Since waking up from his coma Levi has not been moving his left leg. We have had some twitches and small movements in his foot, but nothing more than that. We have been doing range of motion with him as Pam, the physical therapist, taught us, and just rubbing and playing with his leg. I noticed earlier today a couple times that his leg was in a different position than normal, and realized he must have moved it. Just now when I changed his diaper he pulled his leg from my hand as I was playing with his toes! He bent it a couple times and moved his foot around! PRAISE GOD!!! I knew he would regain movement on that side! He did sustain some brain damage in his frontal lobes, which control motor skills, and the neurology team believed that the right side was too tight and the left side too lax. We have believed all along that the Lord has healed him and he would regain movement to all his limbs. Once the picc line was moved on his right leg the tightness and pain went away and he moves it normally now, and today we see that the left side is on the mend as well! All I can say is Thank You Jesus! WOOOHOOOO!!!! I am so excited!!!!! WISH I had gotten that on video :D
Well we have been home for a few days now and it has been so nice to sleep in our own bed and relax in our own environment! It has been a whirlwind of activity, though, with Levi's schedule of meds around the clock and getting back to the daily chores. I've had to learn again how to balance caring for a baby and getting things done around the house :) As things settle down we will post more on here, new pics and such. We have an appointment at Cardinal Glennon on Friday and will let you know how that goes. So far everything is going very well! Levi is eating well and gaining weight! He has a little double chin. LOL We are so thankful to have our little guy back home with us well on his way to recovery. He definitely is our little miracle!
We made it home yesterday afternoon. Things have been pretty hectic since we have been back. We got discharged from the hospital around 1pm. Right before we got discharged we talked a little bit to the neurological team. The doctor told us that he had a chance to look at Levi's ultrasound and it did not appear to him that Levi's ventricals where any larger than they have been. He said he did not see anything that he was concerned about. There was a small amount of confusion surrounding the discharge, but it was finally straightened out and we were out of there. Around 2:30pm we had the home nurses come out for their initial visit. We went over all the medicines to include the IV meds and how to do them. The took his vital signs, weighed him and were off. We went to church last night at 7pm to thank everyone for their prayers. Many got to see him and seemed amazed at how good he looked. We will probably keep him away from church for a while (through March) to minimize contact with the flu virus. All in all, it was a pretty hectic day.
This morning we got all his meds and feeding figured out on a daily schedule. Geez, this little guy has alot of meds still going in him. We get a 3 hr break twice through the day. Other than that, there is something to do for him almost every hour. Its going to be a long 3 weeks. LOL It is so nice to be home. Being home and doing it ALL on our own helps us realize how much we appreciated all the GREAT nurses at Cardinal Glennon hospital! They truely are the BEST!
Well the wonderful staff here at Cardinal Glennon have been working hard all day to get everything taken care of so we can be discharged tomorrow! The ultrasound of Levi's head showed that the ventricles are larger than they were, which points to more fluid, and so we will be coming over here once a week until the antibiotics are finished so the doctors can monitor that as well as his PICC line. Please pray with us that there will be no more fluid in ventricles and that they do not get larger. Even at his worst point the pressure there was normal. We are believing that the ventricles will return to normal, or at least remain as they are and not pose any problem to Levi. We have received our medical supplies and loaded the car with all the stuff we have accumulated while living here. It feels so great to be at this stage. I've dreamed about going home for so long! I had to put the feeding tube in today and couldn't get the correct placement so had to take it out and try again. I did it three times. I hope I never have to do that again!
That's all I have for updates at the moment. I hope you all have a lovely evening!
Levi is still eating all his bottles on his own. He takes all his meds by mouth. The feeding tube is out and will stay out unless we happen to need it (if he would not eat a feeding, etc) and then it would come right back out. I have to put one in today just so I know how in case I need it. Our medical supplies are being sent to the hospital today, we have received referrals for physical therapy and other programs, and all the procedures (ultrasound, etc) that needed to be done are now complete. We are ready for discharge!
This morning Levi did not eat very much, but his little belly was full of meds, one of which makes him sleepy, and he just was not interested enough in that bottle to try to wake up. lol I'm sure he will make up for it at his 12:00 feeding. He has been seizure free, and the neurologists are done seeing him at this time. We will begin follow up appointments in six weeks. He still has some pain in his leg, but it's not as much or as often as it was before they moved the PICC line. Right now he's sleeping peacefully on Daddy's lap :)
Since the PICC line dressing was changed Levi's leg has been so much better! He seems more comfortable, he moves it more and does not hold it close to his body as before. We are continuing the ibuprofen and Tylenol through the night just to be sure he isn't in pain, and then we will just use it if he needs it. Hopefully this was the cause of his pain and its now gone!
He is eating all his bottles all the time! I've been giving all his meds through his mouth today and he has done very well! In fact, he likes the taste of Tylenol. LOL The only thing that has gone through his feeding tube today is 5ml of formula that he was just too tired to get down. I'm hoping he continues doing so well and we won't have to go home with that tube!
I have sad news about Marissa, the fourteen year old waiting for a heart and kidney transplant that we were praying for. Her heart came in, but from what I understand her body rejected it and she passed away. Please pray for peace that surpasses all understanding for her family and friends. Her mom is such a strong, lovely lady! My heart goes out to her and I just pray and Jesus hold her in His Hands!
Update on some of the others we having been praying for: Allen's pneumonia is cleared up and he has gone home until his heart surgery in February. Please pray that he goes through the surgery well and makes a complete recovery! Natalie, the baby with RSV, is doing well and should be going home next week. Ben, the older boy who was in the room next to us in the PICU is doing much better! Thank you so much for praying for these children with us! We have experienced the healing power of prayer and want to pray for others as so many have prayed for us!
I met a new family the other day. A young man, Jeremiah, is across the hall from us. He has been diagnosed with cancer and the family is waiting for details. This is a beautiful family! His room was rocking with family members who were conversing, laughing, and playing together. I spoke with a lady in his family regarding prayer, and they believe much as we do. This whole family has touched my heart. It's wonderful to see people enjoy each other's company and come together in a positive way even in the midst of bad news. Please join me in praying complete healing for Jeremiah and peace and support for his family as they walk this out. Thanks for standing with us!
A beautiful snowy morning greets us today. I love to see the snow falling so softly out the window, especially when I know I don't have to go out in it! The neurologist visited this morning and I have to say his attitude was much more pleasant. He explained that although they had increased the two seizure meds on Friday because of the bit of abnormal activity on the EEG, they had not given a loading dose because Levi was not having physical seizures. He explained that without a loading dose, the level of med increases over time. With a loading dose, the med level increases in about half an hour. So Levi had his loading dose this morning. We have not seen any more signs of seizure.
Dr. Simmons has really been active in researching options to find out what is going on with Levi's leg. His leg started to swell a bit yesterday and was a bit larger today. They called in the PICC nurses to change the dressing and move the access area from his shin to his thigh. I have to say, his leg looks so much better and he seems so much more comfortable! Hopefully this will fix the problem! For the first time I feel that we may have found the solution! He is kicking his right leg and moving both of his arms more. He still doesn't move his left leg much, but yesterday I was playing with his foot and he is beginning to move it. Every day we see improvement in some area, which we find encouraging. We believe that the Lord has healed him, we just have to walk this out and work with physical therapy, etc, to do our part in helping him recover completely.
During Levi's 9:30pm feed we had a bit of a scare. I guess we should be counting our blessing since it has really been the first one in quite some time. Twenty minutes into his feeding he just stopped sucking on the bottle and started pushing back with his head. He pushe d back so hard that it lifted his entire chest up off my arms. Also during this time his eyes rolled back and to the right. I would snap my fingers in front of him, calling his name and could not get a response for about 15-20 seconds...then he would look my way and almost immediately his eyes would roll back and to the right again. We immediately paged the nurse and she saw what he was doing too. She said it looked like a seizure and she immediately called the doctors up to his room. We laid him down in his bed and about a minute or so later his little body finally relaxed and he seemed to come out of the seizure. The doctors looked him over and after the description of events was given, they agreed that it sounded like he had a seizure. One of the doctors said it may of been a "breakthrough" seizure. They put him back on 24 hr monitoring. Guess we wont be going "wireless" again for a little bit. LOL Anyway....the seizure happened around 950 or so and he has been peacefull ever since. Hopefully this was just a one time deal. I guess this was just our little wake up call saying that this isn't over yet. That we still need to rely on God to help us out. We just need to continue in prayer and petition.
His feeding tube came out for a little bit. Its back in now, but we got a few pics with no tubes......isn't he handsome :)
Loving Moga's arms and soaking up her love.
What a beautiful face.....just a little tape mark on his cheek. I still can't believe the doctors expect us to put the feeeding tube in. Moga did it first, while we held him down....the next one me or Lynn will have to "install."
It's a lovely sunny Saturday morning! We are still waiting for the results of the ultrasound for yesterday. We are really praying that this will show what is wrong with his leg, that Jesus will bring the truth to light for the doctors to see. His right leg is now smaller than the left, and he's been kicking his leg when he cries now. It's very confusing!
He is off the monitors that show his vitals during the day, so we can go for walks or take him downstairs to eat with us. It's a wonderful feeling to walk around with him! He is doing very well with his feedings, and hopefully soon the feeding tube will come out. In fact, it's out right now because they are going to show us how to put it in ourselves in case he would come home with it. They will leave it out unless he can't take his whole bottle on his own. We are getting out of here Wednesday! Yay!
I don't have too much to update at this point, but will post later. The ultrasound results should be back soon and we'll definitely share that as soon as possible.
Moga is staying with Levi today and Patrick and I are going out on a date to lunch or dinner on the Hill and some shopping :) Have a wonderful Saturday!
Levi has had several tests and things going on the last couple days! The EEG from yesterday showed some small seizure activity, so instead of weaning one of the meds they will be slightly increasing both of them. We are not seeing seizure activity in his body, so that is a good thing, and we believe that eventually he will be free of seizure activity and seizure meds.
An ultrasound of his hip was conducted a short while ago and the official results are not back yet. Please pray with us that the true cause behind his pain is brought to light so we can fix this and end the pain for him!
The audiogram performed this morning to check his hearing came back normal for both his ears! Deafness is a very common side effect of meningitis, so this is wonderful news! We knew he was hearing, but to find out that his hearing is completely normal is a miracle! Thank the Lord Jesus! They will follow up in a year and check his hearing again.
His eating is better, too. He finished an entire bottle on his own in the middle of the night, and would have finished his morning bottle but doctors kept coming in to poke on him. LOL His didn't eat too much in his last feeding because he was just plumb worn out!
Well, we were hoping to come home on Monday, but the official word is Wednesday. I was a little disappointed, but it's less than a week away and very nice to have a date to look forward to! By the time we leave we will have been here a month! Although everyone here has been wonderful it will be very nice to say goodbye to living at Cardinal Glennon!
Levi drank 47 ml for the OT Molly today, which is twice as much as he's taken before! He met and surpassed the current goal she had set for him! I think we are well on the way to getting rid of that feeding tube! Thank You Jesus! We are still hearing that we should be going home early next week, and we couldn't be more excited! Of course we'll have to stop by the PICU to say goodbye to all the wonderful staff down there! Pretty soon we will be writing our last post from the hospital. Our journey will not end there, though, and we will continue to update here regularly. In fact, Levi's aunts Misty and Shelly and Moga are planning a huge party for him in a few months so everyone who has been praying for him can come and visit him, or meet him for the first time. I will post details as I have them.
For about 4 days now I have been concerned about the pain in Levi's right leg. He keeps it drawn up and cries when either he or someone else moves it. I have expressed my concern to everyone. Thankfully yesterday I was able to correlate his crying with yawns to the movement of his leg and felt I had proof that it really hurt him. As Patrick mentioned in the last post they are giving him Tylenol and we have spoken with all doctoral teams and physical therapy. I am mostly frustrated with one of the neurologists. (Prepare yourself, I am abut to vent!) Pardon me for not accepting his explanation that it is all neurological! I am not discounting that and understand that it may be part or a lot of it, but we need a plan for pain management not just a quick diagnosis. This man walks in for a minute, takes a look at the child, and plans his entire future by what he sees in that moment. The first time he saw him Levi was still sedated and very tired and since the doctor couldn't get him to look to the left he assumed he couldn't and it was neurological. Within minutes of the doctor leaving Levi was looking to the left just fine. He makes snap judgments that tick me off and doesn't like it when I challenge him. I understand I am not a doctor but I am the mother and I spend every minute of the day with Levi and know what's going on with him. AND I may not have gone to school for half my life but that doesn't mean I'm stupid! Anyone can be a Negative Nellie but I choose not to be! I believe Jesus has completely healed him and although we might have a long road to walk down in the end all will be fine.
Thank you for the chance to vent. I'm tired and cranky and certainly not at my best today. Please pray that we can resolve this painful issue for Levi! There are a few things it could be. My deepest concern is that he is hurting and I want a plan to make that go away! I'm praying and believing that Levi, through the healing power of Jesus, will amaze this doctor as he has amazed the others. Thank you all for your prayers! I continue to pray blessings on all of you as well!
The big concern of the day is Levi's right hip. He has had his right leg pulled in close to his body for about 4-5 days. One of the doctors ordered Tylenol to be given every 4 hours. That seemed to help a little bit, but it still seems to bother him a bit. We talked to the doctors about some sort of pain management and they are going to get together with all the teams (clinical, neurological, and even physical therapist) to work on that, while they try to figure out why his leg is the way it is. Is it the PICC line, is it pain from something else, is it neurological? Everyone who comes in has a different opinion. Hopefully we can find out soon. They don't want to do an Xray because they do not want to expose him to more radiation than they have to. They have talked about doing an ultrasound to see whats going on with his hip. Other than that, they are continuing to wean him off his medicines. Seems like there is always a new issue, but we will not let that discourage us :)
The doctors are still talking about a discharge date of early next week. Hopefully we can get out of here Monday, but we will keep you all informed as we get the information.
Levi is now on a feeding schedule and doing quite well if you ask us ;) They started him on his schedule yesterday afternoon. He is giving 30 minutes to eat up to 63ml. Whatever he doesn't eat, gets put into his belly via feeding tube. Since his little belly isn't used to having food in it, the doctors said it will take a little while to "stretch" it out. His very first feeding he took about 13-14 ml on his own. This morning he took about 21ml. Hopefully he continues his improvement over the course of the day.
The doctors came in this morning and informed us that they are taking him off one of the two diuretics. The other one will take 5 more days to wean him off. They also dropped one of the three anti-seizure meds today. Oh, and one more ...... they dropped the steroid this morning also!!! They said the hormone levels where high and that indicates that his adrenal gland must be working fine.
Everything has been so positive for him over the course of the past week. The doctors actually told us that we should get a discharge date of EARLY next week (5-6days)
I was surprised to find out this afternoon that Levi has been put on a regular feeding schedule (every 3 hours) and we can feed him now! He's still on a feeding tube, but instead of a continuous feed, we are feeding him from the bottle, and then whatever remains of the bottle will be tube fed over an hour. He did great on the first bottle (that I got to feed him!) but by the end of the tube feeding he was very uncomfortable. Our nurse called in the dietitian to look at him and the thought is that he was maybe fed too quickly for this first time. His belly is not used to having food in it! The doctors have been contacted and we will wait to see if they want to change the amount, or the length, of the feedings. In the meantime, Levi has given us some lovely presents in his little diaper! lol I thought after his full day of activity and a very full belly he would take a nice nap, but he is currently enjoying watching the toys hanging over his head. Oooppps, I spoke too soon, his heavy little eyelids have finally closed and he can sleep off his big meal.
Levi has had a busy morning so far today. Couple of different doctors in to see him early this morning. He got his med around 8am. Someone came in and pulled out his stitches this morning (he was not too happy about that). They are going to pull his feeding tube up a little bit. It currently is in the upper intestines, and they are going to pull it up so the contents of the tube empty into his little stomach. He will also start speech therapy today. I get a chuckle out of a 6 week old baby in speech therapy, what are they going to teach him? How to say goo goo ga ga? Seriously though, they will work with him on a bottle. This means that two different people will work with him on bottle feeding. We still need an audiogram done before discharge and another EEG scheduled.
While I was writing this, the doctors just came in for rounds. The doctor was very upfront with us this morning about the "real" risks involved with Levi. The first was that he may have an issue with epilepsy. Another issue he may have to contend with is Cerebral Palsy. He feels that the he is concerned with Levi developing an issue with his legs, mainly his right one. After he looked at his MRI the doctor stated that his temporal lobes looked pretty good. He did take a minor hit to them, but nothing severe and he didn't seem to concerned about it. Levi does seem to have some damage to his frontal lobes which control motor functions. The doctor does see some difference from his left side to his right, but its mainly in his right leg, which he has pulled up to his body tightly.
We know that the doctors are preparing us for the "worse" case scenario. We are still standing in faith that Levi will be healed of all impairments. We are believing that once the PICC line is pulled out of his right leg, that it will loosen up and will be normal again. This is what we are praying for.
Levi in his space pod....ready to be shot into space....LOL Actually, he just got back from him MRI. He is all bundled up and immobilized. He actually seemed to like it and didnt fuss at all. I think we all laughed a bit when the nurse brought him in looking like this. The MRI room was open today, so they got him in now instead of waiting until tomorrow.
The neurological team made morning rounds just a few minutes ago. For the first time since we have been here, a doctor actually mentioned what was needed before he goes HOME! Of course, this was just the neurological team, but we got a list of things "to do". They want another MRI done (scheduled on tuesday). They want him to start taking a bottle (start working on that today around 3pm) and an audiogram. That still needs scheduled. The main concern they have right now is that is left side seems so much more relaxed than the right side. We think is just due to the arterial line being in his arm, and the central line being in his leg. We are still waiting on the clinical team to come in and do morning rounds. Hopefully we will have more information then.
We have had a good and relaxing day. Shelly and Brian came up for a visit and brought us some lasagna. Was very nice to have a home cooked meal. Shelly got to spend some quality time with her new nephew, although he didnt seem to wake up much for her. Levi has actually slept quite a bit today, only waking up a little at a time and then he dozes back off. He does seem to be using his eyes much better, along with his hands. I think he is scheduled for a MRI on Tuesday. Hopefully it shows that some of the swelling (which was low) has gone down and that the physical signs are showing progress. No matter what the outcome of the MRI, we have already seen vast improvements over the course of the past few day! We dont need pictures to see it :)
Levi has been awake a lot more today. He wakes up more often and is alert for longer periods of time. He seems to have much better control of his eyes and they are moving more in sync now and not rolling up as often. He can focus on us and on his toys.
The neurology team came in today to assess Levi. The doctor noted that Levi's eyes tended to roll up and to the right, and the left side of his body was not as responsive as the right. He asked me what I have noted, and I mentioned I believe that the lesser response on that side was due to the arterial line and central line that had been in his left arm and leg. When he finished the assessment he thought the right frontal lobe of the brain, which controls movement on the left side, had been affected by the illness. He wanted us to approach him from the left side so his eyes would be more likely to slide that way and work to strengthen his left limbs. Just after he walked out of the room Levi focused his eyes on the toy hanging over his bed, which was on the left side of him! He continued to move his eyes to the left and was doing so well that the nurse felt the doctor needed to know. I believe this is just one more thing that Jesus has healed!
Levi had a great night last night! Our nurse Kelly said that he slept very well most of the night, and had a period where he was awake and checking out his surroundings. Kelly gave him a bath and had him decked out in a fashionable airplane sleeper and swaddled in a blue blankie :) The TV was set to a cute preschool program (I'm going to have to learn all these new shows now!) for his viewing pleasure. So far this morning we have rocked together in the rocking chair and worked on range of motion and focusing on objects. He has been smiling in his sleep! He seems to be a bit more awake today. They have weaned his sedative down to almost nothing, so I expect that to be gone within the next day or so.
We have enjoyed having his previous nurses visit to see what he looks like without all his tubes and cords. Even those who haven't taken care of him directly have peeked in to look at him. Everyone is just so amazed at the transformation he has made and the speed of his recovery. We attribute it all to the healing power of Jesus! It's wonderful to be in an environment where speaking of our faith is not only tolerated, but encouraged! We were so blessed to have been sent to Cardinal Glennon! ~new pics below~
We are still in the ICU because there is no room in the TCU, but we have met 2 of Levi's new doctors. The first doctor said he wanted to come in and meet the little guy that was amazing all the doctors with his speedy recovery! We prayed that God would heal Levi and amaze all the doctors, and that is certainly what is happening!
Since the breathing tube was taken out on Wednesday night, Levi has been on oxygen set to room air (21%) and did so well with it they were able to wean him quickly and he is now free of it! The only thing he is connected to is the PICC line, which will come home with him for at least a month until he no longer needs antibiotics, and the feeding tube.
He is still very sleepy! We tried to wake him up this afternoon but he was just too comfy in Aunt Misty's arms to wake up. After she left he got really angry with us as we changed his diaper and decided to stay awake for almost an hour. This is the longest he's been awake! So everything is going very well and we continue to thank GOD for healing our little Levi!
Well we are officially on TCU status and cleared for takeoff! hahaha I remember dreaming of the day when we would walk out of the ICU! What a wonderful day it is! If the TCU floor has room we will move up there, otherwise we will stay where we are. We would REALLY like to move upstairs for a nice change of scenery. The ICU staff has been more awesome than we could have hoped, and we appreciate all the various doctors, nurses, techs, and so forth who have helped us.
Clinically, he seems to be doing great. They are still weening him off his anti-seizure meds. They are lowering the flow rate of the room air he is on and lowering his diuretic. The doctor seems amazed at the speed of his recovery, and have even stated that its not normal for most patients to come of the "serious" meds that he was on so quickly.
The Physical and Occupational Therapists have been to see Levi today, and he is doing very well. The Physical therapist worked some more on his range of motion, and the Occupation therapists worked on his eye movements, grasping items, and neck control.They did stress that he will have to have many visits with them in the future, but it seems to be starting out well.Thank you all for continuing to stand in prayer with us!
Well Levi is still doing wonderful! We've been able to hold him most of the day. The Occupational Therapist came in and worked with him. She worked his arms and legs through range of motion and showed me how to do it and popped the pacifier in his mouth. It's important for him to suck on that so he can get ready for a bottle (he's still on a feeding tube) and from what I understand sometimes they forget how to suck. Levi never did like a pacifier before but he did today! Hopefully very soon he will be using a bottle! Hopefully we will be leaving ICU tomorrow and go to the TCU! There are just no words to describe how it feels to hold him and see him getting so much better! Will continue to update.
Well, we had some internet and web site issues last night and couldnt update the page. Levi got his breathing tube pulled out yesterday evening. Since being out, his blood gases have been great. He is doing so well, that the doctors are now sounding suprised on his speedy recovery. PRAISE GOD!!
Anyway, since the breathing tube was out, our nurse let Lynn hold Levi. She got to enjoy a few hours with him in her arms......pictures to come soon.....
This morning we were the first seen by the doctors during rounds. Everything is looking great!! He is still having some slight blood pressure issues, but they think it is due to the diuretics he is on. They are going to try and space out his medication and hopefully that will solve the blood pressure dropping issue. Even so, he is doing so good, that he may possibly leave the ICU tomorrow. WOOHOO. They are talking about moving him on up to the third floor, to the transitional care unit. The road to coming home is getting closer and closer.
His arterial line was removed this morning also. Now we can hold him. In fact, as this is being written, Moga and Raven are in his room holding and loving on him. I'm sure he is loving every minute of it :)
Well it looks like they will be taking out the breathing tube today! I believe the arterial line will come out shortly after that, and it's also possible that the EEG will come off today. No sign of seizures! thank You Jesus! Once those things are gone we will be able to hold him! He is still opening his eyes a lot, and he tries to cry but of course can't because of the breathing tube. He's moving his right arm and right leg quite a bit, but the left leg is still puffy from the central line that was in it and the right arm is pretty well bound because of the arterial line. Hopefully by this evening he will look like a normal baby, no longer "wired for satellite in HD", as Uncle Dale commented. lol Levi is still on diuretics, but he looks much closer to normal and I don't think he has much farther to go with that. Everything has been very positive! We continue to thank the Lord Jesus and all our family, friends, and others who have been praying with us! When the tubes are out I will post pics and maybe some video if I can figure it out. lol May have to wait for tomorrow for video so Patrick can do it!
The doctors havent done rounds yet, so we dont have much to update on. We are still hoping that they will pull out the breathing tube today. That has been the plan, and hopefully they will stick to it. His breathing still slows down to the level of the machine though. Hopefully that doesnt concern them too much. His "puffyness" is down quite a bit. He still is retaining alot of fluids, but his skin is getting much more loose than it was before. Hopefully the poor ol baby wont have stretch marks LOL. Anyway, we will update everyone as we get more information on the very chilly morning.
After our nice warm showers this morning we walked back into Levi's room and the doctors were all there doing their rounds. The plan now is the breathing tube will be pulled out tomorrow, and if it comes out the arterial line will come out too. His EEG is showing some small abnormal bursts, but they are not considered seizures since they are only lasting about 2 seconds. He is coughing quite a bit, and everyone says that is REALLY good news. Not sure why its such good news, but everyone here is encouraged by it. They are uping his formula intake and he will be off all his IV nutrition supplements today. They are just letting them run out and will not replace them. Im sure that if he continues to do well with the seizures being kept under control, the EEG machine will be pulled off soon. By tomorrow night he might look like a normal boy again, albeit with alot of extra skin. LOL Due to his puffyness, the doctor said he will have to grow into his new oversized skin. He is loosing some of his extra "water weight" and his little cheeks actually move around a little when you touch him.
Well, not that we have seen it, lol, but our wonderful nurse Marie told us that during his bath last night Levi was finally able to heft up his puffy little eyelids. He's retaining so much water he's earned the nicknames of Stay Puff Boy and Michelin Man. He's been on a diuretic and is finally starting to lose some of his puffiness. Most or all of the antibiotics and seizure meds have been changed from IV to oral, which means we have gone from a huge tree of medicine pumps down to one or two leaves. We are hoping that his breathing tube and arterial line come out very soon (like today!) so that we can hold him and snuggle him again. Thanks to all for your past and continued prayer!
We came back from lunch and they had Levi's catheter (pee tube) removed and his central line! The central line was one of the two things that would need to be removed before we can start holding him again. We just have to wait for the breathing tube to be removed before we can hold the little guy once more!!!! They really havent given us a timeframe for the breathing tube, but if he continues at the pace he is going, I'm sure it will be in a day or two. He continues to be more and more active, but his eyes still havent opened yet. He is still pretty puffy, but his little chin has returned LOL...hopefully he will be back to his normal self soon :)
Over the course of our time here we have met other families and become friends with them. There are a few in particular that I would like to ask prayer for. We have seen how powerful standing in agreement for Levi's healing has been. I would like to extend that to these children as well. Please join us in praying for Cori's tiny daughter in the NICU; for Marissa, who needs organ transplants; for Allen, who will be undergoing heart surgery; and for Natalie, a 3 week old with RSV. All these children need prayer just as much as Levi did, and indeed still does! The love of Jesus covers us all! May these children and Levi receive complete healing, in the Name of Jesus!
Thanks to our Lord and to each and every one of you who are praying with us. We continue to pray special blessings on everyone who has said even the smallest prayer for our little guy!
Levi has had all his blood pressure medications removed. The "coma" medication still remains off. He is basically still on four different anti-siezure meds, but I believe the are weening him off those now. He is still really puffy, but the nurse told us that its pretty normal at this stage or recovery. Normal or not, its hard to see his little feet, hands and face so swollen. All of his vital signs are looking really good. He continues to twitch his eyes, he will squeeze your finger if you holding his hand, his arms and feet occationally move a little bit now, he sucks at his breathing tube, and a few of us have even seen him yawn. We are believing he will open his eyes today. I think his eyes would of opened by now if he wasnt so swollen with fluids. We havent talked to the neurologist today, but the nurse said they were only in the room for a minute or two and left. We will take no news as good news. Sounds like they saw nothing of concern :)
Our church small group (C2) was awesome last night. Thanks to everyone there for your prayers. Sometimes we forget that we are NOT the only one going through trials when we are deep in one. It really helped to take the focus off "our" trial and to remind us to continue to lift others in prayer in our time of difficutly.
To our entire church family, I wish I could thank each and everyone one of you individually. Looking back, the corporate prayer on wednesday was the turning point in Levi's health. He was pretty stable up to that point, but after our church came together and lifted him up in prayer, his health started to improve immediately. God really does answer prayers!!!! AMEN