Thursday, September 20, 2012

Surgery Day

I am so glad that yesterday is over!!!!!  This post is more for my record, sorry if it is boring.

At 8:30  we arrived at the hospital.  Matt was in an okay mood, but he was already asking to eat.  He wanted a cookie and a drink. Of course I wasn't able to give him anything.

At 9:15 Matt got changed into his gown and on the of members of the pastoral staff from our church came up to the hospital to be with us during the surgery.  Our church is pretty big and I had never met him before but I was very glad he was there.
At 10:00 we went up to the second floor for surgery prep, meeting with the surgeon, anesthesiologist, and their residents.  Due to Matt's muscle weakness and history of sleep apnea they took a lot of precautions with putting him under. 

At 11:30 he was taken back to the OR,  They had given him the medication to calm down and as they wheeled him back to the room he was happy and chatting with the nurses.  They waited until after the nitrous oxide to give him his IV.  They wanted for him to be almost out to give him the IV but he couldn't be asleep as part of the precautions.  He also have to have a breathing tube until after he was awake.

11:30-1:40 - We waited.  Kevin wasn't able to make it to the hospital before the surgery, but got there shortly after Matt was taken back and was there until a little after he woke up.

1:40-2:15 - Matt was in recovery waking up.  This time seemed so much longer than the surgery.   Charles had left so I got up and talked to some of the other people waiting.  I met a nice woman who's son was on his 7th surgery.  He has to have surgery on his back every 6 months.  She travels from Laredo and she was there alone.  I am glad I talked to her, the doctors had talked about her son getting a feeding tube very many times and she was really reluctant.  He will drink some pediasure by mouth but he won't ever finish it.  I told her when we started discussing it that I did a lot of research and so many parents said their only regret was not doing it sooner.  I told her I was excited that I wouldn't have to worry so much about what he eats and drinks, I spend so much time worrying about it and I was sure she did too and this will be a major relief.  She doesn't have a computer but I did tell her if she gets to a computer to look up a few websites.

2:15 -FINALLY I got to see Matthew!  When we got there Matt was barely awake.  He was very groggy. They had just taken the breathing tube out but his oxygen would be low at times.  They were about to have to put him on oxygen when he woke up enough to start screaming!!!!  Then we went on with an awful hour!  He cried and cried and cried!  They gave him four doses of morphine and a different pain med.  Finally by the grace of God he calmed down enough to go to his room.

This was when we first got to see him.

This was in the room. 

Last night was a rough night.  Matt over all was doing well but he was really tired.  Since he doesn't have the ability to put himself to sleep this made surgery so much worse.  He was very irritable and he wants to eat.  When I got to the room I got a surprise dumped on me.  Since the tummy has to rest with the tube being so new he would not be able to take any meds that go through the digestive system.  He can only have IV meds.  When I heard this I was so frustrated.  I kept checking to see the status of finding a replacement IV med for clonidine and melatonin.  There isn't any. 

I kept having to tell the nurses he can't go to sleep on his own.  At first I don't think they believed me.  We had to call the surgeon on duty over and a plan of action was put into place.  (This was about 8:30, thirty minutes after his bedtime, and with the busy day he was already exhausted!)  We would try IV fenigrin (Spelling?) and if that didn't work we would try using his tube.  Clamping it for 30 minutes after.  They were really worried about using the tube and made sure  knew the risk.  He could vomit or retch and that could take out the stitches.  I  told them I was willing to try the finagrin and the other meds first but he really needed to sleep.   I wasn't trying to be difficult but it felt like they just didn't care, or even care to try to understand.  

By this time I had called my dad to come up to the hospital so I could go get something to eat.  I had had snacks but no real food and I needed to be away from the situation.  Yesterday there were lots of tears.  (mainly mine) 

After doing all the meds it was 10:30 and the nurse could not believe that nothing even phased him.  I tried turning the lights down the whole time, taking away games, which I don't have to do normally.  Nothing worked.  We put the meds in the tube, closed it up.  I put the movie on, gave him his game and right at 11 he fell asleep!  He didn't have any complications PRAISE GOD!!!!  

I stayed awake for about an hour finally got to drink some water and watch a little TV.  I have been so thirsty and hungry I can't eat or drink in front of Matthew.  I crawled into be with Matthew.  Every night when I am sleeping he crawls into our bed and I didn't want him crawling out of his bed with all the tubes attached.  I slept pretty well.  I would see the nurses come in to do vitals wake up for a second and go back to bed.  

At 6:45 the surgeon team came in and woke me up. Before Matt woke up I was able to drink some water.   At 9:30 another team came in.  They said they would let him start with drinking but we are still waiting.  We clamped his tube  this morning, we have released air once but there wasn't any gas in his tummy.  We drained the tube and there wasn't much liquids.  I am so ready to start feeds tonight so he won't be so hungry.  

He did get up and walk around this morning.  He was running.   I am incredibly surprised how well he is doing.  Praise God!   His leg did start bleeding though so we have to take it easier.  We are back in the room for now, and getting him to settle is difficult.  At 2 we get to go for an activity.  We even get to leave the floor!    

Tuesday, September 18, 2012

Surgery Tomorrow!

On Friday we saw the surgeon for a follow up.  It seemed kind of pointless and the only new information I learned was we would be at the hospital 5-7 days instead of 3-5 and the first 24 hours he will be in intermediate care to check his vitals and everything after surgery.  Friday afternoon I spoke to the scheduler and she said it could be scheduled for Oct 14th.  I was devastated.  I could barely finish the conversation with her.  I asked her if there was anything sooner.  She said she would talk to the surgeon and get back with me.
It might be silly but I was devastated because Matt has been looking forward to Halloween since the beginning of summer.  After a nissan from what I have read you can't eat anything but purees for 2 weeks and sometimes there is swelling and can take longer to be able to eat.  If the surgery was the 14th it would put it very close to Halloween and I didn't know if Matt would be able to eat any candy.  He doesn't eat a lot and when he has eaten much candy it causes him to throw up, but still no candy on Halloween would be devastating.  The latest I wanted to chance it was the first week of October .
After getting off the phone with her I tried to make my peace, I could have scheduled for November but he really needs this surgery.  He is having issues not being hydrated, being cranky, aggression, and now the tic.  I don't know how much of it is caused by his body not getting enough hydration and nutrition but I know it really affects things.  I called on Monday and left a message saying I was ready to go ahead and schedule for the 14th or later now since I waited to schedule.  I didn't get a call back, but I have been praying and leaving this in God's hands, because after all he is in charge and always knows the best plans.
This morning shortly after waking up, I was wondering if I should call the scheduler but put it out of my mind.  A few minutes later the phone rang and it was her.  She told me she hadn't forgotten about me and the surgeon was in the office this morning he spoke to her, some things came up and Matt can be scheduled for TOMORROW.  I told her yes, and thank you, while I was still in shock.  I am going to call her back in a little bit and thank her again because I am really not sure what I said to her other than yes.
So tomorrow is the surgery day.  We go in at 8:30 and schedule for 10:30.  I felt silly preparing so early list of what to take, the socks, the felt boards, etc, but with this turn of events I am really glad I did.  Today I have to do laundry, pack, 4 therapy appts (I could cancel but I have to let them know anyway so I might as well continue) shop, and prepare Matthew.  Since I already have list made it will be much easier to just check off the list.  :-)

Please keep us in your prayers as we prepare and for the surgery and recovery.  I will update as I can.

Tuesday, September 11, 2012

New Issues...

Matt has added a tic or a movement disorder.  Either one scares me and frustrates me.  Last Thursday in when I noticed it.  All three of his therapist commented on it.  I didn't think much of it until after therapy we went upstairs to play with a toy he has been wanting to play with for days.  He couldn't stop moving and there were jerky movements.  I called the doctor and we went in right away so he could see it to make sure it wasn't an emergency situation.

He wasn't sure what to think of it.  He did some research and it could be caused from one of his meds or he could just have added a tick.  I am trying to get a hold of the doctors that can help with the medicine issue but having to wait to get a hold of them.  I hate waiting.

I got a decent video today.  If you have any thoughts please share it.

Saturday, September 8, 2012

Fall weather is starting!

We were planning on staying home today but when I stepped outside and was greeted by the cooler temps I knew I couldn't waste the day. I packed up and told Matt I had a surprise for him. We went to Sea World! We stayed for 3 hours when it started to get too warm and then we headed for McDonalds.
What a great way to spend a Saturday!!!

Weight Check

Yesterday was Matt's weight check.  Matt has been eating a lot lately, but as you can tell by the list in the last post it is all junk food.  I have commented to my friends "are they going judge me for this kid gaining 5 pounds before getting a g-tube".  Checking into his weight check yesterday I told the nurse, the problem hasn't been eating, he is eating, it is junk food but he is eating massive amounts of it.  He just ins't drinking, I really think he is more aggressive lately because he is thirsty.  We did the weight check and he lost a little bit of weight and got a little taller.
They were concerned, they gave me a few suggestions but none that I haven't tried.  They said they would try to talk to the surgeon about bumping up the surgery.  Unless we are able to skip the follow up and go ahead and schedule the follow up is going to be Friday.

Today the weather has cooled a little.  I think I am going to enjoy the morning and take Matt to...

Friday, September 7, 2012

Feeding My Family.

In my house we have three adults and one child.  My father lives with us, he is disabled and it is much easier to have him here.  Plus I love my father and it is nice, my husband works all of the time, my dad doesn't mind killing the occasional scorpion or snake.  When my father lived alone I worried a lot about what he ate.  He lived off sandwiches, corn, and the occasional TV dinner.  When I was younger he was an excellent cook but after he had an accident and was in constant pain I guess he thought cooking was too much work.

I used to think I would never be a short order cook, that my child would eat what we ate.  Now days I cook dinner for the three adults and then make Matthew something on his approved list.  

Matthew eats:

Grilled cheese (occasionally) 
Peanut butter and jelly sandwiches (he will go through phases) 
broccoli (He used to love and could eat an entire bag, now he will ask for it, but not eat it often) 
fruit snacks

There used to be more fruits on this list but now most the fruits he likes he can't eat unless they are pureed and then he doesn't like him.  I still make him smoothies a few times a week, but I am lucky if he takes more than a few sips. 

The rule in the house stands I cook one meal a day.  (I cook all the meals for Matthew and me but not my father or husband)  Even when we have company (Our company usually comes from out of town and they have extended visits, weeks to months)  I let them know I cook one meal a day but I get a list of things they want for breakfast and lunch and have those stocked.  

I love to have family dinners at the table but with my husband being gone all the time my table turns into a medicine and sewing table.  When it is clean Matt and I eat dinner on it, but most nights Kevin's dinner is put in his dish and put in the fridge.  

I love for Matt to cook with me, he doesn't do it often, by the time I cook dinner he is usually tired and doesn't have the energy or attention to help me.  We do have a learning tower in our kitchen for when he wants to help me cook or just be in the kitchen with me.  

I love grocery shopping. I love to take my son with me.  I would love to shop everyday just for the day.   I even love taking my son to the store with me we like talking about the products or the displays.  I love now that we are in fall we get to see the halloween items.  He also likes to help me pick out items and with him at the store with me he gets to pick what he wants.  

Saturday, September 1, 2012

Letter to Caregivers

With the changes coming I finally put a letter to caregivers together.  It wasn't easy.  Tomorrow we are trying church again.  It has been difficult.  There is so much back on forth on if he needs a buddy and what class he belongs in.   The person in charge of the special needs department is always changing and it is just a mess.  I now have to call days in advance to let them know we are planning on coming to church which is frustrating  because so much of the time we plan to go Matt starts vomiting or has a fever and we have to cancel.
I called Friday and let them know we are planning on being there, hopefully we will make it.  Since Matt can't have thin liquids there was no time like the present to write the letter.

This is a general letter, the medication list is mainly for mom's day out, but thought any caregiver might want it.

This is Matthew. He is an amazing four year old boy. He loves cars, dinosaurs and super heroes.  He knows more about dinosaurs than I learned my first thirty years of life.  He will tell you all about then but you might not be able to understand it.

Matt has an unknown neuro-metabolic disorder.  This causes problems with different systems in his body.  Right now we are testing for mitochondrial disease and we are hoping for answers.  For now he is a wonderful mystery. 

Most days Matt struggles with articulation.  On good days about 50% of what he says can be understood, but he also has bad days where his intelligibility goes down to 20%.  Matt is eager to communicate and doesn’t always understand that other have a hard time understanding him.  He has a communication app on his iPad, on days you have a hard time understanding him hand him his iPad and ask him to use his communication device. 

Matt has a problem swallowing thin liquids safely.  Everything he drinks needs to have *simply thick added to it.  When he swallows liquids some of the liquid does down his trachea into his lungs this can cause him to get very sick.  He also can’t have foods that when you bite into produces juice, like oranges, ripe peaches, and watermelon.  When he eats these things they need to be pureed.  Other than liquids Matt has a normal diet.  He doesn’t usually take enough calories by mouth so he is supplemented with formula.  Matt will be getting a feeding tube in the next few months.

Matt falls a lot and gets pushed over easy.  His muscles don’t work the same way ours do.  Lately he has been having issues with his core muscles which makes it harder for him to keep his balance.  It doesn’t take much to knock him over.  He is very tough though so he recovers from falls very fast.  He also has problems with his legs and he has to wear braces on his feet to help him be stable. 

Texas heat is hard on everyone, but people with neurological disorders need to be even more careful when heat is involved.  When it is over 85 degrees and sunny, Matt shouldn’t play outside.  He loves to be outside but it takes a toll on his body.  In the cooler months it is fine for Matt to be outside and we spend lots of time outdoors to make up for these hot summer months.

Matt is not potty trained.  Last year he was fully potty trained but one day the skill was lost.   Occasionally he will ask to use the potty or go when you ask him to.   He does need help undressing and dressing.  He will not tell you when he is dirty and will run away when he is soiled.  If it is not your policy to change diapers call or text me and I will be there right away. 

Unlike other children Matt can’t put his body to sleep.  In order to sleep Matt needs medicine to tell his body it is time to rest.  With medication Matt sleeps 12 – 16 hours on typical days.  Some days he needs to sleep 20 hours.  Matt gets tired very easy, but tiredness on Matt looks different than typical children.  When Matt gets tired he goes into overdrive, stops listening and runs around not knowing what to do with himself.  Some days I put him to bed early, but most days this is just the way our evening goes. 

Part of Matt’s sleeping problems is he has seizure like activity.  You can’t see he is having abnormal braid activity on the outside, but it keeps him from getting to REM and wakes him up often.  Matt has also had other types of seizures in the past. Seizures in Matt have been partial seizures, looking like he was in a daze with ½ of his body not functioning.  Or they have been silent seizures where he will be doing something then all of the sudden stop after a given time he goes back to the activity like nothing happened.  The best way to tell if he had a seizure is he is very tired afterwards.  It has been a while since Matt has had a seizure, but it can still occur and can be different then the types in the past.  If he has a seizure please try to keep count of how long it last and call me immediately. 

Part of Matt’s metabolic symptoms includes ADHD-like behavior.  He does not have ADHD but at times it seems like he does.  He can also have problems with aggression.   He isn’t known to hurt other children and he is usually very good with people he doesn’t know very well.  If he starts getting upset try to breath slowly with him to get him to calm down.  If he doesn’t calm down please call me immediately and I will be there as soon as possible. 

Matthew has many sensory issues, he doesn’t like loud noises but he himself can be very loud.  At times he uses a pacifier but usually will not use it around other people.  If you are working with small objects please just keep an eye on him that he keeps them out of his mouth.  He has swallowed coins before. 

Matt has weak finger strength and has a hard time doing some activities that use fine motor skills.  He still loves to do crafts but he might need more help in some areas than other children his age.  His middle finger is his dominate finger and he has to be reminded often to use his index finger instead. 

Matt is a fun, happy and smart little boy.  It is easy to not even notice his challenges because it is so easy to get wrapped up in his charm.  He loves to be around kids and he is very outgoing.   

If you have any questions or any problems arise please call or text at 210-857-7464. Matthew also wears an emergency medical response bracelet around his wrist.  In an emergency EMS response team can get all of his medical information off his bracelet. 

Thank you,

Jennifer Guinn

* Directions for mixing Simply Thick are attached.  Matt needs nectar consistency. 

Attached is also a list of Matt’s medications. 

List of Medications

Matthew Guinn
DOB 01/10/2008

Polyethylene Glycol 3350
½ cap -1 cap daily

Nasonex 50MC/AC
One spay in each nostril 2x daily

Melatonin 5 mg

Cetirizine 1 MG/ML
5 ML nightly

Risperidone .5 mg
1 tablet at night, 1/5 tablet in the morning

Clonidine .1 mg
1 tablet at night

Nexium  20mg
Taken nightly

Ondansentron ODT 4 mg
½  tablet  taken as needed for v omitting

Matt’s  formula is Pediasure Peptide 1.0  he drinks 24 daily

Duocal 1 scoop in pediasure

Simpy Thick
1 packet .5 oz in every 4 oz of liquid. 
Matthew can not have thin liquids without simply thick.  This includes but is not limited to water, juice, milk, soup, ice cream, smoothies etc. 
Matthew also can not have complex fruits, which are fruits with solid and liqud unless they are pureed with nothing added.  This included peaches, oranges, plums, etc. 

I am also attaching simply thick directions.