We got up this morning and found out that Jadon had had a reasonable night but not great. He was struggling with blood pressure and pulmonary edema (fluid on the lungs). The medical team determined that a likely source was that the left ventricle was not pumping properly which is somewhat perplexing as the left ventricle was not touched during the surgery. Normally the right side of the heart is the one that takes longer to come tfull function but Jadon 's right ventricle is doing fairly well.
To determine if they can find the issue they decided to do a surgical procedure at the bed side. They went back into the chest (it had not been fully closed) and stopped a few bleeding spots. They then clamped the ECMO tubing off meaning that all the blood was going through Jadon's heart and dependent on him to pump it. Jadon did not tolerate it well as his blood pressure dropped significantly. However they were able to complete an echo (ultrasound of the heart). They deemed that structurally all was sound. The tricuspid valve they had difficulty with during surgery is doing well. So... The diagnosis is that the left ventricle is worn or from being on the bypass machine so long. Do they want to give it a couple more days to rest so Jadon stays on the ECMO. To help relieve pressure to the left side of the heart and let it rest better the surgeon put in a small relief tube into the left atrium to drain some blood out.
And we wait and pray. As of now they don't see a reason why it won't recover. If it doesn't in the next few days they will have to explore other reasons.
Friday, 13 February 2015
Today is test day
Jadon is still on ECMO and is still having issues. They plan on doing an echo (heart ultrasound) to try and determine why his left ventricle is underperforming. The results of this test will determine the pathway guard but we are looking at a longer ICU stay than we were originally anticipating.
They will be clamping the ECMO during the test so we will also see how Jadon tolerates bring off the ECMO (hopefully long enough for the echo to be completed)
They will be clamping the ECMO during the test so we will also see how Jadon tolerates bring off the ECMO (hopefully long enough for the echo to be completed)
Wednesday, 11 February 2015
A long long day
We started the day by waking up at 4:30 to get here at Sick Kids by 6:00am. Once here Jadon got another bath with antiseptic soap and was changed into his hospital gown. He was ready for surgery by 7:30 but surgery wasn't ready for him. He was scheduled for second surgery so we had to kill time until around 1:00om. The challenge was that Jason could not have any solids since midnight the night before. Hornet he was wonderful. He enjoyed posing in the pay room on the cardiac floor (lots of new toys! ) and we walked around and around and around the hospital. Jason even fell asleep for over an hour. His SATs were better than we had seen then in a long time so he went in to surgery in good shape. .. which became very important later on.
Sara and I had lunch and walked around a bit and then went to the Ronald McDonald room where we each got a recliner in a quiet zone where we caught about an hours sleep. We then headed down to wait in the surgery waiting room. ..anticipating news by around 7:00. I know we say that no news is good news but... this was not the case.
Due to Jadon's heart being on the right side of his chest it took a little longer to get full access to the heart. The major part of the surgery went well but they noticed that one of Jadon's valves was leaking. They had to fix it and also then replace the valve from the pulmonary artery which they were not planning to do. This made the surgery much longer. About 9 hours in, the surgeon came out and told us that as a result Jadon's heart was weakened and he was put on an ECMO (a machine that does the work of the heart and lung). He had just been transferred to the ICU after 11 hours of surgery. The surgeon mentioned after the surgery that Jadon is doing a bit better than they anticipated given the challenges of the surgery and the emergency valve repairs. We will get to go see Jadon in a few more minutes now.
We continue to appreciate your prayers and feel supported by them.
Ephesians 3:20, 21
Sara and I had lunch and walked around a bit and then went to the Ronald McDonald room where we each got a recliner in a quiet zone where we caught about an hours sleep. We then headed down to wait in the surgery waiting room. ..anticipating news by around 7:00. I know we say that no news is good news but... this was not the case.
Due to Jadon's heart being on the right side of his chest it took a little longer to get full access to the heart. The major part of the surgery went well but they noticed that one of Jadon's valves was leaking. They had to fix it and also then replace the valve from the pulmonary artery which they were not planning to do. This made the surgery much longer. About 9 hours in, the surgeon came out and told us that as a result Jadon's heart was weakened and he was put on an ECMO (a machine that does the work of the heart and lung). He had just been transferred to the ICU after 11 hours of surgery. The surgeon mentioned after the surgery that Jadon is doing a bit better than they anticipated given the challenges of the surgery and the emergency valve repairs. We will get to go see Jadon in a few more minutes now.
We continue to appreciate your prayers and feel supported by them.
Ephesians 3:20, 21
Monday, 9 February 2015
Pre-op Done
We had a busy day today. Sara, Jadon and I headed down to Sick Kids and arrived at 7:00. Our first stop was the blood-work clinic where we found out that the hospital had just switched over to a new registration system online. It caused some delays and I am sure that the IT department earned their money today! After blood was drawn, we headed down for a chest x-ray and then up to the Cardiology Clinic. Once there, we were ushered into a room to receive teaching about the operation and to meet some people involved in Jadon's care. We met the staff surgeon, a surgical fellow, an anesthetist, and research associate. A nurse practioner student was also in the room the entire time and she will follow Jadon into the OR as well. The nurse educator went through the whole surgery and post -operative process with us talking about what to expect. Overall, it was a busy but very informative day.
About Jadon's surgery: He will be having a Tetralogy of Fallot repair. I asked the surgeon how many were done yearly at Sick Kids' and he indicated that the surgical team likely performed around 50 Tet repairs yearly. After a VSD (hole between the two ventricles), it is the most common surgery they perform. What exactly is involved?
1. VSD Repair - Jadon has a rather large (about 1 cm) hole between his two ventricles. This means that his oxygenated and deoxygenated blood mixes. This hole will be patched up (with a material similar to polyester, apparently!)
2. Aorta Shift - Jadon has an overriding aorta, meaning it sort of lies above both the right and left ventricle and so gets blood from both. As they repair the VSD, they will shift the aorta so that it properly only gets blood (oxygenated) from the left ventricle.
3. Pulmonary Artery Stretch - the pulmonary artery (carrying deoxygenated blood from the right ventricle to the lungs to get the blood oxygenated) is thin, as is the valve between the ventricle and the artery. This will need to be cut and a patch put in to widen it. Given the tiny size of Jadon's valve, they likely will have to cut his valve away completely. He will then live without this valve with very little to no side effect until likely into his late teens or early twenties at which time he will need a valve put in.
4. Muscle Shave - as a result of his heart needing to pump so much, Jadon's right ventricle is buff! This might be great for biceps and abs, but not so much for the heart, as it causes problems. Some muscle tissue will need to be shaved from Jadon's right ventricle.
As a result of Jadon's advanced age for this surgery (they typically prefer the surgery done around 5- 6 months of age), the pressure differences in Jadon's heart after it is repaired could be problematic. This is due to his stiff right heart and non- stiff left heart. To avoid complications from this pressure differential, they will also cut a small hole (a few mm) between his two atria, to act as a pressure relief valve. We were told that his body will likely depend on this quite a bit for the first several days, but that once the initial recovery is over, this little hole often heals itself, or if not, does not cause any further problems.
So there you have a layman's understanding in layman's terms what the surgery entails. Obviously, though it is a relatively common surgery, it is still quite complex. The recovery time depends on the individual patient, but we are to expect about a week in the hospital.
Thanks again for your prayers and support. 32.5 hours to go!
About Jadon's surgery: He will be having a Tetralogy of Fallot repair. I asked the surgeon how many were done yearly at Sick Kids' and he indicated that the surgical team likely performed around 50 Tet repairs yearly. After a VSD (hole between the two ventricles), it is the most common surgery they perform. What exactly is involved?
1. VSD Repair - Jadon has a rather large (about 1 cm) hole between his two ventricles. This means that his oxygenated and deoxygenated blood mixes. This hole will be patched up (with a material similar to polyester, apparently!)
2. Aorta Shift - Jadon has an overriding aorta, meaning it sort of lies above both the right and left ventricle and so gets blood from both. As they repair the VSD, they will shift the aorta so that it properly only gets blood (oxygenated) from the left ventricle.
3. Pulmonary Artery Stretch - the pulmonary artery (carrying deoxygenated blood from the right ventricle to the lungs to get the blood oxygenated) is thin, as is the valve between the ventricle and the artery. This will need to be cut and a patch put in to widen it. Given the tiny size of Jadon's valve, they likely will have to cut his valve away completely. He will then live without this valve with very little to no side effect until likely into his late teens or early twenties at which time he will need a valve put in.
4. Muscle Shave - as a result of his heart needing to pump so much, Jadon's right ventricle is buff! This might be great for biceps and abs, but not so much for the heart, as it causes problems. Some muscle tissue will need to be shaved from Jadon's right ventricle.
As a result of Jadon's advanced age for this surgery (they typically prefer the surgery done around 5- 6 months of age), the pressure differences in Jadon's heart after it is repaired could be problematic. This is due to his stiff right heart and non- stiff left heart. To avoid complications from this pressure differential, they will also cut a small hole (a few mm) between his two atria, to act as a pressure relief valve. We were told that his body will likely depend on this quite a bit for the first several days, but that once the initial recovery is over, this little hole often heals itself, or if not, does not cause any further problems.
So there you have a layman's understanding in layman's terms what the surgery entails. Obviously, though it is a relatively common surgery, it is still quite complex. The recovery time depends on the individual patient, but we are to expect about a week in the hospital.
Thanks again for your prayers and support. 32.5 hours to go!
Sunday, 8 February 2015
Final Countdown...
We have not posted in nearly a month. To be honest, this has been on of the longest months of our lives. Since the last post, Jadon was admitted once again to Sick Kids' for another 4 night stay. During this stay, the tune of the cardiology team changed. They realized that Jadon's BT shunt (the procedure he had done in Vietnam to buy him some more time before his complete repair) was no longer working to the level it needs to. He has outgrown his shunt and is in need of his complete Tetrology of Fallot repair as soon as possible. We were initially given a date of Feb 4 for his surgery. The problem is... he needs to be healthy for the 2 weeks before they operate. He has only had one 2 week stretch of health since he has joined our family about 3 1/2 months ago! We had to let them know that he had another cold, and so we have been given a second surgery date of Wed, Feb 11. We have been counting down the days... doing all we can so that he remains bug free. Three of our other children have had colds. We have been quarantining, hand washing, hand sanitizing etc... With about 54 hours left until surgery time (yes, we are counting down the hours), Jadon is so far healthy. We head in to Sick Kids tomorrow for his pre-operation meetings and work-up.
Jadon's three admissions to Sick Kids, for a total of 9 nights, have allowed him to be looked at and examined by many doctors and health professionals. The following are a list of specialists he has seen:
Cardiologist
Cardiovascular Surgeon
ENT (ear, nose throat)
General Surgeon (follow up on trachea-esophageal fistula repair)
Occupational Therapist
Dentist (teeth and heart have a strong medical connection - he would have had to get any cavities fixed prior to his heart surgery. Surprisingly enough... no cavities)
Dietician
Respirologist
We truly appreciate all of the prayers that have been lifted up on our behalf. It is truly amazing to be supported in this way. We know of specific people in 5 continents who are praying for Jadon daily. It truly humbles us and helps us to appreciate the greatness of our God.
This wait has been one of the hardest times in our lives. It's funny because one of the songs I often sing to Lilin when she is dashing around or getting worked-up is "Have patience, have patience, don't be in such a hurry!" It's easy to sing to her, more difficult to put into practice. This last two weeks we have been wanting time to rush by so that Jadon remains healthy. If he gets a cold his surgery would need to be delayed another two weeks... and his heart is such that he really needs the surgery now. He is on oxygen at home here for much of the day. If he sits around and doesn't move, his SATs usually sit high 60s, low 70s. As soon as he moves around he drops into the low 60s or high 50s. We were told that the doctors are comfortable as long as his SATs stay above 75!
We have been encouraged by the words of Isaiah 40. The italicized part shows us the care of our loving God, particularly for the young like Jadon.
For Sara and I, we have been bolstered by the last verses of the chapter.
Thanks again for your support. Continue to pray for Jadon's health for 54 more hours... then pray for a successful surgery and good recovery.
Jadon's three admissions to Sick Kids, for a total of 9 nights, have allowed him to be looked at and examined by many doctors and health professionals. The following are a list of specialists he has seen:
Cardiologist
Cardiovascular Surgeon
ENT (ear, nose throat)
General Surgeon (follow up on trachea-esophageal fistula repair)
Occupational Therapist
Dentist (teeth and heart have a strong medical connection - he would have had to get any cavities fixed prior to his heart surgery. Surprisingly enough... no cavities)
Dietician
Respirologist
We truly appreciate all of the prayers that have been lifted up on our behalf. It is truly amazing to be supported in this way. We know of specific people in 5 continents who are praying for Jadon daily. It truly humbles us and helps us to appreciate the greatness of our God.
This wait has been one of the hardest times in our lives. It's funny because one of the songs I often sing to Lilin when she is dashing around or getting worked-up is "Have patience, have patience, don't be in such a hurry!" It's easy to sing to her, more difficult to put into practice. This last two weeks we have been wanting time to rush by so that Jadon remains healthy. If he gets a cold his surgery would need to be delayed another two weeks... and his heart is such that he really needs the surgery now. He is on oxygen at home here for much of the day. If he sits around and doesn't move, his SATs usually sit high 60s, low 70s. As soon as he moves around he drops into the low 60s or high 50s. We were told that the doctors are comfortable as long as his SATs stay above 75!
We have been encouraged by the words of Isaiah 40. The italicized part shows us the care of our loving God, particularly for the young like Jadon.
10 See, the Sovereign Lord comes with power,
and he rules with a mighty arm.
See, his reward is with him,
and his recompense accompanies him.
11 He tends his flock like a shepherd:
He gathers the lambs in his arms
and carries them close to his heart;
he gently leads those that have young.
and he rules with a mighty arm.
See, his reward is with him,
and his recompense accompanies him.
11 He tends his flock like a shepherd:
He gathers the lambs in his arms
and carries them close to his heart;
he gently leads those that have young.
For Sara and I, we have been bolstered by the last verses of the chapter.
28 Do you not know? Have you not heard?
The Lord is the everlasting God,
the Creator of the ends of the earth.
He will not grow tired or weary,
and his understanding no one can fathom.
29 He gives strength to the weary
and increases the power of the weak.
30 Even youths grow tired and weary,
and young men stumble and fall;
31 but those who hope in the Lord
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.
The Lord is the everlasting God,
the Creator of the ends of the earth.
He will not grow tired or weary,
and his understanding no one can fathom.
29 He gives strength to the weary
and increases the power of the weak.
30 Even youths grow tired and weary,
and young men stumble and fall;
31 but those who hope in the Lord
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.
Thanks again for your support. Continue to pray for Jadon's health for 54 more hours... then pray for a successful surgery and good recovery.
Saturday, 10 January 2015
"If I were you, I would keep him in a bubble..."
It has been a while since I wrote an update on little J so I thought I should spend a few minutes and type a blog post. The title of the post is a quote from his pediatrician when I asked him if I could take him out and enjoy social engagements with our friends. So we are basically keeping him away from people as much as possible. Steph and I love visitors, love getting together with friends and love to do things outside of the house with the kids. This has been a bit of an adjustment for us but we know there is likely an end in sight so we are doing what we have to do to try and keep Jadon healthy.
Keeping Jadon healthy in no easy task. He has been admitted four times so far. Twice in Vietnam and twice here. We have only had him for around 2.5months so if you do the math he has been sick a lot of the time. This past week he was admitted for four nights due to a cold. Yup, you read correctly. Not a flu, the common cold. It stressed his system out causing his oxygen saturation levels to drop. He was on oxygen and basically we had to wait for the cold to run its course.
On Monday his case was presented at the weekly cardiac surgical conference. In the late afternoon the cardiologist came to our hospital room to discuss what was determined at the meeting. They are quite concerned about his right lung being very small. Since his heart is in the right side of the chest instead of the left it appears his right lung may have not had the space to grow correctly. There is also some question about whether he has some areas of lung that are not functioning due to improper venous drainage. According to the cardiologist, his heart is stable. His heart is not the biggest problem...it's his lungs
He then told me the surgical team wants to do a CT scan of his chest to visualize him pulmonary vasculature to they know what they are dealing with when they open him up. I told them he had one done in Vietnam and showed him the results on a page written in Vietnamese. He said to ask the nurse to photocopy it and said he hoped this would be sufficient for the team. I expressed my concern about not wanting a second CT scan unless it was absolutely necessary seeing as CTs are so radiation heavy. After such negative news, I thought I would lighten the mood with a question about the surgical wait time. I figured that this last admission would strengthen the case for an earlier surgery. Nope.
"Six months."
I am sure my face must have fallen at this point because he then said, "I will tell the team that you would prefer it earlier."
After he left, I shed a couple of tears as I processed the fact that his health may not improve as much as I hoped post-surgery. He may struggle to breathe every time he gets a cold. He may always be sickly. This is something I know with God's grace, we can handle, but it is disappointing nevertheless.
Tuesday during medical rounds the team came to our room and were discussing Jadon still being on oxygen. The attending physician suggested maybe we needed to drop our oxygen saturation goals to get him off O2. Since we were only targeting an oxygen saturation of 70% dropping our target to 65% as suggested seemed crazy to me. He gets short of breath when his sats hit about 72%. Realizing the doctor just wanted to discharge him, I said, "He gets symptomatic at sats that low. I am, however, willing to take him home on oxygen. We have only had Jadon for 2.5 months and he has had four admissions. I am a respiratory therapist and would be comfortable managing him at home when he has a cold and all he needs is a little oxygen."
The doctor jumped at that and turned to the charge nurse, "How long does it take to arrange this?"
"Tomorrow."
"Good", she said turning back to me," you want out of here, and we want you out, so we will get you discharged tomorrow with home oxygen to use when needed."
This was a relief. I don't want him struggling to breathe, and I don't want him hospitalized every time he has a cold. Hopefully this occasional oxygen use should help lessen his admissions. Obviously, the amount of oxygen they are allowing me to administer is not high. If he gets too sick he will be admitted.
Later in the morning on Tuesday, the occupational therapist came to visit me and as per our discussion on Monday, tried Jadon on a number of foods to see if he was truly coughing and choking on solid foods or just gagging. She tried a number of foods including cheesies, biscuits, cooked baby carrots, and small chunks of fruit. His drinking on bottles, sippy cups and straws was also assessed. She gave me techniques to encourage his eating and tolerating of these types of foods. Since he coughed a few times and sounded "chesty" after the procedure she suggested we should do a swallow study to definitively confirm whether of not he was micro-aspirating or not.
She left the room and returned a bit breathless from running back and forth to the radiology department. She had managed to talk the radiologist into doing a test after the normal scheduling times! I was so very thankful. She arranged for a porter to assist me down to the department and met me down there. The poor porter should have been off on disability. She was wearing the whole isolation regalia of gown, glove, mask with face shield as she carried... Jadon's chart.
I had Jadon slung on one hip, the diaper bag on the other arm was pushing the oxygen tank along in front of me. The dear porter could barely walk. She was holding the handrail along the wall and moving so slowly I had to stop walking a few times in order to not walk into her. I am guessing she needs either a hip or knee replacement or both by the way she was hobbling around. People we crossed in the hall were definitely staring as they saw my heavily gowned, wounded porter leading me along the hallways. I felt bad for this woman. I am not sure why she is still working... there's got to be some way she could have a paid leave of absence.
The swallow study was interesting and informative. Jadon swallowed his food well with no traces of anything going into his lungs. The coughing and occasional spluttering are being caused by a bit of food still lining the wall of his throat after he swallows. The solution to this problem: teach him to take an extra swallow after he eats. I am still working on figuring out how to do this, since giving liquids is apparently not a good option; this will just get left along the wall too. Once I was back upstairs, sans porter (I couldn't make her walk any further) the OT came to chat again. She told me Jadon can slowly try eating anything. He was just gagging a lot as he missed the appropriate age to have foods introduced. If foods are not introduced at a year, then the gag reflex starts to move forward along the tongue and it can become overly sensitive. Who knew? Using his tongue and teeth may help him with making his sounds as well.
So we have started giving him solid foods and he is loving it! He is doing really well, is not gagging too often, and is really proud of himself. We of course are proud of him too! This makes feeding him so much more enjoyable and so much simpler.
I had a visit from the surgical coordinator shortly before I left on Wednesday. She told me the team wanted a CD of the chest CT done in Vietnam. If I could get a hold of that and the pictures were satisfactory to them, then we could avoid do a repeat CT. She told me to call her as soon as Jadon's cold symptoms are completely gone and they will book him a surgery date. She was much more comforting than the cardiologist had been. It appears she thinks she can get me in sometime in the next few months. We will see. :)
He was discharged Wednesday afternoon. My friends picked me up and we stopped at Medigas to pick up a couple of tanks in the event he needed oxygen that night. He had been weaned off the O2 during the night Tuesday and throughout the day Wednesday but the team wanted us to have some with us. It was a bitterly cold day. Jadon did not respond well to it. We left the vehicle and I ran the 12 feet to the door of the building. Upon entering the business, Jadon was breathing really heavily and his lips were blue. It seemed the frigid air really stressed his system. My friend who is a cardiac nurse noticed as well.
Upon arrival home he got super excited when we drove in the driveway. We quickly ran him inside then I checked his sats...57% I started getting the equipment together to give him O2 but he quickly improved in the warm environment of our home. He was saturating in the low to mid 70s when he was settled. The tough thing was he just wanted to walk around and play with the kids and his toys. It was sort of sad watching him try to walk. He was stumbling frequently and becoming short of breath very easily. It was amazing how not walking for nearly a week had completely deconditioned and weakened him.
Once Jadon was settled in for the night I messaged my agent in Vietnam about getting a copy of the chest CT on CD. She made a few phone calls and then told me she had Fed-Exed it to me! Yay! Loan is so helpful! This gesture saves Jadon a ton of radiation and may also speed up his surgery as we won't need to wait for a CT timeslot. Of course, this all hinges on the pictures being clear enough for the doctors to visualize the vessels they are concerned about. Praying they are acceptable!
Since there is cost involved in doing a rush FEDEX shipment I needed to find an easy way to pay her. One of the families leaving today for Vietnam, agreed to allow me to email them the money so they can pay Loan when they see her. I have never physically met this woman, and she has never met me. It is amazing how supportive adoption communities are. They just help one another without thinking about it. I am truly appreciative to KS for helping us out in this way. She only had a couple of days before she left when I asked her, and could have very understandably said, "I would love to but I am much too busy". Instead, she went out of her way for us. Have a safe flight, K!
Today, is Saturday and Jadon has been home since Wednesday night. He has changed in leaps and bounds since last Saturday, the day we took him to hospital.
Here are some of his big milestones since last week:
1. He can drink from a cup
2. He can eat solids...aka regular food
3. He has slept through the night most nights...phewf! (finally!)
4. He is starting to talk!! --Wednesday night he said, "Nigh nigh, Neff. (meaning "Night, night Steph. ) I guess he hears me calling Steph by his name so that is what he has been using instead of "daddy" lol!
Today he said a few more words. We are sooo thrilled with all this progress!
I can't stop thinking of the verse that has been impressed upon me so many times in the past couple of months, "Unto Him who is able to do immeasurably more than we can ask or imagine." On many occasions since we have adopted Jadon, God has done just that. We are truly thankful!
Keeping Jadon healthy in no easy task. He has been admitted four times so far. Twice in Vietnam and twice here. We have only had him for around 2.5months so if you do the math he has been sick a lot of the time. This past week he was admitted for four nights due to a cold. Yup, you read correctly. Not a flu, the common cold. It stressed his system out causing his oxygen saturation levels to drop. He was on oxygen and basically we had to wait for the cold to run its course.
On Monday his case was presented at the weekly cardiac surgical conference. In the late afternoon the cardiologist came to our hospital room to discuss what was determined at the meeting. They are quite concerned about his right lung being very small. Since his heart is in the right side of the chest instead of the left it appears his right lung may have not had the space to grow correctly. There is also some question about whether he has some areas of lung that are not functioning due to improper venous drainage. According to the cardiologist, his heart is stable. His heart is not the biggest problem...it's his lungs
He then told me the surgical team wants to do a CT scan of his chest to visualize him pulmonary vasculature to they know what they are dealing with when they open him up. I told them he had one done in Vietnam and showed him the results on a page written in Vietnamese. He said to ask the nurse to photocopy it and said he hoped this would be sufficient for the team. I expressed my concern about not wanting a second CT scan unless it was absolutely necessary seeing as CTs are so radiation heavy. After such negative news, I thought I would lighten the mood with a question about the surgical wait time. I figured that this last admission would strengthen the case for an earlier surgery. Nope.
"Six months."
I am sure my face must have fallen at this point because he then said, "I will tell the team that you would prefer it earlier."
After he left, I shed a couple of tears as I processed the fact that his health may not improve as much as I hoped post-surgery. He may struggle to breathe every time he gets a cold. He may always be sickly. This is something I know with God's grace, we can handle, but it is disappointing nevertheless.
Tuesday during medical rounds the team came to our room and were discussing Jadon still being on oxygen. The attending physician suggested maybe we needed to drop our oxygen saturation goals to get him off O2. Since we were only targeting an oxygen saturation of 70% dropping our target to 65% as suggested seemed crazy to me. He gets short of breath when his sats hit about 72%. Realizing the doctor just wanted to discharge him, I said, "He gets symptomatic at sats that low. I am, however, willing to take him home on oxygen. We have only had Jadon for 2.5 months and he has had four admissions. I am a respiratory therapist and would be comfortable managing him at home when he has a cold and all he needs is a little oxygen."
The doctor jumped at that and turned to the charge nurse, "How long does it take to arrange this?"
"Tomorrow."
"Good", she said turning back to me," you want out of here, and we want you out, so we will get you discharged tomorrow with home oxygen to use when needed."
This was a relief. I don't want him struggling to breathe, and I don't want him hospitalized every time he has a cold. Hopefully this occasional oxygen use should help lessen his admissions. Obviously, the amount of oxygen they are allowing me to administer is not high. If he gets too sick he will be admitted.
Later in the morning on Tuesday, the occupational therapist came to visit me and as per our discussion on Monday, tried Jadon on a number of foods to see if he was truly coughing and choking on solid foods or just gagging. She tried a number of foods including cheesies, biscuits, cooked baby carrots, and small chunks of fruit. His drinking on bottles, sippy cups and straws was also assessed. She gave me techniques to encourage his eating and tolerating of these types of foods. Since he coughed a few times and sounded "chesty" after the procedure she suggested we should do a swallow study to definitively confirm whether of not he was micro-aspirating or not.
She left the room and returned a bit breathless from running back and forth to the radiology department. She had managed to talk the radiologist into doing a test after the normal scheduling times! I was so very thankful. She arranged for a porter to assist me down to the department and met me down there. The poor porter should have been off on disability. She was wearing the whole isolation regalia of gown, glove, mask with face shield as she carried... Jadon's chart.
I had Jadon slung on one hip, the diaper bag on the other arm was pushing the oxygen tank along in front of me. The dear porter could barely walk. She was holding the handrail along the wall and moving so slowly I had to stop walking a few times in order to not walk into her. I am guessing she needs either a hip or knee replacement or both by the way she was hobbling around. People we crossed in the hall were definitely staring as they saw my heavily gowned, wounded porter leading me along the hallways. I felt bad for this woman. I am not sure why she is still working... there's got to be some way she could have a paid leave of absence.
The swallow study was interesting and informative. Jadon swallowed his food well with no traces of anything going into his lungs. The coughing and occasional spluttering are being caused by a bit of food still lining the wall of his throat after he swallows. The solution to this problem: teach him to take an extra swallow after he eats. I am still working on figuring out how to do this, since giving liquids is apparently not a good option; this will just get left along the wall too. Once I was back upstairs, sans porter (I couldn't make her walk any further) the OT came to chat again. She told me Jadon can slowly try eating anything. He was just gagging a lot as he missed the appropriate age to have foods introduced. If foods are not introduced at a year, then the gag reflex starts to move forward along the tongue and it can become overly sensitive. Who knew? Using his tongue and teeth may help him with making his sounds as well.
So we have started giving him solid foods and he is loving it! He is doing really well, is not gagging too often, and is really proud of himself. We of course are proud of him too! This makes feeding him so much more enjoyable and so much simpler.
I had a visit from the surgical coordinator shortly before I left on Wednesday. She told me the team wanted a CD of the chest CT done in Vietnam. If I could get a hold of that and the pictures were satisfactory to them, then we could avoid do a repeat CT. She told me to call her as soon as Jadon's cold symptoms are completely gone and they will book him a surgery date. She was much more comforting than the cardiologist had been. It appears she thinks she can get me in sometime in the next few months. We will see. :)
He was discharged Wednesday afternoon. My friends picked me up and we stopped at Medigas to pick up a couple of tanks in the event he needed oxygen that night. He had been weaned off the O2 during the night Tuesday and throughout the day Wednesday but the team wanted us to have some with us. It was a bitterly cold day. Jadon did not respond well to it. We left the vehicle and I ran the 12 feet to the door of the building. Upon entering the business, Jadon was breathing really heavily and his lips were blue. It seemed the frigid air really stressed his system. My friend who is a cardiac nurse noticed as well.
Upon arrival home he got super excited when we drove in the driveway. We quickly ran him inside then I checked his sats...57% I started getting the equipment together to give him O2 but he quickly improved in the warm environment of our home. He was saturating in the low to mid 70s when he was settled. The tough thing was he just wanted to walk around and play with the kids and his toys. It was sort of sad watching him try to walk. He was stumbling frequently and becoming short of breath very easily. It was amazing how not walking for nearly a week had completely deconditioned and weakened him.
Once Jadon was settled in for the night I messaged my agent in Vietnam about getting a copy of the chest CT on CD. She made a few phone calls and then told me she had Fed-Exed it to me! Yay! Loan is so helpful! This gesture saves Jadon a ton of radiation and may also speed up his surgery as we won't need to wait for a CT timeslot. Of course, this all hinges on the pictures being clear enough for the doctors to visualize the vessels they are concerned about. Praying they are acceptable!
Since there is cost involved in doing a rush FEDEX shipment I needed to find an easy way to pay her. One of the families leaving today for Vietnam, agreed to allow me to email them the money so they can pay Loan when they see her. I have never physically met this woman, and she has never met me. It is amazing how supportive adoption communities are. They just help one another without thinking about it. I am truly appreciative to KS for helping us out in this way. She only had a couple of days before she left when I asked her, and could have very understandably said, "I would love to but I am much too busy". Instead, she went out of her way for us. Have a safe flight, K!
Today, is Saturday and Jadon has been home since Wednesday night. He has changed in leaps and bounds since last Saturday, the day we took him to hospital.
Here are some of his big milestones since last week:
1. He can drink from a cup
2. He can eat solids...aka regular food
3. He has slept through the night most nights...phewf! (finally!)
4. He is starting to talk!! --Wednesday night he said, "Nigh nigh, Neff. (meaning "Night, night Steph. ) I guess he hears me calling Steph by his name so that is what he has been using instead of "daddy" lol!
Today he said a few more words. We are sooo thrilled with all this progress!
I can't stop thinking of the verse that has been impressed upon me so many times in the past couple of months, "Unto Him who is able to do immeasurably more than we can ask or imagine." On many occasions since we have adopted Jadon, God has done just that. We are truly thankful!
Thursday, 11 December 2014
Medical Update: Jadon
During the past week, Jadon has had more than his fair share of doctor visits. Last Thursday I took him to the pediatrician because he had a five day history of cold and flu symptoms. Some of his other siblings were experiencing the same symptoms so we knew he had picked up a flu virus. He had been choking on his mucus throughout the night so we were sleeping with one eye open and giving him steamy bathroom humidity treatments, running a cool humidifier in the room and spraying nasal mist up his nose to try to loosen the sludge. The doc gave him an antibiotic and an oral prednisone prescription assuming he now had a pneumonia.
Unfortunately, Thursday night was not much better. In fact, his secretions were not really an issue but he kept dropping his body temperature and having cold sweats. His forehead was constantly coated with a bead of cold water and no matter how much we attempted to warm him his temp was very low. I knew this was not a good thing so in the morning my mother-in-law joined me in the trek down to the Hospital for Sick Children. As I expected, after triage, we were quickly whisked into a room and Jadon was put on a monitor. His oxygen saturation dropped to 63% so the nurse put him on a little flow-by oxygen. He was listless and lethargic much of the time.
Very shortly after our ER arrival a doctor arrived to assess him. He had a chest x-ray, blood work, ECGs, ventolin treatments, and multiple doctor visits. He was taken on and off oxygen but in the end the ER staff wanted it left on. His saturations were dropping frequently to the high 60s and once into the low 50s. At first the physicians thought he had a respiratory infection but they then decided that, yes, he had a flu, but it was his heart that was causing the low oxygen. He was having TET spells due to the flu stressing his heart. This is something that is not uncommon to babies with unrepaired Tetrology of Fallot. He was admitted to the cardiac floor for observation then discharged in the morning after his oxygen levels and energy level normal returned to near normal. Although I wasn't thrilled about having to be at Sick kids in the first place, there was an upside to it all. The ER docs arranged for a cardiology work up Wed. Dec 10th (yesterday). I had already had an appt booked with a local pediatric cardiologist, but the team felt if he were already linked up with Sick kids, things might move along quicker. They were also keen on having all of his tests on file in the event of a subsequent ER visit.
Tuesday we headed to our regular pediatrician for a weigh in, and check-up as well as a vaccination program start. Unfortunately Dr. B. did not feel Jadon was well enough to start his vaccinations. (He has no vaccinations as the orphanage doctor said he wasn't well enough to get them) His weight was back to nearly where we started :(. But, he was better clinically than the week before. Likely his weight dropped due to his illness. Dr. B was able to access the results of all the bloodwork and swabs and he told me Jadon tested positive for RSV. This is a respiratory virus that is particularly tough on kids under 2 years of age. It sends many babies into hospital every year. I was almost relieved he had it because it was the one respiratory condition I was afraid of him getting. I did not think he would fight it well at all. So far he is doing not too badly. I had figured on a week in hospital if he got RSV. Hopefully he will get fully over it soon.
Now, that brings us to yesterday...Wednesday. The morning started out with 45 min cardiac ECHO. (ultrasound of the heart and its surrounding structures) Jadon was a trooper. Since he will not lay on a stretcher without me, I laid on it with him laying on top of me. He lay so still during the test that he actually fell asleep. That's right. No sedation. Just a lot of friends and family praying :) After that was completed we headed for an ECG. Immediately after that, we were called in for a oxygen saturation check and medical history session by our cardiologist's nurse. I was in the midst of telling her Jadon's medical history when I noticed she kept readjusting his sat probe. It was reading in the mid to high 70s. I quickly informed her this was baseline and she shut the machine off. In the course of conversation I told her he had RSV and that I was trying to keep him away from all the other cardiac babies. She agreed it was a good idea and took me to a room to wait for the doctor. "It will be a bit of a wait as the doctor is seeing another patient, but this way you will not have to sit in the waiting room with all the others," she said.
I was led to a small dietician's consult room to wait as the examining rooms were all in use. I fed Jadon, played with him, played with him some more, and slowly started to get very tired. I had not had time to grab breakfast and it was 12:45pm at this point. My lone source of sustenance, apple juice, was not cutting it anymore. I dug around in the diaper bag and found a Mars bar. I felt like a little rebel chomping down on a chocolate bar in the dietician's consult room. The room had posters of the Canada food guide, articles about healthy cholesterol and plant sterols, and a pictorial of what a healthy plate of food looks like. It may have been the only time a chocolate bar has or ever will be eaten for lunch in that room...hee hee :)
We waited well over an hour for the physician. At which point Jadon became sleepy and dozed off in my arms. Finally, the cardiologist's fellow showed up, asked some questions, then told me the results of the ECHO. He said they can see the tetrology of fallot, the shunt is working well, and the pulmonary artery is a decent size. Say what? I was told he had a really small, underdeveloped pulmonary artery. The fellow explained to me that sometimes with increased blood flow the artery will grow. It appears that is what has happened! This is very good news! I was also told that he is not "shunt dependant". In plain English this means: If he develops a clot on the shunt he will go very blue, but he will not likely die if he is brought to the hospital urgently. His body will use other vessels to get to the lungs. This was music to my ears!
Once the attending doctor came in, he introduced himself and said he will be Jadon's Sick Kids doctor from now on. He explained Jadon's heart condition in detail, and said they would be presenting his case to the cardiovascular surgical team at either next week's meeting or the first one in January. Once that has happened, we will be called in to meet the surgical team in the preceding weeks. He also offered to arrange consults for the other needed specialties: ENT, Gen surgery, and genetics. ENT for his ear, Gen surg for his swallowing/feeding issues, and genetics to rule out a chromosomal issue. Hopefully things get arranged soon. I
While typing this blog post, my cell just rang. It was Sick Kids. The cardiology fellow was on the line... he called to say the list of patients was too long for Monday's meeting, and that Jadon would be presented at the first meeting in January. After that, I would receive a call. He then said, "Are you ok with that?"
"Yes." ...what else could I say?
I was a bit deflated but I also realize that nothing will be done during the two weeks following next Monday's meeting anyway. Christmas holidays are coming. Even the pediatric cardiologists and pediatric cardiovascular surgeons need a vacation.
Just don't be gone too long...Jadon needs you.
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