Moving to the PICU

This is going to be a short update. I have had bits of conversations with Carrie this afternoon, but there is so much activity going on in their room right now it is hard to stay on the phone long.

The ICU doctor came and when he saw Toby said they needed to be moved to the ICU. Since going down there Toby's breathing became worse and he was having a lot of apnea episodes. He was put on C-PAP (which provides a constant flow of air into his nose to support his breathing). Since being put on C-PAP, he has perked up a bit and is sucking on his pacifier again.

The doctors have been doing a lot of tests on his blood and have found out that his sodium levels are low. They will start him on a saline solution. Toby will also have a PICC line put in for precautionary antibiotics. An EEG will probably be done to make sure there is no seizure activity going on that they don't know about.

This is all I know at this point. I hope to finish my conversation with Carrie when she gets a moment and then I will update the webpage again. Thank you so much for praying! It means a lot to them!

Prayers Needed - Toby not doing well

Toby needs God's intervention! Bruce just called and said things have declined in the last 24 hours! They tried to do the MRI (without sedation), but Toby was moving his head too much. The plan is to do it tomorrow under general anesthesia.

He has become very lethargic. Not moving his arms or legs and hardly keeping his eyes open. They are having trouble regulating his temperature (it has been so low the thermometer doesn't even read it). His blood pressure has been incredibly high. Last night it read 140/80. I think the nurse told us that most babies this age have a blood pressure of around 70/40. All I know is that Toby's is VERY high. Carrie and Bruce were going to consult with the neurologists again and they were also talking to a respiratory therapist when Bruce called.

We really need to lift this little guy up in prayer! I remember when Toby was born how many people were praying and things went so smoothly. When you read this update, please pray!

Vocal Cord Scope

This is Erika again (sorry if this is confusing). I visited Carrie and Toby this afternoon. While I was there they had a consult with Neurology. The neurologists want to do an MRI tomorrow to see what is going on with the "Chiari" malformtion in his brain. This malformation causes part of his brain to compress into the brain stem and spinal canal.

The Ear/Nose/Throat doctors also came and did a scope of Toby's vocal cords. They inserted a long, thin camera through his nose. This did not make him very happy! Carrie and I were able to watch his vocal cords in action. Afterwards, the doctor replayed the tape for us and explained the things we were seeing. First of all, there is some cartilage that is usually taut, but in Toby's case is swollen and flopping over his airway. The right vocal cord is not working as well as the left and when the vocal cords are supposed to be open, they close and when they are supposed to close, they sometimes open. Basically, the conclusion was that the brain malformation was putting pressure on the nerve that controls the vocal cords and swallowing. The severity of this condition fluctuates. That's why sometimes his cry sounds better and why he has trouble breathing sometimes and not others. They will just have to monitor him and make sure it doesn't get any worse. When I left they had lowered his oxygen from .2 liters to .1 and he was doing great!

The MRI tomorrow will determine if he is eligible for surgery to "decompress" his brain. The neurosurgeons do this by removing some bone from his head. Then the brain has more room and isn't pushing on the nerve. Carrie isn't sure they perform that surgery on a baby as young as Toby, but they will find out tomorrow.

Pray for wisdom as doctors discuss the options!

Believe Me Now

This is Carrie just wanting to write a quick update - I'm home, going to get some rest tonight. Toby has reflux and probably because of the spina bifida has trouble coordinating his sucking/swallowing reflex. When he eats he aspirates the milk into his lungs, which puts him at risk for infection. We have many questions for the doctor tomorrow about what this means, but so far they're treating it with the feeding tube through his nose. The good news, his oxygen level finally went up to 100%, and they were going to take him off of the extra oxygen tonight. They also think that his weak cry and loss of voice is due to the reflux affecting his vocal chords, causing them to be inflamed, etc.

Thank you for praying; it's been a rough day - feeling torn between home and the hospital. It's so hard not being able to feed Toby myself, he cries because he wants to eat and can't. Pray that he will either outgrow this problem, or be able to learn to eat by mouth again. God gave me some reassurance tonight through a song by Stephen Curtis Chapman called Believe Me Now. Here's a portion of the words.

I am the One who waved my hand and split the ocean I am the One who spoke the words and raised the dead And I've loved you long before I set the world in motion I know all the fears you're feeling now But do you remember who I am? Do you? So believe Me now; Believe it's true/I never have, I never will abandon you. And the God that I have always been, I will forever be, So believe me now I am the God Who never wastes a single hurt, that you endure; My words are true and all my promises are sure, So believe me now!

We continue to trust God! Good night.

Aspirating and a Nasal Feeding Tube

Today has been full of ups and downs. First, the swallow study was postponed until tomorrow. An Occupational Therapist came and watched Toby nurse. She felt like he was swallowing. His oxygen dropped at one point during nursing and so the OT showed Carrie what to listen for so she could let Toby rest during those times. Bruce and Carrie felt pretty comfortable leaving Toby for a few hours. Carrie was able to go home and get some rest. While at home she got a call that there was an opening for a swallow study and so Toby had been taken down to radiology. In the study they found that he was aspirating a lot of what he ate. The decision then needed to be made whether to put a nasal feeding tube in. They decided to go ahead with it.

So, in summary, Toby has a feeding tube from his nose to his stomach and he is still on oxygen. The doctors still don't know exactly what's going on and will probably do a bronchial scope to find out what his airway looks like.

Pray for Bruce as he takes a turn staying the night with Toby. Also, pray that Carrie would get a great night of rest at home. Pray for Conor and Garrett as this is hard on them as well.

Readmitted

It's Erika updating (11:46 am)
Last night Toby started having some problems when he ate. Milk would come out of his nose and at least one time he had projectile vomit. Of course the first concern is that his shunt is malfunctioning. Then this morning he was having a little trouble breathing and his cry was really weak. Carrie and Bruce decided to take Toby to the ER to get things checked out. I just got a phone call from Bruce and the doctors have ruled out problems with the shunt. Their thoughts right now are that he has a respiratory virus like RSV or bronchitis. Toby is going to be kept over night for evaluation. They will decide tomorrow what to do next. Thankfully, the doctors don't seem overly concerned, they just want to keep an eye on him.

(9:00 pm)

I just got off the phone with Carrie and so I thought I would write an update. She said Toby's RSV test came back negative. His lungs sound good, but he is still having some problems keeping his oxygen saturation numbers up and so they have put him on oxygen. Because his lungs sound good, but his cry is weak and he is obviously having trouble breathing, the doctors think there may be some swelling in his trachea.

Tomorrow Toby is scheduled to have a swallow study. If this is like the swallow study my son, Evan, had, they will feed him different consistencies and watch on a live x-ray to see how he handles them. They want to see if he aspirates any of it.

The hardest part right now for Carrie is that she is not able to feed him. The doctors want to see if his breathing gets better if he isn't nursing. He has an IV in right now to keep him hydrated.

Pray for rest for Carrie (who is staying at the hospital and not able to feed her baby) and Toby (who has to sleep at the hospital and is not getting fed)!

Peed On!

This is going to seem crazy to be rejoicing over, but Bruce and I both have been officially peed upon by our little guy. For Bruce it was in the middle of the night, and for me it was this morning. His bladder function seems to continue to improve. I am praying and hoping the doctors will give us good news, and that this improvement isn't something he might lose again. We will just continue to pray for function! :)