Back in the PICU

Toby is back in the PICU again (they moved him back there Tuesday afternoon (January 30th, 2007) after some breathing episodes he had). He's been holding his breath when he's upset, and dropping down his oxygen levels (little stinker!), and the last time he did it, the PICU doctor thinks it's possible that he aspirated a small amount of saliva and this blocked his airway causing him to drop oxygen and turn blue. They moved him back to the PICU to be able to watch him better and put him back on the C-PAP. They're also going to do a CT scan this afternoon to check the ventricles to see if his shunt is malfunctioning again. They're already talking about trying to take off the C-PAP tomorrow (Thursday). We've also been asking the question about why his sodium levels dropped in the first place a few weeks ago, and the PICU doctor thinks his shunt was already malfunctioning when we first arrived at the hospital, which would cause his electrolyte levels to be out of balance. It's possible, I remember thinking his head felt a little swollen, but not really knowing for sure what normal fontanels (or soft spots) should feel like, we just didn't know. Now we do! :) It will be up to the ENT (ear, nose, & throat) doctors to figure out what to do about his vocal cord paralysis, and swallowing difficulties. Originally they were planning on doing a video swallow study on Friday, but this may get pushed back until he improves with his breathing.

Bruce and I just want to thank so many of you - family, friends, co-workers, and complete strangers for praying for us and for Toby. Thank you for signing our guestbook also - It is so encouraging to us to read your thoughts and entries. We will continue to keep everyone udpated. - Carrie

Oxygen Levels

They tried to take Toby off of the oxygen today, and his oxygen levels dropped down, so he's back on. We're asking the questions about what needs to be done for him to come home. First of all, they want to find out why his sodium and potassium levels have been fluctuating or at least see the levels stay within a normal range. The last few days his potassium was lower than normal, but not enough to alarm doctors, and today it was back in the low end of the normal range. He's on an apnea monitor right now, and they're recording what he does and how he pauses in his breathing. From this they will decide how severe it is, and may even do a sleep study on him. After that they want to get him off of the oxygen and see if his feeding issues resolve. Not all of these things have to completely be "normal" for Toby to go home. He could go home on an apnea monitor, oxygen, and/or a feeding tube, so we wait and see what happens. We're praying all these things become normal, but if not we will be trained on how to take care of him. So we wait and pray.

Unless, YOUR Law Had Been My Delight!

Jan 27, 2007 1:22pm

Toby is now out of ICU (yeah!). He's been moved to the 3rd floor, which is the neuro floor. He seems to be less fussy, which is good. They're talking about doing another scope of his vocal cords and a swallow study next week to see if the feeding tube will still be needed after we return home.

Jan 28, 2007 5:02pm

Not much has been happening over the weekend. Toby continues to have times of fussiness and it's hard to tell if he's in pain or it's gas. He continually is being fed through his feeding tube, so we don't know if this has something to do with it. When he sleeps really deep he still pauses in his breathing (apnea), and sets the alarm off because his oxygen drops down. Then he will take a breathe and the oxygen goes right back up. He's still getting just a tiny bit of oxygen 0.1 liters. Tomorrow we will be talking to the doctors about what needs to happen to bring him home. The back and forth from hospital to home is starting to wear on Bruce and I. It's hard on the boys too - it's hard to parent in two different places. Sometimes I wonder how much more we can take, and then I remember that God is with us moment by moment. He knows, and will sustain us, and the boys too. Today I read some verses that say this:

Psalm 119:90-93 "Your faithfulness endures to all generations; You established the earth, and it abides. They continue this day according to Your ordinances, for all are Your servants. Unless your law had been my delight, I would then have perished in my affliction. I will never forget Your precepts, For by them You have given me life.

We continue to cling to the words from scripture. I continually remember the promises that God is faithful, He is with us, and is using this to bring HIM glory. He has an eternal purpose we cannot see - to draw others to HIM. I pray that we are allowing God to use us to be a witness of his grace, mercy, and unending love. He never wastes a single hurt that we endure, we can believe HIM that He will never abandon us, He is always with us.

Update on the Whole Family

Toby had a pretty good day, a little fussy probably from the surgery, but he seems to be improving. He's only on about 0.1 liters of oxygen, which is barely nothing, and half the time the nasal canula isn't even in his nose, but it's there just in case. Twice today he got so upset, he held his breathe on me and turned purple - he's an ornery kid already! :) My parents left today, and my baby sister Shauna is here for the weekend to help us out. It was hard having mom and dad leave, but we're so happy to have Shauna here too. God continues to provide this care for us and our kids. It is starting to wear on us, though. We're ready to have all of our kids home, so we can take care of them and give them what they need. On top of this both of the boys are sick - Garrett has an ear infection, and Conor is running a fever and has cold symptoms. Pray they are well before Toby comes home, and that Bruce and I don't catch what they have. I'm sure not a lot will happen this weekend at the hospital - hopefully next week we will start hearing about steps to be taken to come home. Good night!

Shunt Surgery Went Well

(This is Erika)

I wanted to let everyone know that Toby's surgery went well! His shunt was partially occluded and so it should help now that they have it working properly. He is off the ventilator and back on just the nasal canula of oxygen. Carrie said that he is still fussy, but not nearly as agitated as yesterday. Today the pacifier actually calms him down (yesterday nothing would). Carrie is hopeful that fixing the shunt will put Toby on the road to recovery. The doctors will keep an eye on him (especially his apnea) and they will probably do another swallow study before they leave.

Thank you for praying! God is definitely working!

6:19 pm 

(Carrie updating)

Toby continues to do well today. He's such a fighter - He was trying to pull out his nasal canula out of his nose, and this afternoon managed to pull the feeding tube out about 10-12 inches. The last time I spoke with Bruce, they were coming in to put it back in. They're talking about moving him to a regular floor in the morning. As he continues to improve, we pray that he can totally be breathing room air very soon. They tried to put him on room air today and for some reason he needs just a little bit of oxygen to keep his sats normal. Also, pray that his swallowing will improve to he can eat by mouth and not go home on the feeding tube. We're so thankful for the improvements he has made.

Shunt Tap and Fussy

They tapped the shunt and found some elevated pressure so tomorrow morning at 7:30 a.m. he is having a shunt revision surgery. Please pray that this will go well and relieve his irritability (he's been very irritable which is a sign of shunt malfunction). Also pray that he will be able to breathe well after extubation (taking the breathing tube out after surgery), and recover quickly. I (Carrie) am staying with him tonight and am anticipating a very long night with his fussiness, but am praying this will not be the case.

Rough Night, but Better!

Toby had a little bit of a rough night - just uncomfortable and acting like he was in pain. He's been doing well on the nasal canula with just about 1 liter of oxygen flow. He's having less apneic episodes. Right now the neurosurgeons are tapping the shunt to test for pressure. His heart rate has dropped down some to sound off the alarm, so we're not sure what that is about. Pray that he won't have any new problems, and continue to improve. We really want to bring him home. Also, if you would be willing to help us out by sitting with Toby afternoons or overnight please contact Erika Weise. 

No Tubes!

4:38pm

(This is Carrie updating)

Right now they are trying to let Toby breathe just room air. He doesn't have any tubes in - no extra oxygen helping him breathe. Please pray, pray, pray, that he will tolerate this well and not be put back on anything that will help him breathe.

10:13pm

Toby did pretty well on room air, and every once in awhile he would need just a whiff of oxygen to bring his O2 levels back up, so they put the nasal canula back in (oxygen tube) and he's on about 1 liter of flow, which isn't much. He's doing really well, and we're pleased with his progress. Boy, is he a fighter. Before they took the C-PAP off, he was trying to use both of his hands (one has IV's in it) to pull the C-PAP tubes off of his face. He was quite angry about it. He definitely seems to be more like his old self. :)

Bruce's grandmother did pass away early this morning. The Holt and Morgan families appreciate your prayers. She knew Jesus as her Lord and Savior, and He has welcomed her into heaven.

Extubation and Oxygen Levels

(This is Erika again)

Toby got his MRI last night and the results didn't really tell them anything they didn't already know. His brain wasn't compressed too badly and spinal fluid was flowing around the brain which is good.

Although the MRI went well, the night was very rough. Toby was finally extubated (the breathing tube was removed) around 2am and after that he was very agitated. A combination of coming off the anesthesia and a tube down his throat to take the air out of his stomach, made Toby irritable. Once he settled down around 4am, Carrie went back to watching his monitors. Needless to say, she didn't get much sleep!

Toby was again agitated this morning. Finally, the doctors agreed to take the tube out of his throat. They will measure his stomach to make sure it is not filling up with air. If it does, they will have to put the tube back in. Sodium levels are up at normal ranges still which is a good sign. He is back on C-PAP and a little bit of O2, but is still having a few apneic episodes.

The doctors want Toby's sodium levels to stay at normal for at least 10-14 days so that his brain has a chance to heal. I guess when his sodium levels dropped so much they said his brain was very sick. They want to see what happens after his brain has a chance to heal. If he is still having the same issues, they will inspect his shunt and make sure that is not the cause. If it isn't, the last resort will be to trach him. Of course, this is hard news to hear!

Now it is just a waiting game to see what happens. Pray, again, for strength, endurance and that God would work out all the details with Conor and Garrett's care, too!

Oxygen Dropping and Apnea

(This is Erika updating)

Toby's MRI is scheduled for 8pm tonight. Just pray for him as he is going to be put completely under and have a breathing tube put in for the procedure. Pray also for the doctors as they look at the results that they might have wisdom about the next step.

Last night, after Toby's oxygen dropped a few times, the doctors decided to put him back on C-PAP. He is also still on a bit of oxygen. While on the phone with Carrie she had to remind Toby to breathe a few times. His respirations would drop to 2 or even 0 breaths a minute. She would stroke his arm and get him to breathe again.

The warming lights are off and so far he is maintaining his body temperature. Pray that that continues. His sodium also continues to stay up. The doctors are anxious to find out why his sodium levels were down in the first place. Hopefully the MRI will be able to tell them a lot!

God is truly giving them supernatural strength right now, but at the same time I know it looks like a tunnel with no end. Please pray for continued encouragement and strength as they trust God through this journey!

CPAP - A Good Day!

Good evening. - Toby's had a good day, he continues to seem more like himself. He's been trying to lift his head up, and he gets ornery when the nurses change his diaper or give him a bath. He's been more awake and wide-eyed, especially when someone talks to him. They're trying to wean him off of the forced air pressure into his nose/airway, and his sats dropped a few times, so they bumped it back up. This is difficult for us because we just want him to be able to breathe without this extra help and come home. His sodium levels continue to be stable. They stopped giving him IV fluids, and he's now getting all of his nutrition through a continuous supply of milk! :) Tomorrow they should do the MRI. Our prayers for today are for Toby to be able breathe completely on his own, for the MRI to happen tomorrow as well as for its accuracy. They're probably going to have to put him under general anesthesia for the MRI, so pray that he tolerates that well also. One last request is for Bruce's parents, especially his mom. Bruce's grandmother (his mom's mom) is not doing well, and she was called to Texas to say her last goodbyes. This was expected, but it's obviously still difficult to say goodbye, and also to be torn in two directions (wanting to be here with Toby and then in Texas with her family). Thank you for lifting us up - God continues to give amazing peace and love. Goodnight.

Stability, but No Answers

Toby is doing pretty well today. His sodium is 134, and they are slowly increasing the amount of milk he is getting through his feeding tube. He's more awake and knowledgeable of the fact that he isn't eating by mouth, so he's more fussy, but we like it that way, because we know he's getting back to "normal". He continues to have the apnea, especially when he's getting into a deep sleep. They decided to put the MRI off until Monday because of a few reasons. They want to make sure his sodium levels are stable enough so the photos of his brain will be accurate (i.e. no swelling of his brain from low sodium). They also don't feel it's an emergency, and since it's the weekend...we wait until Monday. They began weaning him off of the oxygen and the support of forced air, and his oxygen levels dropped some, so they turned the forced air back up, but left the oxygen levels lower. The biggest requests for today are to find out what's causing the low sodium, and for his breathing to improve, so he doesn't need the forced air to breathe. Ultimately we want to take him home feeding by mouth, so that is also a request. My parents are here again helping us with the boys, and my sister was here on Friday to help. We're so thankful that all of the grandparents and aunts have been here and can be here to help us. Have a great day.

(This is Carrie updating)

Hello - Toby's sodium continues to go up, it's at 132, which is the base number of the normal range. They ran some tests on his thyroid to see if this was the cause of the sodium being low in the first place, and everything came back normal.  They're still not sure what would have caused the sodium to drop so low. Tomorrow is the MRI. I'm nervous that it's going to show some damage from possible seizures he may have had while his sodium was so low (seizures that we didn't know he was having). Please pray that his brain was not damaged from the sodium being low, which also caused his brain to swell. We're hoping the MRI will explain some more of the issues he's been having. Even though he continues to have episodes of apnea (not breathing for seconds at a time), his oxygen continues to stay up at 99%, so the breaths he is taking are deep and good, and he is oxygenating his lungs. Please pray that we can get to the bottom of what is causing his breathing problems, feeding problems, and sodium levels. Thank you to everyone for staying up to date on our little Toby, and for praying. We can feel your prayers. God continues to lift us up! :)

Sodium Levels Going Up

(This is Erika writing)

Toby is doing better today! His blood pressure is down and his sodium levels are edging up (Last night they were at 112, 135 is normal. Today they were up to 124). He was under a warming lamp and got too hot last night so they took him off and then he got too cold. The plan is to take the lights off, but bundle him up tightly and see how he does.

The apneic episodes are still a problem. He is keeping his oxygen saturation up at 100%, but he is only breathing 8 breaths a minute and sometimes Carrie has to rub his arm to get him to breathe again. He is currently off the C-PAP and just on oxygen, but Carrie thinks they put him back on since he is having the apnea.

The MRI has been rescheduled for tomorrow. The swelling in the brain has gone down, but they want to wait until it is down even more before they do an MRI. An EEG may or may not be done because they really feel like the sodium levels and the swelling were causing all his issues and not seizures.

This is all I know at this point. 

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! :)

Wet Diapers

Toby continues to have wet diapers!! :) Overall we're cathing lower volumes, so this is a good pattern too. We have to continue to cath as they're telling us that 20-50 ml is a good amount, and that's what we're finally getting...before it's been a range between 40-120 ml. Please pray that he will continue to have wet diapers and be able to empty his own bladder, so we can cath. him less and less. We probably won't know for sure if we can change the frequency of his cathing until we go to clinic on January 26th. Grandma Fabian goes home today, so we will see how we do on our own this weekend. Thankfully, Grandma Holt comes on Monday, so we won't completely fly solo for another week! 

Boys are Home and Toby's Peeing!

Today, Toby's big brothers arrived back home after spending time with Grandma and Grandpa Fabian in Michigan. Grandma is going to stay with us and help us adjust to having a new baby. Conor held Toby for the first time and just loves his little brother. Toby continues to do well. Tomorrow we will find out how much he weighs.

Toby had 3 wet diapers today!! He has not been able to wet on his own since birth. We are not exactly sure if this means anything, yet, we are trying to wait it out and see, but it is also very encouraging. I never thought I would be so excited about a wet diaper! :) So many are praying that his bladder function would return, and we are praying this also. There are a few new photos to see.

Our nights have not been too bad; we are getting some sleep. Bruce and I have a pretty good system going; He gets up to cath, goes back to bed, and then I feed Toby. Having Grandma here to get up with the other 2 boys in the morning is a blessing also. We're enjoying our time together.

Little Sleep

We're adjusting to being home with Toby. He's really a very good baby and doesn't cry unless he's hungry or uncomfortable. The biggest challenges of the last few days have been making sure we catheterize him properly, keeping him awake enough to eat, and caring for his incisions, etc. We're also trying to function without sleep. Toby likes to be held while he's sleeping in the middle of the night, so that makes it difficult for us to sleep. Thankfully the doctor said we could try cathing every 4 hours at night and every 3 hours during the day, so hopefully this will allow us to get some more rest. Bruce and I both miss Conor and Garrett. They'll be home on Monday. It's very quiet around here without them. I'm trying to appreciate that, but I think we're ready to have our family all back together again. Thankfully we do have help these next 2 weeks, so I won't be completely on my own yet. Pray that we have wisdom differentiating between normal baby behaviors and behaviors that would tell us his shunt is malfunctioning. This is one thing that has been stressful for us. Thank you for continuing to lift us up.

A Difficult Day

It's been a difficult day for me emotionally. They told us we would be going home, and the day just dragged on and on, until finally they released us at 6:00 p.m. We're also having to catheterize him more than we expected, about every 3 hours. The nerves to Toby's bladder are damaged from the Spina Bifida, therefore affecting the muscle, so his bladder gets unusually large. To keep it from being enlarged, we have to catheterize him every 3 hours. Even then, we're getting large amounts, and I just wonder how we're ever going to get any sleep. He has several doctor's appointments already scheduled also, and that is overwhelming also. I wonder how I will be able to handle these new challenges and still be there for the other two boys. God has been continually asking me today if I will trust him. I know He is in control, and will continue to hold us in His arms. We choose to continue to trust HIM for HE has a perfect plan.

Hearing Test and Learning to Cath

Today was a good day. Toby slept a lot, and had some difficulty waking up to eat, but as the day went on he improved and ate well. He failed his hearing test today, but the audiologist said that this is not uncommon in babies with mylomeningocele (spina bifida). We will just have to re-schedule another appointment in 6 weeks to have it re-tested.

Bruce and I took turns practicing performing the catheterization process. We found it isn't as intimidating as we once thought. It takes some time, about 15 minutes, since it's important for the bladder to be completely emptied. This has been good practice as they think he will be going home tomorrow! We added a few new photos today, so be sure to check them out. Good night.

Shunt Surgery

Toby is in recovery, and the surgery went very well. The have taken the breathing tube out, but they're trying to get his body temperature back to normal. The nurse said this is very common. The neurosurgeon said that he could be eating by tonight. He still has to have other tests before he is released, and Bruce and I need to be trained to catheterize him. Urodynamic testing on the bladder and a renal ultrasound will be performed to see how his bladder and bowels are functioning. We're hoping that Toby will go home some time at the end of the week or weekend. This is much earlier than we had hoped for, however we will take it one day at a time and see what happens. God has blessed us, and we continue to praise Him for the blessings on us and Toby.

Carrie is Discharged

Thank you to Erika for starting it up so friends and family could stay updated. I was discharged from Riverside Hospital yesterday, and I'm feeling pretty good. I was actually able to walk to the elevators today while seeing Toby today, instead of being wheeled up in the wheelchair! :)
Toby is doing great! His back is healing from surgery, and he's drinking bottles and nursing well when I'm there to feed him. He's such a piggy - gained 8 oz. since Saturday! :) He weighed 6 lbs. 2 oz. today.They performed the CT scan of his head this morning, and it only took about 5 minutes. He opened one eye as if to say this is comfortable, and then went back to sleep (He was wrapped in his blanket and had cotton around his head so he wouldn't move during the scan). We don't know the exact results of the scan, but tomorrow morning they are doing surgery to put the shunt in. Surgery is scheduled for about 7:30-8:00 a.m. They will insert a rubber valve (which is the shunt) into the fluid filled part of the brain, and feed it through his neck and body cavity into his stomach. As fluid builds up in the ventricles of the brain, the shunt drains the fluid down the tubing and into the abdomen. The surgery should only take an hour. Please pray for us as it will be a long day at the hospital, and for a quick recovery for Toby.We've been blessed to have my family here visiting and taking care of the house and the boys. Last night Grandma and Grandpa Holt stayed with Toby so we could celebrate a late Christmas. Today the boys left to go to Michigan with my parents, and it's been a little difficult, but we know this is the best place for the them, and for us. My sister Lynsey is staying with us this week to transport me to the hospital when needed and to take care of us. She cleaned the house today, which was a huge blessing. Bruce and I are so thankful to our parents and siblings for taking care of the boys, being with Toby when we couldn't be, and just being there through all of this.God has been so good to us. I just can't even express His goodness. Things have gone much smoother than I could have even imagined, and we are continually encouraged by everyone's prayers and the love poured out on us.