Aug. 22, 2009 stranger than fiction
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.
Blessings,
Kate
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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.
Blessings,
Kate
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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.
Blessings,
Kate |
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Aug. 17, 2009 surgery went well
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.
Thank you for your prayers!
Blessings,
Kate |
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Aug. 16, 2009 out of options
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.
Blessings,
Kate |
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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!) |
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Aug. 14, 2009 Peace that passes understanding
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. :-) |
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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.
Kate |
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Aug. 10, 2009 A great birthday!
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!!
Off to snuggle and sleep with my BIG BOY!
Blessings,
Kate |
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Aug. 10, 2009 Happy 3rd Birthday, Noah!!!!
Today is it - Noah's big 3rd birthday. Long ago, when he was just an infant, a geneticist said that he would not expect Noah to see 3 years old if Noah did indeed have mito . . . and yet here we are. While I don't know what the future holds for our amazing boy, I do now that right now today I am blessed beyond words to be the mommy of this brave, cheerful, beautiful, funny, smart little boy.
Last night I was so overwhelmed that I had to stay awake until midnight so that I could hold my sleeping boy and watch him turn three. I could have watched him sleep all night.
He woke up giggly this morning when a doctor came in and sang Happy Birthday to him. It's so good to see him laughing. If you ask him how old he is, he says, "three sharks." I have NO idea where that is coming from, but it is very cute to hear!
Noah ended up going to the OR yesterday morning to get his broviac out. The OR was just too busy on Saturday. Everything went well. The only excitement was that the anesthesiologist had a hard time getting Noah to go under and stay under. He said that Noah is developing some resistance to anesthesia after so many surgeries and that it took a "remarkable" amount to really get him under enough. Of course once they got him down, it took him a looooong time to wake up in recovery.
While Noah already had an IV in his upper arm from the bone scan, I asked the surgical team to put in an extra, back-up IV while Noah was under. This would give us a fall back in case he lost one IV. I'm glad I insisted on this as the IV in Noah's arm went last night and had to be removed. The new IV is in his foot and he is really offended by it. He can't walk (not that he is walking much right now anyway), but we are Oh So Thankful that we had this back up and didn't have to go to the treatment room for a new IV last night.
While Noah can't get his regular TPN without a central line, he can get a sort of "TPN Light" through an IV. It has less sugar and calories, and the lipids (fat) go in at a slower rate. While it isn't enough calories for him, it is vastly preferable to just plain IV fluids. It's also somewhat hard on veins and now this one IV is our only access for his nutrition and his antibiotics. Please pray that it holds out for as long as it is needed!!
We've got all sorts of fun plans in store for Noah today and I plan to post pictures later this evening so you can all be part of his big day.
Off to enjoy my BIG BOY!
Blessings,
Kate |
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Aug. 8, 2009 broviac removal today
The bone scan has been officially read as negative, so Noah's broviac will be pulled today. It will be done in the operating room under general anesthesia. He does have a working IV right now, but since his IV's don't tend to last long, I've requested that they put a second, back-up IV in while he is under.
He will be on IV fluids and antibiotics until he has been fever-free for at least two days. At that point we will schedule the surgery for the new broviac.
Noah's hemoglobin has dropped well below his transfusion cut-off, so he will also need some blood. His doctors don't want to do it over the weekend (less staff in house) because he had that scary transfusion reaction in May. I'm not sure if they will wait until he gets his new broviac or just give the blood early next week. While he is safe, the added burden of anemia has Noah really, really tired and listless. This will probably get worse before it gets better, especially since he won't be able to get nutrition (TPN) once his broviac is out.
Jeff and the children came up for a while yesterday and we put Noah in a wagon and took him out to the beautiful Healing Garden here at the hospital. Here are some photos.
This is the whole gang. Left to right, they are Matthew (12), Sarah Elisabeth (6), Timothy (10), David (9), Hannah Grace (16) holding Mary Faith (18 months), William (14) holding Noah (3 on Monday!!)
I love this one of Hannah Grace holding Noah.
There is a big water ball fountain thingy in the garden. The next two pictures are David and Timothy with the fountain. (Can you see me in the window taking Timothy's picture?)
WHERE'S THE BABY???
THERE SHE IS!!! 
Noah spent most of our time outside just relaxing in his wagon. When decided to get up and walk around a bit, Mary Faith kept chasing him down and hugging him. He wasn't particulary thrilled LOL. She sure loves her big brother!!!
We're pretty much having a low key day today. Noah has spent most of his day resting in bed, and he is quietly playing now. I will tweet when he goes down to surgery, and tweet or update when he gets back. Please pray for a safe removal and a calm spirit for Noah!
Blessings,
Kate
P.S. We had a question about a g-tube (Mic-Key tube) for Noah. He has one - he got it back in May 2007, and he was fed that way for a while. It was his first surgery, in fact. He's had it replaced a number of times. The issue with a feeding tube is that Noah's gut doesn't work so he can't tolerate feeds through is digestive tract. When we eat, the nutrition is absorbed into our blood stream through our intestines. When Noah gets his TPN through his central line, it goes right into his blood stream directly and bypasses his digestive system altogether. We still use his g-tube for medicines that can't be given IV such as his heart medicine, oral Motrin, etc. but don't use it for feedings of any kind. It was a great suggestion - I just wish it were that easy!
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Okey dokey, here are the plans as of now. We have simply GOT to figure out and fix the source of Noah's current infection. It's really taking a toll on him and he can't keep going like this.
He'll go down for his bone scan at either 1 PM or 3 PM Eastern. I'll tweet when we go. The scan is performed using a gamma camera. It's basically the reverse of an x-ray. In x-ray imaging, the camera is the source of the radiation. In gamma camera imaging, the patient is the source of radiation. Yep, you read that right. About an hour a nurse from nuclear medicine brought in a lead canister containing a syringe of radioactive isotopes which were injected into Noah's IV. I know it's not a big deal and that this sort of thing is done all of the time, but STILL - it was a little weird all the same.
The isotopes are now traveling through Noah's blood and into his bones. The gamma camera will read the radiation and look for "cold" dark spots (indicating poor blood flow) or "hot" bright spots (indicating increased blood flow and infection). Noah will be getting high dose IV fluids to flush the isotopes through his body and out in his urine so they don't hang around long enough to poison him.
We won't have results until late today or (more likely) tomorrow sometime. IF the bone scan shows a bone infection somewhere we will treat it with IV antibiotics (long term) and possibly surgery. That is Plan One.
If the bone scan is negative, Noah's line WILL be pulled. We had discussed a PICC line (temporary central line in the arm) that we would use for TPN for a few weeks to let Noah really heal before getting a new line, but that plan has been scrapped. The long-term goal for Noah is an AV Fistula, and a PICC line could scar the vessels in his arm enough that we would lose AV Fistula access for that arm. (You can read about AV Fistulas here. They are usually done for dialysis but are starting to be used for TPN patients.)
Since a PICC line isn't an ideal option, Noah would stop TPN and just receive IV fluids and antibiotics through an IV for a few days while we watch and wait to see if Noah gets better. If Noah gets better, we can feel comfortable that the line was the source of infection. Once we're sure that he is getting better, we would place a new broviac. The surgeon himself has told me that Noah will go the OR for broviac removal under general anesthesia - no trauma and a BIG answer to prayer. That is Plan Two.
If the bone scan is negative, and we pull the line, but Noah does NOT get better, we would have to move to Plan Three. I don't know what that is. I haven't had the heart to ask.
Either way, it feels so good to have some firm plans. Ouch - I'm catching myself as I type that. The plans for Noah were firm before the foundations of the earth were laid. I'm just glad to hear that the Lord is guiding the doctors - those prayers for extreme clarity are sure being answered!!! The Lord is so good to tenderly provide me with these earthly "plans." His compassions fail not.
Of course, we now know that Noah will absolutely be in the hospital for a while longer - definitely through his birthday. Sigh. I'm not really upset about that because we were once told that he probably wouldn't live to be three years old, so I'm just incredibly thankful that he's having a birthday. Still, given the fact that this birthday is SUCH a big deal, I had hoped to celebrate it in a different fashion - maybe a trip to the zoo or something. Who knows - maybe Noah's idea of a great birthday is to spend it with his girlfriends (errr, nurses)! The hospital will provide a cake, banner, and gift. We'll also pick up a little cake from Whole Foods so our no-artificial-color children can have cake. We're hoping for a happily busy day with plenty of visitors. I sure hope he doesn't get his line out on his birthday and that he feels well enough to enjoy himself. I plan to have Jeff bring the camcorder and I'll see if we can figure out how to post some video. :-)
I need to get Hannah to put this in the sidebar, but until then I'll just repost this as requested: Noah can get mail at our business address:
Noah Estes
c/o Hands and Hearts
206 Yosemite Dr.
Greenwood SC 29649.
Folks have asked how to encourage the other children. Other than those vital prayers on their behalf, they LOVE to get mail as much as Noah does. Even a little note brings a smile. Their names once again (oldest to youngest) are Hannah, William, Matthew, TImothy, David, Sarah, Noah, and Mary Faith.
We have received several Paypal gifts and are deeply appreciative of them. They have been a tremendous blessing and we stand in awe once again at how the Lord uses His people to provide for each other.
My precious family is on their way up to see us now, so I'm going to finish this. I'll tweet updates.
Blessings,
Kate |
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Noah's feeling really clingy and pitiful, so I'll need to keep this short.
Labs have been drawn to check for reactions to Staph toxins, and Noah is having a bone scan tomorrow to see if the doctors can find any hidden pocket of infection that could be causing all of these fevers and kicking out toxins that could cause the red eyes and other symptoms. There are three main prayer issues here with this scan:
1. Pray that if there there is any hidden infection, then it will be revealed.
2. Noah will need to be sedated. There is always a higher-than-usual risk of complications when Noah is sedated.
3. The doctor will need to inject Noah with contrast which cannot go through his central line. This means he needs an IV placement. Please pray that this can be done with a minimum of pain and fear for Noah.
I will try to tweet when we go for the IV (probably tonight) and when we go for the bone scan tomorrow.
Two surgeons have been by and are trying to determine if this line needs to stay or go. Please pray for extreme clarity here. Dr. L, the Infectious Disease doctor that has been working with us this stay, is off hospital rotation now for a couple of weeks. We also love Dr. J, her replacement, but have found that "sometimes" when we switch doctors in the middle of a stay, we also end up with changes in plans/thoughts/ideas when we change doctors. because the observations/thoughts/experiences of one person will never be the same as those of another person. My great assurance is this is that I believe with all my heart in a faithful, wise, and Great Physician who is more than able to ensure the correct course.
Otherwise there is no real big news. Noah is still running fevers and feeling yucky. He is VERY irritable and testy since yesterday. He has been randomly telling me today, "I don't like treatment room. I'm scared the treatment room." He will NOT be happy to go get that IV. He's been messed with a lot this admission and has been fairly uncooperative since he's usually feverish and feeling awful when folks want to examine him. He's also been to the treatment room far more than usual this admission, so he's experiencing a good deal of anxiety.
Please pray for the family of the man who was killed on 26 yesterday. Turns out two cars were racing, one clipped the other and the clipped car hit the steel cable fence in the median then went flying and landed on the car of a grandfather who had just dropped his granddaughter off at horseback riding lessons. The fatality was the grandfather, not the one racing so foolishly. I'm sure ALL families involved need prayer as do the ones who were racing. I'm praying God will really use this in their lives in a powerful way.
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Well, we didn't end up going with Plans A, B, C, D, E, or F . . . I think maybe it was something like Plan Q! :-)
Last night I blogged that we could NOT have a leave of absence after all. The resident was working on lining up ambulance transport when she learned that Noah had received special clearance and COULD just take the leave. Great - we could just drive him ourselves - no problem.
This morning as we were getting things lined up, waiting for supplies to administer IV meds and TPN on the road, etc. we were told that Risk Management had said that no, we could NOT have the leave of absence. An ambulance transport was being located. OK - I'm flexible!!
We had to leave by 9:30 at the very latest, and as that time approached with no transport team in site, I began to grow increasingly concerned. Finally we were told that the ambulance company could not get a non-emergency ambulance here fast enough and that we just needed to get in the car and go - BUT we had to wait to be discharged officially from the hospital since we were no longer a "transport" case. I understood that this wasn't really anyone's fault but I did request that a member of the hospital staff call the doctor in Columbia to explain why we were running late. They were more than happy to do so.
It was well after 10:00 when we left, and Corey did a great job of driving safely but working hard to quickly get around slow cars and make the best possible time. We were both feeling a lot of pressure as we watched the clock and saw Noah's appointment slot growing smaller and smaller. About 45 minutes or so away from Columbia, all traffic ground to a complete stop. Every little while we were able to inch forward and kept hoping that things would clear up around the next bend or over the next little hill - but traffic stayed hopelessly jammed.
As we were spinning our wheels (or not spinning them as the case may be) it became apparent that Noah was going downhill. Despite a dose of Motrin before we left the hospital, he seemed to be developing a rising fever. His IV antibiotics had finished running but I couldn't unhook him to flush his line or hook up TPN since he was in a car seat and we were on a highway! He was hanging his head and whimpering and just looking BAD. I finally grabbed my cell phone and dialed 911.
I explained that I had a medically fragile toddler who was being taken from one hospital to another for a consultation with a specialist. I told the operator that while Noah needed medical care, we didn't really need an ambulance - I could provide the needed care if there were a way to get us out of this traffic jam and to the hospital quickly. She said there was a bad accident ahead, that almost all available resources were tied up at the scene, and that all she could do was to send us an ambulance and have the ambulance take Noah to Columbia.
We were directed to pull off the road (thank the Lord we were in the correct lane to do so) and wait for the ambulance. We found ourselves wondering HOW an ambulance could get through that solid gridlock to us. We couldn't see how cars could even move out of the way as they were at a complete stop bumper to bumper at this point. We waited 20 minutes - we were 45 minutes away, sitting at a standstill, and it was past time for us to have arrived in Columbia. I was praying when we saw a State Trooper come barreling down the side of the road going the wrong way - but going toward us!! He informed us that the road was completely impassible and that the accident included a fatality. He wanted to know if we actually needed the ambulance or if a police escort would do the trick.
We very gratefully accepted his offer of an escort. He led us down the side of the road to an exit then through all sorts of back roads until he could get us back on the highway again. He was using his lights and diverting traffic and all sorts of things to get us to Columbia as fast as possible. He led us to within 5 miles of the hospital at which point we could easily manage things ourselves.
The doctor in Columbia had been informed of the situation by our hospital here, and the receptionist called us and very sweetly informed us that they understood and would see us whenever we got there. Even though we arrived well after our appointment should have ended, everyone was very kind to us. I got Noah in, got his fluids running, found out that his temp had spiked quite high in spite of the meds, got him more meds, and just generally took care of him. (BTW - we've been asked about fever meds. Noah gets dye-free liquid Motrin alternating with with Tylenol suppositories. We never know which will work.) As I was finishing up the doctor came in and proceeded to spend AN HOUR AND A HALF with Noah!! I could not even believe it. We learned that his after-lunch appointment had cancelled, meaning he was freed up to spend extra time with us even though we were so late!
I was very impressed with this doctor and it was clear that he was seeing some patterns in the labs, hospital reports, pictures of Noah with REALLY red eyes, etc. In the end, he said that he wasn't ready to give any sort of final opinion but that he wanted to spend some more time reading and comparing some of Noah's labs and talking to Dr. L, our beloved infectious disease doctor. He did say that he suspected that these red eyes/lips were the result of a staph toxin and that he was interested in Noah having a number of studies and tests, possibly including a bone scan. If a staph toxin is at work, apparently Noah will need very long term IV antibiotics.
We have so much to be thankful for. We don't have a clear cut answer or plan at this point, but I could see the wheels spinning and I know this doctor is kicking around a number of ideas. I'm thankful that we left late - who knows where we would have been at the time of that horrible accident if we had left on time? I'm thankful for my dear friend being willing to drive me, for the State Trooper who escorted us, and for all of the staff in Columbia who treated us so kindly. I'm VERY thankful for all of the prayers going up on our behalf - it's pretty clear we needed them!
Please pray for the families of the victim(s) of this accident. Please pray for a good plan (preferably one early in the alphabet LOL) to come about as the result of this visit. Pray for Noah as he does seem to be getting sicker each day, and pray for peace for him. This was very stressful for him in so many ways, and he is absolutely shot emotionally right now. I typed most of this with one hand while holding and snuggling him.
I'm going to go ahead and post a couple of the REALLY red pictures, but I'm going to put them under my signature. They are distressing and shouldn't be viewed by children or others who may find themselves very distressed. Keep in mind these were taken a few weeks ago and, as evidenced by the photos I posted recently, Noah doesn't look like this right now. I know some of you have medical backgrounds and have been curious about just what we mean by red eyes. While his eyes/lips etc have actually looked WORSE than these pictures, they'll give you an idea of what we are dealing with.
Again, thank you all for your prayers, comments, Scriptures, poems, and more. You won't know this side of heaven how much that all means.
Blessings,
Kate
photos below the asterisks to prevent accidental viewing by children
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Aug. 4, 2009 Time for plan B - or plan C - or D???
****This is the second update for today. You can scroll down to the first post if you missed it.*****
OK, we just found out that we can NOT, in fact, do a leave of absence. There are liability issues if something happens to Noah while he is away from the hospital but under their care.
Soooo . . . he will either be discharged then readmitted tomorrow, OR he will go by ambulance. We have to leave at 9:30 AM. That's not much time to figure this all out. Can't wait to see how God is going to work this one out!!
In other trip news, our beloved ID doctor has now officially said that Noah is coming back HERE tomorrow no matter what. If he has to go to MUSC, he will go here first then be transported to MUSC. That is a gigantic relief. If we have to go, this will allow for a far more orderly transfer and better logistics.
In other Noah news, he keeps running temps today that are higher than before and are taking multiple medicine doses to drop. As of tonight, his temp is steadily climbing in spite of motrin and tylenol, so he is just going to go to a schedule of motrin, then 3 hours later tylenol, then 3 hours later motrin, etc. whether he has a fever at any given time or not.
Please pray for quick, cool thinking tomorrow with lots of wisdom and clarity so this all happens as it should - whatever that may be. If we go the discharge route, they are saying that they will let us keep our stuff here and won't assign the room to anyone else - but sometimes the best laid plans of mice and men . . . well, you know. Good thing we can trust in His plans!
Blessings,
Kate |
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OK, we are starting to get something resembling a plan for tomorrow. :-)
1. BIG praise - Noah will not be discharged. We will sign "leave of absence" papers allowing him to leave the hospital without being discharged. This means that there will be no problem getting him readmitted here, I won't lose our room (we are in one of my favorite rooms), and I won't need to empty the room and bring everything with me. I'll be packing and bringing the basics - clothes, PJ's for Noah, basic toiletries, etc. in case we do end up in MUSC, but will be able to leave a lot behind. We've had several offers of help from the Charleston area and I'm sure I'll be fine as long as I have the basics with me. One doctor today said that he feels that IF the rheumatologist wants Noah in MUSC, he would still be able to send us back here to Greenville and we could come on to MUSC in a couple of days or something. It's all so unknown right now, so packing the basics seems the most prudent course.
2. We will be going by car, not ambulance. Our home health company will be bringing me IV antibiotics, administration supplies, IV benadryl, etc. They are also bringing a one day supply of TPN in the bag that works with our pump. He'll still be running TPN between antibiotic doses and we need to be able to provide that for him. Now we can. (Thanks to those who suggested a pump rental - unfortunately the hospital pumps are the big complicated IV pumps on IV poles - nothing portable at all.) I will also have to do a dressing change at the hospital in Columbia because the doctor will need to see Noah's "spot" withought a dressing.
3. Our appointment is at noon. This means we won't battle bad traffic coming in. This doctor is actually seeing up on his lunch break!!!
4. I was able to spend a little time with Jeff and the children today. My folks watched Noah while the rest of us did Noah's birthday shopping then had lunch at a pizza buffet place. The children did really well in Toys R Us, except for Miss Mary Faith. She was blown away by all of the toys. At first she was stunned into silence, then started jabbering about and pointing at every toy that caught her eye, then . . . well, she did what overwhelmed toddlers do. She clearly couldn't understand why we wouldn't give her every toy in the store and got fairly beligerant about the entire business. It was sort of a hidden blessing because it motivated the children to shop fast and get out LOL.
5. The ID doctor came by when I was out with Jeff and the children, so I didn't actually get to speak with her. She did tell my mom that the biopsy from Noah's chest showed some cells that were possibly excema but that everyone is quite sure it isn't excema. The biopsy also indicated the possibilty of Lupus, which is an autoimmune disease. I'm hoping she comes back so I can talk to her about this.
I think that's about it in the "plan department." Noah is sicker today. His fevers are going higher and taking a long time to come down, and he obviously feels worse. I still need to find out what to do if he tanks while we are out. Jeff brought our thermometer from home so I can monitor Noah's temp on the trip if needed.
I don't know if I will have time to update again before we go. If I get any significant news tonight I'll post it, but otherwise look for an update from Jeff or Hannah tomorrow.
Once again, that appointment is at 12 noon Eastern time, and we will be on the road starting at about 9:30 AM.
Thank you so much for your prayers and comments of encouragement, and thank you for continuing to enlist others to pray for our sweet boy.
Blessings,
Kate |
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Aug. 3, 2009 exhausted and overwhelmed
We got a LOT of news today, and were also left with a LOT of new questions. I'll tell you all that I know, but please realize that I don't know as much as I would like at this point.
1. Noah is still sick. He's still spiking temps and we don't know why. He isn't laid flat non-stop and has times when he gets out of bed to sit in a chair or on the floor to play "water bucket," but he is a sick little boy.
2. His suture removal was harder and more painful than I expected. He was pretty traumatized by his time in the treatment room. It wasn't anyone's fault - it is what it is. He's terrified of having medical people mess with his broviac area, so the suture removal would have been VERY scary even if it were easy. The fact that he feels rotten doesn't help.
3. I mentioned that ID wants us to see a rheumatologist in Charleston. This doctor will actually be in Columbia (long drive, but closer than Charleston) on Wednesday - as in the day after tomorrow. Noah's team does not want him to wait. They want him to see this guy on Wednesday. This means being discharged from here and taking a sick child there. I "believe" this would entail our taking him ourselves (e.g. not an ambulance). It's an outpatient visit, not a hospital to hospital transfer, BUT the ID doctor said that the rheumatologist may well decide on Wednesday that Noah needs to go straight to MUSC (Charleston) and be admitted there. If not, we would come back to Greenville and Noah would be readmitted here. We won't know until it happens.
4. There is a growing (and apparently serious) concern in his team that Noah has some sort of autoimmune disease. The head of the pediatric team spoke with me today about the need for us all to realize that Noah may now have yet another diagnosis - one caused by the mito or not. ID spoke sort of the same way, but specifically discussed feeling that Noah may have an autoimmune disease. (Hence the rheumatologist) The fact that ID wants this done NOW in spite of many logistical hurdles and the fact that she thinks the rheumatologst may want Noah sent straight to MUSC tells me that this isn't something she is taking lightly. Honestly, it scares me a little.
5. Noah's vascular ultrasound went OK, and it revealed excellent access for a new line. That's good news whether we end up with a new line sooner or later.
6. Noah's broviac has begun to twist and kink on itself. This leads to the breakdown of the line. I don't know if this is going to be a determining factor in our line decisions or not. It is causing a lot of "line occluded" alarms at all hours of the day and night.
Ummmm . . . I think that covers the news for now. We need a LOT of prayer for the next few days. If there's ever been a time to spread the news, this would be it. Here are some specific concerns which all need to be addressed before we leave Wednesday.
--Jeff can't logically come. The children are stressed and need a parent, so he can't leave them with someone else. He can't really bring them b/c it would be a logistical nightmare if we ended up in Charleston on a spur of the moment basis as could happen. If Noah does have to go to MUSC, Jeff will try to find lodging arrangements, pack, and bring the children in a planned and orderly fashion. Doing it on Wednesday would be a LONG and HARD day for the littles especially, even if we end up coming back to Greenville. The good news there is that my dear friend Corey has offered to take me. The bad news is that of course I want and feel as if I need my husband right now. The extra good news is that God's grace will be sufficient.
--I don't know yet (although we'll formulate a plan) how to manage Noah on the road. I'll need to be administering his 2 IV antibiotics. I don't know what to do if he goes downhill or spikes a big temp. If he keeps his line tomorrow, I don't know what to do if that kinking makes the line give way and I can't adminster the antibiotics. There will be a LOT of small details that need to be worked out and I will need home health to bring a LOT of things to the hospital so I can administer all this stuff.
--I don't yet have a time for the appt. on Wednesday, but due to Noah's antibiotic schedule it is certain that Noah's TPN will be running when we leave. Unless we end up with an ambulance transport, I won't have a way to keep the TPN going. I have our pump, but it won't work with the bags or tubing from the hospital.
--The children were already extra-fragile this time around. This is a LOT more stress. They are worried. Even if we come back here Wednesday, they will A) be stressed until that decision is made and B) they are stressed by the enormity of the issues we are dealing with right now - line decisions, trying to figure out why Noah is sick right now, AND whether we are about to have an entirely new additional diagnosis added to Enigma Boy's lineup. This is also very stressful on the grandparents and Jeff and I.
--There are other smaller logistical issues, like packing up to leave then unpacking either here or at MUSC all in one day, leaving our favorite room on the 5th floor and not knowing if it will be available when (if) we come back, etc.
All you mamas with hospital experience (and many of the rest of you I'm sure) are already figuring out that this is a TON to accomplish in a very short amount of time. If Noah is going home on IV antibiotics, it's almost unheard of to get him discharged before mid-late afternoon. This is potentially a far more complicated discharge that will have to be done early in the day on Wednesday if there is any way to get to Columbia in time for any sort of appointment.
Whew. As I told a friend earlier, while I absolutely and utterly know that I will marvel at God's hand when I'm looking back from the other side of this, I sure would like to know what He is thinking right now. :-) In His timeline, the details are all worked out and there is a plan for Noah's good and God's glory. I wish my faith were such that this knowledge were truly utterly enough for me, but I have to confess to a heavy heart tonight and a sense of concern about how this will play out.
Jeff is planning on bringing up all of the children tomorrow so we can be together and so that we can slip away to shop for Noah's birthday. I want to know that this job is done, and I know the children will enjoy all doing it together. Most of them have only ever been inside Toys R Us once in their lives, so this will be a huge treat. :-)
I'll update tomorrow when we know more of a plan. I'll probably get Hannah or Jeff to send updates on Wednesday once we know where we will be going.
Thank you for your prayers.
Blessings,
Kate
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Aug. 2, 2009 thinking about some plans
Our wonderful infectious disease doctor came in to see Noah today and she shared some thoughts and ideas with me. First, she is increasingly concerned about Noah's red eyes. She thinks there may be some autoimmune issues going on and she wants him to see a pediatric rheumatologist. Unfortunately, the closest one is in Charleston. A trip like that is going to take plenty of prayer and planning!!!
She is also concerned about his line. His cultures are still negative, which is good, but the line just doesn't look great. I think the plan is to do some ultrasound studies of the blood vessels in his chest to see what kind of access he might have for a new line. If it looks like a new line is a good idea, we would pull this one, and put in a PICC line (temporary central line) for a few weeks to really let his chest heal. Then we would come back in for a new broviac. We are also looking at doing AV fistula surgery when he gets a bit bigger.
We are all concerned about his current streak of non-stop hospitalizations. Since he had received his Sub-Q Ig on Friday, the infectious disease doctor was able to check his Ig levels to get a peak number, which was good. Before he gets Sub-Q Ig on Friday, she can check for a trough level so she sees how low he gets. She is also going to call the rheumatologist tomorrow to see if he wants any labs drawn while Noah is in an active disease state.
Noah will get the sutures taken out of his chest tomorrow. Please pray that it goes well and isn't traumatic for him. We also need lots of wisdom in terms of proceeding with this line issue. Please also pray about the logistics of Noah's birthday. He'll be 3 years old on the 10th - a week from Monday! I don't know if we will be here or not, but even if we go home it will probably be very close to his birthday. I'm hoping that one day this week it will work for some friends to watch Noah so Jeff can get me and we can go birthday shopping for our little guy. God is so faithful - lots of people asked if we were having a big blood drive/birthday party for Noah again this year. We sure wanted to do so, but I just never had peace about setting it up. I've learned that if I don't have a clear green light from God, then I don't move ahead until I get one. I'm so glad I didn't start planning a huge party and a blood drive - I can't imagine the stress I would be feeling now not knowing if I would be home in time, and worrying about not being home now to get stuff done!
Here a couple of pictures of our red-eyed (and red upper lip) boy. I tried really hard to get a happy, smiley shot but he didn't have any smiles for me. While his eyes are pretty red, they are only maybe 25% of how bad they can get. I've never had the heart to post a photo of him in "full red eye mode" because it is too sad.
Oh, and Jeff called - he and our friends were able to get the big van fixed for less than 1/2 of what it would have cost to take it to the shop!!! Our two families also enjoyed a great day of fellowship. It felt odd to be talking to everyone on the phone at my house but not be there myself.
I'll update tomorrow, and I will tweet for prayer when it's time for suture removal and/or the vascular ultrasound (he hates those ultrasounds but must be still and silent).
Blessings,
Kate
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Aug. 2, 2009 Sunday morning blessings
We've got a lot for which to be thankful this morning! Noah's temp is down (at least for now) which means he's feeling well enough to play his favorite game of "water bucket." One of his primary hospital delights is to get parked on a stack of towels with a tub of water and some plastic toys. He has a great imagination and a great love for water, and will play quietly in the water for an hour or more even when nothing else can hold his attention.
We have received a triple blessing in regards to our vehicles. First, before Noah was admitted we had a sweet friend offer to trade minivans on Tuesday so we would be assured of an air-conditioned trip to Greenville for Noah's appointments. Even though we won't be taking her up on her offer now that Noah is inpatient, her kindness blessed us.
Second, we have some VERY dear friends who know "a thing or two" about car repair. The husband is like the MacGyver of cars. I'm just about convinced that he could build a car out of household items if the need arose. At any rate, his family graciously informed Jeff that they would be arriving at our home this morning to help him repair the big van, therby eliminating the labor costs and the towing costs that we were facing.
Thirdly, Jeff called me to tell me that we received via Paypal an extremely generous financial gift. It was designated to car repairs with the remainder to go toward dark chocolate! :-) This, of course, has me struggling with a profound moral dilmna . . . . . the costs of repairing the big van would have be much higher if our friends hadn't come to help. Does this mean that I owe them a dark chocolate comission of sorts?? Hmmmm . . . .
We are so excited as it is possible that the gift, along with the savings provided by our friends, will allow us to get the big van running and the air compressor on the minivan repaired. I don't know who these givers are, as Jeff just told me about it by phone, but if they are reading I want them to know how deeply touched and blessed we were, and how beautiful their timing was coming on the heels of this offer of physical help from friends - it is a powerful combination!!
While Noah is feeling better right at this moment (not better as in "all better," but better as in "willing to sit and play"), right now all labs are pointing to a bacterial infection. We don't have any cultures back yet so we don't have a firm answer, but everything is suggestive of infection. He's also got tests pending for a variety of viral illnesses including H1N1 and mono. We are deeply thankful that this doesn't appear to be one of his massively bad infections, but he is still quite a sick little guy and needs your prayers.
Practical notes - my Twitter username is ourquiverfull. I thought that would make it easy to remember since it's my blog name. If you want to follow me, you can click the link on the right hand margin under my Twitter posts. If you don't Twitter, but do want more timely updates than this blog can provide, you can always read my tweets right here on the blog. The five most recent ones are in the right hand margin of each page. There's no email notification like there is with a blog post, but if you pop over to this site you can see the tweets.
As always, thank you so much for your prayers and comments. They mean the world to us!!!!
Blessings,
Kate
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Aug. 1, 2009 Being admitted
Noah just spiked a fever of 102 and is very lethargic with lots of crying. He's being admitted to room 5514. I'll actually have MY cell (I usually have Jeff's) and can be reached at 864 992 3193. Unless you are local and calling about coming up/helping with children, etc., it would be best not to call for a few hours. We LOVE the encouraging calls, but admissions for Noah are very busy and complicated for the first couple of hours. As soon as Jeff finishes getting Noah's TPN stuff together, we'll be heading out.
I'll update when I know more. If you are a blogger or aTwitter-er, could you please spread the word to pray?? The last few admissions have been because his line looked bad on the outside. Today Noah is SICK. This is admission #6 since Easter. He's been home 10 days this time. We have some very sad children who need to experience the peace and grace of God.
Blessings,
Kate |
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