Today's plan

The lung specialist just came by. They are stopping the albuterol and making it as needed. He said he sounds amazing. He is goin to try to get everything wrapped up so we can go home this afternoon. Thank you Jesus!!!! 

More specifically

Benjamin just went the entire night without any oxygen!! Thank you Jesus!! There was someone specifically praying that his pulse-ox would not drop under 90 throughout the night. This morning a nurse practitioner came in and was talking about through the night. She said "he looked great last night. We were fine with his pulse-ox dropping into the upper 80's, but it never dropped below 90"!!! Thank you Lord for yet another answered prayer!!!! 

Doctors should be coming around soon to let me know what is next on the plan. So far everyone who has checked him today can't see us being here past tomorrow!!  Thank you Jesus! I know many were praying we would be home by the weekend! To God be the glory!!!!

A step down

We were just moved out of ICU to a regular floor!! Benjamin is completely off of oxygen for now. So far, his numbers look good. He will be monitored the next 24 hours and if oxygen doesn't have to be turned on, there isn't any reason why we can't go home this weekend!!! 

So grateful for such a fast turn around!!! God is good!!

This says it all :)

Pictures

Here are some pictures of today. 

Waking up and seeing daddy before getting tubes out

Right before extubating

With just a feeding tube and oxygen

Now, with only oxygen (and a full belly) ;) our happy boy gave us the slightest smile again tonight. 

Just looking at these pics, I am reminded just how far Jesus brought us in one day!!! Oh how grateful I am!!!!!!

One by one

Benjamin fed well for a second time this evening!! No words can describe the joy I feel, as a mother, to hold my baby in my arms once again and let him eat!! What a miracle!! 

Because he ate well, they were able to remove his feeding tube and IV!!!! One by one, he is disconnecting from machines today! He still has a central line in his upper thigh where they administer his medications, but all iv fluids have been stopped!!!

The nurse said the Dr heard what his numbers are and said if it keeps up through the night, he can most likely move to a step-down floor tomorrow sometime. They usually only keep you on one of those floors a couple days at most (as long as all things keep improving) so there may actually be an end in site!!

My heart is just overflowing at the thought of taking Benjamin home where the whole family can be together once again!! I miss Emma like crazy and can't wait to hold both of my babies in my own home again!!! The Lord has been so very merciful and gracious to us!! It is amazing to see the progress Benjamin has made in one day!! To God be all the glory, all of the honor and all of the praise!! He is so worthy of our praise and adoration! 

Thank you for all the many many prayers!!! God is working all things for our good!!

Charity

Reuniting

Mommy and are reunited nursing, all vitals looking wonderful :) How incredible.

Feeding tube

Dr is going to let him try nursing when he wakes up. If it goes well, we can take out the feeding tube. Please pray it goes well. 

Thank you

Off of vent

Thank you Jesus!!! The tubes are out. He is on low-flow oxygen for now. They will monitor him like this for now.  

It is so good to hear his cry again!!!!

Extubating today!!!

Praise The Lord!!!! The tube comes out today!!!! At noon, they will turn off all morphine and sedatives because they need him very awake for the procedure. 

Thank you Jesus!!!

Too special not to share

I want each of you to know your prayers make such a difference. I received this testimony today from someone who I shall keep anonymous as to not embarrass him. 

Last night he was reading these verses:

So too the [Holy] Spirit comes to our aid and bears us up in our weakness; for we do not know what prayer to offer nor how to offer it worthily as we ought, but the Spirit Himself goes to meet our supplication and pleads in our behalf with unspeakable yearnings and groanings too deep for utterance. And He Who searches the hearts of men knows what is in the mind of the [Holy] Spirit [what His intent is], because the Spirit intercedes and pleads [before God] in behalf of the saints according to and in harmony with God's will. We are assured and know that [God being a partner in their labor] all things work together and are [fitting into a plan] for good to and for those who love God and are called according to [His] design and purpose. (Romans 8:26-28 AMP)

Today while praying for Benjamin, he felt like the Holy Spirit said "be more specific". So he asked for the tube to be removed by Wednesday. Not too long after that, we received the report that as long as he handles everything well, the tube will be out Tues or Wed at latest!!

What an awesome God we serve!!! 

Every prayer makes a difference. Thank you to each and every one of you. We have friends fasting this week for Benjamin's healing. I get tears in my eyes each time I think of the love that has been shown to our family!!!! We are truly blessed!

Charity 

A new morning

Benjamin did very well with the changes they made in the night. They stopped his food this am, so he will be ready for extubating (removing oxygen tube) later today - if they decide to do it! 

  They just came on and made the final adjustment. If he does well on this setting, then he is ready to try on his own!! 

The doctors will come around later this morning to review his numbers and make the decision if the tube comes out today or tomorrow!! 

Thank you Jesus!

Signing off for the evening

Last report for the night. :) (unless something changes) The respiratory therapist came in tonight and was just thrilled with his numbers. We had her on Fri night and she couldn't believe the difference. The first step down will be at 12:00, then hopefully again at 8:00. They will stop feeding him at 4am so he will be ready for the Procedure if they do decide to take out the tube in the am. Good news all around this evening. So grateful!!!!!

Slowly weaning

The Doctor came by and looked at Benjamin. He was very happy with the numbers. Benjamin is still hooked up to the ventilator but it is for support right now. He has been breathing deep enough and slow enough all on his own most of the day today. 

They weaned down the pressure from 14 to 12 (not sure what all that means). They plan to go to 10 tonight and 8 tomorrow morning. If he is stable at 8, the tube can come out. They think tomorrow or Wednesday they will be able to take out the tube as long as he responds well to the changes they will be making tonight and in the morning. 

So so thankful for steps on the right direction. Our God is awesome!! 

Charity

Asthma

Just to make it clear, Benjamin does NOT have asthma. I have had several people ask me and someone said they saw it on Facebook. So, just to clarify - he only has RSV. RSV can mimic asthma in babies, so they treat him with albuterol and steroids because symptoms are the same. But he does not have asthma!! 

One day at a time...

I know many of you have been praying for Emma as well. At the Dr las week, they said she had all te symptoms of walking pneumonia. They couldn't confirm without x-rays which they wouldn't do without a parent there. They put her on an antibiotic. Last night was her second night with no fever. She sleeps more than usual still, but that isn't necessarily a bad thing :). Being more tired than usual could last a little while. but she seems to be on the mend. So very thankful for that!! 

For those of you who were praying for my mastitis, that is also much much better!!! Thank you so much for praying!

As for Benjamin, the Doctors came through this morning and said they aren't going to change a whole lot today. They will try lowering his oxygen support a little to begin the process of weaning him off of the machine. If he responds well, they will do more tomorrow. All they can do for now is try. The sputum culture they took a couple days ago was positive for something I couldn't understand - A bacteria of some sort, so they are treating with antibiotic until they have identified what that is. 

The Center of Infectious Disease was back up again today. They have not found anything that suggests he has anything other than RSV. Because he took a turn so late in the game (normally worse days are day 5-7; he was put on a vent on day 9) they were wondering if he possibly had more than one virus or bacterial infection he was fighting. We are happy and very thankful nothing else has come back positive!!! 

Unless something changes, today we just wait. They will decrease the support of the ventilator here in a half hour or so, and watch how he does today!!! 

Once again thank you to each one of you who is praying!!! We gain peace and strength from our Heavenly Father each day thanks to your faithful prayers!!!!

Charity

Rest

Three times in the last three days my 12 week old son convulsed with lips turning purple, foam bubbling from his mouth; sufficating while a tube pumped air into his lungs. Asking how or why could never justify these moment of distress. We have trespassed the point of exhaustion, mentally, physically. Yet when facing the impossible the majesty of a hand greater than our own has held us close, has spoken to us with voices that sounded like our family and friends but was so clearly His own. The perfection in how we have received what we have needed right when we needed it bears the signature of a Great Author. We are touched, consoled and strengthened. In peace we await.

Benjamin is resting with resperations around 25-35/min, the calmest we have seen him in 9 days. Resting deeply, much needed.         

- Nathaniel 

Evening report

They were able to put in an arterial line today. They went through the artery near his groin. This will make administering medications easier and if they need to draw blood, they can go through there rather than have to poke him again each time. 

His respirations are being controlled by the machine at about 35/min right now. That is better than it has looked all week. 

So thankful for the baby steps. 

This morning's x-rays showed no improvement since yesterday. But nothing was worse either. As of right now, they said he isn't getting better, but he isn't getting worse either. 

They want to continue to let him rest as see how he does. If he seems to be holding his own with breathing, they will wean him off of the ventilator back onto a high-flow oxygen. 

Once again, thank you for your continues love, support and most of all - your prayers!!! They mean so much to us!!

This blog has been up for around 48 hours now and has over 4,000 hits from 10 different countries. It is so humbling to have so many people praying for our sweet Benjamin!

He peeked open his eyes at mommy and daddy this evening for the first time since Friday. 

Breathing improved

They started him on albuterol again. Starting a steroid later today. It already has made an improvement in his breathing. 

Currently trying to get a second iv site. Running out of places to try. Going to ask dr about an arterial line. 

Thanks for all your prayers!!

Charity

Morning Alarm

10:45 AM after a quiet night. Fluid build up and bronchial spazms, nurses yelling, alarms screaming, not breathing, heart rate plummeting. "Ok, we have heartbeat again". 

Smiles

I realized today that some of you have never seen Benjamin other than the pic we posted on here. So I thought i should post a pic of his sweet smiling face :)

Our happy little man :)

So thankful for him!!!

Charity 

A Quiet Tme

The early morning hours are quiet, thankfully. The consistent hushed whir of machines is a welcome relief. With a dedicated nurse, antibiotics and (again) increased morphine he is resting better than he has all week. No fever tonight. 

- Nathaniel

The Balancing

Another coughing fit and all numbers dramatically go in the wrong direction. One minute peaceful, the next all alarms sounding. After a few minutes they get him calm, but the tension stays. Fever at 102. Now starting an antibiotic  in case of bacterial infection and drawing blood for more testing. 

- Nathaniel

Mid-day update

They added a second sedative to try to keep him more relaxed. 

Comparing x-rays from yesterday to today, you could already see an improvement in the collapsed portion of the lung. Thank The Lord for that!!

He is resting much better now, which helps mommy and daddy rest better. The coughing fits give me quite a scare each time. Alarms start going off, his heart rate goes to half the normal, sometimes less and his oxygen starts dropping. He turns red, sometimes purplish and his little back is arched as he tries to fight against everything. Rips my heart out every time. 

Daddy is so good to stay calm and talk quietly to him. He has always been a daddy's boy and even in this state, he responds to Nathaniel's voice!!

We have received many supportive messages, emails and calls; and though we can't respond to everyone, please know how much it means that you all are praying!!! God bless you for sharing our burden!!!

-Charity

Through the night

Although Benjamin is on a ventilator, his numbers are still not what they would like them to be. They wanted the machine to do the breathing for him so he could relax. However, he is still "breathing like a freight train" as one nurse put it. 

They did an x-Ray early this morning. It looks like part of his lung might possibly be collapsed. The vent prevents it from being able to collapse all the way, so that is good!

They have increased his morphine and other medicine a few times now to try to get him relaxed, but he still isn't just sleeping and breathing calmly like they would like. We shall see what the day holds. 

Thanks for the prayers!!

Charity

Quite the day

Benjamin has given us a scare a couple of times today. The first was this morning when his lungs almost stopped on us and they made the decision to intubate. 

The second was this evening. A nurse came in to turn off an alarm that was beeping due to a low battery. Thankfully, she was already in the room when suddenly Benjamin started "coughing". I put coughing in quotation marks because it is more of a silent convulsing at this point. Benjamin is strapped down to the bed to keep him from pulling out his tubes. The tube blocks any noise from coming out, so when he starts coughing, he just starts turning red and his little body starts jerking.

   When this started, his oxygen dropped from 98% to 17% in less than 30 seconds and his heart rate just started dropping. Luckily the nurse had entered to turn off the battery alarm, so she could intervene quickly - hand pumping some oxygen into him until numbers returned to normal. They have upped his doses of medicine to keep him more sedated and relaxed. 

    They did start feeding him. A very slow drip - 5 ml/hr (less than an ounce over 4 hrs) but at least he is eating!! As long as he responds well, they will be able to stop the IV fluids. 

As of right now, the plan is to let him rest as much as possible for the weekend, letting machines do most of the "work" for him!!! 

Thank you all so much for your prayers!! They are what is carrying us through. 

-Charity

Resting

One Week with RSV

     On Thursday, January 16, 2014 Benjamin seemed to get a little stuffy nose, by the following evening of the 17th he was admitted to ER after having difficulty breathing, stomach expanding and ribs contracting. He tested positive for RSV, a respiratory infection fatal in 500 out of 120,000 children under 3 months of age annually. He was placed on oxygen and a monitor and we were told all we could do was wait. 

     After a sleepless weekend of struggling to keep his oxygen level up with very rapid breathing he was transported to a larger facility with an ICU for infants. Both Charity and I were already exhausted and becoming ill from lack of sleep and the stress of constant tension. We asked for help from family and what a Godsend. 

    Upon arriving in ICU Benjamin was placed on high flow oxygen, monitored closed and some fluid removed. As he began to improve Emma, already with a persistent cough, began to have a fever. A 2 year old that that is not well wants her Mommy, who is not able to be with her. This is difficult. 

    Charity, not able to feed Benjamin, experienced at least 3 blockages, 1 of which turned to mastitis causing fever. Excruciating. Thankfully The Lord allowed this to pass, Charity is now feeling much better 

     Last night Benjamin (the night of Thursday, January 23), after improving all day yesterday, came close to lung failure. To avoid crisis an intubator and feeding tube was inserted and he is sedated to avoid coughing or fighting the tubes. Several times today he has coughed up fluid and began choking, with alarms going off and a little body arching to fight for breath the moments have been....difficult. 

    Also, last night our Emma had a fever of 102 and ear infections and cried for much of the night. Thankfully we were able to get her to see a doctor today. She is going through a very difficult time and Mommy and Daddy cannot be there for her as we would expect to be. She is cared for as well, but the separation, as we spend much time at the hospital, is as difficult for our family as the illness. 

     On the way back from the dr.'s office the window to the car froze open in the 15 degree weather, requiring a drive with Emma wrapped in blankets. Upon returning to the house the door would not open, requiring an hour wait in the car before help arrived.

    We are thankful for the little things as the big things seem so large. There is much more to the story but the telling of it is not necessary, we are simply look toward deliverance, praying that God would give us the strength each minute. Your encouragement and prayers have been such a blessing, and your prayers are a special gift. 

     

- Nathaniel

     

    

Please refer to this blog for updates

We greatly appreciate the love, prayers and support we have been receiving from so many wonderful people during this difficult time. Please refer to this blog for information and updates to simplify our efforts to stay in touch. 

Thank you, 

Nathaniel & Charity Sias