The best made plans...

I had planned healthy meals. I ordered groceries. I was making mason jar salads all week with lots of yummy toppings and homemade dressings. I was going to meet my protein goals. I had planned to start PIYO. I planned yoga and gym days. My PT cleared me for a couple days of cardio a week- the bike and the elliptical. I was excited. I had a plan.  But apparently it wasn't meant to be. 

Owen had surgery on April 9. One week ago today and here I sit on the pulmonary floor of the hospital, not haven't gone home yet after a pretty intense week here. What started out as a routine VEPTR expansion turned into one of the scariest experiences we have had around surgery. 

Owen's surgery began at 3pm on that Thursday. It was late and we were tired from waiting and him not being able to eat and us not wanting to eat in front of him did not help the whole ordeal. We met with the docs and the anesthesiologist that I have issues with was the assigned attending. She and I got into it about something which was not how I needed to start surgery but I've taken care of that and she won't be out anesthesiologist again.  Already the day was pretty crappy. 

The surgery took a long time. 2 hours of positioning. Usually Owen is able to be placed on his stomach with the use of foam. Not this time. When they flipped him to his belly his lung capacity went from 120ccs to 40ccs. Surgery had to be done with him on his side. This was the first time that happened. 

Surgery took a total of 3-3 1/2 hours. I thought there might be an issue with extubatation when it took a really long time between when Dr. Campbell came and said things went well and when the nurse came to give us an update. Apparently, they were able to extubate but they needed to put a trumpet in (a small breathing tube through the nose that protects the airway) and he hadn't woke up yet. 

We were brought back to the PACU and we tried to rouse him. It took a really long time for him to flutter his eye lids. He also moved his arms a couple times. He didn't speak and he didn't really wake up. Anesthesia came and spoke to us and said he should be up. They didn't use so much that he would still be asleep. We told them this was unusual for us, by now Owen would be asking for chocolate cake. No one was worried. Except us. 

They moved us up to our room on the surgery floor at 930pm. Owen still wasn't up. We tried to wake him. His eye lids would flutter. He would move a limb.I remarked that he looked swollen to me. Everyone said positioning. We told them this was an unusual recovery. No one was worried. Fine. Nick and I went to bed. At 3:30am Owen woke up and said "mommy, I love you." I felt a ton better. Ortho stopped by at 4:30am and told us from an Ortho standpoint we could go home that day. It was 430am so I didn't argue but at 6:30am when they said the same thing, I told them he was on 3liters of oxygen and we were not going home. 

Owen slept all day Friday. He woke up a couple of times. He spoke to us a little. He might have tried to drink or eat a little. Mostly he had pain meds and slept. I pointed out that he was swollen. He woke up a little Friday afternoon and spoke a bit and then knocked out. I figured surgery was hitting him really hard and the sleep was needed to heal. I told them by now he would be chattering away. Again they asked, did we want to go home? No, I said. We need another day.

Saturday was a lot of the same. He woke up a little. He had to have scoli films and a CT scan. We gave him all his meds right before so that he would sleep through the CT scan and also to combat pain from moving around and stretching during the scoli films. He had the tests had a period of time where he was awake and seemed himself and I debated going home. But something was nagging me to stay. They asked if I wanted to go. I said no. I told Nick, when we go home we always take a little step back and I don't think a step back from where we are right now is safe. He said okay. He trusted my gut, even though both of us were dreaming of a good night sleep in our bed and a relaxing weekend at home. 

Thank you God for my gut and thank you for watching over my baby. 

The nurse let Nick sleep in the room with Owen and I. O had fallen asleep at around 6pm but I chalked that up to a big day. He had the scan and films. He talked a bunch. He managed to eat some chocolate pudding and keep it down. Eventually, Nick and I fell asleep. At 1:15 am, all of Owens alarms were going off. While on 2 liters of oxygen, Owen was desatting into the 60's. Owen wasn't breathing. He still had a heart rate but he wasn't taking breaths. 

We began frantically trying to wake him. We turned his O2 all the way up. The nurse was calling Ortho (Ortho?). Nick and I were hitting him. Wake up Owen. Wake up. Owen breathe. At some point in the next minute or two while we were yelling at him and hitting him, he began to breathe. I cannot tell you how long it went on. It could have been 3 minutes, 2, 6. I don't know. It seemed an eternity. Seconds lasted minutes. Owens breaths were labored, shallow and he had a lot of retraction his neck. It looked as though he was hiccuping to breathe. It was all wrong. 

We were still in Owens face. His eyes fluttered open but his eyes were rolled back in his head. Ortho came.  They had no idea what was going on. The nurse was on the phone. I was getting angry. I yelled at everyone. In between I would try to get Owen to talk to me about his twin. I thought Caleb could rouse him. I said "no one is doing anything. Why are you all standing around." They told me they called pediatrics. I lost it. My kid is sitting there with his one eye open and rolled back in his head, he looks brain dead or in a coma and they called pediatrics??? 

I told them I am a lawyer and a med mal lawyer and I want everyone in this room now. The nurse said she called them in the ICU and they would come when they could and I told her to call a code now. She had called for assistance but by hospital policy the level of assistance she called meant the ICU has 30 minutes to respond. This fact becomes quite interesting later. Anyway, I told them that my child stopped breathing and he looks like he is in a coma. Get the ICU or anesthesia or someone else here now. 

And she did. One minute later, 20 people were in the room. And I felt a whole lot better. 

They all began moving, checking oxygen and reflexes. Looking in his eyes. Talk t to him and us. They thought he wasn't metabolizing the oxycodone well. They thought he was basically overdosed (although at the right dosage- just that it was having the effects like an overdose). It made sense. They gave him narcan. Narcan is the drug that they give drug addicts to undo the effects. Narcan works quickly. And they gave it to Owen and he opened his eyes and made eye contact with me and Nick but immediately his eyes rolled back and he went non-responsive again.

That wasn't the response they were looking for. They decided to get a blood has on him to test his CO2. He opened his eyes a couple times. He moved one leg. They said it was probably just the narcotics but that they would be back in an hour with the result of the blood gas and to check on him. They said sleep. He would be okay. 

Two hours later they woke us up. His CO2 levels were extremely high- 130. A normal persons number is 45.  They needed to do another blood gas. They did it right there and the results came back 5 minutes later. Still 130. They said "pack up, he needs to go to the ICU a now." 

Within a half hour were were in the ICU. We didn't know then but they thought he was goi t to have to be intubated. They tried the bipap first and after playing with the numbers they were able to get his CO2 number to start to decrease. When the number hit 90, I felt the tension leave the room and the docs began to smile.

It was quite tense before that.

Apparently Owen's bicarbonate level showed that Owen had been chronically retaining CO2. His levels showed that his kidneys and liver have been compensating for elevated CO2 for some time. This isn't something we knew. We have had sleep studies done and while Owen shows and elevated level, he also shows he can expel it. Or so we thought. It dawned on me during these conversations that Owens last sleep study was done while he was in the hospital coming off bipap for pneumonia and RSV, so it's quite possible it wasn't an accurate study since he had been blowing off his CO2 with the bipap that hospital stay. Needless to say there is another sleep study in our future for an accurate baseline. 

CO2 buildup and levels like Owens cause acidosis. Respiratory acidosis is when there is too much carbon dioxide in the body. CO2 is an acid. Other names for this are hypercapnic acidosis and carbon dioxide acidosis.  The symptoms are sleepiness, lethargy, hallucinations. If it gets bad it can cause cardiac arrest and death. 

About that cardiac arrest. The 30 minute response time was bothering me. It bothered me that they have that long to respond at that level of call for assistance which is an elevated call. It's the call below code. I asked the ICU nurse, I said if we were home, what would we have done? I asked, what if the ambulance took 20-30 minutes to get there? What would have happened and she said "he would have went into cardiac arrest" and that we would have had to start CPR immediately. 

All of that still bothers me. If I had taken him home, he could have died. If I hadn't demanded a code, he could have went into cardiac arrest. I don't know CPR. 

Everything happens for a reason right? I like to think that we didn't leave the hospital because this was supposed to happen there so Owen didn't die and we have learned a lot about Owen since. I now have a list of post-surgery demands that I didn't have before- ICU, bipap, lasiks for fluid retention, bicarbonate and blood gas monitoring. 

About that lasiks for fluid retention. Owen was puffy all week. I said it over and over. Finally, the attending in the ICU said "mom, is he puffy to you?" I told her yes and that I had been saying it all week. Up until that point, Owen could not be taken off oxygen. He would immediately desat. The attending ordered one dose of lasiks and he peed 1 liter of fluids. After that he no longer desatted when removed off the oxygen. 

We go home tomorrow. We have some new machines. A bipap for nighttime and IPV machine which is like chest PT inside the lungs. We are trying a new med to help with secretions. It's an aggressive home therapy plan. But the Pulmonologist here is hopeful it will encourage healthy tissue growth in Owen. 

The morals of the story- go with your gut,  you are the best advocate for your child, when your kid stops breathing push the code button behind the bed and feel no shame in doing it- some rules are meant to be broken, you are your child's best doctor and nurse, be adamant when you see things aren't how they should be - post anesthesia behavior, fluid retention. Speak up. Make them write it down. If shit gets cray- get a copy of the medical records from your stay including operative report and radiology reports. Make a list of what should go different next time and insist on it. And if you don't like the care you are getting from one of the docs, you don't have to deal with them. Speak to a nurse practitioner, your treating physicans, and lastly patient relations if need be. 

 

It's been too long!!! And a parent's guide to VEPTR surgery. Multi-tasking at it's best.

I fell off a little bit. I usually find this blog to be therapeutic, I also sometimes get a little depressed writing about surgery after surgery. And after the infection and resulting surgeries, I felt a little down about everything and needed a mental break from reliving that nightmare. But lately, I have made a lot of new friends with kids like Owen (children with Escobar, children with VEPTRS and often, children with both) and I felt a renewed sense of wanting to share our experiences with everyone.

I decided since we are coming off our first bilateral VEPTR expansion, to share some of the things I have found about Owen's surgeries. Maybe it will be useful to some of the parents who are about to go through this and it may help your visit to the hospital to go smoother for the parents and the patient.

So here are some tips-

Pre-op:

TIP 1
One of the things I insist upon now is the CHG wipes (Chlorhexidine Wipes) prior to surgery. These are packets of individual use wipes that are used the night before your childs surgery to attempt to prevent infection. Dr. Campbell's office introduced me us to the wipes, but now I ask every where we go. I am not sure if it helps, but if you can take an extra precaution, why wouldn't you? Up until this last surgery, it was my understanding that these wipes are to be used the night before surgery after a soap and water bath. One hour post bath, wipe the child down pursuant to the direction (i.e. neck down only, one wipe for certain body parts). This last time we visited CHOP, I was sitting in the rocking chair in pre-op and I noticed from a sign that the second CHG bath is to be given in that room prior to surgery. I showed the sign to the nurse and he was given bath two. After our experience with infections, I am at the point where, if she would have let me use them on my body, I would have. So tip 1- ask for the wipes and make sure you do it pre-op!

TIP 2
The On-Q pain ball. I am not sure if they are using this everywhere, but Dr. Campbell used to use in in San Antonio and currently uses it for VEPTR placements at CHOP. We were one of the first cases to use it at CHOP. Dr. Campbell was very curious to see what we though of it as parents. Initially, I did not find it helpful. Owen needed all of the morphine rescues, all of the oxy, valium and tylenol they were willing to give. But, on day 4 post-op when it was removed, Owen's heart rate increased. He needed a little more oxy and things like peaking in his dressing caused a crying fit. So I asked some questions about it and I began to understand it's purpose a little better. It numbs topically. It's purpose is to basically battle incision site pain. I personally wanted Owen to have all of the available pain management options out there and I am thrilled we were able to get some relief with this. So if it's available, I suggest asking your doctor about it. It is embedded. It does have to be taken out by the surgical team, although it takes one second (less time than removing an art line).

TIP 3
Stool softener. I am going to do an experiment before Owen's next surgery and I am going to give him a stool softener prior to surgery. And then request the colace and the miralax post-surgery. I am a nut about this because when you have a child who cannot expand his chest wall and who breathes with his diaphram solely, a poop backup causes lot of symptoms. For one, an extremely distended stomach which sometimes can give you issues regarding the diagnoses of fluid retention- which is another very important issue you are watching for. Secondly, it causes desaturation in oxygen. He cannot breathe the same way. Third, his heart rate becomes elevated due to the pain, which no one can tell if it's from that, or from the incision so more pain meds are given- which leads to slower systems- which contributes to the lack of poop. So be adamant about stool softener immediately after surgery.

TIP 4
Kind of related to tip 3, but when your child can eat and is given permission, give them food. Food makes it better. They poop. They are happier and stronger. They seem more like themselves. Even if they don't seem hungry, try to get a couple of bites in.

TIP 5
Pain meds. Do not be afraid to ask for them, to ask for an increase in dosage, to ask for less of them and to ask them to refrain from giving a dose. After Owen's first surgery, I thought Morphine was the best thing since sliced bread. It made Owen okay. After his right VEPTR placement, I realized how overly medicated your child could be and how that can be detrimental to his healing. Owen was a zombie the second time. So much so that I asked them to stop giving him Morphine for a day so he could wake up. He would sit upright in his chair and be asleep. He didn't wake if I held him. I was getting worried. So the nurse and I spoke and I asked that they stop giving it.

TIP 6
You know your baby better than anyone. ANYONE. I will use fluid retention as an example. Owen has needed lasix after both VEPTR placements. I could tell that he was swollen. His fluid output was very positive. His breathing was affected. His O2 levels were not high enough. Now, post-surgery your child may be swollen from placement. They are face down for a lot of hours. But at some point you begin to say to yourself- hmmmm, he looks a little more swollen. Or it's post-op day 2 and I still see he looks chubbier than normal. Speak up. SPEAK UP. Maybe because I am a medical malpractice attorney, I feel comfortable sticking my nose in and asking tons of questions and really being a part of all of his medical decisions. But I cannot stress enough to those of you who are less comfortable, speak up. You know your baby. You are the expert in your child. So if there is any behavior, symptom, twitch, or minute detail that you are wondering if you should mention- mention it. They will respect your input. They use it. And if they are as quality as our team is- they will will appreciate you for bringing it to their attention.


Okay- that is all I have for now. I eventually want to write something on prophylactic meds for those of us who deal with infection, but I must run for now!

AND any input you other moms and dads have on this topic- please comment. I would love to know what you find useful as well!

An update on the last few weeks...

As most of you know, Owen had his right VEPTR placed on October 4, 2011. It was a big and tough surgery and Dr. Campbell placed one long rib to spine rod with two fairly large outriggers that would keep Owen's right ribs from "parasoling" or shutting like a shutter. We remained in the hospital for one week and were thrilled to get home. We love CHOP, and we have some amazing PICU nurses there, however, we were anxious to get home.

We were sent home knowing that Dr. Campbell had a hard time closing Owen this time. The lumps in his back were quite noticeable and Dr. C said that he only got about a quarter inch of skin flap. A lot more skin flap is usually achieved and usually hoped for. But he was able to get it closed.

Nick and I had to make sure we changed the dressing this time, as opposed to June when we were allowed to remove it when we got home. We changed his dressing every 48 hours. The first week home was fine. We had a wound care checkup on October 17 and everything looked good. Then Wednesday, October 19, Owen got a fever. It was only 101.3 and the directives were that if he was over 102, come back to Philly. That night his fever only reached 101.7. I emailed the doc in the morning and since his wound was not actively leaking, we could stay home and wait it out. Maybe he just had a cold.

On Friday, October 21, I got up and got ready for work. I changed Owen's dressing and it was definitely actively leaking and I could see the metal in his back. I quickly called Nick and began to pack to head to Philadelphia.

We arrived in Philly and were admitted. Owen's wound was cultured and he tested positive for Staph gram negative, which is a very distant cousin to MRSA and one of those pesky bugs that likes to stick around. We scheduled surgery for Saturday October 22 for Dr. Campbell to take out the lower outcropping since it was coming through the skin and had contact with the staph.

On October 22, Dr. C did just that. He removed the lower outcropping, placed a wound vac in Owen's back and irrigated and debrided the wound. Surgery was again scheduled for later in the week to remove the wound vac, irrigate and debride the wound again and hopefully close him up. In the interim, Owen required Vancomycin and Rifampin- heavy duty antibiotics to fight the staph. He had to have a PICC line placed to deliver these antibiotics since they reek havoc on your blood vessels.

On Monday October 24, Owen went in for the PICC line under general anesthesia.

On Tuesday October 25, Owen went back in the OR to remove the wound vac and clean out the wound again. Dr. C felt the wound area looked great. He was able to get him partially closed, but we would be going home with an open wound. And by open wound, I mean that I can see metal and muscle in my sons back.

On Friday October 28, we were discharged with the PICC line and with the open wound. We had to learn how to flush the PICC with heparin two times daily and we had to do nightly dressing changes with betadyne and sterile dressings. And we did and we still do.

On Friday November 4, we had our first wound check-up with Dr. C. I removed Owen's dressing, thinking we had been doing such a great job. It looked a bit better to me and there was lots of pink skin that was granulating. But he took one look and said "oh no". Apparently, the skin is hardening around the edges and is trying to heal open. It's not healing from the bottom up as we would have hoped. In addition, the upper outcropping is poking too far out and threatening the integrity of one of the portions of the wound that is closed. Now, as of last night, the wound is leaking again.

Surgery is scheduled for tomorrow. We will go in, the upper outcropping will be removed. I am not sure if a wound vac will be placed and Dr. C will attempt to get this little boy closed.

It's a bit of a nightmare. And the craziest part is that these pieces have to go back in. Without the outcroppings, the ribs will shut on his lung. So Dr. C is going to see if he can have custom pieces made for Owen that will fit him. The insane part of this is that, this could happen every single time. No one is safe from these infections. We did everything humanly possible to prevent infection before the VEPTR was placed. CHP baths for Owen, Nick and I washed solely with Dial anti-bacterial body wash. Everything he or we touched was cleaned with clorox wipes. We really really did our best.

I am praying and hoping and wishing on a star that this is the last surgery. I will keep you posted!

Post-VEPTR and no folks, that's not plural

It's 9 days post-surgery. And we are home. And that is a wonderful thing. For those of you who want to know what the surgery experience is like, read this. For those who don't, don't read this post. It's not horrible or full of gore, but it's not particularly pleasant either.

This is what our week was like. Monday we arrived in Philly. We had to go to the hospital for a 3D chest CT scan. Basically the terms under which we were there having the CT Scan were: If there is no CT Scan, there is no surgery. And we cannot sedate him because Owen has centralized apnea and therefore must be put under general anesthesia and monitored. And my terms were: no general anesthesia period. He is having surgery in the morning and we aren't putting him under 2 times in 2 days. No. Their return terms: We aren't going to perform the CT Scan if he so much as moves or cries. And my return terms: Oh yes you are. So it was a tense situation. But a little help from benedryl (with permission of course) and Owen took a well-timed nap and we got the CT Scan done. I literally sweated through it, but the relied we felt when it was over was immense.

Monday night, we went to the hotel and played. We went out to dinner. We tried to show Owen a good time.

Tuesday morning at 4:30 am, we wake up and Owen is on to us. He can see that we are anxious and he is anxious too. We get to the hospital for 6am. We are called in at 6:30 and Owen is given some medicine to calm him. They should give the mommies that medicine. Owen was now fine, but we were scared. We met with the docs and the nurses. We went over everything with each one of them. And by 8am, they took Owen away.

We went to get coffee. And we met up with one of the moms I had been talking to whose son had VEPTRS placed the previous Tuesday. That kept us going. Meeting her and her son gave Nick and I such hope. It was one week later and they were both in the cafeteria, he was smiling, gave us a high-five and he was straight. It was amazing. We felt a little better.

Surgery took 7 hours total- 2 of which were positioning and prepping. At some point they came out and told us that due to O's extra tissue (facia- which is comparable to scar tissue) it was a very difficult surgery and they were only able to the complete the left side. He was under for along time at that point and to start working on the right which would have taken about as long would have been too dangerous. So we have to go back. I am disappointed that we have to go through it again, but of course, what's safest is the best. I just don't know how I am going to look Owen in the eye next time. Safe to say, I am not getting the mom of the year award from O. At least not while he and I cannot have an intelligent conversation about why we are doing this.

When we got up to the ICU, Owen was having a little trouble breathing. They thought they would have to intubate him again. They took some x-rays and he had some fluid in his lung. We waited and they decided to let him breathe with just the help of some oxygen and see if it would work itself out since he was saturating okay.

The first two days were hard. He was hooked up to 5 machines. He had a central IV line, an arterial IV line, an IV in his hand. He was on morphine round the clock. He had a catheter called an OnQ for pain near the incision site. He was on oxygen. He had a huge dressing on. He was pale and puffy and could barely cry due to the intubation. We watched his heartrate and his oxygen levels constantly. He wouldn't make eye contact with Nick or I. He couldn't poop. It was not nice. It was miserable. The hospital was amazing. Their ICU was incredible. Owen had a nurse to himself. He made a peep and she was in our room over him. I didn't even change a diaper because by the time I checked it, she was in there and it was done. I felt helpless and was thankful that someone knew how to take care of him. I couldn't hold him or move him. I just kissed his forehead even though he would not look at me.

On day 3 he was still retaining too much fluid. It was around his heart and lungs. They had to give him diuretics to help him. At one point, they took his oxygen out to see how he would do and he immediately desaturated, turned bluish and vomitted. It was still a touchy situation.

Day 4, he saw his brothers. He talked. Even smiled. Still a lot of pain.

Day 5, he smiled some more. He touched his toys. He talked a little more. Still pain. They were able to take his O2 out. We were moved to the surgical floor, no longer in need of ICU level care.

Day 6 he turned a corner. He kicked his legs, shook his head no, smiled, touched his toys. Laughed at Elmo. Played peek a boo.

Day 7, we were both so ready to go home that Owen was a star for the nurses and we were discharged. Thank the Lord above.

These last two days have been good. There is still some pain and now a cough, which usually happens after he is put under. We are taking measures to help it go before it turns into pneumonia.

We are post-VEPTR. And although we have to do it again, the fear of the unknown will be a thing of the past and we will know what to expect and how to deal with it. It will be no less hard, but we will get through it.

I have to go now, but I will write a post over the weekend about the pretty amazing people we have around us and all they did while we were away. We love you all and owe you a tribute!

Thank you for the prayers and support everyone. We wouldn't have made it through this without everyone being behind us.

Appointments and Updates....

It was/is and will continue to be busy around here. I just want to write an update so all who want to know, can know what is going on with Sir Owen.

November 23, Owen has a spinal MRI. Just about everyone who treats him feels that this will reveal that his spinal cord is tethered. A tethered spinal cord is when the cord attaches to this tissue around it which anchors it and inhibits its ability to move up or down in the spinal canal as he moves and grows. Our first whole body MRI revealed that he had a "borderline" tether. Surgery will need to be done immediately (within a few weeks).

December 13, Owen has testicle surgery. We have done this before and hopefully if all goes well with intubation this time, we will be in and out of surgery in a few hours and settled in for our night of observation. The doctor will make three tiny incisions, put a scope through one, locate the testicle and push it down through one incision and pull it through the other. He will have 6-10 meltaway stitches and hopefully it will go as well as the first surgery.

We met with Dr. Campbell. Dr. Campbell took one look at Owens films, ordered a whole bunch more and told us that Owens spine is trying to torque to his right. So as it tries to turn, its shutting the ribs on the right side like a shutter. In addition, his lung on his left side which is on the concave side of his body is being compromised vertically. Dr. Campbell created the VEPTR, which I have wrote about before. VEPTR stands for Vertical Expandable Prosthetic Titanium Rib. Owen will need two, one for each side and a set of anchors on each side that give the prosthetics some extra strength. One of the prosthesis will apply pressure down on the spine pushing the spine back, as it tries to continue to turn. The other will open and spread his ribs creating room for the lung. The before and after x-rays that we saw were remarkable. Owen will be straighter as result of the surgery, although its not the goal of the surgery. The goal is to create space for the lungs to grow and for biology to work for itself without further intervention by us. Needless to say, this is big for Owen. In good ways and bad. It potentially saves his life and allows his lungs to grow and have the space they need. It also begins the next 12 or more years of expansion surgeries which happen every 6 months. Most of the risks are rare, but skin breakthrough seems to be inevitable. Surgery is tentatively scheduled for March 22 in at CHOP in Philly.

This has also pretty much guaranteed Owen will be getting a feeding tube. We have one more month of feeding him as we are and seeing what his weight gain is and then we will have to have one. Nick thinks I have made the feeding tube symbolic of all Owens problems. I think as his mom, one of my most important jobs in taking care of him has been to feed him and now I feel like I am being usurped.

It doesn't matter though because he needs it for surgery and that is the end of that. He needs it, he gets it. Now I just have to figure out what that means for us, the baby sitter and potentially a nurse, since I work.

Wednesday of this week, we are back to CHOP for pulmonology tests for the VEPTR. Soon after we will be scheduled for the Dynamic MRI and a CT scan so that the doc can look down O's spinal cord.

That's all I have for now.

For anyone who is interested, here is Dr. Campbell's testimony before the Senate Health Committee regarding the VEPTR. http://www.aap.org/advocacy/washing/Therapeutics/docs/campbell.pdf

Owens Ribs

A couple of weeks ago we had a chest x-ray for Owen. The orthopedist ordered this because Owen is not gaining weight fast enough and sometimes in Escobar babies, this happens because they have very small chest cavities and/or the scoliosis makes it difficult for them to breathe. In such a small baby, that effort to breathe causes them to expend a significant amount of calories thereby making his ability to gain weight a problem. We really were hoping that this would not be the case with Owen, but the doc called us yesterday and it is. Owens left lung does not have enough room and it needs to be fixed. We have to meet with the pulmonoligist on Thursday of next week. Today I have to make our appointments to go to CHOP (Children's Hospital of Philly) to meet with Dr. Campbell to have a real time MRI and sleep tests done to see what Owen's breathing capacity is. Depending on the results, we will be figuring out when we will schedule (or hopefully how long we can put off) surgery. The surgery is called VEPTR or the titanium rib project. We are fortunate enough to be able to meet with Dr. Campbell himself as he is the inventor of the titanium rib. Our ortho and our pulmonologist trained with him so one or both will assist in the surgery, whenever it may be. I feel a little defeated by all of this. Its huge surgery and once its done, every 6 months they will go in (surgically) and adjust it. I cannot tell you how badly I wish this wasn't the case. The doctor said, in terms of a lethal diagnosis, if anything were going to go wrong, it would be related to the lung and the difficulty breathing and therefore it must be fixed. I don't really have any positive thoughts or words on this. I am just upset. I don't know why this particular issue has me crying and so down, but I guess I felt like I was at my limit before this call came and now, I am certainly there. What my baby is going to have to face in these next few years is breaking my heart and I know I can't let him know that and I have to put on a brave face and be strong for Owen. I just have to find some strength because today I feel as though I have run out.