Apologies for the 'radio silence' in these parts lately.
If you've been missed our posts and updates it's because it has been a hectic last month preceded by a few months of wondering what is going on with my son's GI system. So this post is just about life, no barre, no fitness, but life.
I can not say enough good things about the Penn State Hershey Children's Hospital.
My husband and I are so grateful for the assistance we have received for getting our son into the specialized pediatric GI office and the swiftness of how fast our son has been able to get testing completed. This testing culminated in endoscopies yesterday.
The care he received during before, during, and after his procedures was incredible! I was nervous about how they would handle taking him to the procedure room and away from us, but we were happy to learn that they encourage parents to stay with their child until they are sedated. My son wanted me to ride on the gurney with him and my husband walked next to us. Then we got to take him into the room and help comfort him as he was sedated.
We began to get a little worried after we were waiting over an hour for his 45 minute procedure, but were soon notified that everything was going fine, but just taking a little longer. The Pediatric GI specialist, Dr. Falaiye, who performed the procedures spoke with us after the procedure. She spent a great deal of time explaining her findings, what they all meant, as well as why the procedure took longer than expected (our son ended up needing a breathing tube during the procedures and since he is very small and had so much inflammation and irritation that she had to proceed very slowly as well as not go to far with the scopes).
Were we not only impressed with this amount of time spent with us by Dr. Falaiye, our sons's doctor, Dr. Jhaverei, then came up to the aftercare unit, even though he had a fully booked day, to speak with us for a good 20 minutes before we left to sure up the next steps in our son's care plan.
We left the hospital comforted by all the care from the entire team. We had a good visit to Chocolate World after discharge and lunch to try to get our son eating a bit after no solid food for over 24 hours. We then went home and had a good afternoon/evening.
As bedtime neared our son's breathing started to sound like he had a bit of congestion but he went to bed fine and we checked on him hourly. As I was getting ready for bed I heard him rustle and went in to check on him again. At this point he was having trouble breathing (sounded like he was having an asthma attack even though he doesn't have a history of asthma). We tried to get him to drink thinking maybe the air was a bit dry, but it hurt his throat and he was gasping for air. We luckily have a nebulizor from a cold that lingered a few months ago. While I gave him a treatment, my husband was on the phone with the on-call attending who completed his procedure. We didn't know if this raspiness/wheezing was 'normal' after having been intubated during his scopes. She let us know that it was not normal and if he started again within two hours to get to the ER. About 10 minutes after he was done with the treatment he started the wheezing sound again and we threw some clothes in a bag and headed back to the hospital.
Hershey has a separate pediatric ER and everyone was amazing with how they spoke with us and our son and explained everything. After several hours in the ER, medicine that really helped his breathing, and a little rest on and off we headed up to a pediatric floor in the Children's Hospital.
After the initial check in upstairs they let us all rest as much as possible and again all the team members did an incredible job with our son as well as with making sure we understood everything and getting us anything we needed. We are happily at home now after another dose of medicine and my guy is getting some rest while I hold him on the couch.
A few final points to my long ramble:
1. Trust your intuition. Since February I knew something was going on with my son, after all, I didn't think blood and blood clots in a non-constipated 2 year olds stool was normal. I kept calling and documenting the issues or making appointments with his pediatrician's office as well as the allergist in case it might just be a newer food sensitivity.
If you feel something is wrong, call the doctor. I think part of the reason this went on for so long is that our son's pediatrician was on maternity leave and we saw a few different doctors who were not as familiar with our son.
-By all means, I do not mean to say be a hypochondriac...but if something keeps going on and on, a second or third opinion doesn't hurt.
2. Don't fear the hospital. We had two near trips to the ER and one actual ER visit now within the last month. I was nervous and scared of taking him to the ER because he acted fine most of the time and I didn't want the staff to think I was a hypochondriac. I now know that that is the place you want to be if things are not going well. The medical staff know if something is going on or not and while the ER is not the place to seek regular treatment it just made me feel better to know that if something was going on it would be handled and I didn't have the anxiety of wondering if I made the right decision to stay home.
3. Teaching hospitals are excellent - your doctor had to learn somewhere and the doctors of tomorrow need to learn somewhere as well. I have heard people say that they do not like teaching hospitals because when the doctors are making their rounds it's like they are all talking about you/your loved one but not even acknowledging you/your loved one is in the room. I did not feel this way at all. We did have to tell our son's history and symptoms several times, but so what? Med students need to learn how to get a full history and how to diagnose real life situations. The way the nurses, attendings, and residents all interacted with us and our son should be shown to medical students so they can learn they same level of care and attention.
4. Find your community/Know who supports you - wether it be a group of moms at a local new moms group, the moms you meet online in BATB class, moms in online help forums, or your friends locally and across the world who may or may not be parents because I have learned, as a parent you need to have a group or groups that you can turn to for support. I continue to feel so much better after having a simple chat with my best friend. I was able to turn to a family friend who went through similar experiences when one of her children was growing up which helped easy my anxiety about what a possible diagnosis of IBD would mean. I was able to turn to a local mom chat group to ask how the hospital handled procedures for young children. I even was able to gain support in the women I help support in teaching BATB classes - no matter what stage your child is going through, moms in class are there to help each other, learn from each other, connect with each other, and spend time bonding with their baby while strengthening themselves.
5. Support your local and national organizations like The Children's Miracle Network and The Ronald McDonald House. Even with my history working in a hospital as a counselor, for Children and Youth Services as a caseworker, and time learning about the local Ronald McDonald House to volunteer, I never realized the extent of all that these charities provide to any child or family with a child in the hospital!
I feel truly blessed to have such an amazing Children's Hospital within a 30 minute drive as well as another incredible Children's Hospital within an hour and a half drive of our house and for my support system. I can not name all the incredible physicians, nurses, and staff who assisted us as there are too many to list and so many that we didn't even learn all their names.
Now we are waiting for the results of the biopsies that were taken during the scopes, a MRI in the near future, a referral to the Very Early Onset IBD Clinic at CHOP, and another endoscopy in a few months. We can hope against hope that the issue is a infection that just never showed up on any of the previous tests, but it is likely that it is IBD. I don't look forward to scheduling all of these and having to put my son through these tests again, but I know that he is in excellent hands.
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