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.

Not What We Expected

Today Toby is going to have a CT scan. They also are planning on having Toby on a ventilator while he's sleeping, and on the mist collar when he's awake. They are going to switch him to a home vent. This doesn't mean he's going home, I just think it's one similar to what he would use at home to see how he tolerates it because can be different. After they see how he does with the vent., then they will try bolus feeds again. No results yet from the sleep study, but it seems he is going to need a vent when he sleeps as a result of the apnea. I don't know if he can grow out of this or not; I need to ask, and even then they may not know either. Bruce and I practiced changing out the trach and trach ties today on a dummy. When they switch him over to the home vent they will also begin training us on that. It will probably still be at least 2 more weeks before he can come home (it might take that long to have insurance approve and supply a home ventilator). It's not what we would have wanted, but we're okay with it. God is giving us joy, and we're enjoying our sweet baby boy.

Riding the Rollercoaster

Well, we certainly are riding a rollercoaster with this precious baby of ours. Toby seemed to be doing great, and then today he had a few episodes of apnea and de-statting , so they put him back on the ventilator. They tried a bolis of milk (which means a large amount in his stomach at once), and they're not sure if he refluxed this and aspirated it to cause the breathing problems or if it's his brain not telling him to breathe. We still don't have the results from the sleep study yet. He just didn't seem like himself today, more lethargic. They are checking for bacterial infections by taking cultures of his blood, urine, and mucus from his trach. We should have those results on Monday. They are also going to go ahead and start a range of antibiotics through a central line. They tried 5 times to get an I.V. in today, and his veins blow every time. They finally got a tiny one in his head, but it won't be able to handle IV fluids and antibiotics, so that's why they are putting in a central line (a larger catheter IV through a vein in his thigh). Today I read his verse from Psalm 40:17 "But I am poor and needy; Yet the LORD thinks upon me. Your are my help and my deliverer; Do not delay, O my God." We certainly continue to pray for God to deliver our son through this.

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.

Tracheotomy

Toby got his tracheostomy this afternoon and he is recovering well. They are in the process of weaning him from the ventilator that they used during surgery. Carrie said he has a bit of an air leak around the trach and so they can hear a little of his voice (This is a blessing. Many parents are not able to hear their trached children's voice).

Thank you for all your prayers today! Continue to pray for strength and that their family might be home together again soon!

Decision for a Trach

Hi Everyone. This is Erika updating. Toby has still had episodes of desaturation (oxygen levels dropping). Yesterday he had a CT scan done and it showed no compression on his brain stem. His spinal fluid is moving very well (which is good). This means, however, that a decompression surgery would not help his breathing issues at all. Therefore, the only option right now is a tracheostomy. Because he has had quite a few episodes of turning blue, they want to put the trach in either tonight or tomorrow morning. Then the doctors will need to decide whether he is ok with just a trach or if he needs a ventilator (breathing machine) as well.

As a mother of a child with a trach and ventilator, I know how unsettling the thought of a trach can be. I also know that Toby will be a happier baby when he can breathe better! His parents will "breathe" better, too.

Thank you so much for your prayers during this time of transition. Carrie and Bruce have a lot to learn over the next few weeks, but God will give them the strength and they will do a wonderful job!