3-15-2010 The Number Seven

The number seven is the number of perfection. Joey is my number seven. He is perfect because he is exactly who God designed him to be.

God's design is not always easy to understand with our very human minds, but I still believe God has a perfect plan for Joey's life.

Today's appointment did not go as I'd expected. We spent 3 hours in hearing testing. It appears that Joey has no hearing responses in his right ear, and almost no responses in his left ear. with several different decibels, and several different sounds, there were only 2 at the highest volume allowed by the test, that showed any response in his left ear.

This was a total shock, because he appears to respond normally to everything around him, but as I watched him today, I could see that his responses were actually to touch and sight rather than to sound.

The game plan:

Another appointment and test in 4-5 weeks.

Hearing aids....ASAP (this is because we want to stimulate the hearing sensors of his brain now...while they are still developing.)

Possibly Cochlear ear implants, depending on how things go, in about a year. (They can't do that surgery before he is a year old.)

He will be speech delayed as a result of not hearing well. So the next thing I can do is hunt up all my "Time for Signing" , "Talking Hands", and "Baby Sign" movies to help him communicate as well as possible, as soon as possible.

So, is God in control? Yes!

Do I understand? No!

Do I trust that this too is for our good? Yes!

Our Disappointments are God's appointments!

God has a plan, and Joey is still perfectly in that plan.....

P.S. Chris says Joey hears just as well as the other 6, so there shouldn't be any problem! They all hear the same ...nothing new if this one doesn't actually hear sounds!

Jon and Joey

When Joey came home from the hospital everyone was excited to see him. My brother, Jon, was very interested in what was going on, and what the wires were for (apnea monitor). I told him that it was to alarm and wake me up if Joey quit breathing.

Later Jon told mom, "Joy, has to plug her baby in at night so he can breathe, the poor little tike!"

So we have a "plug-in" baby!

Kiffer and Joey

Every time I take Joey to the Dr., Kiffer is at the car door before I can open it, when we get home. He has been so concerned about Joey...Always asking, "Is our baby here? Is he sick again?" Tonight he came, as he often does and said, "I just want to look at our baby." But this time he added, "he is our baby now, Jim and Crystal gived him to us."

My brother and his wife had Sammy about 6 weeks before Joey was born, but my kids have never seen the 2 babies together, so Kiffer has decided that there is 1 baby, and he is always checking to make sure that "our baby" is still here!

Everyone says Joey and Sammy looked a lot alike. I guess it is time to show the kids the 2 babies together...

Eric thought that Sammy was Grandma's baby, because that is where he saw Sammy...Grandma's house.

02-14-2010 Joey...one month already!

Joey is 1 month old already! He is happy and starting to gain back the weight that he lost from being so sick. Someone must have told him that he was still too little...he has been eating constantly the last 2-3 days!

Everything is going well so far. We still won't know any more about the blood clots or the seizures for a couple months yet, but these are "controlled" with his meds for now. Fortunately my cell phone has a Calendar where I can set several alarms a day, so all his med times are in my phone. This works well, as long as I keep the phone, the meds, and the baby with me...so far, not a problem.

1-29-2010 Joey ... We are home!!!

We got home about 7:30 tonight. Now we are overwhelmed with all the love that brothers and sisters have been saving up for the last 10 days!

I have to get us onto a good schedule (with an alarm clock) for meds. At least he is only on 2. I just tend to forget, and these I can't afford to forget...so an alarm is important.

We have Apnea monitor at night, Lovenox injections 9am & 9pm, Phenobarbital (which he chokes on) 4pm. Not a lot compared to some people, but a lot for me to remember.

Thanks for all your prayers.

Time to go spend time w/ my little people...and give baby meds.

Joy

1-28-2010 Joey...home soon

1-28-10 Joey...home soon?

It is really hard for me to call out, I have to get the ward secretary to make the call for me, and then transfer it to our room. I am glad of calls tho. If no answer try back in 15 minutes...if I'm busy it is rarely for more than a few minutes at a time....and I'm not sleeping during the day, so you won't wake us.

Phone 455-7000, room 5511.

We should be going home soon...Lord willing. Maybe in the next day or two. I had to update my CPR training tonight, in order to take him home with an apnea monitor. I have to give him a shot tomorrow so the nurse can see that I know how. We are also waiting to get his meds together for home, and appointments for follow up with at least 3 Dr's.

Thanks!

Joy

1-27-2010 Joey...We have a room!

Joey is out of PICU.

So our new room number is 5511, the switchboard number is 455-7000.

We are down to 2 monitors...An apnea monitor, and a O2 sat. monitor (not sure why they don't have that all in 1...I'm sure I've seen them before.) Still this is much better than all the EEG wires, IV lines, and regular PICU monitors he was hooked to!

I guess they are still planning on sending us home this weekend...once they are sure he is staying hydrated.

I know that he will be going home on 3 meds, and an apnea monitor. This is much better than how sick he was when he came in, and all that he has been through this past week.

We will also be getting a referral for a pediatrician, and following up with a neurologist (the same 1 who saw him here), and a hematologist.

Some of the issues Joey has had or is still dealing with:

Bilirubin Toxicity

Dehydration

2 clotted veins in his brain, leaking fluid into his ventrical space in the brain

MTHFR (a chromosomal marker that indicates he may be more prone to clotting.)

Apnea (probably a combination of 2 types)

Seizures

We have no idea which of these are related, or which caused others. Some of these have been resolved, some treated with medication, and some will take time or will not go away (the MTHFR is probably permanent...as it is a marker in his chromosomes).

Some of the treatments he has had:

an ambulance ride

a helicopter ride

almost 24 hrs of bright blue lights and eye mask

a blood exchange

1 MRI (sedated and intubated)

1 Lumbar Puncture (while sedated for MRI)

2 CT scans

several X-rays

3 overnight (12-24 hr) EEG's and 1 for 45 minutes

days when he was not allowed to eat, or too sick to eat

NG tube

Countless labs

IV fluids and meds

injection meds

oral meds

Continuous Monitors

8 days in PICU (he was only 5 days old when he got sick)

Several types of O2 (room air, Nasal cannula, high flow, and CPAP...High flow and CPAP both under high pressure blasting into his nose to keep his air way open.)

Many days of being rubbed, thumped on the feet, jostled, beat on the back, and even O2 bagging to bring him out of Apnea spells...as often as 8 times an hour.

It has been a rough week for the little guy, but he has weathered it really well (says proud mommy!) We will miss our nurses and Dr's in PICU, but not enough to go back!!

God is so good...I have a baby that "looks" healthy again! he is acting like he should and doing much better than many people expected. It will take 3-6 months for the clots to resolve, and he could have developmental delays show up even 18 months from now, but right now we are not expecting trouble. We think and hope that his problems have been found and should resolve in about 6 months. (one day at a time.)

It could have been vastly different. Joey could have died with that first blue spell at home Tuesday night, a week ago. He could have never recovered from the first days of toxicity, and had severe brain damage. So far it looks like he will make a full recovery. God has a plan for this little man, can't wait to see what it is!

Joy

1-26-2010 A good day

Joey has not had any more Apnea, or seizures Since his meds last night (about 4pm). He has been very sedated from these meds but after about 48 hours of apnea and possibly seizures, he really needed the rest. He ate 1 time during the night. We took the CPAP off to feed him at 8am today, and they said leave it off. He did great without it so he is now without O2. The EEG is still on to monitor how he does on the meds and make sure he doesn't have any more seizures or other unusual brain activity. They are doing labs to see how much medication he needs.

He is still sleepy, but starting to eat better, and enjoying snuggling. He looks good, his color and ability to focus his eyes are much better, and he is starting to look and act more like he did before he got sick.

Right now he is still attached to: IV, Heart, Respiration and O2 monitor, and EEG. This is a lot of wires, but he can be held (just have to stay next to his bed, as all these wires are holding him in 1 place).

The neurologist wants to keep him 1 more night on EEG. He has done well, but they want to keep watching and make sure they didn't miss something.

The Dr said we may go to a regular room tomorrow if he keeps doing well. (that will be nice, as we should get down to just an IV...so more "wiggle room" for holding and cuddling.)

His meds are sedating, but as the dose gets adjusted, and he gets used to it, he should be more awake.

God is good! Can't wait to see what HE has in store for this little one's life!

Joy

PS. the only alarm going off today was his IV beeping!

1-25-2010 Joey ... Hephalumps and Woozles

We are still finding / trying to find more pieces of the puzzle.

It appears that Joey may have 2-3 types of apnea. Which would help explain the frequency.

They put him on nasal CPAP to help with the breathing...it forces so much air in that when he does have apnea, he is more likely to breath on his own again. This is a little mask that fits over his nose and has a bunch of tubes going up over the top of his head. He looks like a little Hephalump (from pooh's hephalumps and woozles).

Seizure apnea...While it did not appear on the EEG last week, it now appears Joey has developed Seizures from the blood clot. These were seen on a new EEG today, and will be treated with Phenobarbital and monitored with an overnight EEG tonight. These should go away when or before the clot goes away. This does not mean the the clot is worse...only that it takes time for the symptoms to show up.

Stress apnea (from Billirubin levels)....not much we can do about that by itself right now, but it should go away and treating the seizures probably will help with that too, as Phenobarbital is somewhat sedating and should help with his stress level.

Sleep Apnea...This they were going to check with a sleep study, but feel that treating the seizures was most important, and as they know he has the first 2 types, they feel that he probably does not have significant sleep apnea and the sleep study would require a night in the sleep lab, which means being out of PICU overnight...nobody was real comfortable with that right now....he needs to be where he is.

He is able to take a bottle, and may get strong enough to nurse again, before going home. He probably won't want to eat tonight, because he actually got 2 meds to get the seizures under control (so he is knocked out right now)....normally (hopefully) he will only be getting 1 med, and will be alert enough to eat as he needs to.

So we are still working on our 2 goals to get home...get rid of the apnea, and get him eating well. And long term (3-6 months) get rid of the blood clot.

The Dr's keep saying to expect to go home next weekend. I'm not holding my breath, but now that we finally have a cause for the apnea, and the cause can be treated, it is starting to sound reasonable that we may make it home then.

Peace in the midst of life's storms....

Joy

1-24-2010 Joey...Apnea again

When we put in the NG tube for feedings, Joey started having apnea again. We removed it, but the apnea is not getting better. This is the only procedure I have not felt totally at peace with, but I didn't say anything...it seemed logical, I just had a gut feeling....

Joy

1-23-2010 Joey ....Good news

They started Joey on a blood thinner last night. After all the Dr's consulted this seemed the best approach. If the clot were to grow, he would have a stroke and likely brain damage (according to the neurologist). If the thinner caused bleeding, that could be treated or drained.

The CT to check for bleeding this morning did not even show the bleeding that they had seen yesterday. I asked if that was because CT is not quite as sensitive, or because the bleed had already reabsorbed and gone away. The Dr said it could be either, but if the bleed had grown it would have shown up on CT. So we are no worse off than yesterday, and maybe better.

The plan now is to tube feed today, because he is too hungry to eat without choking, and we don't want to start the apnea again. He is on high flow O2 which helped to stop the apnea about 24 hours ago.

Tomorrow they will stop the O2 and allow him to eat (nurse or bottle...which ever works). If he handles room air and eating w/o any trouble (apnea) he can go to a regular room.Then when he is eating well enough to avoid dehydration, he can go home.

He will still need "3-6 months therapy" to treat the blood clot (according to the hematologist), but this is something they can teach me to do at home.

So my summary of this is: If everything goes perfectly, no more apnea, no other issues or problems, We maybe home in about a week with a basically normal healthy baby. As far as we can tell so far he has no brain injury at this point just the clot, which will take time and treatment. This is just a guess as things don't always go as planned....we must still take things 1 day at a time, but we are starting to see light at the end of the tunnel.

It is a relief to finally have some answers about causes, symptoms, and treatments. Hopefully nothing else will come up, and the symptoms he has now will continue to go away.

Thanks for the prayers! God is still in control!

Joy

1-22-2010 Joey...Apnea and An open ended answer

Joey started having very frequent episodes of apnea, yesterday afternoon. In an effort to find the cause, many more tests have been done. EEG showed no seizures. They are still doing all kinds of labs.

MRI showed clotting in the superior sagittal sinus, and the sigmoid sinus (both are veins). while both are clotted they are also leaking a tiny bit into the ventricle space (light blue space in the pic) below the superior sagittal sinus.

(2 pic links below)

http://www.rci.rutgers.edu/~uzwiak/AnatPhys/Blood_Vessels_files/image036.jpg

http://www.google.com/imgres?imgurl=http://www.obfocus.com/images/csf.gif&imgrefurl=http://www.obfocus.com/questions/qanda10.htm&h=358&w=322&sz=25&tbnid=qZzBSB3s6XCdSM:&tbnh=121&tbnw=109&prev=/images%3Fq%3Dventricles%2Bof%2Bthe%2Bbrain&hl=en&usg=__v1WeYTkwy_uHOypqnkAeiHhfWQM=&ei=rR5aS4S7B5CXtgeGy62kAg&sa=X&oi=image_result&resnum=4&ct=image&ved=0CBsQ9QEwAw

We think this is the cause of the apnea. The treatments are "time" which we think his body will eventually clear the clot or reroute the veins. Problem being too much apnea could cause O2 deprivation and more troubles.

Another treatment is a blood thinner, which could shorten the healing of this clot, but could make the leak worse causing pressure on the brain or other bleeding problems in the body.

Also if this was caused by something other than the jaundice...like a fluke genetic disorder, they would be different treatments than listed above, so genetic labs are being done.

The Dr is consulting with Hematology because they work with blood disorders to see what would or might be the best treatment plan. If they reach no clear conclusion...such as this is definitely best for this child because of A, B, or C.... we may be presented with options and asked to make the call. Right now while waiting for more results and info, they are saying just watch him this weekend and see how he responds...and hope and pray he doesn't end up on the Ventilator for respiratory distress, Possibly do a sleep study Monday. Still so many variables we have no idea if / when he will get better. Tho I trust he will. (no chance of going home before Monday, and maybe much longer....)

There are also so many things with or without treatment that "could" happen. Either way, pressure could build on the brain causing more trouble. Or other issues could show up from Billirubin toxin that have not been seen yet.

It is amazing...the peace of God! I have not been overly concerned about the outcome, because I know Joey is in God's hands. Nothing can happen that God does not allow. I still have the emotions of "momma", but with God's peace, I am able to step back and look at the situation reasonably and medically without getting frantic. We are in a good University Hospital. I am pleased and thankful for the care and detail that is taking place. Humanly speaking he is getting the best possible care. As parents our concerns are addressed as quickly as possible. On a bigger scale, God may use medicine or He could touch and heal him, whatever, we feel His hand and know He loves Joey more than we ever could...tho that doesn't seem possible as a parent's love is pretty big.

Thanks for your continued prayers!

Joy

1-21-2010 Joey and jaundice...the whole long story...God is good!

Joey is doing better. They did turn off the lights at 11 pm last night, tho the labs are still needing to come down more. If they don't go back up, the lights will stay off, now he needs to eat to keep the labs down. I got to hold him for the 1st time in near 24 hrs when they turned off the lights! That felt so good! I'm still pumping to feed him, as he is too wore out (from being so sick) to nurse. But he looks much better, and is also having fewer bouts w/ apnea (also caused by the jaundice/billirubin levels being so high). If he holds his own, we may get to go home tomorrow.

To back track for those of you that I had not told...

Joey (5 days old) turned blue/purple at home at 12:30 am Wed morning. Seemingly no reason...he'd been normal, but a little jaundice like all my babies....Praise God, I was awake to see it! I'd almost gone to bed 2 hours earlier. I picked him up...color returned to normal, except a shadow around his mouth. We decided to go to Hosp. 30-45 min away.

2-3 min down the road it happened again (dome lights are not good for trying to watch a baby in the dark.) about 7 min from home is an EMS dispatch station....I called 911 and told them to alert this station as we were coming in w/ a blue baby. We pulled up and transfered to EMS while hubby followed (at 100 plus mph w/ lights and sirens...after another blue spell in the ambulance).

At Hosp. they worked with him, put him in isolete w/ blue lights, etc. They said his Billirubin level was up to 33. Not sure why he was turning blue but this could be the cause. The wanted to transfer him to a bigger hosp. where he could get a "blood exchange" as numbers this high were critical, and could possibly cause brain damage. Blue lights were not enough. They arranged a chopper transport for him, but daddy and mommy had to take their own car...could not ride w/ baby (I had peace about this, but was broken-hearted to let go of my baby...) We left at the same time as the Chopper crew...5:15am. At 6:30am we got to the Hosp. Joey had been here about 30-45 min, and was settled in a room, so we saw him right away. (4 big blue lights, and all the tubes, wires, etc that go with a stay in PICU). But he was still alive and doing ok considering....still having many bouts of apnea. (feeling helpless for all the mommy things I can't do, snuggle, nurse, etc.)

So after a day of labs for everything....to see if infection or what caused it, or if just not eating enough....they did the blood exchange to help remove the billirubin, and lights to 11pm, when his levels came down to 14. They finally found the cause....ABO incompatibility...I had never heard of this, and did not realize that his blood type was different from mine (I thought my hubby and I had same type, but must have not known his type was diff.)

I'm O+ and Joey is A+. at the end of my preg. some of his blood passed the placenta to my blood. My blood made antibodies to fight this. Then those antibodies passed back to him, basically causing his blood cells to die faster than normal causing toxic levels of billirubin. So the blood exchange also helped to remove those antibodies, so now he should be fine, as long as his body can kep fighting the billirubin levels down to 0 and they don't go back up.

This may also explain why all my kids were jaundice...they just never got critical, so we had no idea.

Through all this God has been so good. Every step of the way, I saw His hand. Even not knowing the outcome, and being overwhelmed emotionally, I still had a peace that only God can give!

The Dr's and nurses have been wonderful, at both hospitals. Not just concerned for Joey's health, but for mine and my hubby's well being. Everyone has been great about my new mommy emotions, and quick to offer any answers they could with good explanations, etc.

The ER Dr even prayed with us before putting Joey in the care of the chopper crew! Many Sweet Christian people around and even several w/ or from big families that thought it was awesome that we have 7 kids. (that is something I don't get often....most people seem to think I'm crazy to want a big family.)

Thank you for reading my ramblings and praying for us!

Joy

1-20-2010 Joey and Jaundice

Apparently what Joey has is ABO incompatibility.

http://en.wikipedia.org/wiki/Hemolytic_disease_of_the_newborn_(ABO)

He is doing much better, but we are still using lights to get his jaundice low enough. He had a "blood exchange" which helped.

Best case....if his 11pm labs are good enough, he can come off the lights for awhile to see how he does then. If all is good, we may get to go home Friday morning.

Thank you everyone for your prayers!

Joy