Care Pages

Here are the journal entries we posted on our Care Page.





Posted Aug 24, 2008 12:49pm
Many of you have been keeping tabs on Reed's conditions, and we thank you all so much for yor support and prayers. We love all of the support and concern, but we are having a tough time keeping up with everyone, and going over his conditions again and again is getting a little hard. We have taken advantage of this website to try to inform everyone of Reed's status and try to help you all understand what is going on.
As a quick recap, Reed was born on Wednesday, August 20th, at 8 lbs., 4 oz and 20 inches long. He initially was having a problem keeping color, and would get pale when he stopped crying. The staff at the hospital soon moved him to the NICU. There he was treated with oxygen and set up on monitors.
Since then, he has been treated for a number of respiratory conditions, to be described in another posting. Due to the severity of his condition, he will likely be in there for several weeks. The staff at the NICU have said that he is strong and a fighter, and don't forsee him failing under the treatments they are administering, and those that are still available.Again, we want to thank you for all of your support and prayers, but ask that you bear with us. We want to respond to all of you, but haven't the time or energy at all times to get back to you right away. We will keep posts on this page to kee you all up to date, and ask for your patience and understanding.



Reed's Condition
Posted Aug 24, 2008 1:18pm
Reed has had a hard start. At birth, hospital staff noticed he was having a hard time keeping blood flow and oxygen through his body, causing him to show pale or ashy. We attempted to keep him crying and breathing heavy to keep up air movement, but after an hour or so, it showed to not be working.
He was then taken to the Neonatal Intensive Care Unit (NICU) and given an oxygen feed and hooked up to monitors. The original determination was that he had retained an amount of ambiotic fluid in his lung, causing him breathing difficulties. There was also talk of him having pneumonia.
After a day of treatment, Reed was not showing the improvements expected from the treatment he was receiving. The determination was then that it was likely he had at least pneumonia, and an IV for antibiotics was administered. The staff also started to suspect pulmonary hypertension. In essense, the blood vessels around his lungs are not transitioning from fetus to infant, and are not allowing the transfer of air between the lungs and blood. This is a very difficult condition to treat, and is what is now keeping him busy for quite a will.
The treatment he is now receiving is as follows. He is hooked up to monitors to track his heart rate, breathing rate, blood pressure, and blood oxygen level. He is heavily sedated, basically in a drug induced comma, and is breathing by means of an oscilating ventilator. He has an IV in his abdomen, and is scheduled to have a central IV installed to administer all of the medicines he is requiring at this time. He is being treated with Nitrous Oxide and blood pressure medicine, among other thngs.From here on out, we will update his condition and treatment through updates to this site. We will try to update several times a day, but bear with us, we will get to it as time



Day 5, bad night, ok morning
Posted Aug 24, 2008 1:34pm
Last night, Reed went from stable and controlled to worsening. He began to lose oxygen levels in his blood, and showed elevated carbon dioxide levels in his blood. Also, his blood pressure began to drop to dangerous levels, and required new medication to be administered. He was moved from a standard ventilator to an oscilating one, a higher level of treatment.
He has had a rough time keeping IV's and now requires a central IV to be installed. That is one that will be surgically placed in one of the veins leading to his heart. This is intended to deliver meds to his system, allowing the IV in his abdomen to deliver fluids.
After all of the changes he has gone through, he is now back to stable. But still critical. The staff is adjusting his medicine levels to get him to the right levels and hold him there. A couple blood gas reading from later this morning showed Reed in the ranges that they are looking for. The Doctor said he is likely to be in this condition the majority of this week. Hopefully he can keep the his stats where they need to be with the current treatment, allowing the staff to begin weening him off the treatments later this week and perhaps start back toward recovery.



Day 5, good day
Posted Aug 24, 2008 7:27pm
Reed has held steady through the day today (Thank God). Doctor E. walked us through the stats that they are tracking by blood gas measurements, and across the board through the day have been at least acceptable, if not good.
What we need now are prayers for 'boring'. We want probably four days of nothing. No excitement, no drastic changes, no events. As they say no news is good news, in this case, no change is good change. Doc E wants to see him hold stable for about four days before they start any reductions in any of the support.
So for the first time in all our lives, let's wish not for great changes of for more of anything, but just for things to stay the same. We will be watching the next 48 hours very closely, and the next 48 after that with great anticipation.
Thanks again for all of the wonderful wishes and prayers.





Day 6, Good Night, Good Morning
Posted Aug 25, 2008 12:11pm
Reed had a good night last night. Doctor E was on all night and did some tweaking to the treatments he was receiving and the next reading they got from him about 4 AM came in great.
This morning, he is a little low on blood, so they are giving him a transfusion. Will go into an existing IV, so he won't even know it is happening. He will probably need a couple more transfusions throughout the process, but this is just more to keep him in the right ranges.
Reed is scheduled to get his central line this afternoon. It is an IV that will go into one of the main veins in his chest, and will allow the staff to better administer his meds. Has to be surgically installed, so he may have a rough afternoon. If he can get through this one ok, which they expect, since he is heavily sedated, then we will be looking better yet.
Will update again later tonight.
I (Heather) had to add in a little something to this. Get the tissues ready. Keep in mind she has only been going to her preschool for 1 week (2 days!) and has learned this much. (She goes to a lutheran preschool) Last night I was telling her about her brother and how he had had a good day. She said "oh thats great. Mom, is Jesus with baby Reed?" I said "Yes baby girl, Jesus is with baby Reed." "Why?" (she asks "why" ALL the time) "So he can help baby Reed be strong and get all better so he can come home and be with us." "OH good!" I am crying just rewritng this. What an amazing and strong little girl we have.




Day 6, Good Day
Posted Aug 25, 2008 3:42pm
Going well still today. Blood gas readings continue to be strong, getting solid numbers. While we were there today, he got his transfusion, which should help his blood pressure and his CO2 levels. As we know now, he is still on line for getting his central line in today, just working with the surgeon's schedule. Will let you all know how that goes.





Day 6, OK Afternoon
Posted Aug 25, 2008 7:38pm
Reed received his central line late this afternoon. All went well, and when checked on the xray, the line went in right where they wanted. Reed did get a bit worked up about it, but now it is back to being quiet and boring (hope when he gets older and reads these, he doesn't get a complex by being called 'boring'.
Getting worked up about the procedure was sort of expected, so we are still getting what we want. A solid 36 hours down since he went to this amount of treatment, and he is doing as we would hope. This night will be a big one, and when he makes it through, I think we may be getting over the hump on this stage of recovery.
Thank you again for all of your support.





Day 7, Bad Morning, Good Afternoon
Posted Aug 26, 2008 5:19pm
As it has been explained to us in the supplied information from the NICU and from the Doctors and Nurses we have been working with, the process we are experiencing is very much a roller coaster. As often as there are ups, there are also downs. What we hope for is that the downs get more shallow, and the ups get more frequent. This morning was one of those low downs.
Reed experienced some rough moments this morning. Through the night, he gave Doctor B some headaches. We can't tell if he is flirting with her, or sees her as the 'babysitter', but nights that Dr. B is on watch, he decides to have his roughest points. Last night, he began having isssues keeping his blood pressure stable. This morning, he had some blood readings that showed declining conditions. After some adjustments to his treatments, they ordered an xray on his chest. The xray revealed that the ventilator was having a hard time keeping even pressure in his lungs. Reed's lungs were partially collapsed on the top halves. On the other hand, the lower half of his lungs were getting over expanded. The over expansion was causing excess pressure on his heart was contributing to his blood pressure problems, and also to his heart rate. The trick is to keep the pressue of the ventilator high enough to keep his lungs inflated, but low enough not to overextend the lungs or put undue pressure on his heart.
What Doctor B. determined is that he needed to be repositioned to allow the ventilator to more evenly inflate the lungs. The plan was to move him to his stomach (which he was comfortable with earlier in the week). The problem is, he doesn't like being messed with (he is a bit fussy), and they were concerned about his vitals once he was moved. The little guy is very sensitive, getting stressed even by the noise in the hall or overhead lights in his room.
Thankfully, we moved on to a good afternoon. We were both there when they made the flip to his stomach, which was very tense and brought three staff into the room in order to complete. A little hard to watch, as everytime they have to detach and reattach a monitor, alarms start going off. Well, after all was said and done, they got him into a good position, and no serious concerns came about. He made the flip well, and stabilized from the move quickly. The next set of samples the staff took, the numbers were all very good, and we left feeling he was in a good condition. They were happy enough with the numbers that the next draw is not scheduled until 10 pm.


Day 7, Good Night
Posted Aug 26, 2008 6:57am
Reed had another good night, no excitement. Doctor B did a bit more tweaking of his treatments to continue improving his blood numbers. He was a bit off last night due to the excitement of having the line put in, but stabilized again by the next reading.
As sedated as he is, he continues to try to move. He brought his hand to his face last night, and they had to touch up the sedation medicine. Don't think he is going to ever give up, which is good, as determined as Mom and Dad.





On another note...
Posted Aug 26, 2008 5:29pm
We have a stubborn, determined little man on our hands. I think the next thing the staff is going to need is an elephant tranquilizer.
Reed is currently on two different sedatives. The little man should be laying there like a rag doll, and yet that is not the case. When the staff flipped Reed over, he lay there on his belly (fully sedated still), and started to move his hands and butt. Appearantly, he feels he must see what is going on, and stay part of the party. Last night, he even opened his eyes and looked around to see what was going on (of course, Dr. Burns was on at the time). We have had to give him a couple heart to heart talks on the concept of calming down and quit fighting the sedation, he needs his rest to get better......I have a feeling this conversation will need to be repeated often during his childhood.



Day 8, Great Night! (Cautiously)
Posted Aug 27, 2008 9:07am
Reed is really starting to take some positive steps. His numbers and vitals held very well last night. The original plan through the night was to hold steady and make no changes, and allow him to heal on his belly. He did well enough last night that they were able to begin notching down the ventilator, which is the first part in the process of bringing him back down from treatment. We called in this morning, and after a couple notches relieved on the ventilator, Reed is still holding strong, and looking in good shape.
I say all this guardedly, keeping in mind the roller coaster. It has had great highs and terrible lows, and we need to keep in mind we may still be in for another low. That being said, every good report sets in mind that he may truly be on the final road to full recovery.
As a reminder, full recovery still may take a while. The doctors have told us that working him back down from treatments may take several days, and that even when he comes off the equipment, he may take up to a week to naturally stabilize his breathing rate to where he can be back in a normal range. After that, he will require a few days of observation while feeding to see if he can swallow and breath concurrently without generating any problems.
Final note, they may be giving up on the sedation. The little man was given a dose of sedative this morning, and just over half an hour later, he was moving again! They are going to start allowing his movement, so long as he cannot affect his treatments. I have a feeling it is going to be pretty tough to keep this boy in a car seat!




Day 8, Good Morning, Afternoon
Posted Aug 27, 2008 6:27pm
Reed has kept pretty stable today. He has been flipped like a sunbather several times, and has not had any problems. The ventilator was adjusted down, and then back up, so he is still reliant on that, but this was expected. He is still on 100% oxygen, though they may be able to start bringing that down slowly should he hold good for another 24 hours or so.
He has been started back on 'solid' food. Reed has a tube through his mouth to his tummy, and the fed him twice today without any problems. He also took his last dose of antibiotics today.
All in all, a pretty good day. His vitals have not been perfect through the afternoon, but he hasn't been bad either. There is still a chance to ride down another dip on the roller coaster, but for now, we have at least hit a plateau.
We did get to see him moving around today, his arms and legs just fidgeting about. He does look better than he has in quite a while, so our hopes are high, if only guarded.
Thank you again, everyone, for your prayers and well wishes. Every bit helps, and it is wonderful to see how much support and love we are receiving in this enourmously difficult time.




Day 9, Good Night
Posted Aug 28, 2008 8:05am
Actually, not a lot to say this morning (keep in mind this is a good thing). He went through the night pretty uneventfully, just keeping pace. He is still having a bit of a tough time keeping his blood pressure steady, but not into bad territory. He no longer stresses out over being moved, which is good.
They did another chest xray this morning, and things looked better than last time. He is still showing a portion of his right upper lung collapsed, so they are going to try moving him to a different position, and see if they can get that to clear.
Otherwise, on to another day...



Day 9, OK morning, Good Day
Posted Aug 28, 2008 11:59am
Reed is still holding steady for the most part. He is still having a bit of an issue keeping his blood pressure up and is PO2 up, which I believe is related to his oxygen saturation in his blood. Until he can keep these under control without the help of medicines and increased oxygen feed, they can't start weaning him off of oxygen.
Heather spoke to Doctor B today, to get a realistic timeline of what they are now expecting his recovery time to be. At a best estimation, and barring any drastic changes in his conditions, she felt it would be likely Reed could still be in the hospital 3-6 more weeks. This may change on any given day, but due to some of the conditions of treatment he is experiencing, there will be some normalizing and relearning he will have to do to get himself in condition to go home. We can only hope for the shorter timeline to come to pass, as the back and forth to and from the hospital is beginning to wear on the family.
On a better note, Reed's blood numbers this midday came through very well. His blood pressure is holding well, and his PO2 reading was well into the good range for what the doctors are wanting to see. Let's just hope he can hold that so we can move to the next stage of recovery.



Not a "normal" update
Posted Aug 28, 2008 3:54pm
We can't thank every one enough for all that you have been doing. From meals, gifts, thoughts, prayers and emails to check on us. As I was sitting in his room today...and still am I thought of all of the emails and responses that are asking how we are doing and I have not really responded. Today I am able to do that.How we are doing really is determined on how Reed is. Yesterday and today have been good days so we are doing well. Now Saturday and Monday I really wasn't sure how I was going to make it. This whole thing sucks and it sucks really really bad.Today is day 8 and on one hand it feels like we just got started on the other I feel like we have been here forever. This journey has been nothing short of a roller coaster from hell. As Tony said the highs are high and the lows are low. Today is the first day in maybe 4 days that I was able to touch him. When I say touch I mean at all...not a finger on my baby's skin for that long. Today was great, he held my finger. I have yet to feed him, change his diaper, read him a book (cant talk to him long it gets him all worked up. I have not heard him cry since Friday or Saturday-I really can't remember and the last time I held him was maybe last Thursday-again I can't remember, same thing goes for seeing his little eyes. The days are running together and the nights seem to last forever. His room has 2 small day light windows that are frosted and one has the shade pulled, no lights can be on uless they are doing something and then they use a little bed lamp. He is a fighter and stronger than can be imagined. He has to have his sleepy meds every two hours or he comes out of them and tries to lift his head. I would continue to write more but my time here at the hospital for today is done. Now onto my have dinner and spend my evening with my other baby.



Day 10, Good Night, Good Morning
Posted Aug 29, 2008 10:22am
Sorry, little late getting this one out. We went up to the hospital last night to speak with Dr. E, as we haven't seen him in a few days, and a lot has been happening. He went through a lot of information with us, all of which I can't fit in here or recall it adequately to properly describe, so I won't. What I can say is that there seemed to be a bit more 'laying out the plan' than warning of the possibilities' this visit. He is happy with Reed's conditions and his readings, though they are all still a bit concerned about his PO2 numbers, (which he went into detail to describe. I somewhat got it, I think Heather glazed over) but everything else is looking pretty good.
As the schedule was described, we aren't weaning support yet, as we thought might be possible by last night/today, but he still looks like he is moving forward and not back. Dr. E explained that there still is a chance he may not heal quick enough to keep him away from the heavy treatment downtown, but it is not likely at this point. What they want to see now is maybe another day or two of keeping his blood gas numbers steady. We are now looking at maybe Sunday/Monday for the start of working down from treatment. That will take probably 2-4 days, at which time Reed will begin normalizing his own breathing. This, along with starting to detox from the sedation/pain drugs he has been on will likely take 7-10 days, and then he needs maybe 5-7 of getting used to eating for himself and doing so while maintaining his breathing. On an ideal schedule, he may be coming out in 2-3 weeks, so long as he does not have any hiccups.
We are figuratively holding our breaths now to see if he can keep his numbers in the right place and not have another dip. As of early this morning, he had 24 straight hours of solid numbers, and they are easing back on his sampling.
One more thing, Dr. E took a look at his last xray, and it appears that we may have been looking at pneumonia in his right lung. Just one of those freak things...



Day 10, good day
Posted Aug 29, 2008 1:56pm
Doctors suprised us today, they are starting to bring Reed down from treatments! This is a big step, and one to be taken slowly and with a high degee of monitoring, but it is a significant step. They are starting to slowly step down the oxygen supply that he is hooked to at about 1-2% an hour. He is starting at 100%, and they need to get him down to 50% while maintaining the oxygen saturation in his blood, so that is what they are watching to remain stable during the reductions. If all is well, the next he will be down into the 80's by this afternoon, and hopefully down to the 50's sometime tomorrow afternoon.Again, we take this optimistically, but catiously, since any sign that he still needs a level of support will slow/stop the process. We need to be sure he no longer requires supplied air before we bring him completely off of it. That being said, the first few drops today have shown no affect on his vitals, so we are heading in the right direction.




Day 11, Bad Night, Good Morning
Posted Aug 30, 2008 9:57am
Seems Reed was not quite ready to start coming off support. The last reduction in oxygen they were able to do was to 86%, yesterday afternoon. They had planned on holding him there through the night for him to normalize. During the night, during a position change, Reeds ventilator tube shifted, and had to be removed. The doctor was able to re-intabate him quickly and easily.
They did, however, switch Reed from the oscilating ventilator to the standard one. This was a move that was going to have to be made at some point anyway, so it is good that it was done last night and has to now been successful. They have moved his oxygen back up to 100%, to maintain during the changes.
The good morning comes in from the fact that he is responding well thus far to the standard ventilator, and that his PO2 numbers, which had dipped last night, are so far back up to where we want them. I believe we will be back on the schedule of trying to ween from the oxygen again Sunday or Monday, which is fine, so long as he stays stable to that time.
Just another day on the roller coaster, hopefully a ride that will be coming to an end sooner rather than later.


Day 11, Good Afternoon, Evening
Posted Aug 30, 2008 8:31pm
Since this mornings changes, Reed has had a solid day. Most of his day has been spent holding steady and enjoying the standard ventilator. They have continued today to see good to great numbers in his blood gas readings, and his vitals have all held steady. They have begun to work different portions of the treatments down, and he is responding well.
We are going to keep our optimism guarded, but he is definitely heading in the right direction.
Keep the prayers coming...




Day 12, Terrible Night, Rough Day
Posted Sep 1, 2008 6:28pm
Reed had a major low last night. They had to stop working down his ventilator, and during the early morning, his numbers started to plummet. They were having a hard time keeping his blood pressure stable, and they put him back on the oscilating ventilator and back up to 100% on the oxygen. The doctors and staff, in conjunction with an ECMO doctor at Riley hospital, decided it was best to move him to Riley. He did not need the procedure as of yet, but if it was going to become necessary, it would be much safer and easier to have him at Riley already, than to wait until that point to transport him and get him started.
We had a rough day. Infants that take as much support as Reed does have a hard time with transportation. A team came to the hospital to transition all of his support from his bed to the portable unit, and then took him out to the ambulance. We were advised against following, so we packed up our things, rode down and got registered. We got up to see him, and learned that he had not transported well, turning several different colors, but he bounced back well once he was hooked up at Riley.
The midday was spent talking to doctors about the risks involved with ECMO (brain damage, internal bleeding, not surviving), and watching the staff redo a dozen of his IV's and such, adding in several medications. The good news, his numbers stayed pretty steady through the day, even with all of the handling and stress.
That evening, we checked into the Ronald McDonald House (located inside the hospital). You always hear the stories of what RMH does for families, and you never think you will experience that until it happens. We got a sleeping room for the night, which turned out to be a cave with a full bed, desk, and closet. Not posh, but it was the best night's sleep we have gotten in over a week.
On to the next day.


Side Note Request
Posted Sep 1, 2008 6:40pm
We have a request for everyone. Just a bit of insight into our experience.
If we are able to catch you on the phone, please do us a favor and NOT ask how we are doing. After almost two weeks of some of the most extreme highs and lows we have ever experienced in our lives, we can no longer adequately respond to that question. We can no longer find the words to describe the most helpless, painful, scariest feelings we have ever experienced. We love all of the support and prayers, and we thank you for everyone who shown their care and concern.
Please trust that we are doing the best we can with the situation. We are working to keep a balance between keeping vigil by our sick son and keeping our 3 year old from feeling neglected and unloved. We have dropped every nonessential part of our lives and we spend every day praying that tomorrow will continue any uptick we have gained. We will have time to describe the our insights from the situation once it is all over, but for now, please believe that we are doing well, with respect to the situation (a great deal due to all of your prayers and wishes). Thank you.



Day 13, Bad Night, Morning, Good Day
Posted Sep 1, 2008 6:53pm
When we headed up stairs to check on Reed this morning, we learned he had shown another bad set of readings. When we got there, they had taken two other blood gasses since the bad reading, and the numbers had gotten better. The good news was, it seemed like the bad readings had been a fluke. The bad news was, if this were to continue to happen, or he were to have two numbers in a row of the kind, ECMO would be performed. The thinking was, even if he never truly showed the need for ECMO, the fact that he just wasn't getting better fast enough on the treatment he was receiving would mean ECMO would be recommended to keep from battering his body with the treatment he was receiving for an extended period of time.
We spent the middle of the day holding our breath...
As the day went on, Reed continued to show better numbers. He faired well through the day holding his vitals steady, though he needed some additional blood pressure medicine early, even though they continued to reduce some of his treatments as they had started late yesterday. As we have finished the day, he is holding his vitals steady at the lowest oxygen supply (86%) we have seen him on since this whole ordeal started.
Also, the little brute refuses to stay sedated. They have found a new sedative that was working well, but even at that, he began kicking like Michael Phelps in the butterfly this afternoon. Normally, he would receive a paralytic to make him stop moving and keep still to keep healing. But since we are in a place that we can move to heavier treatmens if necessary, we have been able to allow him to work through his lower points and his frustrations. End result, he kicked and fussed for about half an hour and the went to sleep, and his numbers all stayed steady throughout. Just another glimmer of hope.I am going to stay at the RMH tonight and wander up frequently to make sure he knows we are still around watching him, hoping he will not pull another dip early tomorrow morning. Maybe we can find the top of that last hill.


Day 14, (Really) Good Day
Posted Sep 2, 2008 8:48pm
Reed started the day very early (6 AM) with a good blood reading. I stayed at the hospital with him over night, and went up to check on him several times, and to make sure he behaved himself for his usually rough time of the morning. He did well.
He continued to do well through the day. The doctors decided to continue to push him by bringing his stats down throughout the day, and he responded by keeping all of his stats in the right place, and kicking and swinging all day long.
One of the drawbacks of being treated at Riley is that Reed is in a large room with a half dozen other children. When one of those other infants need an operation or are crashing, the room has to be cleared. We were kicked out of his room today for about 3-4 hours. Really stunk. But when we got back in, we came to find that they were still happy with his progress, and that they were taking Reed off of the oscilating ventilator. Big step. Should he tolerate this, he should be able to work down from the standard ventilator and head toward recovery.
We are going to hold on to our excitement for two more days. He is moving all over the place, and even breathing over the ventilators (which is a good sign), but he has to continue th progress to keep the doctors happy. So long as he keeps moving forward, ECMO gets farther and farther away. Keep the prayer coming specifically for him to transition well through the lowering of supplied gasses and the ventilator, and maybe in a few days we can be comfortable enough to finally relax.
Keep 'em coming, we MAY possibly perhaps almost be there...



Day 15, Great Day
Posted Sep 3, 2008 8:10pm
Reed is now officially two weeks old, and, aside from the price of gas, few things excite me more to see falling than levels of treatment on our little boy.
Reed has made great strides today. By the time we left him this afternoon, he was down to his last 3 notches on his nitric oxide, at 37% for oxygen, and the ventilator was being worked down toward the 20's. He is better than half way down through most of his meds, a couple gone all together. Also, he is breathing over the ventilator, lungs working well, and started to eat today (through a tube, but something is better than nothing).
We got to see him looking around quite a bit today, first time we have seen his eyes for more than a few seconds since he was born. Talking to the doctor, they are being cautious as usual, but they have been very positive today. At this time, and as long as he does not suddenly turn around, which is highly unlikely, they do not see any chance of Reed going back to needing ECMO. In fact, they have hauled away his oscilating ventilator "he won't be needing this anymore" was the comment. What a blessing it was to see that get hauled off!
As it goes, if he can keep up the pace he has been on the last two day, he will be off all treatments in the next two days. There may be a slowdown at some point, many recovering from this will slow for a day before coming off of everything, but otherwise, he will move soon to breathing on his own.
Not only have we received well wishes and prayers from all of our family and friends, but the staffs at both hospitals have been very supportive. Much of the staff from back at Clarian have called in or stopped by to see how Reed is doing, and they have all told us as soon as he is ready, they want him back up there to finish recovery. They do it all the time between these two hospitals, and it would save us a load of travel time and costs, so of course, as soon as he is well enough to travel, we will have him shipped back (not so much unlike a customer return). With a little more time, and a chance to detox and relearn to eat, Reed will finally be coming home.



Day 16, Great Day
Posted Sep 4, 2008 8:47pm
The treatments are just falling away today. He is completely off of Morphine and Nitric, he is eating twice the amount he started with at a time, his cathader is out, and I think I saw him writing in a journal today.
Heather was invited to hold him today, which she took up graciously, and then refused to give him up until her bottom ached and her lower extremities were numb. He slept the whole time, think he was more comfortable than he has been since birth.
Clarian doctors are getting greedy now. They have been calling the doctors at Riley and asking when they can get Reed back. It is possible to transfer Reed back up to Clarion which would be closer and easier for us, not to mention more comfortable for recovery for all of us. It was sketchy, because insurance will typically pay for one way trips only. Fortunately, the Riley staff did their magic, and they got us a free ride. As things continue to go well, he will be shipped back north tomorrow or Monday.
It is officially time to celebrate.



Brief Update
Posted Sep 5, 2008 10:00am
Reed will be on his way back to Clarion sometime today. Riley feels they have done all they can do for him, and the staff at Clarion is anxious to get the little man back. Don't know what time it will happen, but we will have better access to our boy for the weekend, which is wonderful to have.



Posted Sep 6, 2008 8:16am
Reed was transported to Clarion yesterday, and the staff there are really excited to have him back. Reed made the trip just fine, and he is now back in a nice quiet room.
Dr. E just happened to be in yesterday, and we went over the rest of his recovery plan with him. Basically, once Reed is completely off the ventilator, which should happen soon, he has two things to do, learn to breath and eat at the same time, and go on rehab. He has been pumped full of opiates and other sedative drugs for so long, that he actually has to go through detox. As with anyone that has been dependent on a drug for a period of time, Reed will go through withdrawl symptoms.
They will be bringing the meds down slowly to not shock his system, and between that and just training his body to breath on his own and eat using his mouth again, he will likely still be in the NICU for about two more weeks. As hard as it is going to be to get through this, it will all be much easier than the recent events, and at least we know this is the path to the end.
What Reed is going to need most now is prayers for comfort.



Big Day
Posted Sep 7, 2008 9:44pm
Reed came off of his ventilator today! It went quite well, and he is now on supplied oxygen through nose tubes. The biggest thing we are dealing with now is withdrawal from his drugs.
He is breathing pretty fast, which was expected, and that should subside once his body aclimates to breathing on its own. Should take 3-5 days to get him to a low enough breathing rate to try eating on his own. (as it is, the little beast is already eating 1.5 oz. per feeding through a tube). Seems like the boy is going to be a healthy eater.
As we mentioned before, he has been completely removed from morphine, and now, he is on his last few points of fentanyl. Reed will be worked off of fentanyl over the week, and should be off by Thursday. The poor little guy is going though withdrawals, lightly since they are slowly bringing him down. They are not too bad, the staff is keeping a close eye on him, keeping him as comfortable as possible. The tough one is going to be the last one, his favorite, verset.
On a good note, Reed has been able to be held now, which I got to do for the first time since my little boy was born. He snuggles in well, and is looking so much better now than even a couple days ago.
Oh, yeah, and now that the vent tube is out, we can actually hear him again. He has a horse little squaking cry, though his voice is getting stronger quickly. He is a fussy little man, so I have a feeling we will be hearing that squak a lot.



Getting Better Fast
Posted Sep 8, 2008 8:17pm
More big steps today. Reed has done excellent in getting his breathing under control. So much so, that they are talking about letting us try feeding him tomorrow. The rapid breathing was on the list, and it now seems it is ready to be checked off.
Moving a little more slowly on the detox. They have slowed his coming off the drugs a bit, the poor guy is showing signs of withdrawal. Not too bad, but definitely there. He loves being held, which comforts him, and there are a number of nurses that have been around him that are willing to take that duty when we are not there to help him through rehab.
Reed is no longer taking IV nutrients, just fluids and the remaining sedatives, and soon will be off fluids as things are going. Once that is gone, and when they can take down the fentanyl, he will be down to one IV. They have also began working down the oxygen, slowly getting closer to getting him off of the supplied oxygen.
One more thing, Reed got a big boy bed today. They have small cribs for use at the hospital when children no longer need the incu-bed. He no longer needs the incu-bed to keep him warm, because he now is able to wear clothes.Looking more and more like the baby boy we expected him to be almost three weeks ago.



More progress
Posted Sep 12, 2008 9:03pm
Sorry if you are all getting a bit antsy, there is getting to be less and less to report on, which we all should know, is a good thing. We are just in the long waiting period now.
Reed is moving forward slowly on his Meds. The staff is working down his fentanyl at about half a point a day. He is at two today, and if all goes well, could be off it by Tuesday. The versed still has about six reductions to make, but could be done orally once he starts eating fully on his own.
As for the feeding, he is doing better. Reed usually does about 10-30 mL on his own. The rest he still gets through the tube. They say once he really gets it, it will be like a switch, and he will just start eating on his own. Looking forward to that time.
Otherwise, he is being his goofy little self. He smiles all the time, usually when he is messing with someone while they are trying to feed him. He was grinning like crazy at his big sister when she visited today. He is awake and aware way more often now, and just sits there looking around. Big dark eyes. Just staring at you.
And then he grins again, and just breaks you loose. He is going to be fun.



Almost There
Posted Sep 15, 2008 7:45pm
Over the last couple days, Reed has just been working on eating and losing his fentanyl. We love all of our doctors, but right now, Dr. B is our favorite. She is very focused on moving Reed along through his progress and getting him ready to come home. At this point, he may be just days away.
As of tonight, Reed is off of IV fentanyl. We will see how he does tonight, and if necessary, the staff may dose him rather than reestablish the drip. But if he holds, we will be down to one sedative remaining in the IV. The doc is expecting to take the IV out completely on Wednesday.
The other one we are working on is feeding. He is moving a little slowly on that, getting at most an ounce orally before getting tired of it. Hopefully as the sedative comes off, he can sustain a bit longer. Today he was actually looking for the bottle when he got hungry. Big step, he may be figuring out where the food comes from (at least until we introduce him to McDonalds).
We have to do one more mean thing to him now before he goes home. Time for circumcision! It is either do it now, or do it later when he actually knows what is going on. Hate to put him through any more, but the docs assure us he won't miss a thing (no pun intended). That should happen Wednesday or Thursday.
All in all, going well, and there is still a chance Reed will come home some time this weekend.


A Step Back
Posted Sep 16, 2008 8:14pm
Tony usually does the updates but tonight he is staying with Reed. Last night Reed was really fussy and they could not get him to calm down and go to sleep. So they didnt call us like I mention EVERY day before I leave they upped his fentanyl (cant spell!) to 1...yes 1. This sets us back two days. Instead of just giving him an oral dose they just sent him to a 1. Now there is NO chance of Reed coming home this weekend. He has to get off the Fentanyl to get off the Verset but has to be off the Verset to be able to eat full feeds. To come home he has to be eating better than he is and be off all meds for at least 2 days with no issues. Hince the reason Tony is there tonight. One of us will be staying with Reed until he is off the drugs. We want to be there to make sure that everyone is doing exactly what they are supposed to do so we can get our baby boy home, with us, where he belongs.



Finally...
Posted Sep 20, 2008 12:09pm
First, a quick recap of the last couple days. Reed went completely off of his fentanyl on Wednesday, no concerning withdrawals, box one checked. Also on Wednesday, we got the little guy's little guy snipped. All went pretty well, though the doc mentioned that it may need to be done again at some time, due to his large sack (hilarious, aside from the fact that it may lead to a repeat performance). He made it through that just fine. Heather stayed with him that night, and aside from being a bit fussy and needing to be held most of the night, he had a good night. Heather got no sleep that night, but got to sleep in 'til noon to recover.
On Thursday morning, Reed was taken off of IV all together, taking him completely off of versed. It was great to walk in there that day and see no IV lines attached to him for the first time in four weeks. Only things he had left were the monitors and a feeding tube. He had no problems coming off of the versed, just that he was now seeing the world coherent for the first time. Box number two checked. He just sits there and stares at everything, giving awefully interesting expressions. We spoke to the doctor that day to discuss his homecoming, and we learned that the volume of food he takes orally is most important. They wanted to see him taking full meals by bottle without a feeding tube before he could leave. The last item to be covered, since the central line was taken out that afternoon.
On Friday, he was doing well with feeding, getting close to full doses on his own, and so we went back up to the hospital to take our stance with the staff and work on getting Reed out of the hospital, since all he needed to do was eat. The plan was made, that if he continued to eat full meals through the night, he would come home. All of the nurses were pulling for us, and one of his favorite night nurses, Jeanie, had him that night. Jeanie was the first one to get him eating 1.5 ounces at a time, so we were pretty confident he would be fine. She new the plan was to get him eating, and was on the plan.
Today, we called up to check on his evening, and Jeanie told us she got over 2.5 ounces in him each feeding, one feeding was a full 3. We went up to see what the doc was going to say. As we got to the unit, all the staff kept congratulating us that he was going home. We got to his room, and his nurse said he was doing great and that he just needed to show he hadn't lost any weight. We weighed him and held our breaths, and turned out he actually had gained.
After a bunch of goodbyes and a rundown on the required plan, we were escorted out the door. A bittersweet moment, since today he is one month old and we are finally taking him home, but a wonderful moment just the same. And, appropriate for a little man that had caused us so many sleepless night over the last month, he passed out and remained asleep all the way home.
Hopefully that is a sign of more times to come...



Thank You, all
Posted Sep 20, 2008 1:06pm
We want to take the opportunity to thank all of you for all of your well wishes and prayers. This whole event was the most trying times either of us have ever experience in our lives, and we couldn't have made it without all of the support we received. We still don't like to discuss it as of yet (so don't ask), but Reed made it much closer to not surviving than most of us know. It truly is a miracle that he is home with us today, and I especially want to recognize all of those who continued to pray for us and for Reed throughout this ordeal. I believe they were answered.
I will likely have to come back to this a few times to add names I have forgotten (one reason this kind of thank you is much better than a public announcement), but I would like to extend some personnal thank you's to individuals. Heather, add to as you feel, and everyone please know I do not intend to leave anyone out, it has just been an eventfully month.
We would like to thank the staff at Clarion North Hospital. Heather's doctor and good friend Dr.B, who did a wonderful job delivering Reed; Dr's B, E and S, for everything the did for us and Reed during his stay, including making sure Heather and I knew everything that was going on at all times; all of the nurses and respiratory staff that spent all of their time and energy making sure Reed had the most amazing care possible, including Shannon, Wendy, Jeanie, Sharon, Gina, Bruce, Christy, and all other staff we have missed.
We would like to thank the staff at Riley Hospital. It seems like ages ago when we were there, but the few days spent there were with the most compassionate group possible. We want to recognize Doctor A and nurse Sarah for taking Reed in his first two days there and giving him the most patient, controlled, speciallized care; Dr. T for taking us through the loooonng week of coming away from the edge and to transfer back to Clarion; and the wonderful people at the Ronald McDonald House. As I have said before, it is the most wonderful service you hope you never need.
We would like to thank our family for all of the loving support and prayers. Regardless of how we feel about each other day to day, when it matters, family is always there for you. We want to especially thank Heather's mom, Karen for staying with us throughout all of this and helping keep Bella on as regular of a schedule as possible; my Mother, Monica, for being here at the start while Heather was still in the hospital recovering from the c-section; everyone who sent the wonderful cards, flowers, and gifts, including the miracle cloth (which very well may have taken him away from the edge), and all of the prayers from all of the family and their churches, the candles lit, the offerings to the saints, and the other prayers of fast recovery.
Finally, we would like to thank all of our friends here in town and across the country. Friends like Bill & Shelley and Tom and Nanette, who offered open ended support and levity when our emotions neede a break. Like Tricia and the MOMS Group of FNE, that organized meals to be brought to us and provided other treats for us and Bella to keep our spirits up. Even Kelly, who actually came by the house and took care of our front lawn and my sister in law, Terra who cleaned our bathroom for us when we didn't have the time to take care of our own home.

Letter

Dear Family & Friends,

On August 20th our son, Reed was born with Persistent Pulmonary Hypertension. There was no way anyone would have known he would be born with this condition. Reed spent exactly one month in the NICU. At one point we had to be transported to Riley, our worse fear was becoming a reality. Reed had caught an infection and was in serious trouble. At this time he had less than a 5% chance of surviving. The Doctors told us to “prepare for the worst and pray for the best.” He made a miraculous turn for the better and we were transported back to Clarian North the following week. The month that we spent in the NICU was the worse time of our lives. Thanks to the amazing Doctors, Nurses and the countless prayers he is alive and doing amazingly well. He is truly our miracle baby.

Tony & I want to say a HUGE thank you to the team that saved our son’s life. Not only that but we really want the parents who walk into the NICU to know that someone cares, someone who is not paid to. Someone who has been behind those doors, who has had to sit down with doctors as they try their best to give you all the facts, who has had to take a deep breath when they reach the doors and an even deeper one before they see their baby that day. Someone who has cried for hours in fear of the unknown and the known that they don’t want to face. Someone who knows what it is like to not know if your baby will ever come home with you. We want the parents to have a little something that they can look back at and know someone out there cares about them and their family.

Because of our experience, Tony and I have decided to start our own Non-Profit organization to help the families and their babies. Right now we need to raise money to get the foundation legally established. Any funds that are raised beyond what is needed to become established will be used to purchase the items that the babies and their families need. Our filing fees alone are $530. We deeply appreciate any help that can be given.

If you would like to make a donation please email us at reedsrelief@gmail.com

Again, we sincerely appreciate any donations received. They are the reason our foundation is going to be successful in helping many families during their ordeal.

Sincerely,
Tony & Heather

Welcome to Reed's Relief

Hello!!

I want to give you a run down on how we are going to use this site. As most of you know we have decided to start a Non-Profit organization to provide comfort and relief to the families and children in ICU.
Due to the public nature of the Internet we are going to be removing last names and personal information. Our email address is reedsrelief@gmail.com if you would like to contact us

Also, until we are up and running this will be where all information is going to be posted! We are currently talking to a couple of companies about websites and email systems.

If you have any suggestions on fundraising or would like to host your own fundraiser for Reed's Relief please email us. Because of you our organization is going to be successful!

We are currently working on our 501 (C) (3) status. Please note that until we are "official" donations are not tax deductible.

OK...here we go!!!