Thursday, February 24, 2011

Who is "worthy" enough for life?

I have pondered this with a heavy heart the past few months, time and time again I read and hear stories of babies who have "no hope" or "little chance" to be "normal" having to not only fight with their failing bodies but our medical system who deems them unworthy of a chance to see how far they can push their limits.

I look at my own son and I don't even want to think "what if?" because if fills me with dread knowing full well that our son wouldn't be where he is today.

My pregnancy wasn't the most ideal, and yes he tried to storm into this world every chance he got, but he stayed safely inside for 32wks. Even after my water fully broke at 31wks every scan showed he was doing marvelous, the day before I was 32wks they done a full intense scan to check everything, they wanted to send me home, the safest and most comfortable place to be to see if labor would finally come on. They spent a long time looking and measuring everything to make sure he was in perfect health before I was discharged. I can remember the tech walking me through everything "he's taking spontaneous breaths, that is good, we want to see that. His heart is prefect and functioning properly, his kidneys look great." she spent a great deal of time on his brain, "it's prefect, everything is the right shape, right size, see here? this is the right side, this is the left, this is the frontal lobe. It's the best looking brain I've seen!" I breathed a sigh of relief, my child was prefect, and he looked as ready as he could be for delivery at 8wks 1day premature....everything would be fine right?

I wasn't discharged until really late in the evening with a sign of things to watch for "If you have a fever over 102, if you go into labor, start bleeding, leaking a lot of fluid, have unusual pains, or he stops moving you need to come back right away! If you have any questions, you need to phone us." I laid down shortly after we got home but woke at 2am with a fever and in labor, my contractions were less than 5 mins apart, we raced to the hospital prepared to welcome our son into the world. When we arrived they hooked the monitor up wrong and even though by that time my contractions were less than two mins apart, strong, and long the resident told me I was not in labor. It took 45mins before the OB that was on call came in and all she had to do was look at me and told him "she IS in labor, move her to a birthing suite and start an epi and pitocin" I was 2cm dilated.

After I was prepped and we were ready to settle down and wait the nurse told me "I will turn that off so you can get some sleep" thinking she meant the TV I kind of laughed when she left the room and left it on. Mike shut if off and we laid down to sleep. The nurse spent most of the early morning just peeking her head in the door asking if I was ok, I was checked at 5am and was 3cm and she came back again at 8am and I was 4. At no point did she check the long feed of the monitor to see how he was doing, which I did find odd but who am I to second guess? she knows what she is doing right? At 8:30am, just before shift change, she came back in and laughed saying she better check the feed before handing off. The look on her face sunk my heart, I knew something was very very wrong. She picked up the sheet and quickly started going through it, going through mounds of print out before finally stopping. He was in distress, serious distress, and had been for 45mins already. As she ran to get the OB she told me I would need to be rushed in for an emergency c-section. When the OB came in she said the same thing but said she would check one last time to see how far I was dilated....His head was crowning, I was so numb from the epi I couldn't even feel the pressure of his head moving through the birth canal or shredding me to pieces.

I thought this was ok, I was fully dilated and he was coming out, everything would be fine right? right!?! The OB asked the nurse to call the NICU and tell them a preemie was being born, they failed to tell them he was already crowning, that he was in distress, and that they were needed ASAP. Instead of delivering him she did the one thing that I have read over and over again that should never be done, she grabbed a hold of his head and forcefully shoved him back inside me. With each contraction instead of allowing him to move down and out she pushed against the contractions to keep him instead. The NICU team finally arrived but her resident, who she wanted to do the delivery, was she made everyone wait until he was found. My son remained in serious distress the whole time. 48mins after discovering he had been in distress for 45mins already he was finally delivered...he was not getting enough oxygen for 1hr 33mins and had been forcefully kept inside my womb.

Nicky was quickly rushed to the NICU and was placed on CPAP on room air, hooked up to IVs and a feeding tube. I was so numb from the epi that even after it was removed and stopped I was numb for hours and unable to go see him. I finally had to lie and say I had full feeling back so I could go visit him after lunch, I still needed a wheelchair because I was still weak. The doctor came by to talk to us and told us how wonderful he was doing, for being 8wks premature he was huge weighing in at 4lbs 1oz and 17.1" long. It wasn't until a few days later I was told he had severe torticollis, he could not straighten his arms or bring them into his chest, he was in a "muscle man" pose and would need therapy to correct it. I questioned at this time if it had anything to do with the doctor ramming him back inside me and pushing upward on his head well I was contracting downward....I was told no, absolutely not, that anything could have damaged his neck muscles but it was not the doctor.

After just shy of 4wks he was discharged from the hospital, they removed his feeding tube (how he was getting most of his feeds) that day and let him go even though he still wasn't able to maintain his body temperature. In summer he had to be bundled as if it was winter or his body temperature was too low. Though I was happy he was being discharged I wondered if it was too soon, but I was glad to be out of there with him.

At his 2wks NICU followup clinic we were informed he would need to be seen in clinic for therapy and I would be given the exercises to do at home with him to fix his neck muscles. At around 5 months even though his neck muscles were better and he was starting to move them more freely he was lagging on other skills he should have developed and was moved to CCAC. This was our first break, since my in-laws lived in Toronto and we lived in Mississauga they cheated and put us on both waiting lists for therapy. The thought was we would go with whoever came through first. Toronto phoned a few days later and set up an intake appointment for the following week, Mississauga told us we were added to their waiting list.

Toronto was wonderful, we were up front with our worker and she told us that they would hide everything and not communicate with Mississauga so they would not know he was receiving care in Toronto and as soon as they had a spot we would switch everything over. Nicky received weekly therapy and was making very slow progress, so slow that when we went back for his discharge appointment at the NICU clinic we were told he had Cerebral Palsy and would be sent to a neurologist to verify the diagnosis. I questioned at this time if it had anything to do with his birth trauma, being without adequate oxygen for over 1.5hrs and being forcefully shoved back inside me could not have been healthy. I also asked for an MRI or CT scan to verify it. I was told that a scan was useless, most cases of CP show no signs of damage and they usually do not know what caused it, but it most definitely had NOTHING to do with his birth, or the doctor or nurses "screw ups" as I called them.

We seen the neurologist a few weeks later, same clinic as the NICU one, and she told me word for word what they said and agreed he has spastic diplegia cerebral palsy. He continued with CCAC Toronto and continued with intense therapy, his therapist did it at the grandparents place and we did therapy 20mins 3-5 times a day. In December that same year, 3 months after his diagnosis, Nicky had a seizure and I rushed him to hospital..the same one where his clinic was located and he was delivered. This is when I made the biggest mistake of my life, when the doctor asked WHY he had CP I told him flat out that I thought it was from the screw ups the nurse and OB made. He noted this on the file and after a CT scan I left with a discharge sheet that said "mom thinks hospital caused CP....CT scan normal". After reading that my heart sank, I accused the nurse and doctor of harming my child and from what the ER doctor was saying I did so in error. He set us up with an EEG a few days later up stairs to see if they could see any seizure activity, if they did they would start medication, if not they would wait but if he had one more within a year they would treat for a seizure disorder because it's common in CP kids.

After a lengthy and wonder appointment with the EEG tech, who came in from Sick Kids, even she raised concerns and said as far as she is concerned after hearing how horrible they were at his delivery that she too believed they caused it and told me to think hard about launching a lawsuit because his care would be very expensive and if they caused it they should have to take some responsibility for his care too. I kept this in the back of my mind but really it was my word against theirs, after all the CT was "normal" so how could I prove they caused it? ALl my research showed the CP caused by O2 deprivation leaves visible abnormalities on brain scans.

The follow year was good, he progressed even more, he was finally rolling over a bit and was trying to stand. A few months into the new year though he started having head pain, one day he just started screaming and would not stop, he was grabbing his head with this look of fear and pain in his eyes. I thought he was dying! I rushed him to Sick Kids, after all if he was in serious trouble that was where he needed to be, it was a million times better for emergencies than his hospital. This was the break I needed, but I was not prepared for it, he was in so much pain their best guesses was he developed hydrocephalus or more unlikely but still the second best guess a tumor. Thankfully it was neither, it was a migraine, but nothing could prepare me for what they were going to say. "His scan shows typical CP damage" I looked at him like he had two heads "excuse me? that's not possible, he had a scan in December and it was normal", they called his hospital to demand the report, something wasn't adding up, it was even worse when they claimed they must have "lost" the scan and report. Soon a neurologist came in to see us and told me the devastating news "Your son has severe periventricular leukomalacia, or PVL, there is no signs of any bleeds, new or old, and is typical of children who suffered from the serious and prolonged distress you described that happened at birth. I will be honest, as far as I am concerned with the facts you presented, and the his hospital doing the impossible and losing the records of his scan, it was caused by severe birth trauma. If I were you, I would get a lawyer."

It was even worse was when he told me how bad the damage was "I have never seen PVL this bad in a child who has survived the NICU, you have to be prepared for what is going to come. I'm sorry but he with this amount of damage the outlook isn't that great, severe quad spastic cerebral palsy is the most likely outcome. It is unlikely he will talk, crawl, walk, he has a high chance of being deaf and having vision problems, and less than 1% have normal intelligence. I'm sorry." Little did he know that Nicky was already doing some of this, he thought the whole time he was talking about Matthew who was sleeping in his stroller and not the child who was commando crawling, pulling himself to a stand, and talking up a storm. When he found out he was talking about Nicky he left the room to make sure he has the right scan and the right child. When he finally came back in he told me that we were lucky, very lucky, and as far as he was concerned the only reason he was doing so well was because of the hospital trying to deny anything was wrong and cover up their mistakes. After all if he was diagnosed with the severe PVL he had at birth he would not be receiving intense treatment, he would be receiving palliative therapy as there was little to no hope of improving.

Of course we continued with therapy, no one was going to give up, not when he was still progressing. His therapist made a point of always reporting that he was still improving and had not plateaued. As long as he didn't plateau his level of therapy would not drop off under her care. CCAC though only does home care until 2yrs old and he was quickly approaching that milestone, and of course nearing it something funny happened, Mississauga FINALLY called about giving him therapy, only because his second birthday was around the corner it was POINTLESS for them to start therapy and he would just be referred to another program that deals with kids 2yrs on. His therapist though had moved to refer us to Silver Creek, a therapeutic school for special needs children, and we were waiting for the acceptance letter. That program didn't start until September though, 4 months after his second birthday, so Toronto agreed to keep up with his therapy as long as they could so he would have no long breaks in it. It was at this point they also decided to actually harass Mississauga and try to get them to take on his after 2 care until we found out if he was going to Silver Creek.

We got an appointment at the facility in Mississauga at the end of June and were told he would start therapy in July. Toronto discharged. After a full assessment and reviewing his records, now with the "cerebral palsy secondary to severe PVL" diagnosis, they decided that because of his dx, even though he hadn't plateaued and was doing better than expected, that they would only be able to offer him a one day a week 6wks on 6 wks off rotating SLT, OT, and PT...that meant SLT wk 1 & 2, OT wk 3 & 4, and PT wk 5 & 6, and nothing for 6wks before the cycle started again. We knew already he need to maintain an INTENSE schedule to continue to progress but they refused to give it, his dx dictated his outcome which meant intense was futile! We were told to take it or leave it, a few days later he was accepted for sure to Silver Creek so I told them we would take it, we just went telling them we were only taking it for the summer. Sadly though even though we were were told it would start ASAP we were informed that NOPE they are on holiday for the summer and he would get nothing until the end of July to beginning of August....which was a lie, he received nothing except for the daily therapy we gave him until he went to Silver Creek.

Silver Creek was the blessing we were looking for, but it stretched us to our limits and we needed subsidy, to be bused on top of it he had to be dropped off at his grandparents because we lived in the wrong city. After fighting with subsidy they finally had to ask Toronto if they could cover it for him as the centre falls under them and would be stealing a space from a Toronto child. We needed to jump through hoops, lots of them, to only get a very small portion to be covered...but any little bit helps right? For 2yrs we paid out of pocket to ensure he received the intense, and daily, therapy he needed.

If left to Mississauga he would have received NO therapy until after his second birthday and only the smallest amount that they could spare. Because of lies from his hospital we were able to get the therapy amount a "normal" child with delays would have got. If he would have been dxed properly at the start Toronto would have offered the same thing the after 2 care in Mississauga offered us. We were lucky, very lucky, time and time again, because of mistakes and lies we were able to secure the BEST for our son for the first two years. For the next two years, because we wouldn't settle for less, he still received the BEST care even if we did have to pay for it. He has now graduated from Silver Creek and moved onto another wonderful program, he's at Bloorview's school again receiving only the BEST care possible.

If left to the medical system, and up to a diagnosis written on a piece of paper my son would NOT be where he is today. This is a known fact. With the amount of brain damage and other problems he has intense therapy and proper care would have been seen as futile, he should not be where he is at right now, by statistics he should be a completely different child. Yes he still has a host of medical problems but without the therapy he received they would have been a lot worse. His core muscles were strengthened which has helped enormously with his breathing and feeding issues since most of the problems stem from weakened muscles. The therapy reduced spasticity which broke the usual daily spasms that left him screaming in pain. Intense and proper therapy, in my humble opinion, made him the person he is today and allowed him a chance at a "normal" life. I would not even want to glimpse at his future had he not received this therapy and this chance, and I am glad he was born to us, parents who would not settle for what a piece of paper says he deserves but settled for what a normal child or adult would have been given.

My Nick walks, and rides, and climbs

Not only does he talk but he SINGS (Batman to Divine Brown!)

And after defeating his fear of water...he SWIMS!

He is worthy, he is worthy of every second of therapy he can get, worthy of every last penny the world has, and worth every breath that he takes....and is as worthy as any "normal" person at a chance to live a long and fulfilling life.

He does not know that he "can't" do things, we will never tell him that something is impossible, as long as he believes he can, HE WILL, and he and every child like him deserves all the support they can receive to ensure they have a chance to TRY.

(Nicholas has: Spastic Diplegia Cerebral Palsy with weakened trunk muscles, severe PVL, a large pineal cyst, mild tachycardia, obstructive sleep apnea, extra pouch of skin in his throat, reoccurring aspiration pneumonia, Chronic inflammation of the lungs w/ chronic infiltrates (lung disease), chronic pneumonia, asthma, GERD, Vit K malabsorbtion due to bowel issues, thalassemia trait, chronic migraine, muscle spasms among other minor issues. Besides being in a wheelchair most of the time he looks and acts like any other NORMAL child, unless he's ill, and most people would never guess that he has medical issues)

Saturday, April 24, 2010

Nicky's wheelchair =)

While here is a few pics of the wheelchair Nicky is getting LOL no it's not going to be pink, though I teased him and said it was going to be and we were going to put barbie pics all over it, but he picked out Opal Blue....same color as our car actually!

He did an awesome job, they put him in the trial wheelchair and took the sides off and asked him to move it if he could, he TOOK OFF! He has NEVER EVER used a wheelchair before and you would never know, he went forwards, backwards, around objects, and even tried to play bumper cars with Matthew who was playing on one of the ride on cars. =) It was AMAZING! He was so thrilled and loved having the freedom to get around on his own, sadly though we had to tell him he couldn't take it home with him and he wasn't too impressed with us about that. Hopefully his will be in soon though because he has all these plans for it, he told me when we get it he wants to go for a walk, go to the mall, go on the bus, go to the playground, and play with his friends!

This is going to be a wonderful summer, he will finally have some more freedom and will be able to get around all by himself LOL he's even told me that *MAYBE* he will let mommy and daddy push him...but just maybe because he wants to do it all himself.

Sunday, March 07, 2010

Equipment Help ~Pretty Please~

LOL No really I am not trying to make up for almost 7months of neglect in one night, just not going to annoy you all with mounds of photos via e-mail. Nicky is getting fitted for his AFOs this week and while they are at it his OT and PT are ordering the equipment we'll need when he starts JK in September (lets hope they don't take as long to come in as the Kid Kart or we still wont see them until the end of this year/beginning of next year).

Anyway, I'm looking for input from my fellow CP mommy's as to which is the best wheelchair and walker, from everyone else feel free to say which ones you like best too. If you have better suggestions, please tell me what equipment you use, we though we did an awesome job when we picked out the Kid Kart but it turned into nothing but a big head ache. Keep in mind that the wheelchair have to have the transit option as he will be bused to school next year and can not be bused without the transit option. He also wants to be able to move it himself, he doesn't have the strength yet to use a walker full time. (sorry I lost my bookmarks lol I did have a few more wheelchairs in mind but I'm sure my CP mommy's wont let us down and will make sure we know which the better ones are!)


Super Kid


Kaye Walker



Last few months in one post.

LOL I will try to make it as short as possible without missing anything.

End Aug - Beginning Sept. = Matthew's blueness was again caused by pneumonia, he will looking fine when we brought him in (no fever etc.) but they did an x-ray to check for enlargement of the heart and found pneumonia. Got Nick and Joe ready for school to start and all of that fanciness, Joey's school is on a planet of their own (get into that later). Joey's school intends to push for the specialized school stating they can not handle his case, IPRC set for Nov.

End Sept - End Oct. = Nicky starts with nightly breathing issues, starts off as just a PITA, increased all meds to try to correct and started oral steroids to combat inflammation. Seen by the Complex Respiratory Care Clinic and Chest Clinic (same dang thing only Complex most of the kids have machines) given temp diagnosis of sleeping disorder caused by obstruction and ataxia and his chest x-ray clearly showed lower airway inflammatory lung disease.

Nov-Dec = Nov. 3rd, Nicky is playing with friends and turns blue from head to toe. Since he has just finished eating we assume he has refluxed and aspirated and needs to be checked out. We arrive at Sick Kids and they rule out pneumonia based on the fact his x-ray looked better compared to previous one in which he had pneumonia (we argued this because he had a CLEAN ONE a week and a half before) they did an ECG to rule out and issue with his heart and after 3hrs got the doctor to actually look at it. We seen it and we could clearly see problems with it but we were told it was "perfectly normal", the following day we phoned the Complex Respiratory Care Clinic and they reviewed the info they had and made a diagnosis of "possible H1N1" and started antivirals (Within days we are all assumed to have it). Two weeks later the head of emerg phones, I think to myself "wow never had a follow up call before" and was happy for a moment that someone cared a little more then usual.

I was in my own world thinking that because after him asking how he was doing and if he's had any more symptoms he brings our world down upon us yet again. "Nicky's heart is too fast, he needs to be seen by a Cardiologist asap" thank goodness I had the car pulled over or I might have hit something! He was referred off to Cardiology at Sick Kids (to Dr. Dipchand, head of the transplant team, THAT caused a heart attack for us) since that is where most of his doctor are but his ASAP appointment ended up being Dec 15 & 16th, he was suppose to get an ECG, holter, and that little hand held heart recorder (it has a technical term LOL just can't remember it at the moment).

Dec 15th ECG=Tachycardia (still, but it looks worse) instead of meeting with the doctor on the 16th like planned (after the holter was returned) they decided to wait until the holter readings were back and we had transmitted a few reading from the hand held device before she seen him. His appointment was rescheduled for Jan 15th, if enough data was collected. Holters are a fun experience LOL Matthew pulled the wires twice and Nicky pulled them once, he also spilled juice down himself and one of the things was "no getting wet"....very very fun night!

Joey's school informs me IPRC went "excellent" and they are modifying his program until he switched schools. (I could not be there since we still weren't clear of H1N1)

Jan. - Feb= We meet with Cardiology and get some pretty good news, though Nicky is suffering from Tachycardia his heart rate remains in the high normal - low, low/mod high rate. The rhythm, the most important part, even though it is faster then normal remains NORMAL, he does not require medication or a pacemaker, he will be discharged from Cardiology and will be followed closely by his team instead. She will see him back if it gets higher or he starts having a lot of full body blue spells, by her the blue spells he was having were caused by breathing issues not heart ones (mucus plug, something blocking the airway temporarily etc.).

Nicky is seen by his family doctor on Jan 28th, takes just a few seconds before he says "When are we fixing his eyes again?", they are that bad and his vision seems to be taking a beating this time. It is being recommended that he has surgery and uses glasses at least 2hrs a day to help keep the muscles from becoming weak. He goes back to the Eye Clinic on the 12th and surgery is suppose to be booked that day, we will let you know exactly when asap.

Nicky was assessed by Bloorview, first step in the long process to get him into their school program for next year, he did an awesome job and aced his first interview!!!!!

Joey's school admits to lying, we get the letter from IPRC and find out that they told them he is "just a little behind" and doesn't need a special school (mind you the report from his last school, dated in June '09, said that he is at a gr 1-3 level, no where near gr 6, don't see how he can go from severely behind to slightly behind in just a few months!) We are told we can not appeal this until APRIL, we also find out that Joey has been unable to take gym (as punishment) since school started and has received detention EVERY DAY since the beginning of school for something that doesn't even involve him (it involves ME and the school, not him). They caused two life threatening low blood sugars and needed to phone the ambulance twice, but still would not take responsibility for their own actions. (If you haven't guessed it he's switching school LOL getting sick of school playing pass the buck and neglecting to do their job!).

March- Of course we have eye clinic (for eye surgery) and upcoming surgical consults, they will soon be widening his airway, they intend to get rid of the pouch in this throat, tonsils, adenoids, and tissue from the back of his throat to make breathing easier. They are we are hopeful that this will also have some effect on the reflux and aspiration but we wont know for sure until after surgery (hopefully this summer before school since he will be down and out for up to a few weeks).

=P and yes I will start updating this more often, you people all complain to much about the e-mails and it's too much work to make sure I got you all LOL

Edit: LOL guess I forgot to add the most important stuff eh? Mike's CT finally went through as of Oct 26th 2009 he is now officially Air Force and an Officer =P mind you he still had people e-mailing him calling him MCpl until the middle of December lol We also moved to the other side into a 4bdrm Q (full house) it is huge and we have a huge yard now (front and back) that we don't have to share. Mike is doing his home study soon and is being posted for OJT (without us) and is off in Jan '10 for him big course. We wont be posted together again until after his course is done in Aug '10, so we are looking at a whole year without him =( We aren't telling the boys until it gets closer but hopefully his OJT is in Trenton or Borden so he can at least visit often. We have no clue how much time he will have off once he goes for the actual course but it's only a few hours away from home so either we can visit some weekends or he'll come home for a few. Our first choice for posting is still Comox, cross your finger and hope we get it, it would be a wonderful posting for all of us!

New Pics

Here ya go Dave, I know it was you who wrote that, the boob comment gives it away LOL Stop stalking my blog =P

Joey and his doodles.

Nicky's first swim since surgery, he loved it, too bad he'll miss out on a lot of the swimming this summer, his next surgery should be booked when we go in on the 12th and will most likely land in June so no swimming until Sept/Oct. More on that when I get around to the big update but I'm pretty sure you seen the e-mails anyway...if not you'll be updated soon.

Little Matthew isn't so little any more. LOL Not that he was really little to begin with eh? =)

Tuckered out, this was our first night at the camp ground, they stole my side of the bed!

Hi Everyone =)

Yes yes I know it's been a long long time, at least I remembered to e-mail most of you to keep you all up-to-date. For those who I neglected, sorry, I will get back to using here ASAP.....while I should say as soon as we know more about what is going on with Nicky, it has been a horrible and long few months, please be patient while I try to move our journal over to here. Please ignore the post above, it is meaningless to you all, unless of course you all find it as amusing as I do that I'm "fake" LOL and no comments from the peanut gallery please =P Sorry that all your comments have been removed, and please refrain from commenting on here for a bit, all you need is to be trolled too eh?

Friday, August 14, 2009

The roller coaster

It has been up and down here lately. Joey was taken by ambulance to the hospital the other night, it was scary! I stayed up late, too late, but I'm glad I did or I would have never heard him since our rooms aren't attached. At about 3am I could hear banging coming from his room and heard him make a little noise, it was only one noise but the banging continued so I rushed upstairs thinking he woke up and was playing. I got up there and noticed his light was still off so I KNEW something wasn't right, I turned the light on and walked in and he was seizing, he was laying against the wall and he was hitting his head off of it! I ran over to him and he was foaming (for lack of better word) at the month, his pupils were massive (not responding to light), and was completely unresponsive. I ran down and got his monitor so I could check his blood sugar (thinking it was too high) by the time I got back up he was no longer seizing. I checked his sugars and it said 1.3, so I did it again thinking it was wrong and it came out as 1.6, I woke Mike up and phoned 911, we couldn't get anything into him to treat him. By the time the ambulance got here he was very violent and agitated, it took FOUR OF US to hold him down so they could get a sugar reading (they had to do it twice) and again so they could give him a shot of glucagon.

They got him packed up to go to the hospital and I rode with him while Mike stayed home with Nicky and Matthew, he fought the whole way there freaking out. At a few points he fought so hard he had the straps around his neck!!! When we got to the hospital they were just about to put him into a curtain when he started scream and freaking out even worse "I CAN'T SEE, I CAN'T SEE. WHAT'S WRONG WITH ME I CAN'T SEE" the doctor (who was standing beside us) yelled for them to phone CT and get him in NOW. He wanted to sedate him right then and there but the nurses argued that they could start the IV without it (the IV sedation was less potent and had less side effects then the needle he was trying to give) it took two tries but they got it, but it was taking too long and he was freaking out horribly so the doctor ran over and gave him the shot.

We immediately ran too CT, the doctor yelled at them the whole way there, they had a sedated child and the nurses did NOT hook him to the monitor or have O2 ready for him. It was under the bed and the nurse wasn't even sure if it was full. The doctor LOST IT on them! We got to CT and the tech was MIA, he was pissed, they just phoned and he said he was there . They finally got it done and the doctor told me it looked fine but he would check it out more indepth on his computer. It ended up being fine, the temporary vision loss and severe head ache he had was from the seizure he figured....and banging his head off the wall. He went until noon before he had a normal reading and we were discharged at that point.

I hope to God we NEVER have to go through that again!

Now on to the next, Matthew has been getting blue lips and tongue, and not like the old spells that were "fine", he'll be playing or overactive and his lips will go blue, took a bit before we noticed his tongue was too (which is new, only happened once before but they figured it was because he was later dxed with pneumonia). We now have to wait for the doctor's office to get back to us with an appointment...hopefully they will get him in fast and hopefully we will be told he is fine! He is our only "healthy" child, it would be devistaing to find out there is something wrong with him too (beside the minor things that aren't harmful).

Nicholas is doing great though, he is having so much fun in our new huge yard, he also has a new little friend that lives right next door and he is very very excited about going back to school shortly. =)

Please keep the boys in your thoughts and prayers, thank you!

Friday, July 24, 2009

long winded update

It's been busy here lately, very busy, Nicholas had his eye surgery and everything went smoothly =) and by his surgeon he is the only child she's ever had that didn't end up with some kind of infection post-op. His eyes look great! She was telling us he would most likely need a second surgery because his eyes were starting to pull upwards and this surgery would not fix it, but guess what? His eyes since surgery have not pulled upwards at all so by the looks of things he will NOT need a second surgery *yippee*

Now for the downside (why does there always seem to be one?) Nicky had his feeding study, he didn't aspirate during it BUT came close and is pooling a lot of fluid in the back of his throat, even though he didn't aspirate during it she figures that when he's ill he does since he has extra problems with being "noisy" when he's sick. Now if that wasn't enough his test results are all in, he is slightly Vit K deficient (Vit K is needed for some clotting factors) which does explain the bruising he was getting. He also has that thalassemia trait, which confirms the diagnosis of thalassemia in myself in a round about way, my neurologist brought up the possibility when I was pregnant with Matthew because of my constant low hemoglobin for no known reason (doctors never checked for thalassemia because it doesn't fit with my ethnic background). Nicholas has the "cis" type, meaning he got both genes on one chromosome, since DH has no thalassemia genes it means they had to of come from me and because my hemoglobin is very low they put two and two together without having to stick me any more times to come up with me having it (I have three defective genes, one from one parent and two from the other). On top of that, yes there is more, he is also showing a higher then normal but not screaming "somethings wrong" level of fetal hemoglobin, more then likely HPFH but we wont know for sure until more tests are done later. His doctor just wants to watch it for now, he says it's higher then expected and higher then he's seen before but not high enough to warrant more tests just yet.

We have also moved, we are in the PMQ's now, it is so nice to actually have room! We got a 3bdrm townhouse and it is CHEAP, we are paying less here then we were for a small 2bdrm apartment! The kids have loads of room to run and pay and there is a playground within spitting distance of our unit. Mike's CT is going through so they ended up scrapping tour on him, they gave him a choice "go on tour or take the transfer" while tour pay is awesome but in the long run the CT is going to give us more money. Mike also finally gets his wish and he will soon be Air Force =) I am so happy and proud of him!

Both the other boys are doing great, Joey did have an issue with his A1C thanks to his old school but it is coming down nicely (2.4% drop in a month!), he also finally has his IPRC and IEP and is identified at the board level which means no more yearly testing that goes no where. He will be starting a special program next year and it doesn't matter where we go every school has to honor this because of him being identified at the top level. Hopefully this will mean we see huge improvements at school not only in his work but overall, especially in his stress level, we are hoping he will start to really enjoy going to school again and not be so frustrated with it all.

=) while I will update again when I have time. Nicky has a few more appointments to go, he has the sleep study and he's been referred to the breathing clinic so hopefully his treatment will all start to come together now and he'll be a lot healthier from it.

Thursday, March 12, 2009

Good Thursday Morning lol

Not too sure how "good" it is but it could be worse right? lol

Matthew has been ill since Feb. 9th after three weeks of pneumonia (which I'm sure is still there) he has now come down with a brutal intestinal bug that is going around resulting in fevers over 105f =( Nicky just started to come down with the fever last night and Mike is starting to feel ill too (I have been for just over a week now). So far Joey doesn't have it *knock on wood* but it's looking like a not so great start to March break!! My surgery went well, the recovery not so well, long story but I guess we'll just have to wait and see how things go over the next few months lol

Nicky is going to start having his legs taped in an effort to lengthen his muscles, he had the test patch put on his back on Tuesday and it was not suppose to come off until tomorrow BUT Joey seen it and PULLED IT OFF and asks me what it was lol I'll have to talk to the therapist while she's in tomorrow and I'm betting they are going to have to start the test patch all over again! He is also finally being booked for his eye surgery, goes to the ENT the beginning of June (to get the sleep study booked), and will be heading to the feeding clinic shortly too to be assessed by them and be booked for his feeding study. I am so glad that the ball is starting to roll on all of that it's been a long time in waiting! He was also sent in for blood work to rule out a bleeding disorder and has been take off two of his meds (Naproxin and Advil, for pain, spasms, and migraines) because he was getting horrible unexplainable bruises (mainly on his forehead, he was black and blue from one side to the other....he tends to sleep on his forehead with his butt in the air so it was from the pressure on his head). The doctor, like us, feel it's because he's on so many meds that have side effects of easy bruising/bleeding so we agreed he should not be on any of the ones that aren't being used for something serious (ie none of his meds for his lungs we can give up). So far so good, I had taken him off the Naproxin and Advil on the Thursday before we went in as a precaution and since he's been off them for two weeks now he's had few new bruises and none as bad as the earlier ones. We are still waiting for the labs to come back though but so far it does look like we were right and it's just from the meds. He is being sent to a Neurologist to find better ways to take care of the pain and spasms and hopefully they'll be fast getting him in and see him before the spasms start to get bad again!

Mike's been given "maybe" dates for is work-up training lol now they are telling him he should be leaving the endish of April BUT we all know how they like to change their minds so I'm not holding my breath over it! Since we still don't have solid dates, and we are so use to him being pulled off tour, we haven't sat the kids down for the nice long "talk" yet. Hopefully soon they will give him solid dates so we can start preparing the boys for him to leave, that should be "fun", but I'm sure we can find lots of fun ways to keep them busy so time flies for them!


Saturday, February 14, 2009


haha so I'm booked for surgery on March 4th (oh yippee!) not only did I severe the nerve BUT I nicked the tendon but because the doctor at emerg didn't even think of this possibility it was not splinted and I was not told to keep it still. So with my moving it the surgeon said I made the little "nick" into either a complete severe or close enough to it, because of my need to constantly be lifting Nicky he gave me two choices #1 Leave it alone, deal with the loss of feeling and limited mobility/loss of function or #2 have surgery to fix it, be in a brace for 6-8wks and deal with physio until the strength is built back up and not be able to use my hand (lift Nicky or Matthew with that hand) for MONTHS! So I picked surgery, at the very worst if the healing or surgery doesn't go as planned, because surgery is not 100% guarantied to work, I will have the same result as doing nothing so might as while give surgery a shot at least right? My IL's are taking time off work to help me out with the boys during and after surgery since Mike is going to be away on a major EX up north....way way up north lol talk about great timing eh? but with their help I will have the first few weeks of healing covered and hopeful obtain the BEST results from surgery.

Matthew is terribly ill right now, which makes everything so much worse, we have no clue what is wrong with him. He started off Monday with a fever, Tuesday with fever, vomiting/diarrhea, and a nasty rash and very itchy around the mouth, Wednesday Mike booked an appointment with the nurse at the doctors office and we took him in, of course I get there and he has no fever so she though he was turning the corner, she did send away a swab for Strep since she couldn't get a good look at his throat but nothing looked out of the ordinary. Thursday it all went down hill fast, he woke up with a temp ranging between 102.5-103.5 and by the afternoon it was 104 and nothing was bringing it down and he was not wanting to eat or drink and looked really really bad. We ended up taking him to the ER to get checked out and they did not like it either, the did a cath to get urine and blood work, his urine came up with glucose and blood so it scared the crap out of us since Joey is diabetic. Thankfully his blood came back with normal glucose levels BUT it also came back completely normal for everything else too, so they sent it and the urine off to be cultured. They ended up sending us home since we got the fever to break and finally got a wet diaper out of him but were told to go back Saturday if he still had a fever and the results from the cultures would be back so they would know if anything was up there. While Friday morning he seemed to be perking up, he was finally moving about and ate a cookie, not the healthiest thing in the world but at least it was something, his fever was also controllable and lower. While fast forward to 9:30pm, fever is climbing and not dropping with tylenol or advil, and he looks like crap again and is hardly we are definitely heading back to the ER in the morning! I have dealt with a ton of sickness before, horrible infections with Nicky, and believe me he looks worse then Nicky ever has, I have NEVER had an illness scare me so much he looks REALLY REALLY BAD! Please say a little pray for him and hope they figure out what it is and that he gets better very fast, he has never been this sick before and it's just breaking our hearts to see him like this. Please also pray that he doesn't end up with whooping cough, he has ended up with the flu really bad all four times he was suppose to get the last shot for it so he's not fully vaccinated and while we were at the ER a lady had all three of her kids in to be checked out, her youngest kept coming over and getting in Matthews face and when the doctor finally came out to see her again she confirmed that they all had whooping cough!!!! They said it would be a "slim chance" he would get it but because he's already sick that slim chance is a bit higher. Whooping cough is the last thing we need in this house!!! Because her kids had their shots up to date (or so she says) the resident didn't put them in the lock down room thinking they most likely had pneumonia so about 15 families were exposed to it while waiting to be seen or discharged. NOT FUN!

On the upside Nicky is doing great, he has never been better, he has learned to climb onto things so he's been perfecting climbing on anything he thinks can be climbed onto lol His school is very happy with him and he has not been sick for the longest stretch lets hope he doesn't get whatever Matthew has!

While I will let you know how our trip to the ER turns out tomorrow when we get back, that is if they don't admit him, Mike has all next week off lol his B-Day gift to himself so at least someone will be here to get the other two ready for school and watch them until Matthew is feeling better.