Wednesday, March 31, 2010

It has been a crazy filled few days. Victoria had her abdominal ultrasound on Monday and her spleen is indeed enlarged. Olivia went to the pediatrician yesterday to have her blood drawn to check for mono. Of course that came back positive this morning. The doctor said she is in the recovery stage and that means she has had it about a month or so. That matches up to when everyone started getting sick around here. She also said it could take as long as a year to completely recover. I can't imagine this going on for a year. Yesterday both girls were fairly perky but today they are still sleeping at 10:30 in the morning. They have been asleep for about 14 hours. The doctor said that the good days will wear them out and it will be a long time before their stamina is back to normal.
Unfortunately, both pediatricians (there are two in the group) have now both said that dirt bike riding is out. One said for at least a month the other said for six months. That means most of riding season is gone for this year. Mike has just bought his off road bike and a trailer to hold all 3 bikes and was planning many fun mini-vacations for the 3 of them. Now we'll just have to find some other more easy going fun things to do. Boy do I wish we still lived close to the beach.
I spoke with the ENT and the pediatrician; they both feel it is ok for Victoria to go ahead with the adenoid and tonsil removal next Wednesday.
Next Monday Tomas gets clearance (fingers crossed) for his surgery, then we meet with his surgeon on Tuesday, and Victoria's surgery is Wednesday. I'm sure she's going to feel puny between the mono and the recovery, but she would have been in bed anyway and at least this way I'm hoping to avoid any more of those nasty sinus infections she gets.
I have told God that this is enough and I hope He doesn't think that I can handle any more. I appreciate that He finds me this strong but hope He has no plans to make me any stronger. Of course, this is when that famous sense of humor comes into play.

Saturday, March 27, 2010

There oughta be a law

against all your children being really sick at the same time. Just to preserve the sanity of mothers. Ok, here goes -
Victoria - began complaining of a stomach ache and running a fever yesterday morning. After several sick to her stomach episodes I took her to the doctor. She went to the doctor for the first time on Feb. 26th and has been seen 5 times since then. She tested positive for mono. Yes mono, she's 7. The doctor thinks her spleen is enlarged which is causing her pain and she has to have an ultrasound done on Monday morning. She also had her CT scan done last Friday and it showed massive fluid build up and chronic sinusitis, so out are coming the tonsils and adenoids on the 7th. So to sum up for her, mono, RSV, and chronic sinus infections with a surgery in 11 days. She is very weak and rather pathetic and is breaking my heart because she was always my "go, go, go" girl.
Olivia - by default has mono and had RSV. She is doing better with the mono than Victoria but definitely has her off days when she is very tired. I mean the kind of tired where she stays in bed all day and doesn't want to go play with her friends or anything. Now, RSV in older kids is really just like a bad cold and Victoria made it through that without anything more. But Olivia has significant asthma which is no longer under control due to the RSV bout. That is why she keeps wheezing and her lungs are itchy and she keeps asking for CPT. She has a chest x-ray Monday morning to make sure that is all it is, and has started the dreaded oral steroids. Orapred is a definite love/hate relationship. It works to dry her up, but it makes her a giant ball of emotions run wild. So, for Olivia - mono, RSV, and an asthma flair up that still isn't under control.
Tomas - If he has/had mono I couldn't tell. Luckily, it doesn't really DO anything to you except make you tired (sore throat and fever in the beginning - but we are well past that) and give you the enlarged spleen which goes back to normal eventually. The RSV episode still has his airways slightly inflamed and the doctor said that could take up to two months to go back to normal. He is already a month out and getting clearance for the surgery in 2 weeks, so by the time he is on the schedule he should be fine. So, for the time being he is the healthiest of the bunch, which is quite funny in an ironic kind of way.
Me? I'm just rolling with it. As I posted on FB this morning if I wasn't living it I wouldn't believe it!

Tuesday, March 23, 2010

But why are they still sick?

It has been a few days since I've posted but what little free time I've had I've spent curled in a corner asking "Why, why, why?". Ok, not really, but yes they are STILL sick.
I took Victoria for her CT scan on Friday. Yesterday Tomas and Victoria were at the pulmonologist's office bright and early. Tomorrow I have a phone conference with the ENT to go over the results. Thursday all three have dental appts and Friday I have to bring Tomas back to the pulm. Add 4 therapy sessions and 2 extracurricular activities into the mix this week and you can see why the corner is so appealing.
The pulmonologist said Victoria's asthma is minor but she has a prolonged exhale so whatever is going on with her sinuses is starting to take it's toll. She adjusted meds and increased treatments until her sinus issues are under control. She also thinks that the girls may have mono or walking pneumonia, especially because they are so tired still. She started them both on antibiotics to cover the mycoplasma (pneumonia) bacteria just in case, because the two courses they've already had didn't cover it. Yesterday afternoon Olivia told me she felt a small wheeze and the inside of her chest was itchy and can I please do CPT on her. She HATES CPT, I almost fell over. I called the doctor to find out if I needed to do a treatment first or if I could go straight to CPT. She said to go ahead and do the treatment first, and then asked me "But why are they still sick?" I told her she was supposed to tell me, and that was the million dollar question.
Over the weekend Tomas started getting stuffy again, so on Monday morning he was SUPPOSED to start his Synagis shots again, but the pulm. said he was getting sick again so no go. He was started on two more weeks of antibiotics and she is going to recheck him on Friday to make sure they are working. If they are then he can get the shot and get cleared for surgery 2 weeks after that. If not, who knows. His heart rate is so high though, everything is squishing into that little chest cavity and his heart is getting smooshed. He really needs the surgery as much as it makes my stomach hurt just to type that.
So, until the dust clears I made a medicine chart for my little asthmatics (they are not contagious anymore even if it is mono or mycoplasma - but their asthma flairs and makes it harder to get all better). There are 30 medicines I'm doling out every day, and 4 CPT sessions ( 2 for Tomas, and 2 for Olivia). A lot of them are pulmonary and go in the nebulizer, and some the girls can do on their own if I make sure they remember them. It really is crazy, but I'm good at crazy, had lots of practice over the years.

Tuesday, March 16, 2010

We have had several ordinary days around here. Yup, you read it right. I did school with the girls on Monday AND Tuesday. Can't remember the last time we had two days in a row. We had fun making barometers and making messy goo while learning about surface tension. We made yummy chocolate chip bars and I did laundry AND dusted. I'm telling you - I feel almost domestic.

We only had 1 doctor visit this week and it wasn't for Tomas. Sweet Victoria still has something going on with her sinuses and I took her to see Tomas' ENT today. I thought it was her adenoids but he said he didn't think it was that simple. IS ANYONE SURPRISED??? He ordered a CT scan and told me to bring her to the pulmonologist because her incessant cough is a hybrid of her asthma and whatever she's got going on in her nose. So she and Tomas are going together on Monday morning at 8 am. It is the only new patient appt. the Dr. has that week. I can be ready to go at 7:30am, Tomas can be ready to go at 7:30am, but God please oh please help me get Victoria ready to go at 7:30am. She coughs so much it takes her forever to fall asleep and then she coughs in her sleep so she is SOOO tired in the morning. Most mornings she sleeps until 9 or 10 and then it is another hour before she is moving around much. It was a little better before she got sick, but now forget it. Thank God I homeschool.

Isn't she pathetic? I actually bought her a Barbie doll today and she probably has about 50 already. I haven't bought her one in a long time, but everyone else does (and you all know who you are) because she loves them. But today I couldn't bear it. So she got a Blingdom Barbie with a glitter off the shoulder shirt and a little pink froo froo poodle - Oh if you only knew how that makes my skin crawl. But she loves it. She is still sleeping with the mermaid one her Abuela bought her back in Jan. so now she has to make room in her bed (actually my bed as Mike is out of town) for one more. Anyone every get a Barbie hand jabbing you in the back in the middle of the night?
Olivia and Tomas are fine. The ENT even checked his ear tubes just in case they needed fixing, he was going to do it during the surgery. But they're good so no need. Yeah! He wants to do another sleep study about 3 months post op to see if fixing the reflux helps with the sleep apnea. Wouldn't that be wonderful - no more oxygen???

Sunday, March 14, 2010

Here's the dancing video - took me forever to figure out what was wrong!
video

Saturday, March 13, 2010

Alligator Death Roll

Well, we saw the pulmonologist yesterday and she said he sounded great, but was still having trouble moving air. She said it was from a flair-up of his reactive airway disease due to the RSV. I need to keep up the increased breathing treatments for another 2 weeks and then he should be well enough to get his next Synagis shot. It so stinks that RSV is something you can get again. She told me he was very sick. I wanted to say "Duh!" But really, if it weren't for her he would've been in the hospital. I mean what other doctor is even in thier office at 8pm, much less tells you to bring your sick kid in. I would've gone to ER, he would've been admitted and we both would've spent several sleepless days at the hospital. I'm very grateful. She also said in 1 month she will clear him for the surgery, and to make sure his ANC is cleared by oncology before the surgeon adds Tomas to the schedule. I'm glad for the month respite to catch my breath, get the girls 100%, and get back into something of a routine for a while.
While all the illnesses have been raging through Tomas has decided to hit some milestones. He has started dancing to music, shaking his head "no" to any question you ask him, and initiating the alligator death roll during diaper changes.
Those of you not from FL may not be familiar with this developmental milestone. It is defined as the act of spinning and convulsing wildly . Gators do this to kill their pray, babies do this to kill their parents. Gators do it to make small chunks fly off their prey so they can eat it, babies do it to make small chunks of other stuff fly out of their diaper so parents never want to eat again.
I got the dancing on video, I'll spare you the death roll.

Sorry can't get the video to load, I'll try again later

Thursday, March 11, 2010

Tomas continues to improve and tomorrow he sees pulm. to see how his lungs are doing. His oncolgy visit went great. His RBCs are up, platelets are up and even his ANC is on the rise. With the new trend he can now go to visits every 2 months. They also don't feel the need to do a bone marrow biopsy now, and since he has so much else going on for the upcoming surgery it can wait (hopefully forever). I should be happier, well I am very happy about the biopsy, but not with the office visits. We had to switch oncology groups back in Sept. because the first group stopped taking our insurance. Since then we have seen 3 different docs at the new group and they all have something different to say. First one said once a month, second one said once every six months, first one again  - back to every month, today third one said every 2 months. Please don't get me wrong, I am gratefull and thrilled his numbers are good, but I do not have a comfortable feeling with the consistency of this group.
Both girls are sick again and Victoria was running a 102 fever this morning, so squeezed them into pedi before the oncology appt. Victoria has a bacterial ear/nose/throat/gland infection and Olivia is sporting a viral upper respiratory. Bacterial is bad because of the neutropenia (though Tomas' numbers are near normal so I hope all will be ok) so she is wearing a mask. Well at least she is supposed to be wearing a mask. She is quaranteened in the guest bedroom though, so hope that works.
Thankfully, I stocked the candy dishes two days ago with goodies from the grocery store when everone was feeling perky. And I bought my husband's favorite jalapeno pretzels. Too bad he isn't coming home until tomorrow and they will be long gone. I really can't believe they are sick again. They were better for two days. Most likely they were never REALLY better, but sheez, cut me some slack here.
And yes this is an unabashed attempt at garnering all the "oh, poor baby"s I can. I shall then count them all up, tuck them into my apron pocket, and if you all have done a good job, I shall feel better.

Wednesday, March 10, 2010

Digging out

Ok, for starters. RSV stinks! I am slowly digging out of the germ pit we have all been living in for the last week. Tomas' nose has dried up, but he is still retracting and coughing a lot. He has a pulm. appt. on Friday, his O2 is good though so I don't think I need to move it up. The girls finally perked up yesterday and we all went outside for the beautiful weather we had.  I feel very fortunate that Tomas made it through without needing to go to the hospital. We had everything here we needed to care for him (except for the wakey-wakey fairy who could wave her magic wand and make mommy not be too tired to give baby his 2am breathing treatments - I stopped doing them 2 days ago, and he is not any worse so I'm rolling with it). Mike stayed home last week and just left yesterday for CO.  Hopefully, a few more days and we'll all be 100%.  Tomorrow is oncology and I will find out about the bone marrow biopsy but for now I'm just happy we made it through!

This was his one and only bath during the RSV week (as it has become know around my house!)
He REALLY enjoys the water.
I have cut his hair twice already!
I was getting my coffee this morning when Victoria came out and said Tomas was awake. I told her I know I'll be right there. I went in to the bedroom and found this! She had sat him up but didn't feel it necessary to remove any wires! He had added to the mess by grabbing the baby monitor.
Can you believe I didn't get up at 2 am to do a breathing treatment for this face???

Monday, March 8, 2010

All right, Tomas' nose is finally starting to dry up. He is sleeping better than he has in days which enables me to finally THANK Stephanie for nominating me for the Beautiful Blogger award.


The rules to this award are: (followed by my commentary)

1. Thank the person who nominated me for this award. (See above - I am so very glad to have blogfriended you - just wish RI and TX weren't so far apart)
2. Copy the award & place it on my blog. (Depsite my best efforts and some help from Stephanie, I simply can not get that picture to paste on this post. I do not know why, I do not want to know why, I merely need to move on so I can stop obsessing about blog buttons)
3. Link to the person who nominated me for this award. (I did figure this one out so I will consider that my success)
4. Share 7 interesting things about myself. (See below)
5. Nominate 7 bloggers. (Here's the thing, most of the blogs I follow were already nominated. I just started following some different ones but I don't know the writers well enough  yet - so I'm going to have to break this one)

7 interesting things about myself:

1. I am a procrastinator extraordinare - which is why it took me seven days to pass this on.
2. I homeschool.
3.My husband and I have moved 5 times, lived in five states and owned 5 houses. All him, I just follow along.
4. I can not stand when things are crooked in my house. Pictures, beds against the walls, chairs not lined up properly. This is more of an OCD type thing, but my husband finds it amusing.
5. I used to speak italian conversationally, but it has been so many years I've lost it. Every now and then I dream in italian and understand everything but can't remember a word after I wake up.
6. I love math and numbers and after my kids are grown I hope to teach math in grade school so more people will love it too.
7. I thank God for all the beautiful moments in my life. When something sweet, our touching, or sunny, or happy, or whatever crosses my path I offer up a  quick thank you to the Lord for making so many lovely things here on earth.

Now for the nominations:
1. I have to start with Heidi. She was the person who called me back when I called our local DS guild and just needed to hear that things do get better (medically speaking) with our babies. Her Henry is the picture of a strong, healthy 2 year old. It is her oh-so-lovely blog that made me turn all my email updates into my own blog.
2. Cheryl at Ruby's Life. She lives fairly close and I look forward to meeting up with her one day.
3. Here is where I break the rules, this isn't really a nomination but please go check ou this site and pray for this family. We have known them since before we all had kids and there little boy needs heart surgery. Jen is a great friend, an amazing mom, and surrounded by boys!

Thanks,
Dorothy

Friday, March 5, 2010

He's getting better!

Much to my surprise the doctor was pleased. Tomas IS breathing harder and moving his chest more but she said he had cleared out  a lot of the wheeze she heard the other day. Hooray, hooray, hooray! Just to keep on doing everything we're doing and she'll see him in a week. She said she would like to wait a month before she clears him for anesthesia and to co-ordinate with oncology because the oncologist told the pediatrician who told her (how's that for heresay!) that he wants to do a bone marrow biopsy. He goes to oncology next week so I'll find out what that is all about.
Tomas is a LITTLE bit worse, but the doctor did say that the virus hadn't peaked yet so it is not unexpected. He has a checkup this afternoon and we'll see...
Today I am thanking God for two beans: the coffee bean and the cocoa bean!

Thursday, March 4, 2010

The details

So yesterday was a gradual transformation from a runny, crusty, I have a cold, baby to one who was coughing so hard and so often that his face is broken out all over with petechiae. He went from runny and drippy to a thick goey paste that he was choking on. In the early evening he had a coughing fit that lasted so long he could not catch his breath and turned purple (really purple) and desatted down to 79. I paged his pulmonologist and ran around throwing a bag together. Mike did not think he was stable enough to drive so I was going to call an ambulance once the Dr. told me what hospital to take him to.
When she called back she said that she had called his pediatrician and discussed everything with him and that they both wanted Tomas to go to his childrens hospital. That is about an hour drive. But the pulminologist was still in her office so she wanted me to bring him there first to make sure he was stable enough to drive to the hospital.
While I was waiting for the Dr. to call  back my husband squirted Afrin up Tomas' nose. I didn't think it was a good idea because it was made for adults and also he aspirates everything liquid and who the heck knows what would happen if you get afrin in your lungs. It did make a difference though; he stopped coughing and gagging and choking and just about instantly fell asleep.
When Tomas and I got to the Dr. office (Mike stayed home with the girls), Tomas was pretty settled down and I thought "Great, she is never going to believe how bad it was!"  But he was retracting and nostril flaring and head bobbing and doing all the stuff he always done when he is working too hard to breathe, and then came up positive for the RSV swab. She said he is wheezing and he wasn't the day before when she did her initial exam. So here was the choice she gave me. We can put him in the hospital, because RSV peaks between  day 3 and 5 (and yesterday was day 2) or we can try to keep him home but I would have to work around the clock with meds and breathing treatments to keep him from getting worse.
Honestly, I was so tired I was ready to go to the hospital, plus when he shuts his airway down during those choking spells it scares the daylights out of me - he has always done that, and I don't know if any of you have ever held your baby when he is purple and limp but it is downright awful. I told her all this and she said she agreed except for one thing - his neutropenia. We all know hospitals are germ factories, and she told me it really should be the last place he should be right now because RSV makes the mucosa so pastey and thick that bacteria gets trapped there, and with his ANC down he would have a hard time fighting off anything he was exposed to. Great, guilt!. Well of course I'll keep him home. So she called in a bunch of meds to the 24 hour pharmacy (it was around 9:30 by then - have I mentioned she is an AWESOME Dr.) and we were home by 11. It was a very long night but Mike was just as involved as I was so each of us got a little bit of solid sleep. Tomas is stable this morning and has not had any moreof those huge coughing spells. He is still breathing pretty hard and a nasal disaster, so we will keep working even harder and hopefully it will work!

Wednesday, March 3, 2010

Tomas has RSV

I will add more details later. It is already settled in his lungs BUT he is home for now. His Dr. is being VERY aggressive with lots of meds to keep him out of the hospital. Please pray for him (and me as I have had very little sleep the last two nights and will have even less for the next few). Thank you.

Tuesday, March 2, 2010

This is really long

Well, Olivia is fine, she has a minor sinus infection but the doctor put her on antibiotics just because of the upcoming surgery. With spring right around the corner I am going to go out on a limb and say that this will be her first winter without pneumonia.  She finally has a great doctor and an excellent, aggressive asthma action plan ; with every follow up her small airways grow stronger and stronger. I remember telling people when she was little and we really had no control over her asthma that is was one thing to worry about your kids having a cold but a totally different thing to worry about whether your kid is breathing. That would be God's sense of humor again.

Speeking of kids and breathing, Tomas has a sinus infection but his lungs are clear (hooray!). Dr. B started him on antibiotics and ran a culture because she said he smelled like pseudemona. I didn't know it had a smell, I did know he has it but it has been a very small amount until now (and hopefully still is). She also ran an RSV test even though he gets the Synagis shot. He was due for his next one next week so she said there is a small chance it could be RSV, which would delay the surgery for 3 weeks.
And speaking of the surgery... Dr. B discussed the results of the x-ray and right lung issue. She spent a lot of time going over the films with the radiologist and they feel it is not his lung trapped with air that has herniated through to the left side, but his intestines that have herniated up to his chest cavity through the hole created by the hiatal (stomach) hernia. That makes 3 hernias in his diaphragm, part of the stomach  is up, part of the intestines are up, and part of the liver is up. She spoke with Tomas's GI and this new info was enough to get Tomas a clinical diagnosis of Congenital Diaphragmatic Hernia.
There are 2 main types of CDH,
1. Bochdalek hernia - an opening on the back side of the diaphragm, most often on the left side. The stomach, intestines and liver or spleen usually move up into the chest cavity. This account for around 90% of CDH cases.
2. Morgagni hernia -  This type is rare and involves an opening in the front of the diaphragm, just behind the breast bone usually on the right. The liver or intestines may move up into the chest cavity. This only accounts for 2% of CDH cases.
I could not find any statistics on what the odds were of having them both, but Tomas does. Stomach and intestines are on the left and liver is on the right.  Initally, Dr. B wanted to do either a barium study or a CT scan to confirm, but the GI said why use more radiation, the fix for it is surgery, and the surgeon is going in that area in 8 days. So in the end she just faxed everything over to the surgeon and I'll call to go over everything with him. I need to call pulmonology tomorrow to get the results of the RSV, and bring him back on Monday so she can clear him for surgery on Wed. He needs to be on the antibiotics for two weeks, but really he probably would have been on something post-op anyway. He is sleeping on my shoulder while I sit and type this out because he is too stuffy to lay down
Here is some of what Wikipedia had to say ( you can read it all here  http://en.wikipedia.org/wiki/Congenital_diaphragmatic_hernia#Morbidity_and_mortality ) :
Morbidity and mortality - Congenital Diaphragmatic Hernia has a mortality rate of 40-62% , outcomes being more favorable in the absence of other congenital abnormalities. Individual rates vary greatly dependent upon multiple factors; size of hernia, organs involved, additional birth defects or genetic problems, amount of lung growth, age and size at birth, type of treatments, timing of treatments, complications such as infections and lack of lung function.
Clearly the 40-62% had me a bit freaked but when I read more it turned out that most deaths occur in infancy and are due to lack of lung development. I am praising God tonight for a full term baby with fully developed lungs. I am praising God tonight for a little voice inside my head that kept making me nag at the hospital Dr.s until they had a pulmonoligist round on him when he was 5 months old, even though they kept telling me his labored breathing was just a Downs thing and would go away with time. And more than ever I  am praising God tonight for this first year with Tomas.
Oh, and Stephanie, I saw that you nominated me. Thank you! Now I am going to have to admit that I don't really know how to blog. As soon as I figure out how to put the links in the post I will send it forward.
Ok, so everyone is sick. Olivia, Victoria, Tomas, and Mike (I am hanging in there but only because I have been living on leftover antibiotics - sshhh...I know that nurse is around here somewhere). So I am taking the two delicately lunged children to the pulmonologist this afternoon. I talked to Mike this morning (in Arkansas) and he said he knew Victoria starting ballet would be a bad thing - he knew this would happen, and that he told me so. I told him to use his mystic powers to go buy a lottery ticket. I know I was supposed to marry him because really, who would get off the phone chuckling after a conversation like that? He can take any situation and put a negative spin on it - if you know what to look for it is really quite funny. Did any one see "Night at the Museum 2"? There is a part in there where Darth Vader and Oscar the Grouch want to join the bad guys. The leader tells Oscar he can't join because he's not really mean, just a little grouchy...The girls and I just looked at Mike and busted out laughing so hard!

On a more serious note, Tomas is pretty runny, crusty, coughing, the works. His O2 sats are still up, but his heartrate is way up too. I can feel some popping in his back, but I am hopeful it is just upper respiratory stuff. He is getting his Synagis shots every month, but I also know there are some other pretty bad viruses (is that the plural of virus?)  out there. If it is a nasty one it could delay the surgery. Ugh...