Toby's First Virus at Home

Toby has had several desaturations in his oxygen level, and so we're suspecting some cold/infection. The doctor has put him on some antibiotics. We're doing all we can with medication and other methods to get the junk out of his lungs. It seems to be working. It's been a very busy first day with the boys here and Toby being ill. One time Toby's alarm went off and Conor said, "It's okay, mom the nurse will get it...!" Bruce's mom is here and has helped out so much - I really needed her today. The last few days have been rough. I'm not getting a lot of sleep at all. The night nurse came once, and it's going to take awhile to adjust to having someone in our house at night. She will do Mon./Wed., and we're interviewing another night nurse for Tues/Thursday on Monday evening. I am exhausted. We do NOT want to have to go back to the hospital. Pray Toby gets better quickly.

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.

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.

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.

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!

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.

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.