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.
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?"
"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!