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Wednesday, March 30, 2011

PICU- not sure what day it is anymore

It occurred to me this morning that today is day 12 not yesterday, since tomorrow it day 13 and its looks like WE ARE GOING HOME!!  At least that is the plan for now (you know how things change at the hospital).

This morning they moved Joey from the PICU to the PCU- which is a step down from the PICU but a step above regular peds.  The plus of the new room: its OWN bathroom!! (before I had to go to the lobby to pee).

The minuses: the 'bed' is a recliner chair that lays out into a flat surface.  The bed in the other room was 'ok' and I could get some sleep on it. This thing not so comfy, just sitting on makes my butt sore.  Not sure if i'll get getting any sleep tonight.

Now onto the not so good part of the day.  Joey had his swallow study today at 1:30.  The dr kept us waiting for almost an hour but we got it done, but not with the results we were hoping for.  Within the first drink, the doctor saw the problem that probably landed us here in the hospital in the:  While Joey can suck really well, he has a really poor, uncoordinated swallow.  When he drinks, the fluid collects in the back of his throat and instead of swallowing when he is suppose to, he swallows when he wants to, which is confusing to this throat and epiglottis because instead of closing to close off his airway when he swallows it is open some causing the fluid to go into his lungs:(  This COULD be from being intubated for a week, but since he has the same symptoms now as he did before he ended up in the hospital, its possible this is why he went into respiratory failure.  This isn't solely because he has EB.  The dr said this happens in 100% healthy kids too. Not to say EB isn't a part of the problem, but leave it to my kid to have a rare genetic disorder with the possibility of tons of complications and have yet another medical problem!  So what we thought was an EB related hospitalization may not be after all.

So for now we are no longer able to bottle feed him:(  So its a good thing he has a g-tube otherwise he'd be getting one tomorrow!  He also will need feeding therapy and we will repeat the swallow study in 4-6 weeks after therapy starts.  Who knows when that will be as this hospital doesn't have a feeding clinic and the other two locations that do are on the other side of town.  We are hoping we can get therapy from Florida Early Steps Program but it'll probably take a few weeks to get things scheduled.  So for now he is g-tube feed only.  Of course he doesn't like it since he really likes to eat and whenever he wakes up he expects a bottle to go into his mouth right away! But hopefully after a few days he'll adjust.  He will get 5 bolus feeds throughout the day and then continuous feeds overnight.  Maybe that will help him sleep through the night at an earlier age:)

He does still need oxygen; he is on .25L which is something he can go home on.  So case management is working on getting us O2 for home and for g-tube supplies.  Hopefully this can be all taken care of by tomorrow so we can go home!

His skin is so-so right now.  Things are healing but some areas still breakdown daily.  

I think that is all that happened today.  Here are some pictures of our cute baby boy:)







Tuesday, March 29, 2011

PICU- Day 12

He had a rough night last night...up every 60-90 minutes.   Crying a lot, struggling to eat like he did before we ended up in the hospital:(  We had a feeding therapy consult today and she is concerned about how he swallows.  Its not normally for a baby, even for a pre-term one.  So tomorrow he is going for a swallowing study.  He drinks a special liquid while they take x-rays to check the structure of his throat and see if there is a reason milk collects at the back of his throat when he drinks, and causes him to gag and choke.  Grace had a similar problem which was helped by reflux medication, but Joey is already on reflux medication so they are concerned there is something else going on in his throat.  That is tomorrow at 1:30pm.
We were able to modify his nasal cannula for his oxygen so he can wear is again and is able to use less O2.  The doctor keeps saying he can go home soon, but their definition of soon is different than ours.  Hopefully tomorrow after the swallowing study we will know more.  He is able to go home on oxygen since he is back on the nasal cannula so they will consider that more of an option tomorrow after the swallow study (and there are no abnormal results with that test)
His butt is still really broken down, g-tube still leaks from time to time mostly when he is crying.  But he does have long periods of being awake and alert:)
that is about all for today...i am V-E-R-Y tired and don't feel like writing much.  I am home with the girls tonight and hopefully we'll be getting to bed very soon!

Monday, March 28, 2011

PICU- Day 11

Well we didn't get to go home today and tomorrow isn't looking much better:(

He is still requiring oxygen....and for the past few hours even with the blow by his numbers still drop too low at times...not sure if its the pulse ox monitor or that he need more O2.  I am hoping its the pulse ox monitor but we are running out of places to put it.  All the places it can go on, have a lot of skin breakdown (not from the monitor).  So its getting trickier to find a place for it.  They took his central line out today which is good but now he is limited to pain meds that can go through the g-tube or by mouth.  The heart and respiratory leads won't say on his skin for some reason no matter what we try so his alarms have been going off every 5 minutes at least.  He is sleeping so I don't want to wake him to replace them with new ones.  But i'll change them when he wakes up.

This morning we got the cultures back that they took from his lungs before they took him off the vent Friday; he has pseudomonas in his lungs:(  We are waiting to see if we need antibiotics.  The attending doctor said no, but the Pulmonolgist said yes, so I am waiting to hear who's decision wins.  The attending feels he is colonized with pseudomonas (meaning he has the bacteria in his lungs in small amounts that doesn't seem to be causing problems and going on antibiotics can cause him to become resistant to it).  The same thing can happen on the skin, people can carry bacteria around on their skin all of the time but it never causes an infection.

Since he is awake and active now his skin has more breakdown.  One foot had a lot of bleeding today; his little bottom is bad again.  No matter what diapers we try or alternative to diapers, the skin still breaks down from the friction of his just moving around.  His back now has some blisters; and I just saw some on his lips though they don't seem to be bothering him.

His g-tube started leaking today:(  the tube is held in him stomach by a small balloon filled with water.  It normally holds 5cc of water.  His only had 4cc so the nurse added another cc.  Then a bit later is started leaking again, so they called the surgeon.  He checked it out and felt it was ok and if I have to refill the balloon more than once a day, then there might be a problem.  So we put two layers of transfer around the tube and it seems to be helping.  If anyone has any other suggestions PLEASE let me know!!

He is eating pretty good.  He is offered 2 oz every 2-3 hours by mouth and whatever he doesn't finish we put through the tube.  So far for me tonight he has taken 40-50cc per feeding and I put the rest through the tube.

He is awake and alert quite a bit- for over 3 hours straight this afternoon! The girls (and Grandma) got to see Joey again today, while awake too!  Summer was more interested in what snacks I had or when they could go to the cafeteria than she was in seeing Joey!  Grace brought him a little stuffed monkey that plays music.  Sami is very happy he is doing better.

Please pray that we can go home soon.  Joe is suppose to go back to work Wednesday.  He's been off 3 weeks and though his work has been VERY understanding he does need to get back at some point.  His mom is here through the weekend and though my dad is coming this weekend, they aren't staying with us so it'll be harder to keep things normal for the girls.  Plus they are back in school next week.  So it would be much easier if we are home sooner rather than later.  

So prayer for us to go home soon, for this bad spots to heal and if anyone has any suggestions on ANY of our issues PLEASE share away:)

Thank you to those who have participated in the fundraiser our friend Laurie is doing for Joey!  Here is the info for those who might have missed it before:


2. Click on online events

3. Click on shop my online event

4. Shop 

5. At check out make sure you type in JOEYFUND.

Free shipping over $30!!!

Sunday, March 27, 2011

PICU- Day 10

I am happy to report Joey had a mostly great day today:)

The not so good:

He woke up with new blisters on his chin and right under his nose from the nasal cannula he has been wearing:(   So now he is on blow by oxygen, which brings me to the other not so good, he is still requiring oxygen all the time.  The doctors are saying this is normal for someone who has been on a vent for a week.

The good:
He was able to start bottle feedings again and they wanted him to only drink 25cc in a 3 hr period.  First feeding he drank 45cc and then another 60cc a couple of hours later!  So they are going to stop tube feedings for now.  They stopped his IV fluid too but still has his central line to get his IV pain meds.  But they are going to try Tylenol w/ codeine to see if that manages his pain as well as the Toradol did since he can't go home on Toradol. 

He spent a great deal of time today awake and alert which is very good!

Right now we are just waiting to be able to breathing normally w/o the O2 before he can go home.  They are hoping he can go home on Tuesday but nothing definite yet.  He can go home on O2 but they'd like to try to get him off it first.  So we will see how tomorrow goes and then go from there.  

Here is a picture of Joey with his buddies:)


As always thanks for your good thoughts and prayers...they seem to be working:)

Saturday, March 26, 2011

PICU- Day 8 & 9 and a fundraiser

Hello everyone,  I had every intention of updating last night but once we got home I was physically and emotionally exhausted and just wanted to sleep.

For those who follow me on Facebook know Joey was extubated yesterday.  They turned off his meds around 9am and said it would be a couple of hours before he'd wake up.  So we waited, and waited.  He first began to breath on his own above the vent but he wasn't waking up.  The doctor said it was normal and he'd wake up when he was ready, so we kept waiting and waiting.  Finally at 4:30pm they decided he was ready and they removed the tube.  They gave him a breathing treatment and put him on O2.  He was doing ok.  The first 2 hours were the most critical so we just stood there and watched him breathing.  He was still pretty sleepy and slept most of the time.  Joe stayed with him last night and of course Joey woke up and spent some time with his eyes open at bed time.

Today he is still doing well.  They tried to wean him off the O2 but he didn't do well so he is back to 1.5L of Oxygen.  The doctor said it will take a couple of days to get off the O2 and he'll need to stay here another day or two of watching him without O2 to make sure he continues to do ok.  So I am not sure when he'll be released.  They started him g-tube feeds today and those are doing well.  He sleeps for a while and then wakes up for a while.  He HATES to have a wet/dirty diaper and lets us know it.  He seems to be in a lot of pain and has been getting IV pain meds every 6 hours to keep it under control.  He does have periods of trouble swallowing/breathing due to mucus in the back of his throat but he does a good job clearing it himself.  But there are times we need to suction him.  Which normally it really bad for an EB baby, but they are being very gentle and it doesn't seem to be doing any damage.

Here are some recent pictures.  Summer didn't want to hold him today so that is why she isn't in a picture with Joey.






Lastly I wanted to let you know about a fundraiser being held for Joey.  6 years ago after we lost Garrett, Joe and I attended a support group for parents who had endured infant loss.  There were 4 other couples in the support group as well.  Well all kept in touch since then.  One of them asked if there was anything they could do after Joey was born for us and there really wasn't anything at the time, but since Joey has been in the hospital, Laurie came up with an idea.  She sells Avon and has set up a fundraiser from her sales for the next week or two.  She is donating all her profits to a fund set up in Joey's name to help off set his medical expense.  We have medical insurance but we all know how insurance doesn't cover everything.  We are very humbled and thankful for her generosity. So if you frequently order from Avon and would like to participate in her fundraiser, here are the instructions on how to participate:


2. Click on online events

3. Click on shop my online event

4. Shop 

5. At check out make sure you type in JOEYFUND.

Free shipping over $30!!! 

Feel free to pass this on/share on Facebook  to anyone you think might be interested.  

That is about it for today.  Joey just got his breathing treatment and is due for another feeding around 9.  It's pretty quiet here in the hospital.  Not much to do other than watch him sleep, watch TV or play in my computer.  Hopefully I can get some sleep tonight; his night nurse is really great tonight and says he plans to take care of all of Joey's needs so I can sleep, but it doesn't take to wake me up so I don't foresee much sleep in my future tonight; but that is ok, he is worth it:)

Thursday, March 24, 2011

PICU Day 7

Today was surgery day and for those who saw my previous updates you know things went very well.

He got back to the OR around noon and at 12:30 the nurse came out and said the dr wanted to talk to us (so soon!?!)  The ENT was very surprised (but happy) that his airway looked much better than expected.  He has some irritation and swelling at the back of his throat and vocal chords and a small mucus plug at the top of his lungs, but overall it looked really good so NO TRACH!!!  I have pictures that the doctor gave us and i'll post those once they get scanned into the computer.

He is still in the vent but they hope to remove the tube tomorrow and allow him to wake up and see how he does.

Since he was already in the OR and the g-tube surgeon was already there, we went ahead and had the g-tube placed.  We don't have to use it all the time, just when he doesn't drink enough by bottle or when he is sick and we can use it to give meds.  So in the long run it will be a good thing to have; like an insurance policy!

So far he is doing good.  Tomorrow they plan to remove the tube and as long as he continues to remain stable we will go home in 3-4 days:-)

The doctors and nurses at this hospital have been GREAT!!  We couldn't be happier with the care he has been receiving.

That's about all I have for now.

Thanks for all the good thoughts, prayers, visits and food:)  We truly appreciate it.

Surgery update #2

12:45pm surgery update: the scope went great. airway a little irritated but over all looks really good and no trach is needed!!!!!!!!!!! We are going to have the g-tube placed since he is in there and we will have it in case he stops eating at some point like many babies with EB do. Will update more once he is out of surgery

Surgery update #1

They took him back around noon and they surgery will last about 2 hrs.  Will post another update when we know more.

Wednesday, March 23, 2011

PICU- Day 6

I am very tired and have a ton to do, so this will be short, but surgery tomorrow is scheduled for noon-ish....the emphasizes being on the 'ish'.

The plan, remove the breathing tube and scope his airway.

If it looks good and there is nothing that is causing him not to breath, they will replace the breathing tube and start to allow him to wake on his own.

If the airway looks bad (blistered, inflamed, etc...) they the ENT will place a trach and the general surgeon will place a g-tube. 

Either way we are looking at being in the hospital till mid to late next week pending NO complications come up.

I will post an update once we head into surgery.

Please continue to pray...we will deal with either outcome that may happen, we just want him alive.

**UPDATE** as of tonight surgery is scheduled for 11:15am.  But nothing happens on time in this hospital!  lol

Tuesday, March 22, 2011

PICU-Day 5

Well folks, we have a lot to share with you!

Joe stayed with Joey last night and he gave everyone quite a scare (in a good way).  He decided to wake up on his own!  He started moving his arms and legs and mouth and making noises.  Normally that is  good thing, but when you have a tube down your airway all that moving around isn't a good thing!  So now he is on a double dose of the paralytic medicine!

This morning x-ray was a little better than yesterday and all blood cultures came back negative!  So he is off the antibiotics. He still has a lot of mucus and fluid on his lungs- mostly from laying in his back for the past 5 days and getting IV fluids, so he got his first dose of lasix today.  Since then he has been peeing LOTS:)

The plan at rounds today was to get an ENT and pediatric surgeon consult sometime today or tomorrow.

Late this afternoon the ENT came up (I wasn't here but Joe was).  He has dealt with EB before and the plan now is to go into the OR on Thursday, remove the tube from his airway, scope his entire airway to see what is going on there.  If there is just a lot of mucus and gunk then he'll clean it out and see how he does.  If there is still a lot of inflammation and/or blisters then he will trach Joey. 

If they trach him, then the pediatric surgeon will place a g-tube (a mickey button) at the same time.  The surgeon has EB experience (locally too!). But if they don't trach then no g-tube.  But that is ok.  We are fine with this plan.  Neither the g-tube or trach are 100% permanent (though we do know they could be)  we just want him alive.  His skin and airway should heal over time and there is no reason to think he won't turn out just like Sami.  We just need to get past this point, and if its a trach that will get us past this point, then that is what we will do.

Because of the possible g-tube, he will need to have a barium swallow and that is scheduled for sometime tomorrow morning.  We don't have a time for surgery yet but hopefully tomorrow we will know more. 

Tonight he is keeping his nurses on their toes...alarms keeping going off..O2 levels going up and down (too much fluid on his lungs needs more laxis)


hopefully I can get some sleep tonight with all these alarms going off!


On another note, Summer had her 5 yr well visit today...50 pounds and 45 1/2 inches tall!  She also got 4 shots...and is not very happy with me right now.  But she doesn't need anymore till she is 11! However, she could care less about that part.



Good night all!




Monday, March 21, 2011

PICU- Day 4

Today have been an eventful day...

The good: his skin has continued to improve! Most of his wounds from birth are either healed or almost healed.  Very few blisters too:) They continue to increase is feeds ever 2 hours since he is tolerating them well.  His breathing and heart rate remain stable. 

The not so good:  the chest x-ray this morning showed that he has a bit of pneumonia (they think).  there is a cluster of mucus (or a mucus plug) in a part of his lung that caused it to partially collapse.  They started him on another medication to help break up the mucus but after the first dose the entire left side of his face turned red.  At first we weren't sure if it was the medication or just a conscience, but when the same thing occurred after the 2nd and 3rd dose, it seem he is having mild allergic reaction to the medication.  It doesn't seem to be serious and the medication is helping so for now they will continue to give him the medication and monitor him closely during the treatment to make sure the redness doesn't spread or turn into something worse.

Late this afternoon the dermatologist who saw him in the NICU came to see him again and contacted the EB clinic in Cincinnati and their recommendation is to trach Joey (and place a g-tube) as they feel will this will likely happen again since his airway is so small and it wouldn't take much for another blisters or inflammation to land us back in the hosp in respiratory failure. 

So right now we are trying to find a local ENT willing to do the surgery.  Hopefully tomorrow we can find someone and talk to them about when all this might happen.  His lung issues have to be 100% resolved before he can have any kind of surgery.  So right now we have no idea when any of this will be happening.  My guess is that he'll be in the hospital another week or two.  But that is just a guess.  We hope to get more info from the doctors tomorrow.  

Joe is with him tonight and i'll go back up tomorrow after my 2-week post-op checkup with the OB.  

Good night everyone and thanks again for the good thoughts and prayers.  They seem to be working:)

Sunday, March 20, 2011

PICU-Day 3

Greetings from the PICU!  

Not much to report today.  Joey is still stable. He did  receive some blood last night has he was a little anemic and it seems to have helped as his numbers today were better.

He also needed to start getting nutrition again so we decided to have an NG tube (tube from the nose to the stomach placed).  His IV isn't going last much longer and they can't put nutrition through his central line and he isn't stable enough for a g-tube placement so we had little choice but to go with the NG tube.  He is getting 5cc of formula per hours on continuous feeds.  Those just started 2 hours ago but so far so good!

As for what to do next in terms of his breathing, the dr is reaching out to some ENT's and other medical professionals to get their opinion on what the next step to take is.  I was able to get a hold of the EB nurse and she is going to get one of the doctors at the EB clinic in Cincinnati to call down here tomorrow and speaking to the attending on call and off their advice on what to do next.  So hopefully by this time tomorrow we will have a better idea on what to do regarding is airway.

Summer's birthday party went GREAT today!  She had a lot of fun with her friends from school.  I typed up a little note about EB and what happened with Joey so they could read it and I wouldn't have to explain it over and over again.  They were really great and some have offered to help get Summer from school so I don't have to take Joey into the classroom to pick up Summer from school. 

So all in all today was a good day.  I am flying solo in the NICU tonight.  Joe went home to get some rest and get the girls off to school in the morning.  We'll trade off tomorrow as long as Joey remains stable.   I don't have the ability to get pictures on to my lap top here in the hospital but hopefully tomorrow I can get some pictures posted.  

Thanks again for your thoughts and prayers....it makes things a little bit easier to deal with.....                                                                                                                                                                          

Saturday, March 19, 2011

PICU- Day 2

Here where are almost 24 hours later and he is doing as well as he could be considering everything.  His heart rate has been stable all day, same with this O2 levels and respiratory rate and he has some leakage around his tube which is a good thing; it means the swelling is starting to go down!  Right now its a wait and see game.  No one is real sure when it will be the right time to exubate him.  There are small things they can do to see if is able to breath on his own again.  But if they pull the tube too soon his airway could collapse again; if they wait too long it could cause more damage to his upper airway.  We could scope his airway to get a better idea of what is going on down there, but we run the risk of causing more damage from the scope itself.  So it's a wait and see game right now.

I know many of you are shocked to read someone with simplex has airway issues..well it can happen.  Apparently it happens in about 5% of those with EBS-DM.  And we seem to be the not so lucky ones. 

The airways of babies are so small to begin with, and when you add blisters and inflammation it turns into a bad situation real quick.  Thankfully we caught this quickly with Joey instead of too late with Garrett.  The doctor feels that if no other complications arise, Joey should make a full recovery, but we still have a long road a head of us.  There is also a chance this could happen again at some point in the future.  We hope it never does, but until he is older and has a bigger airway there is always a chance.  We have talked about having a trach placed (a breathing tube that is surgically placed in the front of the throat, but the doctor wants to use that as last resort. 

So that is pretty much where we are at the point.  Tomorrow is Summer's birthday party and as long as Joey is still stable, Joe will stay at the hospital with him and I'll be at Summer's party.  It's only for a couple of hours so things should be ok here during that time.

thank you for all your thoughts and prayers!  We truly appreciate it!

PICU- day 1

For the past few days Joey has been struggling with eating.  Overall he eats well, but it takes him a while to get started with each bottle but once it gets going he drinks fine.  He was also really garglely when he breaths.  Well Friday he got worse so we took him to the doctor.  She felt he needed to be checked out more than she could in the office and sent us to the ER.  While there they did blood work, chest xray, all were normal.  We figured it was blisters in his throat or airway and they wanted to keep him overnight for observation.  Once we got upstairs to peds, things went down him, REALLY fast.  They put him on O2 and sent us to the PICU.  Here, they started steroids and breathing treatments to help reduce the swelling in his airway. He was responding slightly but not a great deal.  He began retracting when he took a breath and then the stridors started. While we spoke with the dr about if we should intubate now or wait till he needed to be, Joey made the decision for us by going into respiratory failure.  He is now on a ventilator in a medically induced coma and has an IV and a central line.  He is getting IV fluids; his potassium and sodium are a little low.  His albumin is also low so he is getting that too.  So far no signs of a blood infection!  He is on two IV antibiotics to hopefully prevent infections.  

The good: he is FINALLY calm after crying almost no-stop for the past 2-3 days.  Before intubation his heart rate was in the 230's!  Now is down into the 170's-180's.  He is breathing more comfortably too.

The bad: our nightmare with Garrett all over again:(  it is like a never ending nightmare....
There is concern about damage the tube in his throat will do long term, but right now we have a living baby still and that is all that matter,  We will deal with the rest as it comes along.

The girls are with Joe's mom....she was suppose to arrive Tuesday but didn't make it till today due to car trouble.  We are still trying to decide about Summer's birthday party this weekend...we know her friends (and their parents) will understand, but Summer won't and we already had to post pone her party once.  Joe has another week off work which is good.  

For those wondering what you can do to help: 

1) PRAY, A LOT.  the doctors are doing what they can and Joey is a strong baby but extra prayers won't hurt anything:)

2) prayers for the girls too, especially Sami...she was too young at the time to know what happened with Garrett but she understands way more now and I am worried about what this will do to her.  

3) the girls are taken care of, but if anyone (local) want to drop a meal off, (as much as I hate asking for help from others) it would help my mother in law out.  

4) i have wanted to make a blog button for Joey for my blog, but haven't had the time so if anyone that knows how wants to make me one, feel free.  I know its an odd request at a time like this,  but I cope by keeping busy and since there isn't much I can do for Joey's care right now, writing keeps me from crying all the time, wondering what we did to deserve this again...

I will try to post daily with updates....but for now assume no news is good news....

Thursday, March 17, 2011

Baby Joey: 9 days old

Just wanted to post a quick update and ask a few questions, hoping for suggestions:)

We have decided to go with the nickname Joey:)

So far he is doing good.  Some wounds have healed; others have gotten worse.  Mainly his knees, his hands, one ankle and one wrist.  His bottom was really bad but is starting to look better! 

He sleeps about 2-3 hours stretches (more during the day then at night).  He is eating well too (22 oz in the past 24 hrs) up from 18 oz the day before.  But getting him to start eating at each feeding is a S-T-R-U-G-G-L-E.  He cries so much and almost nothing we do can calm him down.  We have tried Tylenol ( we don't want to do anything stronger yet), he is on lactose free formula as all the other kids (and me) are lactose intolerant,  and Zantac for reflux but nothing seems to help.  He just screams and screams, then eventually starts to drink and sucks the bottle right now and usually is out cold afterward, but sometimes will scream for a while after he is done.  I am very worried about all the damage he is doing to his airway.  His voice is horse at times (but not all the time) so I know he has some blisters/irritation on his vocal cords.  His breathing seems normal.  He does breath heavy/fast at times, but no stridors and he doesn't appear to be retracting with his lungs when he does breath.  He does sound gurglly at times, but I remember Grace doing the same thing and the doctor said it was normal for preemies.   So I really don't know.  I though about changing to the formula that is already somewhat broken down so its easier for him to digest but I am not sure if its the right thing to do. 

Our doctor knows nothing of EB besides what we have told her.  But she is willing to see him and treat him as a 'normal' baby as long as we handle the EB stuff as much as possible.  Which we are fine with.  But times like these...its hard to tell if its EB related or normal EB stuff.  She thinks it could be normal baby issues or EB issues.  So in other words, really no help.

We weighted him today and he was btw 7-8 pounds:)  He goes in Tuesday for his 2 week checkup.  So hopefully he has gained so weight. 

I am working on a post about this birth story which is almost done:)

I plan to update frequently so check back often or just hit the follow this blog button up at the top left of the screen and if you follow other Google blogs, you'll see updates when I post them in your 'following blog list.'

We have help for the next 4-5 weeks, so it will be a little easier to update.  Plus i find blogging therapeutic so its good for me to blog:)


Here are some pictures of the girls holding Joey.




Monday, March 14, 2011

there is nothing simple about simplex

I have been debating about doing a post on this topic or not.  But I see it as a way to educate those who don't know much about Epidermolysis Bullosa and for those who don't know much about the differences between the types of EB there are.  

I think when most people think of Epidermolysis Bullosa Simplex, they think mild and a simple form of EB.  And while there are mild forms of simplex, the kind we have, EB Simplex Dowling Meara is far from mild or simple, especially during the first couple years of life.  In EBS-DM, EB is usually present at birth and can range from many blisters to massive areas of skin loss.  

When Sami was born she was missing skin on her ankles and wrists.  The ankles were a reddish-purple color and the skin was so thin, the slightest tough caused to come off and bleed.  As the days went on, more and more blisters appears and more and more skin come off.  By the time she was 4 months old 75% of the skin on her body was either missing or severely blistered.  Unfortunately I don't have any pictures of her when she was that young that I can post on here.

With Garrett, he was more severe at birth than Sami was.  He was missing skin on both knees (it looks like upside down hearts had been carved out of his knees.  Both ankles and feet were missing all their skin and they were dripping blood.  Again, we never took pictures of his wounds at birth.  And like with Sami, in the days that followed so did the blisters, most of which had fluid in them that were a golden-honey color (very common in EBS-DM).

Now with baby Joey, he had all the wounds Sami had at birth, PLUS the wounds Garrett had, PLUS a few blisters, and he was also born with 2 bottom teeth.  A common occurrence in EBS-DM, though it doesn't occur in all who have EBS-DM.  Sami nor Garrett were born with teeth, but I was.   

We didn't have much time to get many 'clinical' pictures of Joey before we had to wrap his wounds, but below are some pictures of his wounds within a few hours of his birth at his first dressing change.  They are of his feet, knees and legs.  I don't remember which leg was which but they were very similar at birth.

Now he is 6 days old, his wounds from birth are healing but are still very delicate and bleed at the slightest touch.   His hands are now missing skin and are pealing very badly.  His diaper area is severely blistered.  His arms are ok and vary from day to day.  His lower back is starting to break down as well as his lower tummy.  Around his mouth is also really bad at times.  We pop anywhere from 25-30 blisters a day.  Some small, like the size of a pin head, others are the size of quarters.  Changing his diaper can take anywhere from 5-20 minutes depends on how much of his dressings got dirty.    I don't mean to sound like I am complaining, just to show that just because someone has EB Simplex, doesn't mean it is always mild or simple.




WARNING: GRAPHIC MEDICAL PHOTOS BELOW:








Friday, March 11, 2011

Joseph Stephen Denslaw, III

We have a new member of the family!  Joseph Stephen Denslaw, III made his arrival on March 8, 2011 at 3:09pm.  He weight 6 pounds 8 oz and was 49 cm long (which I think is about 19-20 inches).


He was born with Epidermolysis Bullosa (EB). We knew it was a possibility, but were still shocked when he was born.  He was missing skin on his wrists, both knees, ankles, top of the feet and on one leg, he is missing most skin from the knee to the ankle.  So compared to Sami and Garrett, he is the most severe when it comes to skin loss at birth. But so far he is doing really well!  He is eating 30cc's or more every 3 hours!  He does well during dressing changes and so far is an overall happy baby:)

I will post more about his birth story soon.  I am going home today and as of last night so is he, so once we are home a settled I will post more.  Here are a few picture for you!