Back in the Saddle

We are getting back into the swing of things. Today was filled with therapy, doctors, and GOOD NEWS! I love good news!

I discussed my concerns with Liesa at PT today. The prognosis looks good. She worked on some muscle groups, performing some tests on him, and feels his weakness is not pathological. Basically that means that he should regain everything he's lost as he continues to heal from his illness. This was a big concern, since it seems he loses something major after a big illness (7mos pneumonia/RSV - hearing loss, 15 mos pneumonia - motor skill loss, 21 mos pneumonia - nystagmus and loss of eye sight...). The concern here is that whatever neurological condition he has might be degenerative and result in continued losses over time. Of course, we are praying this is not the case, but we won't really know until he makes it through some milestones. He has had several boughts of pneumonia with no apparent loss, but we just have to wait and see. It always makes me nervous. Anyway, PT was our first good news.


Booth testing went great today! William's threshholds are great, his hearing is perfect*, and his understanding is impressive. Even his speech is coming along!


The last visit was to William's CI surgeon. It also went very well. William's recent ear infection and drainage has completely cleared up and left no residual damage. Implants are exactly as they should be and our recheck appointments have now moved to YEARLY! Wooo-hooo!

All in all, a good day! Praise the Lord!

*just to clarify: when I say William has perfect hearing, this is only with his processors on. The cochlear implants did not heal his deafness, only make a way for him to receive sound since his cochlea does not work on its own. He is, and will always be, profoundly deaf, but is able to hear when he wears his processors. When he has them off, he gets absolutely no sound at all.

"Behold, I will do a new thing; now it shall spring forth; shall ye not know it? I will even make a way in the wilderness, and rivers in the desert." Isaiah 43:19

A Light Heart

Okay, this post doesn't really have anything to do with William, except that I really needed some laughter after the long indoor stay. My sweet father-in-law sent me this link and it made me laugh soooooo hard, I wanted to share it. If you need a good laugh, take a look at this, but whatever you do, don't bungee jump naked!

http://www.youtube.com/watch?v=L1_W0LCHwK4

"A cheerful heart is good medicine, but a crushed spirit dries up the bones." Proverbs 17:22

A Word of Thanks

"But my God shall supply all your need according to His riches in glory by Christ Jesus." Philippians 4:19


Michael and I wish to express our gratitude to those of you who have been so very helpful to us over the last 6 weeks. You have blessed us beyond words! It has been so humbling to have all the visitors (even with risk of infection), meals, calls, prayers, gifts, and help for our family. We have also received anonymous financial gifts that were extremely timely for us - those of you with children with special needs totally understand what I'm talking about! Whenever William has had a need arise, we've never had to put it off for wondering how to pay for it. God has always provided! And we trust that, whatever may come, He will continue to do so.

William is finally clear of all stidor sounds and wheezing! Praise be to God! He is up and around and playing again, which is comforting. However, we've noticed that he is still extremely weak and only plays for short spurts of time. He seems to have lost all skill gained over the last few months of PT and his limbs seem like jello again. Standing and walking are trying tasks that he doesn't even attempt. Even walking in his walker is complicated for him and he falls often. Crawling is his main mode of transportation, but even that has become difficult for him to manage, as his arms give way on him often and he hits his face on the floor. I am looking forward to PT tomorrow to see what his therapist thinks. Hopefully, it is just weakness from trying to recover from his 6-week bought of pneumonia and he will regain his strength quickly. We appreciate your continued prayers on his behalf.

As for me, I think I'm starting to get a little stir crazy. I'm ready for nice weather to be able to take the children out again. I'm hopeful that the Vest is going to help William with illness, but I'm not ready to test him out in the damp weather yet.


"Be not ye therefore like unto them: for your Father knoweth what things ye have need of, before ye ask Him." Matthew 6:8

"Let us therefore come boldly unto the throne of grace, that we may obtain mercy, and find grace to help in time of need." Hebrews 4:16

The Vest

The Vest is wonderful technology! We are so excited to have it for William! In two full days of use his lungs have cleared amazingly! Everytime I've listened to his lungs I have been astonished at the difference! We are very encouraged by William's new equipment and hopeful that it could mean no more hospital trips!

William sits nicely for his treatments. When he is well he will have two 20 minute treatments daily, but when he is having trouble clearing his lungs (like now) he'll have treatments each time he nebulizes (right now it's every 4 hours, daytime). He likes to read or sing - I think he really likes to hear his own voice vibrate! Sometimes he'll sit and say, "AHHHHHHHHH.....," but when someone gets the camera out, he stops.

We did catch these two videos. In this one, Abby is nebulizing him while Sarah sings with him:

In this one, Selah is helping with the nebulizer while I read to him:

I love how he "roars" for the lion! He is really listening and processing things well and his speech is even coming along!

For the LORD gives wisdom: out of His mouth comes knowledge and understanding." Proverbs 2:6

Daddy's Tough Guy

That's what his shirt says, and that's what he is! He's such a trooper!

AND HE'S HOME!!!

He's still got a long road ahead, but we are hopeful that we can manage his care here. Look for future posts with pictures of his new respiratory equipment!

"Sing unto the LORD, O ye saints of his, and give thanks at the remembrance of his holiness." Psalm 30:4

Slight Change

I don't know if William will be coming home today or not. The doctor last night felt it was fine, but the doctor this morning wants to run a CT scan to get a better look at William's lungs before he decides whether to discharge him. I'll keep posting...

By the way, William is looking and sounding much better today!

"Ye that fear the LORD, trust in the LORD: He is their help and their shield." Psalm 115:11

Doing Better

There is talk of William coming home tomorrow! He is not 100% and still sounds very raspy, but he is holding his oxygen well and they feel we can do everything at home that they are doing there, except the deep tube suctioning, which they think is a decreasing benefit.

I will be glad to have him home, but I am nervous, too. I had hoped he would be all better when we brought him home, or at least his lungs would sound clear. However, his doctor prescribed "The Vest" for him and the company will overnight it to us when William is discharged and a RT will come out to teach us how to use it shortly after we get it. Hopefully this will really help break everything up and keep his lungs clear. If you'd like to see how vest therapy works, here is a short demonstration video:

http://www.thevest.com/airway-clearance/

He has been finding ways to entertain himself, as he is now bored with his toys:

Building a mountain.....King of the hill

Calling Mommy...

"He delivers and rescues, and He works signs and wonders in heaven and in earth, who has delivered Daniel from the power of the lions." Daniel 6:27

Another Update

Today is Sydnee's birthday, but, of course, was not spent like our normal "birthday" day. Today was more difficult. I'm too tired to blog about all the details, but they made some changes in William's treatment since he was doing so well yesterday and he regressed significantly. When I arrived he was droopy, non-communative, staring into space and had been for some time. His oxygen levels were in the high 80s so Michael was blowing the oxygen through the tube. His doctor listened to his lungs, which also sounded worse, and made some changes in his treatment. He was beginning to sit up, eat, drink, and talk a little before I left. He had even greater improvement by this evening and Sarah said he was playful and energetic!

Discussing treatments and future possibilities


Feeling a little better


Playing with Daddy


Playing with Sarah


Playing with Woody


'Night-'night, Woody!

Happy birthday, Sydnee!

"Let us hold fast the profession of our faith without wavering; (for He is faithful that promised." Hebrews 10:23

Taking Inventory

I took medicine to Mike tonight and picked up Sarah. She had lots of new pictures and video for me to look at. This is one of my favorites. William does this all the time at home. He loves to line up his things and inventory them.

William is doing much better. He is actually strong enough to give a serious fight when he's being suctioned now. Also, they were able to remove the oxygen after he woke up from his nap and he's been holding his own. Sarah said that the RT (respiratory therapist) thought his lungs were sounding much better.

"Our soul waiteth for the LORD: He is our help and our shield." Psalm 33:20

Hospital Update #2

I don't know who was happier when I arrived at the hospital today: William or me. Okay, it was definitely me, but he was pretty happy, too.
Although he has made great improvements from when he first arrived, he is still pretty weak. When he sits up, his body kind of sways like he's just too weak to have any stability. His eyes are droopy, but he managed a weak smile and a perky, "Hi," when I walked in.
His oxygen levels dropped and stayed at 87 for awhile, so they've been giving him oxygen for the last 3 1/2 hours. He's still not back up in the 90s, so they're keeping the oxygen going.
Everyone at the hospital has been so very sweet and attentive. It is comforting to have him at a hospital that specializes in children. We are confident that he is receiving the best care possible and that is a tremendous relief!
Sarah is taking lots of pictures and William is staying busy with all of his new toys. The volunteers at the hospital have brought him 2 toys each day he's been there. He really likes his new "Woody" doll (you can see him cuddling with it in the 2nd picture below)!


The difference of a day:


Drawing blood is "old hat" by now:


Hanging out with Daddy:


Necessary evil: suctioning

"O LORD, I know that the way of man is not in himself: it is not in man that walketh to direct his steps." Jeremiah 10:23

Hospital Update

(picture from Thursday)

For the bloggers who didn't get my email, William was admitted to the hospital yesterday afternoon. They drew blood, took another x-ray, started an IV with fluids and 2 antibiotics, continued breathing treatments and intensive percussion treatments every 3 hours. His oxygen level was hanging out between 93-95 and they won't use an oxygen tent until it drops below 93. I think that's basically all the information from yesterday. Mike and Sarah were up at the hospital with him, as I stayed home with Calvin and the other children last night.
This morning Mike called to give me an update. William's blood work came back. He has metapneumovirus. I think it is possibly HPIV (Human Parainfluenza Virus) related, second to RSV (Respiratory Syncytial Virus). They changed one of the antibiotics from Rocephin to Cefepime, but kept everything else the same. Mike also said that his blood sugar was 220 and he's throwing keytones. What I don't know is if this is indicitive of Juvenile Diabetes coming on, or if it is a side effect of the virus. That was all the information I got and I wasn't able to ask questions because while we were on the phone, William's oxygen dropped to 81 and we got off quickly when a nurse came in.I am planning on taking Sarah back up to the hospital this morning and staying for a little while. I will be leaving Calvin here, so I will not be able to stay for long, but hopefully my questions will be answered.
Thank you all for the continued prayers, food, visits, and general assistance. Everyone has been so thoughtful and we are overwhelmed with love. I will post updates as I can.

"By this shall all men know that you are my disciples, if you have love one to another." John 13:35

The Multi Tasker

I have found that William will let me use the percussors on him longer if I let him use them on me, too. Last night he did it while he was nebulizing. What a multi-tasker! The percussors are working great! I am surprised at the amount of stuff that has come up out of his lungs. Yuck!

This morning we got William up to get him ready for PT and OMST, but he wasn't acting like himself. Mike went ahead and took him because I really thought he was just tired and would perk up. He did well through therapies and for awhile after he got back home. He went down for a nap earlier than usual, though, and when he woke up he had a high fever. The rest of the afternoon was spent like this:

or on someone's lap. Poor guy. I thought he was getting better, but now I'm wondering. Can I just say, I don't like Fridays and illness. Is it just me, or do children always get worse after office hours?

"I will both lay me down in peace, and sleep: for thou, LORD, only makest me dwell in safety." Psalm 4:8

Percussors

We found the percussors! Yeah! After spending several hours on the phone and emailing respiratory therapists off of an internet search, a very good friend of mine actually found them for me. Mike was able to pick them up last night and we've gotten started using them. William laughs at the rhythmic tapping, but he doesn't want to sit for it for the whole time. If I can at least get 5 minutes out of him, I'll be happy with that and try to work our way up.
Thank you so much for the prayers and the help. We had several emails and phone calls from friends who were looking around for us or who knew someone who might be able to help. We are so appreciative to all of you! And to Sheri, who not only found the percussors, but offered to go get them for us: you are dear to us - we love you!
Now, hopefully, we can get our little guy better!

"Now the God of hope fill you with all joy and peace in believing, that you may abound in hope, through the power of the Holy Spirit." Romans 15:13

Continuing with Pneumonia

Alright, here's the latest: we did end up taking William in to the ER on the 30th, but they did not have to admit him. They gave him another round of antibiotics and another steroid. Yesterday we took him back to his doctor for a recheck. He put William on a 3rd round of antibiotics, continued the steroid, and added an inhaled steroid, along with his regular nebulizer treatments. The good news is that William is not getting worse. The bad news is that he's not getting better, either. We can't let him continue in this weakened condition. I'm always cautious about medications and the side effects they can have and I hate for him to be on antibiotics for so long, but there is also an increased risk of complications from not being able to breathe well for an extended period of time. Next Monday we go back to his doctor for another recheck. If he's not better he will have to be admitted for a more intensive treatment.

Thank you for the continued prayers. Another prayer request: we need a respiratory percussion mallet. His doctor wrote a prescription for one, but we haven't been able to find it. We've called all of the med supply stores in this area, but nobody carries one. I'm trying hospitals and supply stores throughout the state today. Prayerfully we will be able to find one and it will help to break up the junk in his lungs.

"The LORD is my rock, and my fortress, and my deliverer; my God, my strength, in whom I will trust; my buckler, and the horn of my salvation, and my high tower." Psalm 18:2