We've spent a lot of our summer in doctor's offices, hospitals, and clinics. The weather has been unusually cool and damp, so I don't feel too cheated about missing spectacular summer weather, but with September fast approaching, it's starting to hit me how much time we've spent indoors.
The summer started for me, as it so often does, with a bad cold, which turned into a 4 week case of bronchitis, which really slowed me down. Thankfully I got fully better just in time for my husband to go into the hospital for spine surgery, and I was able to be by his side as his full-time caregiver for 3 weeks as he recovered. Then this past weekend, on the day that my husband was able to shower by himself for the first time, I felt that tell-tale pressure in my chest, and boom, I have bronchitis again. I may have underlying asthma. Anyhow, this time I went straight to the clinic and started on antibiotics and an inhaler, so hopefully it won't last 4 weeks like last time.
I was with my husband for most of the time while he was in the hospital. I slept (not well) in a chair by his bed. The spine and joint replacement ward that he was on was overcrowded, and the first day he was in a double room. The person in the other bed had about 12 family members there chattering away loudly in Spanish while the television blared. A thin curtain was all that separated us, and I was squashed up against a non-opening window in just a metal folding chair in a room that was about 85 degrees. The hospital had been heavily promoting its joint replacement program for the last year, and given how overcrowded the ward was, I think it's time they cut the advertising budget for that department. I was NOT happy with the hospital on that day, to say the least. Luckily my husband was still loopy enough from the anesthetic and pain killers to not be as angry as I was.
Around 10pm the patient in the next bed went home. An odd time for discharge, but I was celebrating! Now there was enough room for me to have a semi-recliner chair instead of the metal folding chair! Then the parade of interruptions began: 11:40p housekeeping comes to change sheets. 12:17am someone comes in to mop the floor. 12:54am lights on again for vital signs check. 1:22am time to change position with the help of 2 nurses. 1:48am alarm sounds on IV - bag needs replacing... on and on...no sleep here, even for the highly sedated one. My biggest task during my husband's hospital stay (other than keeping my temper) was dealing with the staff. He is hard of hearing, and combine that with the drugs and being surrounded by pillows in bed, and he could hardly understand a word that the nurses and aides were saying. It didn't help that many of the nurses and aides were foreign born with soft voices and thick accents. I had to keep reminding them to get close, look him in the eye, and not mumble directions from across the room while looking at their charts. There was one nurse we had a really hard time communicating with, and I ended up repeating everything that was said, at a shout, so the two of them could understand each other. 
My husband had six giant screws put into his spine, and on the second day he had a really hard time. A combination of uncontrolled pain, drug side-effects, and monstrous amounts of abdominal gas had him sweating, swearing, hallucinating, and screaming. At one point he was singing the "Mickey Mouse Club" song, interspersed with swear words. If he weren't in such agony it would have been funny. By late afternoon the "Rapid Response Team" flooded the room because his heart rate went through the roof, his oxygen sats took a dive, and his eyeballs looked like they were about to pop from their sockets. They did an EKG in the room, then decided to send him down to the first floor for a scan. Instead of transferring him to a gurney, they transported him in his bed, which barely fit in the elevator. With every bump as the bed hit walls and went over changes in flooring, he screamed bloody murder, and at one point he grabbed the arm of a nurse in a death-grip, probably bruising her deeply. He was completely out of his mind. The elevator was too small for me to fit in as well, so I took the stairs. From in the stairwell I could hear him screaming 2 floors away. It was awful.
After the scan the surgeon came by and assured us that the swelling was simply gas, and not a bleed. He also changed the medications and within 2 hours my husband was sane again. What a relief! Two more nights and two more days in the hospital, and then my husband was discharged home to my care.
At home I'd gotten most everything ready. A walker, a toilet topper with grab bars, a shower seat, a recliner, and more. For the first week home he needed help with everything: sitting down, getting up, dressing, bathing, using the bathroom, even rolling over in bed was impossible without my helping him. Every day I counted out all his medications, changed his bandages, kept him fed and hydrated, and tried to keep his spirits up. Likely an effect of the drugs, he cycled through sweats and chills, soaking bedding several times a night, so laundry was a constant in my life. Neighbors stopped by daily with meals, and flowers, and offers to take the girls out for adventures, for which I was so grateful. I was too busy to get cabin fever, but they were starting to go nuts from staying home day after day.
Several times a day I took my husband outside to walk. At first he was really unsteady, and I had to support him with a gait belt, and be ready to catch him properly if he fell. He was motivated to get off the painkillers, which I think were contributing to his dizziness, so after weaning off of those he was much more steady, and soon was walking solo, first with the walker, then with trekking poles, and finally very carefully without any support at all. I'm so proud of his progress!
But wait, there's more! For months we've been winding our way through the specialists at Children's Hospital for A. Finally the day arrived when she could have a test that one of the specialists ordered. My husband was less than a week out of the hospital, so one of our neighbors generously offered to care for him while I took A to the big Children's Hospital in Seattle. She endured the test that was ordered, but the specialist came in during it, requested a second run, and then sent us down the hall for two more tests, which hadn't been on the original agenda. He had seen or suspected something more...
Next up was an ultrasound. It went on and on, the technician stroking up and down, across and back. A loved it, said it felt like a massage, and was more than happy to lie there as long as needed. It was a breeze compared to the painful and invasive test she'd endured earlier.
As I watched the screen, trying desperately to decipher what I was seeing, I knew something was up. Of course the technician could say nothing about what she was looking for, but she did show A her different organs, because curious A kept asking, "Can you see my liver? What does it look like? Where's my spleen?"
Next up was an xray. Thankfully we then returned to the waiting room and were told that the specialist would see us shortly. I was so grateful to not have to go home and wait to find out what was going on, because clearly something was found that wasn't expected. For years I've suspected something, some structural problem, something that just wasn't right. There were lots of little things, but overall A fell within "normal" range, so the doctors put me off. But now, in addition to these other issues, A was feeling some pain, so I was more determined to get an answer.
Finally our turn with the specialist came. In the room were several other doctors and nurses. The specialist said that more tests were needed: an MRI, which had to be scheduled for another day. However, he could tell me what he saw so far. A had Spina Biffida Occulta, which you can see in the above xray. Where that little red "S" is are overlapping bones which should have fused into one solid bone before she was born. Consequently the nerves in that area may be pinched, deformed, or otherwise compromised. Other (possibly unrelated) clinical findings are leg length discrepancy (one leg shorter than the other), and one kidney almost twice the size that it should be.
Two weeks passed and I took A in for her MRI. She spent 20 minutes strapped down on the platform and stuffed in the tube, as the magnet thumped loudly round and round, with intermittent buzzing. I wasn't allowed to take photos, but I was able to sit in the room with her, about as far from her as possible. A "halo" with a mirror was placed over her head, so as she lay there on her back, she could look up into the mirror and see a television screen at the foot of the machine. Noise-cancelling headphones were placed on her ears and she was able to watch Disney's "Chitty Chitty Bang Bang" during the proceedure. I was so proud of her for being still and calm througout.
Now we wait. There is team of specialists involved now, and they need to confer over all the test results. Will there be a further diagnosis? Treatment? Surgery? How will her growth spurt and puberty fit into all this?
For now I am taking my goopy lungs back to bed in hopes of beating back this bronchitis before it takes any more out of me. I just don't have the energy for this. I'm supposed to be the caregiver around here, not the sick one.
