Conor's Eye Surgery

Conor's eye surgery went pretty well today. He was great going in - didn't cry when we left him. Afterwards he was pretty upset - screaming actually. He still hasn't opened his eyes all the way - he had wet washcloth on them right before nap time and then finally put on the sunglasses they gave him. Then he fell asleep with the glasses on and he's still sleeping. Hopefully his eyes will be feeling better soon.

Toby is doing well also. We are interviewing a day nurse and a night nurse this Friday night and Saturday afternoon, so please pray that we have wisdom if these are the nurses that will be right for us and Toby. I'm nervous about this whole process, but know that it will be okay. Carl & Erika have been a huge help in this area.

Nursing Care and Waiting

Not much to say, Toby is doing really well. The tests for calcium in his urine came back fine. He weighed 8 lbs. 8 oz. and was close to 21 inches today. Our insurance approved 16 hours a day of nursing care, so now they are trying to find the nurses. If we had our equipment and nurses we could bring him home, it's just a matter of logistics now. I guess they have 2 or 3 other patients on trachs and vents that are also going home, which "clogs the system" if you will. Some days I really want him home, and other days I feel very overwhelmed with it...having a stranger in our home, helping us with Toby....Please continue to pray that we will have good nurses that will fit in with our family and be trustworthy. "Now to him that is able to do exceedingly abundantly above all that we ask or think according to the power that worketh in us. Unto him be glory in the church by Christ Jesus throughout all ages, world without end, Amen. (Ephesians 3:20-21)

Gaining Weight

Toby continues to do well. He is growing - up to 8 lbs. 6 oz.!! :) We're mostly just waiting to get our equipment and some nursing help before we come home, so that is what is taking the most time. My grandparents arrived safely today from Michigan, and they have been such a huge help already! :) It's great to have them here.

The Boys are Home from Michigan

The boys came back yesterday (Sat), and it's good to have them home. We (my parents and the boys) went up to see Toby. It's the first time the boys have seen him since he went into the hospital Jan. 15th. I think it was very good for them. Toby continues to do well, and is getting 12 breaths through the vent, but no oxygen. They also adjusted his food so he can be off of it for 6 hours total a day. We'll divide it up into 3 hour segments (3 hours in the a.m.) and 3 hours at night. We just continue to wait for the case managers to set up a nurse coming to the house to help take care of him before we are able to go home. Some days I'm overwhelmed with the thought of bringing him home, and then I just remember again - one day at a time. God is in control, I don't have to be.

OT and PT

Toby continues to do well. His color is good, and the Occupational & Physical Therapists are impressed by his ability to move his legs and feet, and how strong his arms are. He tries to lift up his head and can grasp things with his fingers as well as follow something with this eyes. They did insert a foley catheter today to collect his urine for 24 hours. The renal (kidney) ultrasound showed some build up of calcium in his bladder, so they just want to double check it. They didn't seem overly concerned about it. I added some new photos today. He weighs about 8 pounds! :) Yeah! Oh yes, Conor's eye surgery is this Wed. Feb. 28th

Eight Pounds and Conor's Eye Surgery

Toby had a good day. They threaded the smaller tube into his jejunum (small intestine), through the g-tube (larger tube in his stomach). He seems very content on the ventilator. He's sleeping well, and I believe weighs about 8 pounds. He even had a massage today from a therapist. She even taught me some things to do to soothe him. We're learning more and more about his care, and it's going well. I feel very comfortable suctioning out his trach, and Bruce and I have both been practicing quite a bit. They continue to work on coordinating his care at home. So, we wait! :) The boys come home on Saturday, which we can't wait. We miss them very much. Conor also has eye surgery to move the muscles outwards, since he crosses them even with his glasses. It's at Children's - outpatient, but pray for him. This is my child that can't stand to have his blood pressure taken!! :) I don't think he's going to do well with no food after midnight until surgery. I know God will help all of us through that also. Have a good night!

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.

We are Out of the PICU

(This is Erika)

I just wanted to write a quick update and let everyone know that Toby has moved to a regular floor!! It is so crazy because he is in the same room as my son "lived" in for a month and a half.

The CT scan results showed that his shunt is working fine. So, thankfully, he doesn't have to go through another surgery!

He has been on his mist collar all day today and is doing well. The next time he falls asleep they will probably put him back on the ventilator so he doesn't get too tired.

Because they have to line up supplies and nursing care, it will still be a few weeks before they can go home. Moving out of the ICU is a step in the right direction!

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.

Slow Going

Toby is doing better. So far it doesn't seem like he has a bacterial infection. All of his cultures have come back normal (no growth of bacteria after 24 hours, but something could still grow, so we're waiting). They did start him back on his milk and they are weaning him from the ventilator. Hopefully Monday we will know more from the sleep study.

Update at 6:37pm

Toby is having a good day. He's still on the ventilator, but on a very low rate of 4 breaths a minute. He is being fed the full amount, so hopefully he will grow. He's been hovering just above 7 pounds, gaining some then losing some. They're planning on doing a CT scan tomorrow to ensure that his shunt is working properly. From here we just wait.

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.

Sleep Study Today

Today is the sleep study. Toby is in the sleep lab with all of these wires glued to his head! He looks pretty funny. When I left he was actually sleeping, so thank you for praying! I came home because there isn't much for me to do except watch him sleep, and a PICU nurse that we trust very much is with him, so she told me to come home and get some rest. I pray that she doesn't go crazy in there - it smells like rubber cement, and is dark! The study lasts for 6 hours! :) We won't know any results until tomorrow afternoon. I guess there's over 900 pages of data to read and sort through. That's quite a bit, so we will wait patiently for that!

Feb 15, 2007 9:08pm

Toby had a really good day - he slept great for the study. They also took him off of oxygen and put him on room air. He dropped his oxygen one time during the study, and was put back on oxygen, but then they took him back off again, and he's been off of the O2 ever since! :) I hope this means that he is on the mend.

Happy Valentine's Day From NCH

Toby had a good day yesterday and a good night last night. He slept a lot, which was good. He is off of the ventilator completely and is back on the mist collar with just a little bit of oxygen through the collar. The mist collar humidifies the air that he breathes, and is something he will have at home. They also started him back on milk. Yesterday they were giving him IV fluids and 1 ml of pedialyte over 6 hours!! The nurse said she could spit more than that, which made us all laugh. So, he's been pretty hungry, but so far he is getting his food into his stomach, so that's good! He's now getting 15 ml over an hour. They wanted to give his stomach and digestive system time to wake up from the surgery on Tuesday, so they needed to give him food slowly. Tomorrow they're doing the sleep study. We're praying he sleeps so they can actually do the study!

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.

Nursing Care and Surgery Update

He came out of surgery just fine, and is having a restful afternoon. Please pray that they will decide to feed him into his stomach, it will make life so much easier, and better for his comfort level. Also, the sleep study begins Thursday morning at 8:00 a.m. So far, Toby hasn't been great at sleeping, so pray that he will sleep well that day and be comfortable (without drugs to help), so they don't have to perform it again and prolong our hospital stay. Also, we're working with our case worker (we have one through the spina bifida/myelo clinic) to arrange nursing care of some type and the ordering of the supplies we will need. Pray that this goes smoothly, and that we will be able to have nursing help. Not only that, but we want qualified nurses that we will feel comfortable with. They will be working in our home. This is going to be very difficult for me, I'm a control freak! :) God is teaching me to let go, but I also want to have a balance.

Feeding Tube Surgery

Toby is in surgery right now to get his feeding tube directly into this stomach. Hopefully this will be his last surgery for awhile! I'm also praying that they will allow him to get his milk directly into his stomach and not into his intestine. The feeding tube is large enough, they can slide a smaller tube through it and into his intestine, so he can eat that way. I think he would be a much happier baby if he felt like he had some satisfaction from feeling full. It would also allow him to get a larger amount of food at one time instead of just a little bit continuously over 24 hours. We will see what the doctors say.

A Good Day

Toby is having a pretty good day. He's been more restful, and not so upset. The swelling has gone down in his face. They are putting in his feeding tube through his stomach tomorrow, so that will be one more surgery, and then hopefully we will be free from surgeries for awhile! Wednesday they will change his trach and put in a new one that will be tied around his neck. The current one is actually surtured TO his neck with stitches. The boys left to go to Michigan with Grandma and Grandpa today, it's going to be a lonely week (or two) without them, but it will help us out a great deal. We were forunate enough to have a lot of help this weekend sitting with Toby. We were able to be home with the boys at the same time before they left, celebrated Garrett's birthday (He turned 2 on Friday), and Bruce and I went to church together this morning. Tomorrow, Erika and I are going to go survey Toby's room and start making a list of things we will need for him to come home, as well as a room set-up that will be functional. She and her husband Carl have two boys, and their eldest Evan is 16 hours older than our Conor. Evan is trached on a ventilator, so she has been through this before, and they have been a great resource as you can imagine. We are very thankful for them, as well as ALL of our family and friends that have supported us through meals, sitting with Toby, taking care of the boys, and most importantly praying - going to the throne of grace for us, so we will find help in our time of need. God brought to mind this verse on Friday. For my God shall supply ALl your need according to His RICHES in Christ Jesus. I can't remember the reference, but we are clinging to this promise as we move forward!

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.

Day After Trach Surgery

Toby is adjusting to having the trach. He's been in some pain, so they're trying to manage it and keep him comfortable. He's off of the ventilator, and is wearing a mist collar that is hooked up to about 28% oxygen (just a tad above room air, which is 21% oxygen). The mist collar is something he will need while sleeping to humidify the air that he's breathing (our nose does this for us, I just learned). We are a little overwhelmed with the care he's going to need. They will be putting a feeding tube into his stomach sometime in the next week, and next Thursday they will do a sleep study. This is to determine if his vocal cord paralysis is more structural or related to his brain/central nervous system. If it's his brain, it's possible he would need some extra help breathing (i.e. oxygen or ventilator). We're praying that he won't go home with any oxygen or on a ventilator. Thank you for praying - It's been a rough few days. God continues to remind me to take it one day at a time. He is using Toby to touch so many lives, and for that we are thankful. I hope that he has brought you closer to a God that is sovreign and loves us so dearly. Carrie

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!

Mixed Up days and Nights

I think Toby's days and nights are mixed up, because he didn't get to sleep until 2 a.m. again. Little stinker! When he's awake during the day we're trying to read to him, play, show him toys, etc., so he will stay awake a little longer, and then hopefully sleep longer at night. He's having a great day today, though, very content - not dropping his stats. He pulled out his nasal trumpet, I think it was bothering him! :) We're hoping to meet up with the ENT doctor tonight to discuss his opinion on the vocal cord paralysis - what's causing it. We will keep everyone updated!

Scope - No change

Toby had a rough afternoon also, dropping stats and not breathing well. They did a scope and saw no change (right vocal cord is completely paralyzed, left vocal cord is intermittently paralyzed). They put a tube of sorts with a nasal trumpet through his nose to help open up his airway. He has severe retraction when he breathes, his little chest just caves in so much, and you can tell he's working hard. This may be one reason why he's not gaining weight; using all of his calories to breathe instead of grow. Tomorrow we're waiting for the main ENT doctor to review the video of the scope and get his opinion about the matter. Pray we have the wisdom to ask the right questions and find out what the next step is. We don't know if we should push for a decompression surgery when he's so young. Bruce is staying with him tonight. My parents come tomorrow to help us out with the other two boys, so that will be very helpful. Goodnight.

Rough Night

Last night was a little bit rough for Toby and Mommy. He had an upset stomach from gas, and something was bothering him, so he didn't settle down until 2 a.m., and that was with some help from a sedative. His morning was good, but around 1:00 p.m. he started dropping his oxygen levels again. The doctor thinks his airway is constricted, so they put a tube down there to open it up. His stridor (noisy breathing caused from a restricted airway) is getting worse. He now has the noise even when he's calm (in the past it could be heard mostly when he was just upset). They are going to have the ENT doctors in there this afternoon to do a scope and find out what's going on with his vocal cords and airway. We're hoping to meet with the ENT doctors, neurosurgeon, and PICU doctors soon to figure out where we go from here. Please pray that we make the right decision. I've been doing research and finding out different options we have, and it's hard to know what should happen next (i.e. should we try a decompression surgery or not). His breathing does not seem to be getting better, so we will need to figure out what to do. Thank you again for praying for us. Carrie & Bruce

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!

Feeding Tube Change

Feb 1, 2007 4:03pm

Toby had a pretty good night last night, he slept from about 11-7:30 a.m with just a few times when he became restless and needed his pacifier. I was thankful he rested so well, he's been needing some uninterrupted sleep. They're weaning him off of C-PAP today, and he seems to be doing well with it. We continue to wait.

Oh yes, I forgot to mention that his CT scan came back normal, his ventricles were completely collapsed, which means his shunt is working properly. Yeah! :)

Feb 2, 2007 11:11am

Toby had an okay evening with daddy. They ended up having to change his feeding tube because upon x-ray they found his feeding tube was actually in his esophagus, instead of the valve that goes from his stomach to his intestine. They did take him off of C-PAP last night, and he seems to be faring well, he's on 0.5 liters of oxygen now. He only weighs 7 lbs. 2 oz., so he hasn't been growing much, pray he will continue to get stronger and gain weight. The ENT doctors are talking about doing a scope of his throat and vocal cords on Monday; he will probably be in the ICU through the weekend, so they can continue to monitor what he does without the C-PAP. Oh yes, something I hadn't mentioned is that his bladder is working great. He's out-putting the same amount he's in-putting, and when they cath him once a day they're getting less than 5 ml. Yeah! We hope this continues.