the person who called Dr. B simply literally read the results wrong. When Dr. L from ID called the lab, the tech read the results correctly. I am using the word "read" in the literal sense here, not in the clinical sense of interpreting results. It is certainly an answer to prayer that Noah was not sick, but I'm not getting the sense that God reached in and changed the lab report.) Anyway, I blogged in the heat of emotion and apologize if my words were too heated or if I appeared ungrateful.
Noah's big joy right now is that he received the coveted Thomas toy that caused such a ruckus at the hospital. I had mentioned it in passing to his home nurse and she very stealthily :-) asked me for information about the DVD (which contained the ad for the toy) under the pretext of wanting a good new Thomas DVD for her adorable little boy who is a little younger than Noah. She then ran out, bought the DVD, opened it to find the ad, bought the toy and showed up at our house with it less than five minutes after we arrived home Wednesday night. This is a BIG DEAL toy with a motorized Thomas and everything, and Noah has hardly stopped playing with it. (It's called the Spin & Fix Thomas and would be a big hit if you are looking for a Christmas gift for a Thomas fan.)
God has been good and I've been able to have several VERY productive days. I got almost of my chicken and beef cooked, assembled into various recipes, and frozen. I managed to do multiple batches of meatloaf, tater tot casserole, cheesy mexican casserole, crockpot cheeseburgers, individual beef/bean/cheese burritos, white chicken enchildadas, and chicken divan. I ended up getting a few more pounds of chicken yesterday so that I can do some peanut chicken, and I have several dozen eggs that I want to use to make breakfast burritos. If I can add some baked goods (thinking of cinnamon rolls, muffins, and maybe some danishes) to the freezer next week I will feel very satisfied. It brings me such an enormous sense of relief to know that my pantry and freezer are well-stocked so that neither Jeff nor Hannah have to be burdened with food preparation when Noah is sick. We really ran down our stocks when Noah was sick so often this summer and Jeff had to cook every night when Noah was sick last month. It's not that he isn't capable of cooking (and Hannah is a truly superb cook) - it's just that somehow it makes me feel better knowing that I was able to share the comfort of a "mommy-made" meal even if I am far away in the hospital.
Of course, we are hoping and praying that Noah stays home for a LONG time and that I will get to eat every one of those meals with my family!!
Noah will be going to Hem/Onc clinic again Monday and will probably get another Venofer infusion. I'll try to update when we get back.
In a non-Noah related prayer request, (actually it's also an answer to prayer!), we are finally ready to start selling our Hands and Hearts History kits again! Many of you know that our home business was severely affected by the CPSIA and we had to discontinue our flagship products. Due to a temporary stay of enforcement of the CPSIA, we can now offer the kits at least for now. The stay of enforcement will end February 10th, 2010 and we are praying for a more permanent solution between now and then. In the meantime, we will be taking pre-orders next week and will start shipping the following week. We are offering an incredible sale during the pre-order week with tons of free gifts donated by other homeschool business friends of ours, so if you are interested in getting one of our kits, please be sure that you are subscribed to our newsletter so that you are notified when the sale starts next week. You can sign up on any page of our website ( www.handsandhearts.com). We would appreciate your prayers that this sale will go well, and would also appreciate it if any of you homeschooling moms would help us pass the word along.
We got to the hospital and got settled in, then headed off for a BUNCH of procedures in the treatment room. Noah had to get cathed instead of getting a bag urine specimen because he has had gram negative bugs grow in his urine in the past and we had to be sure we had a sterile specimin in case the gram negatives in his blood had come from a UTI. It is unbelievably hard to cath him, and he is usually sedated in the ER for this. Up on the floor they can't do sedation, but he did get some ativan to help a little.
Noah has a very tight foreskin which means that they are just working blind when trying to cath him. After almost 30 minutes of true agony the ID doctor came in and told us that she had called the lab in Greenwood to ask some more questions about his culture. Turns out that, "oh, oops" Noah is NOT growing gram negative anything. Oops. His culture is growing a gram positive bacteria that is almost always the result of a contaminated specimen - in other words, the bacteria almost certainly isn't in his blood stream at all but is due to a speck of dust.
ID said that we could go home. Like I keep saying, Noah doesn't really look bad. They stopped trying to cath him but did have to go ahead and get peripheral cultures (blood out of his arm), broviac cultures, and a bunch of other labs - but since he's looking OK we were given the go-ahead to go home and watch him with the understanding that if gets worse OR the new cultures grow something, then we come right back.
In the meantime, my baby was truly and literally tortured for 30 minutes because somebody wasn't paying attention to his or her work in a lab somewhere. Even the really seasoned and always calm nurses were traumatized by watching Noah go through this. It was horrible.
So, yeah, I'm feeling a little conflicted right now. I'm truly thrilled and stunned that we are going home, and I am heartsick and furious that Noah had to suffer like that for nothing. He was in that room in pain for just short of an hour total. He is covered in petechial hemorraging (little burst blood vessels all over from the screaming) and looks like he'll have bruises all over his thighs from being held while he fought so hard. His little boy parts are raw and hurting. Even when we were trying to do "no ouchie" procedures, he was so traumatized and terrified that he was screaming and shaking.
All because of a mistake. This would have been agony enough if we had truly needed to do this, but it is unbearable to know that he didn't need to go through this. Anybody need an object lesson for your children on why it is important to always do our best and always pay attention????
To top it all off, Noah just got a new Thomas DVD. He was holding it in the car on the way here and had a meltdown because the package contained an ad for some new Thomas that you put in a tunnel and fix or something. He decided he had to have that toy right now (sound like a three year old?). Jeff and I were trying to calm him down and making a mental note to try and find this toy for Christmas or something. Well, the Child Life worker brought that new Thomas DVD into the treatment room for Noah to watch. It had a commercial for the toy, of course. When we were done and ready to leave the room, I told Noah it was time to go to the prize box - and in the next breath said "Oh, and let's get your new Thomas too." I MEANT let's grab the new DVD so we don't forget it, but Noah thought that the new TOY was going to be in the prize box. Let's just say I am no longer a contender for the Mother of the Year award. Talk about adding insult to injury - and I was so shocked by the news of the lab error that it took me a few minutes to figure out why he was sobbing instead of picking out a prize.
Fortunately Noah is very resilient and forgiving. Child Life loaded him up with goodies which he is enjoying, and he is happy that he is going home. So am I. I just want to go home and hold him and rock him and pray that he will forget this all.
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. :-)
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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