Long Talk With Pulmonary

The pulmonologists did a comprehensive review of Toby's history today. They feel that he should be on the ventilator at all times. Their concern is that he isn't stable enough to maintain his breathing, and then just normal things like growth while switching back and forth between the ventilator and the mist collar. The one doctor mentioned that he has really sporadic breathing and sometimes is only taking shallow breaths. A chest x-ray today showed that his lungs aren't getting a full volume of air, which can put him at risk for pneumonia. She asked what would happen if he got a cold. They don't want him so close to the edge that a cold would put his health at great risk. They believe full time ventilator support is the best option. They also decided to put his food into his intestine to further take away the risk of aspirating into his lungs. The sleep study results came back and basically didn't explain anything we didn't already know. It was difficult to hear this from the doctors, but I understand and am confident this is the right thing. We don't want to bring Toby home and end up right back in the hospital. Honestly I was there all day and switching back and forth from mist collar to vent and back again was annoying. I would rock him to sleep and then have to put him right back into bed to get the ventilator hooked up again. Having some consistency will be good for him and for us as we make plans to bring him home. I don't want to be on edge constantly to see if he's breathing. That would be very stressful. God is good, and will continue to provide all we need to take care of him.

Blue Episode - Giving us a Scare

Last night was a rough night. We got a phone call at 2 a.m. that Toby had de-statted and turned blue. The nurse was suctioning out his trach, and he was pretty upset. The doctors think he made have had an episode of central apnea, where his brain didn't tell him to breathe, because nothing was blocking his airway. Afterwards he was still struggling so they put him on a ventilator. As of this morning, the ventilator is not breathing for him, but he's receiving the Constant Positive Air Pressure through his trach (or CPAP). He also had some apneic episodes this morning, and so if he waits to breathe longer than 8 seconds the ventilator will give him a breath. (The machine can be set to a ventilator or a CPAP setting). They're wondering if the apnea might be from the results of having surgery yesterday and the anesthesia still wearing off. Toby gave Bruce's mom quite a scare, and I came right away down to the hospital to find out what had happened. They are going to start his food slowly today, into his stomach. It was a rough evening, especially for Lon Nell. Sometimes I wonder how much more we can take. It seems just when things start to look good, he has an episode that sets him backwards. We continue to trust the Lord that He is in control. He continues to ask, "Do you trust me?" I do, Lord, I do. Help me to trust every moment.

Discouraged at the Slow Pace

Toby was off of the oxygen last night for about 6 hours, and did pretty well. They ended up putting him back on the oxygen after a few times where he dropped his oxygen levels. This was during a very deep sleep where he had some periods of pausing in his breathing. He is looking quite swollen in his face today, and has been extremely restless. He's also having a very gassy stomach, which we can't quite figure out the cause of. Please pray that we can figure out the causes of these problems - they're not major, but definitely just one more thing to deal with. I'm certainly feeling discouraged and frustrated with the slow pace of things, and the time it takes to find the right doctor to make any decision about a problem he's having. It's requiring a lot of patience! It looks like they will put his feeding tube into his stomach either Monday or Tuesday, and then next Thursday they will do the sleep study. My parents are taking the boys home with them on Sunday for at least a week, maybe two, as we start to prepare for Toby to come home. I'm overwhelmed at the equipment and room set-up we're going to need to be bring him home. We're praying we can get some type of nursing help to take care of him, so I can at least get out of the house a few hours a week. Lots of things for us to think about. God continues to ask us to trust HIM, sometimes it's even minute by minute. He reminds me that His mercies are new every morning, and His compassions fail not (Lamentations 3). Good night.

Stop Scaring Mommy - Turning Blue

Toby is doing about the same. He is on 0.2 liters of oxygen, and they have tried weaning him off of it, but every time, he drops his sats (oxygen) and doesn't do well. He seems to need just that little bit. The doctors began fortifying the milk today to help him gain weight. Last night (Sat.) he gave mommy quite a scare. He was upset and held his breathe, and then turned blue. Nurses came running in, and thankfully by this time he had started to take a breathe. It scared me, but he recovered well, and didn't do it again. His difficulty breathing seems to be due to his vocal cord paralysis, which he could grow out of, but may not be able to. It's difficult to know at this point when he might go home; it could be awhile, especially with the episodes he has. They may do a scope of his vocal cords tomorrow, and a renal ultrasound. This is an ultrasound of his kidneys, which is pretty routine for babies/kids with spina bifida - want to make sure they're not enlarged. They did decide to quit cathing him since his outputs are so great! Yeah for this! We continue to pray that his vocal cords begin working and his swallowing will be functional before we bring him home!

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

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.

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!

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.