I am not going to have quite as much to say about these next few days, so I may combine some into the same posts like with this one. We were starting to feel some sleep deprivation and had so much to worry about I think it filled our brains and blocked out some of the memories.
Wednesday, January 10th, 2018
What a tough day this was. I don’t remember a whole lot of specific details, but the ones I
Harper Did Not Want to Wake Up
do are mostly sad. We woke up for the day sometime after 6:00 am, before 7:00 am. Harper didn’t really want to be awake much this day. It was probably because of the amount of pain she was feeling every time she moved in the slightest. I think her throat was irritated from everything with the anesthesia, and each time she would cough it would make her flinch and start crying because it hurt her little back. She didn’t look like herself; her whole face was puffy and swollen from the prior day’s activities. All she wanted was comfort and affection from
When Harper Did Wake Up She Just Wanted to Hold My Finger for Comfort
us, but there was very little we could do to provide that for her. I spent a big part of the day standing by her bed so she could hold onto my finger and rest. Harper is naturally happy, but this day she did not smile. She hadn’t gone a day without smiling since she smiled for the first time, so this broke our hearts to witness.
Beth Holding Harper
We were told Harper could be picked up as long as she remained flat. Beth picked her up and laid her on a pillow in her lap at one point this morning, but it obviously put her in pain so we didn’t try that again for a while. Harper had some decent moments this day where she’d hold onto a soft toy. We saw her move a little too much a few times, and she quickly learned her new limitations to prevent the pain caused
Harper Not Wanting to Feel This Way
by it from happening again. This day we were most thankful when Harper was able to rest. At least when she was asleep she didn’t feel all the pain.
This day called for some evening Starbucks. One really nice thing about this hospital is that you can walk over to the main UAB building through a series of covered walkways to a food court and a (legit, not “we sell Starbucks coffee”) Starbucks.
Remember how I mentioned the hospital was running at full capacity in a previous post? Before we went to bed this night, our (very thoughtful, really) nurse warned us that they might need us to move during the night to a “normal” room if they needed Harper’s bed in the ICU for a new patient (we were thankful to hear she didn’t require the level of care they were used to on this floor any longer). Because she told us that, we went ahead and got all our stuff together just in case it happened. It did.
Finally Got Her Comfortable Enough to Sleep For the Night
The nurse came to our room about 1:30 am – after we had finally fallen asleep due to all the check ins and catheterizations and diaper changes – to tell us we had to move to a room on the tenth floor. We loaded up all our belongings onto a red wagon and to the bottom shelf attached to Harper’s rolling bed. This picture of the Birmingham night lights was taken at 1:47 am. Man, what a long day this was. We got situated in the new room as soon as possible – with all new
View from the Tenth Floor
nurses and staff. It seemed like an immediate step down in capability from the new staff taking care of Harper (and us). They had never heard of the dressing being used for Harper’s incision or the “mudflap” being used to guard it from her diaper. It was all frustrating, and we were ready to try to get some sleep and stop bothering Harper so much. We (or maybe just me – Beth has had a lot of trouble sleeping here) finally drifted off to sleep for a little while sometime after 2:00 am.
Thursday, January 11th, 2018
This day got off to a rough start, but with a little help it got better. For the purpose of not speaking too negatively about anyone, I will just say it felt like Harper’s care was immediately downgraded. The nurse assigned to Harper that night was apparently a brand new nurse. She was being mentored by another nurse, and she didn’t seem confident about anything. She had to ask questions about things like how to setup the IV pump. I mentioned in my last post that the nurses didn’t even know about the specific type of wound dressing Harper needed. They said they didn’t even have one on the floor and didn’t know what to ask for. Beth told them she could go back downstairs to ask the other nurses for one, but they ended up tearing up pieces of another type of bandage and sticking them to a different dressing instead of putting on a mud flap like what had been ordered by the doctor.
When Harper’s neurosurgeon came in this morning to check in, he witnessed some of the struggles we had been dealing with, and his nurse had the charge nurse retrain the
Window is a Good Place for Photos
whole floor on how to do what Harper was needing. Later in the day, the two nurses – in training and mentor – did a bladder scan to check the amount of urine in Harper’s bladder. Beth was in the shower, and they actually asked ME if I thought THEY needed to insert a catheter. I couldn’t catch myself before I said out loud to Beth through the bathroom door, “Hey, do we need to cath Harper? I didn’t know we had to tell them what to do.” After this, we (I) decided we were going to ask for a more capable nurse for Harper. I understand that this is a teaching hospital, and everyone has to learn sometime, but my 5-month-old baby who just had spinal surgery is not a good test subject. We called the neurosurgery nurse because at the time she was our go-to person for advice and getting things done. She got the charge nurse to come to our room, and we politely asked to get a different person. While the trainee did come back before things got switched up, try number two turned out to be so much better. We were relieved to feel like Harper was in better hands for the rest of the day, and we were actually praised for speaking up about what was going on. We could kind of tell we had been added to a “don’t make them mad” list, but that was really ok with us. The nursing supervisor checked in with us a few times, and we were really feeling like we were in good hands.
Beth, Papa, and Nana
Beth’s mom and dad came to visit us this afternoon. It was good to see them and visit for a little while. Our big window with a view of downtown is really a good place to sit and look out and talk with each other. It was also good to share with them what was going on and get their opinion about what we were doing.
Just to keep things in perspective – this is third day in the hospital, two days after the surgery. Harper is still receiving morphine almost every two hours and Tylenol every five. She’s having diarrhea almost every hour or two where we end up having to change the mud flap and the pad under her, and she’s having to have a catheter inserted every four to six to
Harper and Nana
relieve her bladder. She isn’t wanting to eat bottles – she might take one two-ounce premixed bottle of formula or might reject it all together. Each time any of these events takes place, she screams and cries because something happens to move her in a way that hurts her, scares her, or does both. We’re wondering what in the world we’ve done to our poor child and if we’ll ever get past all these bad experiences. I think we both thought to ourselves if we were going to ruin our always happy and smiling baby.
For a little extra positivity, Harper did smile for the first time this day since she had been in the hospital! She had a good stretch where she showed interest in playing with her Pooh bear for a little bit and even laughed at us for a minute. This instilled some hope that we were getting our old Harper back after all.
Our Baby Smiled!
To be continued…
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