Things have been much of the same around here. Isaiah is still not himself. He is urinating better but he was cathed today and tons came out. After much calling we are finally getting in with a Urologist in the next two week. They are scheduling
Isaiah for some Urodynamic studies to test him for neurogenic bladder which seems pretty common in mito kids. He has certain points of the day that he will start retching and biting his hands even though he has urinated, so I am not sure if he is not emptying completly with could be dangerous. He also started with a congested cough again. This kid has literally been sick since the 8th of Dec. I just feel so bad for him.

I also got in touch with the TPN nurse and she has increased his TPN l earlto 18 hrs and higher calories to make up for the loss in j feeds. So hopefully he will start to gain some weight as it seems that his gut is alot worse than I thought so the timing of starting the TPN was good. It also seems like it will be a much slower process than we thought. He is also a complete wreck in terms of pain in the last afternoon until early evening. There is really nothing that touches his pain. So all this is just so exhausting and frustrating at the same time.

On the good side, Rick's basketball team is just doing amazing. They have beat every team that they have played by at least 25-30pts. I just love going to his games.

Okay folks, i have been to the ER 3x in one week with Isaiah. We finally found out the problem. He has been holding his urine which is soooo painful and this is what sent him into a long retching spell. Poor guy is sick to his stomach w/ pain from not urinating. Once he goes he is fine. So now we have to start cathing him with sucks. As if I don't have enough to do with all of Avery's issues.

It is just so heartbreaking for me to see Isaiah starting to have issues. He is my healthy one, ya know. I guess with Avery we are so used to him having so many problems and Isaiah being the stable. Now I have two kids with major issues. It is also crazy that we consider Isaiah the healthy one b/c others look at him and think he is so ill and complex. I guess it is all relative right.

So on Monday I have to try to get Isaiah into a Urologist ASAP and Avery needs the nutritionist ASAP to increase his TPN and decrease his j feeds.

But in the meantime, I am going out tonight to my hometown for a sort of High School reunion and also visiting family for the day. I thoroughly plan to have a great time before I need to be back home for 7am to get Avery off his TPN.

MERRY CHRISTMAS

Sorry I did not post yesterday but of course being Christmas Eve and all things were crazy. I was able to come home from the hospital that night with Isaiah, although the hospital would have rather admit him. We do a much better job of caring for him at home we he is comfortable. He is still pretty sick and feverish and retching. But I am very thankful to have been home for Christmas. Janessa with thrilled Santa Claus was soooo good to her. The boys could care less and both did not have a good day today. Overall it was a decent day.

Hope everyone had a good day. Praying for all the families athat are in the hospital and the troops who are away from their families.

I am so upset

I have to head back to the hospital with Isaiah. He is just to sick and something is going on with him as it has been going on for over 2 weeks now. I just don't want to spend Christmas there. Janessa will be devastated and so will I.

I am SOOO tired of sick kids

I just got back from the ER with Isaiah, yup, you heard that right. So used to going with Avery so it is weird for Isaiah to be so sick. He seemed better on Sunday as you can see by the pictures but he still had a fever before bedtime last night. This morning he woke up recthing real bad which lasted all day long despite giving his typical rescue meds. Our major concern was that he did not urinate the whole day. This is really crazy b/c Isaiah literally pees every hr. He got tons of fluids today but no pee. Also I checked his bloodsugar and it was over 200.

Off to the ER for bloodwork. He was NOT dehydrated at all. They gave him IV fluids and zofran to calm down the retching. Problem was he had sugar in his urine. I of course wanted him home as my concern was dehydration and he was fine in terms of that. But I need to follow up with my dr. in the am b/c I am high concerned about him retaining urine and his bloodsugar. The Er dr. had no answers but also thought it was concerning. OH great. As if I need more medical mysteries. We are home and Isaiah is still retching but I think he is much happier being home.

Avery is somewhat better, although he needed oxygen tonight which is something he has not needed lately.

Just hoping things settle down a bit b/c I am whooped mentally and physcially.

A few pictures

We have been housebound due to all the snow this weekend. Isaiah was back to his wild self as you can see.

A better end to a bad week

So the great news is Avery DOES NOT have a central line infection. YAY!!!!!!!!!!!!!!
His labs look great so far. They are still keeping him on the IV antibiotics as preventitive until Monday which is fine b/c he is still running fevers and not feeling well. But it is soooo much better than dealing with something as serious as a line infection. Plus I would have felt totally defeated if he got an infection just a week into his TPN. I would have felt ultimately responsible. So I am just glad the way things turned out.

On the bad side. Poor Isaiah came back with strep throat and we think he also has a sinus infection. I will tell you that this kid is such a trooper. He has been so happy despite feeling so crappy. Such an easy going boy!!!!!

To toast off a horrible week. Good friends of ours sent us or me shall I say a couple of bottles of wine. Mmmmmm. Nothing like a snow storm a wine.

I promise to have some pictures this weekend of some smiles of the kids. I feel like things have sounded so depressing and that is not me. So some smiles are ahead. Thanks all.

Okay fellow blogger readers. The sleep I was hoping to get still has not arrived. I surely am working on auto pilot. I have had a crazy work schedule this week and adding a quarterly work meeting tonight has really been too much.

Yesterday was a BAD BAD day. It started off with the normal sleep deprivation, despite giving him some new meds that the pallative dr. ordered (guess she came by the hospital room at night while we were both sleeping and she was very concerned as Avery looked VERY uncomfortable) So glad someone else was able to see this. Sometimes I feel like I am crazy.......

Avery was up in the middle of Weds. night with a fever. A fever with a central line is very alarming. The worry is that he has a line infection, so the dr. needs to be called immediately. I called in the early am, and the nurse pract. was very concerned and order a home nurse come to the house to draw labs and home IV antibiotics. This was soooo overwhelming. Meanwhile Avery was looking soooooo bad. Just really out of it and feverish.

I went to work (because I really had to but he was fine with the nurse for a few hrs). When I got home is when things got crazy. Isaiah was still not feeling well but started his antibiotics. The home nurse came and there was alot of phone calls back and forth on what to do with his TPN and antibiotics and not being able to give him his lipids (fat in the TPN) b/c it is not compatible with the antibiotics and yada yada yada. This went on for some time. Then she started the meds and the pump was not working. Great!!!!. Then our TPN pump was having issues.....

She then has to draw blood (a whole 24 cc which is HUGE for him) for which he starts to turns gray and having trouble maintaining his oxygen. Luckily he was responding to his O2 mask. Then b/c he was feverish and we were having trouble bringing it down, he was too sweaty to keep his pulse oximeter on and it would not read his sats (so we had no idea how well he was oxgenating).

So in the end the home supply company ended up delivering all the new pumps after 8pm and he finally settled down. But off course it did not last long and he was still up all night long.

Does this sound exhausting or What?????

So today I had 29 patients scheduled (although only saw 12)and a work meeting I had no idea about and did not get home until 8pm. Meanwhile Isaiah was still spiking a temp early this evening. Avery had a better day but man this boy better sleep tonight or I will surely be in the nuthouse.

Luckily tomorrow is a big storm day and we will all be housebound. Hopefully things are quiet and starting to settle down.

This has been an incredibly exhausting few days. Isaiah still does not feel well. I took him to the drs. today and his white count was up indicating some kind of infection so he was started on antibiotics which is for the best. I am worried Avery my catch it and not fair as well as Isaiah did.

So a rundown of my day today.................................

Up literally every hr. with Avery with no nursing. So I wake up sooo crabby. Avery is up and get meds and vomits them up. Ugh. I now have to take Isaiah to the drs. b/c it is day 8 and he is still not better. Go in at 10am to the drs. with is a complete fiasco. Isaiah is SUCH a crazy boy. He has some uncontrolled movements and some quite controlled ones. He kicked the dr. in the face (that being uncontrolled), kicked the lab guy in the cahoonas (quite controlled). Then the chest x-ray seemed like something out of the three stooges. So crazy. I was just cracking up. The kid does not stay still at all and it took three people to get chest x-rays in his stroller. We finally got them but I really wish I had a camera, too funny.

Anyway, but the end of the drs. visit I was exhausted. Drop Isaiah back home and off to work in Boston. Call supply company, nurses and drs on the way into to work which is very typical and why my cellphone bill is unbelievable. See 12 patients at work and am TOTALLY wiped by this point. Then heading home I hit the typical traffic for which I am never in b/c I am usually home well before rush hr. So I am VERY frustrated sitting in traffic for over 1.5 hrs. Get home and Avery had a miserable day b/c of his feeds but is in bed by the time I get home.

Luckily for my glass of wine I tell ya. Oh yeah, Janessa was asking for her friends in the neighborhood to sleepover tonight. ARE YA KIDDING ME!!!!!!!

So my wish for tonight is that AVERY SLEEPS.........Please pray for some sleepy vibes. I feel like I am going to lose it if I don't get some sleep. Especially b/c I have a killer work schedule for tomorrow. I just don't know how long I can keep all this up for. I am surely NOT superwoman.

Hey All

We are home and oh so grateful to have lights and heat. We are one of the very few neighborhoods around to have power. Thursday evening there was a pretty bad ice storm and damage to many homes. We were sooo lucky to have snuck under the radar. Otherwise Avery and I would still be in the hospital. I have no idea what we would have done with Isaiah and Janessa. I am praying for all the families that are without power.

Poor Isaiah has been pretty sick all week. He has a pretty bad cold and I am worried it will turn into a pneumonia. I have never seen him sick like this, it makes me nervous but he is such a trooper. I will be bringing him to the drs. in the morning. I am a bit paranoid about Avery catching it as well.

Okay this whole TPN stuff is soooo overwhelming. Mainly because he has c-diff again and c-diff and a port accessed (meaning the IV to his heart is exposed) is a VERY bad mix. He usually wakes up in the morning covered in poop, so this is VERY nervewrecking. I am so scared that he will get a line infection b/c of the poop. Also I am overwhelmed by all the calories we need to get into him. It is not realistic at all and he just will not tolerate all this feed. I just cannot believe that such a little guy requires THAT much food.

I swear I didn't sign on for all this. I just feel like I am drowning this week. I am sure things will stabilize but for right now, they are overwhelming. Also I am stressed b/c I missed a week of work and have so much catching up to do.

The goal is to get Mr. Avery tolerating his tube feeds so we can get him off the TPN b/c the risk of infection is too high for my liking. Hope everyone is well and thanks for reading.

Oh I will have to post pictures tomorrow of the tree Janessa picked out. Let's just say it is just as big as I am and we all know he big I am not!!!!!

update by Sis Sherri,
Hello all, spoke with Nikki and it has been a very uneventful week for once, They checked in on Monday and had a room within a Half hour ( this has never happened before) They were welcomed by the staff at the hospital as they all know Avery so well. Nikki questioned whether to do the TPN or not however Avery had lost almost 3 pounds in a few week time span, So this was pretty concerning for the Doctors. He started his TPN on Tuesday. The problem is since he has a metabolic disorder, he needs a very high fat concentration of TPN in order to get the caloris he needs. This means that he will have to be on TPN for 20 hours instead of the 12 hours that Nikki was hoping for. But the Doctors gave them the option of going 16 hours on TPN, but that would mean that he would need to be on 12 hours of his feeding tube in addition to the 16 hours of TPN. Yes this is very confusing as I am very confused writing this. WHat this boils down to is that Avery needs a whole lot of food to gain any weight. If all goes well they will be home on friday with a bunch of new equipment to add to the collection. On a funny note, they now have to figure out how to stop Isaiah from eating Avery's new longer cord LOL

Crazy me took Janessa to the American Girl store which was something else. The mall was mobbed but luckily you just had to go through one store and outside to get to it. This store is two floors of dolls stuff, including a hair salon and a bistro. Unbelieveable. So much for the economy not doing well. Of course Miss Janessa made out like flynn. Must be the guilt of me going to the hospital this week. Happens all the time.

Went out with the girls last night and had a bawl. So glad I have you ladies to keep me laughing and keeping things real.

Just as I was thinking Avery was doing really well over the last couple of days and almost second guessing the TPN, Yup. You know the other shoe dropped. He woke up this morning vomitting unbelieveably and aspirated. This I am thinking is that since he was doing well the last couple of days we bumped him back to full feeds. So once he got his meds this morning it set his gut over the edge. He had a low grade fever tonight but was in a good mood cooing all day. So it is best we are going in tomorrow. Sounds like he will need a chest x-ray and bloodwork. Also sounds like a break from his feeds is a good idea.

Will keep you all posted as how the week is going. Thanks for reading

Change in plans

Avery is actually going to be admitted on Monday instead. I am bummed b/c I would have been home by tues. and would only have missed 2 days of work but no I will just about miss the full week. Oh well, what can you do. Plus drs. don't like to work the weekend. So I will take this weekend and hang out with Janessa and Isaiah.

Janessa and I are going to the new American Girl store. She is pretty excited. Not sure I am too excited about the crowds at the mall but am interested in what this store is all about.

Will keep you all posted this week. Thanks for thinking of us.

18 yrs ago today

I stole Rick from his high school girlfriend. I know I am a bad girl, what can I say. We were just meant to be from the begining. Although Rick did have a crush on me first and told one of his best friends he would marry me someday,that was before I stole him from his girlfriend.....

I can't believe I have been with him longer than I was at home with my mom. Time just flies by. We have basically grown up together. Learned so much over the years. Through it all, our relationship has matured to the point that we are still happily married and raising three kids. All the trials and tribulations we have been through were just all a lesson for both of us. I am so proud at the couple we have become. Just wanted to say how much I love you babe. Even though you kinda forgot today. I forgive you. Crazy thing is I am the one who usually forgets.

How do you like the picture of us??? Hehehehe. Rick with hair and what is up with my hair and the lovely outfit. LOL!!!!!!

Avery will be admitted on Sat.

The GI dr. thinks I am a lune I am sure as I have been calling his secretary bugging her about when they plan to get this ball rolling. We had the team meeting over 2 weeks ago and Avery's feeds have been cut to provide comfort for him. We all know how fast he goes downhill. So needless to say, it makes me nervous to wait another week. He sounded a bit put off b/c I wanted in this week and he is going out of town. Personally, he doesn't have a clue on what to do with Avery and who he is so I really could care less if he is there for the admission.

For me, I just want to get Avery to the point that he has at least 4 good days a week instead of 1-2. This is big for us. SO if the TPN can do this for him then sign us up. It will be a 3 day stay b/c they have to regulate his blood sugars and such. Hopefully there are no complications. I am not nervous about the admission just eager.

Will keep you all posted!!!!

We had a very nice and quiet Thanksgiving. boys did really well, they even tried some food (they were not overly thrilled though). I got up a 4am for Black Friday and finished the majority of my shopping, wooohooo.

Avery has been struggling with his feeds a bit. On thanksgiving, we forgot to turn on his night feeds and he went over 10 hrs without feeds and had a great Friday. So this is leading me to believe that he is up and uncomfortable alot because of his feeds. I have been shutting him off for longer periods but that is not good b/c he dehydrates so quickly. It is a very fine line and he needs so many calories. So I really thing moving forward with the TPN is a great idea at this point. He will still get some food through his j tube but the rest will be through the IV/port his has. He is so very uncomfortable at night so I am really going to push the drs. for getting things started this week. It is just not fair for him to keep being so uncomfortable. Just really hoping this gives him the break he needs. The best case scenario would be he only needs this for a month or two and he can go back to his full feeds.

With mito kids, it is always worrisome that they gut is shutting down. It just makes me very nervous if I am nearing this point. Although I don't think we are there yet. Because there are so many muscles in the gi system, it can be the most suseptible with mito kids due to the muscle weakness. One step at a time is all I can do right now.

10 Things to Be Thankful For

1. The first is very obvious, my beautiful family.

2. Rick and I have stable jobs that we enjoy especially in this economy.

3. That I can find the ability to laugh alot amidst all the craziness and keep a postive attitude.

4. We have such supportive family and friends and I have to add my many online moms that have helped me through so much.

5. That I am not in the hospital much these days as there are many families in the hospital especially during the holidays.

6. That we have a great team caring for our boys. They are all so caring and extend that extra hand. DOn't know what I would do without them.

7. That Rick and I still manage to get out together often and be husband and wife and not just mommy and daddy.

8. That we have such a great and realistic outlook when it comes to all the tough medical decisions we need to make with the boys. As you know many marriages do not survive having one special needs child let alone two.

9. That we were able to move last year as it has literally save our life.

10. That I was able to visit my sister, aunt and neices and nephew this weekend even though it seemed as I would not make it there.

Wishing everyone a safe, happy and healthy THANKSGIVING!!!!!!!!!!!!!!!!!!!!!!!!

Things have been pretty much unchanged in terms of Avery's reflux issues. Although he has slept pretty decent the last 2 nights, I should whisper that though. Some days he spends being super fussy and others he is okay but has a major problem with getting his meds (which is an issue). Whenever he gets his meds which is at least
4x a day, he turns pale white and starts retching and vomitting and then gets junky.

At this point, SOMETHING needs to be done. I have thought about things alot and discussed with the experts (other moms) as well as pallative care. For Avery, the decisions we are going to have to make are just going to get tougher and nothing is going to be a fix, just more of a bandaid. It is so depressing when you really think about it. I think the least invasive thing to do is to put him on TPN (IV nutrition) at night. He really needs some gut rest and this will do it for him. Hopefully just giving it at night will give him the break his gut needs. My worry is needing it fulltime which can damage the liver overtime. We are just going to start there and see how he does. It will be good b/c we can convert some of his meds to IV form which may be more effective.

I also sat down with the pallative home nurse and we are going to make a home protocol plan as well as an ER one. This will hopefully help us avoid a hospital stay and possibly the ER. The more he is home the better as far as I am concerned. They are very impressed with how well our family does given the circumstances which was nice to hear.

We should be going inpatient to start the TPN and get the ph probe (tests the reflux). We all will need alot of training.

Rick and Janessa are serving at the homeless which is really nice.

My Family

Everyone is HOME

Janessa and I ended up having a very good weekend despite our crazy start. It was so nice to see my family and get some baby holding time in. Short and sweet trip.

I am so proud of Rick. He did a wonderful job holding down the fort while I was gone. He handled the crisis very well. Although there were some things he left out that I would have freaked over but it was fine. They ran all the proper labs and did all the normal interventions which seemed to work well. Avery went from severe metabolic crisis to his normal self within a day. He is such a crazy boy. When I came home and saw him today, you would have never known what he went through this weekend.

No ruling on the fever, dehydration and crazy labs. This is not the first time he has presented like this so we know how to handle him when he gets like this but things just go downhill within a matter of minutes so it is extremely scarey. My nurse handled things great. So it made being away much more comforting for me.

It can be so hard when you have to make tough decisions and I felt like Avery was in good hands and I didn't want to disappoint Janessa. She would have been devastated. Things all worked out for the better. I now know I can leave Avery for a bit and he will be okay without me. But he better not do that again.

Thanks for all the prayers.

So I am posting early so that is NOT a good sign

Avery was up at 4am vomitting which was not atypical of him and he had a fever 101. I was a bit concerned but figured it was just a virus and things could be handled by the crew.

SO I was wrong. While I am boarding the plane to Georgia, my nurse called said he did not look good, his heartrate was over 180 and his respirations were over 75. Called Rick to send him to the ER w/ Avery. By the time he got there he his heartrate was over 200 and he had a 103 fever and just not doing well at all. The ambulance was called and they were having difficulty getting his line accessed to get fluids in him quick. They finally got a his line accessed and labs drawn. His white count was 34. WHeeew, that is high and indicative of an infection, possibly bacterial. He was transferred to CHildrens and will be in the ICP which is the stepdown ICU unit.

Meanwhile I was on the airplane and could not get info. for 3 hrs. I was dying. We landed and I finally got info. I am in Georgia and will be for the weekend. Rick will be with Avery. I feel better knowing that the drs. on the unit know him well. I actually spoke to the attending and he just took care of Avery last week in the ER so it makes me feel better.

So so a prayer that he recovers quickly from this and I don't go crazy being so far away.

Never a dull moment.

Last night was really rough. Mr. Avery was up every hr after midnight. I suspect it was reflux related pain. Even giving him an extra dose of his pain meds really made no difference. So as you can see, things are getting worse in terms of his reflux and some definite decisions will need to be made soon.

Luckily, I get to go away for the weekend. Sleeeepppp all night, hopefully. Although my sister does have a newborn. Hehehe, hopefully I will still get some sleep. But it will also give me some time to think about how to move forward with Avery's care. Also able to visit w/ family. And spend some time with Ness. Rick is all set with nursing. Lucky guy.

Hopefully all is quiet at home while I am gone. Although the boys usually know when to get sick (just when I am getting off the plane).

I will be back to posting either Sunday or Monday. Expect many pictures of course. You have not seen my new neice here yet so it is coming soon.

The Meeting

WARNING VERY TECHNICAL INFO AHEAD

So my day did not start well b/c I was stuck in traffic for over 2 hrs which made me late for the meeting. If you know me, I HATE HATE being late. Then to top it off the only drs. that showed was GI, neuro and pallative care dr. The Pulmonlogist apparently NEVER attends these type of meeting. Gotta love how committed a dr. she is huh. Kinda of one of the important drs. considering his primary problems now are respiratory and GI issues.

Anyway. The GI dr. was not surprised with his reflux issues said that alot of kids w/ mito max out there meds overtime despite any changes you make. Oh great!!! He also felt that he has much more underlying motility issues (moving food through his system) and that doing a fundo would not help those issues. It would only help the reflux from coming up further and then aspirating. He said that I would more than likely have another Isaiah on my hands in terms of the cyclic vomitting. Just as I thought. Although the neuro did not agree with any of this and thought it was perfectly fine to do a fundo on him as she didn't think Isaiah's issues were a result of the fundo. That I thought was total BS.

He is definetly ordering a ph probe and endscopy to determine how bad he reflux actually is which I am in agreement w/. He also wants manometry testing done which is pretty intensive but it will give us alot of answers of what is going on with Avery. Problem is it can take a long time to schedule and get the results. The one dr. that does it is in Boston but one of the very few in this country. Luckily there is a new dr. on board recently that can also do it and this is who we are going with.

In the meantime, he wanted to start Avery on TPN (IV nutrition) at night to give his gut a rest and hopefully minimize his reflux during the night. THis is the BIG, I am not sure about and not quite understanding. This can bring many risks.

1. His port (central line) would be now accessed daily which bring huge infection risks.
2.Increased risks of blood clots which he has already had a major issue with.
3. Lots more work for us (as if we need any more)

I certainly have to get more info about this before I agree to it, however I would much rather do this than get a fundo. The plus is that we could probably convert alot of his meds to IV form which would also be better for him. He is vomitting and retching tons just with meds which is at least 3-4x a day.

Also the neuro. increased his neurotin at night which hopefully helps him to sleep more at night. We are taking away his clonodine and possibly klonopin (you have no idea of many meds this poor kid has). We will eventually at another med. But all of this will be done VERY slowly and one-by-by.

Now it would be great if all the med. changes would solve our issues but somehow I doubt it. So some hospitalizations will be planned soon and lots of decisions to make based on the results of all the testing.

IF you got this far, congrats and thanks for reading, If you got this far and still have no idea what I am talking about. Don't worry b/c I hardly have an idea what I am saying either. LOL.

I am so excited!!!!!!!!!!!

Janessa and I are going to visit my sister this weekend. It was a last minute idea. I found a flight cheaper this week than in Dec. or Jan so we jumped on it. Janessa has not seen my neice or nephew since last yr. We have not met my new neice yet. It should be fun girl time. Of course I am always nervous about leaving the boys. Actually more anxious about it. I told Rick I thought I was becoming agorophobic, LOL. Naw, it is just nervewrecking leaving Avery especially the way he changes on a dime. But I will think positive because I have a great crew of nurses and know he is in good hands.

Avery is done with his antibiotic and is struggling w/ mucous plugs which also makes me nervous so we are going to start him on the prednisone before I leave. Hopefully this will clear him up totally. We have also switched his reflux med and he seems a bit happier although is still vomitting. I am going to wait a week and see how things go. We are still meeting with the team and will come up with a plan in case the new med. doesn't work.

Isaiah was not feeling well since last night, he was sluggish today. Hopefully he is back to his normal self by the am. I just hate to see him not feeling well.

More tough decisions

It is so hard being a parent and having to make really hard decisions that cn affect your child's quality of life in a major way. This is where we are at again with Avery. There is no easy answer and it is a decision that only Rick and I can make for him. Uggh, I hate this.

Avery has been suffering terribly during the day with his reflux. His methadone and ativan does not even calm his down. It is pretty hard to watch. I just don't understand how it suddenly came about.

Problem is that we if changing his meds does not work then our only option is to do a fundo. But even doing the fundo surgery is certainly no guarantee that things will improve significantly. They may be better in terms of the reflux burning his throat but he could end up retching like Isaiah does which cannot be undone. So it is more of which is the better (chronic burning reflux which can cause worse damage or possibly constant retching) or we could do the fundo and get really good results from it. OR the sugery could just be too much on his body. So you see our dilemna!!!

I really hope the drs. have this new solutions that does not require surgery and is a perfect solution. Somehow I highly doubt it. And it is not that I am being a pessamist but just have done alot of research and know how things are.

Onto a different subject that is more postive:

We went to Janessa's teacher conference and was so thrilled with how good of a student she is. She is strong in all subject and is the first one to raise her hand w/ answers. She is the "go to kid" in the class for other students. I am so relieved b/c it is one less thing that we have to worry about. Also makes us proud that we have done well in raising her. But doesn't mean she is not a pest at home. LOL.

Okay so Avery only got up 8x instead of 10 last night which was an improvement. Rick actually did get up last night and he didn't even read the blog beforehand. LOL....

Avery was up screaming most of the night and just wanted someone to lay in the bed with him. Rick was finally able to get him to sleep.

Today he had a very miserable day with refluxing. He sure was trying to be happy (smiling at the tv every once in awhile) then he would remember how much pain he was in. He has been doing well in terms of the pneumonia by coughing up alot of the junk. Although he is requiring O2 at night which is to be expected. But I can see w/ of this refluxing that it is going to be hard to keep the pneumonia's at bay.

We have a team meeting next Wed. so we will see if we can find any resolutions. Although I am sure they are going to push me about doing the fundo which is totally not up for discussion in my book.


Isaiah has been doing great. This is his longest stretch of going to school daily. His therapists and sped. teacher are excited with how much progress he has made and his upper body is getting really strong. His head control has also gotten so much better. It is so nice to see one of my mito kids making such progress.

Introducing Steve Irkel's Girlfriend!!!!!

She is so silly. Janessa loves to do impressions and does them well. This is one of many. She just kills me!!!!

Okay so I spoke too soon

I mean sure he looks good, buuuuttt..... He sure had my heart pounding tonight. I could not keep his O2 sats above 88 on 3.5 liters of O2 which is NOT good. Remember he should be above 95%, especially on O2. Mind you he was sleeping. No temp and he didn't sound that bad, until I gave him a nebulizer. This is when all the junk comes up and he really desats. I suctioned him and tons of thick stuff comes up. Poor kid. Tonight is going to be one of those night where I pop out of bed at least 10 times b/c the alarm is going off. All the while Rick is sound asleep snoring. I am swearing like crazy b/c I haven't gotten any sleep and I have to work in the morning. Then wake up to getting 3 kids ready in the am and Janessa jumping in our bed during the night. Just a typical night in the Nault household.


I forgot to mention that my MIL got us these awesome microfleece sheets that feel like feety pj that you just don't want to get out of. I hate to get out of my bed 10x a night, buuuuuttttt.......


What r ya gonna do!!!!!!!!! Just a day in the life

Does this look like a boy with Pneumonia????

This kid is just something else. He is so happy and yet he has pneumonia. I am so happy to have been home w/ him and not in the germ infested hospital. How can he not bring a smile to your face.

Back home again

I just love these quick in and out. Avery looked great all day. He does in fact have pneumonia in the left lobe and his white count was elevated consistent an infection. The x-rays were also consistent (which are so brutal, I can see how he broke his arms last yr). The ER dr. knew us from being frequent flyers and was really good and thorough. He contacted all our drs who apparently were not surprised we were in there. They agreed to send him home with oral antibiotics and if they don't work then start the steriods. They have scheduled a team meeting for next week to help come to some resolution or help w/ all of these pneumonia's. So I feel very blessed to be home and get some sleep as I have nursing tonight.


Please pray hard for Landon, his site is below under my sites/blogs. Thanks for reading.

We are Heading in

Avery had a very rough night w/ high fevers and just not feeling well. Although this morning he is smiley. I am almost certain he has a pneumonia b/c of the fevers. Kinda called it during the weekend. He needs a chest x-ray and labs. Not sure if we will be admitted but if we are, please pray for some solutions to these pneonomias.

Lots to Ponder Over

Over the weekend Avery continued to be gaggy so the dr. suggested Zofran which is an antinausea med. Well that worked really well but it can dry you up which the our "wonder drug sudafed" also does so we held the sudafed. Well big mistake b/c he returned to his junky self and desatted ALL night even on O2.

Then I found out his tube change was for today instead of tomorrow. Dingy me, it's a holiday tomorrow. Now we were hoping the tube was displaced causing his increased reflux. Well of course that was not the case. It was in fine and they did not even see any reflux. He continued to be totally junky throughout the day even though we gave him sudafed.

We ran into the Pallative dr. and discussed his symptoms which she took to be more respiratory related but that was not our issue until today. She wanted a team meeting with all his drs (neuro, gi, pulm, and ccs) so she emailed them all. Apparently the email said we were concerned about a pneumonia for respiratory wise and not GI issues. So the email was deferred to the pulm. of course.

Her nurse called a bit ago and said they wanted him on a steroid prelone which was brutal the last time and did not seem to help. I told her it was more GI stuff (although while saying that he was desatting left and right) and that the sudafed was our wonder drug. Well she told me we should NOT be using it daily and it is only is meant to be used about every other day. WHAT.... and who told us to use it daily. So I say, Um your nurse practioner. She wanted him on the prelone for 5 days and NO sudafed. UGh...

Also he is so very junky and not looking very good. So don't be surprised if we end up in the hospital. His heartrate is really up and so are his respirations.

What a mess!!!!!!!!!

Avery is such a mystery. I sure wish he could tell us what is bothering him. It's a constant guessing game. Yesterday morning he had a low grade fever so I immediately assumed he had an aspiration pneumonia. I called the pallative team and they were going to deliver an antibiotic (isn't that wonderful). Great thing about having them on board (we can avoid the germ infested ER). Anyway, no fever the rest of the day but tons of gagging throughout the day. So we did not start the abx b/c I sure don't want the c-diff to return as this is the longest in over a yr we have gone without it.

On Friday, i convinced the GI dr. to up his reflux meds but it actually seems to be having the opposite affect which is increased gagging, nausea and upset stomach. Ugh, we can't win. Poor kid is hiccupping, pale and vomits at times.

I will be going in on Tues to have his j tube changed which we are hoping this will solve alot of issues but I highly doubt it b/c I know it is not displaced. We are also meeting with the pallative team to come up with a plan for Avery. As me not doing a fundo is off the table, we are left with very few options. We have to maximize his meds so we are not constantly running into aspiration pneum. which are so dangerous for him. I am also questioning on whether we should do a ph probe and endoscopy b/c I am concerned he could have a ulcer which the symptoms are pretty similar.

Isaiah's motility issues have seemed to get alot better b/c of slowing his feeds. Yay. So one big problem fixed without surgery.

Janessa has been out and about all weekend catching up with friends where we used to live. One of our friends we have not sen in awhile. The girls are only 3 weeks apart and my friend and I have been friends since the first day of college so it is nice to see the girls whispering to each other like we used to so many yrs ago. They are little us and so grown.


So other than that things are going well. Please pray that we get some things figured out with Avery and make him more comfortable.

Do you like the new background?

Here we are at the Celtics

While Rick and I were having a great night the boys were not. But hey we still were able to get out and it was nice.

Getting concerned about Avery's reflux

It seems as if it came out of nowhere. He has been on reflux meds since he was an infant and I don't ever remember any major signs of his reflux. Until recently. I honestly think it was from all the suctioning that made his gag reflex really sensitive which if you remember was a big concern of mine. Well seems as if reared it's ugly head. He has not been suctioned in about 2 weeks but it seems to have causes him to reflux high and today he aspirated on it, vomitted and turned blue. This is the big danger.

Problem is, there are no other meds that are effective at this point for him. The only solutions would be a fundiplication which I am admanently against. Isaiah had this done and now suffers from his Cyclic Vomitting as a result. So no way no how. Many drs. ask about this for Avery and I won't do it. What it is a surgery in which the stretch the stomach and wrap it around the bottom half of the esophagus to prevent the reflux from coming up by the lungs and causing an aspiration. But what can happen is many kids that are neurologically impaired, which is Avery without a doubt, can suffer nerve damage. Which is what I believe Isaiah has.

Plus that is way too invasive and Isaiah had great difficulty recovering so I cannot even imagine what Avery would be like.

So you see my dilemna......I am really at a loss. This aspiration is a scary thing for him. I came home after shopping with Rick and Janessa and I find her by the suction machine with Avery looking a bit stressed. She is a very calm nurse and she said he was blue after vomitting and just did not look well. So BIG PROBLEM.

Question is, what to do?

Here is Isaiah literally Steam rolling Avery

I am still beaming from last night's election. It was just something else. I cannot get enough of all the media coverage. Did you know that I often call into radio shows about politics. Now I am no expert but this election has gotten me so excited. And as a black women and an American, I am just in awe of this country. So proud to be an American. The people spoke last night for sure. I could not get over how many first time voters, young and old. Just monumental. To be able to tell my daughter that she can be whatever she wants to be is unbelievable. Not to mention, she knows just as much about this election as I do. LOL. That is what last night was all about. Congratulations Barack Obama.

On the home front, I was going to blog about how great things are going..... Until I got home of course today. Avery is doing great in terms of his respiratory status which is a complete godsend. But his spascity and pain is completely out of control. I think alot of it is related to reflux pain which really sucks. He has maxed out all of his reflux meds and cannot get anything else. He has been very gaggy and started vomitting lately. Can't imagine how bad it burns him. The insurance company stopped paying for prevacid and switched both boys to prilosec which is obviously not doing the trick. He is also on zantac 2x a day and is allergic to a couple of other reflux meds, so we are screwed. We are going to try to appeal the prevacid. He literally spent the whole day today with his arms and legs straight out and mouth cocked to the side with constant moaning. No nap today. So I am sure his night will not be to great.

This kid just cannot catch a break. Every time we fix one problem, another one appears. He may only have about 1-2 days that he is pain-free or manageable. Again, all of this is manageable at home but it is sure heartbreaking.

The pallative drs. just increased his neurotin to help with the spasms. Hopefully this works. Most of all I just want him to be comfortable, that is all that I can ask for but it seems to be pretty hard to get these days.

Rick and I are going to the Celtics on Friday. We have never done that together. Can you believe it, my husband being the basketball freak and all. Should be fun, pending things are quiet at home.

We had a quiet weekend which is always wonderful, except keeping up with Mr. wildman himself, Isaiah. I have to post some pictures. The boy literally rolls over Avery, kicks him in the face and pulls at his tube. You cannot leave him for one minute. Kid surely needs some Ritalin, LOL. He is either retching and laying there like a bump on a log or into everything. But I love it b/c he has such a personality, just like any other kid.

Avery has not rolled again but I am sure will be doing it consistently soon. He had a great weekend but both him and Isaiah are having issues with their bellies. Avery is refluxing tons and gets really gaggy. New thing for him. Isaiah retched on Friday and was good all weekend, then started up again tonight.

But with all of this craziness, I am sooooo happy that we can handle it all at HOME. I know alot of kids that have been in the hospital suffering with many issues and it just saddens me for the families. I know what it is like and surely don't want to be there again. We are so blessed for the time that we get to be home. I feel in my heart that Avery has made a turn around toward stability. At least that is what I would live to believe. At this point we do such a good job keeping him home and I really hope it continues. I mean I don't mind being in the hospital for a short 2 day stay but that is about it.

I just feel that Avery is at home where he needs to be.

So please say a prayer for all the families that are in the hospital with there little ones b/c there are so many of them. Especially for my friend Debbie, she needs lots of hugs and prayers.

www.caringbridge.org/visit/jaidenandmarlowhite

GREAT NEWS!!!!!!

Mr. Avery rolled over today. He has been really trying to move his arms and legs over the past couple of days. He had a great nap today so lots of energy and so active. He rolled from his back to his belly. Avery has not done this in more than a year. Such a blessing. And so proud of himself of course. What a great ending to a crazy start of our week. He has been sounding really clear and has not needed
O2 since earlier in the week. The more active his gets the better it is for his respiratory system too. So lots of good news for him. There is going to be some crazy rolling boys around here. LOL.

Isaiah started retching today which always stinks. Not sure if it is a cycle or not. His leaking around his tube site has slowed down considerably b/c we have started to lengthen his feeds to while he is sleeping and giving him smaller amounts at a time. This is b/c his motility is slower so there is less food to move. Hopefully this is the key and we are able to avoid any invasive procedures.

Hope everyone had a great Halloween.

So earlier this week we had a "MAJOR INCIDENT" which almost killed Avery, literally. He was actually coding and by the Grace of God was able to come out of it. We are truely blessed to have God working in our lives. Also Mr. Avery is one amazing little boy who shows us time and time again that he wants to be here. I have said it before that he is here for a distinct purpose and it is not even near done. I sure don't ever want it to be but I do know that it will eventually. I am still reeling from this and so is Rick. To think that after all he has been through and all the strides he has made that we could have lost him this week b/c of carelessness just kills me.

But things turned out okay and am so grateful for that and will continue to cherish my little miracle. Sure don't know how many lives he has but I hope its many more.

Avery has been doing really well respiratory wise lately. He has gone about 1.5 weeks without o2 at night unless he is on bipap which is a Miracle. This sudafed has really done wonders for him in that respect. However, his spasicity has been really bad lately. He is up alot more at night screaming in pain and very stiff and uncomfortable in his own skin during the day. The Pallative nurse is coming tomorrow with flush his port and will work with us to adjust his meds. Hopefully this will work. We are so close to getting him to the point of feeling good most of the day. I am so eager to do this for him so he can regain some sort of life. As you can see by the last pictures what he can do if he feels good. You surely don't want to see pictures of what he looks like when he is not feeling well.

Isaiah is still having tons of leaking which I do believe is a motility issues which is not good. So I know I will not put another hole in him at this point. I am going to see if we can try some other meds and get more testing in for him. But again it is all the process of this terrible disease. He is doing great otherwise and really learning so much at school.

Things othewise are pretty quiet around here.

Happy Halloween!!!!!

Look at ME!!!!!!

This is really hardwork for Avery but he is feeling good these days and was able to hold up his head for 2 mins. HUGE milestone. Doesn't he look like a big boy now. Sad.

My poor little man. It is true that he is much clearer than before with the sudafed on board. But..... he still has mucous plugs and secretions for which he tries to hide b/c he is so afraid of being suctioned. He will quietly work on the secretions on his own until he can no longer take it then he turns to a total spaz b/c he knows what the outcome will be. Isn't that so heartbreaking.

This morning he was up bright and early at 4:30 (no nurse) and had alot of secretions. Honestly, I was too exhausted to do much of anything and over time he worked it out on his own and coughed. Who would know my little guy would be an emotional wreck but he truely is. He spent the majority of his day in spasm mode today with some secretions and had to be suctioned but then vomitted which is not what we want. He seems so be vomitting when things get near his mouth. I was worried about this happening. When you are suctioned alot then there is a risk of making the gag reflex overactive or nonexistent which would screw us either way. Just hope it is a fluke thing.

It is taking him hrs to go to sleep at night and lots of meds to do so. My kid just REALLY needs a break. I just would like for him to have one full week of peace. I just think that he has been through so much and is does not trust people and what they will do to him, except his momma of course. I wish I could stay home for a week straight just to reassure him to see if this is his issue and to fix it. But that is not reality, unfortunately.

Things have been reasonably quiet around here. The sudafed really seems to be helping Avery in terms of him being able to manage his own secretions more by coughing. But it sure does not come without it's issues. Sleep for one. He went from being drowsy with it to not wanting to go to sleep at night. Last night he cried for 3 hrs. which of course resulted in him being suctioned and needing o2. He has actually gone the last few nights without needing oxygen which is such a huge improvement for us. I swear it is like we were given a longer life span. It' not that I feel that it has solved our problems but it surely helps and we are so grateful for it. He is actually starting to be much happy now that he knows he is not getting all kinds of interventions. It's like he is just starting to trust us again. Although he was a wreck today in terms of his spasicity. This is where the Pallative nurse will come in handy though. I just pray that we can continue on this path with him b/c he so deserves it. BTW am and still adjusting to his new haircut. He now looks like such a little boy. NO MORE BABY.

Isaiah is still leaking tons. I am just so unsure about what to do. I don't feel like putting another hole in him is going to solve our issues. I do believe that his motility has slowed down which is to be expected with mitochondrial disease as it takes alot of mitochondrial to move food down your intestinal track. This is why I feel that he is leaking more b/c the food is backing up a bit. So I really don't see how putting another hole with solve this issue. I want some motility testing done to prove it before I even consider surgery for him. The last surgery I consented for him was his fundo which I felt like I was pretty informed although little did I know there was much more to know and this is why Isaiah retches so much now. So I will not do something that will potentially harm him more. My other concern for him is his gut slowing too much and will eventually just shut down meaning there is no way of feeding him except through an IV which would be a complete nightmare. Currently many other mito families are faced with this. I just hope it is not us. So plenty of research to do before I make any decisions for my man.

It is so hard always needing to make these tough decisions for our kiddos. My mind feels like it is so fried at this point. Rick and I are hopefully going to the hotel for some R&R this weekend.

Also the night nurse started and she did fine. I actually had no problems sleeping through the night. We put Avery in the side room off the great room w/ a bed a chair for the nurse. THis works out great b/c we cannot hear her and she has everything she needs. Janessa is also thrilled b/c she gets to sleep upstairs in Avery's bed when he has a nurse. So the whole house sleeps peacefully at least 3-4 nights a week. YAY......

OH NO!!!!!! What did I do?????

Avery's hair was starting to look like Don King so I decided to cut it with clipper. I used a size 3 guide. I just want to cry. No More Curls. It looks terrible. Sure hope is grows fast.

The sideways picture is the before and the other is after.

Woooohoooooo!!!!!!!

The sudafed seems to be working. I am so happy. Avery has not needed suctioning in days. He sounds so good. I have not heard him sound like this since probably March. It is amazing that something over the counter with all the meds he takes could be the most useful. I pray that it lasts. Although I do think he has a bit of a stomach bug going on b/c he stomach is so loud and he is pretty cranky with terrible gas, but honestly compared to the respiratory stuff this is nothing.

Friday was such a busy day at home. I had the nursing agency come out with their new nurse to get going. Made a ton of calls for the boys and then the Pallative nurse. She is going to be great for us. Alot of the same philosophies and she has tons of experience. Avery was very unsure about her b/c of course he thinks she is there to hurt him. Poor kid. She is going to come often to get to know him. She will be able to assess him at our home and call the Pallative dr. for meds. Hopefully getting us to say home as much as possible. I am pretty confident at this point that we will not live in the hospital this winter. We have worked very hard to keep him stable to home and it seems to be working. Just hope I can keep Isaiah out of the hospital and avoid surgery for him.

The new night nurse actually trained on Friday. I think she was a bit of a deer in the headlights. My nurse that was training her was saying she was asking "if he EVER sleeps through the night". DUH... that is why we need night nursing. I think she is pretty overwhelmed by all of his equipment. I don't have much confidence that she will last but that is the good thing about agency is that they will have someone new out for me b/c they want the hrs. filled. It is just so unnerving having people you don't know taking care of your kid while everyone is sleeping in your home.

Hopefully it is a quiet week around here. But, then I would have nothing to blog about. LOL.

We got squeezed into the GI dr for today which was quick, much better than Feb. Although they made sure to take their sweet time getting to us (1.5 hr wait). It was perfect timing though b/c Isaiah had not been fed for over 2 hrs and he is usually fed hrly and his shirt was already soaked from his tube leaking. He has over 60cc of residuals (food left over from the last feed) this should be digested quickly but apparently is not and is one of the reasons he is leaking so much. We talked about the increased amount of retching so he prescribed another med to try for a longer period than we did the last. Funny thing is he said " I am going to list some meds and you are going to tell me if you tried them and what affect they had". Well after 6 meds, he kinda chuckled like "we are screwed" gotta love it. So we went back to one that we have tried but for a longer period. He also added another med that he used to be on to help with his motility. But the kicker was he was very concerned about the amount of leaking. He said that buttons as his can form scar tissue under it and the hole will never get smaller but it could get bigger which is an issue. So his suggestion was SURGERY. UGH. UGH. UGH.

He wanted me to consult with a surgeon he has worked with before with this specific issue. They will basically close up his current hole and put a new one in. I so don't want to put Isaiah through sugery. He has not has any procedures since he was 2 and I like to keep it that way. Unfortunately it sounds like my only option. Although it is not a major surgery it is still surgery. I guess I am so used just being in the hospital with Avery that it is really hard to switch kids.

Avery was not scheduled to see him but I asked some questions about him and he was glad to answer them. I asked him about deep oral suctioning vs. nasal suctioning and what would be the preference. He was not thrilled about deep oral suctioning especially with his reflux issues. He suggested we back off a bit b/c he heard his cough and it sounded irritated, I was in agreement with it. He is also concerned about aspiration b/c of the gaging. Avery is scheduled in Dec. for a swallow study so that will be interesting. I am just hoping that the sudafed kicks in and we can start giving it twice a day and back off of all of these invasive interventions it is so heartbreaking for him to have to go through it. He was pretty clear today and we started giving his zyrtec with it. Poor kid was just overtired from the day. It is so much work for the boys to be out a drs. all day now. Very exhausting for them. That's it for now.........

Update

We were able to avoid the hospital which I am so thrilled about. Avery never spiked a fever after that and was fine. I am really thinking that he had the adverse reaction to the sudafed. It is supposed to be a nondrowsy type and he is drowsy BUT it did clear him up which was our intended purpose. He has over 6 med allergies but I am not ready to add this one to the list yet. I did an experiment and did not give the sudafed on Monday and he was super junky all day but did not nap and had GREAT difficulty going down at night (took some good meds. to do that). Today I gave him a little less of the sudafed and he was totally clear all day requiring no suctioning at all. BUT... he was drowsy and kinda out of wack. He got junky for bed and still needs the O2 b/c he has been dropping to the 70s and he should be above 95%. So tomorrow I am going to try half of the dose and see what we get.......

Isaiah is no longer retching which is fabulous but..... his motility (how well he is digesting his food) is horrible. It is causing his g-tube button to leak copious amounts of formula and food is taking much longer to digest, also his bowel sounds are low. I put a call into the dr and they could not get us in until Feb. Well obviously that is not going to work so I called the GI nurseand they will squeeze us in soon. So I am not sure all these retching episodes which have been alot lately are migrane related or stomach related at this point but we need to figure it out.

As for me, I was feeling pokey all day and pushed myself to workout with the trainer. BOy was that a big mistake. I swear I was going into diabetic shock during the workout. I was sweating tons, dizzy, so nauseous and could not see right. We had to end it and get plenty of sugar in me. I felt like complete crap the rest of the night. Now I have worked out much harder than that and never experienced that before. I ate well during the day too. SO no idea on that whole episode but definetly weird.

Janessa FINALLY lost her front teeth, I will post pictures. But man is our tooth fairy rich (daddy) this is her 3rd tooth and she got 10 bucks again. If it were me I would have given a buck or two. LOL.

So Mr. Avery..... Since he got his port (central line) in May it is supposed to be accessed and flushed once a month. We we have never had to do that at home b/c he has always gone into the hospital at the 4 wk mark. Well, what do ya know..... It is 4wks today and he has a fever. He has also never finished his 8 wk. course of med. for his c-diff. He has one week left and may need to go on another antibiotic for an infection which will start it all over again. UGH. UGH. UGH.

Both he and Isaiah had a great morning as usual and by 2 it got crazy. Avery was napping over 3 hrs and I thought he was awake b/c he heartrate was high. But I went in his room and he was still asleep. Not a good thing. He got up and was happy but breathing very fast (70 bpm) which should be in the low 30s for him. So I checked his temp and it was very low grade but within 20 mins he shot right up. We gave him motrin and extra fluids and he was still working hard. My pallative care nurse happened to call during this time and she wanted me to bring him in but as usual, I will see how he does overnight b/c I am not sitting in 2 different ERs and not getting a bed until 5am in the morning. No thanks.

We were able to break his fever for now and he is resting on bipap. If he has another fever tomorrow then the bag is already packed and I will bring him in. I am hoping that it was just a fluke b/c he has had fevers before and then completly fine the next day. Problem for him is a fever alone could cause him to become rapidly dehyrated and then acidotic and very ill fast. He has some junk in right lung so I am thinking it is another pneumonia especially if the fever persists. UGH, UGH. We will have to go to ICU or ICP b/c he is on bipap.

Isaiah is still not feeling well at all. I believe it is his long migranes.

I would appreciate some staying home and good health vibes my way. Thanks.

Things have been fairly stable around here (Well in our crazy normal way) Unfortunately, I think Isaiah is suffering from his cluster migranes though. He has been retching daily since tues. Poor kid. It is really time to see the GI dr. I hate to see him like this. On Frid. night my nurse said he was rolling around just crying his eyes out. Isaiah NEVER cries so if he does it is very alarming and also so heartbreaking. I cannot imagine what he feels like. I am also thinking that down the road we will have to get a port (which is a central line for him) for home fluids b/c everytime he retching we have to dilute his formula and the kid is already so skinny as it is. It is not dire right now but I can see us heading in that directions if things continue for him like this.

Avery has had alot of secretions in the past few days. He has been able to cough alot but has needed alot of suctioning as well. On friday night my nurse had trouble keeping up is oxygen levels but she has become such an expert at it that by the time she is done he is sleeping restfully on the bipap. It is so good that we are able to maintain him at home b/c we would seriously live in the hospital with him. He has also been suffering terribly from night spasms which usually occur at 2-3 am causing his great pain about every 20 mins. Thankfully my night nurses are starting this week.

We also had a visit from Pallative Care which is different from the hospital one. They are from the Dept. Of Public Health. It will be a nice added service b/c the nurses and drs. make house calls and will keep a close eye on us. They also have an expressive play therapist for Janessa. Volunteers to help me do laundry and cleaning. YAY.... and a Social Worker for Rick and I. So it sounds like we are all set up.

Basketball is starting in about 6 weeks which is exciting but I am nervous about our schedules at the same time. I just pray that we can keep Avery home as much as possible this winter. I would hope with how well he is cared for at home that we may see much fewer hospitalizations. I am just so done with being there at this point and so is the whole family. But I will think positive thoughts and just look at the day I am in (which is hard to do for me) but it sounds good anyway.

Yesterday was definetly an odd day. Started off very sleep deprived as usual, poor Avery. I slept in the bed with him b/c he was up screaming hrly. He falls asleep and is awoken by a full body spasm (arms and legs straight out and screaming) I gave him meds. but didn't seem to help. So either he is struggling respiratory wise or in pain.

Then this odd man in a truck pulled up to where all my trash was as it was trash day. I thought he was hungry or something but nothing in there except tons of pooping diapers. He took a trash bag. Dingy me thinks nothing of it until my nurse mentioned identity fraud, so now I am freaking out. Off course it would be us that would have our identity stolen.

Tag we are it!!! According to my friend Robin. Remember the little girl vomitting at Nessa's party. Well poor Isaiah is the "it". He was retching all day yesterday with very nasty poop. I can only assume he has the bug. Luckily he does well with being ill.

Avery spent the day being very junky and needing tons of suctioning throughout the day which is not his favorite thing.

I had a blasting headache and was seeing spots. Apparently I did not look good at one point b/c a girl at the grocery store asked me if I was okay. Musta look like I was going to pass out or something.

Worked out some stuff between my nursing. You know how us women can be. I think most of our problems would be solved if when an issue came up, we just deal with it right then and there. Hopefully we have some harmony now b/c it is a must for this household to survive.

Also had a guy come to fix my furnace b/c one of the zones was not working. You know that cost an arm and a leg.

Let's hope today is a less interesting day.

For bedtime we drugged up the boys, to bed and I was in bed by 8pm. What do ya know......They slept ALL night for the first time in weeks.

Things are actually pretty quiet right now. Meaning, no hospitals or major disasters. Avery is his typical junky self and still waking up tons at night or desatting (dropping his oxygen levels which is not good) but at this point I am so used to it. My regular nurse has been here now during the night and apparently I wake up every coupleof hrs. saying " Is that you". So it will obviously take me some time to get used to night nursing. While she has stayed, she has had to adjust is bipap mask every 15-20 mins (No wonder why I don't sleep)....

Rick and I have been having alot of talks lately. You know the ones that you really don't want to have but need to have. We have been really thinking about if Avery does die, is it better or worse for us and Janessa if it happened at home or in the hospital. Again, not something that you want to discuss but have to. Her social worker came today which is so good for her. I asked what her experience was with this and she said that siblings tend to do better if the other sibling dies at home and they are part of the process. Something about that is just not right to me. I mean if I had a choice, I really think it would be in the hospital and have Ness come and say goodbye while he was on a vent. But who really knows what the right thing is. This is when my faith kicks in aand praying that God knows how he wants it to go down.

We also discuss cremation vs. burial. Again, all really icky things but a fact of life. We are all going to die at some point. Never could imagine that I would have to have these discussions but we have too.

I am really trying to enjoy all of his good days b/c we have been getting alot of that lately and cherish all of it. But I also have to be realistic at the same time. KWIM (know what I mean). Every day is a gift for sure.

Nessa's Party

Happy 8th birthday Janessa

I just cannot believe my baby girl is 8 yrs already. Time surely flies by. We are so very incredibly blessed to be her parents. She is truely something else. I am amazed with how bright, funny, and outspoken and I could go on and on about her. Did I mention the attitude though. We are in so much trouble. But in all honesty, she is a good kid and going to be such a caring and understanding adult b/c of her life. We love you so much.

You can call me crazy. I had NINE kids sleeping over last night. Ahhhhhh........
They settled down by 11 pm which was not bad and were up at 6 am which was good. Until...........

One of her friends got sick and vomitted chocolate all over my light colored rug. Ahhhhhhhh. Finally got it cleaned up and kids all back to their respective owners. I am driving the little girl home in RICK"s Jeep, when............................
She vomits all over his Jeep. Yup, so glad it was not my car. LOL

Janessa then got her gifts from the family. Overall it was a good crazy weekend. Enough with the sleepovers. I am too tired for all that.

Avery had quite a few blue spells this weekend but he certainly cooperated for his pictures. Please make sure you view them at the top. Enjoy.

The lack of sleep all week has really hit me today. I feel like I have been sleepwalking all day. I got a call from the agency saying that have a nurse or 2 for me from Wed, Thurs and Fri. night. One is a female who can't start for a couple of weeks and another is a male that will be ready sooner. Hmmm, such a dilemna. I would actually prefer the male b/c I think it would be good for Avery and for the other nurses. I just feel weird with Janessa at night, KWIM? We will see.

I am so glad that I will have a nurse for Janessa's sleepover tomorrow night b/c there is NO way that I could do w/out. Tomorrow is going to be crazy although as we are doing family photos in the morning and then the party later in the day. Then Janessa's real b-day is on Sunday so we will do our gifts then. Her birthday is usually a 3 day event. LOL


Currently Avery is pretty wired and not napping at all during the day b/c if the prednisone which is thankfully done tomorrow. We saw no positive change for him with it only lack of sleep which is not what we need. He is still desatting tons at night, I think the o2 is much better for him right now but we are still using the bipap to start with at night then I end up switching to o2 by 2am.

Wish us luck on our pictures tomorrow. I will try to post the finished product.

Hope you guys enjoyed the pictures, I think Avery is starting to figure out what the camera is (we all know Isaiah knows what it is). Although the nights have not been great b/c of all his desats, he has been happy during the day. I am really finding the straight o2 works better for him than bipap. He seems to have worse desats on the bipap. It is supposed to be better for him in that it expands his lungs as he is not able to do it himself but I think he is working against it. He doesn't love the o2 but has really no choice in the matter. I am hoping for a quiet night without any alarms going off.

Although we are approved for night nursing, we still have to find them which is the problem. Luckily I have at least 2 filled for now.

My mother-in-law birthday is tomorrow so I got her a coach bag. I went to Marshalls and they had the large cute Coach and it had a small mark on it so I asked the cashier if she could take anything off it and she said only 15 dollars so I tell the next cashier who was ringing me up and he thought I said 15%, so I went with it, Well by the time he got bag with the new tag apparently the next person thought he said 50% off. Yup, I got a new Coach bag for 50% off. So we give it as a gift tonight and Janessa was with me for the purchase and just had to tell grammy of our deal. ROTFLMAO........

So this coming weekend is Janessa's sleepover. I think I may definetly have to rent the hotel for that night, LOL. I cannot believe she is going to be 8 already. She is just so grown. I got her a look-alike American girl doll. She will be so happy.

Isaiah has had a great couple of days, he is still battling alot more retching spells but they seem short lived. No idea where they are coming from but they are manageable.

As you can imagine I have been on such an emotional rollercoaster. Some days I just want to cry and others I have no idea how to feel. The one thing I do know is that no matter what happens, Rick and I will get through this together.

Yesterday was Crazy

We went to the pulm. dr. (remember the one with all the crazy comments), well she still had alot of the crazy comments. Basically she said that they have no ideas for helping Avery at this point and was trying to give me everything under the kitchen sink to keep him out of the hospital. So sad. We are trialing prednisone, sudafed (she even suggested caffiene), they adjusted his bipap and increased his o2 requirements for sleeping. They also referred to him as the baby that had the ER in a panic. Nice huh,

We also discussed again some end of life issues such as intubation and what our thoughts and wishes were. Not your typical topic unless you are at the point we are at. It is surreal I tell ya.

We got home and Avery was totally exhausted which made for a bad afternoon. We was in distress b/c he had 3 large mucous plugs which it took 2 nurses to get up while he had periods of turning blue. It is really like a scene out of ER in my house these days. We have everything we need at home exception equipment to intubate. LOL. Okay I know it sounds crazy and unreal that I am talking like this BUT...... it is my normal crazy life.

Once he finally settled down last night the respiratory therapist came to the house and showed us some techniques. I really value their opinion b/c they are in the trenches with kids like Avery and know so much. So she basically said that with kids as progressed like Avery that we have some hard decisions coming up (like him wearing the bipap fulltime, it is just something you really reflect on as another reality check that this baby is GOING to DIE and as much as I say it is still so hard to swollow. This disease has spread like a wildfire. It's like I don't even have time to catch my breath before another crisis hits.

So at this point he is on bipap and o2 for sleeping at all times. We will just see what the next step is and take it day by day and moment by moment.

It is hard..........

It was so good to get uninterrupted sleep at the hotel last night. I really think we are going to do this 2x a month. We were only 5 mins down the road which was nice too. So glad we were night home b/c apparently the boys were both up playing last night. Yikes.....

Avery had a pretty good weekend. He is still requiring night o2 and even some during naps. We are in to see the pulmonologist in the morning. I am bringing his bipap in b/c I think it needs adjustment b/c he is desatting while on it and requiring 4-5 liters of o2 to keep his sats above 95%. I will be interested to hear her thoughts compared to our last visit before the recent hospitalization and changes. I am sure it won't be earth shattering but I still like to hear her thoughts on things.

Hopefully the agency will start getting night nursing in, we just have to start rearranging the boys rooms to separate them b/c I don't want Isaiah woken up by the nurses and Rick and I would like to maintain our privacy. So we have some figuring out to do with the room. Luckily we have 4 bedrooms and a separate living area downstairs.

So nothing else too exciting these days.

The last couple of nights have been horrendous. I have not slept much at all, Avery has been up hrly screaming or he he desatting. I am pretty much a zombie. It is just so difficult b/c despite my fatigue, I HAVE to work or go to drs. appts. People always say " I don't know how you work and take care of your family". It's not a matter of choice but a necessity. If I don't work, then we don't survive finanically. So it is alot of pressure. Now don't get me wrong, I like tha fact that I have a career and work. It gives me my individuality and I know I can always take care of myself. But at the same time after not sleeping for days, I surely wish I had the choice of not working. But it does not work that way.

There is a light at the end of the tunnel. My nursing case manager came out today to evaluate the boys hrs. Isaiah's hrs. stayed the same which were fine and Avery got a huge increase in hrs. So now I can get 6 night of nursing and not comprise my day hrs. I have one of my nurse covering a couple of nights and I have already called an agency which will cover the remainder of the hrs. So it will be an adjustment and alot of moving around of the rooms but sleep is so much more important at this point.

Boy you really don't realize how much care your kids are until you have to lay it out to someone else. The poor woman was so overwhelmed by all the care and hospitalizations.

Also I am having my nurse start tomorrow night and Rick and I are renting a hotel just to sleep. Cannot wait.

On a HUGE positive note. My sister had a healthy baby girl on thurs. Demi Alexandria born weight 6 pounds and 11 ounces. All is well and she sure is a cutie. Can't wait to meet her. Congrats to the family. We love you all.

Update

I could really jump off a bridge right now but I actually have no energy so falling over would be my next option. Well, it is not that bad But... I have literally not slept in days and still working.

Avery was up all night last night. Took him to the pedi's today and ran some lab work. Turns out his hemoglobin is fine but his WBC his very high indicating an infection. Not sure if it viral or bacterial but from looking at his labs from a few weeks ago it could be bacterial. Of course they wanted me to run him into Children's, which I have not. He is not running a fever and actually looks slightly better. They ran blood cultures so I am just going to wait it out until he starts showing that he is sick. I know this sounds bad but I just am so sick of being in that hospital and I don't feel it is warranted yet.

My nurse's father died last night. She will be out for a few days. I feel so bad for her b/c it was kinda sudden. My prayers are with her and her family.

Isaiah is back to retching pretty bad today. I just really want to pull out my hair.

So as you might expect, no concert for Rick and I. Yet again we have to cancel plans. Sometimes this is the most frustrating part about this life that we cannot complete any plans. I just give up on making plans with people anymore b/c I usually end up in the hospital.

I just really really hope to get some sleep tonight b/c if not I think I will die of exhaustion if not.