Scary Moment

Yesterday Savannah was doing great. She was on minimal pain meds and eating well. She was playing on the living room floor when I noticed a drip of blood coming from her mouth and then another from her nose. No big deal we expected some occasional bleeding even though she really had not bled since the day after her surgery. Then all of a sudden she vomited what seemed to be a large amount of blood. We immediately packed Sav up and headed back to children's hospital. By the time we got to the ER she had a fair amount of blood coming from her nose and mouth.

I have heard horror stories from friends that had to wait for hours at Children's emergency room before they were seen by a doctor or even just a physicians assistant. So I honestly expected to have to wait. Instead I walk in, the triage nurse takes one look and immediately escorts us to a trauma room. They immediately start an IV line and drawing blood for tests. We had a doctor in the room and looking at Savannah all within ten minutes of driving up to the ER. I was impressed and a little scared at the same time. It must be serious to get this kind of attention.

The ER doctor looked at Savannah determined that she was stable for the moment and paged Savannah's doctor who had seen her during her entire hospitalization and he said he would be on his way. An hour later and her doctor was in the ER. He was a bit stumped by the bleeding which had by then subsided. Her blood counts were still good and he left it up to us. She could be admitted overnight for observation or go home and keep an eye on her. We decided to go home.

While waiting for the paperwork Savannah started bleeding again. Her doctor came in and decided that he would admit her to the critical care unit for observation overnight. There was no way to stop the bleeding without cutting off an airway and he wanted to be sure that she did not get anemic or dehydrated. About two hours later Savannah spit up the largest blood clot/coagulated blood chunk I have ever seen. The nurse was confident after that happened, that Savannah would stop bleeding. Sure enough the bleeding stopped and never returned.

This morning she was discharged with a new pair of "no-no's" (arm restraints) since hers were covered in blood and sent on our way. Her repair still looks good and does not seem to be affected at all thankfully. So hopefully this is the last bump in the road and we can finish healing uneventfully!

Starting to heal

Life is starting to return to normal. Last night Savannah slept well only waking up a few times to get her pain meds and have a little snack. Overall she is doing well and is starting to crawl around and play again. The fact that she has to wear arm restraints to keep her from putting anything in her mouth has not slowed her down. She is still a little fussy at times but it seems to be discomfort rather than pain. Each say is better than the last even though the doctor did warn us that some days she may regress a little.

Home Sweet Home

Yesterday was a rough day/night which is why there was no update yesterday. They decided they would move us at midnight out of ICU and into a general recovery room. We moved to a shared room but thankfully had no roommate. Because of the move we got very little sleep that night and to top it off there was no rocking chair or glider in the new room. I asked if I could get one and they said that they did not have any in the wing that we were in and could not get one for us. I found it ironic. One of the most comforting things to a young child is to be rocked, so why would you not have any rockers in a children's hospital?

Yesterday evening Savannah started taking her meds orally and she was able to take in some childrens motrin and her Prilosec. Soon after she felt good enough to take in two ounces of formula. I was almost in tears I was so happy! By morning she had eaten eight ounces! The goal was two ounces to be released. So now we are finally home. What was only supposed to be a day or two stay ended up being five days, but at least we are finally home. For the most part she is pain free and is only taking Tylenol and Motrin. I am happy we can get away without any narcotics although we did bring Tylenol with codeine home just in case she needs it. Now it's time to catch up on some sleep!

Day three update

Savannah is still not eating. Initially they told us that they did not want to move us out of ICU until she eats so they can make sure that she doesn't aspirate or choke on any formula and told us that we would be staying put for the night. Well now they are telling us that we are moving to the new hospital wing tonight. So we still don't know what is happening for the night and until then I guess neither of us will be trying to sleep. We finally uploaded some photos so you can see where we have been staying. I love all the support we are getting from friends and family. It means the world to us and are so lucky to have all of you!!!

 Before surgery. Love the baby butt in a miniature hospital gown!

 A rare moment of resting by herself in her crib.

 Inside our ICU room with a view of the nurse's station.

Savannah's "monkey cage" crib

Finally all cleaned up and resting quietly.

Day Three

Savannah is doing much better today. She was taken off sedation around midnight last night and is almost completely off morphine. She is pretty much only on fluids and Tylenol at the moment. She just received her first dose of morphine since midnight last night. She just got a low dose hoping that it will help her eat. Even though she seems to be perfectly comfortable without the morphine we are hoping it will help her mouth sensitivity that may be preventing her desire to feed. We tried feeding her earlier this morning and she seemed eager to eat. She just can't coordinate her new tongue and palate enough to swallow. The next time we tried to feed she wanted nothing to do with the bottle and started to get upset. So hopefully in a little while she will want to eat again.

She has been sitting up most of today quietly watching nurses and doctors passing by. She also sat up in her crib for a little while to play with her musical book. We finally managed to get all of the clotted blood off of her mouth, nose and cheeks along with some tape residue. The doctor also released a stitch that was holding her tongue to her lip. (She had her tongue tie clipped and didn't want her tongue falling back and blocking the airway).

Hopefully in a little while Savannah will be moved to the surgical recovery floor and out of the ICU. This will allow us to have some visitors and not have to be buzzed in and out of the rooms. If she starts eating tonight or tomorrow morning, it is possible that she will be released tomorrow afternoon. She shouldn't have to stay any longer that Saturday but it all depends on when she becomes comfortable with eating again.

Day Two

**DISCLAIMER** I am very tired. This blog may not make any sense but I will try anyways!

We are still in the ICU today and probably will stay here through the night. Savannah had a pretty rough night, (so did we!) one that I would not wish on my worst enemy. It was a bloody, congested night but she kept her breathing up so the good news was she did not to be intubated. She removed her own nasal "trumpet" (a nose tube that was holding her airway open) this morning. We were concerned that the swelling might block off the airway but she seems to be doing fine on her own and she seems to be less irritated without it. We had her arm splints off for a few minutes this morning and she immediately tried to suck her thumb, so the restraints are back on until further notice.

Her bleeding seems to have decreased throughout the day and her breathing is becoming less labored. She also had a blood transfusion this afternoon to stabilize her blood cell count. The plan so far is to stay here overnight and then get transferred to unit with less nurse supervision tomorrow. She still has not had anything to eat but I may try to see if she will take a little diluted formula tonight.

We also managed to slip out for a few minutes in order to walk across the street to Ronald McDonald House and get a nice hot shower. It was great, very clean and HOT. I am starting to feel a little better already. Hopefully tonight we can each get more than two or three hours sleep but I am not hopeful. Savannah seems to be most calm and pain free when we are holding her. So we will happily oblige her every whim!!

I would post a picture but NO one needs to see what she looked like this morning. Especially parents reading this for more information about palate surgery!!! Although they assure us that Savannah is a special case that has been a little more difficult than most because of her small chin and her very wide cleft.

Now Recovering.

Savannah had her surgery today. Overall it went well. She had ear tubes placed, her palate repaired and her tongue tie snipped. She has a suture holding her tongue forward at the moment and a tube in her nose to help her breathe. She is very very swollen right now and she is currently being monitored in the ICU to see if she needs to be intubated to help with breathing. She is in a lot of pain and is doing a lot of moaning and crying. They are keeping her well sedated and medicated in an effort to keep her as comfortable as possible.

I don't quite know what I was thinking but this is so much more difficult than I expected. This is the hardest thing I have ever done in my life and I am sure Brian would agree. At least each day should get easier from here!

Green Light

We met with a great pediatric ENT (ear, nose, throat) doctor today. He was able to squeeze us in with only a 3 day notice. Our last ENT appointment that was canceled on Monday took us 2 months to get in! The doctor we met with today was extremely nice and left the decision up to us if we wanted to get ear tubes on Tuesday. If we wanted to go ahead he would make the time and be there even though it is VERY short notice and if he couldn't for any reason he promised that his partner would be there.

Even though Savannah's ear infection has resolved she still has some fluid in the ear. They did a vibration test and her ear drum would not vibrate. So we made the decision to go ahead with the tubes. The doctor believed that she would eventually need tubes and we don't want for her to undergo surgery two separate times if she doesn't have to. So we are currently on the count down to surgery which is scheduled for Tuesday at 12:30pm. The ENT will place the tubes and then her surgeon with come in and repair her palate. Overall, she should be out of surgery in approximately two hours.

I just want it to be done and over with already!!!

Surgery?

Surgery is currently on hold due to lots of insurance and doctor drama. We are hoping to get it all cleared up in the next day or two and complete the surgery as scheduled. It is just upsetting when it was their mistake and not ours. Please keep us in your thoughts and prayers. If we don't get surgery done in the next 2 weeks it is possible that it will be delayed until October because our doctor is going on maternity leave and apparently no one else is talented enough to operate on Savannah...

Two weeks!

We had a recheck for Savannah's ear infection yesterday and her pre-op appointment today. Everything is happening so quickly now! At her recheck her ears looked good but one ear drum was still slightly bulging so her doctor prescribed one of the strongest pediatric antibiotics there is. She wanted to be sure that the ear infection was completely clear before Savannah's palate repair surgery in two weeks from today.

Savannah loves her puppy!

At the pre-op appointment we met with the surgeon who described the procedure as "trying to sew two pieces of wet toilet paper together". Thanks that doesn't add to the stress level at all! We talked about what time to get to the hospital, how long surgery would take, the recovery time, and how we will feed afterward. As long as she remains healthy for the next two weeks... (crossing fingers, knocking on wood) we will check into Rady Children's Hospital at 10:30am with surgery scheduled for 12:30pm. The surgery will take approximately two hours. She will stay in the hospital until she starts taking her bottle again. That could be the same day or maybe a day or two depending on how she feels. The worst part of the healing process should be over in about two to three weeks.

 Yes, she is chewing on her sock!

If she is congested at all they will postpone the surgery. The palate repair will close off one of the ways she is currently breathing and her smaller chin can also cause breathing problems. For after surgery we were already given arm restraints. It is going to be a tough few weeks since she is a thumb sucker and loves to put EVERYTHING in her mouth!